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Why we stay in sometimes Part 2

People have asked me why I am telling Aidan not to “hug” mommy in the video–actually, his entire team is trying to teach him appropriate touch, because in a meltdown he will run up to someone to squeeze them and want them to squeeze him back for sensory input. This is because this “hug” calms his overloaded sensory system–if you saw the Temple Grandin movie, she made a hug machine for this very purpose, because she needed to calm herself. Problem is, Aidan doesn’t discriminate who he will do this to, and umm, I live in L.A. and can you imagine him doing that to the wrong person who doesn’t know him? I have clients who have been detained, restrained, beaten up, etc. for this behavior. Our approach is to instill a system of him ASKING for the sensory input he needs, since he has hurt some of us doing this. For instance, he ran into his dad’s bedroom and jumped on top of his dad’s girlfriend as she was sleeping to squeeze her. My 6-foot tall ex-husband had to wrestle him off. Glad she got to experience a little of my daily life! 😉

Oh, Aidan. Where do I begin? That previous video was a fit he had this weekend with me and one of his team members who was coming over to work on adaptive living skills (hygiene, safety, etc).

First: Aidan is not high-functioning. And yes, I hate that term. He cognitively tests at around a kindergarten level. Emotionally? He’s somewhere between a 3-4 year old level. He will turn 13 years old this year.

Aidan headbanged and rocked as a 3 year old. About 20-30 years ago a child of his cognitive level would have been labeled mentally retarded and put away.  He would have had MUCH lower life expectations and been segregated all his life and that would have been that. So yeah, I feel like we have come a long way despite it all.

We are working on him understanding basics like when someone else is sad or even the mechanics of taking turns (he tends to scream out “My turn, my turn!” when upset, because he’s still trying to get what that even means). We have just weaned him off of using sound-reduction headphones. His hearing is heightened like that of a dog, he can hear sounds the rest of us can’t, which therefore drive him crazy in some social situations. Obviously, if you can’t tune out sounds like other people, you won’t be able to even walk down the block because a bus, bird, car honking, etc. will stop you. We have chosen to work on desensitizing him because this is the world he lives in and he can’t live in a bubble. And yes, we get more meltdowns because of it. (Yay!)

Second: Aidan has had and continues to have, a number of interventions, ranging from ABA (applied behavior analysis) to DIR/floortime, to reward and calendar systems using visuals so he “gets” what’s expected. We have 6 in-home people who come in and out to assist with things like soaping himself (applying enough pressure on his body to actually wash it), brushing teeth, etc. He has a 1:1 attendant during the school day. He has an attendant after school. He has a team of therapists and evaluators and a number of supporters. And then there are the neurologists and other folks.

I wish (how I wish!) that this could simply be caused by bad parenting. Because then I could just change myself. Yet the other day, I sat with 2 behavior therapists who were a bit baffled as to how to help us because 1) I DO have discipline and reward systems in place, 2) they are consistent, and 3) I know behavior well. I organized parents for ACLU around student’s rights within the public school system and problem behavior in institutional settings. I can take data and do an ABC chart (antecedent-behavior-consequence) as easily as any of them. I can argue on behalf of intensive services for a child with these problem behaviors and get them all the services they need, too.

But sometimes, even with all the interventions, parents have to face the fact that their kid takes a lot longer to get things and the bottom line is my kid’s growing up, he can’t communicate well–he can’t even use the pronoun “I”, and things can and will go wrong. This is the same kid who came out of a public library bathroom NAKED at age 10, to ask “6 squares?” because he doesn’t know how to wipe if you don’t have an exact # of squares he should pull off.

Incidentally, we do spank (I come from a working class Mexican background–chanclas, anyone?) but discipline is challenging is if a child doesn’t actually understand consequences, that doesn’t really work to instill anything. Neither does reasoning. Only consistency, clear expectations, boundaries, blah blah blah work.

I have clients with kids with AU who have had to put interior deadbolts in their homes to keep their kids from wandering so they could get a full night’s sleep, who have had to strip homes of curtains so their children don’t EAT them (sensory needs), have had to take apart beds down to the mattress only  so their children don’t hurt themselves in a rage. I have a friend whose mid-20’s son with AU didn’t get his pizza on time at a restaurant and got so agitated with the wait that he ended up attacking her. And a police officer. I know of a 6’2″ father who regularly gets black eyes from his teen son with AU in scuffles.

The bottom line is that there are many, many parents who are struggling with keeping their kids, especially those with autism, out of instititutional care. The last numbers I saw were that it would cost the state about 100k a year per client with disability if we turned them over. And that is for life, so till about age 80. Think about that and the toll that is on our system, if families were to give up and do that. Yet parents struggle to get $300-500 a month of respite care to keep their kids at home (where they belong) and learning basic skills, such as taking a shower, going to the bathroom, and just learning to live independently.

I for one have shifted my dreams for Aidan: I just want him to be able to live on his own one day and work somewhere. I don’t care where (he would’ve been a GREAT agitator, some of my community organizer friends would agree), I just want him contributing in some way. We have a long way to go. His dad and I have determined if we can get to about a 10 year old emotional/cognitive level with him by age 20, all our work will have been a success. Because 10 year olds don’t run to grab someone on the street because they need sensory input, you know.

Lastly, Aidan is going boating with me and a new male suitor (woo hoo Gloria!) on Saturday. Aidan looooooooves water but hates seagulls. Dangerous? Crazy? You’d better believe it! But life is meant to be lived, people. Let’s see what Aidan’s made of. Hell, lets see what this Navy man is made of! 😉

Till next time!

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