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I am very grateful and thankful for all of the contributing parents and professionals that helped create, inspire, and transform the created tools that will remain available for everyone free of charge on this padlet resource. This project started in 2019 as Puzzling Stories that Make Sense Project with the amazing support and foundational designs by our Co-Founder Maria Carrillo. Without her, this project would not have been possible.

I pray the tools offered through these padlets bring you much support in your times of need.

God bless you all.

Teresa Rodriguz, M.S.

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Teresa Rodriguez, M.S.,   Director of Operations and Founder of Puzzling Stories that Make Sense 

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Teresa Rodriguez, M.S.,   Director of Operations and Founder of Puzzling Stories that Make Sense 

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Master of Science Degree in Counseling Psychology from California Baptist University

Origins of our project started with research/training project with Zero to Three:

Cross-Sector Work in the Prenatal to Age 5 Workforce

https://www.zerotothree.org/resources/2215-findings-and-recommendations-for-cross-sector-work-in-the-prenatal-to-age-5-workforce

My clinical practice/foundation started in part with the research/training with Child Steps: MATCH/UCLA in 2010. This is the article of the findings from their study.
Chorpita, B.F., Daleiden, E.L., Park, A.L., Ward, A. M., Levy, M. C., Cromley, T., Chiu, A. W., Letamendi, A. M., Tsai, H. H., & Krull, J. L. (2017). Child STEPs in California: A randomized effectiveness trial comparing modular treatment with community implemented treatment for youth with anxiety, depression, conduct problems, or traumatic stress. Journal of Consulting and Clinical Psychology, 85, 13-25.

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I want to thank you for the time and dedication you all placed in taking this journey with us on completing this training packet.

"Professionals, Family, and Strangers will have MANY opinions regarding your child's capacity and progress. Look for the individuals that will support your vision for your child. Professionals have the responsibility to give the "worst case scenario" but they can do so while maintaining hope for us; find the professionals that are able to walk the line between realism and hope; these are the fighters you want as part of your team."
Dr. Christine Rivera

As part of your team, I want to invite you all to think about the DREAM that you have for yourself, your child, your family, and remind you to dream big!

Why, because MIRACLES do happen. For me, my child is my miracle and he stands before me: whole, beautiful, full of energy and life. He brought back hope into my life and layered it with a love that knows no barriers.

No matter what may lay ahead, we are ready to move forward in our journey knowing there are answers, support, and we are learning to set appropriate goals that are gradual and at my child's pace. I DARE to DREAM BIG! We will overcome any barriers and function in the best way for him. And, we will do it together!

("Dream Big" phrase by Denzel Washington.)

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We can all use a feelings check-in from time to time. Your emotions are real; they deserve to be given time and space to explore. As we explore different areas of your journey you may have these emotions resurface along with other physiological changes. We want to let you know that this is normal, we are with you, and will help guide you along the way.

Let's begin. Go to page 16 in your workbook.

What is a feelings thermometer?

A feelings thermometer is a visual tool that helps you measure how you are doing emotionally.

We will use the thermometer in your workbook on page 17 as a baseline to check in and rate your feelings. Take a minute to explore this thermometer.

Where do you feel you would rate your current feeling state right now?

We will use this thermometer throughout this training and on our journey to check in with each other.

In the next section, I invite you to modify and personalize your feelings thermometer when you are ready. You do not have to create your own. You can continue using the one provided in your workbook.

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4B. Creating Your Own Feelings Thermometer

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4B. Creating Your Own Feelings Thermometer

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Your feelings thermometer can be modified and include the following elements:

Colors

Numbers

Feeling words

Described behaviors

Emoji faces

What else can you use?

_________________________________

You can find the sample thermometers in your workbook on pages 17-19.

You have been provided with several worksheets to use for the exercises in this column.

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4C. Creating Your Own Feelings Thermometer: Color Scale

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4C. Creating Your Own Feelings Thermometer: Color Scale

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You can use any colors.

Think about how many colors you want to use and get them ready. Identify whether you want the top or the bottom to be your baseline.

How many spaces do you want to fill in for each color?

Remember, there is no wrong way to do this and be creative. Here is an example of combinations of elements for creating your thermometer.

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Feelings Thermometer - sample in digital color

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Let's begin by exploring the amazing parent and individual that you are.

You have many interests, strengths, achievements, goals, and dreams yet to be fulfilled.

Do you remember when you first started dreaming about growing up, your first date, having a family, or even being a parent?

You have worked on many goals, achieved some, and have had to let some go along the way.

The culture that you were raised in has helped contribute to some of those dreams and outcomes.

Which goals have you held onto and which ones have you had to let go?

We are a continual work in progress and have learned from our life experiences.

Let's take a few minutes to explore and reflect on the person that you are right now.

Do you remember the last time you filled out an :All About Me Page?

I think it was elementary school for me.

Let's reflect on all that you are, the strengths, the growth, the needs, the worries, the goals and renewed dreams, and where you see yourself at this very moment.

Open Your Workbook to pages 6
Activity: All About Me.
Do your best to fill in as much as you can in these pages. Remember, there are no right or wrong answers. You do not have to do i all at once.
Take your time.
Your current experience is what is most important right now. You can add words, drawings, or pictures.
Let's begin:
(these are in your workbook)

My Name:

My Age:

My Family:

My Favorite Drink/Foods:

My Interests:

My Strengths:

My Weaknesses:

My Support:

My Career or Chosen Work Status:

My Faith/Beliefs:

My Community:

My Dreams:

My Goals:

My Feelings:

My Needs:

My Fears:

My Hopes:

My ______________________ (add anything you think is important in the extra page provided).

Remember, there are no right or wrong answers. Your current experience is what is most important right now. This is where we begin our journey of exploring our feelings regarding the current place in our lives.

What was it like for you to complete this worksheet?

Moment to Process.

Take a look at the emoji scale at the top of this story, where do you think you would rate yourself right now?

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7A. How Our Sensory Symptoms Affect Behavior

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7A. How Our Sensory Symptoms Affect Behavior

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Parents, you know your child best and are always ready to help your child manage their sensory support needs to address their changing emotional states.
Some of the feelings that our children experience can be very strong and cause equally strong reactions leading to behaviors that can confuse those that are in their environment.
Using feelings thermometers may not work with them and the reactions we get from others in our community, schools, and sometimes even in our home can contribute to our children having heightened states of emotions that could lead to meltdowns due to their sensory overload.
Let's explore this situation a little bit more using the skills we have learned so far with our workbook. Go to page 28 in your workbook.
You have a journal page for your use and you can copy as many pages as you need for your own personal journal on page 29.

In this column, we try to provide you with tools to help understand and introduce the concept of how behaviors can be impacted by our sensory system.

This presentation was written by one of our Consultants, Ivana Ang-Asuncion, M.S., OTR/L

Ivana is an amazing and creative Licensed Occupational Therapist that is also one of our consultants, editor, and translator in Tagalog/English.

I have teamed up with Ivana to help provide you with this brief explanation of how our sensory symptoms affect behavior.

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Maria Carrillo B.F.A., Co-Founder & Graphic Design Manager

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Maria Carrillo B.F.A., Co-Founder & Graphic Design Manager

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@sew_mamii

https://www.etsy.com/shop/SewMamii?ref=seller-platform-mcnav

Maria Carrillo, B.F.A. (Co-Founder of Puzzling Stories that Make Sense) is a partner and integral part of Puzzling Stories that Makes Sense Project. She is the Graphic Design Manager of this project. Maria attended Sanford-Brown College in Henderson, Nevada.  She gained her B.F.A; and Majored in Fashion Design.  As a creative, out of college Maria realized creating her fashion collections was not just a manual labor, but she had to further enhanced her skills in Graphic Design.  She is self-taught in adobe CAD programs.  She believes the world doesn’t communicate in just one way. Therefore, she strives to continue to enhance her creative communication base via digital and offline techniques. Maria created the original logos, designs, and was instrumental in creating the online platforms that gave live access to this foundational project. Maria helped design the binders and packets in digital and pdf formats for the original educational packets for trainings created by Teresa Rodriguez that were later used with different Regional Centers and updated psychoeducational tools within this store.

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AboutKidsHealth. You are not your thoughts. https://youtu.be/0QXmmP4psbA
https://teens.aboutkidshealth.ca/ment...

AlexKaltsMotivation, (2019). Watch this every day and change your life -

Denzel Washington Motivational Speech 2021. https://youtu.be/tbnzAVRZ9Xc

American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Washington, DC: Author.

Ang-Asuncion, Ivana, and Rodriguez, Teresa. (2020). How our sensory systems affect behavior.

Beardslee, W. R., Watson, M. A., Ayoub, C. C., Watts., C. L., & Lester, P. (2010). Zero to Three September, 2010. Building Resilience: The Power to Cope with Adversity., (500-501).

California Department of Developmental Services:
How far we've come.
https://youtu.be/7VyaS9EHFrQ
We're here to speak for justice.
https://youtu.be/epgYYmvqW_I
Self determination program.
https://www.youtube.com/watch?v=E5nsK9je-nA&feature=emb_title
https://www.dds.ca.gov/

Center for Disease Control
https://www.cdc.gov/

Chapman, Gary & Campbell, Ross. (2016). The 5 Love Languages of Children: The Secret to Loving Children Effectively. Northfield Publishing.

Delahooke, Mona, (2017). Social and emotional development in early intervention: A skills guide for working with children.

Donaire-Martinez, Maria, (2019). Core Communication Board.

Donaire-Martinez, Maria, and Rodriguez, Teresa, (2021). Teaching new skills.

MeloDropMedia. (2021). Pixar Short: Float.
https://youtu.be/MnU1hHFsGQc

Moses, Ken Ph.D., (2004). The Impact of Childhood Disability: The Parent’s Struggle. PENT Forum. (1 – 6).                     http://www.pent.ca.gov/beh/dis/parentstruggle_DK.pdf

Muinde, Maria, (2021). How experiencing loss can trigger the different grief states for parents raising children with developmental disorders.

Muinde, Maria, (2021). The impact of culture on our decisions to act on behalf of our children with special needs: A Relational Dilemma

National Academies of Sciences, Engineering, and Medicine (2016). Ensuring Quality and Accessible Care for Children with       Disabilities and Complex Health and Educational Needs: Proceedings of a Workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/23598

Norman-Murch, T., (1996). Reflective supervision as a vehicle for individual and organizational development.  Zero to Three, 17(2),16-20. National Infant and Toddler Child Care Initiative. Relationships: The heart of development and learning.

Penanco. Life is like a cup of coffee. https://youtu.be/ogweL4E24ok

Rodriguez, Teresa. (2021). Let it Rain.

Rodriguez, Teresa, (2019). Living the Dream Facilitator Training.

Rodriguez, Teresa (2019).  Living the Dream Workbook and Grief States from Dr. Ken Moses.

Rodriguez, Teresa. (2016). My son is my super-hero.

Roseberry-McKibbin, Celeste, Ph.D. CCC-SLP, (2018).  Instant Insights on Relationships: Love, Talk, Read to Help Your Child Succeed.

Vitrikas, K., Savard, D., & Merima, B.  Developmental delay: When and how to screen. American Academy of Family Physicians, 2017; 96 (1) :36-43.

Walsh, Froma.  (2016).  Strengthening Family Resilience, Third Edition.

World Health Organization. (1993). The ICD-10 Classification of Mental and Behavioral Health Disorders: Diagnostic Criteria for Research. Geneva, Switzerland: Author.

You Tube Video: Watch this Every Day and Change Your Life: Denzel Washington

ZERO TO THREE. (2014). Cross-sector core competencies for the prenatal to age 5 field. Washington, DC, and Los Angeles, CA: ZERO TO THREE and First 5 LA

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4D. Creating Your Own Feelings Thermometer: Number Scale

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4D. Creating Your Own Feelings Thermometer: Number Scale

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Make a copy of the thermometer worksheet. Think about the numbers 0 to 10.

Identify if you want your baseline at the top or bottom of the thermometer. Number each line of the thermometer from 0 through 10 or 0 to 5.

You have the option to start your baseline at 0 or 10.

Let’s practice and start our thermometer at 0:

Pick a feeling to be the focus of this thermometer.

Example: If you chose Anger, then your baseline would start at 0. Zero would mean that you are not angry at all. As the number rises, this means that you are feeling angrier until you get to number 10, which will be the greatest level of anger you have ever felt.

Take a few minutes to write in some behaviors that happen for each level of anger, or any other chosen feeling, to help you identify what each level looks like. When you have it completed, tape it to a wall to help remind you to check in and explore how intense your feeling may be. Acknowledging our emotions helps us be more aware and take action towards coping and managing the current situation better.

You can create a combination of colors to numbers or numbers to emotion words. You can also choose from other components. Explore, create, and make it your own.

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Clinical Editor: Dr. Rivera, PsyD (Spanish/English)

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Clinical Editor: Dr. Rivera, PsyD (Spanish/English)

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Private Practice for Mental Health Therapy Services

https://www.drchristine.org/

United States, California

Dr. Rivera has been an amazing support and clinical guide for this program that contributed to many tools, this training, and leading presentations created by this program for other graduate programs. We are so thankful for her support, wisdom, guidance, and collaboration in this project.

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I leave you with this amazing video that has helped lift me up when I fall, get exhausted, feel hopeless, and need to pick myself up again.

"DREAM BIG!"

You Tube Video: Watch this Every Day and Change Your Life: Denzel Washington

https://youtu.be/tbnzAVRZ9Xc

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WATCH THIS EVERYDAY AND CHANGE YOUR LIFE - Denzel Washington Motivational Speech

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According to Dr. Froma Walsh, resilience is the ability to withstand and rebound from disruptive life challenges. Resilience involves key processes over time that foster the ability to “struggle well,” and surmount obstacles, and go on to live and love fully.

A Family Resilience framework offers several advantages.

By definition, it focuses on strengths under stress, in the midst of crisis, and in overcoming adversity.

Second, it is assumed that no single model fits all families or their situations. Functioning is assessed in context (i.e., relative to each family’s values, structures, resources, and life challenges).

Third, the processes for optimal functioning and the well-being of members are seen to vary over time, as challenges unfold and families evolve across the life cycle.

A family resilience perspective is grounded in a deep conviction in the potential for family recovery and growth out of adversity.

Resource from the research article Family Resilience: A Framework for Clinical Practice by Froma Walsh, Ph.D.  Family Practice, Vol 42, No 1., 2003 @FPI Inc.

Take some time to sit and explore these family resilience framework factors.
Use the worksheet on pages 41-42 to take note of your own family's resilience framework while targeting the following questions.

Remember, these are just your current thoughts and there are no right or wrong answers.

This exercise is meant to help you begin to explore these areas for further development towards the ongoing growth of family resilience.

What are your family strengths under stress?

What are some of your key family values?

What are some key structures in your family culture that you maintain?

What resources are readily available to your family?

What are some current or ongoing life challenges?

What are some expected life transitions in the family?

Get your cup of coffee, tea, or hot chocolate ready and let's begin.

