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Combines real family stories with expert advice along with news and opinions on disabilities.

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BLOOM combines real family stories with the best expert advice, plus the latest news and opinion on disability.

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This website has a step-by-step procedure on how to obtain special education services for your child.

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This document will provide you with tips before, during, and after an IEP meeting to help you advocate for your child.

This document will provide you with tips before, during, and after an IEP 1 meeting to help you advocate for your child.

BEFORE THE IEP MEETING

1. Organize Your Child's IEP Records

Before your child's IEP meeting, organize your child's IEP records. Choose an organizing way that works for you. This will help you prepare for the meeting. Make sure that you have an up-to-date record of all communications about your child, like emails with school staff about your child; all assessment requests, assessment plans, and assessment reports; copies of your child's IEP and any Prior Written Notice that you may have received; a copy of your procedural safeguards; report cards and progress reports; sample work; and if applicable, a behavior intervention plan and any behavior incident reports.

2. Request Assessments

A school district must assess a student in all areas of suspected disability. You may also request your child's school district to assess your child in any area of suspected disability. You may also request your child's school district to assess your child for any services they may need, like speech therapy. You should make all assessment requests in writing to the school district.

Once you make your request, the school district should provide you with an assessment plan within 15 days. Once you sign and return this plan back to the school district, the school district has 60 days to finish assessments and to hold an IEP meeting.

If you do not agree with the school district's assessment, you can ask the school district to pay for an independent educational evaluation or IEE. The school district must either pay for the independent evaluation or file for a due process hearing (the school district will have to show that its assessment was appropriate).

3. Ask for All Assessment Reports One Week Before the IEP Meeting

School districts are required by federal and state law to provide copies of assessment reports before an IEP meeting. But, there are no timelines that tell school districts how many days before the IEP meeting they must give you copies of assessment reports. Ask the school district early on to give you copies of the assessment reports a week before the IEP meeting. This is very important so that you can read the reports, write down questions you may have about the reports, and plan for the IEP meeting.

4. Plan for the IEP meeting with a Friend or Advocate

Planning for the IEP meeting with a friend or advocate can help you be better prepared at the IEP meeting.

Parent groups, like Family Resource Centers and Parent Training and Information Centers, may have advocates who can help you plan for an IEP meeting or go with you to an IEP meeting. Or, you can buddy up with another family and help each other out. If your child is a Regional Center client, your child's Regional Center Service Coordinator should help you with planning for the IEP meeting.

With a friend or advocate,

read all assessments reports,

identify your aims for the IEP meeting,

review your child's current IEP goals and all progress reports related to those IEP goals,

identify any areas of need that your child has, including special difficulties that your child has and that you want to bring to the school district's attention, and

identify what your child has achieved since the last IEP meeting and what you hope they will learn.

Discuss any IEP goals that you may want to suggest to the IEP team with your friend or advocate.

Also, talk about the option of full inclusion or increased integration. The law says that to the maximum extent appropriate, as decided by the IEP team, children with disabilities must be educated in their neighborhood schools and attend regular classes (with supplemental aids and services, as needed). If you are seeking full inclusion or increased integration, such as participation in field trips or extracurricular activities like clubs and sports, identify how your child interacts with children without disabilities outside of school and what makes it successful for your child.

5. Make a List of the Points You Want to Discuss at the IEP Meeting

No matter how well you have prepared for the IEP meeting, you may get nervous or distracted during the meeting. Preparing a written list of points you want to discuss and questions you have will help you not forget during the IEP meeting. During the IEP meeting, you can check off the discussion points and jot down the answers to your questions.

6. Submit a Written Notice to Record the IEP Meeting

If you want a recording of the IEP meeting, you can use a tape recorder or an audio recording app on your phone to record the IEP meeting. But, you can only record the meeting if you give the school district 24 hours written notice that you want to record the meeting. If you record the IEP meeting, the District can also record.

DURING THE IEP MEETING

1. Bring a Friend, Advocate, and/or a Person Who Knows Your Child

You can invite anyone you want to attend your child's IEP meeting. It is always a good idea to have someone with you. Consider bringing someone, such as a day-care provider, grandparent, tutor, or any other person who knows your child and his/her/their learning style. If you are planning to bring an advocate, including a Regional Center Service Coordinator, you may need to schedule the date in advance with them.

2. Don't Be Afraid to Ask Questions and Make Sure you Understand Any "Jargon"

IEP meetings can be overwhelming and confusing at times, even if you have attended IEP meetings in the past. Asking questions is an important way for you to be informed and prepared so that you can advocate for your child.

School districts are required to explain all findings and recommendations in easy to understand language. School district staff use the same terms every day and may forget that others do not know what they mean. If you don't understand something that has been said at the IEP meeting, don't be afraid to ask questions and ask for more information.

3. Discuss Present Levels of Your Child's Performance

The IEP team will discuss your child's present performance in different areas. This will include reviewing all reports and assessments. Your child's teacher(s) and service provider(s) will discuss their observations of your child's performance. Make sure that you discuss your observations of your child's performance, including strengths of your child and/or any concerns you have about your child.

4. Develop Annual IEP Goals and Make Sure To Set Appropriate Progress Monitoring of the IEP Goals

The IEP team will review your child's progress on past annual goals and then develop new annual goals. If your child did not meet an annual goal, the IEP team should review this goal. The IEP team should make changes to this goal so that it is appropriate for your child and/or provide additional services and supports in order to help your child make progress on this goal. The IEP team should develop goals that are ambitious and challenging in light of your child's circumstances.

Once the IEP team develops new annual goals for your child, the IEP team must let you know how often it will provide you with reports on your child's progress with his/her/their goals. If your child will be assessed using alternate achievement standards rather than the school district's general education standards (such as the California Assessment of Student Performance and Progress or CAASPP), the IEP must break down the annual goal into short-term objectives which are reviewed at specific points during the year to make sure the child is progressing on annual goals. Make sure that the short-term objectives are clear and have dates assigned to them for review of progress. If your child will be assessed using general education standard testing, his/her/their IEP will not include short-term objectives.

5. Identify Full Inclusion or Integration Opportunities and the Supports Needed for Success

School districts must provide additional aids and services to support the needs of students with disabilities in integrated settings. This can include a trained aide, use of a tape recorder, or a behavioral intervention plan to address behaviors.

6. Describe the Placement for Your Child and Identify Specific Related Services and Supports

Once the IEP team has developed annual goals for your child, the IEP team should talk about services, supports, and placement that will support your child's progress on annual goals. All related services, such as speech therapy, should be identified including how many minutes and how often (per day, per week, per month, per year) your child will receive the service.

In your child's IEP, placement should be clearly identified. For example, "Natasha will be fully included in second grade with a full-time aide and an inclusion specialist will support Natasha for five hours per week." You do not have the right to make the school district to provide services from a specific person in a specific classroom, but specific placement options should be discussed with the IEP team.

