Setting an example for our autism youth

My desk area for Galaxy Zento

You might remember, a couple blog posts back, where I wrote to you all about my Galaxy Zento project and what you could do to help with the setting of that example. Well, you worked wonders, my friends and tripled the number of people I was reaching. That's not a million people or anything, but it was a record and I'm grateful. The record? 676 people reached. That's more than 5x the number of LIKES on the page. Thank you!

So today I want to share more about my experience growing up and my son's experience in comparison with autism. I want my experiences to give hope to families struggling with understanding their kids and hope to kids who aren't sure where their lives are going.

This is NOT to say that I have the final answers to anything in autism. It's not meant to give false hopes to anyone. But if you have no hope to draw on at all, where does that leave you?

When I was growing up I was considered to be one effed up kid and that's just the language that got used. During the divorce of my parents I vanished into a fantasy world tried to get others to believe that I had bionics like the Six Million Dollar Man. Today, my son is trying very hard to convince us that he's a star in outer space with super powers. The fantasy is still there.

My son and I collect together

I developed rituals before I was ten of doing things in even numbers. I had to turn lightswitches off or on twice, zip zippers twice, turn objects twice and so on. I felt severely compelled to do this and I don't remember thinking there would be anything but bad luck if I didn't.  I developed a stim of clearing my throat, just like my son does today. I had other stims too and sensory issues. I liked the feeling of some fabrics under my fingernails and cool surfaces were calming to me.

I developed trouble in school early. In my last article I explained that my son has gone through a spot of bad behavior, stealing back his DS when grounded and sneaking out of the house at night through a window with a six foot drop. Well. When I was 8 or 9, I was told to stay after school. I knew I would be in trouble at home if I were late and I told the teacher my father needed to be called. She said it was my problem. I asked to go to the bathroom. She let me and I snuck out of school and ran home. I destroyed letters I was supposed to deliver to my father from the teachers before that (only two days before) and had to stay after again. This time she said I was NOT going to the bathroom. However she left the room,  summoned by the principal and I was gone.

When the phone call came, I got the most horrifying belt beating you can imagine and sentenced to my bed for thirty days. I was to come home, do my homework on my bed, eat dinner on my bed and I could only leave my bed to go to school or the bathroom. I could have one stuffed toy. My father let me out of that punishment after a week. He didn't think I could handle the whole thing, but I never, ever did that again. I won't punish my son like that, but he is in a lot of trouble right now. The difference is I have a team of people to work with him and explain things and teach him. All the while he still gets disciplined. The point is, I had my behavior rough spots too. I had my ticks, my stims, and all the things I see in him today.

By the time I reached 6th grade, I had very few friends (there were 3 of us) and two of us were bully magnets. Before I went to Jr High (a total freaking nightmare) I was playing with kids 5 years younger than me. Just like my son prefers to play with kids either way younger or almost adults (sound familiar?). I didn't understand kids my age at all. It was a concern but not addressed very well, so continued. Those were the times. Now I'm hoping to keep him from being bullied like I was.

A painting I did for autism

Despite my life and all I went through, despite not having support for autism as kid; despite running away from home at 14; despite my random life that I will be sharing here soon; despite the fact that my medical health has gained deteriorating factors, I am still doing things. I still became a parent of four kids, I still have a part in their lives, I still held jobs, and now I'm still striving to do something, anything. I want kids with autism (who are unsure of their lives) and kids with bipolar or who are being bullied, to know that they can do something too. That is what Galaxy Zento stands as an example of.

You can do this too. You can take the accomplishments of your life and show them to your kids. Show them that it's not over until it's over and life has possibilities for them. Show them other people who do amazing things despite disability. It's not about being gainfully employed either, it's just about doing something that you can be good at. And that's a great start!

So thank you for sharing Galaxy Zento. I hope more of you will continue to "like" and follow the page. And when the first novel (The Chessmen) gets published, you'll hear about it first. Thank you!

Everyone needs support in autism parenting

The last couple of days have been a rocky ride for me. My own medical conditions have been slapping me around and making it hard to get things done. Still, I have managed a few things and made a decent weekend for a family visit. In recent events, I have found a challenge. Well, it's been there all along, but you may be able to relate.

This challenge is in co-parenting an Asperger's child or any child with special needs. This challenge is support to the child and the other parent. Support has to go in all directions. While that sounds simple in words, the application is anything but.

The most obvious need of support is the child. His difficulties in dealing with the world around him demand it. He has a lot of development to catch up on and the world isn't likely to be forgiving. Half the time, it's definitely not forgiving. One of the lessons recently cited to my son is this: "Our condition is not an excuse to break rules". Discipline can be tricky however thanks to sensory issues. I can't spank him, it will cause a full blown meltdown for hours. Yes, a long long time ago, I was a parent who used spankings. I don't anymore.

Next there is the co-parent, and even more challenging, the step-parent. A step-parent is walking into a whole new world and it's quite an eye opener. For an accurate view on what this is like, please check out my fiance's blog:

http://aspergerblender.wordpress.com/2011/08/08/actions-and-re-actions/

It's more than a little frustrating for both parents in this situation and you have to support each other just as much as you work to support the child. You have to remind each other that it's going to be okay somehow and that each others feelings are valid. The second part of that is actually the most important. It's okay to feel frustrated, you have every right.

I can't tell you how many times I've sat down to explain consequences and behaviors to my son and got reactions that just didn't fit. Many reactions suggested that he never got the message I was trying to deliver. I would have to prod at that time and ask him if he was hearing me. I would have to remind him that I wasn't talking about the fantasy things and needed him to hear me. I often ask him what I'm talking about. Sometimes, for that, he shakes his head hard and get's angry, and says: "I just don't know!" He doesn't like to talk about his behavior.

On another note, he's actually angry with himself and we have to watch out for that one. He'll actually call himself "crazy" and "bad". That's not psychologically healthy either, so has to be intervened. I tell him he's not crazy or bad and that he has behaviors to learn like anyone else his age. I tell him we are just trying to help him learn them and he's not always going to like how that is done. No one does, and everyone has to learn. It's all that can be done at that point.

Yes, therapy is important and support in other places like school is too. But, one the spot, in the moment, this is what you are left with. There's the child's pain because he doesn't understand himself; your own pain and stress from worry; your parenting partner's pain and stress; and worry for each other. What else can you do? See it for what it is, call it like it is, listen to each other and support each other.