Doctors tried to tell us that my son's physical differences were not bad enough to require therapy. One doctor told us that he had a friend in college that probably had mild hypotonia and wasn't quite as coordinated as other people and he made it sound like it was just individual differences--kind of like hair color, nothing to be too concerned about. His friend also did musical theater like my son.

My 9 year old who didn't walk until he was 18 1/2 months old and never crawled who probably should have had physical therapy never received it. His doctor would not sign the paperwork to authorize PT but instead referred him to a neurologist who couldn't find anything wrong but said he couldn't rule out a congenital myopathy. Shortly after that he started walking and they seemed to think he was okay.

He didn't go to preschool so I didn't realize that he was still physically different. But when he started Kindergarten at age five he was afraid to go up and down stairs and he would talk to the teacher on the playground instead of playing with the other kids. He couldn't cut well or color in the lines very well or draw well but he could read well and his favorite book to read was a science encyclopedia which he brought to school to read to the class with his letter of the week show & tell for the letter E. The kids were just not interested in the things he was. The only thing I remember seeing him do with the other kids was play with the puppet theater and pretend he was different characters with voices and everything and the other kids seemed to like this. He found that he could make other people laugh and he really enjoyed this. This is how he deals with this mild invisible disability.

At age seven he saw a developmental pediatrician, was tested by an OT, and he was also given the WIAT by certified educational psychologist. They told me he was gifted, that he did not have Aspergers, and that I should have him do activities from the Out of Sync Child Has Fun and get him a chin up bar for his room. We did all of that and he still has problems. I realize now that his biggest problems have more to do with motor planning and apparently this did not show up on the test the OT gave him. Since he had learned (with great difficulty) how to skip and do forward rolls in dance and gymnastics he could do the things on the test so it didn't look like there was much of a problem. At the time I couldn't understand how other people could see these differences but the professionals couldn't. The developmental pediatrician did not give us a diagnosis but in the report it mentioned his vestibular and proprioceptive sensory issues which led to my reading about sensory integration dysfunction and my son has a lot of the characteristics for vestibular and proprioceptive dysfunction. He also fits a lot of what I have read about motor dyspraxia.

The only therapy he received was vision therapy which helped with tracking issues and helped him read for longer periods without his eyes tiring, but I still don't think he can read as long as other people without getting tired and I worry that this will cause problems with testing.

We hope to get a diagnosis for in a few weeks so he can explain to other people what this difference is, if he chooses to. Other kids notice the difference, especially at things like obstacle courses at his scout camps. New kids in the theater class wonder why I still have to help a nine year old with fast costume changes. Although he does not have an unusual gait, he runs a little differently. He takes longer to learn a series of dance steps than anyone else in his musical theater group but can memorize words and songs faster than most of them, even the older teenagers. People don't understand this difference. He doesn't appear physically different and he seems so smart in every other way--he enjoys reading psychology related books and articles, loves playing MMORPG games and wants to learn how to design computer and video games, is two years advanced in math in spite of handwriting difficulties and always wanting to solve problems in a different way than I was taught, is practicing for a spelling bee, and he can carry on a conversation about so many things because he reads the news online or listens to it. They notice that he seems a little weaker and has a little less endurance than they do. He refuses to do crafts around other kids and I don't force him to. He is self conscious about the way he draws so he won't do it in front of other people. I wish I had demanded therapy of some kind. I wish I hadn't heard about gifted kids and asynchronous development and overexcitabilities because I thought that is all it was so I didn't demand therapy for his differences. I wish I could say that I tried everything. Now I wonder if it is too late.

I also thought maybe he was just very cautious when he would stand and watch other kids for a while before getting on playground equipment. I used to hate those indoor playgrounds at fast food restaurants because if my son got the nerve to go up in one he couldn't get up the nerve to come down the slide or down the ladder and I would have to go up in the thing and get him. People tell me that "he thinks too much" before he tries anything.

My son did something else that made some people think he might have Aspergers but can also be a sign of sensory issues--he flapped his hands when he got excited. He stopped doing this in public, but my sister thinks he must have Aspergers because he used to do this and he talks like an adult using a better vocabulary than most adults where we live and the fact that he started reading at 2 1/2 without being taught. But he is very social and his social skills are better than mine. I was extremely shy as a child and wouldn't look people in the eye and wouldn't speak to people outside of my family and I have two uncles who are engineers and I think if you have engineers in the family they automatically think possible Aspergers.

I do not have Aspergers. I was just a very shy kid with anxiety problems. I don't doubt for a minute that my son would be misdiagnosed with Aspergers if he were more like the way I was as a child. I didn't really overcome my shyness until I was an adult.

I think it must be difficult for doctors to make a diagnosis for such outside-the-box children and that is why I continue to learn as much as I can on my own about my son's issues. But my son still just thinks I should just quit worrying about it and accept his differences. He seems happy enough and I don't think he has any major self esteem problems, except for the occasional comments about other kids thinking he is a geek or "white and nerdy." Since he homeschools, he is only around friends who accept him for who he is and who seem to really enjoy his company and he doesn't have to deal with the bullies at school that his gifted friends who don't do sports have to deal with.

Hi Lori,

Sorry you had such a bad experience with the doctors. Glad to know your son is doing well now.
FWIW, I have a friend with a child that was diagnosed with hypotonia around birth. Also has sensory integration issues. That child has had all kinds of therapy beginning in infancy. I think my friend would say it's fair to describe child's progress with the support of therapy as marginal. There is no way to know if therapy would have solved the problem and you can't go back anyhow, so please don't be too hard on yourself for not insisting on it.
I am definately from an out of the box type of family. It can be frustrating and sometimes it would be nice to have a set diagnosis and perhaps a manual to go with! Unfortunately, it's never easy and I hope you find a lot of support here.

Incog

Hi Lori,
I'm an SI certified OT and also parent of a GT 6 y/o. What you describe certainly sounds like dyspraxia. I've recently noticed that gifted kids can certainly compensate better than most when it comes to issues related to dyspraxia. Many kids I see look really good until you push them into new areas of motor skills. It's the novelty that trips up someone with dyspraxia. Most kids with good intellectual skills are also really good at what we call "practice to mastery" when they are highly motivated to achieve at a task.

Who are you seeing now for a diagnosis? Try to find an SI certified OT and one who also knows some interventions as adjuncts to OT. I do Therapeutic Listening and Interactive Metronome, both of which are auditory based interventions that can help with dyspraxia. He is not too old to seek out intervention, if he is struggling with differences that cause him frustration or anxiety during daily activities.

Feel free to email me if you have questions. Best of luck. It's good to hear that your son has found things he loves. No matter what, it's most important to just be able to pursue what we love doing.

He does compensate well if he has enough time to practice. For instance, in one of the songs the group did, "King of New York" from Newsies the choreographer had him do a forward roll at the same time as another boy and they were supposed to use a word in the song as their cue. When they were first learning the dance, my son could not do it fast enough, but by the day of the performance he could. I asked him how he managed to do it and he said when he is told to listen for a certain cue he has to come up with his own--usually a word or two before what the choreographer says in order to coordinate his movements with the other kids. His body seems to take slightly longer to respond and this is how he compensates. He also had to do a spin around dance move on his knees that was difficult at first but he was able to do it by the day of the performance and he could do it in time with the music. Another song he had to sing and dance to was "America" from West Side Story and the music is very fast paced. He did well enough on this dance also that his problems were not noticeable--but they put him on the back row of dancers in the more difficult part just in case he couldn't do it.

I wonder if I will always have to help him with quick costume changes. I can't imagine that he will ever be fast enough with buttons to be able to do it himself.

Do you think Therapeutic Listening and Interactive Metronome would be any better for him than what he is already doing? He has had to dance and sing in time to music for the last five years and he has been in piano lessons for four years to help with fine motor coordination.

My special ed teacher friend told me about a friend of hers whose son has sensory issues like my son and is doing listening therapy but he had academic problems that my son does not. My son had always been a very good auditory and visual learner. His difficulties are only motor related like the handwriting, and tests did show that he had visual motor integration problems a few years ago. He homeschools and types most of his work now. Would Therapeutic Listening or Interactive Metronome help with this?

Since he homeschools I wouldn't say his differences cause him that much frustration or anxiety now that we have found ways around handwriting difficulties.

