Could I have prevented Patrick's health issues?

My husband and I had been married for a year and a half when we found out we were pregnant. I told him the news on his 30th birthday and we couldn't be happier.

When I had my first OB visit, I was asked to fill out a form that had specific questions about my lifestyle and background. Do you smoke? Do you drink? Do you exercise? What's your race? Marital Status? Age? Number of Pregnancies? Miscarriages? And then a long list of illnesses to which I had to write whether we or any member of our families ever had.

Raising a child with a disability

Is Patrick a "special needs" child or a child with a disability?

I truly don't know. I guess I could say he has a disability in the eyes, because he can't follow well fast moving objects. I guess I could say he has a disadvantage in his muscles, because they are not as strong as other kids'. I guess I could say he is a special needs child, because, well, he requires some things that other kids don't, like AFO's, and therapies, and constant evaluations and so forth.

But then it just doesn't feel right to compare my son to a child that has some type of syndrome, or severe physical, cognitive, or developmental delay. It's not fair to the other moms of these children to compare what I have to go through to what they have to go through. You see, I have it easy compared to them. And Patrick has it easy compared to those children. He gets to take physical therapies, but just to strengthen his muscles, because he can do physical stuff. And he takes speech therapies, but just to get him up to speed, because he can talk. He needs AFO's for his feet, but just to give him support, because he can walk (and AFOs are like getting orthodontic braces, really) And he has this rare disorder called Oculomotor Apraxia, but, you know, he isn't blind.

So if Patrick falls into a special category, I don't know which one would be the appropriate one. In the meantime, I wanted to share this beautiful explanation I read some time ago of what is to have a child with a disability:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

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: