Video Game Nightmares

Ryan LOVES video games. This in itself is not an issue. He loves the colors, the movement, the music (which he can mimic perfectly, btw...sigh!) BUT he doesn't 'get' it. He doesn't understand the concept of the character 'dying' or losing lives or whatever it is on a particular game. Super Mario Bros for the Wii is the game we've been having the most trouble with. He LOVES it but it is a huge source of stress for him.

He stims from the music and vibrant colors. He jumps, flaps his arms and moves his body is funny, jerky movements following the character on the game. He gets so into the game, he virtually loses touch with reality for a little while. He gets very upset when the character gets hit by an enemy or 'dies'. By the end of a game, he is sweating, red faced and generally just upset and out of sorts.

He has hit Eric and himself during game play because he is so upset. He has cried because of events that occur in the game.

So should I remove the video game from him? Or do I try to continue desensitizing him to it? Keep explaining that it's not real or reality and that it should just be for fun? It's so hard to explain some of these kinds of things to a child that doesn't 'get' imaginary things or 'pretend' ideas.

But he doesn't LOOK like he has Autism....

Yet again, it's this question....
"What does Autism look like?"

The hard part is that Autism doesn't have a look, persay. There are some similarly characterizing behaviors...but even that isn't very efficient for 'picking' out a child with Autism. Each child is so very different. Let's say there are 50 parts to Autism...one child could have 20 of them, another could have a different 20 and a third can have 10 of the same of the first child and 10 the same as the second child. All three will have different issues and behaviors. Autism is very hard to put into a box. I rather prefer it that way, anyhow.

When people I know meet Ryan (people that we don't spend a LOT of time with), they say "He doesn't seem like he has Autism", or "I couldn't tell anything different about him". I just kind of smile and nod. My son takes a lot of pride in having nice manners. He says please and thank you, he doesn't typically have a meltdown in public anymore (barring no issues arise), and he says "what's your name?" and "nice to meet you". He seems like a quiet, well-behaved child. And he is. Mostly.

Then when these people come to my home, or spend a little more time with Ryan, they begin to see him a little differently. His sensitivity to food, his inability to understand video games, his stimming behaviors, when he gets frustrated or upset, his odd behaviors, his language...etc. Then it's "yes, now I can tell he has Autism".

My son functions very well on a day to day basis. He's very smart, he's talented in many areas of life, he's loving, caring and sensitive...why does he have to LOOK like he has Autism or BEHAVE in a way that 'shows' his Autism in order for people to understand who he is on the inside, the part that really matters?? He's not Rainman. You can't always just TELL by looking at a child.

Is my child Autistic? Or does he have Autism??

I struggle over this 'word game'. It means the same thing on the surface. Bottom line is that my son has been diagnosed with Autism. What does it matter? It probably doesn't. But I HATE the word Autistic. Hate it. It's pretty irrational, really. And I'm not sure where it even began.
Perhaps it's because it's so labeling. I feel like if you call a child Autistic...it somehow diminishes all the strengths they possess. It overshadows the child and puts this blanket of AUTISM over them.
I prefer to say my son has Autism, because he can also have a sense of humor, a big heart, a loving personality, an interest in snakes and insects, a dislike of loud noises and large crowds, a love of ice cream and a fear of food.
Many people feel different ways about this issue, and none are more right than any of the others...
I just had a moment where I wanted to state my viewpoint. :)

I wanna be an Astronaut...when I'm thirty.

Ryan has had the dream for a couple years now to be an astronaut when he grows up. Actually, he says that he is going to be an astronaut when he's thirty. It's amazing to hear him talk about it, and the questions he asks are so smart. I have mixed emotions at this point about it. On one hand, I am going to encourage him to reach any goal he wants. Afterall, I'm his mother. I am going to fight for what he wants til the day I die. But, I worry that there may come a time where some of his dreams are not going to be a reality, and how am I ever going to tell him? I hope and pray that day doesn't come but the reality of having a kid with special needs is that there ARE going to be some things in life that just aren't possible. How do I prepare for that? Obviously, at his young age, there is so much hope and potential for him and with increasing information, there is going to be a vast world for him. But as he grows older, smarter and more aware, he is going to want things that may not be feasible for him. I don't know how I'm going to do it.

