By Barbara Scott on Sunday, January 13, 2002 - 01:12 pm:

Hi friends-- This is my first post. My 5 1/2 year old son has been diagnosed with EDS III/hypermobility (as well as Tourette's Syndrome.) We were lucky to catch it "early" (had to change doctors, pay for PT/OT evals ourselves, etcetera). My concerns are the limitations on his recreation and athletics, as he is also an academically talented child who is tentative about sports or about other kids, in general.

We have encouraged playing soccer, in the interest of having him play more with kids and for the conditioning (he also does PT 3 times a week). Now I see the other kids getting stronger, faster, rougher--and starting to want to head the ball--and I am concerned that soon it won't be safe for my son to play. (That he can't keep up is already obvious, but doesn't seem to trouble him.)

He also plays piano, and practices frequently. I've noticed that he is increasingly using a poor posture at the piano (most notably, hyper-extending his distal IPs--the small joints at the end of his fingers) Handwriting, of course, is awkward and frustrating for him, especially because he was an early reader and writer and actually has a lot to say in writing, except that it is tiring and difficult.

Any suggestions on: 1) helping kids stay socially integrated, when they can't play sports,
2) playing piano (or typing, for that matter),
3) dealing with the frustration of writing and drawing?

Thanks so much!

By Margareth on Sunday, January 13, 2002 - 05:38 pm:

Hi Barbara,

As a 21-year-old I can vividly remember my childhood as a hypermobile kid. I recognise your son's frustrations. So I couldn't resist to post some thoughts on your 3 subjects. I would like to tell you how I felt in primaryschool and how I look back on that now. I should say that I went trough my entire childhood undiagnosed, we knew there was something wrong, but we never knew what it was untill I was 19 years old. So my experiences are an example of what happens when no action is taken.

1) Find a sport he really enjoys that doesn't harm his joints too much, like a very soft style of karate (in the style I practice, shuri ryu, we hardly even touch eachother, it is a martial ART). I very much enjoy the karate lessons I've been taking for a year now. I get my excercise, I get to meet people, I can feel good about myself as I keep getting better at it. It also helped me to get a more positive attitude towards my body even though I need a wheelchair to do karate. So maybe a safe sport is a good idea.
If you don't think any sport is a good idea perhaps an acting class or a creative writing class is. Or maybe your son has a talent for chess...
Do find something he can do together with other children, but on the other hand make sure he isn't always last of his team/class. So be sure it is something he is quite good at. Maybe it doesn't seem to trouble him he is not keeping up, but that could also be a mask, it could be he is afraid to admit his 'failure' or to lose the contact he has with his team mates. I am not saying it is, he could just be a happy positive child, but it might. I did gymnastics for quite some time in primary school. I was obviously flexible enough but I lacked strenght and controle so every single contest I took part in I came in last, by far. It was obvious. My parents saw it, everyone saw it, and everyone was amazed by the fact that I didn't see it. I kept participating in the contests, I kept smiling, I kept up appearances. I knew I was not good at it, I knew I was making a spectacle out of myself and it very much bothered me. But I never admitted it because as a perfectionist I didn't want to admit to myself or others that I couldn't do it and because I was afraid my parents would take me out of the gymnastics class and thus away from my friends there. Like I said, maybe your son really is fine with not keeping up, but maybe he is not.

Personally, at some point I really wanted to talk to children like me, who had physical problems too. I still do in fact. It doesn't replace my normal social life, it completes it.


2) Correct his posture, in a friendly and educating way. Teach him how to sit up straight and show him (or have his piano teacher show him) what is a healthy way of using your hands. Try as much as possible to keep him from developing 'hypermobile habbits'. I spend ages in physical rehab trying to get rid of those. Perhaps an occupational therapist could help him with this. About the hyper-extending DIP's: have you heard of ringsplints? I have four of them and I love them! I know one supplier has a website http://www.silverringsplint.com/ but I am sure there are others.
Hypermobility can actually be an advantage in a musician, but it is not always. Make sure the hypermobility doesn't spoil all the fun. At some point playing might cause to much discomfort. If he starts making more mistakes the more and the longer he practises, that could be a sign.
I tried playing the piano but eventually I dropped it for singing.
I wrote something on typing below.

