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Moderator: Thank you for joining the Parenting Today program. Today's guest speaker is Dr. Charlotte E. Thompson, author of Raising a Handicapped Child. This discussion will begin at 9am Pacific / Noon Eastern. If you would like to ask author Dr. Thompson a question anytime throughout the discussion, please type in /ask then skip a space type in your questions then hit the return key.

Welcome to WebMD's Live Program Parenting Today. Today's guest speaker is Dr. Charlotte E. Thompson, author of Raising a Handicapped Child. Thank you for joining us and welcome, Dr. Thompson. Can you please begin today's discussion by us a little bit about your background and area of expertise?

Dr. Thompson: Where do I start ... let me say first that I am a mother of 2 wonderful kids and a grandmother. That's the most important thing in my life. I am a graduate of Stanford University and Stanford Medical School and I have my boards in pediatrics but in addition to that I 've had extensive training in neuromuscular diseases in London England, Newcastle Eng, USC Medical School and I've directed 6 programs for neuromuscular and disabled kids. I've also been in private practice in San Diego for 15 years. I would like to mention there's not only the raising a handicapped child book, which has been out for 12 years out in a brand new form and then my newest book is Raising a Child with a Neuromuscular Disorder.

Moderator: Thank you. Your book, Raising a Handicapped Child is a wonderful and helpful guide for parents of the physically disabled. Why did you write this book and what has been the response from parents?

Dr. Thompson: Well, the response has been wonderful over the past 12 years, which is why I redid it, and, why did I write it? I wrote it because there wasn't a book for parents who are raising kids with disabilities other than very medical books, and this is a book ... in the way I talk to parents and it's in a language that people can understand, rather than lots of medical jargon which certainly isn't something parents want. 

Moderator: What do you think is the hardest part of being the parent of a child with a disability?

Dr. Thompson: Probably the hardest part is the emotional pain of knowing that your child will never ... or probably never be able to do the things that you had dreamed of when that child was born. And just the pain of watching them suffer with surgery, braces ... the surgeries are awful to have to sit through ... and just knowing that that child's life is going to be very different and perhaps very difficult. The other problems are the financial and physical burden. There's extra financial burden and extra physical burden just in the care, and having to be there 24 hours a day in charge, and fighting the schools and the agencies and often the doctors to get adequate care for your child. I can go on and on .. those are the main things.

Moderator: How does a parent deal with the guilt of being responsible for having a child with a disability? Even it's not their fault.

Dr. Thompson: It's very difficult and I think that some times you have to get some therapy or some counseling, because all of us as parents feel guilt no matter what. I mean, we think if something happens, did we do something wrong, or as mothers, was it something that happened during our pregnancy. You just have to work through the guilt, and you often have to get some counseling to help with it ... write about it, keep a journal, get in touch with it and get rid of it.

Moderator: How can parents find the energy and courage to do everything that they have to do?

Dr. Thompson: The most important thing is for parents to take care of themselves, number 1. And that's not being selfish, that's saying I have to take care of myself to be able to take care of my kids, my mate, my sometimes elderly parents, and do every thing I have to do, so that means an adequate diet, protein, exercise, and some fun in life. And I actually take a prescription blank and write on it for my parents, particularly my moms, "one hour a day, or one hour every few days for you to do something fun," so that I give them permission to take care of themselves and have some balance in life. So often, parents get totally wrapped up in the child with the disability and they have no life, and they must have a life. Then they can do what they need to do.

Moderator: How do you find a doctor who has the skill, knowledge, and compassion to care for your child?

Dr. Thompson: Well, first let me say that it's getting harder and harder with the HMOs and the insurance constraints. So, number 1, I would talk to a lot of other parents, because parents know who has the most compassion and will spend the time. They don't necessarily know who has the expertise or the training, but your own family doctor, pediatrician, relative who's a physician, or a friend can do some investigating for you, and you must check out your doctors. Just because they're your society doctors or have a big smile, or just because they're approved by an HMO or insurance company doesn't mean they have the expertise you need for your child, so be ruthless about this and check out the doctors.

Moderator: Is there good support through non-profit agencies, as well as the government?

Dr. Thompson: The government ... it depends and it also depends on the nonprofits. Some of the nonprofits are very good, some of them are more interested in what they can put in their own pockets, I'm afraid. Some of the program are excellent. In general, United Cerebral Palsy I've been impressed with their programs... at least in my areas... in the bay area. Some of the clinics that are run by a particular nonprofit are very variable and you must once again check out programs, particularly when medical care is involved. Easter Seals generally does a very good job with their therapies and their infant child programs, but it's variable across the United States. And, of course, Canada has different problems. But talk to parents, talk to social workers. But physicians are not usually tuned in to the nonprofits as to quality unless they work with them.

