Collin’s Story

 

CollinWhen our son Collin was born, his older sister had just turned 3 and his brother was just 17 months older than he. My husband and I, just by default, had a pretty good sense of what was happening developmentally by the time Collin came along. Also, I am a physical therapist and my husband is a sports medicine physician, so we also have some medical background. When Collin was learning to walk, he was falling constantly, beyond the norm. I looked for helmets as he fell and bumped his head often. When Collin was 20 mos old, he wasn’t talking as the other kids had. He began early intervention speech therapy where the therapy concentrated on helping him have a “bank of words.” Collin did very well with this, and did not have trouble with articulation, but more with finding the word and getting it out. What was going on??? We took him to a child neurologist at a major medical center in Philadelphia at age 3. The physician there acted as if we wanted something to be wrong with our son who ran down the hall toward us running right into us. The neurologist suggested we come back in a year. We continued with our early intervention speech therapy. At age 4, we were at a park with our friends, and the kids were taking turns sitting in an kid sized cup and spinning round and round. When I helped Collin out of the cup, he fell over, and took a minute to recover. He wanted to do it again, and again. I did a little experiment… how long did it take the other kids to recover? Did he have nystagmus (involuntary eye movement) after being spun? Sure enough, the other kids (5 others, age 3 1/2, 5 and 7 y.o.) had nystagmus for about 1-2 seconds, then quickly recovered their balance, but Collin‘s nystagmus lasted 14 seconds or more, and even then was falling over! Off to a vestibular evaluation and to see another neurologist at a different child major medical center near us… He was young for the vestibular testing at the time, and he did well in the spinning chair test, but poorly on the balance/ foam and dome testing. The neurologist suggested PT for balance,and noted that he was just “slow” with a low IQ. Really. Around the same time, we also did speech hippo therapy (riding a horse) locally to help him with his prosody or his timing for speaking. Being on the horse also helped with his core strength and it was fun for him as he loved being around the horses.

When he was in preschool, he continued with his speech therapy and also had an educational consultant through our local intermediate unit. Everyone who met him and worked with him said…”its so strange, he has all of these little deficits in so many areas…I wonder what it could be…” He did well in preschool, but the educational consultant suggested trying to get him PT and OT as well. He didn’t have a 25% deficit, required for therapy, but they all noted that the quality of his movement needed some help, so he was approved for 6 months of OT and PT. He did well with both, slowly and steadily making improvements and doing all they asked. His balance still wasn’t improving, and the therapist kept working on the balance beam and standing on one leg. We (the PT he was seeing and I) noticed that though he had fun, the rote repetition for balance and coordination just wasn’t doing the trick- the maximum time he could balance on one leg was 3 seconds, and that wasn’t steady in the least! We were discharged from all of our IU services when he was 5 1/2, and in pre-K. At the same time, I took an online continuing education class for DCD. This was truly the eye opener for us! Finally we had found a description of Collin!!! Unfortunately, there wasn’t much information on dyspraxia in the US, only in the UK. I did find this very website and saw the list of practitioners who treated dyspraxia and started by contacting 3 of them. We were so fortunate that one center, A Total Approach, in Glenn Mills PA returned my email by a phone call. A few days later, I spoke with Angela Gaudiuso Johnson, an extremely knowledgable head OT, and wonderful mentor at A Total Approach (ATA) for 45 minutes discussing our experiences. Could they help? Were they familiar with dyspraxia, because it seemed no one had ever heard of it… and the answer was YES!!! We live about 1 hr, 15 min away from their clinic, you’d better believe we’d be there! A new chapter began….Upon their evaluation, they found he had sensory processing disorder and dyspraxia. He wasn’t crossing midline consistently, standing at a table he had so much postural sway he used the table for support, and he was using so much energy to just be upright (fighting our primitive reflexes that hadn’t yet been integrated) that he missed some of the typical developmental steps. As for the vestibular system, he craved the movement, but his brain wasn’t registering it.

Our therapy began just 2 years ago (2012) when Collin was 5 1/2 years old, now he’s 7 1/2 and I can’t believe how far he’s come! Lots and lots of work, lots and lots of time! We did Tomatis (a listening program) while playing (actually therapy) where there was a calming of his system and a notable change in his balance/ vestibular system/ body awareness over the course of 5 months. A few months later, he did more Tomatis with more improvements, Interactive Metronome (for timing- we have to do this one again, he still needs work in this area). 2013, Collin did Cellfield jr. for reading, where the first time he went through the program he could finally recognize numbers above 10, a task we would work on, he would recite the numbers 14, 16, 20, etc, but the next day, would have little carryover. No problem after Cellfield jr. Cellfield also works on the oculomotor system which is commonly involved with dyspraxia- “you can’t take the eyes out of the kid” our DO had said. When he finished the Cellfield program, we continued with vision therapy where they noted a jump in his skills. We also did the P.L.A.Y. project based on Stanley Greenspan’s work to guide him through the developmental steps he missed previously. And, another Cellfield for reading- this time, his reading did really jump! More success! We also just recently finished a Cogmed program (computer based at home) to improve his working memory.

How is he doing now? As of last summer, he was riding a two wheeled scooter, with one foot behind the other, and was riding a 2 wheeled bicycle (no training wheels- this from a child who would somehow fall over riding a bike even with training wheels)! Amazing!!! He plays soccer (sure, sometimes kicks and misses the ball), and basketball, and he’s starting baseball (catching isn’t 100%- but this is where IM would help with timing) but doesn’t look too different than most kids his age. He is tying his shoes himself most days. He has some assistance with reading and math, and receives OT but he’s doing well in school. He doesn’t love going to school, but does come home happy. His speech is wonderful, the other day, he was doing a play by play of his brother playing basketball. I stopped an listened, so impressed, then I heard him say, “do you know how hard that is to talk that fast?” But, he did it. He is loved by his teachers and all of the support teachers and OT who work with him. I truly believe that there is help for kids and adults with dyspraxia. All of these programs have helped our son Collin so much. At ATA, they have found programs that work at the brain level, if they don’t feel as if they are working, they keep searching for programs that are successful. I had mentioned to Maude LaRoux, an accomplished international educator who is the owner and head OT at ATA that I had read that, in the UK people with dyspraxia are eligible for disability when they reach a certain age. She simply replied, that we’re working with Collin so that he does not need that at all. True, very true. So far, so good.Collin