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Thank you for the info. That is funny about the ice, I'll have to tell him about that. We don't know what kind of brace he will wear. We don't even have an appointment yet to have him fitted for one because we are waiting on an authorization from the insurance company. They will not give us an appointment without this authorization. We tried to rush this but the insurance company does not see this as an emergency so we have to wait. My son is worried that his curve is getting worse while we wait. It changed enough in three months that when the doctor walked in and saw his X-rays, he said "Oh my gosh." My son said "Okay, now I'm really scared" and I could see he was struggling to keep from crying, but he managed to do it. The doctor was very blunt and told him if he didn't wear the brace he would have to have surgery and they would have to implant metal rods in his back to keep his spine straight. I think it is a very normal reaction to have some anxiety about this. I don't know what anyone, including a therapist, could say to him that would make this any better. I remember when I was his age thinking that wearing braces on my teeth and a few blemishes were hard to deal with, but I had lots of company. I wasn't the only one dealing with those issues.

I tried to find online support groups but too many people were describing the braces as torture devices. He has one cousin on his dad's side of the family who wore a scoliosis brace during her teen years but she still had back pain and ended up having back surgery as an adult. I don't know if I want her to talk to my son or not. He is afraid of surgery because he knows there can be complications with any kind of surgery. He is reminded of it every day when he sees his grandmother who had routine surgery and came out with brain damage and severe memory loss and requiring 24 hour care. I think we need to find something fun to do to take our minds off of all of this. He and I both manage difficult things better if we allow ourselves some kind of reward or something to look forward to, but my son will have to wear a brace until he stops growing and he is only 11 now. Maybe we will let him choose a new game when he gets through the first month of wearing the brace.

And I guess I will have to forget having him work on getting dressed and ready faster.

Most likely it is not one or the other - they are intimately intertwined.

The point of therapy would be to equip him with tools and support to learn to recognize that relationship and be in the best position he can to take control of it.

Thanks again for the information. None of the doctors my son went to noticed the leg length difference, not even the orthopedist, but the orthotist did, thankfully.

I like the orthotist. He used to be a mechanical engineer and he was very meticulous about measuring my son for the Boston brace. He told my son that it would be very uncomfortable but he was not in the business of torturing people although it might seem that way at first. He also told my son that he could tell he was "intellectually up there" and could understand why he had to wear the brace. He was very honest about how difficult it would be and that he would have to get used to things like sweating a lot. He also told him that there was no guarantee that bracing would be 100% successful and that he might still need surgery in the future but that his chances for avoiding surgery were much better if he wears it the way he is supposed to.

My son is on his third day of wearing the hard plastic brace and he is wearing it for about three hours at a time now. He says it is almost unbearable, especially after the first hour or so. It is more painful than either of us imagined it would be and it is harder for my son to breathe, so much so that he says it makes it hard to cry although he feels like he wants to. He even has a hard time sitting up straight in the brace because of tight hamstrings, but he is willing to go through pain now in the hope that his adult life will be better.

The orthopedist told us that he needs to wear it whenever he is out of bed, even for the dancing that goes along with the musical theater class. If he can't wear it then, he will need to quit. This is the one activity that felt really good about, an activity that he has done since he age four and the only place where he felt he fit in. He already quit Boy Scouts because they seem very focused on physical abilities and camping and 10-mile hikes and he wants to spend more time on activities that he can do with his abilities and not constantly be reminded of his disabilities.

I hope he gets used to the brace soon. It is hard to see him in pain and I know it makes it harder for him to learn.

My husband and I keep telling our son that "we will get through this" and my son said "but the onus is on me." So the brace now has a name--Onus.

I forgot to mention that the day he first saw the brace was the final day of rehearsal and he missed all but the last hour of the rehearsal. He had to learn a new dance that had just been choreographed and the others had been practicing it for hours. This kind of thing is difficult for someone with motor dyspraxia but he was somehow able to focus enough to get through it even though he had just found out that his life was going to become even more difficult than he had imagined. He also made it through the New Years Even performance in front of a crowd of strangers by faking the parts of the dance he couldn't remember as he danced on the back row. He made it look like he knew what he was doing. He loves doing these shows, but I don't know how he will do it next year in a brace that makes it impossible for him to bend down and touch his toes. I think the show at the state fair outside in the heat would also be very difficult even if he didn't dance because the brace makes him uncomfortably hot even when everyone else around him is cold.

He is only 11 years old and his only friends are in this group. He had worked hard on improving his coordination and the dance teacher/new musical theater director said she had noticed recently that he was better in everything...timing, balance, learning the dances, everything. He will not be able to do some of the things I was having him do at home. How are we supposed to continue to work on the motor dyspraxia, muscle weakness, fatigue and endurance issues now?