Moderator: Are there local support groups for parents and families in local communities?

Dr. Thompson: Oh, yes.  I have been so impressed getting on the Internet, looking at the support groups. There is just a wealth for people or parents, and if a parent is not Internet savvy, get somebody to go into the Internet, or go to the public library, type in the specific disorder for what you want support, and you will be amazed at what is out there. Parents do a wonderful job and they have to, because the medical care is just not there to support parents in most instances.

Moderator: How can mothers and fathers help each other best, and does a situation like this add extra stress on the marriage?

Dr. Thompson: Oh, yes. Parents have a terrible time often with the emotional pain, the guilt. Mothers have to be careful that they don't exclude the fathers, their partners, from the care, because marriages suffer terribly. Generally, the fathers -- with a severe disability -- don't stay. Some reports show even 85% of moms are left without a partner,  but then often find a loving male partner to step and help, but marriages just really have terrible terrible problems lasting when there's a disabled child. So you have to make a real effort as a mother and father to have a weekly date, go out, get a babysitter, get a grandma, get somebody, and go out and have some fun. Talk, but not about the child. Or put aside ten minutes at the beginning of the time together to take care of that business, and then get back to your old relationship. Just really work on it, or otherwise it will be gone with the wind.

Absolutely, but it's worse with the problems with a child with a disability.

Moderator: How can family and friends help the most?

Dr. Thompson: Mainly just be there and offer help, but don't intrude. This is particularly hard for grandparents. Be supportive, ask what you can do, offer time, money, whatever,  but don't try to take control or be negative about the problem.. Some grandparents particularly cannot handle a child with a disability and they walk away. You have to realize the kids are wonderful and, if there's a disability, well, there still a very special human being under or behind the disability.

Moderator: Coping is emphasized a lot in your book. In your first chapter, you discuss the stages you go through. Can you touch on that?

Dr. Thompson: Some parents never get beyond one stage. They stay at the kind of numbness and denial stage, and hurt the child because the child tries to be perfectly normal when maybe they can't walk properly, they have a learning disability. Some parents, as we talked about, carry so much guilt that that gets in that way. What you hope is that you can work through the pain, the denial, the rejection, and come to a feeling of acceptance that, yes, this is not what you had anticipated, but there's a wonderful special human being and you're going to make it work.

Moderator: What can a parent say to intrusive family and friends that mean well?

Dr. Thompson: It of course depends on the individual relationships, but I think a parent has to have enough courage -- which you can find if you need it, to either invite the relative in for a cup of coffee, cup of tea, go meet them, and just delicately talk about the problem, and it's very difficult. I had a very difficult mother-in-law and if I'd had to do ... well actually I did ... she insisted one of my kids needed a tonsillectomy, and she was very controlling and I just had to keep talking. But I could have done it a little more wisely with hindsight. But you have to speak up speak from your heart and you can do that as a parent.

Moderator: How do you know what you can expect of your disabled child?

Dr. Thompson: You need some guidance, but you in your own heart as a parent are the one that knows your child the best, so don't ever let a professional put you down, or put the child down. So go by your gut feelings but get some outside professional advice. Later on, some educational testing, but remember that you might have and probably will have to change your goals periodically.

Moderator: Is it important to have your disabled child interact with normal children?

Dr. Thompson: Yes. It's most important that kids have good socialization with all kinds of individuals... children who are disabled, non-disabled, adults, whatever ... all kinds of races, colors, minorities. We are a multicultural and multi-disabled society and we must embrace all of that. I would add that isolation is one of the cruelest things you can do to a child -- or an adult -- but particularly a child.

Moderator: How do you discipline a child with a disability?

Dr. Thompson: You discipline them just like any other child. Treat them as normally as possible, set limits, let them know what is expected, and then punish according -- or discipline according to what the rules are.

Moderator: How do you help a disabled child develop a good feeling about himself or herself?

Dr. Thompson: Just like any child, you find their special abilities and you praise them and you help them develop them. And the disabled child should be no different from a kid without disabilities. You figure out what works for them and help them along the way, and they become very competent individuals if you allow them to do things for themselves and develop and independent and increasingly good skills.

Moderator: How do you go about finding a school that's best for your child?

Dr. Thompson: Schools these days are terrible problems. You have to do lots of checking the programs, the teachers, their qualifications, just the feeling in the school and you may need a special education attorney. We have one in our center for handicapped in kids in San Francisco who helps our parents find the most appropriate program. And she's marvelous, Sarah Clark. There are people like Sarah all over the United States and you often too can find an advocate in some special community program to help you figure out what's the most appropriate program. I would add that other parents can be great help if they know how to navigate the educational system.

