How having a child with Autism has changed me

I'm different. Many of you may not notice it, but I am. I've had to retrain myself in order to raise a child who fits outside of what I know to be true. I'm not as social as I once was. I'm more blunt then I used to be. I feel more tired. I look at the world differently then I used to. Having a child with Autism changes you. You have to change in order to better understand them. Here are some examples:

Having a child with Autism means that "fun" is different.  For me, fun is Saturday in the Park, surrounded by music, food, and friends. We used to take Alex. What I didn't know, was that I was torturing him. I thought he was being rude. I didn't want to leave early, but we always did. Saturday in the Park is no longer a family event.

But sometimes I forget.

For Billy, going to Chuck E Cheese or Dave and Busters is fun. Who doesn't love a giant arcade? But I failed Alex in thinking of Billy. Too loud. Too much stimulation. My son wasn't being rude to the waitress who tried to seat us when he said, "I can't eat here." He was just honest.

For most kids, a run around the zoo can be an all day event. For a child with Autism, they can take in so much, and they are done. We had to push Alex a little during our day trip. We have two children. But we can't push him too far.

I've had to retrain myself and my thinking in so many ways.

*What is fun for me, and most people, is not fun for Alex. That includes lots of people, small groups of strangers, and anything loud. I've had to retrain myself on what we do for family fun. Growing up, I thought every child would love Play Groups. Boy was I wrong. Alex hated it. He ignored the other kids. I was the parent of the rude child. I tried. I redirected. Thank goodness the only one who was hurt was me. Alex never noticed, or cared.

*Friends are not necessary in the way I grew up with friends. For me, friends were a part of my life almost daily. Billy gets so bummed when his buddy can't come over. For Alex, once a month, or even every three months, is sufficient to 'hang' with his buddy. And after an hour, he's done. Sure, he enjoys other people's company. But he doesn't need it.

*Routine is essential. I love to just drop everything and go. With Alex, I need to give him time to go through his routine. Even eating is a routine. Alex will disappear to go the bathroom and wash his hands. Then he gets his drink. Then he sits down in the same chair.

*Blunt isn't rude. I wish I could teach this to other people. Alex calls it as he sees it. He doesn't filter or sugar coat information. If he thinks you are rude for cutting in line, he'll tell you. If he thinks your child is being a brat, he may blurt out that "Your child is out of control." If you do something stupid, he'll say, "Mom, that was just stupid." He does have empathy, and a huge heart. He wants to help. But he doesn't understand why you would pad information.

*Be specific. Be very specific. If you tell Alex, he gets to pick dinner, that means he's in charge. If you don't want McDonald's, you need to say upfront: You can pick dinner, but no McDonald's. If he says he wants something, you need to deliver. He can't switch gears as easily as most people (notice I said most) and be Ok with something different.

*Yes, he ignores you. But he's not ignoring you. Alex needs lots of space. Billy needs lots of attention. It's a hard balance in our house. I have let Alex know in his expectations that he does need to spend some time with his brother, and he does. But I've also had to teach Billy about space. And I've had to train myself to give him space, especially after we spend part of the day together.

There are many things I do differently. That's who we are.

Sweet Thirteen

In honor of World Autism Awareness Day, I thought I'd update.

It's been 2 years since Alex was diagnosed. A lot has happened in that time.

• He has embraced who he has and has learned how Autism can both help him, and also make things difficult at time. It's not a disability, because he can still do anything he wants to do.
• He is beginning to come out of his shell and his great personality will shine through periodically at school! This is the most exciting thing for me, that others get to see how amazing Alex is.
• He is running track! His stimming is running.  I want to turn that stim into something constructive. The second day I get a phone call after school. "Mom, they are going outside." "Yes Alex, that is where the track is." "But it's cold. I only go outside if it's 60 degrees or warmer." I re-explained that is why he has all those layers in his locker, and told him to go put them on and get out to the track. He did. And there have not been any fights since.

We really try to push Alex's strengths. He's an amazing kid, and most of the time, you'd never know.

Diagnosing him was the right thing to do. It has really helped put so many things in perspective for both him and me.

Remember, the spectrum is large. Each child is different. If you see a child having a fit, or covering their ears, or making a noise, or doing something like running back and forth, don't judge. That child will change the world.

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.

~-Emotions

Alex has always been a little "detached" in his emotions. As I learn more about him, I am beginning to realize that he doesn't really understand emotions, or see how they apply. For example, Love. He really does not get Love. But he knows it's OK to love his daddy or me. And he's OK that we love him.

But when I said, "you know you are loved by many", it upset him.

I recently read this article: http://www.psychologytoday.com/blog/aspergers-diary/200805/autistic-aloneness-when-coping-mechanisms-go-bad

Part of it explains Alex... he doesn't understand so he doesn't attempt. Trying to untangle friendships and common courtesy of daily interaction is just a pain. He thinks we are crazy for our daily emotional routines, and yet "we" think he is a little different for not feeling the same way.

Alex does have relationships with those he feels are worth the sacrifice. There are not many he feels are worth taking the time to untangle, and most of those he has let in have been with him since birth.

Funny, when I said I'd love to change places for a day, his answer was "I would not like that very much at all."

But he is very kind, and empathetic. He does care about others.

I'm not sure if I will ever totally understand him, and maybe I'm not supposed to.

OK, it is time to watch "Aladin", Alex's choice.

I don't miss you

The first time Todd and I went out of town, Alex stayed with my mom. He has always felt comfortable at her house. They have always had a very strong bond. We were gone about five days to go to Cabos for a trip I had earned.

This is not the first time I had left him. I've gone to conventions and meetings and he had his dad, and he always did fine.

I remember calling him and asking him, "Do you miss me?" I missed him so much. His answer was "no." It was odd, he never seemed to miss me.

I used to feel deeply hurt knowing my son did not miss me. When we got back I asked him again, "Did you miss me? I missed you so much!" His answer, "No mom, you know I don't miss you. Why would I? I knew you were coming back."

Even at that time it still stung. I didn't get it. I didn't know then about the thought process my son had. Now I understand. He is so logical that the emotion of something missing can not exist if he knows it is not lost.

He does like to know where I am going to be, how long I will be gone, and what I will be doing. Once he has the information, he is fine.

One trip we were gone for 9 days. That trip Alex did begin to miss me. I think it was long enough of not having me around that his schedule was changed and he felt us missing. It made me feel better knowing he does notice me in his life.

Once I began to understand Alex more, it really did help me in my own way of dealing with things and how he reacts.