Medication Update

So the Adderol that Ryan was trying didn't work. There was virtually no improvement (no negative side effects, either, which is good!) and I am not going to continue medicating my child if there is not a significant change. I did notice a slight increace in the clarity of his speech, as well as a little bit more ease in formulating thoughts and expressing himself, but it wasn't enough to warrant the use of the drug. So after visiting with the doc yesterday, we decided to try a different medication with a little higher dose. I am excited about the possibility of finding something that will help him, but I'm also realisitic in the fact that there may not be anything that will help. More to follow...

Autism Education in Classrooms

I decided that it was important for me this April to go into my son's classrooms to talk to their classmates about Autism. I chose age appropriate books as the base of my talk with them, and I printed out a blank Autism Awareness ribbon coloring sheet for the first graders (this is the class my son Ryan, who has Autism, is in) and a fill in the blank worksheet for the fifth graders to fill out while I talked. When I arrived at the school, they called Eric to pick me up in the office. He was a little nervous and embarassed for me to be talking to his class, but he was also excited. I arrived in the class and Eric's teacher had him introduce me and tell his classmates why I was there. Mr. O, the teacher, asked the class "How many of you know someone with Autism?" A fair amount of children raised their hands, probably about 40% of the class. Then a little girl spoke up and said "I have Autism". All eyes turned to her in surprise. None of the children had known previously, and since she has a fairly mild form, no one had seemed to notice. I was touched that she felt comfortable with my presence there to share this information. Mr. O asked again, with a smile on his face, "NOW how many of you know someone with Autism?" The entire class raised their hands. I had Eric pass out the worksheets as I made my way to the front of the class. I began by asking the children if they had any questions before I started. Of course there were many questions, but what impressed me was the quality of the questions! They were really thinking about this topic and asking very smart and mature questions. "Can you get Autism when you go through puberty?" was my favorite question. There were two children who had siblings with Autism who offered insight, which I so appreciated. The little girl with Autism shared some information about what it's like having Autism and she told me about how she uses Echolalia at home, but she's not sure why. She said she "just likes it". This was special for me to hear, because perhaps when Ryan does it, he's doing it just because he likes it; not because of another potentially negative reason. Who knows :) She then asked me if puberty was going to be harder for someone with Autism. I was very moved that she wanted to ask that, however it is not a topic I am familiar with yet, nor am I the right one to talk to her about it!! So I recommended she and her mother go to the library and get books on it. Over all I was BEYOND thrilled with those fifth graders. They were smart, attentive and open minded. This is why it's so important for our children's futures that they are educated on diversity of all kinds at this young age.
Next I went to Ryan's classroom. I have been there before to read and I must say, the kids are particularly fond of me. I think it's because I bought Ryan a pet snake and they all think that is totally cool. I walked in to a chorus of "IT'S RYAN'S MOM!" and "HI RYAN'S MOM!". It was hearwarming. I sat in front of them and asked them if they had ever heard of the word Autism. One boy raised his hand and said "I've heard of it but I don't know what it means". I read the book called "Some Kids have Autism" and then asked the children if they had any questions. Boy, this was a different group than the fifth graders!! HA HA HA One little girl who was wearing glasses said "I think I have Autism in my eyes because I can't see very well." How can you not smile at that? They were also concerned with HOW do you get Autism? It was hard to explain to them but I assured them that kids with Autism are born that way and they can not 'catch' Autism. Ryan was very happy and comfortable talking about it and shared many comments with the class. They did not seem to look at him differently and many almost seemed bummed that they couldn't 'have Autism, too'. I then had Ryan help me pass out the Autism Awareness Ribbon coloring page and they were excited to color it. A couple of the little girls gave me their sheets, which was quite moving. The little girl in the glasses wrote on hers (after asking my name) "Amanda is Ryan's mom and she is osum, Ryan is osum too". I about died. :)
I also sent a letter home with all the children letting their parents know that I was there and what I had talked about with the kids. I provided my information in case there were any parents that had further questions or to let them know that there is support available should they, or someone they know, need it. Overall, it was one of the most amazing experiences of my life and I am DEFINITELY doing it again. I would love to begin a reading program to visit all the classrooms in all the school district. But...I'll start with one class at a time :)