D is for Distracted

Hi. So no posting since January 9th. Not that impressive. I did mention when I started this blog that it wasn't going to be a serious commitment. That I had enough serious commitments in my life at the moment. And as if to prove my point, the universe sent down a couple crazy-busy weeks for me to deal with.

There's been the fun stuff: birthday parties that the Squish actually seemed to enjoy! Visiting with good friends! Going to Monterey with the boys and seeing the seals. All really good things.

Then there has been work-related things. Namely, more work. More, stressful, unfulfilling work. And a job I wanted given to someone else.

Then there's been the real crappy stuff. Finishing up all the paperwork and evals for Squish's IEP. Defending our decisions to half our family and our ABA provider. Fighting the urge to constantly second-guess ourselves.

And then there's the really crappy crap...the fact that my mother is losing her battle with mental illness and substance abuse.

So, there have been some distractions around here lately and the blog fell off my plate. As did my blog reading. And I missed it and the folks inside the computer who are so welcoming, insightful, and warm.

So the blog is back on my plate. At least for today.
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Monday, January 09, 2006

C is for Community

Last Thursday night I attended a "Mom's Night Out" dinner organized by a local support organization for the families of children with disabilities. Although I had been to many seminars and classes at the organization's offices, I had never attended one of these moms-only events. Why last Thursday? 'Cause I knew there would be women there who had gone through the IEP process several times and we are gearing up for our first and I had some questions for them. The kinds of questions that just can't be answered by someone who hasn't been through the process. And yes, as I write this I feel pretty sad that my reason for going was so selfish. But that's why I decided to go this time versus all the times I was invited before. Because I needed something.

When I got there seven women were already seated (I was running late). Six of them were "veterans" -- most of their children were in elementary school or being homeschooled and they had been through everything I had plus some. Then there was me. A "newbie." Son diagnosed less than a year ago, gearing up for our first IEP. Then there was "Jane." Jane's son hadn't received a diagosis yet (he was on a waiting list) and she was pregnant with her second. She said she came to dinner because she needed to talk with people who understood why she couldn't get through the day without crying. Why she couldn't get through an hour without crying.

I went to the dinner to get answers and I got 'em (these ladies are AWESOME), but I also gave them. Jane and I were seated together (pure divine intervention) and we chatted most of the night. Her son and my son are the exact same age. I sat and listened. Listened to her fears (he'll get lost in the system), listened to her hopes (that he wouldn't be 'labeled' autistic), listened to her anger (I don't know why this is happening to us). I told her I understood how hard it is to be pregnant and worried about your toddler (as I had been prior to Squish's dx), how the stress and hormones add up to waterworks at the drop of a hat, how you obsess about your unborn baby and the statistics that 4x more boys are diagnosed than girls, that siblings are at a higher risk, etc. etc. etc. And I told her that as hard as it is to believe right now, that things will get better. I also told her that no diagnosis changes who her son is. He's her son. The diagnosis is just the ticket to the help he needs.

I gave Jane my contact info and she followed up last night with an email thanking me for answering her questions and for listening. I sat at my laptop and cried. Cried because this is a milestone for me. I was able to help someone else. I was able to pass on what had been given to me. And it felt good.

Thursday, January 05, 2006

B is for Behaviors

When Squish was first diagnosed, everyone asked about his behaviors: was he self-injurous, did he scream, tantrum, hit, etc. At that time (he had just turned 2) he didn't really have any. Sure, there were a few tantrums but mostly he just kinda went along with everything. Fast-forward to today and he has a whole array of them. He screams, tantrums, and unfortunately hits (as a last resort when the screaming and tantruming don't get him what he wants). The weird part? I'm kind of celebrating these behaviors. 'Cause they tell me that he has opinions, ideas, desires, and he ain't gonna roll over just because you ask him to.

That said, I want him to learn that there are better ways to express himself. He has some expressive language now and he needs to use it. He needs to understand that there are general social rules that he needs to follow. But he's not even 3 yet...there's time.

Maybe it's because I feel this way that I almost blew up at one of the therapists at Squish's OT clinic this morning. He was doing a great job stringing beads, drawing circles, trying to cut "pway-dow" with scissors, etc. while waiting for his turn on the swing. Squish loves the swing. He loves it so much that when I mention his OT's name "April" he says "swing." And we aren't talking about just any swing. We're talking about a giant swing that hangs from the ceiling and has all these different seats (tubes, hammocks, bolsters, etc.). So waiting his turn on the swing is extremely hard for him, but he did it.

After his turn, during which he said "mow wingk" (more swing) everytime the swing as much as started to slow down, he had a pretty good tantrum. He wanted "mow wingk" and April wanted him to work on his balance by holding one foot up and then the other. He ended up on the floor screaming while April calmly told him to stand up when he was done. This I agree with. This is what we do at home too. Make sure he isn't hurt or hurting anyone else and then ride it out and try to redirect him.

What I don't agree with is the other OT "Mary" taking it upon herself to tell the Squish to use his "indoor voice" and asking him if he had an "indoor voice" and if that was his "indoor voice" she'd hate to hear his "outdoor voice." Our OT just kept focussed on Squish. Telling him that when he was done he could stand up. I, on the other hand, was reeling.

Not more than 5 minutes later the session was over and we were out the door. We got in the truck to drive home and Squish fell asleep. I stewed for about 5 more minutes and then called up the clinic. I spoke with April and told her that I didn't appreciate Mary's comments and that if Squish's behavior was an issue, they needed to take it up with me, not with my somewhat non-verbal 2 1/2 year old. April apoligized and said she'd speak to Mary.

It's getting late and this post is turning into a bit of a ramble, but the bottom line is this: sometimes I feel like Squish's behaviors are easier to understand and tolerate than the behaviors of some of the "typical" folks we encounter.

Tuesday, January 03, 2006

A is for Attitude

So, I was talking to my friend on the phone today about blogging, and her blog, and how much I've learned from other people's blogs and I thought, I really need to get serious about writing a blog. Except not. Serious, that is. 'Cause with raising an almost-3 year old son on the autism spectrum and his nine month old brother while being a wife and a work-from-home employee, I really don't need any more "serious" commitments in my life.

But I do need an outlet. And I do need a community. And although I have a bit of both in real life, I know that the internet universe can be so, so incredibly helpful. It's helped me thus far.

So now, what to say? I can say we are in our ninth month of recovering the Squish (my oldest) from his ASD. We are in ABA, music, speech, and OT therapies. We are working the diet/supplement angle (but not in the traditional GF/CF form) -- we are working with an allergist and immunologist. We are gearing up for his IEP. Most of all, we are a family doing what families do: loving and supporting each other. Sometimes that gets lost in all the appointments/meetings/schedules/supplement charts/dietary changes/etc. But we work hard to make sure it is so...whether it's movie night in Mommy and Daddy's big bed (with popcorn!) or a romp around the backyard (even in the rain!) -- we make sure we are always growing as a family.

As I look forward, I see that my attitude and the attitude of those around my family may have the biggest impact on Squish and his progress. We need our family to continue to learn about Squish's condition and how to help him as he progresses. We need his teachers and therapists to have as high of expectations of him as we do and the compassion and the expertise to help him reach those goals. And I need to be knowledgable about his condition and our rights, clear about our expectations, sincere in my desire to work as a unified team with the school district, absolute in my resolve to get him what he needs -- team or not -- and willing to go to the ends of the earth. I need to be the Mommy.

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