Definitions Show Who We Are

This is a powerful piece that says so much of how I have been thinking and feeling, ever since I first thought my son, even before 18 months, might be autistic. It went through my head and heart when I was told by the preschool (after telling them why I was removing his name from their incoming students list after his diagnosis) that I should take time to grieve for the death of my dreams.

What makes us human? How do you define love? Why do we assume that happiness must be tied to "normal"?

I love my son and prefer to know the facts of his autism. Fears and prejudice do us all a big disservice if we give in to them. This cannot be stressed enough. I love my guy; that means ALL of him. It's hard and heartbreaking at times, but I love him. End of story.

Autism Awareness: Always

It's April 2nd, and World Autism Awareness Day is almost over. I have not put blue lights out or done much writing lately, but I am awware. Every day.

Autism has punched us in the gut and wrung our hearts. It's given me a new appreciation of what I really do have, and many more blessings in the little things in life meaning so much.

• My son's hand in mine. Being able to have him tell me what happened in his day. 
• Conquering hopscotch. 
• Watching him write. 
• Hearing him read all the road signs or playing the alphabet game on the way to school. 
• Finding out he chose to play football with his classmates at free choice, instead of playing games on the computer. 
• Watching him "conduct" music from the very back of the multipurpose room during his sister's chorus performance. Having his help with household chores.

• The pat on my back and whispered "It's okay, Sweetie, it's oooo-kaaaay!" when he sees me upset or sad.

• The Trader Joe's lady, who waits for him to come visit with her after he finds the Peanuts character in the store. 
• The boys in his class who hang out of car windows and yell "Hi, James!" during after school pickup as we walk to our car. 
• Seeing peoples' faces soften as he skips past them. 

All special things I might have been too busy to notice, if I had not been made aware.

What would I hope for others to be aware of? Please don't put people in an autism box. Please don't get too caught up on test scores and check boxes. Please don't see a price tag or something dangerous.

Listen to the parents. Take a good look at all the little things, and be aware that they matter, and you can help make them happen.

Help us. Help us find answers, solutions, and a better future together.

One thing I will be doing, is walking this month to raise money and awareness for Autism Speaks . Please help, if you can, and thank you.

SNwRG: Ally

Last week I wanted to post, but was wiped out from our road trip and James' illnesses that hit soon after our return. I was tired, worn out, and low.

There must be something in the air, as I read Sunday's 6/12 post today. I can tell she must be going through a rough time, because for the first time in a long while, there's no new Ryan to grace our Fridays. So I am using last week's image for this week's post:

Put them to bed for me too and I will be forever grateful!

Thanks, I needed that!

Here's a secret: I tell this to my kids sometimes.

And for Sunday, I sure hope you are feeling better soon!

Visas, plane fare, and daily euro allotment included.

Thanks again to Sunday over at Adventures in Extreme Parenthood and Ryan, for making me smile when the going gets tough. Head on over to see more Ryan and share your take on parenting, special style.

Still Learning Our ABAs

Autism-related behaviours manifest differently with each person. Our experience with James is special in that he likes and seeks out others, he is normally sunny, and is empathetic toward others. Sometimes I realize how focused I am on James, and how much I am not paying attention to the bigger picture if Autism, it's issues and research.

For example, this morning I was reading an article regarding treatments for those affected by Autism Spectrum Disorder (ASD), which is James' official diagnosis. There were many references to ABA.

Huh?

Okay, I'm officially clueless. I had to Google it. ABA stands for Applied Behaviour Analysis and there are pages and pages out there on the internet that cover what this means, what's hot, and evidence-based reports. The Bright Tots website is what I was reading this morning.

Once I got going, I realized I did know what this was, I just wasn't used to thinking about it as "ABA". In preschool, his teacher and SHAPE assistants worked with us to help James learn to eat and dress by himself, as well as cleaning up after himself. It was key in getting him engaged with successful potty training (although it took several attempts to find the correct motivating behaviour). Instead of ABAs, we talked about self-care goals, targeted social interactions, delved into breaking tasks down into small steps & social stories, and strategized ways to model correct speech & language.

Now in kindergarten, his team and family continue to look at ways to keep James engaged in his class routine, improve his social & language interactions, and encourage age-appropriate behaviours. So I feel better that I haven't totally missed out on ABA for James.

What I still feel I need to learn about ABA, though, is how else it might be able to help James. Where we can find these services. How we can pay for them. Because last time I looked, they were not covered by health insurance in California. Because I agree 220% with Autism Speaks in the part of their 2009 document "Arguments in Support of Private Insurance Coverage of Autism-Related Services", which states:

Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.

Incidentally, I think the government should be seriously looking at this as well and see programs that support ABA-related services as a key investment in our future. We need to keep state and federally funded programs intact as much as possible, because for families like us they are just about our only options.

James currently receives the bulk of his services from public schools and the North Bay Regional Center. Without this assistance, we'd be hurting. And 10-20 years down the road, James might be even MORE dependent on government-related services, had we not had the help to get him to manage his own self care and jump-started his learning and speech. Along with the other 1 in 100 children on the spectrum.

Special Exp/ Wordless Wednesday: Talk2Me

I am taking a parenting class series. The first night I heard a lot of information that I've already picked up before. But one statement hit home and I've been thinking about it ever since.

Even though not all our kids are verbal or eloquent, they will find ways to communicate with us, trying to tell us what they need.

I think of the running off, grabbing & throwing of things best left alone, the verbal stimming. Then my son will look at me like in the picture above when I try to talk with him. Goes nowhere fast. Very frustrating.

That class really turned on a light for me. Talk to me, James, I will try harder to listen with more than my ears.

For more great images or to share some of your own, Visit Special Exposure Wednesday at 5 Minutes for Special Needs.


and ... Wordless Wednesday