7. Sign the IEP Only if You Are Satisfied

You do not need to sign the IEP at the meeting - you can take it home to think about it and discuss with others. You can consent to part of the IEP so that those services you agree with can begin. If you sign the IEP and soon afterward change your mind, you can try to withdraw your consent by writing to the special education administrator. Withdrawing your consent, however, will not undo the education and services that occurred after you gave consent but before you withdrew consent. If you and the school district do not agree on a proposed IEP, the last IEP that you agreed with remains in effect while your dispute is resolved at a future meeting, mediation, or due process hearing.

AFTER THE IEP MEETING

1. If Possible, Be Involved in Your Child's Classroom/School

Parents have different amounts of time and money. You can contact your child's teacher or school to ask how you can help in your child's classroom or school. You can volunteer in the classroom during the school day, volunteer with a school activity, or if you work during the day, you may be able to prepare materials in the evening in your home. Being active in your child's classroom/school can help you become more familiar with the school and its staff, including your child's teacher, and help make your child feel special.

2. Support Your Child in Developing Friendships with Classmates

Help your child to develop friendships with classmates by coordinating play-dates outside of school. Having friendships with classmates will help your child to be a part of his/her/their community.

3. Monitor Your Child's Progress

You may want to set up a regular communication system with your child's teacher, such as a notebook that goes back and forth to school. A notebook can help you track whether your child is receiving services and supports. You may also want to set up a communication system with your child's related service providers, such as a speech therapist, to check in on your child's progress.

You should write down projected target dates for your child to learn particular skills, such as the dates of the short-term objectives in your child's IEP goals.

4. Options if Things Don't Work Out

If you believe that the school district has not followed special education laws or procedures and/or has failed to provide services required in a signed IEP, you can file a compliance complaint with the California Department of Education ("CDE"). The complaint is investigated by the school district or the CDE and a written determination of whether the district was/is "out of compliance" is made. See Special Education Rights and Responsibilities, Chapter 6 for details.

If you and the school district do not agree about your child's eligibility, placement, program needs, integration or related services, either of you may request a due process hearing. If you decide to file a request for due process hearing, you must file your request within two years from the date that you knew (or had reason to know) of the facts of your complaint. At the hearing, both parties present evidence to an independent hearing officer hired by the State of California. The hearing officer will decide on the facts and the law and issue a written decision. See Special Education Rights and Responsibilities, Chapter 6 for details.

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This document will provide you with tips before, during, and after an IEP meeting to help you advocate for your child. This document will provide you with tips before, during, and after an IEP 1 meeting to help you advocate for your child. Before your child's IEP meeting, organize your child's IEP records.

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These websites discuss important information for when your child is newly diagnosed with a disability. It provides great online resources for support and assistance. They also go over different types of disabilities and how to get help.

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For the Newly Diagnosed With a Disability.

Welcome! None of us expected to be here, but here we are. And I'm here to tell you, that you are still going to have a rich, rewarding, full and enjoyable life. I mean that! Please don't let anyone suck you down into that world of "perpetual grief."

Lucky for you, you came to literally one of the best places online for support and assistance. Because yeah, dealing with schools and insurance companies sucks. Not all the time, but enough to be annoying.

Find Your People

Recently I read another blog post about grieving and ableism: Grief isn't "natural" - it's a product of ableism.

As Moms, we are taught to grieve when we receive our child's diagnosis, right? I remember the ob/gyn nurse talking to me about prenatal testing. "It would give you the opportunity to mourn the loss of your typical child and begin to prepare for a life with a special needs child."

Wow oh wow oh wow. Eleven years later it still floors me. My own ob practice told me that I should mourn my child's existence.

Reading back on this, I can now say that I accept and embrace and celebrate my son. Despite everyone else telling me that this is a horrible thing. It's not.

Being disabled is not horrible and devastating. How our society treats disabled people is. So I am crossing out all the parts that no longer apply.

There is often a huge disconnect between doctors and educators and the service providers who are out there for our kids. During the days after we learned what our new life was going to be, I remember at times feeling manic like I had to do everything at once.

And at times not even wanting to get out of bed. And everything in between. So what do you do when you learn that your child has a disability?

My Child Has a Disability.

The first thing that I want to tell parents is this. Don't let others tell you that you have to be sad. You don't have to be sad. This is the same child in front of you.

Mind you, I'm only talking about developmental type things. My son has some serious medical issues that I would give my right arm for. But as far as his developmental issues, so what? So what if he's different? If you can't deal with it, that's your problem.

But your life will be different. And that's ok. Here are some things to expect.

Newly Diagnosed With a Disability

1. Acknowledge your vulnerabilities. We are a very vulnerable population. And there is a whole 'nother group of people willing to exploit that. From miracle cures to terrible and exploitative investment opportunities, there are lots of people out there willing to profit on our situations. Until you've been in this situation, the feeling is really indescribable. There are times that you will be more vulnerable than others. But try to remind yourself to enter into decisions and agreements with a clear head. Research everything that you are doing from picking health care providers and schools, to long-term financial plans. If it sounds too good to be true, it probably is. I have witnessed several families bankrupt themselves in hopes of "fixing" their kids.

2. Submit yourself to being on the learning curve. One of the most frustrating things is to not know. To not know how to help my son. To not know the intricacies of his condition. So many mornings I'd wake up and think "just today, I want to be able to say 'oooh! I know this one!' " when faced with a challenge. From IEPs to specialists and medications and new places and new faces, there is going to be so much to learn, so much you don't know. Pace yourself. You can't learn everything in a day or a week. But acknowledge and deal with the stress that comes from constantly being on the learning curve.

3. Find your people. I think it's important to keep your extended family involved, as well as close friends. But you are going to need a group of people who "get it." People who are also walking in these shoes every day. It doesn't necessarily have to be people who share your child's condition and it may be online rather than in person. It may or may not be the first group you connect with. But you will find a group of people that is a good fit for you that will serve as a support network.

4. Get a will, life insurance, and special needs trust. This is the stuff no one wants to talk about, but it is so important. You need to make sure that your significant other and all of your children are taken care of in the event that something should happen. If your child is diagnosed with a significant disability, you may be facing a lifetime of care. Children with disabilities are often more expensive to raise. Life insurance for you and the other parent is essential. You should also read up on Guardianship for an Adult Disabled Child.

5. Find three sets of "new" parents to take over as guardians. Yes, you read that right, three. I have a friend who works in this industry and she says that you would be surprised at the number of people who are listed as guardians in someone's will, and then they feel they can't do it so they decline. If often takes three sets of people because the first two say no. Sure, they said yes when you were alive. Because no one thinks that the worst is going to happen. But it does. Line up three.

6. Double-check your health insurance and apply for Medicaid for the child. You want to re-read your health insurance coverage and make sure it is adequate. Also, in many states, regardless of your income, a child with a disability may qualify for Medicaid. I am genuinely surprised at the number of parents who will not apply for Medicaid due to the stigma of being on "medical assistance." MA has saved us thousands of dollars. It would be irresponsible of me to my other child, to spend our household money on things when I really don't have to, just because I don't want people to know I'm on MA. See if you qualify and apply (insider tip: they always turn everyone down the first time, if you are declined, appeal.)

