Monday, February 29, 2016

Where can I find a doctor who knows about Oculomotor Apraxia?

Our website ( - you may access it as well by typing has a section dedicated to names and contact information of doctors and hospitals who have knowledge of OMA. Recently, we asked our members on our social media to share with us the name of their doctors, and they did! So now we have more than 20 doctors on the list, from around the world, and hopefully the list will keep growing.

I believe one of the reasons why it took longer to diagnose Patrick, was because his regular doctors didn't know anything about OMA. But after my insistence that Patrick wasn't OK, they referred me to a neurologist at Children's National. Luckily, their neurologist knew about OMA, and he immediately referred to us a Pediatric Neuro-ophthalmologist, who has seen many patients with this condition. Even though neither of them were experts on OMA, they knew the important factors, and that made a whole world of difference to us. 

From just having the peace of mind of knowing what your child has, to knowing what the course of action will be in regards to his treatment and prognosis, finding the right doctor is the best thing that can happen to you. It is, when dealing with any medical conditions, and even more so, with RARE medical conditions.

So, take a look at the list. Maybe you will finally find a doctor in your area. Maybe you already have a doctor, and if that's the case, please share his/her name with us. You are so lucky to have found a doctor familiar with OMA, and we hope you share a bit of that luck with many other people affected by OMA.

Happy Leap Day!

Tuesday, February 16, 2016

Homeschool, private school, or public school? That is the question.

Patrick began receiving public services since he was a little over one year old. He received speech, occupational and physical therapy. Once he turned 3, due to his developmental delays he qualified automatically to be enrolled in the public preschool, and since then he has his very own IEP (Individualized Education Program) to learn more about his preschool setting, click here. 

Patrick is 5 now, and it's time to consider kindergarten. These are our options:

Public School:

  • Patrick's IEP states that he qualifies for services from the county. If he continues in the public system, everything that he qualifies for, will be given to him, at no additional cost. That means, speech therapy, occupational therapy, accommodations, and probably a one-on-one aide for a few hours a month to ensure he isn't lagging behind. 
  • There are good chances that Patrick won't be the only one with developmental delays in his class, so he won't feel like he is the only one behind. Also, teachers should be more familiar as to how to work with these children since they may have more experience. 
  • Our taxes are already paying for public school, so no additional cost. The money saved could be used towards private therapies, and to sign him up for a few activities like sports, music or arts and crafts.
  • Many people seem to think that this is the best option for him based on his special needs.
  • Too many students. Patrick has been doing well in a setting of 7 children per class. Public system could mean 30 students or more. 
  • It's the public system. I have heard so many bad things about standardized tests, young children not being able to play enough or have recess, teaching them things that often parents not even agree on, and the list goes on. 
  • More prone to bullying. I'm afraid his self-confidence can be compromised, when other kids his age start picking on him because he can't do what others can, because his speech is not clear and so on. 
CONCLUSION: Patrick has his big IEP meeting in 3 weeks. All my questions shall be answered. After this meeting I should have a better idea about what the public system believes my son needs, and what they could offer in the public system, private school or if I homeschool. 

Private School.

  • Slightly less children than in the public system. 
  • It's Christian based, so he will not only receive your regular school education, but will be also based in the same Christian principles in which we are raising our children. 
  • I have several friends whose children attend this school, and they all say great things about it. 
  • My husband really wants him to go to this school. 
  • It's the most expensive option of the three. 
  • It's likely that only a few of the services in his IEP will be provided at this school. The school may not be able to provide him with all the accommodations he may need.
  • There is an assessment in order to be accepted. Chances are, he will not pass! They gave me a list of all the things he should know (ABCs, counting, colors, shapes, drawing, answer info about him...) and he hardly knows anything!
CONCLUSION: Patrick's assessment is next week. If he doesn't pass, well, they are making the decision for me, leaving me to choose between the other two options. If he passes, however, I would be back to where I'm. This week I'm meeting with a mom who has a child at this school (3 grades up) with Joubert Syndrome, this should give me a better perspective of what this school can offer for my son.


