Special Needs Support Groups

Would I find support groups helpful?

Many parents find it useful to join support groups that provide both information and understanding. These groups often support other family members, too, such as siblings and grandparents.

To find parent support groups in your area, contact:

• The Arc
• National Association for Down Syndrome
• National Down Syndrome Society
• National Down Syndrome Congress
• Easter Seals

Where can I find support? I feel as if I am the only one to have a child in this situation.

• Many other parents have children with special needs. Contact your local Easter Seals chapter, where you will find advice, other families, and support. Also, your local chapter of United Cerebral Palsy should be helpful.

You can also try online support groups:

• CPFamilySupportNetwork.org
• CPFamilyNetwork.org
• Daily Strength Cerebral Palsy Support Group
• Living with Cerebral Palsy

My daughter's says that the celiac diet deprives her of everything she enjoys eating and is very angry at me for enforcing it. How should I handle this?

Anger is a frequent reaction to having to give up favorite foods. Eventually your daughter will come to terms with this loss, but it may be a difficult transition. Many children and adults go through a grief reaction. Try to empathize with the sadness, experiment with her favorite foods using substitutes for gluten, and calmly explain to your child about the harm gluten does to her body. Most kids gradually begin to enjoy the food that they can eat. You and your daughter might both benefit from joining a support group. The National Foundation for Celiac Awareness (NFCA) runs Raising Our Celiac Kids (R.O.C.K.), free support groups for parents, families and friends of kids with celiac disease. For your daughter, check to see if there is a celiac support group in your area.

My child has been on the gluten-free diet for years and now has no symptoms. How can I convince him that he must stick to the diet?

This is a difficult situation, especially since your child probably wants to be just like the other kids. Remind him that before he was on the diet he had certain symptoms and was very uncomfortable. Explain that even though he is symptom free now, the disease is still there and at the first appearance of gluten, the symptoms will return. Perhaps connecting him with other children in the same situation will help. Check to see if there is a celiac support group in your area in which he can participate.

My daughter had finally adjusted to eating the recipes I adapted for her, but then her friend came over, tasted the food, and said it was gross. Now my daughter is depressed and refuses to eat the food. What should I do?

That's tough, and happens frequently to kids with celiac disease. You can empathize with her that it isn't fair, that life isn't fair and that we have to make the best of things. You can also suggest that she join a support group, as it sounds as if she would benefit from being in touch with other kids in her situation. You, too, could probably benefit from a support group for other parents dealing with these issues, such as R.O.C.K. (Raising Our Celiac Kids).

My child is having such a hard time with the food restrictions. She feels she is the only one in the world who is so limited in what she can eat. How can I find others in her situation for her to talk to?

Many people with celiac disease and their parents find support groups very helpful as a way of finding:

• The perspective of others in the same situation
• Tips on how to deal with a difficult situation
• Advice on how to adapt recipes to make them taste better.

I need support for the unique stresses I face as the parent of a child with celiac disease. Are there support groups for me?

Yes, and joining a group should be very helpful. Raising Our Celiac Kids is a support group for people just like you.

How can I find other parents in my situation?

Joining one or more of the following support groups for parents of kids with FXS should be helpful.

• The National Fragile X Foundation
• Fragile x Research Foundation
• Daily Strength Fragile X Syndrome Support Group
• Fragile X Syndrome Online Support Group

Here are some things you can do:

