Autism

A Time of Perpetual Transitions: Adolescence

Published June 05, 2009 @ 12:35AM PT

Bridge with flooding river from http://www.floodcontrol.co.riverside.ca.us/images/santaana69.jpg
The University of Georgia has received a four-year, $800,000 grant from the U.S. Department of Education to be used to train teachers to teach high school students on the spectrum. Exactly what that training will involve isn't too clearly specified; according to yesterday's Fort Mill Times:

The university will use the money to fund fellowships for graduate students to take specialized courses and spend time in public high schools in Gwinnett, Clarke and Madison counties through UGA's Collaborative Adolescent Autism Teacher Training program. The university had been focusing on teachers who work in elementary-age classrooms but wants to expand its reach to high school.

Yes----as my son has advanced from elementary to intermediate to middle school, it's often seemed that (after Early Intervention and preschool) there's a tendency for people to throw their hands up in the air and say, "Now what? We don't know?". I know that parents of newly diagnosed, young children feel lost and helpless (we certainly did). Early Intervention is pretty well established here in New Jersey (I even drove by a sign yesterday for a center that provides "Early Intervention" specifically). When Charlie was about 7, there was a lot of confusion about what sort of classroom he needed (he still needed 1:1 teaching and ABA, among other things); the result of this was that we moved to another town so he could be in their ABA program. He's almost made it through his first year of middle school and talk about tough!

Aside from the usual "stuff" (never a dull moment around here---what would life be like without seeing the phone number for the school flash on my iPhone screen), he transitioned to a huge (1400+ students) middle school and became an adolescent seemingly overnight, or at least there were times this year when Charlie seemed to have grown an inch in the past 24 hours. Now we've thinking a lot about sex education and safety.

So it's great---it's necessary---to be training teachers to teach high school students on the spectrum but I'm going to make a big plug for more training for the middle school years. After the past year, I've started to feel that these are the make it or break it years, so to speak.

Being in middle school = adolescence = being in a state of perpetual transition.

Charlie struggles with transitions as it is, from getting off the bus to coming inside school or home, to getting out of a chair to do something we've asked him to, to (one of the hardest things of all this year) getting out of bed to get on the 7.40am bus. A great part of the past school year has been devoted to helping him handle these better and so far, thanks in part to using activity schedules using pictures much more, he's been doing better. It's not just that we have the schedule set up at home and in school; Charlie's also been learning to use the schedule on his own. Teaching him to do so---to get up from his seat, go to the shelf or table where the schedule is, open the little binder, find the page he's on, take out a card and go and tell one of his teachers what he is to do next: That's taken a lot of teaching.

The schedule, used on his own, is the kind of thing that is laying a foundation for the future. Someday Charlie is going to need to do things on his own, whether at a job (I'm going to keep hoping he can get one; I will not stop hoping) or wherever he's living. He's going to be an adult and need to take of himself, to the extent that he can.

I've been reading more than a few stories about boys on the spectrum---minimally or non-verbal, having severe behavior problems including agressions and SIBs---who are around Charlie's age and whose parents are considering a residential placement for them (see the start of a recent essay on Babble). Once again, that's not what we want for Charlie, or what he needs---what he does need is a school and educators who understand him and how he needs to be taught, and who understand something that I'm trying to grasp myself: Adolescence and the middle school years. How do you best teach students on the autism spectrum and guide them through a turbulent, transitional time of life? Charlie and his classmates (all male) are all going through puberty now and teachers need support and strategies (as do parents).

Our town has a special ed high school program that is geared towards vocational training. It's the kind of program that Jim and I would like Charlie to be in, if we can just get him through the next few years. As his parents, we know that, much as we rely on the school district and Charlie's teachers and therapists, we're the ones with the biggest responsibility of taking care of him, overseeing his learning, teaching him, guiding him through this time of intense transitions. What he needs is not only the appropriate school program, he needs to be with his family when he's not in school----as an adolescent, he is still a kid and that's why he needs to be at home.

I mean, I don't want to miss any minute of my boy growing up----every moment is too precious and before I know, he'll be 21.

