Don't you love it when your kids prove you wrong? (In a good way)

Patrick had his first baseball game of the season today. But my nightmare began last week, when he had the first practice.

Patrick had NO idea what to do in the field. How to catch, how to bat, where to throw the ball, WHERE TO RUN! Seriously, he was on first base, and when he had to run to 2nd, he instead ran back to home base. A few kids chuckled, naturally, while everyone else yelled "the other way! Run to 2nd!" All the kids were pretty good on the field, beyond anything I had imagine. Patrick did T-ball last year, and nobody was keeping scores at the games, nobody had a clue what to do, it was all just fun practice and fun time at the games. But, Coach Pitch... a whole other story, and I came to know this only after I signed Patrick up.

I was worried. The weather didn't allow for another practice, so after that first practice for him (he missed the 2 first practices since we were out of town) he went straight to playing his first game. We practiced at home with him, and I got him a bunch of baseball gear to do so. One of the biggest issues, is that he has trouble understanding the game, but to explain this you need basically a whole team to learn and practice the dynamics of the game, so after only one real team practice, my only resort was prayer.

And messaging the coach.

As my husband says, I "went full crazy mom" and messaged the coach the night before. I was worried that at the game Patrick would run the opposite direction again. That he wouldn't hit a single ball with the bat. That he wouldn't catch or even run to try to catch a ball. And if he ever ran and picked up a ball, that he would paralyze (it has happened) not knowing what to do. IF this happens to 5-6 years old in Tee ball, not big deal, but if it happens to 7-8 years old in Coach Pitch... well, you may have to reconsider if this is the right place for your child.

In the message, I told the coach about his learning difficulties and his developmental delays. I told him Patrick loved baseball, but I also understood that the kids would want to win the games and probably were expecting to, considering how good they were. I said if he thought Patrick shouldn't play the first few games until he got better, that I was OK with that. That if he wanted to put him only in positions where his mistakes wouldn't affect the team much, that I was OK with that, too. Whatever he wanted to do, I would be OK with it. I wanted him to know that I was not going to get upset if he didn't get my son in the game. I also asked him for suggestions on how to help Patrick get better.

He gave me a long and wonderful response. He said the kids and parents in the team are great and everyone will do their best to make Patrick feel welcomed and help him improve. He gave us ideas to help him at home and where to take him to batting cages. He also said he would have him in the games "for as long as he is enjoying it and he is safe". To not worry about scores, but about improving and having fun, and that it's all a team effort, not a single person's mistake or win. And if at any point we felt this was not the right place for him, then he would help us get him back to Tee ball or other teams.

I felt much better. Doesn't he have a great coach? I really felt more at peace, even though I was still prepared for the worst. All I really hoped was that he wouldn't be the cause for laughs or blames. That's it. If that's accomplished, I would have called it a successful game.

Well, Patrick played, and he exceeded our expectations. He got a chance to bat 3 times, and the 3 times he was able to move on to the bases! He even scored a run for his team! He does need to learn to run faster, because even though he made it to all the bases, sometimes it happened by luck (ball far away from him). But I'm also OK with a bit of luck. What's a player, any player, without it? And just for the record, I believe his "luck" comes from mommy's prayers 😉

Yes, they keep scores and play by plays in an awesome app. I told you they were serious about it! Also, they have him there by his first name (Patrick is his middle name) in case you are like, who is Timothy?

Seeing that he improved so much from last week's practice to today's game gives me so much hope and makes me so excited. I can't wait to have the family practicing with him again this week, and I can't wait for the other 9 games that he will have this season. My son proved me wrong! And I'm so proud of him. The team lost 11-8, but it was a good game. The first inning was really bad (and that's where the other team got the big advantage), but from then on, they got better and better, unfortunately they didn't get a chance to turn the score around. We will get them next time!

And how can I forget that Patrick made me chuckle during the game, too: The first time he hit and ran to first place, I went into the back of the field and got close to him to remind him to run to second base, and to yell "run! run! run!" when he had to do it. But when I approached him and said "Patrick, when he hits, you have to go to 2nd base, OK?" He slowly turned his head to me and said with a serious face "you can't be here" and looked back to the pitcher 😮😁 So needless to say, from now on I will limit myself to behind the fence and cheer him and his team from there!

Yay for Patrick!

PS - I'm not sure if this is a welcome back to my blog, I know I haven't written in a long time. To be honest I'm not sure how often I will be writing, BUT I do want to write about homeschooling, as some people have asked about it, and that I will do in the next few weeks.

We chose public school this year... but not for next year.

Hello world!

We are still alive, and planning to continue with the blog. I basically took a year off because there were some changes in our family. First, we added a new member! We have a new baby boy who is as cute as he can be. During the pregnancy, my husband got promoted (yay!) but it came with a relocation to another state. In the end we were able to stay in Virginia, but while we thought we were moving, we kept busy trying to downsize, looking for new schools, house... and all what a family relocation entails.

As you may recall, I previously talked about our options for Patrick's school. We were torn between private school, public school, and homeschooling. He didn't pass the test at the private school, so that option was out of the question almost immediately. I kept exploring and evaluating the remaining two options, but when we found out we were moving while being pregnant, we decided to just enroll Patrick in public kindergarten, so that I would have time to deal with everything that was going on at home.

Patrick has a great teacher and really enjoys going to school. There is the occasional morning in which he doesn't want to go to school and cries, but he is perfectly fine and content by the time he arrives at school. He has made new friends and the great thing is that two of them are basically our neighbors, so he gets to play with them sometimes outside of school.

We also took a break from his private speech and occupational therapies. He receives speech and OT at school, although only a fraction of the time of what he used to get privately. The bigger plus from the public school, is that Patrick has an special aid. There are other 4 kids with an IEP in his class, who also receive help from the special aid. She is most of the time in the classroom and takes turns helping out the kids like Patrick.

Now, if you read the post about the school choices, you may remember our idea is to have Patrick repeat kindergarten. So he did his first year of Kindergarten in the public system, and now, for his repeat year, we were hoping he would do it in the private Catholic school by our home. Enrollment time is almost here, so I tried to have him do the school test at home, and sadly, I realized he isn't anywhere ready. It's actually quite the wake up call to realize he didn't improve much during this year at public kindergarten, so, we have decided to finally give a chance to homeschool.

My idea is, among other things, to outsource some of his education, include a special ed a few hours a week at home, restart private therapies, enroll him in sports to target his motor delays... basically, the idea is to give him a completely tailored education. He is a special kid who deserves a special education. I'm glad I have a few months before we start, so that I can gather all the resources and make a plan. I will be happy to share it with you once I have it. The special education program in the public system has failed my Patrick (and many other kids) in different ways. I'm glad we gave it a try, but sad to realize it didn't work. We don't want him to only be able to be in school with other regular kids, we want him to actually LEARN. I may talk in detail about our issues with the special ed system in public school later on, but for now, we are excited to finally help Patrick reach his full potential.

More later!

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!

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!