The importance of play dates and outings

I joined the mom's group at my Church right around the time we found out about Patrick's Oculomotor Apraxia. They have weekly meetings, but after the holidays, Patrick began to take his physical therapies, which were set for the same day (and time) that the moms met, so I was able to attend only twice a month.

But then it wasn't fun to attend.

Patrick couldn't play with the other kids. He was too scared of them. Imagine a room with 10+ kids running around, being loud and playing with several toys moving from place to place, at a fast speed while the only thing that Patrick could do was to sit next to me and play with whatever I placed within his reach.

One day the moms suggested we should meet at the RECenter. Unfortunately they met on a day that Patrick had physical therapy so I couldn't attend, but I told my husband we should take him that weekend. I was so excited about that outing because they have a spraygound and Patrick loves playing with water so much.

But then it wasn't fun to be there.

All the kids were walking around, but mine couldn't. As soon as I sat him in one spot, he didn't move. He seemed happy to play with the water, but I wasn't. I wanted him to chase other kids, to move from spot to spot and enjoy all what the sprayground had to offer. I left him there for few minutes and then I tried to move him to a different spot, but he misunderstood that with "time to leave" so he started to scream and cry, so I left him there. And he stayed there all the time, ALL the time.

Patrick's very own spot at the sprayground. 

One day, Patrick's physical therapist said Patrick needed to go to the park often. I wasn't used to taking him to the park. The thing is, Patrick had been in a few parks before, when he was younger, we took him a few times and we put him in the swing. Once he got older, old enough to run around the park, we took him again.

But then we didn't enjoy the park.

He was old enough to run around, but he wasn't running. Or walking. Or climbing on anything. Or even standing. So we bought him a swing. And a slide. He was able to have a tiny park at home, that he could enjoy at his own peace. Taking him to public places where other kids his age were doing things he couldn't do wasn't fun for me, because I figured it had to be frustrating for him to see the other kids doing things he couldn't do.

The swing at home

Slide at home. We had to placed him there.

Was it always going to be like that? What if he could never walk? How could I comfort him every time he wanted, desired, wished, to do something, but he just couldn't, while the other kids could and would? Were other kids going to make fun of him? How could I protect him from them? What would happen when he would become completely aware of his limitations and disabilities? Would he cry, too?

But the therapist insisted.

And so I had to suck it up and had to keep taking him to the moms group. And to the sprayground. And to the park.

And she was right.

Soon after, Patrick began to improve his muscle tone, and it happened fast. Being around other kids made him want to do things, so his muscles kept getting stronger as he tried to do new things. He was imitatating other kids, and it was wonderful. Eventually he stopped crying at the moms group. Eventually he started climbing on the slide. Eventually he started to walk around the sprayground. The more Patrick was spending time with other kids, the more he started to improve.

Patrick wanted to be out there and he needed to be there, with other kids, so he could socialize, and learn, and imitate, and explore, and play... and be happy! Just like the other kids were. My boy just needed exposure and time. Time to learn from the other kids and time to practice.

Patrick at the Sprayground having some fun.

  

Patrick saw another kid doing this earlier, so he did it too!

  

At the moms group. Not scared of any kids anymore!

Climbing, climbing, climbing. Yes! He loves the park!

And that's the importance of play dates and outings.

October 2012 recap

I'm trying to use this Blog to talk mostly about Hypotonia and Oculomotor Apraxia. However, I understand that some of my readers are just friends and family members that don't have a child with any of those conditions, but that occasionally read the blog just to see what is Patrick (and the family) up to. So I have decided to start writing a "recap" with the highlights of each month. Here is what happened in October:

Hypotonia = Happiness?

Patrick is happy like most (if not all) the kids I personally know, so nothing to be amazed about it here. He didn't enjoy much to be around toddlers, but he would get along very well with people that were on his same speed. I think most parents get to hear from other people that our children are "good", "smart", "cute", "big", and "happy" kids. But I not only get to hear that about Patrick, but also, people constantly comment with amusement, about his very own personality, stating they haven't met a kid so "content, laid back, warm, smiley, sweet and easy going" as Patrick is.

Patrick had just met his auntie from Mexico

Meeting our friends from Florida for first time

1st time meeting great auntie!

Even then, I always thought this was the case for most kids. But then as I started reading blogs and forums about children with hypotonia, one thing that every parent always said about their daughter or son was: "She/he is always happy, the happiest, laid back kid I know". Most of them, had 3, 4, 5 children, and somehow, of all their children, the one with hypotonia seemed to be the happiest one. So, if there is something special about their condition, that makes them more content, laid back, warm, smiley, sweet and easy going than "normal" kids, what is it?

So here I'm trying to come up with an answer. Below are some thoughts.

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.

What is Oculomotor Apraxia?

Congenital Ocular Motor Apraxia or Oculomotor Apraxia (OMA) is a rare disorder where the person is unable to move the eyes smoothly to follow objects horizontally.

Still confused?

Think of a woman passing by in front of you. The person is walking from left to right and you follow her with your eyes, but don't move your head! Just move your eyes from left to right slowly, following the person walking. Usually people can do this without any problem. People with Oculomotor Apraxia can't. Their eyes will follow the person, but couple seconds later the eyes jerk, making them lose sight of her, having to move their heads to try to catch up to where she is now.

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.