3) Don't let the handwriting become a big issue. I mean, do not comment on his handwriting in a negative way and be sure teachers don't either. Talk to them and explain the situation. Your son is doing the best he can, that should be appreciated. All through my childhood everyone complained to me about my handwriting. A lot of the school work I handed in got no other comment than 'mind your handwriting', 'illegible, make it over', 'I am not even going to try to read this' and 'you are not making any effort'. It made me feel terrible about myself. I never got any positive feedback on the work I handed in so I figured I was stupid. It wasn't untill I was eleven and took a nationwide test (to indicate what level of highschool would be appropriate) that I learned I was academically in the top 2 percent of my country. I never even knew untill then, because no teacher had ever said much about my schoolwork except the comments on my handwriting. It turned out that that was pretty much the only thing that needed comment, but I never took it that way. I took it as if they were saying 'if you can't even do a simple thing they teach you in first grade, you must be a total idiot'. I am getting a bit carried away here but you need to understand how much of an impact my poor handwriting has had on me. Even now if somone mentions handwriting in general I get a funny feeling in my stomac.

I now write and draw on a computer as much as possible. There is a lot of software available for drawing and coloring for all ages. I have a laptop computer that is on practically all day. I take it to my classes in university and I use it at home to write papers, letters, drafts, anything.
Typing is hard for me, even when wearing my ringsplints. At home I use speech recognition software a lot (not at the moment, as my Dutch software doesn't speak English). I think a bright child like your son should be able to use software like that as early as age 7 or 8, maybe even sooner, it is not that hard, once it is properly installed and the program is used to his voice. Whenever I don't use my voice recognition, like in class, I make sure to rest my hands every few minutes, I take short notes and I type in a rather particular way. I keep all five fingers pressed together, bend them a little (like when your hand is on the mouse) and then stike the keys with the tip of my middle finger. So I use my other fingers to support the finger that is typing.


Have you visited the U.K. Hypermobility association? http://www.hypermobility.org/
They have a special 'kids & teens' section. Perhaps your son is a little young for this site, but it does explain some things at an easier level.

All the best for you and your son!
take care,

Margareth

By Sharon on Sunday, January 13, 2002 - 10:42 pm:

Barbara
Like Margareth I was undiagnosed all childhood and now at 30 am finally close to getting a diagnosis. Iwasn;t even told I was Hypermobile as a child but I know I sure was. Alll of my school reports say I was lazy and if I tried harder my writing would be better I see now that this wasn;t my fault it was my body. Infor all of your child teachers of your son's problems and that it isn't that he is lazy or not trying that it is a problem with his body (and not his ego or mind).
Secondly like was suggested try to find a sport or activity for you son that he likes, try out differnt "low or no contact" sport for a week or so , speak to the instructors and let them know the problems (they may even cut you a deal on a weeks trial of the sport. Ask you son what sports or activities he would like to try suggest things like Swimming, Tia chi (a form of martial arts that is NO contact), I know he is only 5 1/2 but he has probably seen sports on TV. Try sports for disabled people too like riding for the disabled if he loves horses, as they cater for children who are unable to do regular sports as do other sporting agencies..
SHow him different sports and look on the net etc for low impact sports/activities maybe he likes art to paint or use clay, he could join a childs art class (again make sure you tell the teachers his problems, by the way do this privately and preferably with out your son present and tell the teacher not to make a big deal of his problems) as this too can upset him, even though he may not show it.
Get your sons PT and piano teacher to emphasis the posture thing to him when using the piano etc. and also try making the posture thing a game play toy soldiers etc so he has to sit up nice and straight etc (just a suggestion).
Hope this helps, I wish that I had been diagnosed at your sons age because then I may not have the amount of problems that I have now due to my connective tissue/collegan/ hypermobility disorder. By the way what country are you in there may be other people with hypermobile kids in your area and you could statrt your own play type group. I am in Australia. or someone might be able to sugest doctors or other organinsations in your area

By Barbara Scott on Monday, January 14, 2002 - 06:11 pm:

Margareth and Sharon-

Thanks so much for your comments and insights! They help me put myself in my son's shoes a bit, as well as giving practical tips. You are both especially helpful in emphasizing that because my son doesn't reveal his dismay, that doesn't mean he doesn't feel it. He is an extremely private person, always has been.

His "PT" program is actually planned by an Occupational Therapist, and strives for a balance of overall conditioning and specific hand strengthening/fine motor skills. Just today his OT also commented that she would look into splinting for him! So month by month, I see real gains.

Thanks again-- you give me hope that when he is a bit older, he can himself find an on-line community with supportive people like you!

By Ian on Monday, January 14, 2002 - 07:01 pm:

With joint hyper mobility it is very important to keep excess weight off and maintain good muscle tone. Harsh exercises (yes - like soccer) do not do anything for the ankles, knees, hip sockets and back. It is very important that you speak with the teachers because so often they start the process of joint disaster by making a child do things a HMS child should not do. While most children can do lifts this sort of thing may be too much for a hyper mobile and the next thing you will find is the shoulder dislocating. If it takes support shoes to control ankle movement; if it takes elastic support items on the knees then consider such items at the first sign of problems. Explain to the child that there are limitations in life and to live within those limitations is essential.