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Friday, July 6, 2012

our fourth of July normalcy

I had a pretty interesting day on July 3rd that gave me a bit of inspiration. I spent that morning baking. My kids have been on specific carbohydrate diet for over four years, so typically I spend one day a week doing  batch cooking. Today's "to do" list included: Sweet potato cake, Lima bean mash, strawberry applesauce and squash chips.

It's 83 degrees in my house and I've got to BAKE?!

As I hustled around the kitchen preparing for the busy fourth of July weekend my phone rang. Praying it was the AC guy since our air hasn't been working well. I answered in my most cheerful false voice (that didn't belie my sweat soaked irritation). It wasn't the AC but another parent from J's previous private school.

I've been trying to set up a play date almost since her child started. He is a sweet boy with very few real "behaviors". So I was happy to hear from her, after all this is supposed to be the summer of play dates. She had just gotten back into town and made some small chat with me. We step up a date to go to a local splash park. One thing I love about splash parks is that EVERY kid is running around flapping their hands and screaming in absolute ecstatic joy, so typically, I don't have to have the Autism "don't ask, don't tell policy" in effect. After that I tried to get off the phone when she blurted out, "I need to ask you something, if that's okay". "Ok, I say ask away". Honestly I can't shut up about Autism.

She proceed to ask me about J's development. When did he develop speech, did he have a regression, when was the regression, how did we end up at the private school? I calmly recited the list of answers I've given SO many times. She would give me her sons counter points in a quavering voice. As we finished up the Q & A session she confessed to me how great it was to talk to some else about this and how her family wasn't supportive. Her heartbreak was nearly palpable. She never really got a diagnosis for her son or doesn't remember it (she told me she'd have to look through her paperwork for it). Which I find both heartbreaking and odd. I remember to this day, nearly six years later, the day we got the diagnosis, THE DAY! It's my personal equivalent to the Kennedy's assassination or 9/11, you just don't forget THAT DAY. 

UMMMM, I forgot? Not likely
We chatted on a bit more. I told her about a local support group and we finalized plans to meet. 

I used the play date excuse to recruit another mom who I like and don't get to see enough to wrangle her into coming to the play date. Her son and J had been in the same classroom on and off for over three years. We talked about the summer and how the kids were doing as a result of the change in schedule. J is getting louder (lots more screaming). Her son has is having difficulty too. Also since starting summer school he started shunning all peer to peer interaction by putting his hands up and yelling "NO" when a peer approaches him. She's worried about his placement for next year. His behaviors are getting to the point that he cannot continue to function well in a academic classroom. After that we discuss the ABA that he just got approved for, a whole whopping eight hours. She's trying to get it done at the school but they haven't placed him with a therapist, one month in on a six month insurance approval (that she fought tooth and nail to to get!). Then we talk about the dental work her son has to have done, there is one dentist that takes their insurance and that is willing to put him out. Of course it's far out of their way, inconvenient and it is terrifying to have him put under anesthesia for a simple cleaning, cavity  fill and set of x-rays but what choice do they have. 

They both sound like I felt when I wrote "it 10 am and I'm exhausted" ( I feel like I did what I could for both. I was a shoulder to cry on and someone to complain to and bounce ideas of off. I gave them what information I thought would help and even offered to make a few calls myself.

After that my day went on. I finished my cooking, got my kids ready and went out to my best friends impromptu Barbecue. I have to say it was wonderful. All the kids played together, J and her youngest spent most of the night "fighting" aka wrestling. They cooked on the grill, keeping my kids food separate. The great American organic hot dog. All the kids ate together never thinking to question why my boys weren't eating the same things they were. Then we did sparklers which was a bit scary, J's doesn't seem to fear them, its a bit of a moth flame situation there. After that they set off a bunch of really beautiful fireworks, everyone sitting on the drive way. It was Norman Rockwell (of this era) normal and absolutely blissful. 

I just have to take a minute and to acknowledge how grateful I am for that. J is by far not neurotypical but he's not excluded or treated differently at this point either. Our friends and family have never turned us away or not respected our treatment modes or scoffed at our ideas. I know that that support alone has helped us as a family and helped him in turn make the significant progress he has made. After seeing so much sadness, so much downtrodden aloneness I feel grateful for the small group of people we have. I have a lot of days that are like "its 10am and I'm exhausted" ( but I guess the great thing is that ALL the days aren't that way. I don't feel totally adrift, heartache palpable to a near strangers. I'm not lost with nothing to do, wallowing in the choices I should make. In fact I've got TOO much to do. I guess it's just another Autism dagger that cuts both ways, as long as there is something to do, well you've got something to improve upon and that means that improvement is possible.

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