Patrick's Oculomotor Apraxia is not progressive. Patrick's MRI showed no indication of Joubert Syndrome, or any other syndrome. Patrick has shown gross and fine motor delays (which have improved significantly), borderline speech delay, but no cognitive nor social delay whatsoever. So all in all, so far we can say that of all Oculomotor Apraxia cases, Patrick has a mild to moderate case.
What I first noticed in Patrick when he was an infant, was that sometimes he would try to turn the head and the eyes to look at something, but there was a delay in the eyes. The eyes would stay fixed at whatever he was looking originally, even after the head had turned, and then a second later the eyes would catch up. The Pediatric Neuro-Ophtalmologist tried to perform a few tests at his office to find out the degree of the problem, but Patrick was still too young at that point to follow many of the directions, so we were asked to go back a year later. We haven't had that follow up yet, because we want to wait for Patrick to be at least 2 years old so he can be as helpful as possible during the tests.
The delay was significantly more obvious when he was a baby, but I think that it's been getting better. I have noticed, for example, that the problem in the eyes is less evident when Patrick is well rested. When it's too late at night, or he hasn't had a nap in a while, it looks like if he were so tired that his eyes are too tired as well to keep up with the head movements. Since then I have ensured that Patrick gets a lot of sleep each day. Today, Patrick is able to follow slow objects, and he is able to turn the head WITH the eyes to right and left when the turns are at about 45 degrees. But if it's a sharp, quick turn on the head (like a complete 90 degrees turn or more) then it's when you notice the delay in the eyes. I'm constantly paying attention to it, checking if it's getting better or worst, so I notice every time it happens; however, people that don't know about Patrick's eye issue, will sometimes overlook the lack of coordination between the eyes and the head.
Overall it doesn't seem to affect his everyday life just yet. It looks like he can see everything perfectly well, whether it is near, far, big, or small. The problem is when things move too fast. It is difficult for him to catch up, so he gets a bit frustrated some times when something is new AND moves fast. This is caused by both the Oculomotor Apraxia (because he easily loses sight of fast movers) and the low muscle tone (because he gets afraid of being attacked by those fast movers without being able to run away). This is why children and animals would easily frustrate him before he learned to walk. He didn't know how to defend himself from them, it was like if he were very well aware of his physical limitations, so he would either cry or simply paralyze to observe, very alert.
As he becomes more physically able to move around and defend himself, his interactions with both animals and children are getting better. We recently welcome a 1 year old Husky/German Shepard to our family, and Patrick just loves him. I'm sure that the more he improves his low muscle tone, the more social he will be with anyone as he is now with his parents and acquaintances. Don't get me wrong, he isn't a shy boy, and as a matter of fact, he has done really great at all his social skills evaluations. He has no problem asking a random shopper at the store to be picked up by her after offering a smile, and likes to share his food with random eaters at restaurants. I'm constantly told on the street that he is very smiley (and cute), BUT this is usually the case when things are moving to a speed his is comfortable with.
I'm confident that as soon as he is able to talk and perfectly move around on his feet, people won't be able to tell he has any sort of condition... at least until he starts school. Most likely the first years at school will be complicated for him, because it won't be easy to learn to read as soon as his friends, giving that the eyes have to move smoothly from left to right to perform this task. Same will be when following a ball while playing soccer, basketball, tennis and such. If I want to have a sporty guy, and perhaps an Olympic medalist in the making, maybe swimming is the way to go. That being said, his favorite toy is his soccer ball, and his favorite word is "ba" (ball), so maybe if he gets started on sports early, they won't be too challenging once he gets older?
It's too early to know any of that, so in the meantime we will keep handling the situation as we have so far: Like he can do EVERYTHING other kids do. Tasks are just taking him a bit more time and effort, but we will continue on the philosophy that he always gets and always will get to do every single thing, until the time comes when he is not capable of doing something, if that even ever happens.
What I first noticed in Patrick when he was an infant, was that sometimes he would try to turn the head and the eyes to look at something, but there was a delay in the eyes. The eyes would stay fixed at whatever he was looking originally, even after the head had turned, and then a second later the eyes would catch up. The Pediatric Neuro-Ophtalmologist tried to perform a few tests at his office to find out the degree of the problem, but Patrick was still too young at that point to follow many of the directions, so we were asked to go back a year later. We haven't had that follow up yet, because we want to wait for Patrick to be at least 2 years old so he can be as helpful as possible during the tests.
The delay was significantly more obvious when he was a baby, but I think that it's been getting better. I have noticed, for example, that the problem in the eyes is less evident when Patrick is well rested. When it's too late at night, or he hasn't had a nap in a while, it looks like if he were so tired that his eyes are too tired as well to keep up with the head movements. Since then I have ensured that Patrick gets a lot of sleep each day. Today, Patrick is able to follow slow objects, and he is able to turn the head WITH the eyes to right and left when the turns are at about 45 degrees. But if it's a sharp, quick turn on the head (like a complete 90 degrees turn or more) then it's when you notice the delay in the eyes. I'm constantly paying attention to it, checking if it's getting better or worst, so I notice every time it happens; however, people that don't know about Patrick's eye issue, will sometimes overlook the lack of coordination between the eyes and the head.
Overall it doesn't seem to affect his everyday life just yet. It looks like he can see everything perfectly well, whether it is near, far, big, or small. The problem is when things move too fast. It is difficult for him to catch up, so he gets a bit frustrated some times when something is new AND moves fast. This is caused by both the Oculomotor Apraxia (because he easily loses sight of fast movers) and the low muscle tone (because he gets afraid of being attacked by those fast movers without being able to run away). This is why children and animals would easily frustrate him before he learned to walk. He didn't know how to defend himself from them, it was like if he were very well aware of his physical limitations, so he would either cry or simply paralyze to observe, very alert.
As he becomes more physically able to move around and defend himself, his interactions with both animals and children are getting better. We recently welcome a 1 year old Husky/German Shepard to our family, and Patrick just loves him. I'm sure that the more he improves his low muscle tone, the more social he will be with anyone as he is now with his parents and acquaintances. Don't get me wrong, he isn't a shy boy, and as a matter of fact, he has done really great at all his social skills evaluations. He has no problem asking a random shopper at the store to be picked up by her after offering a smile, and likes to share his food with random eaters at restaurants. I'm constantly told on the street that he is very smiley (and cute), BUT this is usually the case when things are moving to a speed his is comfortable with.
Video of Patrick and Lobo
I'm confident that as soon as he is able to talk and perfectly move around on his feet, people won't be able to tell he has any sort of condition... at least until he starts school. Most likely the first years at school will be complicated for him, because it won't be easy to learn to read as soon as his friends, giving that the eyes have to move smoothly from left to right to perform this task. Same will be when following a ball while playing soccer, basketball, tennis and such. If I want to have a sporty guy, and perhaps an Olympic medalist in the making, maybe swimming is the way to go. That being said, his favorite toy is his soccer ball, and his favorite word is "ba" (ball), so maybe if he gets started on sports early, they won't be too challenging once he gets older?
It's too early to know any of that, so in the meantime we will keep handling the situation as we have so far: Like he can do EVERYTHING other kids do. Tasks are just taking him a bit more time and effort, but we will continue on the philosophy that he always gets and always will get to do every single thing, until the time comes when he is not capable of doing something, if that even ever happens.
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