7. Re-evaluate your living arrangements (and vehicle). It was always our plan to have our boys share a bedroom growing up. Now I think that it's better for both if they have their own rooms. This will mean some minor modifications to our home. If your child is going to need a walker or wheelchair or other apparatus, start looking around as well as applying for grants for home modifications. I've written before that I'm generally not a fan of moving for the sake of an IEP. However, depending on your child's disability, you may need to be closer to a children's hospital or resources that your area currently doesn't offer. You have to carefully select new medical providers and they may not be close to your home. Maybe your home sits high up on a hill with lots of stairs that just became really impractical. Or maybe you are near a lake or ocean and no longer feel safe with a child with impaired decision-making ability. Think about what your child will need and plan ahead. This would apply to a wheelchair-lift vehicle too if that is on your horizon.

8. Embrace a lifetime of IEP meetings. Not every child with a disability needs an IEP. But if your child does, suck it up and be the best advocate you can be! There's a reason most IEP moms shrug, sigh and roll their eyes when you mention IEP meetings. They really stink sometimes. I've seen many moms get caught up in the "this is so unfair, why do I have to go to IEP meetings?" My mantra-focus on what you can control. I have to spend the next 20 years going to IEP meetings, I am going to do my best for my child and THRIVE. Learn all you can and it won't be as frustrating.

9. Re-evaluate your employment situation. Many moms of children with disabilities are unemployed or underemployed. The reason is that for the most part, the community supports just aren't out there. I'm not suggesting you march in and quit your job today. But you have to re-evaluate as your family's needs change. Maybe a new job closer to home, working from home, moving to part-time, or taking advantage of FMLA while you take care of things. All options should be considered. Sure, maintaining the status quo for income and normalcy is might be what is best for you right now. Just make sure you evaluate the situation and discuss it together so that no one is stressed or overwhelmed.

10. Develop patience for the hassles. Sometimes I want to scream. And yeah, sometimes I do. Dealing with the hassles of pharmacies, insurance companies, medical billing and all that....it's a huge pain in the ass sometimes. Now I just set aside time on my calendar when I need to do it, and mentally prepare. I spent almost a year doing an intense series of insurance appeals, and it was a whole new world. But I think you'll look back and be proud of how patient and tenacious you've become.

11. Re-evaluate your retirement. My child will likely need a lifetime of assistance and never be fully independent. As painful as it is to think that, I have to be practical. My retirement now looks very different than it did 13 years ago.

12. Plan for the future. Because the future will come, whether you want it to or not. Sit down as a family and establish a Vision. Your child should be participating to the maximum extent possible. Self-determination is always the goal!

Lastly, breathe and know that it's going to be ok. You have just received some overwhelming news. And now perhaps I've given you an overwhelming list. This list isn't designed to be done in a day or even in one year. It takes time. You will look back and see a list of challenges that you've overcome that you would have never thought possible. You will fit into your new reality. You'll find that you are in a circle of some amazing people who you would not have otherwise met.

Remember, we cannot change the cards we are dealt, only how we play the hand. While I will always wish that my son is 100% healthy, I love that we have this life. I love the people we've met and the personal growth we've experienced.

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My Child is Newly Diagnosed with a Disability | Now what?

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Welcome! None of us expected to be here, but here we are. And I'm here to tell you, that you are still going to have a rich, rewarding, full and enjoyable life. I mean that! Please don't let anyone suck you down into that world of "perpetual grief."

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This website has seven different support groups for parents and families to utilize when their child is diagnosed with a disorder.

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When your child is diagnosed with a serious injury, illness, or disability, it can feel like the world is crashing down around you. Feelings of isolation are common, but it is important to know that you are not alone. In fact, more than 10 million children in the United States have or are at increased risk of having a chronic physical, developmental, behavioral, or emotional condition that also requires health and related services beyond that is required by children generally.*

Know that there are plenty of resources to help you, your family, and your child with special needs-resources that will answer questions, support you through difficult times, and help you live life to the fullest.

Support groups for parents of children with special needs

Below is a list of family and parent support groups for children with special needs. We have even more resources for special needs children in an accompanying blog post.

1. Mommies of Miracles
The mission of Mommies of Miracles is to eliminate the isolation mothers of children with complex medical needs experience daily by providing an extended network of resources, grief support, and hope.

Their organization is a growing, international, peer-driven support group of mothers who have children of all ages, with complex care needs, many with rare or undiagnosed conditions and developmental disabilities.

2. Different Dream
Different Dream defines themselves as "a gathering place for parents of special needs children." Their website provides resources and literature, with a blog that addresses what parents of special needs children often encounter.

3. Parent to Parent
Parent to Parent is an organization that matches you with an experienced support parent who can provide emotional support and assist you in finding resources and information. A mentor who has lived through similar experiences can, for some, be more helpful than a therapist.

4. The Global Tracheostomy Collaborative
A non-profit collaborative, The Global Tracheostomy Collaborative, has a mission to increase awareness of tracheostomy care and quality of life for those in need. They're making this possible by bringing together "A multidisciplinary team of physicians, nurses, respiratory therapists, speech therapists and patients working to disseminate best practices and improve outcomes around tracheostomy care."

For families, joining this collaborative is free. You get access to the patient and family forum, and you have the ability to post to their blog and share your story.

5. Nancy's House
Nancy's Houseis a different kind of support group. It is a respite house in Pennsylvania where caregivers can come for relaxation, counseling, meditation, and therapy. There are one and three-day retreats. Payment is on a sliding scale.

If you're looking for more regular respite care for children with special needs, consider looking for a home health care provider.

6. The Arc
The Arc is an advocacy organization, and their mission is to "promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetime."

This organization is not just for the parents and family members of special needs children and adults. This organization is meant for everyone. You can donate, volunteer, or join via their website. Going to a local chapter website or location will give you even more resources, events, and programs to take advantage of.

7. The Caregiver Action Network
Joining the Caregiver Action Network (CAN) is free and gives you access to forums, information, and a large community of caregivers. CAN is a non-profit organization devoted to providing support to families and caregivers at no cost.

There is a forum for caregivers, a blog of caregiving stories, and a list of organizations and foundations to strengthen the support to caregivers of all kinds. You will also have access to local volunteers who can provide education about diagnosis and advocacy training. These volunteers are or were caregivers themselves, so they can relate to the stresses you are working to overcome.

How to find a local support group

While the support groups above provide valuable information and assistance, sometimes you want to locate a resource that's close to home. Typically, some groups are led by a facilitator while others may have a guest speaker followed by a discussion period. Here are some tips for finding local groups:

The quickest way to find support group information is most likely online. You can search relevant terms such as "pediatric support group" or "special needs parents support group" and then add in your area or town so the results can be filtered by what's local to you.

In addition to searching for groups that support parents of children with special needs, you may want to look for groups that are specific to your child's diagnosis. There are many resources for children with autism, SMA, cerebral palsy, muscular dystrophy, and more.

