Acceptance vs. Awareness, Can These Autism Goals Co-Exist?

I think they can. Factions within the Autism Community hurt each other by bashing each other and discriminating against each other. I've been thinking a lot about the criticism Oprah and her Autism Speaks guests have ALREADY recieved, and I am thinking about the big wave of bashing they'll get later tonight in the blogging world. It's so distressing! Here are some thoughts to ponder:

1) Awareness is good no matter what angle. No matter what isn't covered. No matter what insulting symantics are used. Remember, the American public doesn't live in the world of Autism like we do. The American public must learn their ABCs before we can expect them to accept Autism for ALL that it is. How can one appreciate Shakespeare if they cannot even read?

Awareness gets children diagnosed.
Awareness gets children services.
Awareness gets parents talking about this once taboo subject. I now hear it and it's so exciting!

The controversial topic of Autism how now

tipped

into the mainstream. Once taboo, the media will now cover it. Oprah can now safely cover it. This is a good thing. Symantics will only improve over time, not get worse. I'm thrilled that Aspergers made it big on ABC too.

2) Autism must be marketed. Marketing 101 dictates that your message must be clear and concise. The message must be ONE big thing, something for the listener to remember and walk away with. People always complain about what the media DIDN'T cover. How can one hour represent everything people would want, let alone the major topics of autism such as genes, biomedical, therapeutic, and adult life challenges? Presenting something else along with the disabiling aspects of this disorder would confuse the layman, the message would get watered down. Niche segments are the way to go too, such as ABC's Aspergers coverage: Kids With Asperger's Syn.: 'Bullied on a Daily Basis', Asperger's Syndrome: Separating Myth From Reality, Asperger's Syndrome Resources

3)Those that know next to nothing about Autism far outnumber the adults and parents that have been living in the world of Autism for years. Most of us enlightened ones didn't automatically accept Autism. How can we accept something COMPLETELY that takes months to understand? It's hard to remember what it was like going through those early stages of the learning curve.

These newbies, the parents of young children by far are the biggest audience out there. They need our support. They need their families and communities to understand. They need funding, and often focusing on the disabling aspects of this disorder makes these things happen. The thing that drives me most crazy is our children NOT getting the support they need. The goal for most of us parents I'd think, to be able to support their children.

4) This is

just

the beginning. The media, global understanding, and tolerance for our differences will evolve. It must start somewhere, and it's with the ABCs.

5) Here's a link to the M.D. that will be on Oprah today: Bryan Jepson, father and M.D.

6) Parents and grandparents of Autism are all the same in that we share this disorder. We all deserve support and should honor each other. The path is different for everyone, what works is different for everyone, the focus is different for everyone.

And that's okay.

Growing Up

Check Out Those Supplements...an ASD Kitchen


I had a VERY interesting day yesterday. Leo had his 1st grade "archnemisis" over for a play date! Could it be? Charlie (the bus taunter/teaser?) from my 1/27/06 entry on http://www.hiddenrecovery.com/summaryoutlineleo.html

Natch, I barely slept the night before because I was consumed by the fact that the boy that gave my son so much grief will be over! And I was nervous about handling him. The one time he was over, I failed miserably at managing him (in my defense the parents didn't give me a heads up, can we say PID??) He broke some toys, crashed Leo's bike into a tree after riding over my pumpkin vines, dumped every toy bin over, and scared Sydney on purpose among other things. How much can happen in one play date? A LOT.

Let me just say it. IT WENT WELL. SUCCESS AND NO STRESS. Woohoo! I don't know if it's going to happen often, but they do like each other and had some fun.

And now for some background on this duo...This boy Charlie and Leo were on "different teams" and "not friends" practically all last year, after their friendship quickly fizzled. Leo was quickly turned off by his very active behavior and that he got into "trouble" so much at school. Later on in the year Charlie and a mid-year transfer student Harrison became fast friends. Of course, because life is complicated, Charlie and Harrison ride the same bus and live on the same road.

