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Webinar: Improving the way we manage our EHCP duties – “Making SEND Everybody's Business"

Thursday 23 May, 7pm - 8pm

Online (Teams)

There is a lot of change happening to positively impact the experiences of families of children and young people with an EHCP. You may have heard already about the £7million of ongoing annual investment into our EHCP duties, and our ‘Making SEND Everyone’s Business’ transformation programme.

Our Director of Inclusion and Skills will discuss how the money is being used and what this means for you if your child has, or is in the process of getting, an EHCP. Change takes time, and we hope families start to feel the positive impacts later this year.

If there are any questions you would like to have answered during this session, please email them to SENDstrategy@hertfordshire.gov.uk. We will theme up the questions we get and try to answer as many as we can during the session. We can’t respond to questions about individual children or their EHCPs, but we will address the general challenges that we know lots of families are facing.

Save this joining link, which you can use to join the meeting at 7pm on Thursday 23 May: Webinar joining link

You can share your attendance on our Facebook event too, where you can also find the link. Webinar: Improving the way we manage our EHCP duties - Making SEND Everyone's Businesss | Facebook

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AI Support for learning at home and in class.

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AI Support for learning at home and in class.

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SEND and Mental Health support accessible locally for parents and carers in Hertfordshire

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SEND and Mental Health support accessible locally for parents and carers in Hertfordshire

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MARCH 2024

Please find attached the professional and parent/carer DSPL3 March Newsletters with information on SEND Training, updates and contact information.

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Students are selected each week by members of staff that have witnessed them upholding the River's values and are celebrated on our star board.

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Coming Soon

Each student will receive positive points in recognition of them upholding the River's 4 Rs whilst learning and receive a meaningful reward for their efforts.

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Positive postcards are sent home by staff when a student has made good progress and deserves to celebrated.

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01727 833963

support@add-vance.org

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Your guide to ADHD and Autism support in Hertfordshire

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The SEND Local Offer website (https://www.hertfordshire.gov.uk/microsites/Local-Offer/The-Hertfordshire-Local-Offer.aspx) lets parents, professionals and young people know what special educational needs and disabilities services are available in Hertfordshire, and who can access them. This includes:

Find courses, inclusive activities and things to do

A resource area, where you can immediately find expert practical activities, strategies and teaching resources to support a range of needs

Support in education and support for transitions

Education, Health and Care Plans

Health and social care services

Information for children in the early years (0 -5)

Information on preparing for adulthood (ages 16 – 25)

Money advice

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The Gifted - Butterfly Project

Online and One 2 One Mentoring and Workshops for Girls

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The Gifted charity helps young people to fulfil their potential by offering 1-2-1 and group workshops designed to inspire and empower.

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Youth Counselling Trust

Counselling Support across Essex and Hertfordshire

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This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website.

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Contact us

safespacemailbox@hertfordshire.gov.uk

01992 588796

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Safe Space offers children and young people across Hertfordshire a creative, confidential and safe space to explore any issues affecting their everyday lives.

Counselling in Schools service

The Counselling in Schools service provides counselling and art therapy to primary schools, secondary schools and colleges across Hertfordshire.

Please note that due to a high volume of demand for art therapy currently, this provision is only available in limited areas of the county. Please contact the Safe Space team to check availability before making a referral for art therapy.

Make a referral

A professional must make the referral to Counselling in Schools.

Professionals should complete the Safe Space referral form to refer a child or young person for counselling or art therapy provision.

Referrals should only be sent via email when the sender has a secure email address. Otherwise HertsFX or Schools FX must be used.

You can email the form to the Counselling in Schools team: safespacereferrals@hertfordshire.gov.uk

Prices

We are a traded service meaning funding is needed in order for the work to go ahead.

The majority of work is funded by schools direct. However, depending on the circumstances of the child or young person, alternative funding may be available to support the work.

We provide free CRISIS support to schools when there has been a serious incident.

Alternative funding

We're now commissioned by several different organisations to deliver projects which means you may be able to refer to us at no extra cost.
Single Point of Access (SPA)
Parents/carers, schools and other professionals can refer children and young people to Single Point of Access for therapeutic support. Such referrals may get triaged to Safe Space to provide 12 sessions of support funded by Hertfordshire Partnership Foundation Trust.

Virtual School (CLA)
For CLA, schools can access termly funding from the Virtual School for such pupils which can be used to access therapeutic support.

Who we can work with

The service works with children and young people aged 5 -19 years (up to 21 years for care leavers). If the young person is not at school or college, we can make arrangements to see them at another appropriate space.

Counselling / Art Therapy can be helpful:

When there is evidence of a behavioural change

When a young person is angry, shows mood swings or signs of depression

When parents are going through divorce or separation and there are signs of distress

Following the death of a family member or friend

When there is suspected abuse or domestic violence

When there are difficulties with friendships and/or bullying

When a child/young person is having difficulty settling in

When there are identity issues i.e. gender, cultural

If there are health or disability issues e.g. life limiting illnesses

When a child/young person refuses to engage with specialist services

When they are willing to engage in counselling / art therapy on a voluntary basis

When they are not engaged in counselling or therapy elsewhere at the time.

Benefits

Improved self-esteem

Reducing the risk of exclusion

Improvements in behaviour and/or attendance

Improved peer relationships

Better attainment/achievement

Quality assured service

All our counsellors are qualified to at least Diploma level.

Our art therapists are qualified to Masters level.

All our therapists have a valid Disclosure Barring Service (DBS) check.

All counsellors are accredited or working towards accreditation with the British Association of Counselling and Psychotherapy (BACP).

All counsellors and art therapists access regular clinical supervision.

Training and supervision

We offer reflective supervision and training for schools and professionals under our Counselling in Schools service. To discuss your needs, costs and our availability please contact the Safe Space team via: safespacemailbox@hertfordshire.gov.uk or 01992 588796.

Mentoring

Mentoring involves a young person meeting with a volunteer mentor for an hour or so a week, in a public place such as a café or library (or engaging in a social activity).

Make a referral

A professional must make a referral to the Mentoring programme.

A professional could be a teacher or someone at school if no other professionals are involved. For young people under the age of 13 signed parental consent is required.

If you wish to make a referral this must first be discussed with a Mentoring Co-ordinator in order to check suitability and waiting times.

To do this you can email mentoringmailbox@hertfordshire.gov.uk or call the office on 01992 588796.

Prices

Our mentoring programme is free to access, however we do have a cap on the number of referrals any one school/college or district team/service can make at any one time free of charge to ensure our programme is accessible across the whole county.

Any one referrer or school/college may only make a maximum of 2 referrals at any time free of charge, and any one district team/service may only make a maximum of 5 referrals at any time free of charge.

Any number of referrals above these caps are chargeable.

Who we can work with

The Safe Space mentoring programme is available to 11-19* year olds (up to 25 years for young people with learning difficulties/disabilities and those who are care leavers) across Hertfordshire who have low to mid-level support needs. *If aged 11 the young person must be in year 7.

The programme is voluntary so the young person must agree to the referral and support.

What we offer

Mentoring gives young people a chance to talk about anything they wish to discuss or want advice on.

Typically, mentoring lasts for 6 months, however, this can be longer or shorter depending on the young person's needs.

Some young people decide to set goals at the beginning of the mentoring, whilst others simply value the one to one time, just to talk with someone outside of their family / school.

Mentors

All our mentors go through a recruitment process, 2 day training and have a valid Disclosure and Barring Service (DBS) check.

Training and supervision

The mentoring team also offer training and consultancy for schools and other organisations/services. To discuss your needs and costs, please contact the mentoring team via:
mentoringmailbox@hertfordshire.gov.uk

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Safe Space offers counselling in schools, and brief therapy and mentoring for young people.

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Healthy Relationships / Sexual Exploitation

01992 588220

sfyp.broxbourne@hertfordshire.gov.uk

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Free

Broxbourne, East Herts or Welwyn Hatfield

Services for Young People's Reach Out Project provides individual support to young people vulnerable to sexual exploitation in the Broxbourne, East Herts and Welwyn Hatfield areas.

Services for Young People's Reach Out Project is specifically designed to enable young people to make informed, safe choices in forming and maintaining appropriate, healthy and safe relationships. In addition to one-to-one support, by encouraging young people to join in with group work projects, they are introduced to new friendship groups and new opportunities.
How to join the project
Young people:
If you are worried that your relationship is becoming controlling, abusive or making you uncomfortable, or this has happened to you in the past, get in touch and ask to attend this project.

Parents/carers/practitioners:
If you are a parent/carer or work with young people and believe that this would help a young person you know, you can refer them to this project - just get in touch using the phone number or email address below. The team will arrange to speak with the young person and find out more about how we can help them.

Details

Venue: Contact us for details of the venue, which can be in, Broxbourne, East Herts or Welwyn Hatfield

Age Range: 11-17

Cost: Free

Days and times:
Varies depending on individual needs

Booking Info: Booking always needed

Contact: Services for Young People Broxbourne, Welwyn Hatfield and East Herts Teams, tel: 01992 588220, text: 07860 065173, email: sfyp.broxbourne@hertfordshire.gov.uk, website: click here...

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Services for Young People Reach Out Project, Broxbourne, East Herts and Welwyn Hatfield

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Services for Young People's Reach Out Project provides individual support to young people vulnerable to sexual exploitation in the Broxbourne, East Herts and Welwyn Hatfield areas.

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Thursdays 6-8pm
Term time only.

01992588220

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The Services for Young People Girls and Young Women's Project at Cheshunt Young People's Centre is a free project for young women aged 11-17 in the Broxbourne area. It will help to boost your confidence and self-esteem, recognise and develop healthy relationships and keep safe online.

Join this Services for Young People Girls' and Young Women's Project, which aims to support young women in the Broxbourne area.

The group provides a safe space for young women to explore current issues important to young women today, such as aspirations and opportunities, confidence and self-esteem, image and identity, social media, bullying and online safety, sex and relationships.

How to join the project:

Young women can get in touch and ask to attend this project. If you are a parent/carer or work with young people and believe that this would help a young person you know, you can refer them to this project - just get in touch using the phone number or email below. Our local team will then speak with the young person and find out more about how we can help them.
Cheshunt Young People's Centre is fully wheelchair accessible.
Details

Venue: Cheshunt Young People's Centre, 178 Crossbrook Street, Waltham Cross EN8 7JY

Age Range: 11-17

Cost: Free

Days and times:
Thursdays 6-8pm
Term time only.

Booking Info: Booking always needed

Contact: Services for Young People Broxbourne Team, tel: 01992588220, text:07860 065173, email: sfyp.broxbourne@hertfordshire.gov.uk, website: click here...

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Services for Young People Girls' and Young Women's Project at Cheshunt Young People's Centre

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The Services for Young People Girls and Young Women's Project at Cheshunt Young People's Centre is a free project for young women aged 11-17 in the Broxbourne area. It will help to boost your confidence and self-esteem, recognise and develop healthy relationships and keep safe online.

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Art Therapy & Counselling for Children and Young People

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We support the positive mental health of children and young people, 0 - 25 years.

We do this three ways:

NESSie provides easy access to arts therapies, counselling, support and training so that children, young people and their families can thrive. We provide support through partnering with local schools, county councils and community organisations within Hertfordshire and the surrounding counties. Parents can also reach out to us directly.

Together our therapists have over 200 years of experience. We welcome diversity and have specialist trauma, ASC and LGBTQ+ therapists within our team. We have excellent feedback from organisations and parents and a long history of working relationships with local statutory and community partners.

child centered, flexible support Our Mental Health Leads Training is quality assured by the Department of Education.

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Welcome to NESSie. Experienced counsellors, arts therapists and ASC/LD specialists to support the mental health of children and young people.

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Domestic Abuse Support Service

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Safer Places are an independent charity which exist to support survivors of domestic abuse.

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This months family support blog #12 focuses on our children’s emotions with some tips and advice on how you can help your child cope.

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February 2020 - Update on the changes underway within Hertfordshire's service to adolescents
The Specialist Adolescent Service Hertfordshire (SASH) will be formally launching on 01 April 2020.

The service will provide support to:

Young people aged 11 to 17 in families at risk of breakdown or on the edge of care

Young people who go missing from home or those that are at risk of, or subject to, child exploitation, including gangs and county lines

Young people in the Youth Justice system to prevent offending and re-offending; and to support victims of youth crime and their communities.

Young people aged 16 to 17 years old who are homeless

SASH will be underpinned by a practice model incorporating the below core frameworks. All staff will be trained and a range of tools will be in place to ensure these approaches are embedded within the service.

Services for Young People - Continuum of Need

As part of service developments a service specific continuum of need document has been developed which seeks to ensure that young people are receiving the right level of support according to their needs.

The aim being that once finalised, this document will improve consistency around decision-making in relation to the level and type of support that is appropriate to individual need.

TCE Workshops

In November Research in Practice held two workshops, one for Practitioners and another for Managers.

Three high-level themes arose from the sessions and work is currently underway with partners to develop a plan of how to action these within practice.

1. Supervision

2. Peer Support

3. Multi Agency Working

SASH will deliver flexible and responsive support packages to young people and families. The intensity of support will match the level of need whilst having the flexibility to respond to unexpected needs as they arise at all times of the week, this will include early mornings, evenings and possibly weekends, dependent on the needs of the family.
Central SASH
The Central SASH team will work alongside Area Teams, who remain case holders throughout, to deliver intensive support to the highest risk cases - complex family dysfunction or separation, high risk behaviour, homelessness, child exploitation and Tier 4 returns home (mental health) across the county.
ARC Rapid Response Team
The ARC Rapid Response Team will primarily provide out of hours support to families and young people (aged 11-17 years) at the point of crisis, to prevent escalation and reduce the likelihood of children being accommodated or foster placements breaking down.

The Rapid Response Team will work closely with SASH to ensure a seamless package of support is provided to young people and their families. This will be managed by close liaison between the two Practice Managers within each team.

In specific circumstances, the Rapid Response have access to an emergency bed, located within ARC Short Stays Service. This will be used on a needs-led basis for no longer than 72 hours.

As part of the re-brand of SASH an intranet page will be set up which will contain high-level information about the service.
If you have any questions please email us at: SFYP@hertfordshire.gov.uk

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February 2020 - Update on the changes underway within Hertfordshire's service to adolescents The Specialist Adolescent Service Hertfordshire (SASH) will be formally launching on 01 April 2020.

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Special Adolescent Services Hertfordshire (SASH)

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Special Adolescent Services Hertfordshire (SASH)

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February 2020 - Update on the changes underway within Hertfordshire's service to adolescents
The Specialist Adolescent Service Hertfordshire (SASH) will be formally launching on 01 April 2020.

The service will provide support to:

Young people aged 11 to 17 in families at risk of breakdown or on the edge of care

Young people who go missing from home or those that are at risk of, or subject to, child exploitation, including gangs and county lines

Young people in the Youth Justice system to prevent offending and re-offending; and to support victims of youth crime and their communities.

Young people aged 16 to 17 years old who are homeless

SASH will be underpinned by a practice model incorporating the below core frameworks. All staff will be trained and a range of tools will be in place to ensure these approaches are embedded within the service.

Services for Young People - Continuum of Need

As part of service developments a service specific continuum of need document has been developed which seeks to ensure that young people are receiving the right level of support according to their needs.

The aim being that once finalised, this document will improve consistency around decision-making in relation to the level and type of support that is appropriate to individual need.

TCE Workshops

In November Research in Practice held two workshops, one for Practitioners and another for Managers.

Three high-level themes arose from the sessions and work is currently underway with partners to develop a plan of how to action these within practice.

1. Supervision

2. Peer Support

3. Multi Agency Working

SASH will deliver flexible and responsive support packages to young people and families. The intensity of support will match the level of need whilst having the flexibility to respond to unexpected needs as they arise at all times of the week, this will include early mornings, evenings and possibly weekends, dependent on the needs of the family.
Central SASH
The Central SASH team will work alongside Area Teams, who remain case holders throughout, to deliver intensive support to the highest risk cases - complex family dysfunction or separation, high risk behaviour, homelessness, child exploitation and Tier 4 returns home (mental health) across the county.
ARC Rapid Response Team
The ARC Rapid Response Team will primarily provide out of hours support to families and young people (aged 11-17 years) at the point of crisis, to prevent escalation and reduce the likelihood of children being accommodated or foster placements breaking down.

The Rapid Response Team will work closely with SASH to ensure a seamless package of support is provided to young people and their families. This will be managed by close liaison between the two Practice Managers within each team.

In specific circumstances, the Rapid Response have access to an emergency bed, located within ARC Short Stays Service. This will be used on a needs-led basis for no longer than 72 hours.

As part of the re-brand of SASH an intranet page will be set up which will contain high-level information about the service.
If you have any questions please email us at: SFYP@hertfordshire.gov.uk

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February 2020 - Update on the changes underway within Hertfordshire's service to adolescents The Specialist Adolescent Service Hertfordshire (SASH) will be formally launching on 01 April 2020.

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DSPL 4 Directory

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The Gifted - Butterfly Project

Online and One 2 One Mentoring and Workshops for Girls

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The Gifted charity helps young people to fulfil their potential by offering 1-2-1 and group workshops designed to inspire and empower.

