Children's development can be classified in 5 different areas:
The fact that Patrick has absolutely no learning problem makes it easier to handle his physical issues, because he understands every command and can help us following instructions to perform his exercises (as long as his body is physically able to do it). Now, my son not only takes commands in English, he also understands Spanish!! I'm trying to speak in Spanish to him during the day and seems like he is picking it up pretty fast. I really don't know how these things are so natural for toddlers. I can say "ven para aca" and he will come to me, and dad will say "come over here" and he will do it as well.
When we learned the diagnosis, I wasn't sure if Patrick would be academically successful, or if he would have any problem learning in his every day life. He couldn't do many things that other kids his age were doing so I was afraid it was because his brain just couldn't process the tasks. Well, I was wrong. I remember, for example, how it took a bit longer for Patrick to be able to eat finger foods and to drink from a straw. I kept teaching him but it seemed like he just didn't "get it", although the fact was that his fine motor skills needed to improve before he could finger grasp, and his low muscle tone in his mouth had to improve before he could take any water from a straw.
There are some other things that he is just learning to do that he should have learned months ago. These abilities have to do with coordination, whether is coordinating the hands or the whole body. You will notice the delay in activities like putting on clothes, doing puzzles, playing with legos... but it isn't because his brain can't compute the tasks but rather because his body isn't able to do it yet.
Now that he is walking, for example, he shows off his smarts more often. When we are in the basement during the day, he likes to go upstairs and play in the kitchen. First he learned to climb to the stairs by the side, but after I forbid him from climbing the stairs from the side, he decided that then he should figure out how to open the gate on his own, and so he did. Below is a video of him. We passed the video around to some of our close friends and some of them were like "wow, my kid still can't do that!" (and some of them are even older than Patrick!)
I shared this blog on my facebook page last week and I want to thank all the friends and family for taking the time to read it... I got lots of hits! I also received kind emails from friends that didn't know that Patrick had OMA. It is great to know they didn't know, it tells me it is not that obvious! But I also want to say that I hope this blog doesn't sound like Patrick has a terrible chronic illness and we are suffering. It's nowhere near that. Yes, it's a rare disorder and when parents learn the diagnosis, they may think is the worst thing in the world, but I created this blog to prove that it isn't.
Doctors don't tell you much about what the outcome will be, and there is very little information about it online, so we expected the worst for months, but not anymore. My son has greatly improved, is doing great, and will be just fine, like nothing ever happened -it is just taking some extra work and time. I remember the days I used to be sad about it not knowing what to expect, but now I realize how silly I was. It is just a learning process for all of us who are going through it I guess. I know there will be still some bumps in the road ahead, but the Williamsons are ready to tackle anything! And with such a smart kid, how couldn't we?
- Gross Motor Skills
- Fine Motor Skills
- Feeding Skills
- Speech Skills
- Cognitive Skills
I think is important to dedicate a post about Patrick's cognitive development. Children with Oculomotor Apraxia usually have no cognitive development issues. Most times, Oculomotor Apraxia is part of a bigger health problem, like Joubert Syndrome, and in these cases, cognitive development is most likely affected. But, for kids like Patrick, whose only problem is a slightly underdeveloped Cerebellum Vermis, cognitive development is not affected.
The fact that Patrick has absolutely no learning problem makes it easier to handle his physical issues, because he understands every command and can help us following instructions to perform his exercises (as long as his body is physically able to do it). Now, my son not only takes commands in English, he also understands Spanish!! I'm trying to speak in Spanish to him during the day and seems like he is picking it up pretty fast. I really don't know how these things are so natural for toddlers. I can say "ven para aca" and he will come to me, and dad will say "come over here" and he will do it as well.
When we learned the diagnosis, I wasn't sure if Patrick would be academically successful, or if he would have any problem learning in his every day life. He couldn't do many things that other kids his age were doing so I was afraid it was because his brain just couldn't process the tasks. Well, I was wrong. I remember, for example, how it took a bit longer for Patrick to be able to eat finger foods and to drink from a straw. I kept teaching him but it seemed like he just didn't "get it", although the fact was that his fine motor skills needed to improve before he could finger grasp, and his low muscle tone in his mouth had to improve before he could take any water from a straw.
There are some other things that he is just learning to do that he should have learned months ago. These abilities have to do with coordination, whether is coordinating the hands or the whole body. You will notice the delay in activities like putting on clothes, doing puzzles, playing with legos... but it isn't because his brain can't compute the tasks but rather because his body isn't able to do it yet.
