Ocular Motor Apraxia Brochure

Oculomotor Apraxia has a brochure!!

The brochure contains a great overview about the condition, the resources available to us, and it includes great comments/advises from parents and people living with OMA. Whether you choose to get the free PDF version and print it at home, or to order professionally printed copies, I strongly encourage you to get enough copies to share with your pediatrician, therapists, teachers and close friends and family.

Also, please ask your child's neurologist/ophthalmologist to get copies so that his practice can give them out to future OMA patients. We all remember how scary it was the first time we heard OMA at the doctor's office, and the little information that was given to us about it. Now this brochure will help other parents to get some more information at their very first ophthalmologist/neurologist visit, and to feel welcomed into our international OMA community.

To get the brochure, please visit our website at: http://www.ocularmotorapraxia.org/brochure.html

Enjoy!

PS - All the photos on the brochure are from people living with OMA from different parts of the world =)

Ocular Motor (Oculomotor) Apraxia Website

"...We still imagine, daydream, and visualize our desires and many of those imaginings become real..."

That's a quote from my mother-in-law, who wrote it couple days ago on the last Ezine of the Napoleon Hill Foundation. It's rather fitting that she is writing about belief, applied faith and visualization, just as I'm ready to see the product of my very own applied faith and vision. A project that I hinted about couple months ago. A project that is so dear to me mostly because of whom I'm doing it for.

When we began our journey of having a child with OMA, we realized that whenever we had a question, we would hit a wall. There was barely any information about OMA on the internet, let alone any books or other resources about it. Doctors? Not much help either. In their defense, OMA is a fairly new discovered rare condition, and not much research or clinical studies have been performed to document the few adults living with OMA today.

We live in United States and my son is a patient at one of the best hospitals in the country. If I couldn't find or access information about OMA, I knew other parents had to be in the same situation, with the same questions I had, with the same worries I had. This is why I began blogging couple years ago, sharing everything I knew about OMA, from the little I could gather from doctors, to the many experiences we were living by raising our son Patrick.

I have talked before about a closed Facebook group with more than 400 members from all over the world, who are either parents of children with OMA, or adults living with OMA. This is such a great resource that it's unfortunate that there are many people out there that don't have a Facebook account and so they will never be able to join it. There are others that have Facebook accounts, but our searches never led us to this closed group, which is what happened to me for couple years, and which is probably what happens to the people that never come across this blog.

What is more unfortunate of it all, is that there are not medical professionals, on this blog, or the Facebook group, or anywhere else, reading our questions, hearing our concerns or giving us advice. There are no experts anywhere that can see that we are families wondering what to expect and what we should be doing to best help our children or ourselves with OMA. There are no institutions, policy makers or researches, that can see that there are hundreds of families in great need of more studies being done in regards to OMA, and that we are willing and ready to help them out, because we know that by doing so we are helping ourselves. Nobody can see us, or hear us, or read us aside from ourselves.

This is why I have been working tirelessly the past couple of months to create a public website. These months can perfectly be described by this quote my mother sent to me recently:

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened" Matthew 7:7-8

I have been asking a lot for the past two months.

I have been reaching out to doctors, researchers and Institutes asking them for help to share with me any findings on OMA so that I could put it up on the website. I have been asking for individuals with OMA or parenting a child with OMA, who were willing to join my adventure and make this website real. I have been asking my husband to cook every day this past two weeks and watch our children more than the usual so I could focus on the website. I have been asking friends and family to buy jewelry from a dear friend, who kindly offered to donate a percentage of those sales to help me pay for website expenses and any other related projects. I have been asking God for his blessing and guidance every step of the way.

I asked and I received.

We needed to have a place, where to put all the important information about OMA, so that people would get the answers to the very basic questions that come to our minds when we first hear about this rare condition. We have that place today.

We needed a space, that served as an international network for all the people affected by OMA around the world to be able to connect with each other. From parent bloggers, to the great Facebook group, to adults living with OMA waiting for people to ask them questions. We have that space today.

We needed a page, where people could find gathered all the studies and reports done about OMA, that until now have been scattered all over the web. We have that page today.

We needed a source, where people could find tips that would help us know how to better raise our children with OMA. A place where adults with OMA would give us suggestions about practicing sports, going to college, getting a job, and even driving a car with such rare eye condition. We have this source today.

We needed a database, where people could find doctors who were familiar with OMA. Many people in many countries struggle finding a doctor who can give them a proper diagnosis, or answer basic question about this condition. We have that database today.

We needed a platform, where we could list all the medical community that are helping us with our cause, not only to thank them for their help but also to motivate other institutions, researchers, government, non profit and private organizations to join our cause. We have that platform today.

