Building friendship: A challenge for children with OMA?

I wrote on my last post about our concerns regarding Patrick's social skills, stating that he seems to be overcoming his issues slowly but surely. Today, Patrick doesn't mind being around children, and by "doesn't mind" I mean exactly that: He won't play with them, but at least he is not bothered anymore that they are next to him. Until recently, I thought the lack of engagement was due to his developmental delays: 18 months ago, kids his age were running and climbing, when he couldn't even walk; today kids his age are singing and doing pretend play, when he can't even make a 3-word phrase. These seemed like legitimate, almost obvious reasons as to why Patrick won't engage kids, but now I'm not sure what to make of it. 

Recently, a mother of a teenager with OMA came across my blog. She wrote me an email that got me thinking. Among other things, she wrote me this: "...The most heart breaking is her social skill. From 3 years old till now (15) she has great difficulty forming friendship. Whenever she attended birthday parties, she never participated in games or activities. She's most comfortable with kids much younger or adults. My daughter is much loved & protected by her family, cousins, friends of ours, but she has great difficulty in building friendship." 

Patrick is social, but also he is not. I would say, he is very selective whom he is social with. The thing that got me thinking from that email, is the part where she says that her daughter is most comfortable with kids much younger or adults. This sounds like Patrick. Patrick's last IEP (the school Individualized Education Program) had an observation from his teacher stating: "Patrick will watch children who are playing nearby and he will play near them... Patrick mostly interacts with staff members." Do you see the different approach towards adults vs kids?

When my sister and nephew were visiting, she pointed out how funny it was that when we were out and about, Patrick loved to say hi and shake hands to elderly people. Now that I think about it, I have never seen him spontaneously shake hands, or even say hi to any child around his age (other than his brother). I observe Patrick at the playground, soft room, water park... and realize, he doesn't like playing with other kids. He isn't mean to them, he simply doesn't engage.

It takes a little while for Patrick to be comfortable to engage an adult, but once he is comfortable enough, he can be the most charming, playful and fun kid around. But then again, he won't get this way with children, no matter how much time he spends with them (he was with his peers 3 hours a day, five days a week, for 9 months!) The only lucky child to get Patrick's attention and play time is his 18 month old brother Robbie. This could confirm that it is all related to his developmental delay: Patrick is at or above his brother's developmental stage -Patrick can take the lead, and Robbie will follow him, whereas other kids are significantly advanced that are not taking considerations towards Patrick's developmental delays.

If this is true, then it means that as Patrick's grows, and matches the developmental skills of other kids, he should have no problem making friends. I could think of this as a phase, but the situation of the 15 year old teenager rises the question if there is something else going on there. She is not 3 years like Patrick anymore. 12 years later, that mother is still concerned about her daughter not being able to make friends. Mother to mother, she asks me for any advice, but sadly I have none, because up until her email, I didn't think Patrick could continue to not engage people his age as he grew older. 

During this past school year, Patrick went from not wanting to play around kids, to being OK playing around kids, and I had hoped that in the upcoming school year Patrick would simply move from being OK playing around kids, to actually playing with kids. While this scenario may happen, right now I have no answers on how to help her daughter, so I'm asking any readers out there that have older children who have gone through this, to please let us know how have you/are you dealing with a situation like this one. From a mother to another, I can tell you that any advice, a word of encouragement, or simply sharing a common story so that she knows she is not alone in this, will be greatly appreciated. If you are a teenager or an adult with OMA who has challenges making friends, I'm sure this sweet 15 year old girl will love to hear your story.

My evaluation of Patrick's preschool year

It's been an unusual long time since my last post. There hasn't been any particular reason, but there has been definitely many things I have been meaning to write, and I hope I get to each of them in the upcoming weeks (months?).

