Parenting a Child with a Disability << Parenting << Illnesses and Disabilities << womenshealth.gov

About Parenting a Child with a Disability

If you have a child with a disability, you are not alone. Millions of parents in America 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 be:

employed

satisfied with their lives

living independently, or with support, outside of their family homes

Here are some tips on helping 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.

Programs and Services

There are programs and services to 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. To find your state's contact person for programs for infants and toddlers with disabilities, visit The National Dissemination Center for Children with Disabilities' State Resource Sheet.

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. To find your state's PTI and/or CPRC, visit The National Dissemination Center for Children with Disabilities' State Resource Sheet. Look under the heading "Organizations Especially for Parents."

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. To find your state's Parent to Parent program, visit The National Dissemination Center for Children with Disabilities' State Resource Sheet. Look under the heading "Organizations Especially for Parents."

Additional Resources

Publications

A Guide to the Individualized Education Program - This guide explains the Individualized Education Process (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 and deciding placement as well as implementation and review of the IEP and what to do if parents do not agree with the IEP.

http://www.ed.gov/parents/needs/speced/iepguide/index.html

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 illustrates the kinds of Social Security and Supplemental Security Income (SSI) benefits a child with a disability might be eligible for and explains how the Social Security Administration evaluates disability claims for children.

http://www.ssa.gov/pubs/10026.html

Car Seats for Children with Special Needs — General Guidelines (Copyright © AAP) - 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/pubed/ZZZXLFM0S7C.htm

Down Syndrome: Caring for a Baby Who Has Down Syndrome (Copyright © AAFP) - This publication provides information to 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...

Finding Help for Young Children with Disabilities (Birth-5) (Copyright © NICHCY) - This fact sheet contains information for parents on the programs and services available to children and youth with disabilities as mandated in the Individuals with Disabilities Education Act and how to access these services.

http://www.nichcy.org/pubs/parent/pa2txt.htm

Lifetime Sports: Parental Roles in Facilitating and Supporting an Active Lifestyle for a Child with a Disability (Copyright © NCPAD) - This publication helps parents of children with disabilities understand how to foster a positive attitude, communicate, select activities, set goals, and more in order to facilitate and support physical activity in their children.

http://www.ncpad.org/lifetime/fact_sheet.php?sheet=450&view=all

My new baby was born with a disability. Can I still breastfeed? (Copyright © LLLI) - 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

http://www.nichcy.org/pubs/basicpar/bp2txt.htm

Parent Training and Information Centers (Copyright © NICHCY) - This publication discusses how parent training and information centers can help parents deal with issues surrounding their child’s disability.

http://www.nichcy.org/pubs/basicpar/bp3txt.htm

Parenting & Family (Copyright © WETA) - This web site contains information to help parents get organized, understand their rights and responsibilities, and provide support for their child with a learning disablity at home and at school.

http://www.ldonline.org/indepth/parenting

Parenting a Child with Special Needs (Copyright © NICHCY) - This article is written for parents who have just learned that their child has a disability and includes information about adjusting to this new life, accessing information and services, supporting the needs of the family, finding child care, and working with professionals.

http://www.nichcy.org/pubs/newsdig/nd20txt.htm

Relish is for More than Hot Dogs: Helping Students Make Their Own Sweet Success (Copyright © NICHCY) - 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://www.nichcy.org/pubs/stuguide/ta4book.htm

Organizations

= Indicates Federal Resources

Content last updated May 15, 2008.