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Youth Counselling Trust

Youth Counselling across Essex and Hertfordshire

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This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website.

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Domestic Violence Support

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Future Living Hertford exists to help women, men and children to live full and complete lives after their experience of domestic abuse.

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Contact us

safespacemailbox@hertfordshire.gov.uk

01992 588796

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Safe Space offers children and young people across Hertfordshire a creative, confidential and safe space to explore any issues affecting their everyday lives.

Counselling in Schools service

The Counselling in Schools service provides counselling and art therapy to primary schools, secondary schools and colleges across Hertfordshire.

Please note that due to a high volume of demand for art therapy currently, this provision is only available in limited areas of the county. Please contact the Safe Space team to check availability before making a referral for art therapy.

Make a referral

A professional must make the referral to Counselling in Schools.

Professionals should complete the Safe Space referral form to refer a child or young person for counselling or art therapy provision.

Referrals should only be sent via email when the sender has a secure email address. Otherwise HertsFX or Schools FX must be used.

You can email the form to the Counselling in Schools team: safespacereferrals@hertfordshire.gov.uk

Prices

We are a traded service meaning funding is needed in order for the work to go ahead.

The majority of work is funded by schools direct. However, depending on the circumstances of the child or young person, alternative funding may be available to support the work.

We provide free CRISIS support to schools when there has been a serious incident.

Alternative funding

We're now commissioned by several different organisations to deliver projects which means you may be able to refer to us at no extra cost.
Single Point of Access (SPA)
Parents/carers, schools and other professionals can refer children and young people to Single Point of Access for therapeutic support. Such referrals may get triaged to Safe Space to provide 12 sessions of support funded by Hertfordshire Partnership Foundation Trust.

Virtual School (CLA)
For CLA, schools can access termly funding from the Virtual School for such pupils which can be used to access therapeutic support.

Who we can work with

The service works with children and young people aged 5 -19 years (up to 21 years for care leavers). If the young person is not at school or college, we can make arrangements to see them at another appropriate space.

Counselling / Art Therapy can be helpful:

When there is evidence of a behavioural change

When a young person is angry, shows mood swings or signs of depression

When parents are going through divorce or separation and there are signs of distress

Following the death of a family member or friend

When there is suspected abuse or domestic violence

When there are difficulties with friendships and/or bullying

When a child/young person is having difficulty settling in

When there are identity issues i.e. gender, cultural

If there are health or disability issues e.g. life limiting illnesses

When a child/young person refuses to engage with specialist services

When they are willing to engage in counselling / art therapy on a voluntary basis

When they are not engaged in counselling or therapy elsewhere at the time.

Benefits

Improved self-esteem

Reducing the risk of exclusion

Improvements in behaviour and/or attendance

Improved peer relationships

Better attainment/achievement

Quality assured service

All our counsellors are qualified to at least Diploma level.

Our art therapists are qualified to Masters level.

All our therapists have a valid Disclosure Barring Service (DBS) check.

All counsellors are accredited or working towards accreditation with the British Association of Counselling and Psychotherapy (BACP).

All counsellors and art therapists access regular clinical supervision.

Training and supervision

We offer reflective supervision and training for schools and professionals under our Counselling in Schools service. To discuss your needs, costs and our availability please contact the Safe Space team via: safespacemailbox@hertfordshire.gov.uk or 01992 588796.

Mentoring

Mentoring involves a young person meeting with a volunteer mentor for an hour or so a week, in a public place such as a café or library (or engaging in a social activity).

Make a referral

A professional must make a referral to the Mentoring programme.

A professional could be a teacher or someone at school if no other professionals are involved. For young people under the age of 13 signed parental consent is required.

If you wish to make a referral this must first be discussed with a Mentoring Co-ordinator in order to check suitability and waiting times.

To do this you can email mentoringmailbox@hertfordshire.gov.uk or call the office on 01992 588796.

Prices

Our mentoring programme is free to access, however we do have a cap on the number of referrals any one school/college or district team/service can make at any one time free of charge to ensure our programme is accessible across the whole county.

Any one referrer or school/college may only make a maximum of 2 referrals at any time free of charge, and any one district team/service may only make a maximum of 5 referrals at any time free of charge.

Any number of referrals above these caps are chargeable.

Who we can work with

The Safe Space mentoring programme is available to 11-19* year olds (up to 25 years for young people with learning difficulties/disabilities and those who are care leavers) across Hertfordshire who have low to mid-level support needs. *If aged 11 the young person must be in year 7.

The programme is voluntary so the young person must agree to the referral and support.

What we offer

Mentoring gives young people a chance to talk about anything they wish to discuss or want advice on.

Typically, mentoring lasts for 6 months, however, this can be longer or shorter depending on the young person's needs.

Some young people decide to set goals at the beginning of the mentoring, whilst others simply value the one to one time, just to talk with someone outside of their family / school.

Mentors

All our mentors go through a recruitment process, 2 day training and have a valid Disclosure and Barring Service (DBS) check.

Training and supervision

The mentoring team also offer training and consultancy for schools and other organisations/services. To discuss your needs and costs, please contact the mentoring team via:
mentoringmailbox@hertfordshire.gov.uk

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Safe Space offers counselling in schools, and brief therapy and mentoring for young people.

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Healthy Relationships / Sexual Exploitation

01992 588220

sfyp.broxbourne@hertfordshire.gov.uk

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Free

Broxbourne, East Herts or Welwyn Hatfield

Services for Young People's Reach Out Project provides individual support to young people vulnerable to sexual exploitation in the Broxbourne, East Herts and Welwyn Hatfield areas.

Services for Young People's Reach Out Project is specifically designed to enable young people to make informed, safe choices in forming and maintaining appropriate, healthy and safe relationships. In addition to one-to-one support, by encouraging young people to join in with group work projects, they are introduced to new friendship groups and new opportunities.
How to join the project
Young people:
If you are worried that your relationship is becoming controlling, abusive or making you uncomfortable, or this has happened to you in the past, get in touch and ask to attend this project.

Parents/carers/practitioners:
If you are a parent/carer or work with young people and believe that this would help a young person you know, you can refer them to this project - just get in touch using the phone number or email address below. The team will arrange to speak with the young person and find out more about how we can help them.

Details

Venue: Contact us for details of the venue, which can be in, Broxbourne, East Herts or Welwyn Hatfield

Age Range: 11-17

Cost: Free

Days and times:
Varies depending on individual needs

Booking Info: Booking always needed

Contact: Services for Young People Broxbourne, Welwyn Hatfield and East Herts Teams, tel: 01992 588220, text: 07860 065173, email: sfyp.broxbourne@hertfordshire.gov.uk, website: click here...

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Services for Young People Reach Out Project, Broxbourne, East Herts and Welwyn Hatfield

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Services for Young People's Reach Out Project provides individual support to young people vulnerable to sexual exploitation in the Broxbourne, East Herts and Welwyn Hatfield areas.

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01992 588220

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The Services for Young People Positive Pathways Project supports young people in the East Herts area who are at risk of, or are already engaging in, anti-social behaviour. A qualified youth worker will engage with the young person on a one-to-one individual basis to support them through making positive choices about their future.

Services for Young People's Positive Pathways Project provides individual support for young people who are involved or at risk of involvement in anti-social behaviour. With the support of a qualified youth worker, the young person is provided with a safe space to explore the challenges and issues they may be facing.

Young people will receive advice and support on a wide range of topics, including substance misuse, planning their next steps, and identifying and fulfilling their future aspirations. Each young person will be supported to ensure that they are equipped with the necessary skills to make better choices and live a safer and more positive lifestyle.

How to join the project
Young people can ask to attend this project themselves by contacting the East Herts Team - details below. Parents/carers or professionals working with young people who believe that this would help a young person they know, can refer them to this programme by using the phone number or email below. Our local team will arrange to speak with the young person and find out more about how we can help them.

Details

Venue: Contact us for details of the venue, which in the , East Herts area

Age Range: 11-17

Cost: Free

Days and times:
Varies depending on individual needs

Booking Info: Booking always needed

Contact: Services for Young People East Herts Team, tel: 01992 588220, text: 07860 065173, email: sfyp.eastherts@hertfordshire.gov.uk, website: click here...

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Services for Young People East Herts Positive Pathways Project

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The Services for Young People Positive Pathways Project supports young people in the East Herts area who are at risk of, or are already engaging in, anti-social behaviour. A qualified youth worker will engage with the young person on a one-to-one individual basis to support them through making positive choices about their future.

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Drug and Alcohol Recovery Service

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Citizens Advice (previously Citizens Advice Bureau) is a network of 316 independent charities throughout the United Kingdom that give free, confidential information and advice to assist people with money, legal, consumer, and other problems. You can find your local service by following the link.

www.citizensadvice.org.uk/about-us/contact-us/contact-us/search-for-your-local-citizens-advice/

Working together with other agencies, we aim to support the provision of emergency accommodation and other support services, to anyone in Hertfordshire who has become homeless or is at risk of homelessness. Helping Herts Homeless is a team of volunteers that focuses on addressing the needs of the Homeless in Hertfordshire call: 01462 600 425 or

HYH focus on preventing homelessness in Young People aged between 16 - 24-year-olds from helping with education in schools and family mediation to supporting young people in their first homes or caring for adults of all ages who have mental health issues and housing needs. or call: 03000 355 775

Herts Mind Network also offer support to people who are having difficulties with their mental health and housing. Website for details or call: 0203 3727 3600 or email: info@hertfordshiremind.org

Contact website for further links for advice

Residents Handbook... A Guide To Hostels And Temporary Accommodation

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We offer people who have experienced homelessness with a place to call home for as long as they need it and meaningful work in our social enterprise. Living in a stable environment with the opportunity to gain new skills helps our companions to regain any lost self-esteem and confidence so they can get back on their feet. See website

CALL: 0300 303 7555 or EMAIL: contact@emmaus.org.uk

Shelter helps millions of people every year struggling with bad housing or homelessness through our advice, support, and legal services. And we campaign to make sure that, one day, no one will have to turn to us for help. Talk to an expert housing adviser if you're in urgent need of housing advice.

You should use this line if: You have nowhere to sleep, or might be homeless soon, You have somewhere to sleep, but nowhere to call home or You are/could be at risk of harm.

Our FREE helpline is open every day of the year: 0808 800 44 44 8am - 8pm on weekdays /9am - 5pm on weekends

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Citizens Advice (previously Citizens Advice Bureau) is a network of 316 independent charities throughout the United Kingdom that give free, confidential information and advice to assist people with money, legal, consumer, and other problems. You can find your local service by following the link.

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For families who live in the Borough of Broxbourne: Hoddesdon to Waltham Cross.

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For families who live in the Borough of Broxbourne: Hoddesdon to Waltham Cross.

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For families who live in Bishops Stortford, Sawbridgeworth, Buntingford, Watton-at-Stone, Hertford or Ware.

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For families who live in Bishops Stortford, Sawbridgeworth, Buntingford, Watton-at-Stone, Hertford or Ware.

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BENEFIT SUPPORT

DOMESTIC ABUSE SUPPORT

BEREAVEMENT SUPPORT

EMOTIONAL WELL-BEING AND MENTAL HEALTH SUPPORT

SEND (SPECIAL EDUCATIONAL NEEDS) SUPPORT

FAMILY CENTRES, HEALTH VISITORS AND SCHOOL NURSING

ADDITIONAL SERVICES

2. Benefit Support

If you are struggling with your finances, here are some services that can offer you some help:

This link provides some helpful information about Local Housing Allowance: https://www.eastherts.gov.uk/benefits-financial-support/housing-benefit/local-housing-allowance

Step Change can help with debt and offer f ree debt advice on 0800 043 40 50 or can be contacted on this link: https://www.stepchange.org/

3. Domestic Abuse Support

If you feel you are suffering domestic abuse or violence and you are in immediate risk, please call 999 immediately.

If you are not in immediate danger, here are some organisations that can help you with this situation.

The NCDV are a fantastic organisation that can help you to get an injunction or Prohibited Steps Order against the perpetrator as quickly as 24 hours. There has to have been recent police involvement for them to be able to do this for you. They can be contacted on: 0800 970 2070 or you can text NCDV to 60777 or you can access their website through this link: https://www.ncdv.org.uk/

This is some guidance from the local council on housing advice in relation to domestic abuse and violence: https://www.eastherts.gov.uk/housing/homeless-or-threatened-homelessness/housing-advice-domestic-violence-and-abuse

DAA bring together organisations working on the frontline of domestic abuse across the UK with the legal sector to deliver joined-up instant legal assistance and protection for victims. For more information, please see their webpage: https://domestic-abuse.co.uk/ or they can be contacted on their advice line: 0800 101 7110

4. Bereavement Support

It can be really difficult to loss someone we love and from time to time we may need support to help us with our grief.

At a Loss are the UK's signposting website for anyone bereaved and those supporting them. You can talk to a bereavement counsellor by clicking on the link: https://www.ataloss.org/live-chat and you can visit their website: https://www.ataloss.org/

Grief Encounter is a leading UK bereavement charity offering free, professional support to bereaved children, young people and their families. This includes face-to-face and online therapeutic services, a free national helpline open weekdays from 9am - 9pm, and training for schools, professionals and organisations. They can be contacted via phone on 0808 802 0111, or their webpage is: griefencounter.org.uk

Child Bereavement UK helps children, parents and families to rebuild their lives when a child grieves or when a child dies. We support children and young people up to the age of 25 who are facing bereavement, and anyone affected by the death of a child of any age. You can call them on:0800 02888 40 or visit them on their website: https://www.childbereavementuk.org/

5. Emotional Wellbeing and Mental Health Support

We all need some support from time to time to help to make us feel a little more in control of things. If you are concerned about your mental health, or the mental health of your child, your GP is always the best place to seek advice in the first instance. If you feel someone is at immediate risk of seriously harming themselves or others due to a mental health episode, call 999 immediately.

Here are some useful organisations that you can contact for self-help, after following the above advice.

Community and Wellbeing Page for East Herts offers lots of helpful tips and advice to stay healthy and improve your wellbeing. The link to their webpage is: https://www.eastherts.gov.uk/community-and-wellbeing

Papyrus is a charity that helps to prevent young suicide. Their webpage is: https://www.papyrus-uk.org/ they can be contacted via email on: pat@papyrus-uk.org or you can call Hopeline on 0800 068 4141

Samaritans can talk to anyone who is struggling with their mental health or emotional wellbeing. Their website is: https://www.samaritans.org/ They can be contact by phone on: 116 123 or emailed on Jo@samaritans.org and they will respond to you within 24 hours.

Getting out and about is so good for our mental health and emotional wellbeing. Here is a link to all of the local parks in the Ware area: https://www.eastherts.gov.uk/sports-leisure-parks/local-parks-open-spaces-0/parks-open-spaces-ware

6. SEND (Special Educational Needs) Support

Here are some really helpful places to get help and advice relating to Special Educational Needs.

SENDIASS offer lots of help and advice to parents on children with SEN needs, from advice around EHCP's to information on Transport to school. This is the link to their webpage: https://www.hertssendiass.org.uk/home.aspx or they can be contacted via phone on 01992 555847 (Monday to Thursday 9:30 - 3pm or Friday 9:30 - 2pm) or you an email them on info@sendiass.org.uk and they will aim to get back to you within 3 working days.

Children's Occupational Therapy service from the NHS can offer lots of advice and support to Parents and Carers to help their children to develop or maintain their independence. This service is available to all parents and carers across Hertfordshire. The link to the website is: https://www.hct.nhs.uk/our-services/childrens-occupational-therapy/

CHIPS Playscheme offer play and social opportunities for children with additional needs aged 3 to 19, and their siblings, living in East Hertfordshire and the Borough of Broxbourne. Their webpage is: https://chipsplay.org/

Grove Cottage provides social and educational activities for people of all ages with a learning disability based in Bishop's Stortford and surrounding areas. Their webpage is: https://www.mencapgrovecottage.org/

7. Family Centres, Health Visiting and School Nursing

There are four Family Centres in this area. In Hertford there is Selections and Churchfields and in Ware there is Silver Birches and Ash Valley. Family centres offer help and advice to families with children aged 0-4 and can offer various types of support to families to help then with any issues that may arise. They are also a good way to build networks of support with other families.

The main web address for the Family Centres is: https://www.hertsfamilycentres.org/family-centres.aspx and their central phone number is 0300 123 7572.

Hertford Selections Family Centre can be contacted on 01992 581258

Churchfields Family Centre can be contacted on 01992 906632

Silver Birches Family Centre can be contacted on 01920 463949

Ash Valley Family Centre can be contacted on 01920 468263

Health Visiting

To make contact with or get support from your local health visiting team, here is the address for their web page: https://www.hct.nhs.uk/our-services/health-visiting/ you can also access this service through your local Family Centre.

School Nursing

School nurses offer lots of different services and are a good point of contact if you have any concerns about your child's emotional health and wellbeing.