So recently, Harrison didn't ride the bus for a couple of days. Charlie and Leo sat together, and I gather they "discovered" each other. They are not in the same 2nd grade class this year, although Harrison and Leo are. They both began asking for playdates, which terrified me. I knew from last year that Charlie was on different medication and doing well with listening and controlling unacceptable behavior. I'm guessing he's ADHD. So because I'd seen able to observe him, AND I really wanted success, especially with a neighbor, I wanted to make this work (like I have anything to do with it).

They didn't quite know what to do with each other for the first 20 minutes. I thought "Oh God!!!". Charlie kept walking around and around and around while Leo was patiently following him asking him if he'd like to do X, Y, or Z. Finally, with some suggestions from me, they began playing outside. Natch, Charlie found the only dangerous thing out there, a fallen tree that hadn't quite fallen completely (yes, danger danger)and decided to hang from it, and in 5 minutes, convince Sydney to climb it. Images of dead or trapped kids danced in my head. Yes, the part about keeping my eye on him the entire time...I should've kept my plan intact. But other than that, they jumped on the tramp and ran around finding stuff.

I was pretty proud of Charlie - he has learned to listen and had some self-control. He also considered Leo's feelings and preferences. Not much eye contact, actually less than last year. Towards the end, I let them play X-Box (whatever that is). It involves the T.V. is all I know.

I couldn't believe it - I had prepared myself for anything - I had all my chores done including dinner. I had prepped Sydney that I'd have no time with her as I'd be occupied with the boys' safety. And it all turned out well. His mom came to pick up, and I told her what a wonderful kid he is, and that they had to refamiliarize themselves, but after that warmup period, they got along. Clearly they don't have too much in common, but both had fun. I was so proud of Leo - he didn't mention football, soccer, or any other sports games to do since he knew Charlie wouldn't be interested.

His mom has never mentioned Charlie's differences, nor have I mentioned anything about Charlie's history with Leo. I threw out several openings, but she didn't bite. Clearly she doesn't want to share with me, which is understandable. She has no idea what people say about her son, and I know he doesn't get invited to many birthday parties, etc, because he's a behavior problem. The mom doesn't stay at parties to facilitate, which makes it even harder for other parents to learn about Charlie and keep him from becoming even more unpopular.

So that's that story.

Harrison, the other little boy that is Charlie's best pal, is a good friend of Leo's too. We even went trick-or-treating with him and his family. Anyway, Leo and Harrison got into an argument, so for about a week "they weren't friends". Again, it began as a bus issue. Every day, Harrison and Leo would race to the bus, hoping to be first in line. Many times Harrison would get there first, but if Leo did, Harrison would elbow his way ahead of Leo, pushing him out of the way so Leo would be second. Leo told Harrison every day to stop it, that he didn't like it. But Harrison ignored him and remained 1st in line.

So at the end of the week, Leo told me about it, and that he was really frustrated because Harrison wouldn't listen. I said that friends don't treat each other like that. That friendship is about respecting each other, etc. With Leo always in control, I asked him what he thought he could do to solve the problem. Talking to Harrison wasn't working. What could he do now?

He didn't have any ideas, and so I suggested that he "ignore" Harrison, or tell him that he's not being a friend, and until he knocks it off with the bus line, he's not going to treat him as a friend either. That he doesn't deserve Leo's friendship. Let me clarify, I was totally winging it! I knew I should keep Leo in control always, but that's all I knew to do.

The next day, Leo came home and said he "tried to ignore him, but it was just too hard mom." I can't blame the kid, he's in his class, 2 desks down. The next day after that, he managed to ignore him enough for Harrison to get the idea. And as how things work, Harrison decided to ignore Leo too. This went on for a few days, and then they finally "forgave" eachother, and are now "friends again."

That night, I asked Leo if they watched T.V. AGAIN at school. This drives me crazy. Whenever the weather is bad or something is going on in the gym, out comes the VCR. Of course, the kids love it. I asked Leo what they watched, and he said lately it's been "Reading Rainbow". I had no recollection. Leo said we had watched it at home a few times. Still didn't ring a bell - I normally only record PBS type shows, and when he was into it, Power Rangers. Leo said, "Let me sing the song for you." And he begins to sing in a lovely little boy voice, so sweet and innocent. No embarrassment. I enjoyed every second of it, also relishing how creative he was in trying to jog my memory. "NOW do you remember Mom?" And I did.