  • It would give him some time to catch up. Patrick seems to improve faster the more he learns to talk. So perhaps, if he has a year off from mainstream school, and we focus on his speech and some extracurricular activities to target his developmental delays, he could be really ready to go mainstream for elementary school.
  • It would give us freedom to choose a variety of activities he enjoys, like swimming, music, cooking, gardening, construction... and we wouldn't be necessarily overwhelming him. Regular kindergarten hours are from 8am to 2:30pm Monday to Friday. All these activities I could sign him up for, however, wouldn't take nearly as much of his time, so he would still be able to take a break and enjoy his childhood playing!
  • I would be in charge of what he learns. I would be able to customize his education, the schedule, etc.
  • Homeschooling is growing fast where we live, with more and more options available. I have many friends who homeschool who can share their tips with me. There are many co-ops, excursion groups, playdates and many other activities for homeschoolers.
  • I'm not sure I could pull it off. I can get disorganized, I may procrastinate, I may have other gazillion things to do and I'm afraid I won't be able to consistently keep up with the homeschooling curriculum and schedule I set when we start.
  • I hear all the time that Patrick does very well in the school setting. When I'm around, or when I'm the one teaching him, he gets very distracted, doesn't try hard enough. Seeing other kids performing certain tasks at school, make him feel like he has to do them as well. At home however, he won't follow instructions or practice enough.
  • I also have a 3 year old! Many of the extracurricular activities for homeschoolers require parent participation, and having also a 3 year old with me would limit my options.
CONCLUSION: I need to put together what the schedule would look like for my son. I need to find the homeschooling resources in my area. For instance, I found something called Classical Conversations, and Skye Chase Co-op, both near me, both Christian, and both sound fantastic. These are once-a-week meetings each, so I need to find additional resources. I must come up with ideas on what to do with Robbie while I'm attending these classes with Patrick. Having a schedule set, a price set and all my options set, I will have a better idea if this is the way to go.


This is where I'm right now. I will update in a couple months once we have made our decision. One thing I know for sure, is that either option we choose, it may end up being only for one year. Then re-evaluate, and see if he needs to move to a different setting.

Tuesday, January 12, 2016

Practice makes perfect!

Patrick is riding a bike!!!!

Ok, it's a toddler bike, with training wheels... but, but, this is such a HUGE milestone! He had a small bike at home, and he just was never able to step on the pedals and ride. Instead, he would place his feet on the floor and sort of walk while sitting on the bike. I know many kids with Oculomotor Apraxia find riding a bike very challenging. We tried so many times to the point that I was sure he would be at least 7 years old before he was able to ride a bike.

Glad he proved me wrong!

The grandparents gave Patrick and Robbie a bike to each as birthday gifts (he turned 5). We visited them over Christmas and New Years, and while the kids were excited with their bikes, as soon as Patrick got on his bike, he began to "walk" with the bike. His dad, his grandpa, his grandma and myself tried teaching him how to use his feet to pedal but it was like he didn't have the coordination nor the strength to do it.

It was cold outside so everyday we went down to the basement to spend a few minutes practicing. I figured if we practiced 5 minutes every day he would get there sooner rather than later. It only took 4 days for him to do it! Then the weather warmed up enough for him to try his recently acquired skills in the backyard, and he was thrilled! I'm so proud of my little guy. When vacation was over and we came back home, we had a couple of not-so-cold days and he rode his bike around the block while we walked the dog. He is so proud of himself and enjoys doing it.

Can't wait for spring so he can ride it more, and maybe he can teach his little brother how to do it!

Practice, practice, practice. That's all it takes.

Happy New Year!

Monday, September 28, 2015

Overcoming Sensory Processing Disorder

Can you overcome sensory processing disorder?

I hope so.

I know it will be a long process, nothing that we will magically overcome in a few weeks or even months, but instead, it will be a journey of years of learning about the way my son's body, brain and emotions operate, and finding the best ways to cope with his sensory processing challenges. He is not quite 5 years old yet, but after a few years of therapies and reading a lot about the subject, we have learned a thing or two, and I would love to share it all with you.

If you want to read about the basics on SPD (what it is, types...), please check out this post I wrote a few months ago on the subject. Also, you may check out this overview on how my son Patrick is specifically affected by SPD (you may find more than a few similarities to your child!)

My son is what in the world of SPD is called a "seeker". This means, his body is constantly looking for physical and vestibular input. He is often licking things (I know, gross!) He loves to chew on his thumbs (not baby sucking, but rather hard-chewing with his molars.) He is often pushing, hugging hard, throwing things, bumping into things. He loves running and can walk for hours. He likes performing physical work (not like I have my toddler/boy working on the yard, but he enjoys helping me vacuuming with a light vacuum and helping me carry the groceries). Enjoys clashing and splashing water like no other kid I know. He sleeps with heavy blankets. He prefers to eat with his hands. He likes to lick things (I know I said that already, but really, it's is that often and drives me that crazy!)

His auditory processing works completely in the opposite way, though. Loud, unexpected noises make him scared and even panicky. He can get a serious panic attack at the bark of a dog or the sound of a fire alarm, not often, but it has happened.

We think we are prepared for the times these will happen again in the future, however, there are times when he will experience certain triggers for the first time that will cause a panic or at the very least a meltdown. Then we will need to learn to manage these new feelings and reactions. When you finally think you have everything under control and your child is doing well for a few months, then there is something new that will remind you that this is something that can't be cured, but can only be controlled, and it will likely take you a good number of years. I'm hopeful that by the time he is a young adult he will know how to cope and respond appropriately to new situations.