Contact your child's school, non-profit organizations, or local children's hospitals for information.

The Center for Parent Information and Resources (CPIR) serves as a central resource of information and products within the community. Use theirinteractive mapto find a center that serves your state.

Ask ahome careprovider even if your child isn't receiving care. Some agencies will run their own or are connected with area groups. BAYADA has greatresource information for parents.

Books on children with special needs and other parent resources

If you'd rather find support more independently, there are plenty of options for you, too!

1. Complex Child E-Magazine
The online-only Complex Child E-Magazine is free and written solely by parents of special needs children. The fellowship provided by this e-magazine is vast. You can submit your own posts for others to reference, search for articles by topic, or browse their database of information. You can also find articles that direct to local resources and organizations.

2. Strengthening Family Resilience by Froma Walsh
While this book doesn't deal with special needs children, per se,Strengthening Family Resiliencedoes offer strategies to build resilience and resourcefulness in families when crisis situations and multi-stress challenges arise.

3. Exceptional Family Member Program
If you happen to be a member of a military family, the EFMP can help ensure assignment coordination with your family's specific needs, while providing extra support: finding local support groups, accessible housing, and available advocacy groups.

4. Out of the Bubble by Shelby McGrath Meyers
From theOut of the Bubblebook jacket:

Out of the Bubble is a candid memoir of a family faced with an unimaginable tragedy. Shelby McGrath Myers lets you into her world as she recounts the life changing hospitalization of her son, Clayton; the effects on her family dynamics; their transition home with a new "normalcy" and, ultimately, the heartache of losing a child. Gripping and enlightening - the reader will witness the power of a family's love and why the story of a little boy, nicknamed "Clayton the Great", will impact your life. Shelby McGrath Myers is donating a portion of her royalties from each book sale, to Clayton's Hope Organization. A non-profit which raises funding for Epilepsy research and awareness.

Shelby also hosts Clayton's Voice, which is a part of BAYADA's Healing on the Home Front podcast series and another great resource for parents and families of children with special needs.

*Kogan MD, Strickland BB, Newacheck PW. Building systems of care: findings from the National Survey of Children With Special Health Care Needs. Pediatrics. 2009;124(suppl 4):S333-S336pmid:19948596

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Support for Parents of Children with Special Needs

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When your child is diagnosed with a serious injury, illness, or disability, it can feel like the world is crashing down around you. Feelings of isolation are common, but it is important to know that you are not alone.

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This blog aims to show the beauty of autism and strives to build a safe community for families to share their challenges of parenting children with disabilities.

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Many nights I lay awake wondering if you will be okay... I know you feel alone, but you're not alone. I am here with you. I know you are scared, but don't be, Mommy is here for you. I know you don't quite understand it all. It's ok, because Mommy is here to help you. You get angry and that's...

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Many nights I lay awake wondering if you will be okay... I know you feel alone, but you're not alone. I am here with you. I know you are scared, but don't be, Mommy is here for you. I know you don't quite understand it all.

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Discusses Individuals with Disabilities Education Act (IDEA) and families rights.

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References

Click the "References" link above to hide these references.

The Council for Exceptional Children, Public Policy Unit. 1998. IDEA 1997: Let's Make It Work. Reston, VA: Author.

Küpper, L., ed. 1998. "The IDEA Amendments of 1997." NICHCY News Digest 26 (Revised edition). http://www.nichcy.org/outprint.asp#nd26

National Information Center for Children and Youth with Disabilities. 1997. "Individualized Education Programs (IEPs)." NICHCY Briefing Paper. Third edition. Washington, DC: Author. http://www.nichcy.org/ideapubs.asp#lg2

Turnbull, H. R., and A. P. Turnbull. 1998. Free Appropriate Public Education: The Law and Children With Disabilities. Fifth edition. Denver, CO: Love.

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Rights and Responsibilities of Parents of Children with Disabilities

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The Individuals with Disabilities Education Act is a law that ensures certain rights for children with disabilities and their families. Parents have a certain role to play in the process of getting children the help they need. Find out what parents of children with disabilities can expect in this list of rights and responsibilities.

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If you're the parent or teacher of a child who's been diagnosed with a learning disability, chances are, you've felt some powerful sense of discouragement, confusion, and uncertainty surrounding the news.
Will my child or student be able to flourish in school? Will he or she face setbacks? How can I teach them in a way they can best understand?
Take a deep breath, dear Reader, because hope is not lost!

In the world of education, the term "learning disabled" is arguably the most widely misunderstood and misused. Because of the politics and haziness surrounding the term, many people reference it incorrectly, or simply don't know what's being referred to when the phrase is used.

As a parent or teacher of a child with a learning disability, it's important you are equipped with a solid understanding of the basic facts and diagnostic information before you make any lifestyle changes for the child in your care.

If this all sounds overwhelming, fret not - we are here to help!

Armed with insightful information, you'll be more successful in advocating for your child, and for his or her unique needs in the classroom, at home, and in their day-to-day lives.

Learning disabilities: what they are, and what they aren't

Let's begin by talking about the term learning disability.

Learning disability is more of an umbrella term covering a myriad of learning challenges. The phrase itself can be a problematic one, imprinting a child or young adult with the idea they are "disabled," "slow", or unable to learn at all.
This is simply not the case.
Learning disabilities are neurological conditions, meaning a child's brain is literally wired in a different way, resulting in cognitive struggles to learn when taught by conventional means.

Yes, a learning disability is a lifelong condition. No, it's not something which can be cured or grown out of.

Yes, a learning disability will require additional support and assistance, both in home and at school. No, a learning disability won't prevent your child from living a joyous, inclusive, productive life.

A learning disability may present itself as difficulty with one (or more) of the following:

Processing information. This can be through both visual or auditory channels. It has the potential to impact reading, writing, spelling, and/or understanding spoken language.

Organizing information. This looks like trouble prioritizing data and following instructions, and is generally reflected in difficulty with math and written language.

Short-term or long-term memory. Some children with a learning disability have difficulty storing or retrieving information, regardless of how many times they have been exposed to it.

Using spoken language. Difficulty processing sounds can lead to trouble using verbal language, or speaking clearly.

The mechanics of handwriting. Poor handwriting and a pencil grip that's either too firm or too relaxed can be a sign of a learning disability, in addition to sensory processing difficulties.

Types of learning disabilities

Learning disabilities are generally named for the function area they affect. The most commonly diagnosed learning disabilities are:

Dyslexia - Difficulty reading, spelling, and writing words. A dyslexia diagnosis tends to be higher in children who are also diagnosed with ADD/ADHD.

Dyscalculia - Trouble manipulating numbers and grasping mathematical concepts.

Dysgraphia - A writing disability in which a person has difficulty forming letters within a defined space.

Sensory processing disorde A condition where a person is unable to adequately process incoming sensory information, even when vision and hearing are normal. While not medically recognized as a learning disability, sensory processing disorder has a higher rate of diagnoses in children who have also been diagnosed with autism, Asperger's, and ADD/ADHD.

