Special Needs and Depression

I am depressed and devastated. What will help me adjust to being a parent of a child with special needs?

It is normal to go through a painful period of adjustment upon learning that your child has a special need. Here are some guidelines that may be helpful:

• Grieve the loss of the child you expected or dreamed about and begin to develop new dreams for the child you have.
• Recognize your child's strengths, as well as his or her limitations.
• Educate yourself about your child's condition.
• Focus on helping your child to be "the best he can be." Avoid comparing your child with others.
• Seek help with emotional issues, find a caring health care provider, and get advice on creating an educational program that meets your child's needs.
• In addition to health care professionals and various therapists, other parents in your situation may be wonderful resources. They can provide one-on-one support, participate in support groups, and share written accounts of their personal stories and coping strategies.

It is important to remember that FXS itself is the underlying cause of the depression that your child has. Standard treatment for depression (or for bipolar disorder, which some with FXS have) doesn't work as well in FXS patients as it otherwise would, because the treatment doesn't address the underlying genetic condition.

Kids with Down syndrome do experience a high rate of depression, possibly because of:

• Social problems
• The experience of not fitting in
• The loss of a family member with whom they had been close.

What social challenges do kids with Down syndrome face?

Children with Down syndrome are usually very friendly. However:

• They can feel socially isolated due to their differences.
• Most are socially immature and find it difficult to keep up with other children their age physically, emotionally and cognitively.
• Relationships with kids who don't have Down syndrome are often lopsided, not equal, with kids with Down syndrome more invested in them than the other kids.

Some find that when their kids meet other kids with Down syndrome who are at their level of the spectrum, this enables equal friendships.

How aware are kids with Down syndrome of their differences, and how does this awareness affect them?

Certainly kids in the more advanced half of the spectrum are aware of their differences. Awareness can lead to insecurity:

• One child who was mainstreamed would only answer a question if she were sure she was correct.
• That child also refused to read aloud in class after once having a difficult time with it.
• Similarly, that child refuses to participate in timed running tests in gym as she is aware that she is much slower than the other children.

How can I give my other children what they need while also attending to my child with Down syndrome?

Here are some tips:

• Give your other children permission to express all of their feelings, positive and negative, about your family's situation. Then acknowledge all the feelings, good and bad, as a way to give your child permission to feel this way.
• Don't give your other children too much responsibility for their siblings with Down syndrome. They can be helpful, but don't overburden them.
• Pay attention to all of your children's moods. If you notice any changes, specifically that they are anxious or depressed, be sure to get that child help as quickly as possible.
• Pay attention to what is important to each of your children, and try to spend individual time with each one regularly.

My child feels different from other children due to her epilepsy.  What can I do to help?

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 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 -- sleeping or eating more or less than usual -- are less reliable indicators of depression in kids with epilepsy as extra sleep is important to forestall seizures, and the medication may make your child both more sleepy and more hungry.
• Educate your child about epilepsy. There's a helpful video, "Take Charge of the Facts," in which kids with epilepsy and their doctor discuss what it is and how to handle seizures.
• 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 center of your interactions with your child. Do what you can to help your child build on his or her strengths -- by taking a class on that topic or participating in a sport in which he or she excels.
• Children whose epilepsy is controlled by medication have an easier time than those whose condition is not. Those 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. Children in this category would specially benefit from a support group with other children in a similar situation, as would their parents. Contact your local Epilepsy Foundation for more information.

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 about this?

Unfortunately, some of the seizure medications interfere with brain activity and leave children slow at processing information. Remind your child that he or she is 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 on line.

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. Also, suggest that she join a support group, either in person or online.

My child has very brief (absence) seizures in which she loses awareness, but it is difficult to tell that she is having one. How do I explain this to her teachers and friends, who may think she is just "out of it" or stupid?

One possibility is to ask your child's teacher to explain that kind of seizure to the class with or without disclosing who in the class has that kind of epilepsy, depending on how willing your child is to disclose it. Or the teacher could invite a team from your local Epilepsy Foundation to come in to explain what epilepsy is. Another possibility is to ask the teacher to show the video "Take Charge of the Facts," in which kids with epilepsy and their doctors discuss the different types of epilepsy and what to do if you witness a seizure. This type of education can help prevent teasing, which can be very destructive to a child's self-esteem.

