We All Have Autism.

Image by Sailing "Footprints: Real to Reel" (Ronn ashore) via Flickr

In the very beginning, it was important; no, imperative, to me that the other two kids not lose their childhood to this disorder. I saw it as the enemy, and still do sometimes. No way would it ruin things for everyone. They would get to be children for as long as they were children.

A few years in, I had started to calm down a bit, but the fruits of my labor were beginning to show. When D would melt down, the other kids complained, whined, threw fits all the way home. Family outings became segregated. Worse yet, I didn't like the attitudes they harbored against their brother. They resented that he was different, that he interrupted their fun. They didn't want a sibling with autism.

I had been parenting all wrong, and it was long past time I pulled my head out of my behind and did something. So I got them all together in one room and said, "Newsflash! We all have autism." That got their attention.

I'd been teaching "every man for himself" when I wanted to teach "all for one and one for all".  Families stick together. Families shoulder each others' burdens. They work together as much as they play together, but I'd been too concerned about preserving their carefree childhood.

There are mental health professionals out there clucking their tongues at me right now. I know the common wisdom, but I wanted my children to learn uncommon wisdom. We never wanted our son's siblings to carry the load, but neither did we want them to be one's to leave it to someone else either. We wanted them to be the kids who included the autistic kid on the playground, not the ones running away from him. How will they ever learn compassion and loyalty if we put their comfort first? We seldom learn wisdom in comfort.

The Result:  Since our family changed our motto, the kids are closer. They care for D like a true sibling, and an unexpected thing happened. Our oldest, I realized, has many disabled and learning disabled friends. He's truly including everyone he can, and that's so much better than a carefree youth. When all is said and done, I'd rather be able to say our kids are empathetic, caring individuals who work for the greater good, than to simply be able to say "well, they had fun".

There is no fear in love; but perfect love casteth out fear.

 1 John iv. 18.

Data Collection for Parents

Image via Wikipedia

Each child has data. . . somewhere. The question parents must ask is can you find it. I have a system for compiling data that works even for the most unorganized woman on the planet, myself.

You'll need:
At least three sturdy binders and page protectors.


Binder 1:
IEPs: Design this binder to come with you to each case conference. Make a place for notes and questions. Keep copies of your most recent IEP there as well as all your child's current school year data; grades, progress reports, testing and evaluations.

Binder 2:
Progress- This is my catch-all binder. If I think it's data or could be data to present or analyze at any point, I keep it here. Progress reports move to this folder once I have a completed IEP for the year.

Binder 3:
Transition- We're all working toward the future, and that's what goes here. Anything pertaining to your child's graceful transition into the world. At the age of 22 in Indiana, at the latest, all children leave school. You need to sit down and ask the tough questions ASAP.

• Will he live with me?
• Will she be able to work at all?
• Will he need waiver support?
• Do we need Power of Attorney?

These aren't simple questions with easy answers, and some can't be answered yet. But it's best to begin to think about this now. Even if all you do is make a binder for things you can't look at yet, you're thinking about the future and adjusting your dreams continually to your child's progress. That's important.