Nonverbal learning disabilities - A neurological disorder originating in the right hemisphere of the brain, which can lead to an uneven balance of verbal skills and physical movement. Nonverbal learning disabilities cause problems with intuitive, spatial, and organizational thinking. These children may have a lot of trouble keeping their belongings organized, or be unable to organize work on a page.

Not listed, but worthy of mention, is ADD/ADHD. While not categorized as learning disabilities, this condition has a high rate of joint diagnosis in children with several of the learning abilities listed above.

Focus on Dyslexia: What to look for

Of all the possible ways in which a learning disability makes itself known, dyslexia is probably the most well-known, yet most misunderstood of all.

For children of school age, dyslexia often becomes evident as soon as reading is introduced. Dyslexia causes problems with:

Phonemic awareness (hearing and manipulating the sounds within words)

Phonological processing (distinguishing the different sounds in words)

What does dyslexia look like?
According to the Learning Disabilities Association of America, some signs and symptoms of dyslexia to watch for in your child or student are:

They read slowly and laboriously

They understand much more when they are read to than when they read

They can't seem to read or recall the same words they knew yesterday

They have poor spelling and/or handwriting

They reverse letters and sounds when trying to read words

How do I know if my child is dyslexic?

If you suspect your child may be dyslexic, you can opt to have them evaluated by a qualified professional.

When going with your child to have them evaluated, think of the evaluation as a fact-gathering process, rather than a test taken with results delivered. Remember, the diagnosis changes nothing about the child, and only serves to give you better clarity about how to teach and guide them.

During the evaluation, information is gathered from either parents or teachers (or at times, both!) in order to gain scope of the child's strengths and weaknesses. The accompanying adult might be asked to give insight into how the child's reading and writing has developed over time.

Then, a series of tests are given to identify patterns in speech and word, which may or may not lead to a diagnosis of dyslexia.

For children in the primary grades, issues that could indicate dyslexia are:

Difficulty with rhyming, blending sounds, learning the alphabet, and linking letters with sounds

Difficulty learning spelling rules

Spelling words the way they sound (ex., 'lyk' for 'like')

Difficulty remembering short words which cannot be phonetically sounded out (ex., the, of, said)

May understand a story read to them, but struggle to read independently

It's important to keep in mind that middle school students with dyslexia can become adept at hiding their reading difficulties in order to save face with peers and teachers.

One big clue pointing to dyslexia in older children is reluctance to read. Middle schoolers who avoid reading, refuse to read aloud, or appear nervous when asked to order off a menu usually do so because of struggle and embarrassment.

Other clues of dyslexia in middle/high schoolers:

Slow, word-by-word reading

Difficulty reading words in isolation (such as a list), trouble reading nonsense words, or words not in their listening vocabulary (indicates poor or missing word-attack skills)

When speaking, may tend to mispronounce common words (ex., 'floormat' for 'format')

Comprehension is better on untimed lessons than when reading is timed

Dyslexia and self-esteem

Children with dyslexia often hear things like, "You're so smart. If only you worked harder!"

It's incredibly important for children to know that, aside from making learning to read and write difficult, dyslexia also provides them with unique, positive abilities.

Once a child with dyslexia understands this, they can better embrace who they are, which will increase their self-esteem and help them view learning in a more positive light.

In his book The Gift of Dyslexia, Ronald Davis lists eight basic abilities that all dyslexics share.

Among them are heightened curiosity, vivid imaginations, thinking mainly in pictures instead of words, and being highly intuitive and insightful. It's no wonder that some of the world's most brilliant and successful people were/are dyslexic, including:

Albert Einstein (he didn't read until he was nine!)

How to help your dyslexic child or student

Parent or teacher, the most important thing you can offer your child is support.

They need to know they are valuable and accepted; chances are, your child or student is already doing the best they can. Praise them often! And make sure the feedback you give them is well thought out.

Yes, reading and spelling are crucial skills your child will need to master during their school years (and beyond). But make sure you're paying attention to the child's strengths, rather than focusing on their weaknesses!

Here are some ways you can do exactly that:

Shine a spotlight on the skills and characteristics they exemplify well, and watch them bloom into the encouragement. By giving them a chance to build on their natural giftings - whether it's in sports, the arts, music, science, or simply being kind and eager to learn - you will help them lay a foundation of confidence which will steady them when struggles intensify.

Boost their learning by utilizing a dyslexia-based learning tool. Seek out technologies that could make the child's life easier, whether through speech-to-text devices, which allow them to speak and have their words recorded into text, or text-to-speech devices, which read to them aloud.

Because some children with dyslexia find it difficult to remain organized, help your child or student by offering them organizational strategies for keeping their homework and class materials in order. The less stress they feel about finding their schoolwork, the more peaceful they will feel when beginning a lesson.

Finally, one of the simplest ways to instill the joy of learning into your child or student is to read aloud to them. Together, share the joy of books. Don't ask them to read to you, just allow them time to relax and enjoy a good story.

Resources for teachers

If you suspect a student in your class has a learning disability, start by seeking out the special education staff in your building.

Whether or not you have experience teaching a child who struggles with an aspect of learning, there are certain skills you can implement to see what differences are made in the child's learning comprehension.

And don't be afraid to ask for help! Begin by learning two or three strategies, and see if they make a difference over the course of a month or so.

Finally, at all costs, do not criticize or penalize a student for poor reading or spelling! Remember, these children are no less capable and gifted than other children and students - they are simply wired differently.

Yes, it will take some extra work to determine whether they need a more specialized remedial instruction, and you may occasionally fail as you try new things.

But Albert Einstein famously said, "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

If you let this simple observation be your compass in working with and guiding the child in your care, you will never go wrong!

Keep reading with these similar articles:
How to Recognize ADHD at Any Age (and What Next Steps to Take!) I Think My Child Has Autism - What Can I Do, and How Can I Help?
Want to learn even more? Find dozens of videos featuring products and caregiver tips like these at Rehabmart's YouTube channel!

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My Child Was Diagnosed with a Learning Disability - Now What?

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If you're the parent or teacher of a child who's been diagnosed with a learning disability, chances are, you've felt some powerful sense of discouragement, confusion, and uncertainty surrounding the news. Will my child or student be able to flourish in school? Will he or she face setbacks?

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This website goes over special education law and advocacy. It has an extensive amount of information regarding accommodations, IEP's, strategies, and every disability.

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The Wrightslaw Way | to Special Education Law and Advocacy

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The Guidance Counselor ignored our parental consent form and conducted tests on our daughter against our written instructions, even though she signed the form acknowledging our wishes and concerns. Our Continue Reading →

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americans with disabilities education act

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individuals with disabilities education act

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The Wrightslaw Way Wrightslaw Way to Special Education Advocacy

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The Guidance Counselor ignored our parental consent form and conducted tests on our daughter against our written instructions, even though she signed the form acknowledging our wishes and concerns. Our Continue Reading →

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This blog is a non-profit organization to educate, guide and inspire families of children with learning disabilities or ADHD and to change the perception of learning disabilities

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©Smart Kids with Learning Disabilities®, Inc., Westport, Connecticut, USA. All rights reserved. Smart Kids with Learning Disabilities® is a registered trademark of Smart Kids with Learning Disabilities, Inc. SmartKidswithLD.org is the website of Smart Kids with Learning Disabilities, Inc., a non-profit organization dedicated to providing support to parents of children with learning disabilities and/or attention deficit disorders.

