On my last post I mentioned I recently joined a Facebook group for people who have Ocular Motor Apraxia. Right after I joined the group, I asked if anyone on there lived in the area, because I was hoping to do a play date and get to learn more about what other people in my area are doing to help their kids.
It turns out, out of the 300+ active members of the group, the person who told me about this group and myself are the only ones living in the area. I realized then, as people were commenting, that many of them don't even live in United States. However, one person living in North Carolina said she and her family were coming to DC to visit some friends and would like to meet with us. The mother and I started an email exchange and we decided to have them over at our house. I was curious to ask her tons of questions about her son, but I figured it was best to wait until we met. Finally the day arrived, and we met at our house. We spent around 3 hours talking and discovering how many similarities our children had.
To begin, our OMA kids are boys. They also turned 3 this year (Patrick being older than Brendan by a couple of weeks). They have one healthy brother (Patrick's is younger by two years, Brendan's is older by almost two years).
In the ways they have developed, there are also similarities. Patrick and Brendan walked around the age of two, have same level of speech delay, a bit of balance and coordination issues, their feet pronate and so they both wear the same type of braces, and neither one have had an specific diagnosis other than Ocular Motor Apraxia. Other areas seem to be perfectly normal in both kids, with the only difference being that Patrick has some constipation issues, while Brendan's head thrusts some times. Brendan seems to be somewhat ahead on fine motor skills, while Patrick seems to be somewhat ahead on gross motor skills. Neither one of them is potty trained, although neither one of the parents have tried too hard... we are kind of waiting for them to show that they are ready so we can start the transition.
Their likes and habits are similar, too. When I opened the door, my husband was in the living room waiting for them. I tried to say hello to everyone and didn't pay attention to something my husband did: As Brendan was coming into the house, his tongue was sticking out a bit, holding it between the lower front teeth and his lip, just like Patrick does. My husband told me later that when he saw that, he knew immediately that of their two boys, Brendan was the one like Patrick. As we chat through the afternoon, we learned that they both enjoy water, cuddling with the parents more than the usual, are sweet, and good brothers. They both recently discovered they don't want to be dressed so it's a battle putting clothes on them. Neither one is a fan of the TV, but both love music. While the siblings were playing and acting like nothing was going on, Brendan and Patrick knew something was going on and they proceeded to act with caution. They were checking out the whole situation before they decided to start playing. And only after playing for awhile on their own, they decided to approach each other. Talk about similar personalities!
Brendan hasn't had an MRI, but I have the feeling that if he had one, his brain would look almost identical to Patrick's. As much as I wish there were not other children with rare disorders, it's also comforting to know that there is someone out there so similar to your son. That are parents out there going through the same exact thing you are going through. This must be a gift from God. At some point I was going bananas, because I felt that either there were healthy kids, or there were very sick kids. No kids like Patrick. The kids with OMA I learned about online, also have other diagnosis, symptoms, conditions... that Patrick doesn't have. Patrick's development is a little slow, but he can do anything and is very healthy otherwise, so I feel blessed that we found a friend for Patrick, just like him.
We all find friends we can relate to. With some, we have same likes in music, with some others is politics, or religion, or hobbies. Think of every friend you have and you will find you have something in common with everyone of them. Patrick just met a friend that has almost everything in common, even that rare thing in the eyes called Ocular Motor Apraxia. I'm looking forward to see how our kids develop, and if their likes and hobbies continue to grow similar. I'm looking forward to more play dates with them, and while we are some miles away and may not be able to see each other too often, I know we parents will do our best to keep the friendship to provide our kids with opportunities to spend some time together every now and then.
Merry Christmas Brendan and family.
It turns out, out of the 300+ active members of the group, the person who told me about this group and myself are the only ones living in the area. I realized then, as people were commenting, that many of them don't even live in United States. However, one person living in North Carolina said she and her family were coming to DC to visit some friends and would like to meet with us. The mother and I started an email exchange and we decided to have them over at our house. I was curious to ask her tons of questions about her son, but I figured it was best to wait until we met. Finally the day arrived, and we met at our house. We spent around 3 hours talking and discovering how many similarities our children had.
To begin, our OMA kids are boys. They also turned 3 this year (Patrick being older than Brendan by a couple of weeks). They have one healthy brother (Patrick's is younger by two years, Brendan's is older by almost two years).
In the ways they have developed, there are also similarities. Patrick and Brendan walked around the age of two, have same level of speech delay, a bit of balance and coordination issues, their feet pronate and so they both wear the same type of braces, and neither one have had an specific diagnosis other than Ocular Motor Apraxia. Other areas seem to be perfectly normal in both kids, with the only difference being that Patrick has some constipation issues, while Brendan's head thrusts some times. Brendan seems to be somewhat ahead on fine motor skills, while Patrick seems to be somewhat ahead on gross motor skills. Neither one of them is potty trained, although neither one of the parents have tried too hard... we are kind of waiting for them to show that they are ready so we can start the transition.
Their likes and habits are similar, too. When I opened the door, my husband was in the living room waiting for them. I tried to say hello to everyone and didn't pay attention to something my husband did: As Brendan was coming into the house, his tongue was sticking out a bit, holding it between the lower front teeth and his lip, just like Patrick does. My husband told me later that when he saw that, he knew immediately that of their two boys, Brendan was the one like Patrick. As we chat through the afternoon, we learned that they both enjoy water, cuddling with the parents more than the usual, are sweet, and good brothers. They both recently discovered they don't want to be dressed so it's a battle putting clothes on them. Neither one is a fan of the TV, but both love music. While the siblings were playing and acting like nothing was going on, Brendan and Patrick knew something was going on and they proceeded to act with caution. They were checking out the whole situation before they decided to start playing. And only after playing for awhile on their own, they decided to approach each other. Talk about similar personalities!
Brendan has a very nice family. I was very excited to see both mom and dad totally hands on. The way Brendan's parents have dealt with his condition, is the same way we have dealt with Patrick's condition. We both know very little about their diagnosis, and even though that was a burden at the beginning, now both parents feel that's actually an opportunity to not let our kids be defined by an illness. We don't know what to expect, so we take care of the obstacles as they come, if they come. We are trying to raise them as if they were two perfectly healthy children, but of course, not losing sight of their small disadvantages, like speech delay, for which we take action and help them with whatever is needed.
Brendan hasn't had an MRI, but I have the feeling that if he had one, his brain would look almost identical to Patrick's. As much as I wish there were not other children with rare disorders, it's also comforting to know that there is someone out there so similar to your son. That are parents out there going through the same exact thing you are going through. This must be a gift from God. At some point I was going bananas, because I felt that either there were healthy kids, or there were very sick kids. No kids like Patrick. The kids with OMA I learned about online, also have other diagnosis, symptoms, conditions... that Patrick doesn't have. Patrick's development is a little slow, but he can do anything and is very healthy otherwise, so I feel blessed that we found a friend for Patrick, just like him.
Merry Christmas Brendan and family.
