Susan's Blog

Saturday, March 30, 2013

The Dreaded Cycles

Nat’s anxiety has returned. Or should I say, Nat is anxious these days? With someone who doesn’t have autism, I would say the latter. With Nat I say that his anxiety has returned, which gives away my own anxiety about what I used to call Nat’s “cycles.” I used to think of Nat’s psychological statein terms of the famous seven years of feast, seven years of famine. We would have periods — of 3-6 months usually — where Nat would try new things, answer questions, keep calm (not in the cliched British sense) and go with the flow of our whitewater family. Then, inexplicably, there would be another phase. Nat would stare out the windows at the streetlights and ask repeatedly for them to go off if they were on too late into the morning. Or he would watch Ned’s feet to make sure his shoelaces were tied. Or he would walk quickly about the dining room until Ben finally came in to have his breakfast.  Screaming, repeating questions ad infinitum, trying to get something out of us that probably did not exist. We did not know what caused it and we would try all those things that people tell you to try when your life goes out of control: (supplements, diets, regimens, etc.). I would get articles from well-meaning relatives that would be about scientists’ new optimism about mitigating the symptoms of autism. It would always annoy me. There’s really nothing new under the sun that I’m going to try for Nat. I’m sorry. I tried so much when he was younger. Looking for — what? a cure? a change? How do you measure progress if you don’t have a baseline?

Well, for the first time in years, as I said, Nat’s anxiety is back. Unlike those other years, I know why. Maybe I even knew why then but it was all so scary to me — having a kid who simply could not communicate pain, discomfort, anger, desire. He would jump up and down, screaming, biting his arm, hitting us, clawing us. There was no place to be that felt safe. Put him in his room and pull the door shut and hold fast to the doorknob for — a minute? How long was this supposed to last? How do you gain control. It was so fucking scary. You just watch, cry, or duck.

Nat is anxious because they have not yet moved into their group home — the new house, that is. Yet they had been told months ago that it would be “soon.” But unfortunate event after unfortunate event has prevented this from occurring. Now there has been a problem with the plot plan, the permits not being pulled, and various other P-based pain.  There have been no tantrums, no arm-biting, no screaming. But he is clearly anxious. Wide-eyed, hand wringing nervous.

Poor Nat. Oh my God. I want to comfort him but he will take no comfort. If I look at him empathically he says, “Noooo.”  What he needs is predictability, Goddammit, haven’t we covered this already? How can it be that his service provider has messed this up this badly? Of course, now that the parents have yelled and screamed a lot, there has been progress. They will be moving “soon!” Yay, soon.

Meanwhile Nat is running around like a squirrel asking with his eyes when his nervous living situation is going to smooth out again. And of course he looks at me the most. I am still Mommy The Great and Powerful. That melts my heart and scares the shit out of me. I am still the main one in his universe who really truly has got to keep it together. And we all know how stable I am.

Plus, even if I knew what to say to him, he’d probably still say, “noooo.” So I guess we are going to have to wait until the cycle changes back.


You rock, Mommy. I hope that peace and predictability settle onto your shores very soon.

— added by Gemma on Sunday, March 31, 2013 at 10:36 am

Mine isn’t that bad but it’s now April and has no placement for Gr 7 in Sept. It’s the school’s fault and procrastination. Highschool they start in Sept, public school as late as possible. Oh, but because he’s non-verbal he’s too “stupid” to realize what it going on. I sometimes wonder if that isn’t their attitude although they’d never say it to your face….

We actually had tears in the village restaurant last night… why?? I suspect because he’s been telling me for weeks he doesn’t want to go to school.

I told Dh I’m done being nice. The meeting was in Feb, they didn’t put in for OT or PT like they promised – it’s done now but we’re waitlisted until June – and we were suppose to know in March where he was going for Gr 7.

I have no suggestions…. except to share a bottle of wine and a “b….ch” session on my front porch… but I am tired of this crap and mine’s only 11.

Hopefully things come together for his new group home soon. Ironically, I have had the most difficulty with the one’s that claim they know more than I (autism, spec ed people) than those that understand they have no idea. I also trust them the least to do things for us. Shouldn’t be that way.

— added by farmwifetwo on Sunday, March 31, 2013 at 11:43 am

We’re going through strange stuff too…anxiety is such a drag. I know that feeling when they look at you for help, and you have no idea how to help them!

— added by Candy on Sunday, March 31, 2013 at 7:39 pm

When we have an indefinite for Charlie,but he really needs to know when something is going to happen, I will set a date very far in the future. So far that it will certainly happen before then. Is it possible to say, “Your home will be ready by January, 2014 and have him be ok with that?

Just brainstorming…

— added by Janet Bowser on Sunday, March 31, 2013 at 8:56 pm

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