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9A. Screening for Developmental Disorders and Delays 

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9A. Screening for Developmental Disorders and Delays 

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Children reach their core functional emotional developmental levels (FEDLs) at different times, at their own pace, when they are ready and not when they turn a specific age. Reaching these milestones highly depends on each "child's unique rate of maturation." The first five years of life are identified to be the years to reach specific developmental milestones but "many individuals with developmental differences reach them later, and its possible to reach them across their lifespan" (Delahooke, Mona, (2018) pg. 74).

When a parent or caregiver identify there is a need to seek an evaluation or screen for possible developmental delays or support needs, they are faced with other challenges that are out of their control. These challenges can be: difficulty getting the right referrals, a long wait period for an evaluation, the costs may not be covered by insurance, or the times of assessments do not meet the availability of the family due to work and school routines. According to a study conducted by Vitrikas, K., Savard, D., & Merima, B. (2017), providers report being faced with "multiple challenges in screening for developmental delays within routine clinical visits."

This is far too common and many of the barriers include the following:

not enough resources or tools to appropriately assess for developmental delays

not enough training or understanding of screening tools

not enough time provided in sessions to address the needs

dismissing needs to other professional entities like the Regional Center or the local school district

competing clinical demands

long waits for services or appointments

not knowing who to refer the family to for support; and high staff turnaround

It almost feels like the parent needs to know all of these things coming to ensure they are provided with the right services and support.

This is why it is imperative to establish, build, and maintain healthy and strong relationships with your providers. Relationships matter, especially in situations where parents are experiencing stress over their child struggling with their developmental growth. Parents and caregivers will experience a wide range of emotions and the experiences they have with providers will greatly impact how they reach out to and request support services. Mona Delahooke, Ph.D., (2017) emphasizes the important role of the providers (in all areas of support) with families, and the impact they make when taking the time to understand the nature of parents' emotional experiences. Delahooke (2017) reports providers can better support the parents when they address the stress experienced by the parents when suspecting a diagnosis or problems connected with atypical development arises (page 6).

I created a resource page to help you explore referrals and columns that are specific to the most commonly used therapy services for children with developmental support needs. The majority of the resources that I targeted have a presence on Instagram to help you further reach out and view their resources on their Instagram accounts.

Follow the link for this free resource:

https://padlet.com/terepuzzlingstories/iwpqw088ya98ko60

Delahooke, Mona, (2017). Social and emotional development in early intervention: A skills guide for working with children.

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According to the Center for Disease Control and Prevention, developmental disorders are the following: "a group of conditions due to an impairment in physical, learning, language, or behavior areas."

Developmental Disorder Vs. Delay

Have you heard of some children being diagnosed with a developmental delay as opposed to a developmental disorder?

What is the difference?

Developmental Disorders

Developmental disorders are neurological disorders. These disorders usually appear during childhood and persist for the rest of your child’s life. These disorders are diagnosed by a Medical Professional like a Pediatric Psychologist, Pediatric Neurologist, and/or a Developmental-Behavioral Pediatrician.
There is hope, as with early and intensive intervention, children can often overcome some aspects of their disorder but the core challenges remain throughout adulthood.

Examples of developmental disorders include Autism, Down Syndrome, Hearing Loss, ADHD, Fragile X Syndrome, learning disabilities, intellectual disabilities, and Cerebral Palsy.

Children with developmental disorders often have one or more developmental delays.

Developmental delay

When your child has a developmental delay, it means they didn’t reach one or more of their developmental milestones within the typical age range. With early intervention, most children with a developmental delay overcome their challenges and perform at the same level as their peers.

All children are different and develop at their own pace. As a parent you know your child best. When you have a feeling that something may not seem right, you should know where to go to seek advice and support. The Center for Disease Control has created a general milestone tracker by age to serve as a resource for parents and professionals. The link is attached for your convenience.
https://www.cdc.gov/ncbddd/actearly/milestones/index.html

Every state has resources and support to help families get their child early intervention support services.
So, where can you go to get screened/assessed for possible developmental delays?

Local Regional Center

Primary Doctor referral to a Developmental-Behavioral Pediatrician

Local School District Special Education Department and Early Head Start

A worksheet is provided in your workbook on page 33-34 to log in the contact numbers of your local agencies.
Facts from CDC:  "Developmental disorders occur among all racial, ethnic, and socioeconomic groups. Recent estimates in the United States show that about one in six, or about 17%, of children aged 3 through 17 years have one or more developmental disorders.
Some health conditions, such as asthma, gastrointestinal symptoms, eczema/skin allergies, and migraine headaches, have been found to be more common among children with developmental disorders."

Getting assessed early, at the first signs of possible delay is key to ensuring your child gets the appropriate support to help them reach their milestones and reduce future risk factors that could further impact their level of functioning."

Remember, your child will meet their milestones on their own time and you do not need to feel pressured, guilty, or stressed if they do not fit the milestone trackers provided by the CDC, doctor, or school.

These are guides of what is identified as typical for children of specific ages and they can be beneficial in identifying steps to guide you in your IEP or treatment planning. You know your child best and will be there to celebrate every victory with every step no matter how big or small. You've got this!

So, getting the diagnosis is key to ensuring you have access to the right referrals and support services for early intervention.
Some of the usual referrals provided and part of a multidisciplinary assessment consist of the following professionals:

Speech and Language Pathologist/AAC Specialist

Occupational Therapist

Developmental-Behavioral Pediatrician

Neurologist

Pediatric Psychologist

Adapted Physical Therapist

Physical Therapist

Feeding Specialist (This can be within the scope of the Speech therapist or Occupational therapist but they focus on different areas of feeding)

Nutritionist

Other referrals that help provide support and rule out other issues that may be contributing to co-occurring disorders are the following professionals:

Applied Behavioral Analysis Therapist

Gastroenterologist

Urologist

Dermatologist

Allergist

Sensory Integration Specialist (this can fall under the OT specialty)

Mental Health Therapist and Family Therapist

Psychologist

Respite Services

I hope these lists have helped you understand the different professions that are available to your child/family. You always have the right to request a referral. If you are denied a referral, request that your doctor put it in their note that you requested the referral with the reason for denial. This will allow you to request services elsewhere and even file a grievance if necessary.

This is not an exhaustive list and to tell you the truth, this is our list of current providers. It's enough to make you want to run for the hills. This is also why I feel that I have learned so much as we started with our intervention support early at 18 months of age with the support from the Regional Center. Depending on your child's specific diagnosed disorder or delay, this will determine the areas of discipline that you will need to explore and your Regional Center Case Manager should be able to help identify appropriate linkage needs.
There is always a case manager for each agency and with your medical provider so you should not have to manage them all.
If you ever feel overwhelmed, you can always reach out to your case manager at the Regional Center for support. We will be exploring support systems in later sections to help you in this area too.

Please visit the CDC website for a wealth of information in each of the developmental delays listed above along with other supportive links:

https://www.cdc.gov/

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Centers for Disease Control and Prevention

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CDC is the nation's leading science-based, data-driven, service organization that protects the public's health. For more than 70 years, we've put science into action to help children stay healthy so they can grow and learn; to help families, businesses, and communities fight disease and stay strong; and to protect the public's health.

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"Parents, all parents, attach to their child through their dreams, fantasies, illusions, and projections of the future. Something basic to our sense of being is stirred when we witness the miracle of the continuity of life." Dr. Ken Moses, Ph.D.

No matter what your family dynamics may have been, no matter where you live, no matter what the ethnicity or culture, and the choices in life that have brought you to this point, you will experience a change of mixed emotions when  you are anticipating the beginning of a new life and addition to your family.

Not everyone will find themselves on the same path towards their dream of having children.
Some parents will experience more roadblocks than others.
Some parents will not be able to conceive a child naturally due to medical problems connected to infertility.
Some parents may also have experienced the loss of a child during their last trimester, at childbirth, or maybe shortly after their birth due to medical complications and developmental problems.
You never know what a set of parents may have gone through, the pain and loss they have experienced, and the emotional struggles they have overcome to get to this point. The place where they finally get to hold their own child, whether it is through natural conception or adoption. The dream of having a child is finally fulfilled.

There are so many feelings experienced after you hold your child for the first time. There are feelings of anticipation, excitement, love, anxiety, pain, and joy amongst many other feelings. You can visualize the dream of what it is going to be like raising your child, being a parent, and being a complete family. Your dream has been realized at that very moment.

Activity: The Dream of Your Child
This activity is on page 22 of your workbook.
Imagine for a minute, what came to your mind as you began to have dreams of what it would be like to be a parent.
It may have manifested itself by seeing yourself sitting in your baby's nursery, looking at the heirlooms you purchased, imagining the things you would teach them, the songs you would sing to them, or the games you would play.
All wonderful dreams of the future you envision with your child joining your family. This may be difficult to recall and bring about some difficult emotions.
This is normal and its OK to stop, take a minute to breathe, and reflect on what you need right now.

You are not alone in this. Let's explore this memory together and use the worksheet of the cloud to create/express this original dream.

You can use words, drawings, pictures, or symbols to express that dream.

Remember, there are no wrong answers. Take a moment to reflect on your completed work.

What was it like for you to revisit this special memory?

What expectations, hopes, or dreams came to mind?

How do you feel right now?

Let's do a feelings check-in with our thermometer, take a stretch break, brew a cup of coffee or tea, and take a moment to reflect on your journey. You have come a long way and you are stronger today because you made it this far.
Our past experiences help us feel more grateful for the life that we have and those we get to share it with in hopes for a better future for our child/children.

Your emotions are valid, need a space to be experienced and shared, and  I have created this journal specifically for you, for your child, and for any loss you may have experienced. You are not alone.

I am including added worksheets in your workbook (pages 23-27) from my collection of the "Anatomy of the Rose" Journal and Workbook to help you explore your thoughts and feelings further.

In the next column we will focus a little more on self-regulation and sensory support .

Moses, Ken Ph.D., 2004. The Impact of Childhood Disability: The Parent’s Struggle. PENT Forum. (1 – 6).
http://www.pent.ca.gov/beh/dis/parentstruggle_DK.pdf

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As your baby starts to grow, some dreams envisioned become reality. You celebrate their first birthday and you introduce them to their world. You are ever so watchful of them and try to teach them new things.
But then, you start to notice some things don't seem quite right. Some parents may notice their child may be overly sensitive to some things, or they may notice they are not reacting at all. Parents may also notice that their child may  not be keeping up with the overall growth and development of the other kids around them that make them start to ask questions.

Could there be something wrong?

Go to Page 30 in your workbook.
Activity: Behavior Changes in my Child

What were some behaviors that alerted you that things may be different with your child?
1.
2.
3.
4.
Once you finally have the courage to make the appointment with your child's primary doctor, they may refer you to a developmental pediatrician for a formal assessment to rule out any possible developmental needs/support.

Sometimes, your doctor may even dismiss your concerns that could leave you feeling lost, confused, discouraged, anxious, or even depressed. They may say things like, "Oh, some children are late bloomers, just give them some time."
Hopefully, your pediatrician is able to listen to your concerns and act on them by making the necessary referral.
What comes next is the long wait to get an assessment. Due to the days we are living in with Covid-19, we are experiencing more struggles in getting timely assessments for our children.
Request support from your Regional Center Case Manager to help in advocating for your right to a timely assessment to ensure your child's medical and developmental needs are being addressed.

When you finally get the appointment, you begin to feel curious, worried, anxious, and just desperate to know:
Is there something wrong with my child?
Can we fix it?
Will he/she be OK?
Could I have done something different to prevent this?
Why me?
Why him/her?

Go to page 31 in your workbook. You can use this activity to help you explore these thoughts and questions connected with "opening that door" of the possibility of your child being diagnosed with a developmental disorder or delay.

Getting the diagnosis of a developmental disorder for your child, for your baby, could be one of the most difficult experiences you will encounter as a parent.
You begin to wonder so many things. You ask yourself a million questions. You even go numb at the very word or acknowledgment that this is what is going on for your child.
They have a disorder?
How?
When?
What caused it?
What did I do?
What could I have done better? How do I move on from here? Where do I go for help?
Who can I talk to?

Do any of these sound familiar to you?

The work of Dr. Ken Moses, Ph.D. has helped us understand how parents experience and process the reaction of hearing that their child has a diagnosis of a developmental disorder.

Dr. Moses found that parents raising children with a developmental disorder "grieve for the loss of the dream.” They grieve the original dream they have of what their relationship would be like, what their child would be like, the family image, and so much more.

Dr. Moses found it imperative for a parent to be able to “experience the process of grieving” to move on with their lives.
This begins with letting go of the dream, the attachment we have with that dream, and come to acknowledge that we have a child to love.

This can be very difficult for some parents. I know it was for me, and at times there are moments that I revisit that original dream based on current situations that occur.

Letting go of the original dream can become its own obstacle in moving forward.

Let’s take some time to stop.

Let's reflect on the moment your child was finally born and all the feelings that came with their birth.

The excitement, motivation, anxiety, and just overall amazement of the life before you waiting to be loved by you and your family.

After some time has passed, you start to notice the need for an evaluation, you are able to get your assessment, and now your questions have been answered about your child's medical condition leading to the confirmation of a diagnosed developmental disorder.

Nothing has changed. They are still the amazing and loved child.

Because of your hard work and persistence for support, your child now has a diagnosis that will be able to support the needs your child has that requires a diagnosis.

You had the courage to open the door.

You made it happen.

You worked hard and worked past any barriers that were before you to ensure that your child would get support.

You are a parent that is worth acknowledgment, praise, support, and love.

You are not alone.

You can reach out to support groups with the Regional Center, social media, 211, NAMI, and your local hospitals.

Moses, Ken Ph.D., 2004. The Impact of Childhood Disability: The Parent’s Struggle. PENT Forum. (1 – 6).   http://www.pent.ca.gov/beh/dis/parentstruggle_DK.pdf

What was this experience like for you?

Use your thermometer to check in and check in with your journal as needed.

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10A. Grieving States by Dr. Ken Moses: Our Unique Journey

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10A. Grieving States by Dr. Ken Moses: Our Unique Journey

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There is so much to be said about the process of grief.

We all experience grief at one point for various reasons.

We may grieve changes in our lives, the loss of relationships, the loss and passing of those we love (pregnancy loss and/or traditional loss). Additionally, as parents to a child diagnosed with a developmental disorder we grieve other aspects of life such as missed developmental milestones, a life that looks different from what we imagined.

The loss of a life imagined is physical, emotional, and spiritual. Your whole body and being is involved.
What do you say to someone who experiences this type of loss?
How do we cope with such loss?

Dr. Ken Moses has a wealth of information on the states of grief in regards to having a child that has been diagnosed with a developmental disorder. His process has helped me understand my own emotional, physical, and spiritual needs.
Article: “The Impact of Childhood Disability: A Parent’s Struggle” (Link was removed as it is no longer active).

I deeply appreciate how he starts with how we, as parents, need to identify with what our dreams were as a parent, with what it was going to be like to have a child, and how that dream is impacted when we find out that our child has a disability.
As a mother, you may feel something very strong. It penetrates the very core of our being: who you are as a woman, wife, and mother.
For fathers, it may be equally impactful and depending on your culture of origin, experience an immediate sense of loss connected with the expectation a father may have with passing down a lineage and family name with a son.

