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

Our website (www.omapraxia.com - you may access it as well by typing www.ocularmotorapraxia.org) 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!

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:

Pros: 

• 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.

Cons: 

• 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.

Pros: 

• 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. 

Cons:

• 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.

Homeschool 

Pros:

• 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.

Cons:

• 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.

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!