But right now he is just a child. And when kids like Patrick get a 'sensory overload' it can get really rough for them, and also for the parents and the people around. In the case of 'seekers', when they get a sensory overload (public places are the most common) they begin to crave more than ever for that physical input. If there is anything around them that they can get their hands on, they will push it, or throw it, or destroy it. They may hit people, and do things that look as if the child is 'misbehaving'. As the caregiver tries to discipline the child and stop the behavior, the sensory overload gets out of control, turning into a complete meltdown for the child (and often, feelings of frustration, helplessness and failure in the parent).

SPD is really serious stuff.

But it can be fun too. At least. you can try to make it fun.

On my next post I will share with you a list of things that we have tried AND have worked. Every child is different and not everything will work for everyone, I know this because we have tried other things that didn't make it to the list simply because they didn't work on my child, even though other parents or experts on the subject raved about them.

My suggestions include things we had to buy, to things we already had but discovered a different use for them. Activities, words, foods and services - all will be explained in the next post. Stay tuned! 

Wednesday, August 19, 2015

Are therapies really important?

Summer is almost over. My husband has been traveling for work for most of the time, so I feel like I haven't been able to do all the summer things I wanted to do with the kids. One of those things was to take them to the $1 movies Regal Cinema offers over the summer. We went only once, granted, it conflicted with Patrick's therapies on Tuesdays, and with mom's group on Wednesdays. Regardless, I felt like I could have made some accommodations to make it work, if only I hadn't been occupied with other things the past couple months. This week was the last week of the Summer movies, so I called to reschedule Patrick's therapy to the afternoon so we could spend the morning at the theater and enjoying a nice lunch afterwards. I introduced the $1 summer movies to a new friend I made recently, who joined us with her daughter, and now they can't wait for next summer to take advantage of the great deal.

After a busy morning, we headed to therapy. We have ran out of the number of therapies allowed by the insurance. We reached the maximum not even half way through the year. We had to reduce Patrick's Occupational and Speech therapies from twice a week to once a week because it would be too much money without the insurance coverage. I got so frustrated, hopeless and helpless days ago after talking to the insurance about the possibility of increasing the limit of therapies allowed. Of course their response was "not possible." My new friend had just asked me this morning if self-pay therapies were expensive, and when I told her how much we were now paying her response made me doubt if it was all worth it. She couldn't believe we were paying that much for only 90 minutes of service a week (1-60 minutes session of OT, 1-30 minutes session of SP).

I began to question it myself. Does he really need the therapies? Can I just get some tips online and from books and teach him myself? What if the improvement I've seen is due only to the fact that he is growing, and not that he is receiving therapies? Will he catch up on his own as he continues to grow?Are we just wasting all these money and our time? Will he regress if we stop the therapies? What should we do? Then we went to therapy, and God found a way to answer my pleas.

Because we rescheduled, Patrick got to see different speech and occupational therapists than the ones he usually sees. It's great to see he doesn't fight going into the sessions anymore, not even with these nice yet unfamiliar young ladies. When it was his turn for OT, the therapist came to take him, and I realized it was the same woman who performed his evaluation 9 months ago. I got back memories of that meeting: He didn't cooperate much. He cried and screamed at some point. He was either hiding behind me or all over the place. He couldn't perform most of the tasks requested. She had to cut the evaluation short because of his lack of cooperation, but she had seen enough. It was obvious that Patrick lagged behind on many areas.

I knew he was better overall now compared to 9 months ago. But I didn't realize how much better until today's session was over and she came to talk to me. Her face could speak for herself. She was in total awe. She said emphatically how much improvement she saw on Patrick. She talked about all the things they did and how surprised she was at the things he could do. He has improved by leaps and bounds... He still got that great aim when throwing things... He is keeping his hands open most of the time... He was able to balance his body very well on the therapy ball... He has gotten so much strength in his muscles... He was very focus in all the activities... He worked so hard..

I had to stop listening and had to think about something else. I distracted myself with the kids around, because I didn't want to cry. It was hard not to. I had that expression when someone is about to cry, I could feel it, and I didn't want to show it. But I know she noticed, and I know it was not the first time she had seen this expression in a parent. After all, we are all there hoping for our kids to get better, and when we hear they do, we rejoice. Therapists must feel good, too, after all, they are the ones helping make these improvements possible.

I was reminded today of how far my son has come, how fast, and how much better he is because of his therapies. There are times when all I see is that gap between him and children his age, that I forget how much far behind he was before, and how much bigger that gap used to be. I had forgotten about the evaluation from 9 months ago, but I'm glad I was coincidentally reminded today about it, when I saw the therapist who performed it. I don't know how much longer will Patrick be receiving therapies. Next year, when our insurance starts covering again his therapies, I don't think we will request to go back to receiving services twice a week. I don't want to overwhelm him. He is just a child, not quite 5 years old yet. But I know we will continue to receive therapies for as long as he needs them and for as long as he enjoys them, and for as long as they continue to help him as they have all this time.

Friday, July 31, 2015

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:


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