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Parenting a child with a disability

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• More information on parenting a child with a disability

If you have a child with a disability, you are not alone. Millions of parents in the United States are raising children with disabilities. Many resources (including fellow parents) can help you along the way. Here are some tips for parents:

• Learn as much as you can about your child's disability.
• Find programs to help your child.
• Talk to your family about how you're feeling.
• Talk to other parents of children with disabilities.
• Join a support group.
• Stick to a daily routine.
• Take it one day at a time.
• Take good care of yourself.

An important quality that you will need to nurture in your child is called "self-determination." Children who develop this quality have a sense of control over their lives and can set goals and work to attain them. Self-determination is important for all children. But researchers have found that students with disabilities who also have high levels of self-determination are more likely to become adults who are:

• Employed
• Satisfied with their lives
• Living independently, or with support, outside of their family homes

Here are some tips to help your child become self-determined:

• As early as possible, give your child opportunities to make choices and encourage your child to express wants and wishes. For instance, these could be choices about what to wear, what to eat, and how much help with doing things your child wants from you.
• Strike a balance between being protective and supporting risk-taking. Learn to let go a little and push your child out into the world, even though it may be a little scary.
• Guide children toward solving their own problems and making their own choices. For instance, if your child has a problem at school, offer a listening ear and together brainstorm possible solutions. To the extent that your child can, let your child decide on the plan and the back-up plan.

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Programs and services

Every state has programs and services that can help you meet your child's and your family's needs:

• Early intervention services try to address the needs of children with disabilities and the needs of their families as early as possible. Often, the sooner issues are addressed, the better the outcome. Examples include nutrition counseling for parents, physical therapy for a baby with cystic fibrosis, or sign language lessons for a deaf child. Services vary by state.

• Special education and related services ensure that each child is given a free public education that accommodates his or her special needs. The law requires that every student with a disability have an Individualized Education Program (IEP), which is a plan for that child's education. The IEP includes a list of the services, accommodations, and assistive technology your child will need to succeed in school. Parents of a child with a disability are an important part of the team that writes the IEP. To the extent that they can, children with disabilities should also be encouraged to take part in writing the IEP.

• Parent Training and Information (PTI) centers provide parents with information about disabilities and legal rights under laws involving children with disabilities. PTIs can also tell you about resources in the community, state, and nation. PTI centers conduct workshops, conferences, and seminars for parents. And many have libraries where you can borrow books and videos. Every state has at least one PTI. Some states also have Community Parent Resource Centers (CPRCs). CPRCs do the same work as the PTIs, but they focus on reaching underserved parents of children with disabilities. Underserved parents include low-income parents, parents with limited ability to speak and write English, and parents with disabilities.

• Parent to Parent is a program that provides information and one-to-one emotional support to parents of children with disabilities. Trained and experienced parents are carefully matched in one-to-one relationships with parents who are new to the program. The matches are based upon similarities in disability and family issues.

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More information on parenting a child with a disability

Explore other publications and websites

• A Guide to the Individualized Education Program — This guide provides an overview of the Individualized Education Program (IEP). It describes the content of an IEP and who the IEP team members are. It also looks at the process of writing an IEP as well as implementation and review of the IEP and what to do if parents do not agree with the plan.
  http://www2.ed.gov/parents/needs/speced/iepguide/index.html
• Apply for Disability Benefits — Child (Under Age 18) — This resource explains how to apply for disability benefits for minors. It provides brochures and fact sheets that offer information to prepare you for the application process.
  http://www.ssa.gov/applyfordisability/child.htm
• Babies & Toddlers — This fact sheet provides information for parents on the programs and services available to children and youth with disabilities as mandated by the Individuals with Disabilities Education Act, and how to access these services.
  http://nichcy.org/babies
• Benefits for Children With Disabilities — This booklet is written primarily for the parents and caregivers of children with disabilities and adults that have been disabled since childhood. It explains the Social Security and Supplemental Security Income (SSI) benefits a child with a disability might be eligible for and how the Social Security Administration evaluates disability claims for children.
  http://www.ssa.gov/pubs/10026.html
• Developing Your Child’s IEP: A Parent’s Guide (Copyright © National Dissemination Center for Children with Disabilties) — The Individual Education Program (IEP) can be very beneficial if your child has a disability. This publication will guide you through the IEP process, from attending IEP meetings to creating goals for your child.
  http://www.nichcy.org/InformationResources/Documents/NICHCY%20PUBS/pa12.pdf
• Down Syndrome: Caring for a Baby Who Has Down Syndrome (Copyright © American Academy of Family Physicians) — This publication provides information for parents on how to care for a baby with Down syndrome. It includes information on learning disorders, health problems associated with Down syndrome, and breastfeeding challenges. There are also resources for more information.
  http://familydoctor.org/online/famdocen/home/children/parents/special/birth/339.html
• Lifetime Sports: Parental Roles in Facilitating and Supporting an Active Lifestyle for a Child with a Disability (Copyright © National Center on Physical Activity and Disability) — This publication helps parents of children with disabilities understand how to foster a positive attitude, communicate, select activities, and set goals in order to support physical activity in their children.
  http://www.ncpad.org/lifetime/fact_sheet.php?sheet=450&view=all
• MS and Children (Copyright © Multiple Sclerosis International Federation) — This resource features frequently asked questions on how children may react to a parent who has multiple sclerosis.
  http://www.msif.org/en/life_with_ms/family_friends_and_carers/ms_and_children.html
• My New Baby Was Born With a Disability. Can I Still Breastfeed? (Copyright © La Leche League International) — This publication describes the benefits of breastfeeding a baby born with a disability. It advises against using a bottle or a pacifier and provides information on supplemental feeding systems.
  http://www.lalecheleague.org/FAQ/disabled.html
• Parenting & Family (Copyright © LD Online) — This website provides information to help parents get organized, understand their rights and responsibilities, and provide support for their child with a learning disability at home and at school.
  http://www.ldonline.org/indepth/parenting
• Relish Is for More Than Hot Dogs: Helping Students Make Their Own Sweet Success (Copyright © National Dissemination Center for Children with Disabilities) — This guide is written for parents, family members, educators, and service providers who would like to nurture the development of positive self-esteem in children and youth with disabilities.
  http://nichcy.org/wp-content/uploads/docs/ta4.pdf
• Transporting Children With Special Needs (Copyright © American Academy of Pediatrics) — This fact sheet provides general information on car seats that are available for children with special needs. It also links to more specific information about car seats for premature babies, older children, and children in casts and wheelchairs with special needs.
  http://www.aap.org/publiced/BR_SpNeedsCarSeats.htm

Connect with other organizations

• Federation for Children With Special Needs
  http://fcsn.org/index.php
• MUMS National Parent-to-Parent Network, Mothers United for Moral Support, Inc.
  http://www.netnet.net/mums
• National Dissemination Center for Children With Disabilities, OSEP, ED
  http://www.nichcy.org/
• National Federation of Families for Children's Mental Health
  http://www.ffcmh.org/
• Support for Families of Children With Disabilities
  http://www.supportforfamilies.org/
• Technical Assistance Alliance for Parent Centers
  http://www.parentcenternetwork.org/national/aboutus.html

Content last updated September 22, 2009.

Resources last updated September 22, 2009.

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