They can be contacted by phone on 0300 123 7572 or you can find out more about what they offer, through their website: https://www.hct.nhs.uk/our-services/school-nursing/

There is also a school nurse Instagram page and a chat health text messaging service for 11-19yo, which can be accessed between 9am - 5pm, Monday to Friday on 07480 635050 and they will reply as soon as possible, within a 24 hour time frame. More can be found out about this service on their Health for Teens webpage: https://www.healthforteens.co.uk/hertfordshire/chathealth-texting-service-for-age-11-18/

8. Additional Services

This is a list of other useful services within this area:

This link offers advice and guidance with regard to potential emergencies, whether it is a major incident, severe weather or possible flu pandemic.There is also advice covering factors that you may not immediately think of - issues such as how you can prepare for emergencies, and recovering after an incident. Here is the link for the webpage: https://www.eastherts.gov.uk/emergencies/useful-information-emergency

Healthy Hubs offer free information, advice and support to help you stay healthy and well. They can be contacted through their webpage: https://www.healthyhubs.org.uk/home.aspx or https://www.healthyhubnorthherts.co.uk/ Alternatively, they can be rung on 01462 474111 or emailed on healthyhub@north-herts.gov.uk

Family Lives offer lots of help and advice on many areas of family life. Here is a link to their webpage: https://www.familylives.org.uk/ or they can be contacted by phone on: 0808 800 2222 from 1:30pm - 9pm.

Alcoholics Anonymous can be contacted on this webpage: https://www.alcoholics-anonymous.org.uk/members/regional-&-local-websites/eastern-region/North-Herts-Intergroup/Meetings their national helpline number is 0800 9177 650 or they can be contacted via email on help@aamail.org

CGL offer help and support to people in recovery from drug and alcohol addiction. Their webpage is: https://www.changegrowlive.org/spectrum-hertfordshire-drug-alcohol-services/hertford and they can be contact via email at herts@cgl.org.uk or on 0800 652 3169 9am - 5pm Monday and Saturday or 9am - 7pm Tuesday to Friday.

Home - Start is a local community network of trained volunteers and expert support helping families with young children through their challenging times. Their website is: https://www.home-start.org.uk/

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BENEFIT SUPPORT DOMESTIC ABUSE SUPPORT BEREAVEMENT SUPPORT EMOTIONAL WELL-BEING AND MENTAL HEALTH SUPPORT SEND (SPECIAL EDUCATIONAL NEEDS) SUPPORT FAMILY CENTRES, HEALTH VISITORS AND SCHOOL NURSING ADDITIONAL SERVICES If you are struggling with your finances, here are some services that can offer you some help: This link provides some helpful information about Local Housing Allowance: https://www.eastherts.gov.uk/benefits-financial-support/housing-benefit/local-housing-allowance Step Change can help with debt and offer f ree debt advice on 0800 043 40 50 or can be contacted on this link: https://www.stepchange.org/ If you feel you are suffering domestic abuse or violence and you are in immediate risk, please call 999 immediately.

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ADHD & Dyslexia strategy: Text to Speech

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ADHD & Dyslexia strategy: Text to Speech

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ADHD and Dyslexia Strategies: How to Turn on Text to Speech on Your Mobile Device

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What Is Oppositional Defiant Disorder (ODD)?

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Approximately 10 minutes

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What Is Oppositional Defiant Disorder?

Oppositional defiant disorder (ODD) is a childhood behavior disorder defined by a persistent pattern of hostile, vindictive, and defiant behavior toward authority figures. Children with ODD are frequently irritable, argumentative, and disobedient. ODD may be diagnosed if this behavior lasts 6 months or longer.

ODD impacts between 1 and 16 percent of children and adolescents in the general population, but is far more common among patients with attention deficit hyperactivity disorder ( ADHD). In fact, 4 out of every 10 children with ADHD also show signs of ODD.

ODD may begin in childhood or adolescence and may progress into conduct disorder if left untreated. Treatment for ODD typically involves a combination of psychotherapy and medication.

Worried your child or teenager may have ODD?

Oppositional Defiant Disorder Explained

An oppositional, defiant child will often lose his temper, argue with adults, actively defy requests or rules set by adults, deliberately annoy people, and blame others for misbehavior. He will engage in angry, violent, and disruptive conduct directed at the adults in his life - parents, teacher, physicians, and other authority figures. And he may seem to feel most comfortable in the midst of a conflict, which is upsetting and exhausting for everyone involved - even the child himself. The ODD-diagnosed child is not merely an argumentative or difficult child; he or she is vindictive, rageful and deliberately antagonistic.

The symptoms of ODD may look different for girls and boys, in whom the condition is more common. Boys with ODD tend to be more physically aggressive and have explosions of anger while girls often lie, refuse to cooperate, and otherwise express symptoms in indirect ways. ODD is usually diagnosed in early childhood; some patients outgrow the condition by age eight or nine.
[Free Download: How to Neutralize Your Child's Anger]
Consult with a physician if you recognize the symptoms below in your child, and seek help immediately for violent or self-harming behavior that could be dangerous.

Oppositional Defiant Disorder Symptoms

Physical aggression

Verbal abuse

Explosions of anger

Deliberately annoying others

Vindictive behavior

Frequent arguments

Defiance of rules and laws

All children defy their parents and lash out from time to time. To merit an ODD diagnosis, however, a patient must exhibit a consistent pattern of negative, hostile, and defiant behavior that lasts at least six months.

Types of Oppositional Defiant Disorder

Physicians typically see two types of ODD.

Childhood onset is present from an early age, and can make children very difficult to raise. Early intervention and treatment can effectively address symptoms of ODD and prevent it from progressing into a more serious condition like conduct disorder.
[Download These Kid-Friendly Mindful Meditation Exercises]
Adolescent-onset ODD begins out of the blue in the middle- and high-school years. Once-loving children become impossible to live with. Home and school become places of almost constant conflict.

Can a Child Outgrow Oppositional Defiant Disorder?

Adults can have oppositional defiant disorder, too. The condition may persist for a lifetime just as often as it spontaneously disappears. In about 40 percent of cases, adults with ODD become progressively worse and end up developing antisocial personality disorder.

Even when the condition doesn't worsen, ODD in adults can cause problems in relationships, marriage, and work. Rates of substance abuse, divorce, and employment problems are higher in this population. Therapy and medication are the treatment strategies used most often with adults who have ODD.

Oppositional Defiant Disorder vs. ADHD

Surveys estimate that 5 percent of the general population has ODD, while up to 40 percent of children with ADHD may have the condition. Experts cannot definitely say why ODD and ADHD so commonly overlap.

What Causes Oppositional Defiant Disorder?

The exact cause of ODD is unknown, though many professionals trace it back to a combination of psychological, social, and biological factors. ODD symptoms are often linked to prenatal smoke exposure, toxin exposure, or poor nutrition. ODD is more common in people who have relatives with ODD, ADHD, conduct disorder (CD), mood disorders, or substance abuse problems, though researchers have not pinpointed a specific gene responsible. Traumatic life events, like childhood abuse, can trigger ODD for some people.

Parents and teachers are often the first to identify oppositional behavior in children. Then, the next step is to visit a child psychiatrist or other qualified mental health professional. To diagnose ODD in children accurately, a physician will perform an evaluation to rule out anxiety or mood disorders, which can all cause ODD-like behaviors. These behaviors are only "symptoms" of ODD if they occur more commonly than is normal for individuals of the same age and developmental level, and if they cause clinically significant impairment in social, academic, or occupational functioning.

An evaluating physician may compile a detailed behavior history from parents, teachers, and clinical observation. Talking to as many people as possible about how and where the behavior occurs can help the doctor determine which behaviors are impacting different areas of the child's life. It also helps to determine if the child is responding to a stressful situation, or if you're dealing with an ongoing behavioral issue. The physician may use rating scales and questionnaires to make a complete assessment. Diagnosis is time consuming because multiple sources of information must be assessed.

A person with ODD seldom takes responsibility for her behavior and the effect it has on everyone around them. She sees "the problem" lying with anyone but herself. It usually takes a highly qualified physician to determine whether problems at school, work, or home trace back to ODD.

Before diagnosing oppositional defiant disorder, the clinician must rule out conditions such as a mood disorder, personality disorders (particularly borderline, narcissistic and antisocial personality disorders), trauma (physical or sexual abuse), as well as substance abuse. Each of these can cause oppositional behavior and ODD symptoms.

The strain of dealing with ODD affects the entire family, and may strain marital relationships. Fortunately, effective therapies exist for reigning in even the most defiant child or adult. Changing behaviors is not easy, but it can be done - typically with the help of specialized psychotherapy, a physician to supervise treatment, and occasionally medication.

How Do You Discipline a Child with ODD?

Treatment for ODD includes psychotherapy and medication.

Behavior therapy and family/parent training programs are the treatment of choice for ODD. These programs teach loved ones strategies for dealing with upsetting behavior; suggest positive alternative behaviors to replace defiant ones; and establish guidelines for setting clear expectations, consequences, and rewards for behavior. Treatment is most effective when started early in life.

Oppositional Defiant Disorder Treatments

In those cases where a patient doesn't respond to therapy, medication is sometimes used to "re-wire" ODD behaviors. No medications are FDA-approved for treatment of ODD in the U.S., but clinical experience suggests that most children and adolescents with ODD improve with a low dose of atypical neuroleptics - arippirazole (Abilify) and risperidone (Risperidal), for example. Medication is most effective when paired with therapy programs.

People with mild ODD may report improved symptoms after taking omega-3 fatty acids to regulate mood and emotions, vitamin E to help absorb omega-3s, melatonin to help normalize sleep patterns, or zinc to help neutralize hyperactivity and impulsivity. These alternative therapies are not empirically proven to improve symptoms, however many patients find it helps to devise a holistic treatment plan with their physicians.
[6 Essential, Natural Supplements for ADHD]
Oppositional Defiant Disorder At a Glance

Comorbidity with ADHD
· 25 percent of boys with ADHD and 10 percent of girls with ADHD will develop ODD.
· About 40 percent of those children will get progressively worse and develop Conduct Disorder (CD).

Suggestive Symptoms
· Often loses temper
· Often argues with adults
· Often actively defies or refuses to comply with adults' requests or rules
· Often deliberately annoys people
· Often blames others for his or her mistakes or misbehavior
· Often easily annoyed by others
· Often angry and resentful
· Often spiteful or vindictive
· In adults, feeling mad at the world, losing temper regularly, relentlessly defending self when criticized or blamed; may present as spousal abuse or road rage

Professional to See
A family therapist or counselor. A child or adolescent psychiatrist will need to prescribe any medication.

Treatments & Medications
· Psychotherapy, including training or counseling for parents
· Stimulant medications used for ADHD
· Atypical antipsych0tics, including aripiprazole (Abilify) or risperidone (Risperidal)

Recommended Resources
· AACAP.org
· ConductDisorders.com
· EmpoweringParents.com
·Taking Charge of Anger (#CommissionsEarned), by W. Robert Nay, Ph.D.
·Your Defiant Child (#CommissionsEarned), by Russell A. Barkley, Ph.D.
Your Defiant Teen (#CommissionsEarned), by Russell A. Barkley, Ph.D.
Your Defiant Child: Parenting Easily Frustrated, Chronically Inflexible Children (#CommissionsEarned), by Ross W. Greene, Ph.D.

#CommissionsEarned As an Amazon Associate, ADDitude earns a commission from qualifying purchases made by ADDitude readers on the affiliate links we share. However, all products linked in the ADDitude Store have been independently selected by our editors and/or recommended by our readers. Prices are accurate and items in stock as of time of publication

Oppositional Defiant Disorder: Next Steps

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What Is Oppositional Defiant Disorder (ODD)?

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Oppositional defiant disorder (ODD) is an extreme behavior disorder defined by chronic aggression, frequent outbursts, defiance, and a tendency to irritate others. 40 percent of children with ADHD or ADD also show signs of ODD. Could your child be one of them?

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Tips for Managing Oppositional Defiant Disorder | Animated Video from Brain Balance

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30 seconds

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Tips for Managing Oppositional Defiant Disorder | Animated Video from Brain Balance

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Welcome to PANS PANDAS UK - PANS PANDAS UK

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Welcome to PANS PANDAS UK - PANS PANDAS UK

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PANS PANDAS UK are a Charity founded in October 2017 to educate and raise awareness of the conditions PANS and PANDAS.

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6 minutes

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PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

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This is our SEND information support page for students and families at The Phoenix Centre, Rivers ESC KS3 and KS4. Here you will find information on services and resources that may support you and your child on your SEND journey.

Our SENCos are:

Andrea Millard at KS3

andrea.millard@riversesc.herts.sch.uk

Carolyn Bolger at KS4 & Phoenix

carolyn.bolger@riversesc.herts.sch.uk

Our Family Support Workers are:

Althea Sansom at KS3

althea.sansom@riversesc.herts.sch.uk

Amy Kelly at KS4

amy.kelly@riversesc.hrts.sch.uk

Please feel free to contact us if you have any questions or queries.

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20 minutes

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Kristy Forbes, Advocate, Speaker and PDA inclusion activist
@_kristyforbes

We are learning and evolving in our understanding of the human brain all the time. The neurodiversity movement is a conversation, in which we are updating and evolving our language, labels and identities in a dynamic interaction between human cognition and what is considered "normal" in the modern world. For example, it's only been "normal" to communicate through literacy for 100-150 years. Many people wonder what are the "right" words to use to describe neurominorities /neurodivergence / neurodiversity and report feeling confused about how to think about it. It feels confusing because creating structure out of complexity IS confusing and for those of use with professional expertise and lived experience, we are also still finding our way.

This is especially true when it comes to Pathological Demand Avoidance (PDA), a condition widely associated with Autism but one that is emerging as an identity in its own right. Even the name has come under scrutiny from many who experience it since the word "pathological" implies a medical condition that requires treatment. Once again, we have used language to otherize a way of being, framing it around the inconvenience it may cause and implying a deficit, despite the fact that many PDAers lead full and happy lives. For this reason, some people prefer to simply say "Demand Avoidant". Perhaps a few years from now the language will have evolved on this particular subject and a new name will emerge. Either way, the UK's PDA Society report that 70% of PDA young people were missing education, which is an exceptionally high level, with ongoing potential implications into adulthood and careers.

This week I wanted to provide some education and insight into PDA so I had a talk with Kristy Forbes from InTune Pathways and The Neurodivergent Co. Forbes is an Autistic support specialist for neurodivergent people, she is passionate about radical acceptance and the celebration of neurodiversity and a PDAer herself.

Understanding PDA

I started by asking her to help us define what Pathological Demand Avoidance is. She said "It tends to be a powerful inherent protective factor for a person who requires extreme autonomy and is autodidactic by nature. Anything that compromises the autonomy of that person escalates their anxiety to an extreme state, causing them to appear to be grasping for phenomenal amounts of control over people, places and things. The truth is, we're complying with a neurobiological response to compensate for the perceived loss of control. We're not always consciously choosing or deciding this but following a neurological command which is what PDA is.

For PDAers, that neurobiological response to our environment can often be disabling, preventing us from complying with the ideas, thoughts, wants and needs of others. It is often also disabling for us in terms of our own wants and needs. If I plan too much or get too excited about my own hobbies, for example, my brain will confuse that excitement and joyous anticipation with threat and danger, resulting in demand avoidance. The brain does not care for details; it's one job is to keep me alive and the PDA brain operates in a similar way to a brain that has experienced trauma.

The earlier years of a person's life are hardest with PDA as these are the years we have the least amount of autonomy. It is an extremely complex neurobiology that is more often than not grossly misunderstood."

Forbes makes an excellent point here about the misunderstandings that can occur when someone unfamiliar with PDA encounters it. For children this often comes in the form of being labelled "defiant" and the response is to try even harder to make them submit to an adults control. For adults it is usually being called "controlling" or "lazy".

As a society we are too quick to assume negative motivation and will generally interpret a PDAers actions through a neurotypical lens, when in fact we should be offering acceptance and finding ways to work through it.

Supporting PDA Adults

Since Pathological Demand Avoidance in children is usually more noticeable and more widely discussed I wanted Forbes to share more about what PDA looks like in adults. She said "For many, it can be absolutely debilitating, but this is really in alignment with the social model of disability. That is, how well understood, supported and accommodated a person is in their environment. PDA expression can be anything from never placing ourselves in a position of vulnerability, to completely avoiding anything that is not on our terms. Many people go their lives not knowing they are PDAers and just label themselves as lazy, stubborn, defiant, insubordinate, pathological procrastinators and worse".

It's an aspect of the social model of disability that is so important to keep focus on. Disability inclusion is not only about practical accommodations like ramps, video captions and quiet spaces, it must also be about changing attitudes that teach us to assume the worst when we find someone's behavior challenging.

I asked Forbes what she thought we could do to better support PDA colleagues at work? She said "Understanding. But even before that, suspension of disbelief. As humans, we tend to be completely fixated on behaviour-the outer expression of a person, and we make many assumptions about the behaviour without further exploration. PDA behaviour may "look" like the behaviour of another person but indicate something completely different.