We needed a project, where the individuals who were eager to do something about OMA, were able to invest their time, passion and skills to actually do it. We needed to have their faces and their stories listed, so that other people that were ever interested in doing something about OMA, got inspired to take action as well. We have that project today.

We needed that and much more. And this is why OcularMotorApraxia.org exists today.

There is still a lot more work to do, not only to include all the information still missing on the website, but to tackle other projects that I'm sure will be born because of this platform we have created. It's great to see what we can accomplish, when we combine the people, and the efforts, and the time, and the skills, and the knowledge, and the mental attitude, and the faith. It's great to see what we can accomplish, when we have a major purpose driven by emotions and motives so strong and so meaningful to us. I did it because of my son, for my son, and for all the children, the parents and the adults with OMA who share the same journey my family does. I know those who have joined me have done it for the exact same reasons, too.

"...We still imagine, daydream, and visualize our desires and many of those imaginings become real..."

Indeed they do.

What do you imagine? What do you daydream? What do you visualize?

Which of these desires are you making real?

Whatever the mind can conceive and believe, the mind can achieve

I have written a number of posts where I've talked about all the challenges that we face dealing with our son's significant developmental delays. Keeping a positive mental attitude has been the greatest aid in keeping us going and keeping us hopeful of a brighter tomorrow.

I have been somewhat involved with the Napoleon Hill Foundation for a few years now, but it wasn't until I wrote my last post on October, that I realized that many of Napoleon Hill's keys to success are being constantly implemented on my family's life. As I wrote about the difficulties my son had matching the skills of his peers -and how I used to get sad and feel self-pity thinking I had in front of me a situation I could not control; and how, I slowly began to overcome my doubts and started to believe more in my son, in God, and all the resources we had available to us- I realized how much Napoleon Hill's philosophy was helping me help my son.

Coincidentally, for this 2015, the Napoleon Hill Foundation is writing on their weekly Ezine children stories (literature) that relate to Napoleon Hill's keys to Success. This was to me, another "sign" that the philosophy can very well be applied to children, to children like mine. I wanted more of that food. I wanted to learn more about the philosophy, and I wanted to become a lot more disciplined, too. You see, I have so many ideas to help out my son and many other parents around world, but I have struggled putting my ideas to work. Procrastination and not having a set schedule to organize my everyday life was getting the best of me, so looking for help I decided to start a Distance Learning Course with the Napoleon Hill Foundation.

The first week, we had to decide on our Major Definite Purpose. I knew what it was, but the necessary steps to accomplish it were vague. I never put too much thought into it, let alone write about it. But this time, the course required that I explained it, and by writing down my purpose and my plan to accomplish it, it became more clear. Realizing all the work and time required to accomplish my goal, it became clear to me that if I were to continue the way I had, I wouldn't get too far, or it would take me longer.

Like I said, I'm not as productive when I don't have schedules/deadlines, so I had to start there. Who says stay-at-home moms don't need schedules? And by that, I don't mean just writing down the Pediatrician appointments, school meetings, soccer practice... I mean, having a set schedule, from the moment I wake up, to the moment I go to bed. From the weekly time I have to set out to work on my blog, to read, to spend just in myself, to the time I need to spend sitting down (or running around) with my children and forget about everything else. From the time I need to spend doing house chores, groceries and cook, to the doctor and therapists appointments, and to the time I have to invest to accomplish my Major Definite Purpose. Of course there is time for improvisation, too -that free time where nothing is scheduled and I can just be spontaneous and do what I want... or what is needed.

Kids like Patrick, as it also happens with kids who have Autism, benefit significantly from schedules. As a matter of fact, not having a schedule on their lives makes them uneasy and uncooperative. I have known this for awhile but I don't know why on earth it took me this long to do something about it. But we are on tract now. I'm wearing the Positive Mental Attitude hat, and this time I'm actually working towards my goal, too. You will hear from me more often, and you will see good things are coming for the Ocular Motor Apraxia community. If you want to get involved, just send me an email, because I will need help! I'm committed. My son is my motive, and I'm going to make it happen, because like Napoleon Hill said: Whatever the mind can conceive and believe, the mind can achieve.

Cheers to a better, brighter and healthier 2015!

To the new parents of kids with special needs

A couple of months ago, I took Patrick and Robbie to the softroom at the Lee RECenter. The place was empty and the kids were happy to have the whole room to themselves. Shortly after we arrived, a mother came with her son, accompanied by who I think was the grandmother. The little boy must have been around 1 year old, judging by his height. He was very skinny, however, making him look significantly younger, and looking also quite fragile. Mom and grandma were trying to help him stand with support. The softroom is such a great place for little ones with low muscle tone. I know it was great for Patrick. They were also keeping him on his belly as if trying to make him crawl. I remembered those days. The boy was wearing prescription glasses. I'm always curious about little kids that wear glasses, because Patrick has an eye disorder, so I feel like asking all sorts of questions, but I never ask.