What about academics? Will my verbally gifted child continue to learn so easily on his own? When he is in pain from wearing the brace he doesn't even want me to read to him. I am having him do math before he wears the brace so he can concentrate on that but he will at some point have to wear the brace all day. How would I even find an OT or PT experienced in helping a child with all of these difficulties. Even if I could find someone, how can I afford the co-pays and continue to buy materials for homeschooling? We have to live within our means and not take on any new debt because my husband will retire in three years.

What about college? So many people, including the first grade teacher who told me I would have to homeschool my son, said he would be able to get academic scholarships. I don't think any of these people realize that he is twice exceptional and what that means. I worry that dysgraphia and fatigue issues will make it more difficult for him when he takes the ACT or SAT.

My son will need a college degree so he can get a good job in the future. Because of the physical disabilities he will not be able to do a job requiring a lot of physical labor.

hi Lori -
My heart goes out to you and your family. Love the 'onus' joke.

I have experienced that life isn't fair - not by a long shot! But it could always be worse, and that is how I keep my perspective when the going gets tough. You can help your son by helping him see the 'unfairness' as part and parcel of life. The more you accept this the easier it will be for him.

The one thing you have control over is your perspective, and the more you 'tune' your mind to all the things you have to be grateful about, the easier that will be. And it is really hard - the more sensitive one is the harder it is - but there are those moments of exquisit joy, too.

In a way, I hope that you son's wearing the brace will be somewhat postive in that his disability has always been so hidden - now with the brace, people might be more understanding. As in 'Oh, I get it, he has physical handicaps, lets modify the scouting program so we can include him.'

I hope that your son can continue his musical theatre activity, even if everyone has to accept some modifications.

Actually I'm wondering if he could pick up an service related activity. For me, there is no better mood enhancer than doing something for someone who needs it.

I'm so sorry that so many 'real life' things that are so sad have happened lately. I hope that you and he are feeling more secure soon.

As far as academics go, my guess is that you are getting close to the time where you would have to transition from being a teacher to being a driver/organizer. I think a few well chosen activities are better than any particular agenda. I think it's ok for him to follow his motivations for a while and double back to the 'have to's later, as long as he is beyond what his agemates are doing at school anyway.

I can picture an indepth study of comparitive religion right about now. I don't remember much about the book 'Why bad things happen to good people' but I know it brought lots of comfort to many people. A friend of mine is exploring Buddism right now, and told me that 'suffering' is actually the normal life condition. Not my cup of tea, but he gets great relief from this perspective.

((hugs and pats))
Grinity

Take a deep breathe. We cannot worry about years in the future and still live in the moment. All of this is alot for a child to handle as well as any adult. i agree with some earlier postings about therepy or finding someone to talk too. Both for him and you. We all need a place to vent and release where we are not trying to protect the listener. If he can't continue with this theater group find another. There are always modifications that creative minds can come up with. Instead of he cant't do this motion what can he still do and do his best at. He was improving before and will continue to improve. Have faith in him and yourself to get through and find solutions. Communicate with the other adults in his sphere and find out what they think. The theater issues may be a non issue for the director or simply a challange to work around.

Finding a way to deal with "Onus" may be a journal or jokes, drawings, some form of physical expression. let your son decide. He is an entertainer/performer. Use these feelings as a source of comedy.

Thank you very much for your reply. He knows he is lucky that the scoliosis was caught early enough that if he wears that brace, the curve will not get any worse and by the time he is in college there is a good chance that no one will be able to tell he had it. The brace is worn underneath his clothing but if he has to change costumes in acting class, the middle school age girls will see him in it. Although he won't admit it and he swears that he doesn't care what other people think, I think this bothers him.

He doesn't really complain about life not being fair that much, but he told me he was thinking about probability yesterday. He wonders what the probability was that he would be born with all of these differences, especially with no family history. We had read somewhere that about 4 in 1000 children have to wear a scoliosis brace. When he was a baby and the doctor told us he had hypotonia, I read that about 1 in 1000 have hypotonia. My son knows that when you add motor dyspraxia/dysgraphia and giftedness to the mix, it makes it highly unlikely that he will ever meet someone like him. There are no support boards that we can find for this combination of differences, so that adds to the feeling of isolation.