Keeping an open mind, exploring possibilities and options with the PDAer, but mostly allowing for as much autonomy and opportunities for self-directed tasks and learning as possible. Using language of possibility and choice rather than being too directive or instructional, and allowing the person to work in a collaborative, equal means so that respect and connection is paramount. Directive, instructional language is to the PDA brain as peanuts are for the anaphylactic. We cannot change this response. It can't be rewarded or punished away, which is why it's best accepted as a neurobiology that requires radical acceptance.

Many of us work best for ourselves or in roles with varying tasks to keep the brain on its toes. If the PDA brain does the same thing over and over, it becomes monotonous and ends up being a demand which is where resistance comes in. If we continue on this path of monotony, and there are emotional experiences associated with it such as dread or boredom, the task then becomes a threat which the brain seeks to avoid at any cost."

In my coaching and co-coaching practice, I often focus on what Forbes terms "suspension of disbelief." Humans have a tendency to assume that they can read the intentions of others by relating it to their own behaviours. If I withdraw when I am furious, I might assume that others who withdraw are also furious. If I talk excitedly with my hands when I am angry, I might assume that others who are talking excitedly with their hands are also angry. But it might not be furious, it might be taking time to process. And it might not be angry, it might be scared. And when PDA-ers are misunderstood, and their intentions miscast, this can be terrifying, setting off a cycle of spiralling communication that ends in relationship breakdown. To work with this, it is necessary to unpick the behavioral evidence from the (mis)interpretations. A few co-coaching sessions with manager and employee can work wonders.

How Can We Accommodate Parents In The Workforce?

Given the number of PDA kids who are forced out of education, I also wanted to discuss with Forbes the parents who drop out of the workforce because they are supporting a PDA child. Sadly, this is most often mothers. I asked her what changes we could employers make to facilitate neurodivergent families that want to work, to be included? She said:

"It depends on the capacity of the parent, and their need for something outside the family home. I need projects to keep me thriving, my work is my absolute joy and keeps me centred and balanced which helps me to be a better parent. However, there have been periods where I've not been able to work at all due to the support needs of my children at different stages.

I have worked in extremely flexible positions for organisations deemed family friendly (and they were), allowing me to start and finish at times that suit. But neurodivergent family culture is so fluid in the sense that our disability, our supports and our needs fluctuate from moment to moment so even in our best planning there will still be times where it may not work out.

Currently, I'm supporting one of my children through processing significant trauma as the result of a lack of acceptance, understanding and appriopriate supports in the educational system. Supporting a child who has experienced trauma is far more common in PDA families than it should be. My work and my availability has been compromised temporarily. I can't imagine a workplace where I could negotiate adequate and appropriate supports for myself in my parenting and professional role.

I'm currently designing a program to support parents of neurodivergent children to work for themselves. Working from home is a huge help. Autonomy, flexibility. If anything, as an entire world, we've just learned that working from home is absolutely doable and possible and I'd strongly encourage employers to consider this when supporting ND families."

Flexibility is essential for families of disabled children. As an employer myself, I've found a great deal of talent, loyalty and dedication from employees who are given a bit of flexibility and understanding. I'd rather have three days a week of someone brilliant and committed to our cause than five days a week of someone who is lukewarm.

Why Does PDA Get Left Out?

Finally, I wanted to address the fact that PDA is often left out of the wider neurodiversity conversation, as if it is a secondary issue or a minor co-occurring condition. I asked Forbes why she thought that might be.

"It's a relatively new neurodivergent identity and is still being explored in research. The current research began in the 80s which in research terms is very young. Thus far, it's still being debated around it's origin as it tends to mimic trauma responses yet is different in origin. It tends to be quite simplified as well, so when people hear "Autism with extreme anxiety" or "Autism with demand avoidance", the language is deceptive and does PDA a huge disservice. This is so much more than simple demand avoidance. It is a complex and whole being experience that lacks appropriate and adequate language to express itself. It's difficult for PDAers to be active participants in terms of being the researchers ourselves because, well...PDA! There are numbers of us out here, however, growing in numbers sharing our experiences and we can all be found on The PDA Society website which has been a wonderful resource.

PDA is not a formal diagnosis in itself as the research continues, rather it's an identification or recognition alongside autism."

PDA is a great case study of how our understanding of neurodiversity is constantly evolving. In the last fifty years it has gone from being nameless, to a subtype of Autism, to possibly a neurodivergent identity in its own right. By continuing to research and gain valuable insight from people like Kristy Forbes we can start to find better ways to offer vital support and inclusion to PDAers everywhere. I follow her on Instagram and her insights have touched me personally, her messages about internalized self-reproach are exceptionally reassuring and empowering. She holds wise words from which many of us can learn.

Thank you Helen Doyle for support on this article.

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neurodivergent identities: a lesson on pathological demand avoidance

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Emerging Neurodivergent Identities: A Lesson On Pathological Demand Avoidance From Kristy Forbes

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Once again, we have used language to otherize a way of being, framing it around the inconvenience it may cause and implying a deficit, despite the fact that many PDAers lead full and happy lives.

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40 minutes

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Key points around Pathological Demand Avoidance PDA

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40 minutes

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Harry J. Thompson was born in Edgware and grew up in Barnet in north London. He is currently based in London, UK. An avid reader & researcher, Harry speaks publicly and is heavily involved in projects & research on all topics around neurodiversity and autism; namely, Pathological Demand Avoidance, a behavior profile within the Autism Spectrum.

Harry began to write the first draft of his book in 2015. After connecting with many autistic & PDA families, he pivoted his direction and completed his book in about 6 weeks, a memoir entitled the PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum, published in February 2019. He launched his YouTube channel in 2017.

Harry has been elected to a Fellowship of the Royal Society of Arts (FRSA), in recognition of his work in the field of PDA, and also in recognition of the publication of his book.

BACKGROUND READING

The PDA Paradox, PDA, Harry's website, Harry's YouTube channel, Harry's Facebook page

Download a transcript of episode 54, made possible by supporters in our Patreon family. Click to join them.

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Episode 54: Understanding Pathological Demand Avoidance - The Neurodiversity Podcast

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Pathological Demand Avoidance is a newer concept for many in the US, but it's old hat for Harry Thompson.

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6 minutes

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What is Pathological Demand Avoidance (PDA)?

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We are registered as a charity in England and Wales (269425) and in Scotland (SC039427). The National Autistic Society is also a company limited by guarantee, registered at Companies House (01205298). VAT registration number: 653370050. © The National Autistic Society 2023

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Pathological Demand Avoidance

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Amanda Davey’s excellent dyscalculia website 

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Amanda Davey’s excellent dyscalculia website 

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At your own pace

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About Dyscalculia | Amanda Davey Dyscalculia | Online Dyscalculia Tutoring

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A brief introduction to what dyscalculia is. Book Amanda Davey to provide bespoke online dyscalculia tutoring or a more detailed, interactive introduction to dyscalculia as part of her INSET services.

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5 minutes

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When kids have dyscalculia, it impacts how well they learn and do math in school. But having poor number sense and other math skills can also lead to all sorts of challenges in daily life.

For example, kids with dyscalculia may have trouble with amounts, time, distance, speed, counting, mental math, and remembering numbers. Those difficulties can show up in ways you might not expect or recognize as being related to math.

Here are 10 surprising ways dyscalculia can impact kids.

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Dyscalculia can impact kids in unexpected ways. Here are 10 surprising behaviors you may see in your child with dyscalculia.

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5 minutes

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Lots of kids struggle with math, but for some the difficulties go beyond a little bit of frustration. If your child's math troubles are serious - and persistent - they may be a sign of a learning disorder called dyscalculia.

Dyscalculia is a term used to describe specific learning disabilities that affect a child's ability to understand, learn, and perform math and number-based operations.

Though research on prevalence is limited, it's estimated that between 5 and 7% of elementary school aged children may have dyscalculia. It's also currently thought that dyscalculia occurs equally in both genders.

No. Not all difficulties in math class - even serious ones - are caused by dyscalculia. Disorders like dyslexia, visual or auditory processing, ADHD, and others can also impact a child's ability to meet expectations in completing math problems. It's also possible for kids who do have dyscalculia to have other learning disabilities as well. Many do.

A young child with dyscalculia may:

Have difficulty recognizing numbers

Be delayed in learning to count

Struggle to connect numerical symbols (5) with their corresponding words (five)

Have difficulty recognizing patterns and placing things in order

Lose track when counting

Need to use visual aids - like fingers - to help count

And as math becomes a major part of the school day, kids with dyscalculia are likely to:

Have significant difficulty learning basic math functions like addition and subtraction, times tables and more

Be unable to grasp the concepts behind word problems and other non-numerical math calculations

Have difficulty estimating how long it will take to complete a task

Struggle with math homework assignments and tests

Have difficulty keeping at grade-level in math

Struggle to process visual-spatial ideas like graphs and charts

The impact of dyscalculia doesn't stop when math class ends. The disorder can also affect kids outside of school. Children with dyscalculia also:

Have trouble remembering numbers such as zip codes, phone numbers, or game scores

Struggle with money matters such as making change, counting bills, calculating a tip, splitting a check or estimating how much something will cost.

Have difficulty judging the length of distances and how long it will take to get from one location to another

Struggle to remember directions

Have a hard time telling left from right

Get easily frustrated by games that require consistent score keeping, number strategies or counting

Have difficulty reading clocks and telling time

The biggest sign of a specific learning disorder is a notable discrepancy between ability and aptitude. A kid with dyscalculia may preform well in other subjects - such as English or history - but have very low grades in math and math-based classes.

In the DSM-5, dyscalculia is called "specific learning disability with impairment in mathematics," but "dyscalculia" is still an accepted term and is used by schools and learning specialists.

There is no specific test for dyscalculia. Taking the following steps can help you get your child the help and accommodations he needs.

Visit your doctor: Rule out any medical issues such as hearing or vision impairment that could be impacting your child's learning process.

Consult with your teacher: Ask your child's math teacher to note the areas where he has the most trouble, and any and all strategies that help.

Ask about other areas: It's estimated that as many as half of kids with dyscalculia also have another learning issue. Understanding your child's complete learning profile will help you advocate for his needs

Consult a specialist: Once you've done the groundwork, talk to a learning professional who can evaluate your child and give you specific feedback on how to help.

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How to Spot Dyscalculia - Child Mind Institute

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When math difficulties mean something more - what are the signs, symptoms causes and condition of dyscalculia, for parents and educators.

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Life More Extraordinary with Lucy Parsons

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Podcast: Play in new window | Download

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How to help a child with dyscalculia

Many people feel defined as 'not-a-Maths-person', but for Dyscalculics it is more than that - they cannot distinguish the number quantity from the number symbol. Without the right support and learning, numbers are mere "squiggles". On today's show, I interview Dyscaculia expert Judy Hornigold to uncover what this learning difference is, and how it affects an estimated 3 - 6% of the population. We learn how to best support your child, and what effective tools and techniques help Dyscalculics thrive as independent individuals.

About Judy

Judy is an independent educational consultant specialising in dyscalculia and dyslexia and has been a Singapore Maths trainer, for UK based Maths No Problem since 2014. She has developed the PGCert in Dyscalculia and Maths Learning Difficulties for Edge Hill University and an accredited dyscalculia course for the British Dyslexia Association. She's also a lecturer and author of several books.

What we explore on the show

What dyscalculia is

What kinds of tasks children find difficult when they have dyscalculia The signs that your child might have dyscalculia How dyscalculia is diagnosed How to help a child with dyscalculia - strategies to help children overcome their difficulties How to communicate with schools and teachers about what helps your child to learn The relation between dyslexia and dyscalculia

Connect with Judy

Resources
Singapore Bar Modelling Times Fables - by Jessie Wilson British Dyslexia Association
Useful links
How to leave a podcast review for The School Success Formula
My book, The Ten Step Guide to Acing Every Exam You Ever Take .
Ten Steps to Exam Success download. Supportive Parents, Successful Students facebook group
Contact Lucy by email: lucy@lifemoreextraordinary.com

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[57] How to help a child with Dyscalculia with Judy Hornigold - Life More Extraordinary with Lucy Parsons

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Children with dyscalculia find it hard to understand basic number concepts. In this podcast episode we learn how to help a child with dyscalculia.

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Developmental co-ordination disorder (DCD), also known as dyspraxia, is a condition affecting physical co-ordination. It causes a child to perform less well than expected in daily activities for their age, and appear to move clumsily.
This topic is about DCD in children, although the condition often causes continued problems into adulthood.

Find out more about DCD in adults.

Symptoms of DCD

Early developmental milestones of crawling, walking, self-feeding and dressing may be delayed in young children with DCD. Drawing, writing and performance in sports are also usually behind what is expected for their age.

Although signs of the condition are present from an early age, children vary widely in their rate of development. This means a definite diagnosis of DCD does not usually happen until a child with the condition is 5 years old or more.

Find out more about symptoms of DCD in children.

When to seek medical advice

If you're concerned about your child's health or development, talk to a GP or health visitor, or speak to a nurse, doctor or special educational needs co-ordinator (SENCO) at your child's school.

They may refer your child to an occupational therapist, paediatrician, or another health professional who can assess them and try to identify any developmental problems.

Find out more about diagnosing DCD in children.

Causes of DCD

Doing co-ordinated movements is a complex process that involves many different nerves and parts of the brain.

Any problem in this process could potentially lead to difficulties with movement and co-ordination.

It's not usually clear why co-ordination doesn't develop as well as other abilities in children with DCD.

However, a number of risk factors that can increase a child's likelihood of developing DCD have been identified.

These include:

being born prematurely, before the 37th week of pregnancy

being born with a low birth weight

having a family history of DCD, although it is not clear exactly which genes may be involved in the condition

the mother drinking alcohol or taking illegal drugs while pregnant

Treating DCD

There's no cure for DCD, but a number of therapies can help children to manage their problems.

These include:

being taught ways of do activities they find difficult, such as breaking down difficult movements into smaller parts and practicing them regularly

adapting tasks to make them easier, such as using special grips on pens and pencils so they are easier to hold

Although DCD does not affect how intelligent a child is, it can make it more difficult for them to learn and they may need extra help to keep up at school.

Treatment for DCD will be tailored to your child and usually involves a number of different healthcare professionals working together.

Although the physical co-ordination of a child with DCD will remain below average, this may be less of a problem as they get older and develop coping strategies. Some children may continue to have problems.

However, difficulties in school - particularly producing written work - can become much more prominent and require extra help from parents and teachers.

Find out more about treating DCD in children.

Dyspraxia or DCD?

While many people in the UK use the term dyspraxia to refer to the difficulties with movement and co-ordination that first develop in young children, this term is used less often by healthcare professionals.

Instead, most healthcare professionals use the term developmental co-ordination disorder (DCD) to describe the condition.

This term is generally preferred by healthcare professionals because dyspraxia can have several meanings.

For example, dyspraxia can be used to describe movement difficulties that happen later in life because of damage to the brain, such as from a stroke or head injury.

Some healthcare professionals may also use the term specific developmental disorder of motor function (SDDMF) to refer to DCD.

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Developmental co-ordination disorder (dyspraxia) in children

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Read about developmental co-ordination disorder (DCD), also known as dyspraxia, a condition that affects physical co-ordination.

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Challenges faced by children, and practical tips

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Challenges faced by children, and practical tips

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32 minutes

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Today's episode is about dyspraxia, a developmental disorder which is most often associated with challenges related to motor coordination but is also often marked by disorganization, clumsiness and poor short-term memory. My guest, Victoria Biggs, knows first-hand what it's like to grow up with dyspraxia. When she was sixteen years old, she actually wrote a book to help teens like her get through adolescence called Caged in Chaos: A Dyspraxic Guide to Breaking Free.

Vicky is a university research fellow and lecturer, a teacher in a school for children with trauma-related mental health problems, a writer, and a story. In addition to having dyspraxia, Vicky is also autistic. In our conversation today, Vicky talks us through her own story of growing up with dyspraxia and shares her personal insights on how parents and teachers can better support dyspraxic children.

About Victoria: My name is Victoria Biggs. I usually go by Vicky. I'm a university research fellow and lecturer, a teacher in a school for children with trauma-related mental health problems, a writer, a storyteller, and the property of a cat named Lottie. I'm also autistic and dyspraxic.

When I was sixteen years old, I wrote a book called Caged in Chaos: A Dyspraxic Guide to Breaking Free, a light-hearted guerrilla guide to adolescence and everything it throws at you. Since it came out I've been a regular guest speaker and trainer on autistic spectrum disorders, dyspraxia, and other specific learning difficulties (SpLD). Whoever you are - a parent of a struggling child, a teacher wondering how to support the SpLD students in your class, or a person with SpLD yourself - I hope you will find something useful and encouraging on my site. Learn more here.
THINGS YOU'LL LEARN FROM THIS EPISODE:

The primary challenges children and teens with dyspraxia face while growing up

Practical tips for supporting teens with dyspraxia

What Victoria believes schools and society can do better to support kids with learning differences

How Victoria's experience with dyspraxia has influenced her as a special education teacher

The most important considerations for parents of newly diagnosed dyspraxic children
RESOURCES MENTIONED:

Victoria Biggs professional / academic website

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TPP 174: Victoria Biggs Shares Her Story of Being Dyspraxic

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Today's episode is about dyspraxia, a developmental disorder which is most often associated with challenges related to motor coordination but is also often marked by disorganization, clumsiness and poor short-term memory. My guest, Victoria Biggs, knows first-hand what it's like to grow up with dyspraxia.

