Taking Pictures of Alex

Here is Alex in Disneyworld. It's unusual for him to pose for the camera. :-) I don't think we'll ever get a good family picture. He tends to scowl when we try.

One thing Alex loves is Star Wars. I was surprised, but excited when he said he wanted to battle darth vader and go through Jedi Training Camp. It involved a stage and being in front of people.

Alex is actually a very good actor and presenter. He is one of the best readers I've ever known, and could perform Shakespeare and bring tears to your eyes. He does like Shakespeare by the way. He read the Usborne Books version last year. I wish they hadn't discontinued it.

And here with Darth

(The pen IS mightier then the Light Saber--Darth signed his hat)

Our first support group

So being April is Autism month, and I'm surrounded by the reminder, hey, your kid is autistic, I figured maybe it was time to get some support. I'd talked a few times with the coordinator, Jan, about the services offered, but never went. I thought about it many times, but "something" always came up... yeah, I know and you know that if you want to do something, you will make it happen.

So I got an email about a meeting. It was in front of me. The date was free. So I made the leap. I didn't take Alex, but Todd went with me.

The meeting was about telling your child about who they are, which I had done a few weeks earlier. By the way, Alex smiles when we talk about it. It doesn't upset or scare him at all. I think it's because I basically told him he is just like all his hero's (Benjamin Franklin, Albert Einstein... I'll find the list and repost it here). So it's not a bad thing. It just is.

Back to Alex. He is still not ready to put himself in a comparative group with others. As far as he knows, he's the only kid in his school (which is totally wrong, there are some, but it's easy to blend in 95% of the time.) Most people don't know Alex has it. And I don't think the kids need to know. If Alex wants to tell them, he can. But it's more important for the teachers.

We watched Parenthood as a group, and I got to observe some of the other kids. There are so many different ways children are. One boy was trying so hard, but I could tell the tapping another person was doing was driving him crazy. Another child wanted to look around, he was soo happy, but the kid behind him did not want to be looked at. The parents were great in how they handled their children, using it as a teaching moment. You wouldn't have guessed that they were frustrated or upset, which will benefit those kids so much.

It felt good meeting with other parents. Many had waited until about the same age to diagnose their asperger child. I felt so much better! I think 10/11 is a turning point because as a parent you know it is now not something that will be outgrown like other things. It's not a maturity "thing" anymore, and needs to be addressed.

But I felt like the most horrible mom since I didn't just have him diagnosed the second teachers were nagging on me about "Your child won't play with others. Your child this. Your child that." But as a parent I always knew it was who Alex is, and he's happy, why try to make him someone he is not and miserable.

We had asked Alex to be tested a few times. Not sure what we were thinking in giving him a choice in the matter, but he was always in the conference, and autism came up a few times. But Alex always said, "I don't need to be tested."  He didn't want a label, and we wanted to respect that. He is wise above his years and we treat him differently in how we parent. He's a very strong individual and I think most other kids could benefit from his self confidence.

Todd and I were very glad we went. It was a good first step for me.

We broke the news....

We mentioned earlier we were not planning on telling Alex. He had refused to talk about it in the past when we had discussed having him tested. "I don't want a label." Todd and I wanted so bad to respect this, but the time was right, so we went ahead and did it.

I think he knows what we were doing, but we never said it directly.

We just got back from Disney World. We were told if we had a letter from his doctor, we could get a special badge. So we talked to him about this letter. He said, "I don't want it." So we let it drop.

The other day he got home from school and said to me, "I had OT today. I got to play with putty." Wow, I thought. He's enjoying it.

I then said, did you know that they think Isaac Newton had Autism. He looked at me, "really?" I asked him if he wanted to know who else, and rattled off a list of famous people who he admires who they think had Autism. Then I said, "It doesn't hold you back, but gives you a different perspective which will help you achieve greatness." OK, maybe not those words, but it sounds good.

He nodded and we left it at that.

Now on to the next chapter....

Destination Imagination

Alex and his team, the Jailbreakers, had their first competition on Saturday. I was out of town, but Todd went up with Alex. He did great, and I think even had a good time. We won't tell anyone. They came in 3rd (out of 3 teams), so they didn't make it to state. But that's OK. Alex was kind of relieved. It's been a lot of work he's not used to doing. He's ready for a break. They learned a ton, and will be even more ready for next year.

I'm very proud of him. :-)

Debbie

OT

I am so tired of being at the school. I've been there at least once or twice a day for the past few days.
I just got another email, they want to meet with us to get Alex on board for therapy. The goal is to work with him on his running, and help find an alternative way to do it.
(Background: Alex runs back and forth in a line. He goes about 8 feet, stops, then turns around. Kids are beginning to notice that this is not your 'usual' behavior.)

The therapist pulled him out of class without warning, and he put up a "block". So now we get to tear it down, brick by brick, while Alex will put them back.  Alex hates to have his routine changed without warning.

I'm tired. He does really, really great, then something triggers him. Really, 99% of the time you would think he is a regular kid. Then that 1% where something blocks him and life gets difficult.

:-)
He's a great kid and it will all work out....
d

Doing Great!

I know I haven't updated. Sorry! It was really hard for me to come here and admit it, but yes, Alex was diagnosed with Autism. We have his IEP coming up. The ddd thing is, he's doing great! He goes through cycles where you think he may be Autistic, and then where he is totally "normal." We don't like the word "normal" in our house, because really, none of us are. :-)

He loves Destination Imagination and his chess club. He actually is identifying with a friend too! J. is 2 years older then him, and they play chess. When I asked Alex if he has any friends, he said if he had to pick someone it would be J. So it's a step closer.

Thanks to everyone for your support. We still are not telling Alex because he hates labels. But we will be moving towards helping him better understand who he is and how his mind works. God gave us someone very special, and he is going to change the world.