Accepting the loss of the life you dreamed of having is only the beginning. There are times that you may feel angry, anxious, depressed, scared, lost and alone. Sometimes, you feel many of them at once.

You are ok. It is ok to feel this way. I would be surprised if you did not go through some of these emotions, if not all of them at one point in your life. You and your spouse/partner will oftentimes experience them in different ways.

In a relationship, it is hard to see the process or understand each other's emotional needs without communication. It is important to talk about it, acknowledge the need to talk, have space, and just have a safe place to be angry, shout out, or just cry.

We all need this at times and need our partner to be there to help pick up the pieces so that we are there for our children and/or ourselves.

Sometimes, children with developmental disorders experience moments, or periods of deep illness, and this can contribute to what some identify as developmental regression. It feels as if they go back a few years and lose all the growth that we've worked hard to develop.

Friends, it's ok to feel states of grief at different times of your life. Know there are things that will trigger these emotions outside of your own child's day to day events and needs.

You need a place to express your grief in a healthy and supportive way. I am so grateful to have found a network of support with other parents, families, and providers that are on similar journeys and just get what I am going through.

I found a village of support on Instagram alongside the amazing supportive family members and friends we have met on our journey. They allow us a safe place to grieve, grow, and express ourselves without judgment.

We all have different stories to share and by sharing them we grow, grieve, support each other, and allow healing. Continue to release the pain and allow yourself to heal while you grow strong in spirit with your special child. They need you to be present for them.

As you work on your healing journey alongside your amazing child, there may be some other triggers that affect your emotional stability that stems from unresolved childhood trauma. Some of these reactions may stem from generational emotional reactivity. Connecting with a mental health therapist can help you on your journey and explore these emotional reactions further. Taking care of your own mental health and discovering your own unique needs towards healing is the first step towards growing stronger.

Let's keep growing together.

Here is some information about Dr. Ken Moses and main areas from his article,  “The Impact of Childhood Disability: A Parent’s Struggle.”

Dr. Moses: Psychologist, Renowned Speaker, Author, Clinician.

Major Focus: Working with parents raising children with disabilities and disabled adults.

Personal Experience: Experienced deaths in the family; family members with life threatening illnesses, disabilities, and other traumas with his family and self.

Private Practice: Directs Resource Networks Inc. producing workshops, seminars, consultation and materials that deal with issues of human growth in the shadow of loss.

Dr. Moses identifies the grieving “states” and not stages to exemplify how different the grieving process is for families who are raising children diagnosed with a disability.

It is important to understand there is no specific state that should be achieved or mastered, no step-by-step process, and no stages that lead to acceptance.

The states of grieving presented by Dr. Moses do not have any strict order but he did identify “a loose pattern.”  States of Grieving: Denial, Anxiety, Fear, Guilt, Depression, and Anger.

Your workbook has 2 tables on pages 35-36 to help you explore your feeling states and gives you an opportunity to explore these feeling states with a family member. I hope this helps you start the conversation with them and build stronger bonds in the healing process for you both.

For more great works by Dr. Ken Moses, follow this link:
http://worldcat.org/identities/np-moses,%20ken/

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Take the time to explore each state, read each description, and see how each state relates to your own unique experience.

DENIAL:

Identified as that first initial feeling after the diagnosis.

With each loss or regression, newly added diagnosis, or setback, it seems to emerge again and again.

This is OK, normal, and we will feel this state of denial as often as we need to experience it as parents.

Blunts the initial impact to discover our inner strength needed to take the next steps

ANXIETY:

Following denial or other feeling states.

Fuels the energy needed to take steps towards necessary life changes and adjusting to your new culture embracing your child’s needs.

I can’t tell you how many times the feeling of anxiety about the advice, or lack of advice or guidance from a doctor or other professional, was what fueled me to take charge of my child’s case management needs and seek for that 2nd, 3rd, and sometimes even 4th opinion to ensure things were being handled correctly.

FEAR

Fear sets in as we go through changes that can lead to feelings of terror, an overwhelming sense of abandonment and vulnerability (fear of having more children after their impaired child, overprotecting them, and not letting your child do things that are risky, etc.).

When we feel fear, this creates a response in our brain and body that acts like a warning and sets off an alarm. Not every parent will respond the same way to this feeling of fear and may even trigger old situations and make it difficult to manage this emotion.

This can cause internal conflict within the family union and if unaddressed, can lead to more serious problems within the couple, and the fear attacks the very essence of the dream of a family to grow.

Fear is the medium that encourages the struggle to reattach and to love again in the face of loss.

This is where I feel that many of us begin to take the steps of acknowledgment and understanding that we have to make changes, get answers, and advocate for the support we need for our children.

Fear can lead to positive change. We get a surge of energy we did not know existed and we can use this fear as fuel to act on behalf of the needs of our children.

GUILT

The culture and community in which we reside will contribute to how guilt will be received and the next steps taken.

Guilt can be very difficult to talk about.

Did you grow up in a family that encouraged open expression of feelings, shame,  identified feelings of sadness or sorrow, supported when needed, or criticized?

Guilty feelings can be the result of criticism or the fear of being judged.

“Ways of experiencing guilt: telling a story of being responsible of the handicap; conviction that the impairment is punished for a past inappropriate thought, feeling, or action; regretting the pregnancy during gestation “it’s all my fault,” and lastly; thinking they are bad parents due to having an impaired child “bad things happen to bad people.” Dr. Ken Moses

DEPRESSION

Symptoms of depression are many times overlooked or dismissed as other physical problems.

Depression can look different due to inabilities of accessing needed supports, dismissing your feelings due to the stressors of having several children with different disabilities and needs, and the parent just learned to go with the motions.

This can look like numbness, difficulty focusing and completing tasks, a complete inability to feel or cry anymore, and at worst it has led to suicidal thoughts/ideations or suicide.

When we see these signs, as an outsider looking in, we need to be aware and willing to step in to offer support, companionship, and help acknowledging the pain a parent or caregiver is experiencing while looking for hope in being present for their children through the services we provide.

When parents can step away from depression, this can be the medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable, and a strong parent, even though they have a child with impairments they cannot cure.

We can identify with a new dream around the reality of the amazing child in front of us.

Feeling depressed is a normal and natural part of grieving the loss of the dream we had of our “normal” child.

Anger

Anger is also a natural feeling to experience.

Anger is sometimes misdirected towards loved ones, or even the professionals you are depending on for support.

It can be very difficult to feel that you can trust others with your thoughts and feelings.

Dr. Moses identifies the difficulty trusting others due to feeling an internal sense of justice being violated.

If we do not take care of our responses and act out our anger, we can hurt the needed relationships and bonds that will support the growth and healing of our wounds from this news, and further lead to difficulty connecting with resources as we are not willing to accept them.

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Camila, Psychologist, Consultant, Writer, Digital Presentations Creator, Editor for Spanish 

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Camila, Psychologist, Consultant, Writer, Digital Presentations Creator, Editor for Spanish 

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You Tube

https://www.youtube.com/channel/UC4YJFhF5oGHjvEIwvKtT9aw

Argentina

Dr. Porrá has helped create multiple therapeutic tools for this project and supported the editing and translation of the Living the Dream Series in Spanish with the original packets created in 2019.  Dr. Porrá also created the wonderful video presentations of our packets. Dr.  Porrá  has been a great support and addition to this project by enhancing and creating original works that were integrated into this series. Thank you for your motivation and support in keeping this project going.

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Professor

Recipient, ASHA's Honors of the Association

Amazon bestselling author Love Talk Read to Help Your Child Succeed

ASHA Board Certified Language Specialist

https://lovetalkread.com/

United States, California

Dr. Roseberry-McKibbin has donated over 200 pamphlets/books in English and Spanish to help support this project and the families we serve. She is a continued support and provides guidance with different projects while collaborating with us to provide Lectures to her graduate students to help them understand the emotional changes that parents experience when their child is diagnosed with a disability. Dr. Roseberry-McKibbin is a mentor and an inspiration to us all.

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Ivana, Licensed Occupational Therapist, Consultant (English/Tagalog), Editor, Translator in Tagalog 

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Ivana, Licensed Occupational Therapist, Consultant (English/Tagalog), Editor, Translator in Tagalog 

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United States

Ivana has helped with multiple translations in Tagalog with resources available on our Teachers pay Teachers store and helped me create a power point presentation to educate families about their child's sensory support needs. We are so grateful to have Ivana's expertise to further enhance this project and trainings.

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https://www.karenrostoker-gruber.com/

Unites States

Karen has been an amazing supporter and collaborator with her discounted books of the "Rooster Can't Cock-A-Doodle Doo" and allowing us to create book companions to publish for free on our TpT store to help families and schools expand their curriculum targeting special needs and AAC boards. Karen has given us permission to publish a Spanish translation to her book and has also donated a Braille copy of her book for our families to use. We are very thankful for your support and collaboration with our projects.

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Luisana, B.S., Consultant (English/Spanish), Regional Center Case Manager

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Luisana, B.S., Consultant (English/Spanish), Regional Center Case Manager

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United States

Luisana is one of our parent contributors with her personal story. We are very grateful for your trust, support, and expertise that helped support the families we served.

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Maria,  Parent Mentor, Consultant (English/Swahili), Translator, Contributing Writer 

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Maria,  Parent Mentor, Consultant (English/Swahili), Translator, Contributing Writer 

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Facebook Account:

https://www.facebook.com/lovepersonified.autismmum.ke/

Kenya

Maria is one of our parent contributors by having shared her own personal story. Maria has also written several reflection pieces for our parent training. Her gift to tell a story and bring us into her world comes alive in every piece she writes. We are so lucky to have Maria share her life experience to help us explore our culture, thoughts, experience with grief, and teach us about resilience with hope and strength.

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We are the Mohammed’s we live in the UK. We have been happily married since 2015. We only have the one baby and that is our little darling, Brogan, born in 2016. This was the best but scariest day of my life. Brogan is a giant beam of light into our family, and I’m so honored to be his mummy. He’s our biggest joy. I’ll do anything and everything for my son.  I was 13weeks pregnant when we found out I was a higher risk for having a baby with Down ’s syndrome. I was 21 years old, that test can’t be right! That evening, we went to the hospital to speak with a consultant about our “option”. I knew I wanted this baby and it didn’t change the way I felt. But I just needed to know for sure. I wanted to know as much as possible about my son’s diagnosis. I can’t lie, lots of things past through my mind at first with those words of his diagnosis. “Down’s syndrome.” It was like a flash bulb memory. I chose to have the Harmony test done. At the time, it wasn’t part of the NHS but it had no risks to our baby and its 99.9% accurate. One week later, we got the phone call we had all been waiting for. My baby boy would be born with Down syndrome. From that moment on, I wised up, and absorbed everything possible in the next 8 months. As a mother, I’ve learned the true meaning of unconditional love.

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I still can't find words to describe how surreal the moment of being a mother was for me. Me, being able to take my Son home was an answered prayer from God. Little Man spent the first 12 hours of his life in an incubator on oxygen support. In the process of making his grand entry into this world through a natural birth, the midwife discovered that he wasn't getting a sufficient flow oxygen due to being strangled by his umbilical cord. The thought of going home without a child after enduring 40 weeks of pregnancy and the excruciating pain of childbirth shook me to my core. I remember praying beside his incubator asking God to spare my child's life. I made a promise to accept him in whichever form he'll come out of it. I didn't fully understand then the magnitude of the promise I had just made. He achieved all his growth milestones. Some earlier than most. Then the speech delay kicked in. The fact that he lost his little speech at barely 2 years didn't make it any easier for me. A man is only as good as his word. I made a promise to God. To spare my child in exchange of acceptance. Here's to preaching the gospel of autism acceptance and living by my word.

I have always been fascinated by autism. I've had a thing for it long before my sonshine was born. I found myself reading and watching programs about it. "Touch" was the first series I got addicted to. I watched it on replay. It was beautiful and sad in equal measure. I felt sorry for Jake's Dad because I can't imagine spending a day without cuddling my child. There's something about how he went above and beyond to understand his child's mode of communication using numbers and objects. It still beats me to date how a kid who can actually talk chooses to remain silent. Turns out, God was slowly preparing me for the journey ahead as a mother to an autistic child. I was able to pick up on his autistic stereotypes based on part of my training on children's learning disabilities and the interest I had in autism. The journey from diagnosis, to seeking second opinion, occupational therapy, sensory integration and finding a suitable school for him hasn't been easy.  Through it all, we'll love him until all the pieces of his puzzle fit. Being a parent to a special needs child requires you to grow a thick skin. You'll get stared at when your child has a meltdown in public. People will howl insensitive comments at you, mostly out of ignorance.  However, how you treat your child determines how the society will treat them in return. Don't exclude them from the world. Resist the urge of stopping them from exploring the environment around them. Let your kids be kids.  Invest in your child's sensory play toys. You'll be amused by how much they increase their level of concentration and coordination.

In this house we do AUTISM.  We do meltdowns and avoidance.

We do tears and frustration. We worry and stress.  We also hope for a better day. We preserve and we pray because in this house, we don’t go down without a fight!

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7B. Visuals to Support Sensory Regulation Needs

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7B. Visuals to Support Sensory Regulation Needs

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I am sharing a tool I created for my own child to help with practicing his sensory support skills. Visuals can help you and your treatment team understand, plan, and practice the needed sensory regulation skills.

My son is a sensory seeker and we rely on heavy work to support his needs. I created a First and Then Chart with up to 3 different activity options to have as a visual schedule.

We always start with a heavy work option and then a main activity like eating. The 2nd row would also start with heavy work or a desk related regulation activity if he was already at his desk ready to work. The last option is usually a lighter sensory task unless he requests or is showing signs of needing more heavy work like pushing up against us or furniture to self-regulate.
If you would like some help creating your own visuals for a sensory schedule, send me an email (address below) and list up to 8 different activities your child likes so that I can help you create your own set of visuals.

Email me at: terepuzzlingstories@gmail.com

You will find that planning ahead of work activities will help everyone stay calm and more regulated than waiting until after they are reacting to a trigger; consequently, spending longer times calming/soothing your child.

You can also reach out to Ivana for your own consult and support:
@ot.amigos on Instagram (Know that her rates and support are provided as an Independent Consultant)

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Yoga to Transform the Mind and Body with Patty Lee, LMFT

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Yoga to Transform the Mind and Body with Patty Lee, LMFT

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Registered Yoga Teacher (RYT) with Yoga Alliance  RYT 200
Licensed Marriage and Family Therapist (LMFT)
Patty Lee

Instagram: @KindredSpirit.yoga

Tune in for yoga inspiration, reflections, parenting and child development information.