Moderator: Are most schools equipped to handle the problems of children with disabilities?

Dr. Thompson: NO. It takes a fight often. For example, in Berkeley which is one of the most accessible areas for adults with disabilities, parents had to join together and file a lawsuit to get the schools to do even minimal things for kids. Different school districts are better, some are abominable. And you need to do a lot of research.

Moderator: Let's talk about adolescence -- in childhood you stress maintaining normalcy. Is this important in later years as well?

Dr. Thompson: Once again, you have to find other strengths and other things that the kids love and excel in, because they may not be able to drive, or play sports, or do all the normal teenage things, so you have to find a circle of friends of them and help them to find them, who can do whatever it is they can do, and there's always something that a child can do and do well.

Moderator: Should parents still talk to their kids about sex... even if they think since they are disabled, this may not pertain to them?

Dr. Thompson: Oh, yes, even more perhaps, because these kids may not have an opportunity to talk to other kids, there may not be adequate sex education programs, and all kids develop and have sexual feelings which, if they aren't allowed to be expressed in normal ways, are going to cause terrible problems. And they need even -- the kids may need special help in the area of sexual education by a trained counselor, and there are special sex education counselors for kids with disabilities.

Moderator: How do you help a disabled child become independent?

Dr. Thompson: It goes back to finding what they can do and insisting they do it. An example of that would be, I had a ten year old in my office a few weeks ago, it was time for him to get dressed and put on his braces, and all of a sudden mother was down on the floor putting on one brace and shoe and sock and father was down on the floor putting on the other brace and shoe and sock, and I stopped them and said, wait a second, what are you doing? They had infantilized him to the point where he had no independent skills. So insist and allow kids to develop increasingly more skills as they get older.

Moderator: Do the siblings of disabled kids have any extra special needs or problems?

Dr. Thompson: Yes. They're often desperate for attention, and parents must recognize that they need all the attention you can give them, and that they may feel some guilt about being normal, or that they thought something they [did] may have caused whatever the problem was, they may have guilt. This is one of the biggest problems, you need 36 hours for each day.

Moderator: How do parents keep up on new developments and research?

Dr. Thompson: Well, it should be through your physician or professionals. Unfortunately, parents are having to get on the Internet and research things themselves. Be careful though. There is a lot of misinformation on the Internet put there by well-meaning lay people, or physicians who don't know what they're talking about. And even books have a great deal of misinformation, some of them even published by physicians or written by physicians.

Moderator: In today's society technology is opening many new opportunities... is this helping the handicapped child?

Dr. Thompson: Yes. It's wonderful what the accessible technology centers across the United States can do to help a child and then, the touch talkers for kids who are nonverbal ... there's just a wealth of help. But you need to have a professional trained in that area to make the decisions about what's appropriate or the equipment will sit in the closet.

Moderator: You stress fun over and over in your book. Why is it so important for families to include having fun in their daily lives?

Dr. Thompson: Well, the quality of life without fun is not good. And fun makes it all possible. You put your troubles aside for a while and just live in the moment, and suddenly you have new energy, new insights and new coping abilities. You have to have some fun along the way. And kids must have fun. That's what childhood should be about.

Moderator: Is it important to maintain spirituality in raising a handicapped child?

Dr. Thompson: Yes. I think faith is a very important thing no matter what your religious leaning is, but you must have faith first in your ability to cope, and faith that there will be help along the way. And the parents who seem to get through this journey the best are those with really deep spiritual roots and somehow, they can find a way to cope and help others cope.

Moderator: We have covered so much... is there anything else you would like to talk about that we haven't yet hit on?

Dr. Thompson: I think the most important thing is what I kept stressing, that each child is a wonderful special unique human being, and if you can just look beyond whatever the disability is, and see that very precious person, and love that child for that person, not ... put the disabilities aside ... you will feel very blessed that that child entered your life.

Moderator: Socially, having a handicapped child is such a stigma; how do you deal with it?

Dr. Thompson: You find a group of friends and often these have to be new friends, who are comfortable and big enough people that they see the child and not the disability. You have to search, often, to find this group of friends, but any child has to search to find kids that share their same interests, abilities, or disabilities.

Moderator: Unfortunately our time is up. I would like to thank Dr. Charlotte Thompson for being our guest speaker this morning. This discussion has been very informative and useful. Dr. Thompson's book, again, is called Raising a Handicapped Child and is available in a number of book stores. Dr. Thompson, it's been a pleasure, please come back again. Thank you, everyone, and have a nice day.

Dr. Thompson: Add the book is available online through amazon.com and Borders, and others.