It is when he is around kids his age like at Cub Scouts and not being able to skate with other homeschoolers that his sensory and motor planning issues cause a problem. He has talked about quitting scouts because of his differences.

I would also really love for him to learn how to swim and we can't seem to find a class that allows the extra time he needs to get used to the water and actually learn to swim.

He will be seeing a developmental pediatrician he last saw two years ago. I don't know if their OT is SI certified. All I was told is that testing is supposed to take about two hours.

Thanks. I really do appreciate the support.

Hey Lori - my son had real difficulty learning how to swim. He is very sensitive and cautious about certain things - like sticking his head under water. We found fantastic private swimming lessons at a local university. It literally took about the water equivelent of him taking the 1st level class about 4 or 5 times, but now he's a swimmer and is doing fine in the level 2 class with everyone else. You may be able to find something like that if you call around to local swim programs? It worked well for us!

Good luck!

Lori:
Actually, what you describe in the last post is *exactly* what Interactive Metronome could help. He sounds too high level for Therapeutic Listening although "The Listening Program" might address some of the issues (two different auditory stim programs, similar names, very confusing!). But, Interactive Metronome is designed to tap into the underlying neurological processes of timing and sequencing. What I see after the 5 week program is that the person typically increases in level of automaticity for coordinated movement. I had an adult with Tourette's do the program who reported that before IM he had to think "right, left, right, left" while walking and couldn't dance or catch a ball well at all. After IM, he learned to dance, could "walk and talk" at the same time and was surprised when he reached out and caught a ball that someone had tossed unexpectedly toward him at a picnic. He was thrilled with how it took his coordination to another level, where he didn't have to *think* about every movement.

IM could be worth the 5 weeks time investment, perhaps over the summer when school is out, to see if it will help your son's movements become more automatic. Check for a provider and more info at their website: www.interactivemetronome.com

Thanks. After watching the video on their website it made me wonder if the Dance, Dance Revolution game that my son already has might help him if he would actually use it. I found a site with comments from parents who had tried both DDR and IM and one parent said he got similar results with Dance Dance Revolution. I think we might try that first.

On the IM site, under research, there should be a link or reference to study published in the American Journal of Occupational Therapy. In that study they compared three groups of boys with ADHD (specific ages, but I forget that right now). The three groups were 1)control group with no intervention, 2)group that played video games (duration, frequency and type of games were not specified in the research article, from my recollection) and 3)a group of boys who participated in IM training.

The IM group and the video game group BOTH showed progress in areas assessed. But the IM group made MORE progress and in more areas than the video game group.

I agree that video game use can improve some skill areas. I think if you can get your son to play DDR and he makes gains, great. The plus for video games is that it is so motivating. We got a Wii console for Christmas. I have no doubt that playing and improving your performance on Wii games (certain sports related games, timing and coordination games) carries over into real life experiences. We just got the purchase of a system approved for our physical rehab dept. I'll be eager to hear how DDR goes for your son!
Good luck!

Debbie,
Do you know at what age such programs are appropriate and effective? My son has problems with coordination and balance (his running is very clumsy, cannot catch a ball well, cannot walk the balance beam no matter how low, etc.). I can imagine interventions like that could be helpful in the future if he does not improve. But he is only 3 right now (almost 4) and I don't know if he would cooperate or enjoy such formal programs. Also, at this age, it is not clear whether he has a serious problem or whether it's just his age and personality. He is very cautious and the activities he prefers are naturally sedentary (reading, computer, etc.). I was that way when I was little - I hated gym classes, occasionally got teased for lack of athleticism, could never quite master those childhood activities that come so easily for many like swimming and riding a bike... I guess I'm a natural nerd at heart, but aren't there a lot of "normal" people like that? Nobody, including myself, ever thought there was anything wrong with me. At what point in the spectrum do we decide what is normal and what is problematic? If my son grows to accept that he will never be graceful and feels perfectly happy to give up on becoming a professional athlete, should I still worry about getting him formal help?

Sorry, I guess I'm starting to ramble. I feel conflicted about how to deal with my son who has many amazing talents but also some unusual deficits. I want to prevent any harm to his self esteem by providing opportunities to correct his problems early on, but I'm also afraid that if I intervene unnecessarily, my efforts might actually do more harm than good. Do you have any thoughts on this?

Junior