Message from Patty:
Being a mom has been the greatest joy in my life.  I feel yoga has helped me to truly be present and embrace the entire journey—ups and downs of it all.. that is what motherhood is all about am I right?
My best mornings begin with me and breath work on my yoga mat.  If I am lucky, I’ll hear my little one’s footsteps as she runs across the hall over to my room after waking up. I love how she joins me on my mat and hugs me good morning.  Here she is able to see my dedication and share in this bright energy I embrace at the start of my day

Yoga brings me peace, mindfulness and allows me to be the best mom I can be for my daughter. During the times when I am frustrated or having challenges, I am more easily able to recenter myself, calm down and be the parent my daughter needs me to be.  As my daughter watches me practice my breath work and meditations, I have noticed she is able to be more mindful, observant and most of all, take deep breaths to stay regulated during times when she is sad, mad or doesn’t get her way

If we want our kiddos to be more aware, slow down and be mindful of their own emotions, we must FIRST lead by example.  Taking the time to schedule in YOU time and space to breath and reflect. It is only in this time, where you may access your true self.  Let go of all the worries and judgements. Make time to just BE.  Yoga has helped me to connect to my mind, body and spirit, helping me to grow and embrace every aspect of myself.

Interested to try yoga for the first time or want to refine your practice? I welcome you to join my LIVE virtual yoga classes! In my classes, you will discover a space to slow down and reflect. Truly connecting to your breath and body, I will guide you through breath work, asana practice and meditation to settle your mind, boost your energy and optimize your day

Please visit my website for more details and to view weekly class schedule:
https://www.kindredspirit.yoga/

Email: kindredspirit.yogaclass@gmail.com

Instagram handle @kindredspirit.yoga

I am looking forward to meeting you

🤍 Namaste

Patty

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Private Sessions

Through individualized one-on-one sessions with me, you can enjoy your very own yoga practice specifically customized to your goals, needs and desires. Honoring your body and the self care you deserve, you will have the opportunity to learn more about breath work, meditations, and refining techniques and skills. This time is all about YOU. Click Pricing and Schedule for details.

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Kindred Spirit Yoga | Invigoration of Mind and Soul through Yoga

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Through individualized one-on-one sessions with me, you can enjoy your very own yoga practice specifically customized to your goals, needs and desires. Honoring your body and the self care you deserve, you will have the opportunity to learn more about breath work, meditations, and refining techniques and skills.

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8B. Activity: Our Thoughts Around Getting a Diagnosis

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8B. Activity: Our Thoughts Around Getting a Diagnosis

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Go to page 32 in your workbook.
Take a few minutes to fill in the thought bubbles for this worksheet.

1. How did your dream change?

2. What thoughts came to your mind about you?

3. What thought came to your mind about your child?

4. What thoughts came to your mind about your family image?

Remember, there is no wrong answer and this packet is mainly to help you reflect and explore.

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I thought you guys would enjoy this. This is me attempting to lift up my son doing leg lifts and stretches and he plowed into me asking me to lift him. We try to count as we do this together. I laughed so hard and had so much fun. I love the support, attention, guidance, energy, and motivation from Patty. I hope you guys consider joining either a private class, group class, or the Mommy and Me class. It starts one day at a time and don't forget to have fun with this. When we include our children in our self care activities they learn to regulate and cope with life stressors that will contribute to increased success in managing hardships while building family resilience. See you guys soon and let's do this friends.

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10C. Reflections on Acceptance vs. Acknowledgment

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10C. Reflections on Acceptance vs. Acknowledgment

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Let's reflect a little on what Dr. Moses identified as the difference between acknowledgment and acceptance in his article when using theories of grieving:  “The Impact of Childhood Disability: A Parent’s Struggle" (PENT Forum 2004).
(Disclaimer: The original article by Dr. Moses was written in 1986 and some terminology is no longer used, accepted, or changed with The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition).

"When theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on
parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent
pattern is not evident in people dealing with loss! Worse. when people believe that they are supposed to
grieve in a certain way. they often end up thinking they are doing it wrong. Secondly, the concept of
acceptance is totally unfounded. In almost twenty years of working with bereaved people, as well as
dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgment.
Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it.
Any use of grieving theory as a recipe is strongly discouraged."

I am so grateful for this article and how Dr. Moses is able to bring light to this misconception of using theories of grieving to address the emotional states that parents experience after they are given a diagnosis for their amazing child connected with a "physical disability or developmental disorder." I have personally attended several trainings as a parent where they use grieving theories to help address where parents "should be" in the stages of grieving. This left me feeling defeated and is what fueled my passion to create something different to help families understand their grieving states as a unique process with support, compassion, and a companion on your journey.

Dr. Moses follows up with the following message in his article connected to grieving:

"The parent of an impaired child separates from dreams that were shattered by impairment through grieving. Denial, anxiety, fear. depression, guilt. and anger all emerge. If they are shared with other people, these feelings help parents grow and benefit from what might be the worst tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are revealed. The reopening of these
issues changes the parent's world view. New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth. Yielding to the grieving process helps parents find the inner strength and external support needed to face profound loss', to mobilize and focus the energies needed to change their lives; to reattach to new dreams and loves in spite of feeling
abandoned and vulnerable; to redefine their criteria for competence, capability, value, and potency; to reassess their sense of significance. responsibility, and impact upon the world around them; and to develop new beliefs about the universal justice system that makes the world a tolerable place to live even though terrible losses can occur. The culturally rejected feeling states of denial, anxiety, fear. depression, guilt, and anger may be used in surprisingly positive ways when the feelings are fully shared."

How does this message help you reflect on your views of acceptance?

How is acceptance perceived in your family, culture, community and support system?

Remember, there are no right or wrong answers.

In the next story, you can see an example of the impact that culture has on acceptance and how family bonds can change in light of culture. I bring you a story called "Let it Rain" about the strong bond of a mother and child that is fully embraced by acceptance of the understanding of her child's needs.

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This is a story about the loving bond between a mother and her child, Esteban.  They take us on a journey to explore how they get through the small storms in their life.

The story is told from Esteban's perspective. He lets us into his world to better understand how his environment can trigger sensory and emotional overloads.

At the same time, mom is going through her own emotional experience and having to face some very real "generational emotional reactivity" coming from her parents. Mom will have to also take a deep look inside herself and make a decision. Will she continue the cultural cycles of communication that can create the same emotional wounds she now has from her childhood - for her child, Esteban?  How do you see mom set boundaries with her parents and acknowledge, validate, and be present for herself as well as for Esteban to help him understand his emotions?

Take a journey with us and dive into this story to explore how Esteban's mom responds to his cues and how he copes with the triggers in his environment with unconditional love and support from his mom.

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This training and workbook help you reflect on your journey as a parent, family, and caregiver providing support for a special child or family member diagnosed with a Developmental  disorder. It's important to note in this training we use the term disorder in keeping with the terminology of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013) and the 10th Edition of the International Classification of Diseases (ICD-10; World Health Organization, 1993). Take it 1 column at a time, on your time, and feel our collective support.

We explore our culture of origins, our support systems, our community, and our very identity.
We help you understand the importance of expressing yourself, the benefits of using a feelings thermometer for emotional awareness and regulation, and other self-care and coping skills.

We explore the differences between a diagnosis and a delay.
We provide you resources and tools to help you on your journey.
We even begin to identify how our sensory system impacts behaviors.

We draw from the emotional states identified by Dr. Ken Moses: fear, guilt, anxiety, shame, depression, and denial. We want to help you gain a deeper understanding of where you are, normalize your feelings, and validate your experience.

We help you understand how to draw from your past experiences, support system, strengths and needs to build resilience as a family unit.

We draw from the work by Dr. Froma Walsh to help understand, explore, and discover what resilience is as a  family.

We help you identify ways to build a network of support.

We share our own stories and journeys with you.

We are on this unique journey too and we have been there.

We explore the world through fresh new lenses to see, feel, and experience the beauty before you (your miracle child) and within you (the strong spirit of a parent) to move forward and grow together in Resilience.

Credit for the picture belongs to the Brogan Family. Thank you for supporting this project and being part of our village since the beginning of our journey in 2019.

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Feeling States can feel like a Storm.
Imagine each of these feeling states like a different storm that comes your way.

Some storms are bigger than others.

Some storms will leave you sooner than others and not cause as much damage in the form of physical or emotional pain.

Some storms will build upon one another.

Some storms feel like a hurricane while others feel like a light shower.

So, knowing there may be a storm ahead we can do our best to prepare for the storm by identifying the needed tools to protect our physical, emotional, and spiritual selves.

Go to your workbook to page 37-38. You are provided with  worksheets to help you identify and label the present and past storms while on your journey.

Remember to check in with your feelings thermometer as needed, practice relaxation skills, and take breaks.

Activity: Feelings are like drops of Rain
Pages 39-40 in your workbook.
Now, imagine that each feeling state is a drop of rain.

How did you feel reflecting and examining each feeling state?

Were you able to relate to some of the feelings states more than others?

That is OK and quite normal.

Did your partner or spouse experience different states of feelings? That is normal too.

Using art supplies: create drawings, add words, or write statements to describe each feeling state in its separate raindrop.

Take some time to reflect on your answers.

If you like, you can share them with your family and friends taking part in this exercise with you.

Remember, there are no wrong answers.

As you are ready to move forward, find some scissors and cut out each drop one at a time.

Reflect on each drop.

Read or view what you wrote or drew on each drop and experience the feeling and weight of each drop as you slowly cut out each drop from its page.

Cutting out each drop is like releasing the memory, bringing it out into the open, and letting it heal and cleanse you as you acknowledge this feeling and what each one meant for you.

What was this experience like for you?

Explore what each feeling represented at the time and how it helped you grow and learn more about the specific needs of your child that makes them special and unique.

Think about how this symbolizes the tears you shed, putting them in their proper place, and acknowledging your needs as well.

“Grief must be shared deeply and fully until the underlying issues are revealed.  The reopening of these issues changes the parents’ world view.  New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth.  Yielding to the grieving process helps parents find their inner strength and external support needed to face profound loss.  Reattach to new dreams.”

Dr. Kem Moses, Ph.D.

Let's grow stronger together.

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10F. “How experiencing loss can trigger the different grief states for parents raising children with developmental disorders.”

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10F. “How experiencing loss can trigger the different grief states for parents raising children with developmental disorders.”

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By Maria Muinde
April 22, 2021

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More Support in English and Spanish addressing the grief states of parents as described by Dr. Ken Moses.
You Tube Videos
This site is created for parents with resources from Texas.

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"Parents generate core level dreams for their children even before the child is born. Disability shatters those dreams. Grieving is the process whereby parents separate from those shattered dreams and begin creating new dreams."-Dr. Ken Moses

"The feeling of isolation at the time of diagnosis is almost universal among parents."-Patricia McGill Smith, You Are Not Alone.

The grieving process you may experience when your child is diagnosed is different from the grief you feel when someone close to you dies:

It's an unlearned and automatic process. No one has to tell you to "feel." You feel the way you do no matter what anyone else says

It must be shared. The more caregivers can communicate at difficult times like these, the greater their collective strength

Grieving is not always accepted by our society or sometimes even by the grieving person. Sometimes tears make people uncomfortable

Grieving brings out the "feeling states" of denial, anxiety, fear, guilt, depression and/or anger

Dr. Ken Moses, quoted above, categorized into stages the kind of grief felt by parents of children who have a disability. Let's look at how to recognize each of the stages, as well as ways to cope with them.

Recognizing it- Fear brings out the issue of fight or flight. The flight takes you into denial and the fight gives you the energy to reattach and generate new dreams.

We fear the unknown more than we fear the known. Having the complete diagnosis and some knowledge of the child's future prospects can be easier than uncertainty. In either case, however, fear of the future is a common emotion. You may ask yourself questions like, " Will he ever learn?" "Will he go to college?" "Will he or she have the capability of loving and living and laughing?"

Coping with it-Fears of the future can immobilize you. Living with the reality of the day at hand is more manageable if you throw out the "what-ifs" and the "then-whats" of the future. Even though it may not seem possible, good things will continue to happen each day. Worrying about the future will only deplete your limited resources. You have enough to focus on. Get through each day, one step at a time.

Guilt

Recognizing it-Guilt and concern often come in the form of questions about whether you, the parents, caused the problem: " Did I do something to cause this?" "Am I being punished for something I have done?" "Did I take care of myself when I was pregnant?" "Did my wife take good enough care of herself when she was pregnant?" A lot of self-criticism and remorse comes from questioning the causes of the disability. "Why me?" or "Why my child?"

Coping with it-Talk about the guilt feelings and don't be afraid to confront your beliefs about what caused your child to have a disability. Recognize that your beliefs have no effect on what happened in the past, or what may happen in the future. You may come to realize that your actions were not the cause of your child's disability and this will help you move forward.

Recognizing depression-Depression can make you question whether you are a competent, capable, valuable, and strong person. It is a part of the grieving process. The feeling of sadness and isolation at the time of diagnosis is almost universal among parents.

Coping with depression and anxiety-It can help to know that what you are feeling has been experienced by many, many others. You are not abnormal, and you are not "broken." You can start to calm your depression and anxiety through the support of other parents who know what you are going through.

Understanding and constructive help are available to you and your child, and you are not alone. Organizations like Texas Parent to Parent can match you with another parent to talk with about your child, your worries and fears. Parents report feeling less depressed and anxious after talking with someone who has had a similar experience.

Recognizing denial and anger-On learning that their child may have a disability, most parents react with denial. "This cannot be happening to me, to my child, to our family." Denial rapidly merges with anger, which may be directed toward the medical personnel who give you the information about your child's problem. Anger can also hurt communication between partners or with grandparents and extended family members. Early on, anger may be very intense because it is triggered by the feelings of grief and terrible loss.

Coping with denial and anger-Feelings of denial and anger are inevitable and to be expected when you realize that you must revise the hopes and dreams you had for your child. Recognizing your denial and anger is a valuable first step in learning how to let go of them. You may need outside help to do this. If getting support from other parents is not enough, consider talking to a professional.

It may not feel like it, but life will get better and the day will come when you will feel positive again. By acknowledging and working through your negative feelings, you will be better equipped to meet new challenges, and bitterness and anger will no longer drain your energies and initiative.

Laura J. Warren of Texas Parent to Parent adapted portions of this article from "Relating to Parents of the Disabled," by Dr. Ken Moses. Sherry Santa adapted other portions of this article from "You Are Not Alone", by Patricia McGill Smith.

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Parents whose child receives a diagnosis go through a different kind of grieving process. Understanding it can help you cope.

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https://youtu.be/MnU1hHFsGQc

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Now that you have a better idea of where you are within your own family's resilience factors, let's explore your whole support system.

Your support system is anyone and everyone that is willing to be part of your circle of friends (what I call my village) and it builds on each other.

Your support circle can start with your child; it then builds outward to the family/friends; continues to expand to the multidisciplinary team members (school, clergy, therapists, doctors, mentors, advocates, case managers, etc.); and it completes its expansion onto the surrounding circles that make up our whole environment like the community, social media, businesses, etc.

Use the worksheet on page 43 to identify how your needs and strengths can lead to helping you build resilience and further strengthen your family framework.

Remember, there are no wrong answers. The needs you identify in one area can be supported by the strengths in another area. This will help you explore and target needed linkage to build new relationships that will lead to strengthening resilience and expanding your support circles.

