Wednesday, April 28, 2010

My Freak Parade

For me, one of the toughest things to overcome is the inability of some people to see past their life experience and attempt to actually put themselves in the other person's position to try to help.

Many well-meaning people have offered suggestions on parenting to me throughout the years, some valuable, some a pain in the neck (moving gradually lower). A fellow parent of an autistic child (HFA) a couple years older than son 2 was discombobulated by the fact that my son is late for... well, everything. Since her daughter is compulsively on time, she thought that was characteristic of all autism. (No. Sorry. Not so much really; no.) People like that are easy to deal with, and generally understanding when you explain that autism has many manifestations, and it would be difficult to find two on the spectrum with the exact same symptomology. The ones that give me pause, though, are the ones who stop me in the store to tell me that my boys are a little wild. (You're kidding, right? Good thing you're here, I might've missed that!) Thus I come to describe our family outings as "leading the Freak Parade". Naturally, as their leader, I'm the bigget freak of all, and we have family laughs and unity over the joke we collectively play on society.

I grow weary of the daily explanations. Son 3 is not in his wheelchair because his legs don't work - rather, it is his trunk that would not hold him up. No, he doesn't envy your ability to run - the wheelchair goes 30 mph. That is another post - parenting and FEAR. Son 2 is not hiding in the bathroom at Wal-Mart because he's committed shoplifting, he just likes the quiet and being around water. Sons 4, 5, and 6 are running because they want out of here as much if not more than you want them out of here. Son 1 is finding other people to talk to because right now, the Freak Parade is a little embarassing for him (yet another post, Parenting Teenagers).

Despite the weariness, I have learned to keep explaining, because it increases community awareness. My sons give explanation for themselves as well, in their own words, which, also increases awareness. In themselves and those they address.

I have an AWESOME Son 3 anecdote - for those who assume he is younger than he is based on physical capability.

We were at the Dr.'s to get his Botox injection for his inner thighs, and the nurse thought she was going to be funny and distract him by wearing a clown nose. He was calm, collected, and ready for the sting, but he tends to be treated younger than his age, or mentally deficient. He looked the nurse in the eye, and said, placidly, "Put down the crack pipe for just FIVE MINUTES. I'm 10!!". He cracked up everyone in the waiting room, and the doctor had to stop laughing before he could deliver the injection.

As a recovering addict, I learned 20 years ago to "take what you like and leave the rest". That's truly a program saying. But it does apply so well to well-meaning advice-givers-in-passing. They don't understand, and you need to decide if it's a nod-and-smile moment, or a teachable moment. It takes awhile to get used to making those decisions, but once I did, life has been much more fun.



Tuesday, April 27, 2010

My first blog post. I think it's appropriate to go into some detail on who I am, who we are, and why I'm starting this.

I hadn't initially considered blogging, because God knows, there are plenty out there already. Thanks to the encouragement of friends, I have come to realize that I may have a different perspective than other bloggers. The whole idea behind this blog is to share my experience, strength, and hope with those who are beginning to traverse, or stuck in the middle of, the special education nether realms.

My kids range in age from 6 to 22, they have various disabilities and abilities, and they are unique human beings. (Even though son 5 strongly resembles son 2 ten years ago.) They face different challenges, and parenting them is a challenge in itself.

Neurodiversity is bound to be addressed here, as is accessibility, and consideration. I think that every child should have an IEP, since they all have an "I". No one-size-fits-all education will ever be the ideal, but it seems to serve most.

I look forward to hearing readers' opinions, and following your blogs as well. I anticipate an interesting journey into the blogosphere. Thank you.