If you have just learned that your child has an intellectual or developmental disability, you probably have a lot of questions. You are probably experiencing a lot of emotions. You may be worried and a little afraid. Learning about your child’s disability can help you cope with the diagnosis and find the best ways to help your child. Below are some tips on how to get more information.
Path to improved wellness
Read about it
Reading about your child’s problem can help you understand it better. Your doctor and the other people who evaluate your child can help you find reliable books, magazines, websites, blogs, and podcasts about your child’s disability. Some libraries may offer DVDs with helpful information. Your public library may be able to help you search for information online. If you have other children, you may also want to get information for them to read. This may help them understand their brother’s or sister’s disability better, which can help all of you.
Talk with other parents
Often, it helps to talk with other parents whose children have a similar diagnosis. They may be able to give you ideas about how to help your child learn. If your child has behavior problems, they may have useful hints about things that worked for them. If your child needs certain services, these parents can point you in the right direction. You may want to join a support group of parents and caretakers who have children with special needs in your area. These groups meet regularly. They can be very helpful to you, your child, and your entire family. You may also want to join a state or national organization that will give you specific information about diseases or syndromes related to intellectual disabilities.
Talk to your family doctor and other professionals
Don’t be afraid to ask your doctor for help or explanations. Many people, such as doctors, nurses, social workers, therapists, teachers, and psychologists are committed to helping children with special needs and their families. They may have ideas to share with you. They may recommend reading materials, videos, and other sources for information and support.
Sign up for newsletters and mailings
Once you find an organization you feel is helpful, sign up for its newsletters and mailings. These may be electronic or in print. These newsletters have information and tips specific to children with special needs. From learning to read to finding employment, there’s almost always something helpful now and in the future. These resources also host social and educational events that can help you meet other parents.
Many organizations host national, state, or local conferences. These conferences feature speakers and informational learning sessions. It gives you an opportunity to hear from experts, talk with other attendees (parents), and ask questions. If you find a good conference that requires travel, consider making it a family trip. One parent can attend the conference while the other parent takes the kids on little adventures.
Join school-based special education parent groups
Many school districts have established parent groups just for the special education students in their districts. These organizations offer helpful mini conferences, social lunches, and other opportunities to meet others and learn more.
Things to consider
- Be sure to find reliable websites. Not all websites offer truthful information. Typically, websites ending in “.gov” and “.org” are the most reliable.
- Stay away from negative conversation. While it’s helpful to talk with other parents, some parents are always negative. This toxic-type relationship can affect your outlook. It can make it hard for you to stay focused on your child’s best interests.
- Watch for well-meaning, but not helpful, friends and family. Much like negative parents, some friends and family members are not helpful. They may offer opinions that don’t match your goals. They may show a lack of understanding, empathy, and patience. Don’t feel obligated to take their advice.
Questions to ask your doctor
- How long is too long to experience depression after learning of your child’s intellectual disability?
- How do I know if my depression is related to my newborn baby’s diagnosis or is normal post-partum depression?
- How do I know if a treatment or therapy is unconventional?
- How do I know if I’m making the right decisions about my child’s intellectual disability?
Copyright © American Academy of Family Physicians
This information provides a general overview and may not apply to everyone. Talk to your family doctor to find out if this information applies to you and to get more information on this subject.