My teenager feels that her life is ruined because she can't drive. What can I do to help?

Most states require that someone be seizure free for between three months to a year before driving. It would be unsafe for your child and others if that were not the case. But of course your child may resent the limitation. Suggest that she join a support group, either in person or on line. Beyond that, all you can do is empathize and make sure that you have tried every treatment possible to control the seizures. Most, but not all, children with epilepsy are able to control their seizures with medication and ultimately are able to drive.

My teenage child feels like "damaged goods" as a result of the epilepsy and is reluctant to tell any friends about it. 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 this online forum or in a support group sponsored by a local Epilepsy Foundation or hospital.

My daughter's favorite foods all contain gluten. She 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. All you can do is empathize with the sadness, experiment with her favorite foods using substitutes for gluten, and calmly discuss the harm gluten does to her body. Most kids gradually begin to enjoy the food substitutions that they can eat. You might benefit from joining a support group for parents of celiacs. Check the National Foundation for Celiac Awareness (NFCA) which runs Raising Our Celiac Kids (R.O.C.K.), free support groups for parents, families and friends of kids with celiac disease.

My child has been on the gluten-free diet for years and feels perfectly healthy. He can't understand that he still has a problem, since he now has no symptoms. How can I convince him that he must stick to the diet?

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.

What do I do about school birthday celebrations? It will be a constant problem and source of pain for my child.

It is true that not being able to have birthday snacks like the other children will be difficult for your child. Here are some things you can do that may help.

• Try to have a conversation with your child's teacher or teachers before school begins, and ask her to alert you in advance when a child will be bring birthday snacks to school. That way, you can send an alternative snack with your child that will mitigate the deprivation.
• If the teacher feels this will be too onerous, perhaps you can give the teacher bags of safe chips to keep for your child to eat when a birthday celebration occurs.
• With your child's permission, offer to educate the students about celiac disease so that the other kids may be more sensitive to the issues your child faces. Explaining that just a tiny bit of gluten actually damages your child's intestine may help them understand why having a birthday cupcake "just this once" is not possible.

Here are some things that may help:

• Acknowledge that your situation is a frustrating one and that anyone could become impatient.
• Focus on your child and on how achieving small goals will help your child become more self-reliant.
• Build some time for yourself into your daily schedule. Get respite care, either from a family member, friend, volunteer or paid provider.
• Join a support group where you will encounter other parents in the same situation.
• If you try this and still find yourself frustrated and impatient, speak to a counselor.

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, which will offer you advice, contact with other families, and support. Also, your local chapter of United Cerebral Palsy should be helpful. There are also various online support groups:

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

How can I find support groups for people in my situation?

Autism is all around you. A few of the many organizations offering support, information and connection to others in your situation, in addition to local social service organizations, include:

Autism Speaks
Autism Society of America
Autismlink

Other options are to attend conferences and lectures, and to join 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 small and more intimate support group.

How can I help my daughter get through the painful middle school years, made even more painful by her Asperger syndrome (AS)?

A woman with AS offers this advice:

• Encourage her to develop her strengths and interests.
• Have her participate in clubs related to her outside interests. If no clubs exist, suggest that she start one or join a group outside of school.
• Perhaps she can befriend a teacher at school, such as the teacher of a subject she particularly enjoys, who might bolster her self-esteem.
• If there are trouble spots, such as the lunch room, find ways around them.
• Join a support group

My son with AS also has auditory processing disorders, which makes joining in conversations really difficult. How should he handle this?

He could try explaining why he doesn't join in the conversation, saying something like, "If I seem quiet it's not that I am not interested. It's because I have auditory processing problems and can't comprehend what I am hearing until I have time to think about it when I am alone." Hopefully that will help and the others will understand his behavior better.

My teenage son has AS and is miserable over how different he is from the others in his school. He believes he will always be a "loser." How can I help him?

One way to help is to obtain therapy in socialization for your child. This sort of therapy will help your child to pick up social cues and feel less like a loser. He may always be somewhat different, but by learning how to decode some social signals, he may find socializing to be less painful than it has been.

How can I enhance the quality of my child's life so that he won't be so isolated and depressed?

Almost any therapy for ASD that works for your child will help your child become less isolated and, hopefully, less depressed. Try to intervene as soon and as intensively as possible in order to achieve the best results.