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35 minutes

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Association for Child and Adolescent Mental Health

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Developmental Coordination Disorder - Professor Amanda Kirby

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At own pace

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Supporting individuals and families affected by dyspraxia/DCD

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This resource is a useful reminder of what a dyslexia-friendly classroom should include.

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Home / Teacher Resources / Dyslexia Friendly Classrooms

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This resource is a useful reminder of what a dyslexia-friendly classroom should include. It can be printed for every classroom in the school and form the basis of a whole school policy.

This resource includes a PDF poster and link to further reading.

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Description

How can we support learners with literacy difficulties?

This resource is a useful reminder of what a dyslexia-friendly classroom should include. It can be printed for every classroom in the school and form the basis of a whole school policy. This will enable more inclusive learning environments. Good practice for dyslexia is good practice for everyone. This resource will also benefit some pupils with other special educational needs as well as other pupils with literacy difficulties.

This resource includes a PDF poster and link to further reading.

Only logged in customers who have purchased this product may leave a review.

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Children each learn and develop at their own pace, and reading is no different from other skill building. It's common for kids to find reading challenging at one point or another. But if learning to read becomes an ongoing struggle that leaves a child falling behind their peers, it's possible that they have a learning disorder known as dyslexia.

Dyslexia is most commonly associated with trouble learning to read. It affects a child's ability to recognize and manipulate the sounds in language. Kids with dyslexia have a hard time decoding new words, or breaking them down into manageable chunks they can then sound out. This causes difficulty with reading, writing and spelling. They may compensate by memorizing words, but they'll have trouble recognizing new words and may be slow in retrieving even familiar ones.

Dyslexia is not a reflection of a child's intelligence - in fact it's defined as a gap between a student's ability and achievement. Some youngsters with dyslexia are able to keep up with their peers with extra effort at least for the first few grades. But by the third grade or so, when they need to be able to read quickly and fluently in order to keep up with their work, they run into trouble.

With help and strategies for compensating for their weakness in decoding, students with dyslexia can learn to read and thrive academically. But dyslexia is not something one grows out of.

How common is dyslexia?

It is estimated that as many as one in five kids has dyslexia, and that 80 to 90 percent of kids with learning disorders have it. Sally Shaywitz, MD, co-director of the Yale Center for Dyslexia and Creativity, notes that many children go undiagnosed as struggles in school are incorrectly attributed to intelligence, level of effort or environmental factors.

Although experts used to say that dyslexia occurred more often in boys than in girls, current research indicates that it affects boys and girls equally.

A young person with dyslexia may:

Struggle with learning even simple rhymes

Have a speech delay

Have trouble following directions

Repeat or omit short words such as and, the, but

Find it difficult to tell left from right

In school, children with dyslexia are likely to:

Have difficulty sounding out new words

Lack fluency compared to other children their age

Reverse letters and numbers when reading (read saw as was, for example)

Find it difficult to take notes and copy down words from the board

Struggle with rhyming, associating sounds with letters, and sequencing and ordering sounds

Stumble and have difficulty spelling even common words; frequently they will spell them phonetically (hrbr instead of harbor)

Avoid being called on to read out loud in front of classmates

Become tired or frustrated from reading

Dyslexia affects children outside of school as well. Kids with dyslexia may also:

Find it difficult to decode logos and signs

Struggle when trying to learn the rules to games

Have difficulty keeping track of multi-step directions

Struggle with getting the hang of telling time

Find it especially challenging to learn another language

Become incredibly frustrated, which can effect their mood and emotional stability

Social and emotional impacts of dyslexia

Dyslexia affects a lot more than reading - it can also impact a child socially. "A dyslexic person who has word-finding difficulties can have trouble with their expressive language," says Scott Bezsylko, the executive director of Winston Preparatory School, which specializes in teaching kids with learning disorders. "That has a social impact, in addition to your difficulties with reading and writing, that make you feel not so good about yourself."

Kids with dyslexia - particularly those who have yet to be diagnosed - often suffer from low self-esteem because they worry that there is something wrong with them, and are often accused of not trying hard enough to learn to read. "A lot of our work with dyslexic kids is to help them rediscover that they are smart and capable," notes Beszylko, "because they've stopped believing in themselves."

How is dyslexia diagnosed?

If your child isn't meeting expectations for reading, as parents you can ask the school district to perform an evaluation and share the results with you. The evaluation will test your child's intellectual capacity and reading skills, to see if there is an achievement gap. It should also rule out other potential causes like environmental factors or hearing impairment.

The school should then make recommendations on how they can support your child and maximize her learning.

If you are unhappy with the quality of the evaluation, you can also secure a private evaluation by a psychologist, a neuropsychologist, a reading specialist, a speech and language therapist, an educational evaluator or a school psychologist. This external evaluation can also be used to advocate for your child and get the accommodations and services she might need.

When should a child be evaluated?

Dyslexia can begin to reveal itself at a young age, and there are preschool evaluations that look at the child's awareness of the sounds that make up words, and ability at word retrieval. However, Matthew Cruger, PhD, a clinical neuropsychologist at the Child Mind Institute, suggests waiting until kids are at least six years old and have had some formal instruction in reading to seek out a formal evaluation.

But Dr. Shaywitz notes that as soon as a gap between intelligence and reading skills is apparent - and evidence shows it can be seen in first grade - it's a good idea to get help. Schools sometimes encourage parents to wait until the third grade to see if their child truly needs an intervention, but Dr. Shaywitz argues that the earlier intervention is important not only to help kids catch up but to boost their fragile self-image, which is damaged by continuing struggle in school and comparisons with peers.

How to help kids with dyslexia

A dyslexia diagnosis does not mean your child will never learn to read. Dr. Cruger says there are a number of programs that can help, which might include these features:

Multi-sensory instruction in decoding skills

Repetition and review of skills

Intensity of intervention - that is, more than being pulled out of class once a week for extra help

Small group or individual instruction

Teaching decoding skills

Drilling sight words

Teaching comprehension strategies, to help kids derive meaning from what they're reading

Reading programs that been shown to help kids with dyslexia include:

Dr. Cruger points out that traditional tutoring may actually be counter-productive for a child with dyslexia, particularly if it is not a positive experience. "If the child hates the experience of reading help, it's not helpful," Dr. Cruger notes. "And it's not treating the source of the problem, the decoding weakness."

Instead, Dr. Cruger emphasizes that one of the most important ways to help kids with dyslexia is to make them more comfortable reading. This can be done in part by celebrating even small victories and accomplishments, while focusing less on correcting their errors.

Accommodations for kids with dyslexia

Kids with demonstrated dyslexia are eligible for accommodations in school. "Dyslexia robs a person of time," Dr. Shaywitz explains, "and accommodations give the time back to her." Accommodations may include:

Extra time on tests

A quiet space to work

The option to record lectures

The option to give verbal, rather than written, answers (when appropriate)

Elimination of oral reading in class

Exemption from foreign language learning

Other ways to support a child with dyslexia

One of the best ways to support a child with dyslexia - or any child who is struggling - is to encourage those activities that they like and feel good at, whether it is music, joining a sports team or anything else that helps build her confidence.

To help reinforce that dyslexia is not a marker of intelligence, it can also be helpful to talk about successful people - like Whoopi Goldberg and Steven Spielberg - who have also been diagnosed with dyslexia.

Other things that may help your child with dyslexia include:

Listening to audio books as an alternative to reading

Typing on a computer or tablet instead of writing

Apps that can make learning fun by turning decoding into a game

Using a ruler to help kids read in a straight line, which can help keep them focused

Emotional support

Dyslexia can result in frustration, embarrassment, avoidance and low self-esteem as a result of difficulties performing tasks that seem to come naturally to others. Demystifying the learning disorder with your child can help him develop the tools - and resilience - necessary to manage it, both in school and in social circumstances. Some things you can do to help include:

Discuss the specific challenges that result from dyslexia: "You know how you have a hard time reading signs or copying notes from the board? That's dyslexia."

Acknowledge their effort and celebrate hard work, even if there are still mistakes: "I know how difficult that reading homework was. I am so proud of how hard you tried."

Help them recognize their strengths: "You showed such great sportsmanship and teamwork in the soccer game the other night, and that was a great goal you scored!"

Combat negative self-talk: If your child starts saying things like, "I'm just stupid," don't ignore it. Instead, check out these ideas for helping kids who are too hard on themselves.

Frequently Asked Questions

How does dyslexia work?

How common is dyslexia?

What helps students with dyslexia?

What are the signs of dyslexia?

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Understanding Dyslexia - Child Mind Institute

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Find out how to recognize dyslexia, the most common learning disability. The Child Mind Institute on how to help kids who have trouble learning to read.

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Free from Microsoft: dyslexia awareness 

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Free from Microsoft: dyslexia awareness 

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1 hour

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Educator Center Overview - Microsoft Learn Educator Center

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Microsoft Learn for Educators takes the best of Microsoft Learn online learning paths and helps you to bring instructor-led training materials from Microsoft into your courses. This program provides members with access to Microsoft ready-to-teach curriculum and teaching materials aligned to industry-recognized Microsoft Certifications.

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Free from the OU: Dyslexia and inclusive practice

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Free from the OU: Dyslexia and inclusive practice

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3 hours

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Introduction to Dyslexia and Inclusive Practice is the first of three free online modules developed to complement the 2015 Education Scotland Route Map for Dyslexia and Inclusive Practice and support the professional standards from the General Teaching Council for Scotland.

This free module aims to provide teachers and local authority staff with an awareness of what dyslexia is, its impact and how it can be supported within an inclusive school community. It may also be of interest if you work in the vo luntary sector or simply have an interest in dyslexia and inclusive practice.

If you complete the module, you will receive a digital badge and a Statement of Participation (which can take up to 24 hours to be issued to your email address and appear in your profile).

To enrol on this module, sign in first then click on the enrol button (the grey button alongside the social media buttons).

If this is your first visit to the site, you need to register for a free account via the 'Sign up / Sign in' button. Please open it in a new tab or window, follow the instructions to register an account then once your new account is created, return to this page in your browser rather than following the 'return to the page you were on' button in the registration screens (and login via the 'Sign up / Sign in' button), then click on the Enrol button for this module.

Please note: if you download the Word or PDF version of the learning materials to study offline and return to complete the quizzes which can only be done online, you will need to click through the online version of the learning materials to complete the criteria for your digital badge.

This course was originally published on 28 March 2017. This is the updated version, revised in March 2021.

This is the first of three modules by Dyslexia Scotland and Addressing Dyslexia with the support of the Opening Educational Practices in Scotland project.

The second module is Supporting Dyslexia, Inclusive Practice and Literacy.

The third module is Dyslexia: Identification and Support.

Dyslexia Scotland would like to offer people who have completed the 3 Modules the opportunity to sign up for free electronic membership with Dyslexia Scotland, as a way of continuing to build on their professional learning.
Dyslexia Scotland
Addressing Dyslexia Toolkit
Opening Educational Practices in Scotland

Gain a digital badge

By studying the course you will have the opportunity to gain a digital badge - you need to click on the 'Enrol' button to be able to do the quizzes and earn the badge.

This course is part of a collection

This course is part of a collection of courses called Dyslexia Scotland. There are 7 courses in this collection so you may find other courses here that maybe of interest to you.
See this collection

After studying this introductory module and participating in the tasks you will have an awareness of:

The education context in Scotland and the national agenda

What dyslexia is and its impact

Dyslexia and inclusive practice

Effective communication

How dyslexia is identified

Information and practical support strategies

If this is your first visit to this site, you need to register for a free account, then login on this site and click on the Enrol button for this course.

Course content

Below is the course content. You can click on any section here and it will take you through to this section of the course.

If this is your first visit to this site, you need to register for a free account, then login on this site and click on the Enrol button for this course.

22 reviews for this course

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If this is your first visit to this site, you need to register for a free account, then login on this site and click on the Enrol button for this course.

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website: introduction to dyslexia and inclusive practice

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OLCreate: Introduction to Dyslexia and Inclusive Practice 2.0 Introduction to Dyslexia and Inclusive Practice

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Ratings 4.1 out of 5 stars You can start learning at any time. By signing up and enrolling you can track your progress and earn a Statement of Participation upon completion, all for free.

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An in-depth talk about dyslexia with practical advice

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An in-depth talk about dyslexia with practical advice

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23 minutes

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Michael Rosen talks in depth about dyslexia: what it is, how to understand it and useful advice for parents and teachers, with expert Professor Maggie Snowling CBE, President of St John's College, Oxford.
Producer Beth O'Dea.

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Michael Rosen talks in depth about dyslexia with expert Professor Maggie Snowling.

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Understanding dyslexia and literacy difficulties 

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Understanding dyslexia and literacy difficulties 

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23 minutes

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See dyslexia differently (a short animation)

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See dyslexia differently (a short animation)

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3 minutes

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15 minutes

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What is Dyslexia? - The Dyslexia Association

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Dyslexia is a learning difficulty that primarily affects the skills involved in accurate and fluent word reading and spelling. Characteristic features of dyslexia are difficulties in phonological awareness, verbal memory and verbal processing speed. Dyslexia occurs across the range of intellectual abilities. It is best thought of as a continuum, not a distinct category, and there are no clear cut-off points. Co-occurring difficulties may be seen in aspects of language, motor coordination, mental calculation, concentration and personal organisation, but these are not, by themselves, markers of dyslexia. A good indication of the severity and persistence of dyslexic difficulties can be gained by examining how the individual responds or has responded to well-founded intervention.

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10 minutes

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Dysgraphia is a Greek word. The base word graph refers both to the hand’s function in writing and to the letters formed by the hand. The prefix dys indicates

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How to support children with dysgraphia 

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How to support children with dysgraphia 

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70 minutes

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Or click on your preferred podcast player link!

Welcome to the show notes for Episode 31 of the OT Schoolhouse Podcast.

Just when Dyslexia seemed to be the new buzzword in IEP meetings, Dysgraphia and Dyscalculia joined in on the fun. Dysgraphia, especially, has cemented itself into the confines of the Occupational Therapy world. If there is an IEP team using the word Dysgraphia, there is sure to be an OT evaluation to follow.

In this episode of the OT Schoolhouse Podcast, Jayson interviews the author of the Handwriting Brain-Body DisConnect, Cheri Dotterer, MS, OTR/L.

Cheri has been an Occupational Therapist for over 20 years. Much of that time has been serving students who have been referred to her for handwriting concerns. With that said, it was her own children's struggles that really got her into studying Dyslexia, Dysgraphia, and Dyscalculia.

Listen in on this episode to learn how Cheri defines Dysgraphia and explains what the six types of Dysgraphia are. She also shares how we as OTs can help students to overcome some of the problems they face by using the Motor Learning Model and The Sensory Integration Model.

Quick reminder: Links to Amazon.com and other websites on this page may be affiliate links. Affiliate links benefit the OT Schoolhouse at no additional cost to you. I appreciate your support by using these links.

The below references were mentioned throughout Episode 31

Handwriting Brain-Body DisConnect:

Adaptive teaching techniques to unlock a child's dysgraphia for the classroom and at home

By Cheri Dotterer, MS, OTR/L

Be sure to subscribe to the OT Schoolhouse email list & get access to our free downloads of Gray-Space paper and the Occupational Profile for school-based OTs.

Have any questions or comments about the podcast? Email Jayson at Jayson@otschoolhouse.com

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OTS 31: Unpacking Dysgraphia Featuring Cheri Dotterer, MS, OTR/L

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Episode 31 of the OT Schoolhouse Podcast

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6 minutes

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5 minutes

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At a glance

Dysgraphia refers to a challenge with writing.

It impacts skills like handwriting, typing, and spelling.

There are many ways people with dysgraphia can improve their writing skills.

Dysgraphia is a term that refers to trouble with writing. Many experts view dysgraphia as challenges with a set of skills known as transcription. These skills - handwriting, typing, and spelling - allow us to produce writing.

Trouble expressing your thoughts in writing isn't formally recognized as part of dysgraphia. That's a learning disability known as written expression disorder. But when people struggle with transcription, it can get in the way of thinking about ideas and how to convey them.

For example, people with dysgraphia may write more slowly than others. That can affect how well they express themselves in writing. Plus, they tend to have trouble with spelling because it's hard for them to form letters when they write.

Dysgraphia isn't a matter of intelligence. The challenges are often caused by trouble with motor skills. Those skills can improve with help. And people with dysgraphia may also be eligible to use accommodations at work or at school.

About the author

About the author

The Understood Team is made up of passionate writers and editors. Many of them have kids who learn and think differently.

Reviewed by

Reviewed by

Charles A. MacArthur, PhD is a professor emeritus of special education. He researches writing instruction, self-regulated strategies, and assistive technology.

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Dysgraphia is a writing challenge that affects skills like handwriting, typing, and spelling. It's not technically a learning disability, but it can affect learning.

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15 minutes

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What is global development delay?

The term 'developmental delay' or 'global development delay' is used when a child takes longer to reach certain development milestones than other children their age.