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There is a bonus activity on the next column to create your own family resilience rainbow. You can use the worksheet on page 44 for your notes on this section, to meditate or reflect on your feelings.

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Here is another way to approach your thermometer using a mix of colors, numbers, and feeling words. This is an example of one of my own thermometers after a meltdown. It is possible to have several thermometers connected to different major events that happen in your life. One of the things I like to do to help process my feelings is create a new thermometer after a major event with all of the feelings experienced, big or small, and life changing. I keep my thermometers in a binder and I date them at the top. This also helps to check in with your therapist during your sessions to see how things change with certain events.

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12A. Building a Community of Support and Sharing Your Story

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12A. Building a Community of Support and Sharing Your Story

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Everyday Mindfulness
https://youtu.be/QTsUEOUaWpY

Mind the Bump - Mindfulness and how the Brain Works
https://youtu.be/aNCB1MZDgQA

How to Practice Mindfulness: Body Scanning
https://youtu.be/bLpChrgS0AY

10 Minute Daily Calm Guided Meditation Exercise:
https://youtu.be/syx3a1_LeFo

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Dr. Camila Porra created the interactive video introductions of this training in English and Spanish.

Graphic Art and Logos created by Maria Carrillo, BFA: license purchased for designs. Copyright stays with this author, Teresa Rodriguez.

Original art illustrations created by Raven Chalk by paid commission. Copyright stays with this author, Teresa Rodriguez.

Pictures  by individuals and families connected to personal family stories and consultants are personal family photos, presentations, and events. Copyright belongs to the individual families.

All pictures of consultants are provided by each consultant and are for the sole use of this training. Do not copy or download any pictures without written consent by the consultant or this author: Teresa Rodriguez, M.S.

Hands Together  Picture utilized with permission from the Brogan Family in the United Kingdom solely for this project. Copyright belongs to the Brogan family for their picture.

Designs not specified in the previous activities are licensed under the Microsoft Power Point Designs under appropriate license.

The copyright for this training packet stays solely with this author, Teresa Rodriguez.

No part of this packet can be reproduced, stored in a retrieval system, or transmitted in any form or by any means (mechanically, electronically, recording, etc.) without the prior written consent from the author: Teresa Rodriguez, M.S. or as identified in the with permissions in the first column of this padlet training.

If you have questions or concerns regarding the material or information of this packet or need permission to reproduce, please contact the author via email: Terepuzzlingstories@gmail.com

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My son and I have been on this journey for 10 years now. I can honestly say that I cannot imagine my world without this amazing little man I get to call my son. He saved me, from me, and gave me a new purpose in life. We have experienced a great deal together and have overcome many challenges. We have gone through many changes, but each one has taught us that we can overcome anything as long as we have faith in God and work hard together.

My son calls me his "Best friend," and says, "We make a great team." I fully agree! We have experienced many setbacks and multiple regressions together. He has shown me that we can bounce back from any regression and move forward together.

The first one I noticed was when he was 18 months old following his first diagnosis of Autism. Many other diagnoses followed after that. Having the appropriate diagnosis helped us understand his unique needs, get the right authorized specialty care, and ultimately give us the support we needed (medically and financially). It is only by having these individual diagnoses for each separate condition that we have been able to get the needed services in place.

The second regression I noticed was around 3 years old following his school vaccines and the start of school. It was hard to identify the root cause of the problem due to all the changes and overwhelming amount of services: school, Home ABA, OT, PT, Speech, and the many other medical appointments that followed.

I think the last regression, followed by the Covid Vaccine in early 2022, is the one that really broke me. My son was not the same and he lost much of his speech along with developmental gains. I dropped everything that was work and school related to make a move that gave us the support we needed for his unique needs at home. The hardest thing for me, was letting go.

Letting go was something I feel was already in process after his second episode of regression at 3 years old. It took many years to have all the services of support in place that we have now with In Home Support Services, Medi-Cal Insurance with a Regional Center Waiver, the right supportive doctors, mental health services for us both, and taking a break from other therapies. Services were all cancelled with Covid, so this made it easier. Teletherapy was not normal for him, and not the right fit, for us both.

I started to home school my child while having signed up for the state private school affidavit. Thanks to IHSS being a provider that qualifies for the Public Service Forgiveness, I was able to complete my years of public service to have my student loans forgiven, for good!!

I am feeling better about owning my worth and working hard on lifting myself up. We moved to a whole new area that supported the individual needs we had along with sensory regulation support and increased space for us both. Not knowing what services were available was a little scary but we had faith that God was going to provide. I let go of trying to do it all myself and placed my complete faith in God and trusted His direction on our journey.

I let go of so much to be able to fully embrace the beauty and amazing work I had before me in raising the amazing child that I have. I returned to this very training that I started creating after my child's second episode of regression out of a need to make sense of what was happening to me, again, emotionally, and to find the support I was needing. I let go of the expectations I had of myself and my child while on this journey.

I learned, and re-learned, to just take each day as it comes, not worry too much about long term goals (even though we do create them on paper for our organizational purposes), and just enjoy each moment, together.

This new outlook has freed me from the stress I had. I feel a lot more productive, now, with what matters the most. I see it in my child, and he sees it in me. We have found a new place to call home, a renewed faith and relationship with God together, and a stronger bond with the people that we have met on our journey that are also walking this path. We may all have different situations that lead us here, but we are all working hard to do what we can for our children to see them grow and live their best lives.

I wish I could go back to give myself advice when I first started on my journey. I would tell this anxious, tired, and scared mom that it is going to be OK. I would tell her you are going to find yourself and become the best version of you that you have ever been and with the best companion by your side. I would hold her tight and just remind her to hold on to her faith, don't take no for an answer, and be fair with herself along with those that come her way. This journey is not going to be easy, but you will learn, speak up for yourself and your child, and ask God for the things that you need. I would remind her to let God take the heavy burden and trust in Him fully. I would also give her the training packet and journal that we created to serve as a daily journal and remind her that she is not alone.

So, I leave you with this FREE training and journals as a support, hug, and the love that I have for you all while you find your way on this journey. You can do this!!!!

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My name is Luisana and I am the mother of 3 children. I am raising 2 children and have another child forever in my memory.  I am writing as a mother who continues to grieve her firstborn child. I share my story in an effort to normalize the emotions and overall grief process that came with my unexpected circumstances, the loss of dreams, and decision to accept what life has given me to move forward and still feel connected to a child I will always love.

Due to an undiagnosed vasa previa my son died 5 days after being born.  It is difficult to describe the amount of pain that I felt due to the abrupt end to the vision and hopes we had for him, and having to come to terms with the situation to move forward while still carrying that grief within.  What I feel is not often talked about is that our society tends to relate more to the initial shock of loss but has discomfort in acknowledging that grief can still be occurring 5+ years later.  Yet we know that so many of us women – mothers raising children with disabilities, friends who have miscarried, those who are unsure if they should try to conceive again – carry that unspoken grief within.

My hope is that rather than internalizing or merely whispering our pain, we can be strengthened and encouraged by members of our communities of fellow grievers and de-stigmatize grief as legitimate, continuous, and normal.

To understand my grief experience, I must first share what life was like building up to the loss of my child, and the hopes and dreams I carried all through the moment of his birth as a first-time mother.

I was 27, newly married and was expecting a little boy.  I felt strong and healthy and had a pleasantly normal pregnancy. Everything seemed like it was falling right into place. However, there was always a small feeling that if everything was going so perfectly right, something was bound to go wrong. Still we prepared for him; the crib was built, the clothes were washed and folded, and my husband and I had talks about where he would go to school and who he would look like. I felt ready to be a mother. Time passed, the baby’s room was ready, the bags and supplies were packed, and I finally went into labor at 28 weeks.

We were at the hospital. I received an epidural because the labor pains were stronger than I was able to handle. The doctor walked in and ruptured my “water bag”. As soon as he did, things went bad very quickly. The baby’s heart rate dropped and I was rushed in to the operating room for an emergency c-section. I remember the lights and sounds. I remember my doctor slicing my belly to get my baby out and seconds before I was sedated, I remember seeing my baby boy’s naked little body being taken away. I repeated “Is that my baby?” “Is that my baby?” I was woken up some time later, crying, and in complete shock! I kept asking about my baby and when I would be able to see him. After a few hours, I was able to see him. He was all hooked up and connected to all kinds of machines and monitors. He was taken to a nearby hospital that had a better NICU center. I had to stay behind. I was being told he would be okay. The following day I was finally told by my doctor that I had an undiagnosed vasa previa, and when my water broke, the baby bled out. He was deprived of oxygen for a significant amount of time. I kept praying for a miracle.

Once I was released from the hospital the following day, I was finally able to meet my baby. I remember being scared to touch him for fear that I would hurt him. He was so beautiful. He was connected to machines that were keeping him alive. We were then finally able to talk to the doctor and nurses. The doctor explained his prognosis.

I remember asking why did this happen? I did everything right! I ate the right foods, exercised, and took care of myself. My baby was growing as planned and should have been a healthy new born. I asked the doctor what he would do if he was in our situation.

He was clear in saying that “the life our child would grow up to have would not be a functioning fulfilling life.”

We kept hoping and praying for a miracle. My husband and I went back and forth on what decision we would make. Should we keep our son on machines for the rest of his life or release him and end his suffering.

(This story ends here. This may leave some wondering: What happened next? What decision did they make? Is their child ok? You know what happened to this little angel as it was explained in the beginning of this story. Sometimes, its just too difficult to say the words, and that is OK.)

Some families choose to tell their whole story, while others share parts of their story. We thank the families that had the courage to share their stories to help us normalize our own experience and struggles. You don't always have to share everything that has happened in your life and the decisions you have made. Everyone's journey with grief is different and we respect, admire, and thank everyone that helped us be part of their journey along the way. Thank you for helping us make a difference in this world.

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Feelings Thermometer Packet for Children and Adults

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Feelings Thermometer Packet for Children and Adults

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I created a packet to help you explore your feelings and how to use a spotlight thermometer with your child between 3 and 5 feelings at a time. Thermometers and logos created by Maria Carrillo, BFA.

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"Listening to My Body in a Changing World" Packet 

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"Listening to My Body in a Changing World" Packet 

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I follow up at the end of the presentation with one of our packets to further support you in using tools, visuals, and coping skills to help manage your or your child's sensory support needs:

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By now, you have learned how to explore your thoughts and identify whether they are true, supportive or helpful. You have a better understanding of how to change your thoughts with the support of your journal, feelings thermometer, using effective coping skills, and exploring ways to reach out for help to get answers or support.

Even with all of these tools, you may still fall back to emotional states that are difficult to manage. This is the reason that we need a good support system that is helpful, reliable, and understanding of your needs.

There is always hope and with a good support system, you can get through any obstacle with healthy accountability and encouragement.

This is where having a community of support becomes more critical.

A study conducted by the National Academies of Sciences provided a literature review of studies identifying " that parental stress and suffering depends on parents’ subjective views of their children’s disability. Children can have very serious impairments, but, if their parents have a more positive view of the condition and have faith in their children’s potential, they suffer less and make better decisions about their children’s future” (National Academies of Sciences, Engineering, and Medicine 2016, pg 63).

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Raven is an artist and creative from England, currently traveling the world as she creates. With a background in yoga and meditation, she loves sharing her art with the intent to heal. She works with watercolor, ink and digital mediums to create pieces inspired by connection, nature and the cosmic. I am so excited to share her amazing artwork in our workbook and training. Copyright 2021 - 2023 of all artwork contracted with Raven for this project was purchased by Teresa Rodriguez and cannot be duplicated in any other work or archived in any electronic databases.

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Carolina, Parent Contributor and Editor (Spanish) (México)

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Carolina, Parent Contributor and Editor (Spanish) (México)

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I am so thankful to have the amazing support and contributions from Carolina. She contributed her family story in Spanish and has also supported other projects with editing Spanish Translations for "The Anatomy of the Rose" journal.
Instagram: @kbowiemg

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Janice, Occupational Therapist, Mental Health Therapist,  Consultant, Editor, Translator in Chinese (Mandarin/Cantonese)

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Janice, Occupational Therapist, Mental Health Therapist,  Consultant, Editor, Translator in Chinese (Mandarin/Cantonese)

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https://www.facebook.com/calebmama

Canada

Hong Kong

We are so thankful to have the amazing support and expertise of Janice in translating our material into Simplified Chinese. She brings expert and insightful support to help ensure we are being culturally sensitive and supportive of providing our tools to our families that need these resources in this language. Thank you so much for the support, expertise, and collaboration in this project Janice.

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Parent Consultant and Family Story (England)

Jamie-Lee and the Brogan family helped start our project by trusting me with sharing their family story and picture of their hands joined together. This image became the face of our first packet and journal.  I am so grateful for their support, continued friendship, and continued advocacy to build awareness of the amazing life and love that comes with having a child with Down Syndrome or any other diagnosis.

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Hsing-Wen (Grace) 張馨文, Occupational Therapist, Consultant (English/Mandarin), Editor, Translator in Chinese

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Hsing-Wen (Grace) 張馨文, Occupational Therapist, Consultant (English/Mandarin), Editor, Translator in Chinese

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United States, California

China

We are so thankful to have the amazing support and expertise of Grace in translating our material into Simplified Chinese. She brings expert and insightful support to help ensure we are being culturally sensitive and supportive of providing our tools to our families that need these resources in this language. Thank you so much for the support and collaboration in this project Grace.

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12B. Creating Your Own Resilience Rainbow

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12B. Creating Your Own Resilience Rainbow

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Remember the rain drops you cut out on pages 39-40?

You have an opportunity to create your own Resilience Rainbow using those raindrops and the Rainbow on page 44 or the rainbow in the attachment. You can print out this rainbow and instructions to create your own resilience rainbow. You can create a new one with every new storm that comes to remind you of the community and strength that lies within you all.

Design by Maria Carrillo, BFA

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13F. Catalina's Story in Spanish  (México)

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13F. Catalina's Story in Spanish  (México)

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Madre soltera de dos hijos. Una adolescente de 12 años y un niño de 8 años con Trastorno del Espectro Autista. A partir del diagnóstico de mi hijo no ha sido posible regresar a trabajar por no contar con alguien para cuidar y atender a mi hijo en sus necesidades. Al ser madre soltera no hay apoyo de ningún tipo por parte del padre o su familia para nosotros. Tuve la iniciativa de dar masajes relajantes y antiestrés por cita en mi casa pero no toda la gente accede a escuchar o convivir a mi niño antes, durante o después de la sesión de masaje. Traté de darlos a domicilio pero sólo en distancias cercanas a casa para poder dejar solos a mis hijos por unos momentos. Comencé a

elaborar manualidades a mano en fieltro. Cojines, títeres, libros didácticos, muñecos, para pequeños con la misma discapacidad que la de mi hijo y de acuerdo a sus necesidades visuales, tactiles y de manejo. Actualmente estamos en proceso legal demandando la pensión alimenticia de mis hijos. A partir de este año le concedieron a mi hijo un beneficio económico por parte del estado e un programa de discapacidad. Con esa ayuda bimestral, se cubre parte de su medicamento. Mi hija recibe una ayuda mensual por parte de la Secretaría de Educación Pública y el Gobierno de México, para cubrir parte de su material escolar y uniforme. Este programa es a nivel nacional y todos los niños en educación básica lo reciben. Con las ventas de mi trabajo trato de cubrir gastos generales de servicios y mantenimiento de mi casa, alimentación, transportes, servicio médico, ropa y calzado, etc. No es posible cubrirlo todo cada mes, así que hay cosas que se quedan para después. De las personas de las que recibo apoyo directo es mi mamá. Ella cuando tiene posibilidad me ayuda a cubrir parte de lo que llega a hacer falta y compra cosas de despensa principalmente para mis hijos, como su leche, su cereal, etc.