Today I'm going to talk about Patrick finishing his first year of preschool. On the last day my husband and I went to the school to thank the teachers for all their patience and dedication to our Patrick. The teacher said Patrick was a very pleasant boy the whole year, and that he improved quite a lot, specially on his speech. She mentioned she is putting a suggestion to move Patrick, and another 2 kids from his group to the afternoon program. She believes these three kids have improved the most and would benefit greatly from more challenging activities, which are offered to the afternoon class. It isn't guaranteed that the change will happen, but it looks like a good possibility!

Patrick can count (sometimes) up to 10, however, he often likes to go by pairs. When he is getting ready to go down the slide, for example, instead of counting 1, 2, 3 and go, he says: 2, 4, 6 and go! We don't know why he does this, but I actually find it funny. He doesn't know his ABCs, and can't sing any song, but he is happy to do the body movements each songs invites (Head and Shoulders, Wheels on the Bus, Itsy Bitsy Spider). He is able to sort by colors, but he is able to name only 1 or 2 colors. He only differentiates circles from lines, not any other shape. He may be able to identify one or two letters, and this is just sometimes. His drawing is still very similar to that of his 18 month old brother. Based on this skills, I could say that Patrick wasted all his year at preschool, because, really, he didn't learn much, and also, he has learned these same things from me at home.

But I didn't send Patrick to special preschool to learn the alphabet, so to be honest, I'm not too concerned about all that. Right now, when it comes to Patrick's skills, my two biggest concerns are his language and social skills, and these were the main reasons why he attended preschool. When he started school, Patrick was just beginning to put two words together, it was very rare that you would hear "mommy come", or "baby eat." And if having a limited vocabulary wasn't enough, his pronunciation was very poor, too, making it difficult for anyone to understand. Today, his pronunciation of most words are close to how they are supposed to sound. He has mastered putting two words together, and he's slowly beginning to use three words, like "Mommy come here". Now I have a very talkative toddler, and I attribute that to the school. Every single day they sang at school, did pretend play with friends, learned new vocabulary -different from what he would have been exposed at home, and all of this was directed by special education teachers who knew, better than me, how to help him achieve all that.

In regard to his social skills, a year ago Patrick wouldn't play if there were other kids close to him. He would step back and observe all the time. If we were at the playground or the soft room, he would prefer to watch them play, wait for them to be gone (or at least not too close), and then he would imitate what the other kids were doing. Today, Patrick doesn't mind the other kids. He is able to play his own games while kids are next to him, and that's an improvement that I attribute to him being able to play, eat, sing, work... every single day with other kids at school. There is, of course, much room for improvement, for instance, it would be great if Patrick actually played with the kids, rather than just not mind that there are children around him, but I will talk about this on my next post. In the meantime, let me end this post with a few pictures of Patrick's school days.

Waiting for the bus

Patrick running to us after his last day of school

Patrick and his teacher!

We like to hang Patrick's arts and crafts. He likes to point and say "Packi did!"

We took a pirate boat tour on the Potomac to celebrate his last day of school

Pirates stealing the treasure! We better get them!

Patrick misses riding the bus, and says he misses his teacher and friends as well. Fortunately, this long school break happens during the summer (when the weather is nice and we can do all sorts of outdoor activities) so I hope he has been having as much fun with us as he seems to have when he is in school!

Overcoming YOUR tiny obstacles

It makes me so happy to receive emails and read some comments from some mothers who come across this blog looking for some answers after hearing the words Ocular Motor Apraxia. I find it very interesting and informative to read your stories, but, this blog was meant to inform other parents, so I feel that keeping those stories to myself isn't fair. This is why I'm launching the series: Overcoming Your Tiny Obstacles.

I would like to ask you, yes, you, the mother or father of a child with OMA and/or severe developmental delays, and I also want to ask you, the teenager or adult who has/had any of these conditions, to share your story with us. I would like you to use this platform to share your story.

To do so, I came up with a format, to have some sort of continuity and to make sure we get the most basic information from everyone. I will ask you to please follow the format described below as much as possible, and to send it to me.