This might include learning to walk or talk, movement skills, learning new things and interacting with others socially and emotionally.

Someone with another condition, like Down's syndrome or Cerebral palsy, may also have Global developmental delay.

Global development delay and learning disability

For some people, the delay in their development will be short term and can be overcome with additional support or therapy.

In other cases the delay may be more significant and the child will need ongoing support. This indicates they may also have a learning disability A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things. .

GDD

GDD is a commonly used abbreviation of global development delay

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The term 'developmental delay' or 'global development delay' is used when a child takes longer to reach certain development milestones than other children their age.

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5 minutes

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www.pinterest.co.uk/douglassilas/_created/"WHAT IS GLOBAL DEVELOPMENTAL DELAY?"
Global Developmental Delay (GDD) is the general term used to describe a condition that occurs during the developmental period of a child between birth and 18 years. It is usually defined by the child being diagnosed with having a lower intellectual functioning than what is perceived as 'normal'. It is usually accompanied by having significant limitations in communication. It is said to affect about 1-3% of the population.

"WHAT ARE THE CAUSES OF GLOBAL DEVELOPMENTAL DELAY?"
The most common causes of GDD are chromosomal and/or genetic abnormalities such as Down's Syndrome and Fragile X Syndrome or abnormalities with the structure or development of the brain or spinal cord such as Cerebral Palsy or Spina Bifida.

Other causes can include prematurity - being born too early - or infections, such as Congenital Rubella or Meningitis.

There are a number of diagnostic tests that can be done to identify the underlying cause of GDD. Sometimes these causes can be treated to cure the developmental delay, or at least to prevent it worsening. However, often the cause is never able to be fully determined.

"WHAT ARE THE SIGNS OF GLOBAL DEVELOPMENTAL DELAY?"
The most common signs of GDD include:

The child is unable to sit on the floor without support by 8 months;

The child is unable to crawl by 12 months;

The child has poor social skills/ judgment;

The child is unable to roll over by 6 months;

The child has communication problems

The child has fine/ gross motor difficulties

The child shows aggressive behavior as a coping skill

In some children GDD is suspected soon after birth because of feeding difficulties or muscle-tone. In others it is suspected later when learning or behaviour difficulties occur at school.
"IS THERE ANY TREATMENT FOR GLOBAL DEVELOPMENTAL DELAY?"
There is no single treatment for GDD but there are ways to help some of the conditions that may be causing the delay. Once a pediatrician or neurologist has completed testing of the child, he/ she may advise on treatments for whatever underlying medical conditions that may exist. For example, hearing or visual impairment or therapeutic input by a Speech and Language Therapist, Occupational Therapist and Physiotherapist. It is possible that no cause will be found or that the cause that is identified may be difficult, if not impossible, to treat.

On the other hand, being aware of the conditions that are causing the delay can help parents, teachers and medical professionals to better counsel and guide children who are experiencing developmental problems.

For further information about Global Developmental Delay click here to visit our Pinterest board.

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"The hope you give parents ​is nothing short of a miracle" [a previous client]

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Support children with developmental disabilities to reach their potential

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Support children with developmental disabilities to reach their potential

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12 hours

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The course is designed for healthcare professionals who may provide care for children with developmental disabilities, or other groups interested in the healthcare needs of these children. The course will be of particular benefit to:

* Clinicians (e.g. nurses, doctors, allied professionals), community health workers, healthcare managers and Non-Governmental Organisation (NGO) staff who provide treatment and care for children with developmental disabilities

* Other clinicians, professionals, researchers and students with an interest in healthcare services for children with developmental disabilities

* Teachers and other educators who want to learn about the health of children with developmental disabilities and their right to education, inclusion and social protection

* Trainers in academic institutions who are aiming to develop a practical course for healthcare providers in their setting

* Parents and relatives of a child with a developmental disability, who may be looking to learn more about a child's healthcare needs

* Adults with a developmental disability, who may want to understand more about their own health and healthcare services

The course focuses on issues relevant to both high income and low- and middle-income countries and information can be adapted to your personal setting. Course materials will draw on examples from a variety of contexts, including Brazil, UK, India, and Zambia.

We look forward to welcoming learners from across the globe. Our aim is to develop a multidisciplinary network of learners, with a diverse range of experience, from which we all can learn.

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Children with Developmental Disabilities - Online Health Course

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Learn the importance of improving access to healthcare for children with developmental disabilities with this online healthcare course from LSHTM.

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25 minutes

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5 minutes

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10 minutes

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*Also known as Global Developmental Delay

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Online course from the (RCSLT) The Royal College of Speech and Language Therapists.

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Online course from the (RCSLT) The Royal College of Speech and Language Therapists.

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Own pace

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About Mind Your Words

Mind Your Words (children and young people's mental health) is a free e-learning tool designed for professionals working with children and young people.

The tool aims to improve understanding of children and young people who have both mental health needs (or social emotional and mental health needs - SEMH) and speech, language and communication needs (SLCN). This is made all the more important during the COVID-19 pandemic, as research suggests it has had an effect on everyone's mental health, including children.

The online training highlights the links between mental health and communication and outlines how professionals can work together to remove communication barriers and help these children and young people achieve their potential.

The course consists of 15 modules, of which the first five apply to all settings. You will need to complete the first five modules, which cover the information we think everyone needs to know to, in order to unlock the other modules. After that you are free to choose which modules you feel are relevant.

Each module takes between 10 and 20 minutes to complete.

Access the tool

The course can be accessed via the RCSLT e-learning site. You do not have to be a member of the RCSLT in order to sign up - you can register on the sign-up page.

It can be completed in any order, at your own pace - the modules will save your progress so you do not have to do it all at once.

The course is completely remote, which:

saves learner's time away from work (which is often hard to arrange).

saves learner's travel costs, compared to attending a face-to-face course.

In addition the RCSLT is delighted to be able to offer it free of charge.

What's in the e-learning?

Mind Your Words is a series of modules. The first five modules are required, but once you've completed these, you can choose as many of the remaining modules as you'd like.

The five core modules explain what speech, language and communication needs are, what social, emotional and mental health needs are, and how to recognise them, as well as how they are interrelated and some general strategies you can put in place.

The remaining modules look in more detail at ways you can support children and young people, including getting support from speech and language therapy, working collaboratively, modifying risk assessment and de-escalation techniques, becoming a communication accessible service and much more.

Visit rcsltcpd.org.uk to take the e-learning course.

Module list

You will need to log in or register on the RCSLT's e-learning site to access these modules.

Module 1: Introduction - Find out what this learning journey will cover, how to use it, and how it was written and created.

Module 2: What are SLCN and SEMH? - Find out what speech, language and communication needs are, what social, emotional and mental health needs are, and how to recognise them.

Module 3: Risk and resilience - Investigate the benefits of good communication skills on resilience, and the impact of communication difficulties on mental health and skill development.

Module 4: What if young people have SLCN and SEMH? - Explore why language skills are necessary for good mental health, and how SLCN can bring additional risks and problems for mental health.

Module 5: Universal strategies for SLCN - Find out what universal strategies are and how to use them to support children and young people.

Module 6: What speech and language therapy (SLT) can contribute - The role of the speech and language therapist, the settings they work in and sort of work SLTs do, evidence based interventions and the benefits of SLT.

Module 7: Collaboration - What is collaboration? Why and how to collaborate? Why doesn't collaboration always work?

Module 8: Identification and assessment of SLCN - Why assess a child or young person's speech language and communication skills? Who should we assess? Types of assessment used by SLTs, and problems with assessment. Things to notice (indicators of SLCN), and how to include the views of children and young people.

Module 9: Becoming a communication accessible setting - Adopting the Communication Access Standards, meeting the 5 Good Communication Standards

Module 10: Asking the right questions - Why questions can be problematic for children and young people (CYP) with speech, language and communication needs (SLCN). How to make answering questions comfortable and how to ask questions that a child or young person with SLCN can understand and answer.

Module 11: Communication in de-escalation and de-briefing - What do stress and conflict do to the brain and communication skills? How can we communicate to help someone feel safe and to calm down? How to help a child or young person develop the language skills to cope in stressful situations.

Module 12: SLCN, SEMH and risk assessment - Revision of the general risks of speech, language and communication needs (SLCN). Thinking about specific risks for children and young people with SLCN in relation to behaviour that challenges, and how to design a risk assessment including SLCN.

Module 13: Developing a service for SLCN and SEMH - A model of interventions in services. What speech and language therapy can contribute. Including the views of children and young people in planning support and ways to help them better engage with support.

Module 14: What's the story? The importance of narratives for mental health - Why is storytelling important? What skills are needed to tell a story? The impact of speech, language and communication needs (SLCN) on stories/narratives, and how we can help children and young people develop narrative skills.

Module 15: Making interventions accessible - Why do we need to make interventions accessible? How does language make things inaccessible or accessible? Some solutions and examples.

Access the full programme at rcsltcpd.org.uk.

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Mind Your Words - mental health e-learning course | RCSLT

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A free online tool aimed at those working with children and young people with mental health and communication needs.

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CPD Online Short Course: An introduction to speech, language and communication

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CPD Online Short Course: An introduction to speech, language and communication

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Own pace

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40 minutes

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3 minutes

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The Communication Commitment - supporting pupils with SLCN

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30 minutes

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Herefordshire and Worcestershire Health and Care NHS Trust

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What is SLCN?

Speech, language and communication needs (SLCN) is the term given to describe the extensive range of needs related to all aspects of communication - from understanding others to forming sounds, words and sentences to expressing ideas and emotions and using language socially.

It is estimated that 10% of all children have long term or persistent speech, language and communication needs (SLCN) - the most prevalent special educational need identified by primary schools. In Worcestershire this figure is equivalent to 12,000 children and young people aged 0-19 years, with over 6,000 children and young people known to the Speech and Language Therapy Service. Some schools in deprived areas of Worcestershire have identified 50% of all 5 year olds entering school with delayed receptive language skills.

Download the Worcestershire SLCN Pathway Fact Sheets [PDF] using the links below
2.1 What is SLCN [pdf] 2.2 What is the impact of SLCN [pdf] 2.3 SLCN and SEN [pdf]
Useful links

The Communication Trust is a coalition of nearly 50 voluntary and community organisations with expertise in speech, language and communication. The Trust raises awarenesss of SLCN, promotes best practice amongst the children's workforce and provides an extensive range of information about SLCN.

The SEND Gateway is an online portal offering professionals free, easy access to high quality information, resources and training for meeting the needs of children with SEND.

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Herefordshire and Worcestershire Health and Care NHS Trust

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60 minutes

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Speech and Language UK: Changing young lives

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Difficulties with speech sounds can include:

Muscles used to create different sounds. This can be due to muscle weakness and may be linked to conditions such as cerebral palsy.

Sending messages from the brain to make different speech sounds. This may sometimes be described as 'dyspraxia'.

Learning and using different sounds to make words. This can be called 'phonological difficulties'.

Phonological difficulties

Some children have difficulty in learning and using sounds in the right places for words.

Usually, most children will be using a full range of speech sounds by the time they are 5 years-old. Some children, however, will have difficulty in developing these skills. Primary-aged children may be experiencing difficulties if they:

Only use a small number of sounds.

Are swapping one sound for another e.g saying 'tat' instead of 'cat'.

Are missing the ends off words.

Have difficulty with vowel sounds e.g. saying 'poor' instead of 'pear' or 'pot' instead of 'pat'.

Have difficulty with long or complicated words like 'banana' or 'aeroplane'.

Good sound skills are needed when learning to talk. They are also important for developing reading and spelling.

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Difficulties with speech sounds can include: Muscles used to create different sounds. This can be due to muscle weakness and may be linked to conditions such as cerebral palsy. Sending messages from the brain to make different speech sounds. This may sometimes be described as 'dyspraxia'. Learning and using different sounds to make words.

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A general section on Speech, Language & Communication needs

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2 hours

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What is Sensory Processing Disorder and how it might affect your child?

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Learn what sensory processing disorder is and how differences with processing sensory information affect attention, behavoiur and learning.

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1 hour

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Free online sensory processing course for teachers, assistants and parents

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GriffinOT's free sensory course gives an introduction to the senses and sensory processing. It helps educators and parents to understand sensory behaviours.

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35 minutes

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Sensory Processing Disorder with Nancy Peske - On Boys Podcast

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Do you know what sensory processing disorder (SPD) is? 5-15% of all children exhibit symptoms of SPD, Learn how to recognize & respond to sensory issues.

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3 minutes

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Understanding sensory processing issues 

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Understanding sensory processing issues 

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60 minutes

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Sensory processing issues are difficulties with organizing and responding to information that comes in through the senses. Kids may be oversensitive to sensory input, undersensitive, or both.

What are sensory processing issues? The term refers to trouble managing information that comes in through the senses. These issues, sometimes called sensory processing disorder or sensory integration disorder, can have a big impact on learning and on everyday life.

This guide can answer basic questions about sensory processing issues. You'll also find expert advice, strategies to use at home, and information on the best supports for your child at school.

Snapshot: What sensory processing issues are

In some people, the brain has trouble organizing and responding to information from the senses. Certain sounds, sights, smells, textures, and tastes can create a feeling of "sensory overload." Bright or flickering lights, loud noises, certain textures of food, and scratchy clothing are just some of the triggers that can make kids feel overwhelmed and upset.

There are two types of sensory processing challenges, and many kids experience a mix of the two. One is oversensitivity (hypersensitivity). This leads to sensory avoiding - kids avoid sensory input because it's too overwhelming. The other is undersensitivity (hyposensitivity). This causes kids to be sensory seeking - they look for more sensory stimulation.

Often, kids with sensory processing issues are oversensitive. They try to avoid sensations they find intolerable.

But some kids seek more sensory input, not less. They may want to touch things and feel physical contact and pressure. They may also be undersensitive to pain and have an unusually high tolerance for it. That's why they may prefer playing rough and not understand if they're hurting someone.

Some kids may be both sensory avoiding and sensory seeking. They may be oversensitive to some sensations, and undersensitive to others. A child's reactions can also change from one day to the next, or even throughout the day, depending on the environment or situation.

Sensory processing issues aren't a specific learning disability. But they can still have a large impact on learning.

Sensory processing issues signs and symptoms

What you or your child's teacher might see depends on two things. The first is the trigger - the sensory input that's overwhelming your child. The second is the type of sensory processing challenge your child has.

Kids who are sensory avoiding may react to a wide range of triggers. These can include loud sounds, uncomfortable clothing, crowded spaces, or certain food smells or textures, among others. Whatever the trigger, the reaction can sometimes be extreme.

Here are some other signs you might see in your child:

Is easily overwhelmed by people and places

Seeks out quiet spots in noisy, crowded environments

Is easily startled by sudden noises

Is bothered by bright light

Refuses to wear itchy or otherwise uncomfortable clothing

Avoids touching people or hugging them

Has a strong reaction to the texture or smell of certain foods

Refuses to try new foods and has a very limited diet of preferred foods

Gets upset about small changes in routine or environment and avoids trying new things

Kids who are undersensitive to sensory input have the opposite situation. They often have a need for movement. And they may seek out input like spicy or sour tastes and physical contact and pressure.

Here are some other signs you might see in your child at different ages:

Constantly touches objects

Plays roughly and takes physical risks

Has a high tolerance for pain

Often squirms and fidgets

Is constantly on the move

Invades other people's personal space

Often gets distracted or feels anxious

Is clumsy and uncoordinated

Keep in mind that kids aren't always one or the other. Some kids may be sensory seeking in certain situations and sensory avoiding in others, depending on how that child is coping or self-regulating at the time. That's why it's so important to observe your child's reactions and to try to anticipate what triggers them.

What can co-occur with sensory processing issues

Sensory processing issues aren't a diagnosis on their own. But they often co-occur with two conditions: ADHD and autism. Kids don't have to have ADHD or autism to have sensory processing issues, however.

Some of the signs of ADHD may look similar to the signs of sensory processing issues. Kids with either of these conditions might need to be in constant motion, for instance. But the reasons would be different.

Possible causes of sensory processing issues

Researchers are looking into biological reasons for these issues. Some research suggests they can be genetic. Researchers are also looking into birth complications and other environmental factors. But so far, there's no known cause of sensory processing issues.

ADHD and autism often co-occur with sensory issues. They don't cause them, however.

How sensory processing issues are diagnosed

Sensory processing issues aren't a formal diagnosis, although they used to be diagnosed as "sensory processing disorder." You might hear a professional evaluator say something like, "Your child has trouble processing sensory information."

There are a few tests professionals can use to identify sensory processing issues. These include Sensory Integration and Praxis Tests (SIPT) and the Sensory Processing Measure (SPM) checklist.

Occupational therapists (OTs) are often qualified to identify and create treatment plans for sensory challenges in kids. Other professionals may be able to identify sensory processing issues, too. These include:

How professionals can help with sensory processing issues

There are no medications for sensory processing issues. But there are professionals who can help your child learn strategies to cope with sensory challenges.

OTs often work with kids with sensory issues. They help kids find ways to be less overwhelmed by sensory input. You may have heard of a treatment known as sensory integration therapy. But more often therapists might create what's called a sensory diet.