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Parent Information and Resources for Parental Rights Under IDEA.

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Parent Information and Resources for Parental Rights Under IDEA.

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Accurate and updated information as of October 2021
En español | In Spanish

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The federal regulations for IDEA 2004 include a section (Subpart E) called Procedural Safeguards . These safeguards are designed to protect the rights of parents and their child with a disability and, at the same time, give families and school systems several mechanisms by which to resolve their disputes.

The most notable procedural safeguards include those listed below. To learn more about any of these, click on the text in red, and you'll go to a separate page describing that procedural safeguard.

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These are not the only procedural safeguards under IDEA, but they are the most relevant to the majority of parents. Therefore, in this series of pages on IDEA's procedural safeguards, we will explore only eight ...the ones mentioned above. Use the links above (the text in red) to read more about each one of these safeguards.

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Accurate and updated information as of October 2021 En español | In Spanish _____________ The federal regulations for IDEA 2004 include a section (Subpart E) called Procedural Safeguards . These safeguards are designed to protect the rights of parents and their child with a disability and, at the same time, give families and school systems several mechanisms by which to resolve their disputes.

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Parent information and resources for the birth or discovery of a child with a disability.

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The birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In You are Not Alone, Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a disability. In this article, we will provide additional information to support the life cycle, health, and well-being of the family when a member has a disability.

It is with a great deal of humility that we are even attempting to describe what the future may hold for you and your family. On the one hand, we want you to be as prepared as possible so you can negotiate the challenges that may await your family. On the other hand, we recognize that individual variation and differences are the rule when a child has a disability. Researchers often base their findings on group data - what happens to the majority of people in a circumstance. However, what might be "true" in a research sense may not be at all true for your family. Therefore, while we hope this article will guide you to sources that are helpful, take from our discussion only what you need.

The journey
Growth is endless and our lives change and change us beyond anticipation. I do not forget the pain - it aches in a particular way when I look at Jessy's friends (her paid companions), some of them just her age, and allow myself for a moment to think of all she cannot be. But we cannot sift experience and take only the part that does not hurt us. ()
No parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child's illness or disability.

Many parents have described the progression - and pendulum - of feelings they experienced upon learning that their child has an illness or a disability. Patty McGill Smith touched upon many of these emotions in her article - shock, denial, grief, guilt, anger, confusion. The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and acceptable. Stability does return, both to the individual and to the family. Parents begin to search for needed information. Many report feelings of personal growth that are often, in retrospect, astounding to them. One mother, reflecting on life after the birth of a child with spina bifida and other disabilities, says:
I have learned, and grown, more since Dylan's birth than any other time in my life. You learn patience, and you get to witness miracles that you otherwise would have been too busy to have noticed...You learn acceptance, you realize you have been wrong to judge, and you learn that there is a thing called unconditional love.
Taken together, the many suggestions and insights offered by parents who have lived for years with the experience of disability in the family can provide parents who are new to the experience with much guidance and support. The remainder of this article will outline many of the ways that parents have helped themselves and those they love adjust to living with and caring for a child with special needs.

Access information and services

One of the first things you can do that may prove enormously helpful, now and in the future, is to collect information - information about your child's disability, about the services that are available, and about the specific things you can do to help your child develop to the fullest extent possible. Collecting and using the information available on disability issues is a critical part of being a parent of a child with special needs. Fortunately, there is a great deal of information available on many disabilities and many disability issues.

Join a group

Much of the information that will be helpful to you is in the hands, heads, and hearts of other parents like yourself. For this reason, it is worthwhile to join a parent's group. Some groups are organized around one particular disability (e.g., cerebral palsy, Tourette syndrome, Down syndrome), while other groups draw together parents who, irrespective of the disabilities of their children, have similar concerns, such as daycare, transportation, coping, or finding out about and supporting special education in their community. Within each of these groups, information, emotional and practical support, and common concerns can be shared. The power of this mutual sharing to combat feelings of isolation, confusion, and stress is a consistent thread running throughout the literature written by and for parents.
Our children had Down syndrome, seizure disorder, holes in the heart, premature birth, deafness, and cerebral palsy. I hated the repeat surgeries, but one mother wished her child had a condition that doctors could fix. I struggled with how to respond to strangers, but another mother wanted her child's condition to be visibly obvious so strangers would understand why she wasn't doing what other six-month-old babies did..It was powerful to simply congregate with other mothers whose babies had special needs, hear the variation in stories, see the experience refracted through the crystal of multiple identities.
Parent groups aren't only for mothers, though. Don Meyer writes of running "fathers-only" workshops where fathers came together to exchange insights and trade war stories.
Often the din of the conversation was such that we were asked "to keep it down" by presenters in neighboring rooms. Fathers became so involved in talking to their peers that we sometimes needed to shoo them out of the room at the end of the meetings... All this from fathers who "don't say anything." Clearly these men have much to say, and much to offer one another.
There are many ways to identify a parent group in your area. A good starting place is your state's Parent Training and Information Center, the PTI. Not only can the PTI help you understand your child's rights, the services available in the community, and how to advocate for your child, this valuable resource can also put you in touch with parent groups locally and in the state.

Read books written by (and for) parents

You may also find it helpful to read many of the excellent resources - books, articles, websites - that are available on disability issues. Some are quoted in this publication. Others are listed on disability fact sheets. Worthwhile suggestions about what to read can come as well from talking to a local librarian, your child's teacher, or other involved professional; contacting a national, state, or local disability group; or talking to other parents of children with disabilities.

Find out about services

The search for available services is a challenge for families and one that continues as the child's needs change. Most of these services are made available because of legislation at the federal and state levels. For a quick read on the educational rights of children and youth with disabilities, try: Questions Often Asked by Parents about Special Education Services.

Typically, there are many services available within communities, districts, and states to assist you in meeting the needs of your child with disabilities and your family. Families with a young child with disabilities (birth through the third birthday) should access early intervention services , which are designed to identify and treat developmental problems as early as possible. For school-aged children with disabilities, special education and related services can be important factors in addressing a child's educational needs.

Early intervention services: Early intervention services are designed to address the needs of infants and toddlers with disabilities as early as possible. These services can range from feeding support from a nutritionist in a hospital to developing a complete physical therapy program for an infant with cerebral palsy. However, these services are not just for the child with special needs. When framing the law describing early intervention services, Congress recognized that families are central in a young child's life. Therefore, the family's priorities, concerns, and resources are a major consideration when planning services for infants and toddlers with disabilities. The plan that is developed through this process is called an Individualized Family Service Plan (IFSP).

