Tunnel vision

Our life with autism has been steadily heading toward a dark tunnel, and I’m afraid the train is about to arrive.

While Little Miss seemed to be coming along so well up till this year, fourth grade has made it clear that she has real issues I’ve written off to language delays or other “fixable” things. We’ve had to come to grips with the fact that despite the help she gets at school and TSS/BSC services, one of two things is true: either the language help that she needs just isn’t available in this area, or that she really is limited to practical knowledge that will enable her to care for herself, but she’ll never be an academic scholar, no matter how smart she is.

That realization, while heartbreaking, pales next to the other situation. The past few weeks have made it clear that The Captain’s world cannot be moved by anything but his own impulsive desires. He does what he wants to do when he wants to do it, despite the rules and without regard for others. Earlier in the year, these incidents were limited to school hours, and we thought the “experts” could deal with that. I mean, despite our requests not to have an aide assigned so that he could learn to take care of himself, they put one with him. Seventh grade with an aide all day long. Not geared toward making a boy gain a lot of friends. But, again, we thought as long as the incidents remained at school and he continued to follow the rules at home, we could go on.

This week, however, in a remarkable display of just where his head stands, we’ve discovered that he is near sociopathic. He acts without regard for consequences and how his actions will hurt others.  As we peel back the layers of “what if,” we can envision some truly horrifying results, especially with an impaired sibling who’s coming into her own puberty issues.

When his mobile therapist came this week, we had a long talk. She reminded us at length that this is part of the Asperger’s diagnosis, while she reassured us that we’ve been doing all we can to help. She had a long talk with the Captain. Then she quit.

Part of mobile therapy, obviously, is the same drive that is part of helping an alcoholic: the patient has to want help and be willing to admit things aren’t as they should be, and be willing to make changes.  She says after nearly seven months with her, that’s just not happening. Perhaps he can’t process and assimilate the information, or else he can’t apply it. She believes, as we do, that he chooses not to. This after eight years of TSS and mobile therapy, sometimes at 35 hours a week.

So we’re heading into the tunnel, with a very small number of alternatives available. The therapist suggested respite, but there’s no one that will step up for that in either family, not for long enough to make a difference, anyway. Until he actually hurts someone, none of the facilities around here will be interested–we’re not sure we want to wait till that happens. Certainly, we’re open to suggestions. Got any?

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9 thoughts on “Tunnel vision

  1. No suggestions – my kids are actually younger than yours. But I get it. The limited services. The desire for answers. The when to say when and then what? One kiddo’s fantastic Kindergarten teacher has maybe been too good – what’s he going to do when someone starts expecting more of him; what if fantastic = pushover for a kid with autism? And the other kiddo seems like he’s just being shuttled forward by the school. What’s going to happen when a teacher says “enough”? Will he be special ed tracked? We think he’s too smart for that, but smart is nothing without recall and fine motor skills.

    So, yeah, I hear you. I keep jerking myself back from that tunnel with no light. But clinging to the right now isn’t really going to help these kids.

  2. Your story sounds like so many I’ve heard with kids with asperger’s. There seems to be this type of gap in services, finding appropriate classrooms and school situations, etc…you are not alone by any means..

    I have a nephew (through marriage) who also has asperger’s and had a lot of tough years—elementary to middle school and through early high school—he was always getting into trouble and had lots of problems. But then, he developed a strong group of “good” friends and kind of “came into his own” during his later years of high school… He started playing the guitar, got his driver’s license…and is now attending college…and from what I’ve heard, he’s doing great. I actually saw him at a family reunion and was impressed.

    We don’t know what will become of our kids — as you know, I have two with autism and dev. disablilties — all we can do is work hard to get them through–day by day, and hope that they find their way…..

  3. I’m sorry, I have no suggestions. I just wanted to let you know I hear what you’re saying. Your family will be in my thoughts.

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  5. you are good parents, facing the most difficult realizations with strength and rational thought. i’ve got no suggestions – but wanted to let you know that from where i sit? you done good… not the stuff you get to read about in the obstetricians waiting room, with all of those soft focus pictures of mothers nursing infants, is it?

  6. Oh, Babs, I’m sorry to hear that. I don’t know how you feel about medication, but so far we’ve been seeing some really positive behavioral changes for Nigel with just a low dosage of Risperidone. I’m glad I decided to try it for him.
    I’ll be thinking of you and hoping for the best for your family.

  7. maybe when me and rach get a real place down in nc we can take them for a vacation? thats all we can do. sorry mom

  8. The “Then she quit” really shook me.

    Is there no one else available who can take on the mobile therapy. The lack of ability to process must be very difficult for those of us who do process to understand.

    Really hope you find some help with this.

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