This is a tailored plan of physical activities. It helps kids learn to calm themselves and regulate their behavior and emotions. And that makes them more open to learning and socializing.

Here are some things that might be included in a sensory diet:

Jumping jacks

Rolling on a therapy ball

Push-ups

Hopping up and down

Climbing ladders and going down slides

At school, your child might be able to get accommodations through a 504 plan. (If your child has an IEP for another issue, it could include accommodations for sensory issues, too.) The teacher may also give your child informal supports.

Classroom accommodations to help kids with sensory processing issues might include:

Allowing your child to use a fidget

Providing a quiet space or earplugs for noise sensitivity

Telling your child ahead of time about a change in routine

Seating your child away from doors, windows or buzzing lights

Allowing your child to take exercise breaks to self-regulate

How you can help your child with sensory processing issues

It's important to find support for you, too:

Key takeaways

Kids with sensory processing issues can be oversensitive, undersensitive, or both.

Occupational therapists can help kids learn to manage their sensory challenges.

Understanding your child's reactions and triggers is key to helping your child cope.

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What is sensory processing disorder, and how does it affect kids? Use this comprehensive guide to understand sensory processing disorder in children.

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Sensory Processing Difficulties

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60 minutes

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45 minutes

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We are delighted to bring you the second podcast in our series that focuses on Tourettes Syndrome. Dr. Seonaid Anderson will be talking to leading players in the field, rising stars of research, clinicians, and experts by experience. She'll be discussing the latest evidence-based research, what's in the pipeline, together with insights for mental health professionals, those working with young people and tips for parents.

'In Conversation Tourettes Syndrome' continues with Lucy Toghill, education manager of Tourettes Action discussing 'Education, and Educating, about Tourettes'.

You can listen to this podcast directly on our website or on the following platforms; SoundCloud, iTunes, Spotify, CastBox, Deezer, Google Podcasts and Radio.com (not available in the EU).

Lucy Toghill

Lucy Toghill is an education manager for Tourettes Action. Lucy works part time and consults with schools and education professionals to optimise understanding of and support for pupils with TS. Lucy worked in mainstream schools as a primary school teacher for 15 years before joining Tourettes Action; and she has a son with TS. Bio taken from Tourettes Action.

Seonaid is a chartered research psychologist and freelance neurodiversity consultant with many years experience in neurodevelopmental disorders. She provides support to research professionals at every stage of the research process and to healthcare experts in their clinical work, for individuals, universities as well as the public sector. She provides specialist advice and guidance on the treatment and management of a range of neurodevelopmental conditions such as autism spectrum disorders (ASD), attention hyperactivity disorder (ADHD), Tourette Syndrome, dyslexia, and mental health. She is on Twitter @Seonaidanderso2 and can be found on LinkedIn.

Transcript

Dr Seonaid Anderson: Hello, welcome to the Conversation series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I'm Doctor Seonaid Anderson, Charted research psychologist and neurodiversity consultant with expertise in Tourettes syndrome. I'm excited to be here today as this is the second in a series of podcasts that ACAMH is hosting on Tourettes syndrome. Over the course of this series, we'll be looking at the latest research based evidence, what's in the pipeline, together with insight from mental health professionals, those working with young people and tips for parents.

I'll be talking to leading players in the field, rising stars of research, clinicians and experts by experience. Today, I'm interviewing Lucy Toghill, who is the education manager at the charity Tourettes action. In her role, Lucy consults with schools and education professionals to optimize understanding of and support for pupils with Tourettes syndrome. Lucy has worked in mainstream schools as a primary school teacher for 15 years before joining Tourettes action, and she has a son with Tourettes Syndrome. Today, we're going to be talking about the role of schools and clinics or health professionals in the lives of young people with Tourettes syndrome or tic disorders. Lucy, welcome.

Lucy Toghill: Thank you for having me today.

Dr Seonaid Anderson: Before we start, I'm just going to give a brief overview of what Tourettes syndrome or TS is. It's a neurological condition that is estimated to affect over 300000 children and adults in the UK, and that's one school child in every hundred. So which is the same prevalence of autism up about one percent. The main symptoms are physical and vocal tics, which typically develop in childhood. And tics can be simple, such as eye blinking and sniffing through complex movements and vocalizations that can, at the extreme end, be incredibly debilitating. For TS to be diagnosed, multiple motor trips and at least one vocal tic must be present for at least 12 months. Another issue that we'll discuss later is tics wax and wane and change in their nature across time. There is more information about TS on ACAMH website with a very useful topic guide. Lucy, I'd like to start by asking, how did you become interested in Tourettes Syndrome?

Lucy Toghill: I worked for a teaching school for many years and and through that developed a special interest for SEN very early on in my career, actually. And then I had my son, who's now 14, and he was diagnosed with Tourettes Syndrome when he was seven. It was a really tough time, not just to get the diagnosis, but especially getting the school to understand and get the right support in place for him. Tourettes Action really helped me and my family and I started volunteering for them at this time. And then the job came up and I went for it and I realised how important the role was actually and how important it could be to so many families. And so the role developed really into what it is now and we can now have so much support to family the schools, which is great.

Dr Seonaid Anderson:
And can you describe some of the work you do as education manager? You describe support. What does that look like?

Lucy Toghill: My main role is really to liaise with schools and parents to help them understand the needs of children with Tourettes Syndrome in school and to provide them with support and advice and teacher training and resources, really just to best support the child in question. Before covid, we do workshops around the UK for teachers to attend. Because of covid, I've sort of had to adapt that training to an online free training resource or online package for teachers that they can easily access. And we also do webinars by schools, teachers and parents to help get the information out there. That does sometimes mean that I am contacted by health professionals like educational psychologists, school nurses, mental health workers, CAMS and clinicians. They're all interested in knowing how best to support the children.

Dr Seonaid Anderson:
It sounds like you try and take the whole school approach, as it were, and try and get all the staff a little bit more knowledgeable about Tourettes Syndrome. It's not just of course teachers that the pupils come into contact with.

Lucy Toghill: Absolutely. I mean, it's really important that this is the case. And it's it's really important that a child is able to attend school. And in order to do that, we need to make sure that the child is fully supported, they're fully understood. They feel fully accepted by the whole school community, not just that class teacher. And, you know, it's important to remember that children are in school more than they are at home. You know, school's jobs to work alongside parents, to nurture these children, to become very balanced individuals as they develop into to adulthood and go off and find work in the real world, in the lives of the real world.

Lucy Toghill: If we had a child in school that had epilepsy, for example, or an allergy, we wouldn't allow that child to go to school unless the whole school had had training on how to deal with that specific condition and manage those situations much like Epipen training. You know, if a child, an allergy to all the teachers, would have to know how to equip themselves in Epipen training. So the same needs to be said for children with Tourettes Syndrome, really, in my eyes.

Dr Seonaid Anderson: Unless teachers fully understand those hidden barriers to learning that child with Tourettes Syndrome may have, then how are they going to be able to even begin to understand how that child learns and how best to teach them? So we really want our children to have full access to the curriculum and be able to reach their full potential like every other child. And the same goes for other children in school.

Dr Seonaid Anderson: Children are very accepting and researchable generally to diversity and differences. And and I see that every day in my job, you know, we get feedback from teachers that say that they've shown the class Tourettes session peer presentation that we provide and what a huge difference it has made to that child in question. We have to be led by each individual child and some children are happy to suppress or control their tics and don't want people knowing all about the condition. And we have to we have to accept that, too.

And you mentioned the peer presentation that Tourettes Action. Could you tell us a little bit more about what that looks like?

Lucy Toghill: Yeah, sure. I mean, it's really a PowerPoint presentation aimed at children, and it's something the child can get involved in. If you've got a child that's very confident and they want to lead a class talk or an assembly, they can absolutely do that. And that's lovely. But if you are a child or parent, the wants the information to be come across to the rest of the school, the class, and they may not want to be involved in that. And that's fine. But, you know, the teacher can then deliver that.

Dr Seonaid Anderson: And so the work that you do is sounds mainly school focused. But it also sounds like you've got lots of information that might be of interest to health care professionals. What's on offer specifically to that group of people?

Lucy Toghill: And we do encourage any health professional to take our training is focused on schools. I think there's a lot they can gain from that or attend one of my webinars and many do. We have lots of health professionals come along that many CAMS or mental health services. I think there is a lot to be done for these professionals in knowing what real life is like. You know, day to day for these children in school. Many of the charities, very closely with that support the co-occurring conditions, would would say exactly the same.

Dr Seonaid Anderson: Yes. And you mentioned the co-occurring conditions. These are commonly things like attention deficit hyperactivity disorder, ADHD, or obsessive compulsive disorder, OCD. And I think we've sort of found in the past that 80 to 85 percent of patients with Tourettes Syndrome also have these co-occurring conditions as well and sometimes can be, perhaps more problematic than the tics themselves. I guess we also used the term health care professionals to sort of meet anyone the young person might come into contact with during their journey through diagnosis and treatment.

So that be GPs, nurses, neurologists, psychiatrists, psychologists and also occupational therapists and pediatricians and any of those working in the CAMS Service, which we've mentioned already. I know that you and I have both spoken with parents who report these challenges of a school for children with Tourettes syndrome.

And you mentioned these hidden barriers to learning. Sometimes that these are quite sort of neglected areas. And it would be nice to talk to you a little bit about some of those. Have you found with teachers, for example, that it can often be difficult to tell what is a tic, which is actually a tic or what's the behavior. They might be quite difficult for them to tease them apart. And what is sort of naughty behavior? What would you say about that?

Lucy Toghill:
Yeah, absolutely, and that's the number one question, actually, that I get asked every time. If I go into a school or speak I to a school, teachers will often ask me, you know, is this a tic or is this neurotypical bad behavior, you know, and and it's often very difficult to unpick that at times. And even parents report and I know from my son in the very early days of diagnosis, I wasn't quite sure what was a tic, what was OCD, what was him being, you know, typically misbehaving. But it's really a question of getting to know that child. We need to spend time with this child at school.

Lucy Toghill: We need to ask the child, you know, I'm very pro pupil voice. I'm very pro teachers using a one page profile to explain to other teachers about their condition. And we want the child to be involved in that as much as we can really. We have had some teachers say that, you know, the child in question, it doesn't sound like a tic because they're being silly and everyone's laughing at them.

But, you know, what I said to teachers is let's consider this, you know, from a child's point of view is actually a little easier to be accepted in class, to be seen to be naughty than it is, to be seen to be ticing and apparently being seen by your friends being weird and different. So I think it's important just to let health professionals know and schools know that, you know, this can happen to children and to be aware of those children that are struggling in that way.

Dr Seonaid Anderson: We know that Tourettes syndrome has no effect on IQ. There's no cognitive deficit as it were. But there are issues with learning, I think a common theme is often that there are some executive functioning difficulties. Certain tics can actually interfere with learning. Is that also your experience?

Lucy Toghill: The symptoms of around Tourettes Syndrome can have a massive impact on the child's ability to learn, for example, hand tics. I mean, that would be quite obvious. If child's not able to write. If a child's got OCD, they might rip up their paper, scribble out their writing. We know that children have visual tics. They might be looking around the room and counting things, you know, and all the other co-occurring conditions that come along with that. And as you Seonaid, you know, it's not the tics themselves sometimes that all these barriers to learning but, you know, with ADHD, you've got the distraction and the lack of concentration and you mentioned executive function skills, Seonaid.

And that's that's really important. And this is something that doesn't affect every child, which was syndrome. But certainly when you talk to teachers and certainly in the work I do. An educational psychologist will probably back this up, really, from my experience. That executive function difficulties is something that we see commonly in children, with Tourettes Syndrome. And, you know, we're talking basically about these three main set of mental skills which are working memory, flexible thinking and self-control.

And these can affect things such as organizational skills, planning and focusing, starting or finishing tasks and moving from one task to another. So for this, we need to be modeling in school these set of skills and scaffolding that for children. And we need to be giving children the time to process their thought and giving time for pause and effect and keeping those expectations clear and consistent all the time.

Dr Seonaid Anderson: So that's the kind of academic side. But there's also this element with some people with Tourettes syndrome. And this is a bit of a myth that having a diagnosis of Tourettes syndrome means that you will have the swearing tic or coprolalia. But actually, research has found that only about 10 percent of people with Tourettes syndrome will have that coprolalia tic. But there can be, it can be challenging and confronting nature of that and also other tics as well, where it's not socially appropriate to say something like a tic will come out and affect on other students and teaching staff as well. Is that you've come across?

Lucy Toghill: I actually see a lot of children with coprolalia because it's actually one of the most difficult things to manage in schools, as you can imagine, with safeguarding. That's both for children and staff. You know, we've had staff that even though they've had the training, they totally understand that this condition is involuntary and there's no malice behind the tic. If you've got a child that is particularly obsessed with one staff member and they're picking out personal things about them, you know, their tics and making them say things about them, they're quite personal.

We need to take care of staff. You know, there may be times the staff are not happy with that all the time. We need to consider that, you know, I advise schools really to have a point of contact in school, in their pastoral team for someone that's trained that both students and staff can go to if they've been upset by someone's tics. And also another thing we ask or we suggest people put in place when schools ask us is that they possibly have a letter that they can send home to parents, obviously, with the permission of the child in question and their parents to help explain Tourettes syndrome and nip any bullying or complaints in the bud as soon as we get whiff of them. Schools, where possible, you know, we need to explain to other parents that the school is very supportive of this child, and they will be intending to make this child feel accepted by the whole community and possibly offer parents at coffee morning or afternoon to come in and talk about Tourettes and pick up some information and ask questions.

You know, we don't want this to be a hidden condition within the school because in the case of coprolalia, it is not going to be hidden at all. You know, it's going to be out there and it's going to be obvious to schools. So I think we need to address it and be open to parents, really.

Dr Seonaid Anderson: I know that from speaking to parents and teachers, other issues that come up for students with Tourettes syndrome, things like disinhibition, we've talked about OCD as well, and lack of control perhaps, and that could be oppositional behaviors to and rage is something that we hear often from parents. This is perhaps more commonly seen at home than in school. And that can be a point of difficulty as well, with behaviors being slightly different between home and school environments. And we know that different environments can set off tics or bring them to the fore. And sensory integration issues as well can be fairly common with young people with Tourettes syndrome as well.

Lucy Toghill: Yeah, definitely. I mean, you know, what I would say to clinicians and schools is that, you know, you've got a child say there's an eight year old child with Tourettes syndrome that's been diagnosed. They don't really understand quite yet how it affects their body, but what they do know is that they've got lots of involuntary movements going on and their body is making them say things they don't want to say and make sounds. So, you know, consider that children think, well, no wonder that child has a lot of rage going on if their body is doing things that they don't want it to do.

And as you said Seonaid, you know, environmental factors are huge in this. We know, you know, even adults have reported to us that a change of environment, a change of smell, heat, touch, hearing if there's a particularly acoustic sounding room, can all be triggers to setting off their tics. So, again, it's very important that we use people voice and we talk to the child about what their triggers may be. And that can be very hard for a child, with Tourettes, you know, a child may not know what their triggers are. We know about this premonitory urge, don't we? We know that, you know, some children and adults get that feeling before a tic comes. And that's something that therapist can work on for CBT.

Just draw on an example, I had before Seonaid, if that's OK, that, you know, I went into a school that thought a boy didn't like maths or he didn't like the maths teacher. And, you know, his tics really kick off in maths and actual fact, when we took this boy into the classroom, the math classroom, you know, without maths, without a teacher, we sent him where he sits.

And when we sort of tried to unpick what it was, it was trigging off his tics in that situation. And it came to that it was the chair he was sitting. And on the chair scratching on his school jumper. Now, I'm not saying this is is as easy as that, but we did we took away the chair and that he was much more settled in that class and less ticy. And as I said, I'm not saying it's easy and that easy in a situation, but do consider, you know, the effect that these environmental factors and sensory issues have on children with Tourettes syndrome because it's very common

Dr Seonaid Anderson: That such an interesting example as well. And we haven't actually talked yet, I think, about children Tourettes syndrome actually trying to suppress and control their tics while learning. That can also, I imagine, absorb a huge amount of energy and concentration from them to try and control their tics while they're in the classroom and also subsequently affect their learning. They may not be able to take everything in or have taken everything in regards to instructions and things like that, I would imagine.

Lucy Toghill: Absolutely Seonaid, yeah. I mean, we know that trying to suppress a tic, and children, you know, we encouraging schools not to suppress, because we know that that can possibly have a knock on effect. And we know that suppressing is very uncomfortable for people. That's what they report. And I'm actually suppressing is very tiring. So you may have a child in class that presents very disengaged and bored and not learning, and that may be dealt with through the behaviour. But actually consider that all the time that you would doing the input, you know, in school, that child may have been ticing. And when you're ticing children tell they can't concentrate because they're concentrating on that tic.

Or, you know, the flipside of that is when you're when you're suppressing, you know, it's not just ticing when you're suppressing your very tired and you're trying to hold that in. And that takes a lot of concentration. So either way, you know, that child is going to have difficulties concentrating. So it's really important that we address that in school and that the teacher acknowledges that so that they can go and help the child after and make sure that they've understood.