It was obvious that the baby boy had some sort of health condition causing his fragile appearance, his low muscle tone, and the eye problem. When I see mothers of kids with disabilities, I feel like saying hi. I feel like telling them that I have one of my own. I want to exchange tips on how to help our little ones. But granted, I never say hi. I just don't know how they will react. This time, I thought, I should give it a try. There was nobody else in the softroom but us, and they seemed like nice ladies. I was getting ready to start a conversation, when the baby, who was on his belly, started to throw up. The mother was all nervous, probably worried that I would mind that the boy just threw up on an area where my kids were playing without shoes. The grandmother immediately rushed to help her and hold the baby while the mother quickly cleaned up. And then I saw it. That face that just someone who has been through it, is able to read: I saw her trying to keep it together, when all she wanted to do was to cry. They left immediately after. They had spent a total of five, maybe ten minutes in there, but once that happened, she just couldn't be there anymore.

I was her once.

It often happened when I was new to this whole thing of having a child that is less than perfect healthy wise. Seeing kids that were Patrick's age running around in the playground while he was sitting there not being able to move would just break my heart. All sorts of things would go through my mind and heart at that point: Will he ever walk? Will he be a sad boy when he becomes aware of his disabilities? Feeling ready to burst in tears, I would just pick up Patrick and leave the place.

I'm glad I'm over that phase. It's very good for me to stay around kids his age that are able to do 10 thousand more things than Patrick is able to do, and it's even better for Patrick to be around them, so that little by little he learns to affront his obstacles. He learns significantly faster by observing and imitating other kids than from me or the therapists teaching him. But the fact that now we are happy to "stay" socializing with healthy kids, trying to do the things they are doing, doesn't mean there aren't times when I feel sad when he can't do something. It's less often, but it happens. Actually, it happened very recently:

We went for the first time to the KidzNMotion in Woodbridge, VA. There are all sort of bounce houses, giant slides and some other things for kids of all ages to play with. There was one gigantic slide where Patrick saw both older and younger kids having fun, so he wanted to try it. In order to go down the slide, first you had to go up on narrow inflatable stairs, and as you can imagine, it wasn't as easy as he had thought. I figured it would require more time for him than it takes other kids to go up, so I waited until it wasn't crowded to have him on there. I decided I would take a video of him going up, to share it on this blog when talking about what are the fun things kids can do that would help improve their coordination, balance and low tone issues. Oh boy I never thought I would actually share this video on a post talking, instead, about feeling ridiculously helpless at my son's challenges. The first video shows Patrick the very first time he tried.

He kept trying a few more times, before understanding the way he had to coordinate his legs and arms in order to be able to climb. When I saw that he had made quite the progress, and that he had the intention of going all the way up, I decided to take a video again, knowing it would be the video to share about the work out kids with low muscle tone get on these things, and how much fun it is because after the work out, they get to go down the slide. Not once I thought that Patrick wouldn't make it that far.

There are so many things you can see on that video. First, Patrick gets intimidated by another child who wants to go up. He is aware that he is too slow and by her being behind him, he feels pressured. So he decides to give up even before trying. Next, you see him watching the girl going down the slide, and remembering that that's the goal, he decides to try again. For a little while, he does pretty well going up, all things considered. Then, there is that point where he gets stuck. He is so close, so close to the end, but he just doesn't have the physical strength and ability to finish the job. He was about to cry, and kept turning his head at me like trying to get some help. Lastly, he gives up, and comes back down, letting me know it was too "big", and trying to forget about the incident, he moves on to other things.

One thing you don't see in the video: Me, trying to keep myself together to not burst in tears. I couldn't even utter a single word to encourage him to keep going. Seeing him trying so hard, so hard to hang in there and finish that last couple of steps, and then realizing that that's just not going to happen, made me so angry with life, and so sad. Actually, I think I shred a few tears, that were quickly wiped off because I didn't want to feel embarrassed of other people seeing me, including Patrick. There are things that Robbie can't do, and doesn't make me sad at all... But with Patrick is different. I know he has a rare health condition, so when things like this happen, I'm reminded of that. These challenges remind me that often times, Patrick won't be physically able to do something right away because of the way he was born, and this makes me sad. How couldn't it? He is my sweet son.