I pointed out to my son that he has become a master of compensation for some of his issues. He and I watched videos of his last two performances. There were absolutely no problems with timing with his solos or dances, but he knows the choreographer/director does not have him do the really fast dances that some of the other kids are able to do and that is okay with him. I think he could still might be able to do most of what she had him doing before he started wearing the brace if the pain will just go away. It is painful for most kids without sensory issues and it takes the average kid about a month of wearing it a little more each day before they are able to tolerate wearing it all day. He knows he could be trying to deal with this while going to school. Since we homeschool, we at least have the flexibility to work around the times when he is in the brace, but after a month he will be in it full time.

He just can't concentrate when he hurts. I don't want him to fall behind in math. The writing part of math because of the motor dyspraxia/dysgraphia was always a problem but he has made so much progress because the Life of Fred books, with the humorous way the material is presented, have really helped him and there are not so many problems to write out that it turns him off to doing math. He is about a third of the way through Life of Fred Decimals and Percents book and he has only done one math lesson the entire week. He will read the lessons, but he says he can't handle writing math problems when he hurts or is tired from hurting. Science for this year has been more about the human body than any thing else--especially muscles, skeletal system, neuroscience, etc. that he can probably relate to a little better because of his experiences. He is also doing really well in a circuitry class because he enjoys it but he hasn't had to wear the brace to class yet. I don't know what 6th graders are learning in public school. There could be holes in his knowledge, but I don't think we can worry about that right now.

When he hurts, he wants me with him. He asks me to read magazines like Popular Science and Popular Mechanics or online news stories to him while he plays a video game to distract him from the pain as much as possible, but it still hurts...and I am the one that has to tighten the straps which are located on the back of the brace. After the first hour, he says it feels like he has done a thousand sit-ups and is being forced to continue doing them. It is like watching someone in labor. Tylenol doesn't help much. This is hard. It has to get better.

We don't really have time for a service related activity although in the future that might be a good idea. We still take meals twice a week to my dad who provides 24-hour care for my mother instead of putting her in a nursing home where he knows she would be miserable. We try to visit them every day and my son and I are responsible for my mother whenever my dad has to leave the house. I don't know how my dad does it. I asked him if he ever found himself thinking a lot about the past when life was normal. He said he doesn't think about the past that much because life is easier now than it was when he was a child and he is thankful for heat and air conditioning, medical care, plenty of food, indoor plumbing, etc. His dad died when he was young and he had to work as a child to buy school supplies and clothes and to have enough to eat. He learned at a very young age to do what he had to do and get it over with. I think my son, as he has told me several times in the past when he realized his interests were different from most kids his age and felt more comfortable talking to older kids and adults, just wants to get childhood over with. I am trying to think positive but that really makes me sad.

Thank you. There really is no place to vent or get advice from someone that has been through all of the difficulties plus the giftedness that my son is dealing with, other than this message board, and that is hard. My dad listens to me, but he usually has a recent experience in taking care of my disabled mother that makes the difficulties my son and I are having seem very minor.

I do think the young choreographer/new musical theater director can work around his issues. I just have to convince my son to try.

My husband and I are thinking about getting him a Pulse Smartpen to encourage him to write and draw in a journal to record his feelings and experiences while going through the brace and puberty at the same time. He has told me so many things that were very comical and I would love for him to learn to put it on paper or the computer.

I'm sorry to read he's having a hard time with his brace. That is a huge thing to adjust to and of course it is natural for parents to wish their kids didn't have to do through this kind of stuff.

Many disorders are rare - much more rare than one in a thousand. If you set up as a precondition of feeling support that the people have to have been through the exact same things then yes, you may be stuck anxious alone. I would instead keep in mind that disabilities are not actually very rare and it is possible for people to receive support from others coping with disabilities and from those who are not. We've found therapists who understand the experience and challenges of life in a family affected by disabilities even though they were not familiar with the exact combination of disabilities.

One thing that might possibly help would be to avoid seeing everyone of these physical factors as separate and unlikely to occur to together. That may just add to a feeling of woe is me. In fact most of these are likely interrelated. Problems like handwriting problems, shortened hamstrings,sensory sensitivities, weak ankles and motor planning problems and preventing scoliosis are the exact sorts of reasons why consistent occupational and physical therapy including strengthening are encouraged for kids with hyptonia. I wonder if your son may actually feel more empowered to think of these various challenges as a part of having hypotonia instead of seeing each one as separate proof of the unfairness of the universe.

I recently heard a very good podcast about resiliency. You can listen online. http://www.whyy.org/91FM/voices.html Scroll down it is the one from 12/21. It includes interviews with families who have experienced significant medical events. The program from November on cultivating gratitude is also good. There exists quite a bit of research that learning certain thinking habits can make a significant difference in the amount of pain and overall feelings of happiness even for people affected by severe pain. There are therapies that could make a significant difference.