• Act as low key as possible about the seizures. Let your child know that the seizures are a medical condition due to activity in her brain and aren't anything to be ashamed of.
• Be aware that children with seizures are at increased risk of depression, low self-esteem and anger. Consider getting counseling for your child if you believe he or she appears less interested in friends, school or normal activities; or exhibits excessive anger, poor self-esteem or lack of self-control. Other more traditional symptoms of depression -- changes in sleep or eating habits -- may not indicate depression in kids with epilepsy as extra sleep is important to forestall seizures and the medications may make your child more hungry.
• Educate your child about epilepsy. The video "Take Charge of the Facts," in which kids with epilepsy and their doctor discuss how to handle seizures, may be helpful.
• Ask your healthcare provider or your local epilepsy organizations if there are camps or support groups for children your child's age. Meeting other children with epilepsy can help your child feel less different and alone.
• The Epilepsy Foundation of America has an online forum where children can be in touch with other children with epilepsy, share concerns and offer support. Knowing they are not alone can be very helpful.
• Focus on your child's strengths. Try not to make the epilepsy the main topic of your interactions with your child. Do what you can to help your child build on her strengths -- by taking a class on that topic or participating in a sport in which she excels.
• Parents of children whose epilepsy is controlled by medication have an easier time than those whose condition is not. Children whose epilepsy is controlled can lead relatively ordinary lives, though they will require some extra monitoring. However, children with uncontrolled epilepsy need constant monitoring. Their epilepsy may interfere with their participation in ordinary activities of life as well as with learning and socializing. Other children may be reluctant to get together with them due to fear of having to witness a seizure. Children in this group would especially benefit from a support group with other children in similar situations, as would their parents. Contact your local Epilepsy Foundation for more information.

I feel like an inadequate parent because I didn't recognize my child was having seizures, and then when I did finally recognize it, I didn't know how to best handle them.

Keep these points in mind:

• Many forms of epilepsy are difficult to detect and treatment may be a question of trial and error, with side effects and reduction of seizure activity balanced against each other.
• Make sure you have a doctor who is attuned to psychological issues that kids your child's age have, so she will be sensitive to your child's needs.
• Try to keep a detailed record of exactly what happens during your child's seizures, how long they last, and how your child feels afterwards. Also write down what your child was doing when the seizure occurred.
• Try to remember if your child had any head trauma that could have precipitated the seizures, and include that information in your written records.
• Consider joining a support group for other parents in your situation, many of whom probably have similar feelings. Check your local hospital or branch of the Epilepsy Foundation to see if there is a live support group in your area.

Once my child developed epilepsy she went from being a straight-A student in honors classes to a B student in standard classes and now feels she is "dumb." Is there anything I can do?

Unfortunately, some of the seizure medications interfere with brain activity and leave children slow at processing information. Remind your daughter that they are smart but that the medication has this side effect. Speak to the doctor to see if another medication could be tried that might minimize this side effect. Suggest that she join a support group, either in-person or online.

My daughter's epilepsy medication led to a weight gain of 30 pounds. This exacerbated her already low self-esteem as a result of the epilepsy. How can I help?

Any child would be upset by a significant physical change.

• Speak to your child's physician about the consequences of this medication and see if it is possible to substitute another one. Make sure your doctor takes your child's feelings seriously.
• Suggest that your child join a support group, either in-person or online.
• Empathize.

My teenage child feels like "damaged goods" as a result of the epilepsy. I fear this will prevent her from developing meaningful relationships. Is there anything I can do about it?

Self-esteem is a serious problem for almost all people with epilepsy. Treat your child as worthy of your love and respect. In addition, you can suggest that your child see a counselor and participate in an online forum or in a support group sponsored by a local Epilepsy Foundation or hospital.

My daughter is going to college and I wonder about the pros and cons of requesting special accommodations due to the epilepsy?

On the pro side, since the medication can slow brain function down, requesting extra time for tests and papers may make sense. On the other hand, if your child doesn't want others to know about the epilepsy, other students may become aware of the accommodation and wonder about it. Ultimately, your daughter will have to weigh the pros and cons and decide what is right. Having the support of others in her situation may be helpful, and she may want to join a support group sponsored by the local Epilepsy Foundation or participate in an online forum for young adults with epilepsy.

How can I find others in my situation?

Consider joining a support group for parents, many of whom probably have similar feelings. Check your local hospital or branch of the Epilepsy Foundation to see if there is a live support group in your area.

Are there support groups for other parents of children on the autism spectrum?

Autism is all around you. Two of the organizations offering support, information and connection to others in your situation include:

• Autism Speaks
  
• Autism Society of America

Other options include attending conferences and lectures and joining the local special education political action committee. This way you can meet and befriend other parents who have children with autism, get together, and form your own support group.