El CAT TELETON (Centro de Autismo TELETON) es la institución en la que recibe tratamiento terapéutico mi hijo desde los 6 años. Estar en esta institución ha sido muy importante en nuestras vidas, porque no sólo mi hijo recibe una jornada de terapia estructurada para él y en grupo por cinco horas diarias, de lunes a viernes, también yo recibo sesiones de seguimiento del proceso de mi hijo, sesiones de trabajo uno a uno con su terapeuta base y además cuento con terapia individual psicológica una vez al mes y talleres de padres de familia acerca de la condición de nuestros hijos y de superación personal. Mi hija también recibe seguimiento psicológico en sesiones de terapia familiar conmigo e individuales. Participa en los talleres de hermanos y en las actividades donde CAT abre sus puertas para que los familiares participen de las terapias y convivan de otra manera con sus hijos y hermanos. En CAT existe la filosofía de crear Redes de Apoyo y se trata de ampliar el número de personas que pueden ofrecer su ayuda, escucha, apoyo, empatía en algún momento que se necesite y no requiere formarse de familiares o parientes. Puede ser gente dentro de la misma comunidad de familias dentro de CAT o personas nuevas que como voluntarias se suman por la causa de la discapacidad. Gracias a esta red, es más sencillo enfrentar los retrocesos y retos que implica el autismo, así como las crisis, procesos de ansiedad o depresión que suelen ser comunes en los cuidadores primarios de quienes tienen este diagnóstico. En lo particular, estar dentro de la comunidad de padres en el CAT TELETON, me ha llevado a querer saber más acerca de otros padres, familias o personas que viven con otro tipo de diagnóstico, porque la equidad y la inclusión no solamente debe referirse al autismo, sino a toda la comunidad neuro divergente, al igual que también cualquier grupo o comunidad vulnerable ya sea por enfermedad, condición en desventaja o marginación social. El año pasado reuní a un grupo formado por mamás, psicólogos y terapeutas para dar pláticas acerca del autismo en centros culturales. También se hizo una pequeña campaña para informar a los estilistas y peluqueros, como manejar gradualmente las aproximaciones para un corte de cabello a personas con autismo e hipersensibilidad en la cabeza e intolerancia a los sonidos o con comorbilidad con TDHA. Este año no ha sido posible replicar la misma estrategia para ayudar a difundir y dar a conocer este trastorno y discapacidad invisible, ya que en México, por ignorancia y discriminación por ser diferente, se da mucho la violencia de algún tipo hacia quienes la padecen y sus familias. Falta mucho por hacer, pues aún hay instituciones médicas y tratamientos supuestamente terapéuticos que atentan contra la integridad de las personas con autismo, confinándolas a una segregación e índice de mortandad mayor. Así es en resumen la historia de vida que nos trajo el autismo. No pensamos en las expectativas de un futuro. Nuestro presente se convierte cada vez en nuestro futuro porque vamos caminando un paso a la vez. Si es

necesario retroceder, no es tan complicado volver a empezar. Si es necesario hacer una pausa, nos podemos detener y si es necesario acelerar la marcha, no es tan difícil después de caminar cada día.

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https://suicidepreventionlifeline.org/
1-800-273-8255

24/7 Free and Confidential Support

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Skip to main content

We can all help prevent suicide. The 988 Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals in the United States.

988

¡Los servicios de texto y chat de 988 Lifeline ya están disponibles en español!
Haga clic aquí para obtener información sobre cómo acceder a todos los servicios en español.

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Stock photo by iStock.

The 988 Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week in the United States. We're committed to improving crisis services and advancing suicide prevention by empowering individuals, advancing professional best practices, and building awareness.

About The Lifeline

Anyone could be struggling with suicide. Find more specific resources below.

I'm Struggling With Individuals with Neurodivergence

We understand that every struggle is different. Experience the stories of people like you, and how they overcame crisis to find hope and recovery.
read stories of hope & recovery

First, you'll hear an automated message featuring additional options while your call is routed to your local 988 Lifeline network crisis center.

We'll play you a little music while we connect you to a skilled, trained crisis worker.

A trained crisis worker at your local center will answer the phone.

This person will listen to you, understand how your problem is affecting you, provide support, and get you the help you need.

988 Lifeline Center calls are free and confidential, and we're available 24/7.

Show What Happens When You Call The Lifeline

Everyone Plays A Role In Suicide Prevention

Get in touch

Call the Lifeline

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Skip to main content We can all help prevent suicide. The 988 Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals in the United States. 988 ¡Los servicios de texto y chat de 988 Lifeline ya están disponibles en español!

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https://lacounty.iprevail.com/

Providing a network of support for LA County.

Get online mental health support 24/7 with on-demand coaching, lessons, & more!
English/Spanish

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This is not a crisis management program. If you have suicidal thoughts or plans, please call 911 or go to the nearest emergency room. Click if you understand, and if you agree to the Prevail Terms of Use andPrivacy Policy. I have parental consent and understand this is not a crisis management program.

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https://www.211ca.org/

Did you know that you can get support with resources from 211?

Type in the resource you are looking for (Examples):

Mental Health

Individual Therapy

Autism Assessment for Child

Crisis Management

Type in your zip code

You will see the resources in your area populate with agency names, websites, phone numbers, and hours of operations.

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California 2-1-1 Get Connected. Get Answers.

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2-1-1 makes it easy to find food, housing, job training, after-school programs and much more.

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24-Hour Disability Support Line Available—Call 1(888)847-3209 Information provided by the San Gabriel Pomona Regional Center

Counselors are available 24-hours a day, 7 days a week at 1(888)847-3209.

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https://www.psychologytoday.com/us
Find a therapist or psychologist in the needed area of support.
Type in your city or zip code and you will automatically get a long list of people with their specialties, insurance, and more.

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Psychology Today: Health, Help, Happiness + Find a Therapist

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View the latest from the world of psychology: from behavioral research to practical guidance on relationships, mental health and addiction. Find help from our directory of therapists, psychologists and counselors.

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https://www.headspace.com/lacounty
Help is available 24/7

Headspace mindfulness and meditation exercises are meant to be a source of strength and comfort. If you or someone you know is having difficulty coping with the added stress, the Los Angeles County Department of Mental Health can provide additional support at any time.

Call 800-854-7771 or visit DMH.LACounty.gov

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Meditation and Sleep Made Simple - Headspace

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Live a healthier, happier, more well-rested life in just a few minutes a day with the Headspace app.

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Coronavirus/Covid-19 Mental Health Resources LA County

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Coronavirus/Covid-19 Mental Health Resources LA County

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https://dmh.lacounty.gov/covid-19-information/
The Los Angeles County Department of Mental Health (LACDMH) supports the wellbeing of our County residents and communities. News and updates about COVID-19 may trigger anxiety, panic, frustration and depression—even when your risk of getting sick is low. During an infectious disease outbreak, please take the time to care for your own physical and mental health, and please reach out to others in kindness and compassion. Go to this website for many resources in multiple languages to support your mental health needs.

Get help now: LACDMH 24/7 Help Line (800) 854-7771 or

Contact Crisis Text Line (“LA” to 741741)

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LACDMH Resources:
The Los Angeles County Department of Mental Health (LACDMH) supports the wellbeing of our County family, friends and colleagues. When you hear, read, or watch news about an outbreak of an infectious disease, you may feel anxious and show signs of stress-even when the outbreak affects people far from where you live and you are at low or no risk of getting sick. These signs of stress are normal and may be more likely in people with loved ones in parts of the world affected by the outbreak. During an infectious disease outbreak, care for your own physical and mental health and reach out in kindness to those affected by the situation.

LACDMH has published its " Coping with Stress During Infectious Disease Outbreaks" flyer, which is available in the following languages: Arabic / Armenian / Chinese (Simplified) / Chinese (Traditional) / English / Farsi / Japanese / Khmer / Korean / Russian / Spanish / Tagalog / Vietnamese

County residents may also download and use apps to practice self-care and support wellbeing on their mobile devices. A list of suggested apps is available in our "Your Wellbeing on Your Terms" brochure.

LACDMH's 24/7 Access Line at (800) 854-7771 is also available to provide mental health support, resources and referrals.
Additional COVID-19 Mental Health Resources
For general COVID-19 information, recommendations & updates:

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Coronavirus/COVID-19 Mental Health Resources - Department of Mental Health

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LACDMH Resources: The Los Angeles County Department of Mental Health (LACDMH) supports the wellbeing of our County family, friends and colleagues. When you hear, read, or watch news about an outbreak of an infectious disease, you may feel anxious and show signs of stress-even when the outbreak affects people far from where you live and ...

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You hear the words “your child is on the autism spectrum.” What do you do next? For us, it was a combination of many things. First, the hubby and I had a long talk which included a whole lot of tears from me. Yes, tears of confusion, sadness, ignorance, frustration, impotence & anger. It was a day that I will never forget. A day in which we felt we had to let go of many expectations for our child because all we can think of is “he may never”. However, we decided that day our “papash” would have all the support necessary to thrive. We decided to tell our immediate family. The people we knew would be around to see him grow up & embrace him. Next, I met with his pediatrician to ask for speech & OT referrals. Eventually, the calls were made to schedule evaluations for the different therapies that were recommended. We made it a point to take “papash” to the park, indoor playgrounds or play dates, anything that meant he would be around other kids.  However, most of all we decided that Autism would not take over our lives.

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Welcome to our “Roots of a Dream” Training.

This enhancement is replacing the “Living the Dream” Workbook ©2019, Revised ©2020. Teresa Rodriguez

I highly recommend taking 1 to 2 hours to review each column in the padlet along with this companion workbook, 1 week at a time. Take your time to process and think about the information you are receiving and use your workbook to reflect and get to explore your current thoughts, feelings, memories, and hopes for yourself as you complete each Column.

This training was created on a padlet(https://padlet.com). Padlet provides a cloud-based software-as-a-service, hosting a real-time collaborative web platform in which users can upload, organize, and share content to virtual bulletin boards called padlets.

This packet was created in collaboration with the following amazing women:
Online Training Edited by Dr. Christine Rivera, Psy.D.

Contributions by Psychologist Camila Porrá; Jamie-Lee Weir; Celeste Roseberry-McKibbin, Ph.D., CCC-Speech and Language Pathologist, F-ASHA; Ivana Ang-Asuncion, Licensed Occupational Therapist; Luisana Cruz, B.S.; Maria Muinde; Maria Donaire Martinez, M.A, Special Education Teacher & Credential (Moderate to Severe); The Brogan Family; Hsing-Wen (Grace) Chang 張馨文, Occupational Therapist; Janice Wai Yan Lui, Occupational Therapist and Mental Health Therapist; Karen Rostoker-Gruber, Award Winning Author; Carolina Mojica Gálvez; Patty Lee, Licensed Marriage and Family Therapist (LMFT) and Registered Yoga Teacher (RYT) with Yoga Alliance RYT 200; Yolany Winters. B.A.; Tinisha Robinson, Shiela Marie Lim, Jasmine Granados, and Krista

Graphic Designs and Logo created by Maria Carillo, BFA and

Art Illustrations created by Raven Chalk

Cover design is a collaboration between Maria Carrillo and Raven Chalk.

We look forward to joining you on your journey.

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"One step at a time" I was a woman whose always trying to do so many things at once. Multi-tasking and trying to finish the task as fast as I can. Until the day I had Syden, my son.

He was two years old and 10 months when we received his first official diagnosis with Autism.

I didn’t know much about Autism back then. All I know is that he was being different and a difficult journey ahead.

There were so many tears shed, feeling down because any parent wouldn't want their child to have a difficult life ahead. From then, I kept searching and reading about Autism, thinking on how can I help my son. It was really overwhelming.

On top of it, just a few weeks after Syden's Autism diagnosis, My husband and I discovered that I was pregnant with our second child.

I was happy but worried at the same time. I started questioning myself on how can I be a good mom to another child if I didn't know how to help Syden yet.

Months passed and everything seemed fine. We were planning for our new baby's nest and Syden’s therapy sessions starting soon. Until one morning, I felt really bad but I thought it was just morning sickness. It was persisted until the next day like a feeling of impending doomed like the one that I felt when I had anaphylaxis shock a year ago. We went to the ER and received th saddest news that our new baby's heartbeat was gone.

Tears would always roll down my cheeks remembering her face in my dreams and the traumatic miscarriage that I have experienced. I suffered with Spinal Headaches for a week and there were moments that  felt really lonely and depressed for a year. I was grieving silently in pain.

I couldn't have survived that part of my life without the love from my family, most especially from my Husband, my Mother, and Syden. The love and faith in God gave me the light and strength on everything.

Syden started his Occupational Therapy and Speech Therapy and not long after this gradually bore progress. This was not an easy journey, as my husband was working and I handled the schooling duties of Syden. I remembered those times that I had to walk from one street to another whilst carrying him under sweltering heat looking for a cab going home. I soon developed severe vertigo problems. This prompted a decision to move near to my parent’s place and to look for another Developmental Pediatrician and Therapy Center near the area.

We found a Therapy Center and the owner welcoming to the parents too. The therapists were absolutely amazing and Syden got accepted in Mainstream school for Kinder 1. We decided to go for it because the school had a good reputation and it was a child-friendly community. They had three teachers in the class for kinder 1 and two teachers in kinder 2 and 3 and lastly the reason of Inclusion, with him developing a relationship with his mentors and classmates. We were open about Syden's Autism Diagnosis and they accepted him wholeheartedly.

On Syden's second consultation with a developmental pediatrician he was diagnosed with GDD or Global Developmental Delay. He was 5 years old that time and the Doctor told us that at his age she's not giving

an Autism Diagnosis and explained that if Syden couldn't reach a certain milestone it could lead to

mental retardation. Just because Syden was not in the best of moods that time he was judged to be a failure under less than an hour. So, on a unanimous decision, we never went back to her services. Syden's pediatrician, my husband and I were not convinced with the Doctor's diagnosis so a friend of mine recommended another Developmental Pediatrician and we gave it a try.

