T-ball 2013 The good, the bad and the weird

Alvin's first t-ball season is officially now over and its such a relief.

Over all I would consider the season a success for him. It started out in April which in Washington means the cold weather is still hanging around and the first few practices were quite cold. Alvin was normally the only kid in shorts (because we couldn't manage to get him to wear anything else!) and never complained about the cold.

Making sure he is in the right place

Alvin started off as awkward as ever. He was in a group of kids he didn't know and tended to not try to engage them. During warm ups instead of throwing the ball with other kids he preferred to go out to the outfield and pretend to pitch like a pro. 

The first few rounds of batting were also rough. The combination of hydrocephalus and autism make hand eye coordination really tough, so swinging a bat to hit a small ball was quite a challenge. There was one practice that I remember specifically that he missed the ball 6 or 7 times. The kids on the team started talking and snickering a little but he was determined as ever to do it.

Overtime he gradually started catching on. He started to throw, not like a major league pitcher every time but more like a normal player. When he couldn't figure out how to stop a ground ball with his glove he made up his own way with his foot.

Batting though was always fun for him during games. Every single time he walked up to the plate and did a routine to get ready just like the pros. The funny thing is when he did it all the way through he was more able to hit the ball. When the coaches stopped him from doing it then he had issues making contact.

Playing first base

The highlight of the season though was the last game. As I said due to the combination of hydro and autism hand eye coordination is rough. Well the kids had been working on hitting coach pitch balls for a couple of weeks and Alvin hadn't had much success. The last game of the season Alvin did the unexpected. On his second pitch from his coach he acts like he is going to bunt then hits it! The coach was shocked and all the kids were cheering. The next at bat the same thing happened and he was able to make contact and run to first base again. The coach later told me that once the other kids saw Alvin hit the ball every single one got a hit when they went up.

So the question now is, will we do it again? Right now, I am saying maybe. There is a lot he can learn by being around other kids his age. He is thrown into it and with very little adult help is slowly pushed to interact with other kids his age. He is still very shy and anxious but every little bit of social interaction lessons are worth it.

Team picture

End of the year party

1 year later

April is Autism awareness month and yet for me this week all I can think about hydrocephalus.

One year ago this week we met with a neurologist who showed us Alvin's MRI scan and told us about the cyst in his brain. He said not to worry but we would be referred to a neurosurgeon to see if surgery was needed on the cyst or not.

Two days later we got the call from neurosurgery at Seattle Children's Hospital neurosurgery department saying that he actually had hydrocephalus and that he would probably need surgery the next day.

I remember distinctly the day we heard the words hydrocephalus. The rest of the day and night W and I spent hours  researching on line what the treatment options were and trying to get in our heads what was going on.

On 4/20/12 we met with his surgeon Dr. Lee and started on this journey. She went through the options with us and suggested an ETV (endoscopic third ventriculostomy) instead of a shunt to treat his hydrocephalus. She said he may need a shunt later in life, but with a high failure rate, if we could do the ETV and it work we would have a better overall outcome for him. The news of the surgery followed a flurry of activity of an eye exam to be sure his optic nerve wasn't compressed then signing forms and prepping for surgery.

On 4/20/13 Alvin will play in his first tee ball game. While some parents will be there and hoping that their kids make a good play or hit the ball into the outfield, our thoughts will be in a different place. We won't be concerned with the things that other parents are worried about. Instead the thoughts of how far he has come in a year will be more on our minds.

One year ago he was having major surgery to alleviate the pressure in his brain. One year ago he was in the ICU and our world had just been turned upsidedown. The last year hasn't been easy. With a site infection and numerous scares from his inability to communicate have kept us on our toes. Both W and I are constantly on the lookout for the signs that things are going wrong.

Now one year later he is playing a game he loves with normal kids. He amazes me all the time at how far he has come in the past year, but right now it hits the hardest.