1. Introduction - 1 paragraph. Begin by mentioning whether you are a mother of, grandparent of... or your are the one with OMA/developmental delays. Include your child's/your name, or, if you prefer to remain anonymous, you can use a nickname. I do ask, however, that you include the country and state/region you live in. Tell us what's the medical diagnosis.
2. Background. 1-2 paragraphs. Tell us how and when (age) did you find out about it. Tell us what type of testings you got done, and the findings in regard to the causes, if you know them. Let us know if any of your health issues also run in a sibling or any other member of your family.
3. Issues. 2-4 paragraphs. Tell us all the issues related to the diagnosis. Does your child have speech delay? Hypotonia? How these issues affect your child's development in the house, at school... in his daily life?
4. Eradication. 2-4 paragraphs. Tell us what are you doing to ease the symptoms. Do you take/took therapies? Have had any surgery? What specialists have you visited? Vitamins/supplements? What has worked for you and what hasn't? Has any of symptoms disappear or has become less severe on its own as your child grows?
5. Conclusion. 1-2 paragraphs. Anything else you want to add.

I hope you take a moment to share your story. Use this forum to let us know how you are helping your child, or to tell us how you are doing after having any of these medical conditions. Ocular Motor Apraxia is a rare disorder, so we need to use tools like this to connect with others in our same situation, and to inform those who are looking for answers to something that the medical community knows so little about.

We can't wait to hear from you.

Is it possible to overcome Ocular Motor Apraxia?

I have to start by saying that Patrick's abnormal eye movement wasn't severe. But it was noticeable. And it was often. When the eye doctor saw him for first time, Patrick was about 11 months old. I still remember that appointment very well. One single item moved in front of Patrick from left to right, at a slow speed, and Patrick's eye couldn't follow it properly. The doctor knew immediately: This is called Ocular Motor Apraxia. Patrick has Joubert Syndrome. He suggested to see him back a year later to check on his vision.

Weeks later we saw a Neurologist, who requested an MRI, which showed Patrick's brain didn't have the "tooth" sign, hence he didn't have Joubert. Ever since, the only diagnosis we have is "underdeveloped cerebellar vermis" which can cause speech delay, balance and coordination issues, and the abnormal eye movement among other things. We have also been told that there is no surgery, medicine or anything that could possible cure the brain abnormality, and the only way to help our son is to address each of the developmental delays we may encounter along the way. But, what about the eyes? Well, we were told he wouldn't completely overcome it, but he could learn to manage it as he grew older, hopefully by the time he became a middle school age child.

We were told all that.
Patrick showed us otherwise.

Ready for school

I made myself educated in OMA, but, as most parents of kids with rare conditions, we have to follow our instincts on most things as it's very difficult to find information or to even get it from the doctors. He still can't talk, and back then he was only a baby incapable of explaining what he felt and how, so I had to guess. I also learned to read my son's body. Very soon I figured out that his abnormal eye movement was even more noticeable when he was tired, so I made sure he slept well during naps and overnight. It helped. The more I was reading articles and his very own body, I began to do other things, which I have been sharing since I began my blogging journey.

Every now and then I would check on his eye movements, by performing the same simple test the doctor did at his office. As the months were going by, I had to speed up the movement of the objects, because he stopped having problems with the slower ones. Was he getting better, that fast? I didn't want to get too excited just yet. Friends and family also would tell me that it seemed like he was getting better. The first time I took him to Mexico, my family found out about his OMA. Seven months later we went back, and they all told me how less noticeable it was. You seemed too worried last time you were here, and look, he is fine now! Were they just trying to make me feel better?

One day I sat down to pay close attention to Patrick's eye movement while he was playing with his little brother. He was playing to throw the ball and make a basket, something he enjoys doing despite of being told by the doctor how uncomfortable he would be with such activities. I hardly noticed the eye delay throughout the whole time. With the incredible yet apparent progress, and having Patrick just turned 3, I figured it was time to see again the eye doctor. I was very curious to see what he had to say in regards to his Joubert Syndrome, since it was him the one who assured us that was what he had.

Favorite game at ChuckEcheese? Throwing balls!

Once at the doctor, Patrick was very shy but cooperative. One object, left to right. No problem. Next object, faster, right to left. No problem. The doctor had to do it several times, faster and faster, to eventually catch the delay. The doctor turned to his computer to take a second look at the impressions he wrote down on the first visit 2 years ago. The doctor couldn't believe his eyes (no pun intended) -the fast improvement was obvious. That's when I started asking him about why he believed that Patrick had Joubert Syndrome despite the neurologist saying otherwise. He said the neurologist makes a diagnosis based on the readings of an MRI, whereas he makes a diagnosis based on the symptoms. According to the symptoms Patrick had back then, he had Joubert Syndrome. He acknowledged how doctors know very little about this rare condition, so he said most of them categorize them all under Joubert Syndrome. Like with any other health condition, there is a spectrum... and we believe some kids are more severely affected, some kids less.

Then he took another look at Patrick and how well he was performing the tests. We told him about his speech delay but that he has been walking and running very well, and developing -slower than most kids, but otherwise well. He took a quick look at his medical records, and saw that his kidney tests (a common issue in JS) and other tests came back all perfect. He then realized it can't all be Joubert Syndrome, as it would be too silly to say Patrick just happens to be in the lowest end of that spectrum. We told him about the study UW is doing and that we have decided to participate. He said hopefully they will be able to tell us the name of whatever rare condition Patrick has. He was very happy we were cooperating in these type of things, and asks us to share the results with him whenever we got them back.

At the end of the appointment, he expressed again how amazed he was to see how quickly Patrick had progressed. I needed to hear that. I have been hearing it from my husband, from friends, and I have even noticed it, but I needed the specialist telling me that he has progressed so quickly it feels like a miracle. Patrick is doing so well I don't have to see him again, unless, of course, there is regress... But, he is doing unbelievable well. Whatever it's you are doing, just keep doing it.

I will keep praying. And hoping. And loving him unconditionally, because that's all I have been really doing.

Happy New Year dear friends and family.

Patrick made a friend with OMA

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 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.

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.

Ocular Motor Apraxia Research by UW

A couple weeks ago I received an email from a person who came across my blog, who has a child with OMA and happens to live near where I live. Actually, our kids have even visited the same doctors! The email exchange has been really helpful to me so far, as the woman was kind enough to let me know about a facebook group for people with Ocular Motor Apraxia, and mentioned to me a research on Joubert Syndrome that she is participating on.

The Hindbrain Malformation Research Program, is performed by the Department of Pediatrics in the University of Washington, and they are currently receiving cases from people to examine. As I mentioned in one of my earlier posts, Patrick was originally diagnosed with Joubert Syndrome by his Pediatric Neuro-Ophthalmologist, but after the MRI was performed, the Neurologist ruled out Joubert Syndrome. This study goes beyond cases of JS, reaching to brain malformations like in the Cerebellar Vermis, so I have contacted UW about Patrick. They are requesting his MRI from Children's Hospital and after reviewing it, they will let me know if Patrick qualifies to participate in the Research.

I believe I have mentioned a few times before how fascinated I'm about the brain and the way it works, so anything, anything they are able to tell me after reviewing Patrick's MRI I know it will be so helpful I can hardly wait. This also means that if Patrick is found eligible, we will be contributing in the research, helping doctors to get closer to the answers people like us have been asking for a very long time.

If your child or you have OMA, or have had an MRI performed, with the results indicating any type of brain malformation, I encourage you to contact UW about participating in the research. One of the most frustrating things about Patrick's condition is that there is so little information about it. OMA is a rare disorder, there aren't many people out there with OMA, and so not much research has been performed. But OMA exists and there are thousands of people in the planet trying to find answers to their many questions. If this research can help to answer even a couple of those questions, I say it will be already worth it. But this research can't be done without your help.

My communication with UW has been very smooth so far, and they are very prompt to respond, so at the very least, I encourage you to contact them if you would like to find out more about the research. I will keep everyone posted about Patrick's eligibility and what UW tells me. Let me know if you participate!