Just like the mom at the softroom, I could have just left the place. But I have done that enough. It's been a couple of years now of dealing with this, that leaving is not an option anymore. So I took off my shoes and decided to help him myself. We found a smaller slide, and I figured we should start there. Then a bigger one. Then we found one that was almost as big as the one that he couldn't go on, and although he was hesitant at first to give it a try, I encouraged him and let him know we had all the time in the world to try. Kids like Patrick need extra time to learn and do things. Then I let him do it all by himself, and he did it. He was so full with joy I felt like crying again. Happy tears this time, of course. He had a blast on that slide and he was happy that mommy and little brother were having fun there, too. Maybe next time we go there, we will give the big slide another try. Maybe he still won't be able to climb it, but that's OK, we know there are plenty other ones that he CAN do, and we know, too, that with enough practice, one day he will be able to climb that slide. He will overcome the obstacles. I know that now.

As the time goes by, you will learn from your mistakes. Eventually, you will get thicker skin and discover that you can actually endure whatever comes your way. You will meet other parents going through the same path you are. Seeing those parents hanging in there is comforting and encouraging. And when our kids finally accomplish something, as little as it may seem to others, the joy you will feel won't simply compare. Sometimes our special kids need more time and patience, than our help. Sometimes they need more trust from us. If they know we believe in them, they will believe in themselves. My Patrick is the happiest when he helps me carry the groceries from the car. He struggles a little trying to not lose balance while holding the small bag of food, but he is happy to help me, because, you see, his biggest need is to know that he is needed. That I need him. All we want is for our kids to be happy, right? Well, nothing will give them more joy in the world than the many ways you can show your love for them.

If you are a new parent of a child with developmental delays, and to the mother who left the softroom feeling helpless and sad, all I want to say is, it gets better. I promise you.

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.

I would have never guessed it!

A few months ago, a friend from college came to USA on a tour that included New York and Washington, DC. Since I moved to this country 7 years ago, I rarely get to see friends from my hometown or from college, so I was super excited to see her while she was in town. We were able to spend almost a whole day together. We took her to see the monuments (my husband loves giving a monument tour to friends and family), I brought her to my house and we had lunch nearby, and we also enjoyed a stroll with the kids in a wonderful evening in Washington, DC. It was so much fun to see an old friend, but it was also a very comforting visit, here is why:

We studied Communications together, we were in the same class for 4 years. Anyone you ask, they will tell you she was one of the smartest girls in the class. She had briefly lived in United States, so she speaks both English and Spanish. She lost her mother at a young age, but if anything, it gives the impression that such experience made her acquire a "motherly" attitude towards her friends: always looking out for everyone, and always willing to give you a hand. She is a good speaker. Never afraid to stand in front of an audience and talk, and she always has something to say, as she is a very well informed woman. She loves to travel around the world, and enjoys her current job as wedding planner at the Palace Resort in Cancun, Mexico. I was very impressed to hear the jobs she has held since she left college, and overall I could say she is having a very successful and happy life.

She asked me if I was planning on teaching my kids both English and Spanish, to what I said yes, and I added about how we put a temporary hold on Patrick, because he has speech delay, so I'm mostly interested in getting him to say basic things in our home's primary language (English). Then she said the words I never imagine I would hear from her: I had speech delay when I was a kid.

Then she went on to telling me about her numerous speech therapies and occupational therapies, all the medical appointments, the things she couldn't do as a child, her fine motor skills issues, her development delays... and all her challenges. The more she talked, the more I could relate -or Patrick, for that matter. She was familiar with all the things I told her about him, and I just couldn't believe she was telling me she went through all that herself. She, the girl that has absolutely no problem giving a public speech (and is good at it), the girl who is successful in her Public Relations job providing costumer service in an international arena.

She gave me so much hope. I would have never guessed it. How's it possible that she had so much trouble (medically speaking) growing up when she was a child, but now there is no resemble of it? What developmental delays? I could easily joke (not really) that she was actually way ahead than most in my class. She looks and is perfectly healthy now.

One day, my little boy will be a grown up man, and will tell a friend about his developmental delays and the medical issues he had as a child, and the friend he is talking to, will look straight at him, with a sincere surprised expression in his face and say: I would have never guessed it! I know in my heart this will be possible one day. At moments I felt like I was kind of hoping too much for Patrick and therefore expecting too much from him, but she overcame her obstacles, and the end results are priceless and flawless. Now, more than ever, I'm determined to help Patrick overcome his very own obstacles, because thanks to God they are temporary.

Cheers to you, my dear friend!

Patrick's Oculomotor Apraxia

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.

Cognitive Development

Children's development can be classified in 5 different areas:

1. Gross Motor Skills
2. Fine Motor Skills
3. Feeding Skills
4. Speech Skills
5. Cognitive Skills

Some may also add Sensory Processing Skills (vision, auditory, touch, taste and smell) and Social 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.