Parents, too, can benefit from early intervention services. As full members of the team developing the program for their child, they can learn skills that may be useful for a long time - skills in helping their child learn and develop, as well as skills in decision-making, planning, being of support to others, and influencing policy-making in their community.

The services themselves are offered through a public or private agency and are provided in different settings, such as your home, a clinic, a neighborhood daycare center or Head Start program, a hospital, or the local health department. Initial evaluation and assessment of your child will be provided free of charge. Services may also be provided at no cost, although this may vary from state to state. Some states charge a "sliding-scale" fee for services.

Special education and related services: Through the mandates of two federal laws - the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 - each eligible child with special needs is guaranteed a free appropriate public education designed to address his or her unique needs. This education is planned by a team, including the parents of the child.

Thus, as parents, you are key participants in the team that determines what type of special education your child will receive. Together, the members of your child's team develop an Individualized Education Program (IEP), which states in writing the educational program that is planned for your son or daughter.

There are many books and websites that are particularly useful if you are seeking to understand and access special education services. This includes the material immediately available here at the Center for Parent Information and Resources to explain the special education process. We've listed a few webpages you might like to read to learn more.

Supporting and empowering family

You're the heart of the family

Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents. You, as parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child's disability - doctors, child care providers, family members, your child's school, the professionals who work with your child. You also maintain the household - working to pay the bills, shopping, cooking, cleaning up, taking care of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed?

Therefore, it is very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really enjoy, even if you can only squeeze them in occasionally. As one mother relates:
I would sometimes retreat to my "tower" and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn't last more than a half hour, and it was never enough, but it helped me break the "martyr" pattern of thinking I was required to live and breathe only for my children. In those brief moments of quiet reflection I could renew my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more.
Many families will be single-parent families, but for those who are not, the relationship between the parents is a factor that can influence the family's well-being. When the parents' relationship is a strong and supportive one, it enriches family life for all members. Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know-that marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound. As Kelly Harland puts it, "[H]ow unexpectedly it all unfolds. One moment, you and your lover are singing along in bad Italian with Venetians in a crowded bar...red wine pouring out of nowhere. And the next minute, the two of you are filling out disability forms for your tiny son."

Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity. Talking to each other and really listening are also important-and conversations do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space. As one parent puts it, "Realize that you do not deal with this stress in the same way your spouse does. Let your spouse deal with it in their own way, and try to come to an understanding of your differences." Another parent shares, "At these lonely moments, the greatest gift was simply to let the other be."

Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the "we-ness" that goes behind teamwork.

Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other's needs and concerns more fully and found ways of discussing and resolving their differences. As one parent says, "We steer a rocky ship, my husband and I...We have had to check in with the therapist, sometimes once a year, sometimes once a week. We've experienced a hard distance between one another from time to time, as Will in all his complexity takes over every spare second of our lives. We have hung on, though. Our hearts are bonded by something that goes even deeper than love."

Brothers and Sisters

We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child's brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between siblings.

The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories. For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development. Megan, age 17, says of her life with her brother who has Down syndrome:
Every day Andy teaches me to never give up. He knows he is different, but he doesn't focus on that. He doesn't give up, and every time I see him having a hard time, I make myself work that much harder...I don't know what I would do without Andy. He changed my life...If I had not grown up with him, I would have less understanding, patience, and compassion for people. He shows us that anyone can do anything.
In contrast, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents' energy, attention, money, and psychological support flow to the child with special needs. As Angela, age 8, puts it, "[T]here are times when I sit down and think, 'It's not fair!'"

And many, many siblings swing back and forth between positive and negative emotions. Helen, age 10, whose sister has severe intellectual disabilities and seizures, begins by saying that she's glad to have a sister with special needs. "It has opened my eyes to a world of people I never would have known about." But she also says, "Sometimes I wish I had special needs. I think that a lot when Martha gets ooohed and aahed over and nobody even thinks about me." And then in the next breath, Helen says, "Another thing is that it really makes me mad when kids slap their chest with their hands and go, 'I'm a retard!' It made me so mad!"

The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about "catching" the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children.

Clearly, it is important for you to take time to talk openly about your child's disability with your other children, explaining it as best you can in terms that are appropriate to each child's developmental level. As Robert Naseef remarks, "Just as parents need information, so do siblings, on their level."

If you're concerned about sibling issues, have a look at our Siblings page, where you can connect with helpful resources, including support groups available to your children. These can provide an "excellent outlet" for siblings to share their feelings with others in a similar situation.

Your Child with Special Needs

Much of how you raise your child with a disability will depend on your family's personal beliefs about childrearing, your child's age, and the nature of his or her disability. An important point to remember is that most of the regular child-raising issues will apply - children with disabilities will go through the usual childhood stages. They may not go through stages at the same age, at the same rate, or use the same words as children without disabilities, but they are children and kids are kids.

We, as parents, may believe that all children should be treated the same, but in practice that is usually not the case. Why? Because anyone who has been around children, even infants, knows they have different personalities and react differently to similar situations. We encourage and coax the shy child and set limits for the rambunctious one. We tell the loud ones to be quiet and the quiet ones to speak up. We offer different activities to the child who loves to paint than to the one who wants to play ball. Children just are not the same - but they should have the same opportunities.

Among their opportunities should be the chance to assume increasingly greater degrees of responsibility and independence. There may be many ways in which your child can help himself or herself or other members of the family, including doing chores around the house. You will need to consider what these activities might be, given your son or daughter's disabilities and capabilities. As you expect and encourage your child to assume responsibility, his or her sense of pride and competence will also increase.

Conversely, to not expect or encourage your child to contribute to self-care or household matters may send the message that he or she is not capable of helping. Dependence is fostered instead. As one mother insists, "Let him do things for himself. Don't baby him. My father-in-law noticed how Chrissy can manipulate people very well...[His] comment was, 'Boy, he wouldn't walk anywhere if he could find someone to carry him all over.' Yup. That's why we don't carry him!"

Of course, the nature and severity of your child's disability may affect how much he or she is able to participate in household duties and so on. Peggy Finston remarks:
The issue, then, for each of us is what is a "realistic" amount of normality to expect from our child? If we expect too much, we run the risk of rejecting him as he is. If we expect too little, we will fail to encourage him to do the most he can with himself. There is no one answer for all of us, or even for all of us dealing with the same condition. The best we can do is to realize that this is an ongoing question that we need to consider.
Another issue that may concern you is what (or whether) to tell your child about his or her disability. As with siblings, the child with special needs may also have a need for information and perspective about what makes him or her different.
Now my hug becomes tighter, closer. I feel my breath in his tousled hair. "Will, do you ever wonder why you get so scared when something comes out of the blue, why it upsets you so much?" He sniffles. "Yeah." I hesitate. I'm feeling terribly warm. I never wanted to introduce my child to the label someone else created for him. And yet an instinct tells me it may help him....
This is how Kelly Harland describes the conversation she had with her son when she told him about his disability, autism.
And now he's still. He has calmed down. He's listening. ...And silence, as I try to imagine where to go next. Maybe I'm all wrong. Maybe I should never have used that word. But an odd rush comes over me. It feels like, with this tentative back-and-forth, we've suddenly crashed through some floodgate....Has Will known for awhile that he has a problem; has he been waiting for his mom to explain it to him? There is in all this talk something for both of us to hold onto, maybe in this one moment a way to quell the terror, or even rise above it.
As your child grows and matures and especially as he or she edges into young adulthood, it may be very helpful for him or her to be able to discuss the nature of the disability. This includes what special accommodations he or she needs in order to succeed in school and other settings.