On the day of Syden's third consultation, everything went well. The Doctor was a good listener and his positivity lifted our spirits. His official diagnosis for Syden was Autism Level 2 and ADHD. I wasn’t surprised much about Syden having ADHD because my cousin has it and the symptoms that Syden shows are similar. Until He prescribed Syden a medication called Risperidone. It's an atypical antipsychotic used to treat schizophrenia, bipolar disorder, or irritability associated with autistic disorder. This was prescribed because he asked how Syden was doing in class and I told him that his teachers said that sometimes he whines and cries especially whilst doing table tasks and he wouldn't finish it. When we arrived at home, I googled it immediately. I thought it was just a simple calming medicine but I was wrong! The only thing in my mind was, I wouldn't give this to my son. I was in tears to have read a lot of side effects of Risperidone. I asked his pediatrician and he told me that he had to take a full examination test before taking this medicine which our Developmental Pediatrician didn't mention. Syden is not aggressive. He never hurts anyone. He cries and does a strong tap on his chin or chest to show his frustrations, to show that he’s upset or angry. He can't put his emotions into words and doesn't know how to self-regulate yet. Just because my child is crying or whining, I have to give a medication right away? Our children need us to hear them out even without a spoken word. They need a lot of patience and understanding from us when they're crying or showing frustrations. I'm not telling everyone to go against your Developmental Pediatrician, a prescription medication or recommendations. I'm telling everyone to research first about the prescribed medicine before giving something to your child especially now that we have access in different kinds of resources and information that can help us learn and be knowledgeable. Ask for another doctor’s opinion. Share it to a special needs parent who may know these things but most importantly, trust your instinct. No one knows your child better than you.

2020 has been a tough start after we celebrated Syden's 7th birthday on February due to the COVID-19 quarantine or lockdown.

The quarantine measures had serious impacts not only on our family but also on the lives of all children with disabilities and their families. We all were deprived to get access to essential services such as therapy and other health facilities which the lack of could lead to a devastating impact in their development.

On the first six months, we had a lot of meltdowns from Syden: calling out the names of his favorite playground, his favorite malls, and his favorite restaurants. I was heartbroken that I couldn't give that simple happiness that he was used to do on a regular basis. This added to the anxiety that this pandemic has given us.

His dad and I tried our best to make him comfortable and happy most especially during this trying time. We played a lot in our small space garage. We're doing movement activities and loads of sensory play. I cooked his favorite foods and we enrolled him in a Homeschool program, so Mommy’s duties added. I was suddenly tasked to be his teacher and I couldn’t believe I did it!

This opened up a whole new side to Syden’s development. I now have a hands-on grasp on the learning process of Syden and through this way, I’m beside him as milestone are happening before our eyes. I started to make activities that targeted his development appropriate for his learnings. There were times that he doesn't want to study and that's totally fine. It balances out with the times he himself calls for activities or “study time”. Remember to give our children a break, when they’re ready they’ll try again.

I worried so much about his development because we did not have access to speech and occupational therapy at the moment but Syden has proved me not to worry much. He has learned to ride a bicycle with training wheels, he does arts and crafts on his own, and he made different animals and things using PlayDoh. He even tried to bake Puto or Filipino rice cupcakes and amazingly he has started answering on his own thoughts this June 2021. I'm so proud of him! As I have always believed in him. Syden has taught me so many things in life and one of it is to slow down, calm down, and don't worry. Never give up because big things often have small beginnings. I always tell that to him as one of our favorite positive affirmations.

I chose to live with faith in God despite having anxiety and the bad situation that is happening around the world. I believe to never lose hope. We are all struggling but more importantly we should never give up. My son, Syden, has been my light in every sadness. He has taught me that no matter how dim the spark, we can effectively grow and learn together with our child. Let's never stop learning and educating ourselves and share our knowledge and experiences with others. Love yourself and don't feel guilty to have that precious time for yourself. You deserve it! To be a better person and to be a better parent for our children. Connection and love are always the key to communicate no matter what the situation calls for in the end.

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Shiela, Parent Mentor, Consultant (English/Tagalog), Editor, Translator in Tagalog

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Shiela, Parent Mentor, Consultant (English/Tagalog), Editor, Translator in Tagalog

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https://www.youtube.com/channel/UCWpHaXmOAIfvxEQf5e2EGPg?view_as=subscriber

Phillipines

Shiela is one of our amazing parent supporters and contributors. She has supported our project in many ways. She is an amazing friend, collaborator in creating Teachers Pay Teachers packets with a translation in Tagalog, and collaborator with other give-a-ways worldwide. We are so thankful for her support and having her in our support circle.

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Everyone has a unique way of expressing themselves. This can be in written word, painting, dancing, singing, pictures or even videos. This amazing family shares their family story through their videos. Join us in taking a dive into their story on you tube:

https://www.youtube.com/channel/UCViDCJCYkrbsd--Di1m1u2w

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Hello dear friends, Tinisha and Carmelo bless us so much by letting us be part of their life journey and now with the "Cool Cam." They provide ongoing support and show us how to just get out there and "do it" with their amazing You Tube channel. They share their life story through their videos, Family love, love for the Lord, and they find Joy in their every day lives. Join us in taking a dive into their daily adventures on You Tube:

https://www.youtube.com/channel/UCViDCJCYkrbsd--Di1m1u2w

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Jasmine is an amazing creator, mother, and friend. Jasmine recently joined our project and has helped us with expanding the support tools we provide with her digital skills to create shirts, stickers, keychains, and cups. Her talent is endless as well as her love.

We are so blessed and thankful to have Jasmine and her amazing son as part of our growing family.

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My name is Jasmine, and my son is Dominik. He was diagnosed at 3 years old with severe Autism, nonverbal, Sensory processing disorder & has extreme self-injurious behaviors due to his sensory exposure. Before my son was diagnosed, he was saying some words. He was following one step directions too. At 18 months that all regressed. With him becoming nonverbal it became hard and overwhelming for him and me, so I had to find new ways to teach him how to communicate. I had to quit my full-time job to start therapies with him. This was hard for me because I am a single mom, and my job was our only income.

After his diagnosis, it changed our lives. It took a toll on me emotionally. Mentally, it became hard to go on outings with his sensory and anxiety always so high. Having to go from just a regular mom to becoming a full-time teacher, therapist and caregiver was life changing. For Dominik, not being able to voice his needs or wants got harder as time went on. Daily tasks became difficult for us both. Learning to tolerate table time activities was also difficult and we had to teach him how to follow one step directions all over again.

I did not want to give up on my son. So, after his diagnosis, I fought for all the services he qualified for.  I had to make nonstop phone calls and basically bug the insurance company to send out referrals and authorizations. They kept giving me the run around and excuses, so I had to make sure I was on top of them. To get his diagnoses was not that difficult. I had to go through my insurance which took a while. Once it was done, I had to wait for The Regional Center to do their evaluation. This was a quick process for the evaluation but a long wait for the report.  I couldn’t get any services until I had the report from The Regional Center which took longer than expected.

I didn’t have much support during this process by anyone except my Nana. She was with me for every evaluation. She was the one that suggested me to get him evaluated. Once we were able to start services, we were approved for speech, occupational therapy, social skills, 12 hours of ABA, and mommy and me classes. I have learned from this to never give up on fighting and I realized who my real friends and family are. My son is with me all the time. We try to get breaks in between our busy schedules by going outside and playing and while he gets screen time, I try to do some arts and crafts. I have no support or help from my family. So, we try our best to make the best of each other.

On bad days It’s overwhelming for us both. I get emotional. I am usually emotionally and mentally drained by the end of the day from blocking him from self-injuries, sensory issues, and from stemming. My son needs to be supervised at all times so I cannot step out of the room if needed. It’s overwhelming most days which makes it challenging. I don’t really have time to cope. I usually just keep going on with our days that turn into long nights.

Till this day I have my good and bad days about his diagnosis. On good days we are both happy. I think about how far he has come since his diagnosis and how blessed I am to have a son that looks at me as his protector. Seeing him smile and hug me makes me fill all the love and reminds me that we can overcome all obstacles together.

It's hard to overcome at times but I never let that interfere with the love I have for my son.

I focus on the good moments and progress of my son. Some examples of his good moments are when he follows a one-step direction or using his sign language or wanting to just sit with me.

I am proud of him always and I support and encourage him in everything he does.

I hope to grow and become part of this circle of wonderful women, share my story, and learn their story, and be the best support for them also.

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5A. In the Beginning: The Origins of the Dream

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5A. In the Beginning: The Origins of the Dream

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Many of us dream of being parents from an early age. Our early childhood experiences plant the seeds that will give fruit in our later years as to how this dream will unfold and grow. Some may continue to nourish this dream and choose specific relationships to plan out their future in preparation of this dream.

“All learning takes place in the context of relationships and is critically affected by the quality of those relationships” (Norman-Murch, 1996, p. 2). Our life choices and relationships we pursue can be influenced by these early models and have an impact on how we pursue our own dreams of having a family.

Let's explore this a little more:

Go to your workbook on pages 20-21. You can use these pages to explore the following questions:

Can you recall the earliest memories you had as a child playing house, pretending to be a parent, and caring for your baby doll?

Or were you the father or caregiver with a different role?

Do you remember how those play sessions developed?

Did they resemble the actions and culture in which you were raised?

How do you feel your childhood environment, culture, and immediate family dynamics contributed to the image of your dream?

What were the seeds that were planted in your life that developed the image of your dream of becoming a parent?

Remember, there is no wrong answer. Allow yourself to take a step back and explore your thoughts, draw up details and memories, and explore your feelings around the seeds that were planted long ago.

We are with you on this journey. Take your time and don't feel that you have to complete this activity on the same day. If you feel overwhelmed at any point, stop, take some deep breaths, and come back to your activities when you feel ready to continue. We have many mental health resources for support in our resource page if needed or you can also call 211 to talk to someone right away.

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holding cup at window as a dream with black background

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The Roots of a Dream Journal Collection 

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The Roots of a Dream Journal Collection 

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Sample pages in your workbook to process and journal on pages 9 to 15. Journals are available for free download in our TPT store.

Introduction to the journals and inspiration below:

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La Raíz de un Sueño Serie de Diarios: Gratitud

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La Raíz de un Sueño Serie de Diarios: Gratitud

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Aprendizaje Socioemocional: Creciendo en la Conciencia de Mis Sentimientos (Inglés/Español)

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Aprendizaje Socioemocional: Creciendo en la Conciencia de Mis Sentimientos (Inglés/Español)

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Gratitude: Children's Activity Pack with Community Workers - Thank You Card

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Gratitude: Children's Activity Pack with Community Workers - Thank You Card

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Gratitude: Children's Activity Pack with Community Workers - Thank You Card

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Gratitude: Children's Activity Pack with Community Workers - Thank You Card

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Communication is not just about the words you speak, hear, or feel. It is also about how you connect with your child, family, and others through your tone of voice, body language, and actions. In this section we explore how we communicate to our children and family with our love, "The Five Love Languages." These concepts are from Dr. Gary Chapman and you can find more of his work on his website: https://www.5lovelanguages.com/5-love-languages/

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Dr. Gary Chapman is the author of the best-selling Five Love Languages Series and the director of Marriage and Family Life Consultants, Inc.
In collaboration with Ross Campbell, they wrote the best-seller “The Five Love Languages of Children.” They write about improving our ability to connect with our children in the deepest emotional level by speaking their love language. They identified with 5 different communication styles: Quality Time, Words of Affirmation, Gifts, Acts of Service, and Physical Touch.

Do you ever feel like you are not being heard, recognized, validated, or appreciated for all of the work you do?

Or that maybe you are not even speaking the same language?
Let’s explore this a little deeper.

Take a few minutes to take the Love Language quiz by going to this link:

https://www.5lovelanguages.com/quizzes/

You can take the quiz that best fits you. After you have taken your quiz, you can take the quiz to find your child's love language.

Let's explore what you discovered. Workbook page 46

Were you surprised about what you discovered with your love language or your child's?

Did this bring up any thoughts or feelings about how you express your love to your child?

Dr. Chapman emphasizes our need to explore how we give love to our children. Do we give love to our children in a manner that is conditional (based on what your child has done in place of just loving them for who they are) or do we express love to our children because we aim to "fill their love tank."

Dr. Chapman has coined this phrase to remind us of the need to keep filling our child's "love tank" as often as possible to fuel their day and help overcome what the day may bring. When you fill their love tank, strive to fill it with unconditional love. A love that is given unconditionally can "prevent problems of resentment, feelings of being unloved, guilt, fear, and insecurity" (Chapman, G., page 20).

In the next section, we explore our own parent expectations of our children, the 5 types of love language, how it may be expressed differently by our children with developmental delays/disorders with specific sensory needs, and what we can do to fuel their love tank each day.

Having a basic knowledge and foundation of sensory processing can help guide your daily activities with your child and make it easier to help them improve their social-emotional development as it is highly dependent on a child's adequate sensory processing (Delahooke, 2017).
(Sensory processing needs explored in Column 7 of the Helping Families Through Changes Online Training).

Chapman, Gary & Campbell, Ross. The 5 Love Languages of Children

The Secret to Loving Children Effectively. Northfield Publishing, May 1, 2016.

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14C. Identifying Your Child's Love Language

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14C. Identifying Your Child's Love Language

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Children that have developmental disorders or delays may communicate their needs differently and as parents/caregivers we may have trouble recognizing their love language. We may even feel rejected or at a loss as our attempts to show them love fails to provide the results that we may be looking for at the time.

Have you explored your own expectations of your child?

Dr. Chapman and Dr. Campbell highlight 7 different points to remember about the expectations we may have for our children in their book "The Five Love Languages of Children":

Remember, they are children and will act in childish, unpleasant, or selfish behaviors. We have to continue to model more appropriate regulated behaviors with unconditional love that shows maturity to help them understand and more likely to exhibit more mature behaviors.
Dr. Chapman provides examples of the consequences to providing conditional love and how this impacts a child's self-image, how it leads to anxiety, lack of self-control, and contribute to increased immaturity. He reminds us of our responsibility to help with the overall development of behaviors with our children that starts with our unconditional love
(Chapman, G & Campbell, R., page 24).

Keeping these concepts in mind, add on the difficulties that our children experience with sensory processing difficulties. "For children with atypical sensory and motor processing, it's far more difficult to respond to sensory input with positive social engagement" (Delahooke, 2017, pg. 60).
Working with an occupational therapist in helping you understand how your child responds to each of the sensory systems (sound, sight, smell, touch, taste, movement in space, sensations in muscles and joints, and internal sensations) and identify if your child's reactivity is due to sensory over-responsitivity, sensory under-responsitivity, or sensory craving, as a team, you can further help tailor your child's interactions to better suit their sensory preferences and making your attempts to use the five love languages that much more meaningful (Delahooke, 2017).

Were any of these ideas new to you or hard to accept?

Did these points make you think about how often and how intentional you are in filling your child's "love tank"?

Did these points help you feel more open to exploring the different ways to improve your expression of love to your child?

Let's explore the 5 love languages and see how we can begin to explore better ways to fill your child's love tank intentionally and unconditionally.

