Thursday, September 19, 2013

Autism Troubles, Quilting Solutions.

 I've been doing a lot of spinning and knitting lately. Just recently got back into quilting.

It's been a crazy handful of months. There was the usual driving Nicky to school an hour away, twice a day, for 4 hour (or more) driving days, twice a week. It's a school for kids with severe autism. His school is worth it and I hope he goes back there soon. He stopped going in June. 






("Big" quilt I'm making, almost twin sized, for Nicky. I'm making Tony a rainbow one when this is done. Machine pieced, hand quilted.) 


Nicky was doing far better in June than he was in January. In January, he was anxious and angry; aggressive and destructive. He was happy and really kind of manic in June, less aggressive but more 'trolling' like with practical jokes and destruction. He ripped a window out- not the glass, but the entire window. The frame and all had to be replaced. We rent and we haven't been billed for it, thank goodness. At least not yet. Should be $700 or so.
   Nicky's behaviors were dangerous, even though he was happy and not anxious. He was on a waiting list for six months to get into Spring Harbor Hospital. He finally got in, in June. He stayed till August. I don't feel like they got much done with him behaviorally, and he regressed with toileting, but they did fantastic with PECS and they were very very sweet to him, and they helped with his placement at Kidspeace. The grueling 2 to2.5 hr drive each way to see him was punctuated by the hospital not letting Tony down to visit him on the unit, although other patients' siblings could go. I feel like they came up with too many excuses about why Tony couldn't go and it really had to do (shockingly!) with Tony being adhd/ having autism himself. By and large, thought, it was a beneficial visit.


   So now,  my 9 year old, barely verbal baby boy is at a temporary placement in Ellsworth. 
And, despite this mama's heart aching for him, I'm relieved, very happy, and very hopeful. This is what he needs, and what we need to help him live with us from here on out. Our home had become rather ghetto, with kitchen drawers ripped apart, two doors off the hinges, and pictures taken off the walls. I've replaced three toilets (myself, even! I'm an expert plumber now. ;), two mattresses, an oven door and a computer monitor in the past year and a half. Most of their toys got thrown out the window and either ruined or I've only found parts of them- I'm still in the process of replacing them.
(get me started on the legos that the other kid flushed... haha)

I gave up on buying tv's, but we're going to try another one, wall mounted, like they have where he is. I don't CARE though, I'm listing all this for a snapshot of where we've been. I love him so much I just don't care.


But he's so happy where he is, despite obviously missing us when we take him home on weekends. Visiting him during the week is tough because of Tony's school schedule and Mike's work schedule. The one time we snuck up during the school day for lunch was a bad transition for him. He doesn't talk on the phone, but we do try. 



 Tony misses him as much as we do. During one tough transition with Nicky, Tony cried for him. My god that was heartbreaking. I was in tears, too, that day. Where Nicky is now, is on a lake, looks like a camp, surrounded by forest. He can go walking every day. The staff treat him like family. He has a few who pride themselves on being "Nicky whisperers" and they come out and say they love him. His psychiatrist today said he's quite sure we can get his aggressions to cease. I hope that Nicky can be aggression free and able to function well at home. I don't think he'll ever do well in big stores (join the club, kid) but I don't see why I have to subject him to that. Maybe in a few years he can. He's more emotional now, and he's becoming more and more verbal. He's on at least stage 5 of PECS and he's showing the ability to do even higher levels.
 We haz hope!


In the meantime, to keep my sanity, I've been sewing. Not perfectly, and quite horribly in some peoples' perspectives, I'm sure. Fuck them, I'm having fun and I'm making quilts.



Stars for Nicky. Started ages ago, finally finishing it up this week. Has to be mended in a few places because it was thrown into the wash quite a few times. Things happened. I also learned why you should not leave the safety pins in when you wash them. *Twitch* *Maniacal laughter*











Pinwheels. Why I'll never machine quilt again. Probably going to be a lap quilt for the car. I love orange.


Jess




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