Dr Seonaid Anderson: We've been touching on this already, but could you talk a little bit more now about some of the termed reasonable adjustments that schools could be asked to make for a student with Tourettes syndrome.

Lucy Toghill: I mean, we know that schools have to be seen to be making best endeavours at school to meet all children's needs in school. They have a legal obligation to make what we call reasonable adjustments, as you mentioned. Now, most schools will be able to do that within their SEN budget, their current SEN budget. And most children with Tourettes syndrome to be fair, will be able to have access to this and most of their needs will be able to be met.

However, this does depend on the level of needs of the child. It is very rare that we see a child with just Tourettes syndrome in school with pure Tourettes. In fact, as you mentioned before, Seonaid, is just around 80 to 85 percent of children with Tourettes syndrome will have these conditions and the most common being ADHD, OCD and autistic spectrum disorder. So if a child is presenting with other more serious needs from one of these other conditions, then it may be that depending on their level of need, that schools are unable to meet their needs in the given budget that they have available to them.

And in this case, we would look into applying for what we call in EHCP, which is an educational health and care plan, which is a, this is a legal document wriiten by the local authority, which sets out all the support that the child needs and the provisions on how those needs are going to be met in school. Teachers will be responsible, really, for providing most of the evidence for that. But also all the health professionals involved in that child's care will be asked to submit reports and evidence to support that. And that could be educational psychologists, OTs, anyone that's had input in that will be asked to submit a report. Educational Health and Care plan will also set out outcomes that will follow the child through to the age of twenty five, which is brilliant.

And this will of course, indeed, come with funding sometimes, not all the time. But if, depending on the need comes with funding from the local authority to help those outcomes be achieved. As far as reasonable adjustments go, we would expect to see a child receiving school before educational health and care plan needs assessment would vary really. And we would expect that child to be receiving some support from maybe a teaching assistant. That's not to say, you know, certainly not one to one. Just some time with that teaching assistant to oversee the help they need. Work could possibly be differentiated for the child. Interventions could be put in place to promote positive mental health. And we know that a lot of that work is going on this year with the impact of covid. So our children are benefiting from that this year.

Another strategy we may put in place is permission for a child to leave the classroom if they become overwhelmed or feel the need to have a break. And let a few tics out somewhere private. And that's very important actually that's followed through. We don't want the child just walking around the corridor you know we need again using that pupil voice and making sure they understand the use of that tic pass and, and that maybe they want to take their work with them and go meet someone rather than just walking around the school. And train the staff, you know, and that's that's an important thing for them to have.

Dr Seonaid Anderson: For making me think about any challenges from students or their parents. Do you ever face challenges from students, their parents not wanting the school to know about their Tourettes syndrome, you know, maybe a student refusing the support or the accommodations because they don't want to be singled out as different. I can imagine it's probably adolescence or older adolescents that. Have you come across that?

Lucy Toghill: Yeah, I have in both primary and senior schools, actually. And it's as I mentioned in and we have come across families where they wish to not be different from their from other peoples and they wish not to have any special compensations for their disability. And we and we absolutely have to respect that, don't we? You know, we have to do our best to support those children in any way that we can that's acceptable to them.

And we know I mean, we know from studies mentioned that that doesn't always have the best positive outcome. You know, what are we showing that child? If we are teaching them, they've got to hide part of who they are and they're not allowed to be themselves. And we know from studies that this can have a detrimental effect on mental health. But in some cases, actually, you know, this is the right thing for the child and we have to respect that.

Dr Seonaid Anderson: And I would imagine also there probably more many more children with ticsor tic disorders. We know that tics are a common part of childhood and there might be children who may not receive a diagnosis, but they would still have the tics present would benefit from some kind of support as well. I think it's impossible, not to mention covid this year. And you mentioned that just a few moments ago. Is that something that you're building in to your awareness for teachers? Because you and I both. That can often be quite suggestible and so in anxiety provoking situation tics that sort of come out, it might be the sort of worst option at that time to come out.

So therefore, we're hearing a lot of people with Tourettes syndrome saying that they have to go sniffing and coughing tics, especially at the moment under the current situation as well. Is that something that you're seeking to schools about or try to make teachers aware that these are tics that their Tourettes syndrome students might be showing at the moment?

Lucy Toghill: Yeah, we have we have had teachers get in contact about that. And I think, again, it's about getting to know the child, talking to the family. The covid situation has exacerbated a lot of children's anxieties over the last six months. And we know you don't need the anxiety, fuels Tourettes, and it fuels tics and the suggestibility of covid at the moment, children have got if they have vocal takes, it can be quite common at the moment to shout out I've got coronavirus or to exacerbate those symptoms of that as a tic, you know, and I think it's really important that that is addressed with children and families.

And schools have to be really careful. They have to safeguard themselves. You know, if they're unsure if its a tic or not, they probably would ask that child to be tested to make sure because they would need the evidence to school. But I think, again, talking to parents and the child themselves, you know, I haven't found too many issues with it at the moment.

Dr Seonaid Anderson: I'm really interested in the psycho education that you're offering, and just to bring in some research evidence behind those psycho education initiatives and researchers for the National Hospital for Neurology and Neurosurgery, the University College London and Tourettes syndrome clinic at Great Ordman Street Hospital carried out research examining the usefulness of psycho education for Tourettes syndrome. And they looked at whether psycho education in terms of giving other people, such as teachers or classmates, information about the conditions.

Was it an effective intervention for Tourettes syndrome? And the research consisted of two parts. The first was a review of other studies examining the effects of giving information about Tourettes syndrome, or ADHD, to children and adults, including peers and teachers. And the study found that giving factual information can make other people better informed and also lead them to think, feel and behave in more positive ways towards people with Tourettes syndrome, at least in the in the research study. So just telling people the diagnosis the person has without explaining what it is, doesn't seem to have such a positive effect.

And the second research paper was an evaluation of what we've spoken about earlier, the peer presentations that involve children with Tourettes syndrome recruited through Tourettes Action, and they were using the Tourettes Action primary school presentation. So the researchers asked teachers to give a presentation about Tourettes syndrome to the classmates for children Tourettes syndrome.

And the classmates were given questionnaires before and after the presentation and interviewed in groups. The children Tourettes syndrome their parents and teachers who were also interviewed. And the aim of the interviews, focus groups and questionnaires was to find out what impact the presentation had from these different perspectives. The findings suggested that in general, the presentation increased the classmates knowledge Tourettes syndrome gave them more positive attitudes and behaviors towards the child Tourettes syndrome.

It also appeared to help the children themselves with Tourettes syndrome to feel more accepting of their condition. The more confident and less different and the findings suggest that it is useful to educate other people about Tourettes syndrome, and this will help improve the experiences of those living with the condition.

As I said, that presentation stayed updated. That was from 2013. But we don't have a current evaluation of your presentation given in schools. But hopefully the impact of this new and improved presentation would be even greater than the previous one building on it. What about your own experience as a parent receiving diagnosis? Did you feel supported by school and health care services enough?

Lucy Toghill: Well, you know, I feel very strongly about moving forward towards lessening that gap. And as you know Seonaid, in services, especially to support families. And if schools and other services such as CAMS shared all these resources, it would be great and it would be so much we could do to make more of a positive message that's given the point of diagnosis in offering families that lifeline really and making them aware of services that are available to them, not just with medication, but with behavioural therapies and information on charity such as ours so that we, so they can feel so much more empowered and supported and therefore less alone.

And you talk about my own experience, drawing on my son. Our experience, unfortunately, was waiting a long time to see CAMS. We were refused referral at first and then we were able to get one. And it was very much, we saw a psychiatrist who diagnosed us, and it was unfortunately just a case of, yeah, Tourettes syndrome. Off you go. You know, we were left to the point as What does that mean? What is a syndrome? You know, we didn't have a lot of explanation, not a lot of time to talk about that in the appointment.

And I very quickly had to do my research as a parent as to what that meant for us and what that meant for my son in his life. You know, and it's very important to draw upon the effect of a parent and that grieving process that a parent goes through from receiving that shock of a diagnosis. You know, the parent may say, gosh, is anyone going to love my child like I do? Are they going to be able to get a job, hold down a job? Will they be able to get, you know, drive? And the answer to all these questions is absolutely, yes. What is important is this, you know, the support we put in place and making sure that support is there for that child to make sure they can just carry on and thrive so think can get a point of diagnosis, that needs to be more support for the families so that they don't feel alone and they feel that they are supported by both school and the information they receive from the clinician.

Dr Seonaid Anderson: I mean, we've definitely heard the issues from parents of children with the Tourettes syndrome about diagnosis and treatment. Why is it that is so fraught with difficulties and challenges from the very start of parents noticing tics in their child, and taking their child to the GP? It can be described as a bit of a battle for some. And obviously in some areas around the UK, it's working much more smoothly. But it's interesting looking at the differences between the parents, describing this immense challenge and other families where it's much smoother.

I know that we've talked a little bit about diagnosis. Quite often when a child with tics is taken to the GP, there will be a period of about a year sort of watchful waiting to see if the tics come or go or if they're still there after a year that they might get referred. And we do hear about people bouncing around the system from their GP to a pediatrician, maybe to a neurologist, maybe to CAMS and it seems like in some cases, health care professionals could be more educated about what Tourettes syndrome is and what it isn't. We've heard of some health care professionals saying but your child isn't swearing it can't be Tourettes or maybe their sniffing it's to do with an allergy. But what would you say about this huge challenge and difficulty of getting diagnosis and treatment in some areas?

Lucy Toghill: I think really, Seonaid, it is because the diagnosis pathway varies so much in every NHS trust. And this is what we're hearing from parents and no one trust does it the same, which actually makes my job a lot harder for the help that I can give families and advice, because they're pathway to diagnosis is so different. You know, some I hear from my work that some people get referred to CAMS by the GP straight CAMS and if they're lucky enough to to get on the list and not turn down because their needs aren't high enough, then, you know, the long wait to be seen begins. And some GPS referred a straight to neurologists, which again with the long waiting list can be successful. And then there's some GPS have been known to refer to specialist tics clinics if there is one in the area.

But these, as we know, are far and few between. But some GPS will refer to a local child development centres if it's not straight forward and there are other complications. So once successfully getting on the list and finally being seen, the next wait, if you like, begins. If Tourette syndrome is suspected and a child needs to be seen to be having both motor and vocal tics for at least a year to get that diagnosis. So, you know, we need to let parents know that it's best to keep a log with notes and maybe videos dating back to the first time they started to even noticing the tics so that they have a good evidence base that they can draw on by the time they get to be seen. If there are any suspected co-occurring conditions going on, then, you know, the GP or specialist may refer to another specialist for further investigations.

And that's not forgetting all the other tests that may be put in place by specialists that they will do with the support of school, for example, to decide if other conditions such as dyslexia, dyspraxia or ADHD or autism spectrum disorder is present. So you can see how varied the diagnosis pathway to Tourettes can be. You know, and I have known families takee up to three or four years, possibly more, to even get the diagnosis that feels right for them.

Dr Seonaid Anderson: It's interesting you talking about parents perhaps taking videos. That's something we've heard from clinicians as well and parents that the child may not present with tics at the clinic sometimes, which can be a little bit frustrating, so having some video evidence from home and diaries, as you say, could be really helpful in terms of informing the clinician. We touched on earlier that there are behavioral therapy treatment options as well. Sometimes, maybe in the majority of cases, medication can be offered for where tics are viewed as serious enough for some medication.

But there's also behavioral therapy that can be offered as well in some cases. There are the European guidelines on the treatment and management of Tourettes syndrome, which can be very useful for clinicians to have. And they are the actually state that behavioral therapy should be offered as a frontline treatment for tics. But we do know that there is a lack of trained therapists in the UK. Some patients report not having been given any information at the point of diagnosis about behavioral therapy as a potential treatment. And that's something that hopefully you and others can can help change.

And parents have describe this diagnosis moment as a bit of a cliff where they're not given much information, they're not signposted to support associations or given leaflet information for them to digest afterwards. So that would be something that we would hope to improve upon. And patients report one thing, the behavioural therapy, but they're unable to find the help. So hopefully there'll be more training of clinicians in the UK and hopefully using telemedicine, which we're all getting much more used to now, having meetings and perhaps even clinical consultations over the Internet is the way forward to allowing access to many more people, just thinking about what services are available to the clinicians, also to inform the parents about the point of diagnosis.

I'm sure it must be very much more satisfactory also for the clinician to be able to give the information leaflet to the parents and point out that there's a patients association in that country and guide the family towards extra help as well. I've recently been co-creator of an online directory of support of Tourettes syndrome patient associations around the world. And this can be found on ESSTs website of the European Society for the Study of Tourettes syndrome, which is a great resource.

And there www dot essts dot org slash directory and it gives an overview of the most important services and contact details of the Tourettes syndrome patient associations really around the world, and I think is the most up to date list at the moment. And this allows the professionals to share this information with their patients and open the way to support for them. And this directory has also been forming part of a chapter in the clinical textbook being written at the moment about Tourettes syndrome syndrome.

So by including it as part of a clinical textbook, it means that that point of diagnosis, clinicians can use the chapter to show the patient, maybe able photocopy it, what support associations exist in their country. It feels like what is needed then is a sort of more holistic view of the child and how to support them in a kind of multidisciplinary approach with the schools and the clinics and maybe having a clinical assessment where tics and co-occurring conditions are taken into account, a variety of treatment options might be offered, and a closer relationship between clinics and schools with more awareness of the condition.

Is that something that you think if we're thinking you mentioned the word schools standard earlier, is that some way towards that? And I should also mention that there are no nice guidelines for Tourettes syndrome, but what would you advise me on how to improve the situation at the moment?

Lucy Toghill: Definitely. In some cases, Tourettes syndrome can be very common very suddenly. And we've had a lot of covid. It actually have lots of reports of children, you know, having sudden symptoms. And this can be a massive life change for families and very traumatic, to say the least. You know, so it's really important that when this happens, families have access to clinicians much sooner and to those who are experienced and competent enough to offer advice or signposting to Tourettes regarding schools to get support in place straightaway.

Otherwise, we may be facing a lot more mental health issues. And that's a bit of a worry and possibly school refusal. You know, these children it's not a case of of not wanting to go to school. Sometimes its a case of they literally cannot because of these issues and what school refusal happens, that can be quite a slippery slope.

Dr Seonaid Anderson: And it feels like also, this closer relationship between schools and clinics might be helpful if clinicians can also sort of add to the information and training that you offer to schools, that doesn't seem to be any input from them but they have such such expertise and that it could be also sort of filtered into the information and training as well.

Lucy Toghill: There should be some flow of information between health care professionals and school. Ideally, that would be fantastic. And maybe by feeding this information to schools on behaviour interventions. And that's obviously that's not to say that we would advise teachers take on any behavioral intervention strategies. That certainly has to be delivered by a skilled therapist. But any advice on how to sort of aid that in school would be very useful for teachers, but also not expect teachers to carry out these interventions. But it does seem a bit of a missed opportunity to not feed back on what CAMS wants to see being done in children in school. So it works vice versa, really works both ways, you know.

Dr Seonaid Anderson: I think it's been a really interesting conversation, listening to all the thoughts and advice that you've got. If listeners to this podcast want to find out more information about the online training or Tourettes syndrome awareness, some of the strategies, etc., what would you suggest?

Lucy Toghill: Well, you know, the first sign of contact for any family or school would be Tourettes Action website. I would suggest where they will be offered information on an option of ways contact people. Through our live chat facility or our help desk. So I would definitely recommend they get in touch.

Dr Seonaid Anderson: Great. And the website address for that is www dot Tourettes Action dot org dot uk. They can look ACAMH the web. There's a Tourettes syndrome topic guide and other podcasts there. Lucy,, finally, what would your take home message be.

Lucy Toghill: I think really the important message really here is, is that spreading awareness is the key as well as working together and sharing knowledge. And it goes back to that say the old age saying of knowledge is power. And I think that by working together, we could make a more powerful positive impact and a real difference to so many people's lives.

Dr Seonaid Anderson: Thank you ever so much, Lucy. That was really fascinating. You can follow Lucy on Twitter, the handle @LucyToghill and her email is Lucy@ Tourettes-Action dot org . uk. You can follow me Doctor Seonaid Anderson on Twitter @SeonaidAnderso2 and email me at contact@neurodiverse dot org. If anyone listening wants more information on Tourettes syndrome they can visit the ACAMH website that's ACAMH dot org and you can follow them on social media by searching ACAMH.

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'Education, and Educating, about Tourettes' - Lucy Toghill 'In Conversation Tourettes Syndrome' Ep 2 - ACAMH

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'In Conversation Tourettes Syndrome' continues with Lucy Toghill, education manager of Tourettes Action discussing 'Education, and Educating, about Tourettes'.

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5 minutes

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Executive Skill Building in Teens with Tourette Syndrome

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Tourettes Action is a support and research charity working to improve the lives of people living with Tourette Syndrome. Our services include online live-chat and email support, a befriender network, information, webinars, events and resources.

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Understanding and supporting SEMH pupils

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Understanding and supporting SEMH pupils

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20 minutes