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Comments (8)

  1. Hai Dang

    I am touched by your courage and love for Charlie.  He is a very lucky boy.  You are right at the end parents are "the ones with the biggest responsibility of taking care" of our children.  Hope is a powerful word, and we should never say never.  I do believe Charlie will have a job and be more independent as he passing through these turbulent years of adolescence and entering the adulthood.  My oldest son - two years older than Charlie and high functioning - is going through the same things.  I do have those days I just want to be on an island by myself; but like you, I do not want to miss any minute of seeing my children growing up.  My children autism has given me a chance becoming a better parent and enjoying my times with my children. 

    Posted by Hai Dang on 06/05/2009 @ 02:10AM PT

  2. Kristina Chew

    Thank you so much. We've been through so much with Charlie as I know you've been with your three---it's not easy and often very worrisome, but I know I'd do it again. I'm definitely a better parent and person from the experience of raising him.  Thank you---

    Posted by Kristina Chew on 06/05/2009 @ 05:51AM PT

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  4. lisadom dom

    Kristina, I am always heartened to share our trials with other parents who have typical pre-teens. Sometimes it is not always about autism. Sometimes it is just about being a "growing" Boy (literally growing in places that a mother doesn't want to know about)
    And the advice my sister gives is based on just that, what her typical teen needed to know and learn. It's just that we have to extrapolate that advice into social stories and Picture based Q & A as in "where is it okay to be naked?"
    Having the iphone means I take photos all the time of the places one must keep their weiner covered, and share them with his supervisor via email so she can incorporate them into the task analysis. We can then use the same language when correcting inappropriate behaviours  eg: "is it okay to be naked in the kitchen? - Nooooh, where is it okay?"

    My favourite advice about the "where it is okay to "touch" the wiener, vs, where it is okay to "hold" the weiner while urinating"

    came from Sister Wolf:

    "the Big Penis belongs in the bedroom"

    I am thinking of having that put on a t-shirt.

    xx

    Posted by lisadom dom on 06/05/2009 @ 04:06AM PT

  5. Kristina Chew

    Have been using my iPhone in a similar way and taking photos of all kinds of things for Charlie; just showed him a bus photo this morning and he got out of a chair and ran down the steps, me saying not a word.


    You could have that phrase on the front and something else on the back..........


    Yes, while writing this post, I kept thinking: I'm just writing as the mother of a 12-year-old male---if Charlie were not autistic, I'd be worrying about a host of other things besides the ones I already am!

    Posted by Kristina Chew on 06/05/2009 @ 05:48AM PT

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  7. Kevin Ayres

    Just FYI on the UGA program, the program focuses on "adolescents" with ASD and covers middle school through high school needs built around the need for beginning transition plans as early as possible for optimum success. So folks interested in teaching kids with ASD at the middle OR high school level should contact via http://www.coe.uga.edu/csse/spe/caatt.html or contact me directly at kayres@uga.edu. We have funds to support folks who are from out of state that would like to come to UGA to study in this program. 

    Posted by Kevin Ayres on 06/05/2009 @ 09:14AM PT

  8. Kristina Chew

    Thank you, I was wondering if the program also extended to middle school. That is great to know and thanks so much---indeed, middle school and high school seem to be kind of one and the same for my son, as far as planning and curriculum.  

    Posted by Kristina Chew on 06/05/2009 @ 09:49AM PT

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  10. Cody Boisclair

    Perhaps, as a starting point, they should talk to autistics at the University of Georgia? ;-)

    Posted by Cody Boisclair on 06/05/2009 @ 01:42PM PT

  11. Kevin Ayres

    CodyWe budgeted funds as part of the grant to include local folks with ASD on our advisory board. So if you know of people in Georgia who would be interested, please pass the info on. We only found out about this at the end of April and are working hard to get things in place for fall. We have several parents on our advisory board already but are interested in finding young adults to participate as well. Please email me directly if you know of folks. kayres@uga.edu

    Posted by Kevin Ayres on 06/05/2009 @ 06:36PM PT

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Kristina Chew

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.

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