You may wish to involve your child in his or her own IEP meeting, which can teach your child useful skills like self-advocacy, expressing personal interests and goals, and being involved in making decisions that affect his or her life. In fact, by law, whenever your child's transition to life after high school is going to be discussed at an IEP meeting, your child must be invited to attend the meeting. To learn more about transition planning and student involvement in IEP meetings, visit the Transition Suite.

Grandparents (and the Rest of the Family)

Grandparents are often greatly affected by the birth of a child with a disability. "They face the double grief of their grandchild's disability and their own child's pain." It is important to remember that they will need support and information, too. (This is true for other members of the family as well.)

Therefore, your parents and other members of the extended family need to be given opportunities to get to know your child as a person and not just a person with disabilities. Help them to understand your child's strengths and needs, help them to accept him or her as part of the family. Allowing family members to become involved with your child may also allow you some much-needed time away from the responsibilities associated with caring for a child with special needs.

Care givers

All parents, at some time, will probably seek child care. For families with a child who needs more supervision or specialized assistance, child care may be difficult to find - or feel comfortable with. However, even if you do not work outside the home and do not need regular child care, you may benefit greatly from having child care on a periodic or even an ongoing basis. This will give you time to take care of personal matters, enjoy some leisure activity, or be relieved of the constant need to care for a child with a disability or chronic illness.

You may also benefit from respite care, a system of temporary child care provided by people familiar with the needs of children with disabilities. "Temporary" can range from an hour to several months, depending on the respite care provider and the needs and desires of the family. Many respite care providers have undergone specialized training and can knowledgeably care for children whose needs may range from close supervision to medical care. Respite care can be provided to infants, teenagers, or adults with special needs. In some cases, the respite provider may be able to provide care only for the child with the disability; in other cases, care may be available for siblings as well. Respite care generally differs from daycare in that it is not available on a daily basis to allow a parent to return to the work force.

To find out more about respite services, contact the ARCH National Respite Network and Resource Center. ARCH operates the National Respite Locator Service whose mission is to help parents locate respite care services in their area.

Although many parents initially may feel reluctant to leave their child with special needs in the care of someone else, those who have tried it give ample testimony to its value in restoring their energy, sense of humor, and perspective.

Working with professionals

Over 20 years ago, parent Cory Moore, speaking directly to professionals, wrote:
We need respect, we need to have our contribution valued. We need to participate, not merely be involved. It is, after all, the parent who knew the child first and who knows the child best. Our relationship with our sons and daughters is personal and spans a lifetime.
This sentiment echoes throughout the parent literature and in the hearts of parents everywhere. Not surprisingly, many of the materials written by parents for other parents offer insight into how you might work together with professionals for the benefit of your child and family. The best relationships are characterized by mutual respect, trust, and openness, where both you and the professional exchange information and ideas about the best care, medical intervention, or educational program for your child. Both you and the professional need to speak clearly about issues and listen carefully. Indeed, both of you have important expertise to share.

You, for example, have intimate knowledge of your child with special needs. You live with and observe your son or daughter on a daily basis and can contribute invaluable information about his or her routine, development, history, strengths, needs, and so on.

The professional, too, has specialized knowledge to contribute-that of his or her discipline. Often you must rely upon the professional's judgment in matters that are critical to the well-being of your child.

Thus, there should be a mutuality in the parent/professional relationship. This can take time to develop and may require effort from both parties. To that end, many parent writers suggest:

If you are looking for a specialist with whom you can work well, ask other parents of children with disabilities. Often, they can recommend a good speech or physical therapist, doctor, dentist, or surgeon.

If you don't understand the terminology a professional uses, ask questions. Say, "What do you mean by that? We don't understand."

If necessary, write down the professional's answers. This is particularly useful in medical situations when a medication or therapy is to be administered.

Learn as much as you can about your child's disability. This will assist you with your child, and it can help you participate most fully in the team process.

Prepare for visits to the doctor, therapist, or school by writing down a list of the questions or concerns you would like to discuss with the professional.

Keep a notebook in which you write down information concerning your special needs child. This can include your child's medical history, test results, observations about behavior or symptoms that will help the professional do his or her job, and so on. (A loose-leaf notebook is easy to maintain and add information to.)

If you don't agree with a professional's recommendations, say so. Be as specific as you can about why you don't agree.

Do whatever informed "shopping around" is necessary to find a doctor who understands your child's needs, is willing to work collaboratively with other medical professionals, and with whom you feel comfortable.

Measure a professional's recommendations for home treatment programs or other interventions against your own schedule, finances, and other commitments. You may not be able to follow all advice or take on one more thing, feeling as Helen Featherstone did when she wrote, "What am I supposed to give up?...There is no time in my life that hasn't been spoken for, and for every fifteen-minute activity that has been added, one has to be taken away." Peggy Finston points out that "most professionals won't be familiar with the sum total of our obligations and will not take it upon themselves to give us permission to quit. This is up to us. It's in our power to make the decision."

In conclusion, it is important that the parent/professional relationship empower the parent to be a full participant in information-gathering, information-sharing, and in decision-making. However, it is ultimately up to you to decide what role(s) you want to take in this process and what role(s) you need help with. It is helpful to know that families do, indeed, choose different roles in relationship to professionals. Some parents want to allow professionals to make most decisions about their child, others want to serve as an informant to the professional, some want veto power, and some parents want a shared role in the intervention with their child.

You are also free to change your mind about the role or level of involvement you may want or be able to assume regarding your child's services. You may find that you choose different roles at different times for different purposes. Be as direct as possible about what you want or don't want to take on in this regard.

Summary

In this article, we have looked at many of the issues facing you as parents of a child with a disability. Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available through public agencies that can assist your entire family - early intervention services for infants and toddlers and educational services for preschoolers and school-aged children. Having access to information and supports may be critical in maintaining a stable and healthy family life.

We urge you to read, to talk to other parents who have a child with a disability, to talk with each other and with other family members, and to reach out for assistance when you need it. We conclude with the words of Clare Claiborne Park, as she reflects upon the experience and emotions of being a parent of a child with disabilities.
This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare - that one grows by suffering. And that too is Jessy's gift. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands - because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.

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The Unplanned Journey: When You Learn That Your Child Has a Disability

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The birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In this article, you'll find information to support the life cycle, health, and well-being of the family when a son or daughter has a disability.

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This website has great resources for families such as: Special Family Events, Resources, Workshops, Clinics, & Groups, and Blogs.