Now that he is walking, for example, he shows off his smarts more often. When we are in the basement during the day, he likes to go upstairs and play in the kitchen. First he learned to climb to the stairs by the side, but after I forbid him from climbing the stairs from the side, he decided that then he should figure out how to open the gate on his own, and so he did. Below is a video of him. We passed the video around to some of our close friends and some of them were like "wow, my kid still can't do that!" (and some of them are even older than Patrick!)
I shared this blog on my facebook page last week and I want to thank all the friends and family for taking the time to read it... I got lots of hits! I also received kind emails from friends that didn't know that Patrick had OMA. It is great to know they didn't know, it tells me it is not that obvious! But I also want to say that I hope this blog doesn't sound like Patrick has a terrible chronic illness and we are suffering. It's nowhere near that. Yes, it's a rare disorder and when parents learn the diagnosis, they may think is the worst thing in the world, but I created this blog to prove that it isn't.
Doctors don't tell you much about what the outcome will be, and there is very little information about it online, so we expected the worst for months, but not anymore. My son has greatly improved, is doing great, and will be just fine, like nothing ever happened -it is just taking some extra work and time. I remember the days I used to be sad about it not knowing what to expect, but now I realize how silly I was. It is just a learning process for all of us who are going through it I guess. I know there will be still some bumps in the road ahead, but the Williamsons are ready to tackle anything! And with such a smart kid, how couldn't we?
Hi there, thank you so much for taking the time to do this blog. My little girl Olivia has hypotonia and has just been diagnosed with OMA. We have an appointment with the nuerologist next month do discuss the results of her MRI. I have to admit to freaking out a little bit. Not knowing what it all means for her development is worrisome as a parent. We go to physio each week and will start OT soon. Olivia has made so much progress in the last fours months, it's amazing. she's gone from being not able to sit up (but not get herself to sitting and just falling over) at 11 months to now at 16 months where she can cruise and independent standing for short periods of time. her speech is a little slower. she seems to make developmental spurts in one area or another but now she is making lots of different sounds and says mama papa, bath etc. she trys to copy the other children (3 older siblings) do puzzles and put mechano together. it's early days for us, yes, it is more challenging especially meeting the needs of her siblings as well, but I see her develop each week and it gives me hope too. Thank you for your blog. I live in Canada and this is really the only thing I have found online that is making any sense to me. I' posting as anon becuase i don't have google account
ReplyDeleteHi there! Thank you for writing to me. How's Olivia doing? I'm curious to hear what the neurologist had to say about her MRI. I would also like to hear more about how is she doing... I'm sure she has progressed quite a bit since you last wrote. The therapies helped Patrick a lot, too. Sometimes I feel like he is sort of "stuck" for weeks, but then other times he has a very quick progress. If you ever feel inclined to share more about Olivia's story on this blog, please do so! Here is a link with more information on how to do that. http://overcomingtinyobstacles.blogspot.com/2014/02/overcoming-your-tiny-obstacles.html
DeleteThank you!
Thank you so much for writing this post (and the whole blog -- I can't tell you how comforting it is). I have identical twin boys, both of whom have OMA. We noticed it first in Oliver, but after we knew what to look for in Caleb, we realized he also had it (though not nearly as severe and only really noticeable when you are purposely trying to get him to track something). We noticed their developmental delays and got them in therapy before we even knew there was anything different about their eye movement. We just had an MRI for Oliver, and it came back normal! Before that, I was so hesitant to delve into literature or blogs because I didn't know what was wrong, and I QUICKLY fell down the rabbit hole with worry. Now that I know the MRI was normal, reading about your son gives me so much hope. Thank you :)
ReplyDeleteThank you so much for writing this post (and the whole blog -- I can't tell you how comforting it is). I have identical twin boys, both of whom have OMA. We noticed it first in Oliver, but after we knew what to look for in Caleb, we realized he also had it (though not nearly as severe and only really noticeable when you are purposely trying to get him to track something). We noticed their developmental delays and got them in therapy before we even knew there was anything different about their eye movement. We just had an MRI for Oliver, and it came back normal! Before that, I was so hesitant to delve into literature or blogs because I didn't know what was wrong, and I QUICKLY fell down the rabbit hole with worry. Now that I know the MRI was normal, reading about your son gives me so much hope. Thank you :)
ReplyDelete