Here are the 5 Love Languages
1. Physical Touch
2. Words of Affirmation
3. Quality Time
4. Gifts
5. Acts of Service

The Love Languages packet that follows has coloring pages that help you explore and write your ideas and thoughts on which Love Language examples would most benefit your child. Workbook pages 50-54
You can use these to teach your child or family members about each love language. These pages can also be used for your quality time by making this an enjoyable coloring activity. Special note: Do not make this an activity they have to complete and instead find a time your child is in a good mood to explore and create one page at a time.

There are a lot of examples of the love languages as identified in Dr. Chapman's book. When a child has specific sensory needs or developmental delays, we can find different ways that are sensory based and supportive to help fill your child's "love tank."

We can help fill a child's "love tank" by identifying what their core needs are with a sensory regulation focus, supporting with emotional regulation, and pairing it with their identified love language in an unconditional manner.
(You can refer to Column 7 for more support on sensory regulation needs).

Begin to explore what are the physical, verbal, and emotional cues that tell you what your child may need so that you can start using these 5 love languages with the mindset of being sensory friendly and supportive first.

Let's explore some examples here:
Reminder: Use your coloring pages to take note of some of these options that may work for your child.
1. Physical Touch: Integrating deep pressure, a weighted vest or fitted clothes, a transitional object to hold or touch, a soothing chewelry toy, or some crunchy snacks provided as you work on your routine. If your child is a sensory avoider maybe turning on a white noise machine, keeping the blankets on a little longer, keeping the window curtains closed, dimming the lights, offering some noise cancelling ear phones, or using a wagon or stroller in place of walking can offer some sensory support tools when trying to provide the physical touch that is needed.
Creating a special sensory corner in their room and helping them access the different tools you use to provide sensory regulation and positive touch, creating a sensory tray that is based on items they like and seek as opposed to tasks for desensitization, and even simple things in nature like feeling the wind on your face as you lay perfectly still.

2. Words of Affirmation: You can modify this section by offering the same support in a non-verbal way with use of visuals, PECS, AAC device, letter board, signing, and written notes. Modify and monitor your tone of voice to fit their specific needs at the time to make any communication more meaningful with more attention to your body language and affect response. One of the things that I found my child to enjoy greatly is when I repeat the words he tells me and follow up with a smile, gentle eye contact, and "I like it when you share your words with me."

3. Quality Time: There are so many activities that many of our kids have to attend from school, therapy, doctor appointments, and special tasks at home that can make this section a little more difficult. You can modify your current tasks by creating a special routine to make them more enjoyable and meaningful while improving the relational approach to these tasks and activities (singing songs, special quiet time, holding special items, giving specific snacks, etc).

4. Gifts: Think about how you can modify the items provided to be sensory specific and target the needs your child has to self-regulate, to stimulate the senses, to offer opportunities to learn new words or actions, and to connect with you on a deeper social-emotional level. As your child experiences this gift, find ways to connect by making eye contact, touching a new item or texture by describing it, and experiencing it with you or family while emphasizing the emotions being experienced verbally  and physically (I like to see you happy. You jump and flap every time you get excited.) Allowing children movement like stimming supports self regulation and allows them to express joy and enthusiasm over a gift. Helping a child describe their joy with their AAC device, letter board, sign language, or visuals can support the benefits of this moment when a gift is received.

5. Acts of Service: I think as parents and caregivers raising children with specific developmental needs, we are always engaging in acts of service. This is a core area for me as I think about all of the planning and collaboration needed to ensure that school, community, home, and medical supports are aligned to prepare our children to serve themselves. It takes a lot of support, planning, collaboration, education, modeling, love, sacrifice, and cycles or practice to get our children to get to a point where they can learn to serve themselves. This is the area I feel we need the most support in as providers/parents. The Covid-19 Epidemic has caused a huge culture shift in the manner in which services are provided and rendered and not all of our children have been able to adapt to the changes, have regressed greatly, and this has impacted our families immensely. As schools, communities, and clinics begin to re-open, we have to take a closer look and re-assess the overall emotional, physical, spiritual, and cognitive needs of our children. No matter what approach you take towards these steps, remember that relationship based and child centered approaches are key to ensuring that any skills that were lost or not practiced are regained as they are supported with unconditional love. Let's fill our children's love tank first.

Now that you have a better understanding of how the 5 Love Languages are expressed, let's revisit the opening questions:
Do you ever feel like you are not being heard, recognized, validated, or appreciated for all of the work you do?
Or, that maybe, you are not speaking the same language?

What can you do more of today, to express your unconditional love to your child?

Keep a daily log of how your child responds to  your purposeful actions in showing your love in each language. In the Love Languages Packet, you can find a worksheet to use as a journal page for your child and take notes on how they respond to each of the 5 love languages.

Which one of the languages do you see they respond to the most?
This may be their primary love language.

(The 5 Love Languages of Children

The Secret to Loving Children Effectively - By Dr. Gary Chapman and Ross Campbell, M.D. Northfield Publishing, May 1, 2016.)

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The Love Languages Activity and Coloring Book Adobe Copy for TpT

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Dr. Chapman states, “Every child has an emotional tank, a place of emotional strength that can fuel him through the challenging days of childhood and adolescence. We need to fill our children’s emotional tanks with unconditional love… Unconditional love is a full love that accepts and affirms a child for who he is, not for what he does.”

(The 5 Love Languages of Children

The Secret to Loving Children Effectively - By Dr. Gary Chapman and Ross Campbell, M.D. Northfield Publishing, May 1, 2016.)

Now that we have explored the different ways you can show love and identify ways your child can respond in return with consideration of their developmental disorders and special abilities, let’s take the time to create something to help you hold onto this special feeling and re-create what your child means to you.

You can write a poem, song, letter, or create a drawing for them. There is no right or wrong answer. Let your heart and creativity guide you. Workbook page 54

As an example, I created a poem for my child that is a reminder to me about how special my child is with his unique qualities.

My Son is My Super-Hero
By Teresa Rodriguez
Copyright 2016

My son is my super-hero,

He has powers that go beyond his average age.

My son has super hearing:

He can hear my car from blocks away,

And runs to greet me at the door each and every day.

My son has super strength;

He can lift twice his weight,

To get to his mother, he will push through any wall or gate.

My son has super eyesight;

He can find any overlooked object,

That has been left by others and usually left unchecked.

My son has super sense of touch;

He can feel a chill coming before it’s at our door,

So he quickly runs to my arms for warmth, something that I adore.

My son has super sense of smell;

He can sense what is cooking quicker than anyone around,

And is the first to run for a bite of my famous Cinnabon rounds.

My son has a super heart;

He loves without asking for anything in return,

He never holds a grudge, which is something we can all learn from.

My son is my super-hero, and Autism is only a small part of who he is.

My son may have Autism, but Autism does not have him, God does.
He opened our eyes to see the world in a new way, to be grateful for all things big or small.

His strength and will surpasses his years, while giving us strength to push forward each day.

We thank our Lord and God, for our blessing from above,

For bestowing us with this miracle that has shown us how to love.

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I don’t know when my special needs mom's story begins. It all seems so hazy now, sort of like a distant memory from my past life.

What I do remember is that our gender reveal quickly turned into one of the saddest days of my life, followed by the birth of my daughter, where I was only able to hold her for a second before she was rushed to the emergency room - leaving me all alone in that hospital, with physical and emotional pain that no words could ever describe. My head filled with so many thoughts, some good, but most of them were of anger because why would God do this to me or any human being?

After one month of NICU, sleepless nights, and many hospitals and doctor visits, I lost track of time. Until it became apparent to me that I had not been present for the first three years of my daughter’s life; I was everything to my daughter, except her mother.

So I left everything; the doctors, the therapies, and the hospital visits - to hug, kiss, and love my daughter for who she is right now. No more meeting developmental goals, no more forcing her to go to therapies. Instead we replaced those therapies with more time with mom, baking cupcakes, singing songs, and exploring nature.

Doing that finally allowed me to have the connection with my daughter I've always wanted and one she had also longed for. It was like falling in love with my daughter for the first time. Everything changed for us after that.

My daughter immediately began developing more rapidly. Sometimes I wonder if she realized that the tired and broken-spirited woman that stood beside her every day was a mother waiting to love her.

Some days are a bit rough, but I trust my love for her will overcome it all with God's strength.

Today, she is in Recreational Therapy (which is more like play therapy), and out of 23 doctors, we only visit 2 to 4 doctors a year.

We are making memories we’ve never dreamed of.

By Yolany

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Yuliana has blessed us greatly by contributing to our journals and family stories. She is an amazing mother and shares her stories with our Instagram families both in English and Spanish. She has been very supporting and inspiring and I highly recommend you to take a journey and visit her wonderful home page that will fill your heart with HOPE and love. Thank you Yuliana for being part of our family and team.

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Social Emotional Learning: Growing Awareness of My Feelings (English/Tagalog)

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Social Emotional Learning: Growing Awareness of My Feelings (English/Tagalog)

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You Tube Video Companion to Life is Like A Cup of Coffee

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You Tube Video Companion to Life is Like A Cup of Coffee

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As we collectively move forward on our journey, we begin to grow as we reach out and engage with each other and building new relationships.

We wonder "Who else is on this road I am traveling on?" "Am I the only one?" "Am I doing this right?"

We may even start to experience some emotional changes as we reflect on our own journey.

There is no right or wrong way. Your choices are unique to your own life, family, and journey.

This video "Life is like a Cup of Coffee" motivated this series that helped me explore my own journey and dive deeper in viewing my life a little different. I have grown each day as I learn to build stronger, deeper, and more meaningful relationships.

I invite you to take a deeper look with me through the following videos and presentations. Thank you for experiencing life with us.

Let's get ready to watch this video together.

Before you watch this video, go to your cupboard and get yourself a cup.

Do you have some coffee brewing?

Go ahead and make your self a cup of coffee, tea, or hot chocolate. When you are ready with your filled cup, then come sit down and watch this video.

Watch this You tube video

https://youtu.be/ogweL4E24ok

When you are done watching the video, take some time to reflect on the message. You can use your FREE journal to write your thoughts, feelings, memories, or just whatever comes to your mind.

You can download your FREE journal from the links on the columns that follow.

We hope and pray this resource provides you with support and encouragement to reach out to someone and share your story or just provide you with a place to hold your story.

You matter!

Live your story.

If by watching this video, or working on any activities in this journal, you begin to have strong feelings or emotions (especially thoughts of dying or suicide) that require immediate attention or support, please STOP, and call any hotline available to you, go to your nearest emergency room, or call 911.

Hotline Numbers on the Following Sections in this Column

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"It all starts with a dream" Teresa Rodriguez - Art by Raven Chalk

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Personal Reflections: Daily Journal Introduction

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Personal Reflections: Daily Journal Introduction

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(This Story is Accompanied in Every Journal)

What if your life was like a cup of coffee?

How many endless moments, breaks, days, or nights did you spend exploring your thoughts, hopes, and dreams?

How many coffee cups have you spent formulating those dreams?

How many relationships have been created from those moments sharing a little piece of that dream?

How many bonds have been created sharing a cup of coffee, or tea, or just holding your cup in company of others?

How many times did you spend savoring the moment, feeling the warmth of that moment, creating plans around the visions that came to your mind, smelling the sweet aroma brewing in your cup, and letting the steam rise in a bond of love and friendship?

Your whole body is enchanted with the thoughts, that become dreams, that you will work to realize with the support and company of a special someone, family, or friends.

Can you visualize one of your dreams?

You can feel it surge through your whole body.

What happens when there is something that causes a disruption of that dream, a storm, a torn relationship, a tragedy, or something else?

It feels as if your dream has slipped through your hands and breaks into many pieces. Each piece begins to form its own image of a part of your dream.

It can be very difficult to even imagine that this is really happening and may even leave you in a state of denial. How can this be? You planned for so long and paid attention to every detail? You held on so tight! How could it have come to this?

You start to pick up the pieces but you feel anxious and afraid throughout the process. You start to question yourself more each day. It becomes more difficult to manage your daily tasks as you struggle with the original image that you had of your dream. You are very cautious with each piece that you gather onto your plate and realize you cannot do this alone.

As you allow others back into your dream, your personal space, and your heart, you create new bonds and start to rebuild that dream with a new community.

All the pieces come together and everyone tells you the cup is whole, but your heart is still holding onto the original cup. What is holding you back is the difficulty in accepting the change that comes with the broken dream. You even begin to compare your cup with others. This brings about feelings of guilt, anxiety, and insecurities.

You continue to experience mixed feelings that lead to depression or anger. All of these feelings are normal when you experience a loss. So, how can you resolve these feelings that appear to consume you? They come and go in waves with the passing times. You wonder what happened to you and the life you desired for you and your dream. You wonder how can you get back to where you were? How can you move forward from here?

It can start by sharing your story, one cup at a time, one relationship at a time, and one day at a time. This sharing can be done by spending some quiet time with yourself using a journal or other creative means to release your thoughts and emotions; spending quality time with supportive friends and family; talking to support counselors, life coaches, mental health therapist or a religious leader. By slowly starting to talk about these feelings it helps release the effects they have on your body, mind, heart, and soul.

It starts by grieving the loss of the “original dream” as identified in many works by Dr. Ken Moses. Art, writing, journaling, and other expressive means of therapy have been found to help cope with life’s changes, stress, grief and loss. Coming to acceptance of the changes that come in life can take time and support. The journey is different for everyone. There is no right or wrong way to do this and only you know your story best. A mental health therapist can be very helpful in guiding you on this journey.

It is not an easy road to embark on but you are not alone. I am adding an extra seat at the table for you. I offer you some tools with this journal to help you explore your emotions and thoughts. The images are reflective of how I saw my own story unfold using the symbol of the cup. This may resonate with some more than others and that is ok. I fill my cup each day by starting with me first. I then turn and look to see how I can fill the cup of those around me and surround my world with supportive people, images, and thoughts.

How can you begin to fill your cup or the cups of those that you love around you?

I want to help you begin the conversation and continue on your journey while embracing the healing process.

So where do we begin?

You start with yourself.

I offer you a chance to add some tools to your toolbox to help lift you up, normalize your experience, give your thoughts and feelings a safe place to be experienced, give you an opportunity to connect with others, and offer you resources to help you on your journey.

Let’s take it one day at a time, one relationship at a time, and one cup at a time.

(Each journal includes this story but with original artwork from Raven Chalk that brings this story to life.)

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Helping Families Through Changes Training: Presents

"The Roots of a Dream - My Daily Journal"

With this journal, workbook, and training, I offer you a chance to add some tools to your toolbox to help lift you up, normalize your experience, and give your thoughts and feelings a safe place to be experienced connected with raising your amazing child.

It is by my own personal experience of being on this journey, raising my own amazing child, with very specific needs, that I found a need to create a parent and provider companion to support our own emotional needs.

This journal features an original story and design by myself, Teresa Rodriguez.

In collaboration with the amazing artists, Raven Chalk and Maria Carrillo. we created these original images to accompany our story while adding quotes, weekly goals, and journal pages to motivate you and accompany you on your journey.

Other activities are included for increased family engagement (5 Love Languages, Bookmarks, Feeling Thermometers).

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https://suicidepreventionlifeline.org/
1-800-273-8255

24/7 Free and Confidential Support