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Autism Vox

Teaching Strategy #2: Preparedness

by Kristina Chew, PhD on March 1st, 2007

“Emergency Preparedness” is the topic for this month’s b5media.com’s Science and Health Channel’s earthquake country—northern California’s Bay Area—I have long been familiar with the notion of the earthquake survival kit. My parents have had theirs for a long time, a large Rubbermaid container stocked with bottled water, flashlights (my dad regularly checks the batteries), canned food, towels, etc., etc.. And I guess I could make an analogy and describe something like a “take your autistic child out into public places” survival kit or a “starting up your home therapy program” survival kit or “sensory need” survival kit, and I can see the need for the latter two.

But as for the first—-the “take your autistic child out into public places” survival kit—on reflecting tonight what I might include in such a thing to stow away in my car or in my bag, I realized that I do not carry such a “kit” before. “Preparedness” regarding being “out” in public with Charlie used to mean having certain items in case of emergency: Extra clothes, a squishy ball or two, a picture schedule, snacks, something to drink. “You never know” used to be my adage: I wished always to be ready for an “earthquake“: Just when you assure yourself that “everything is fine” and you can drive home without a worry for what’s going on in the backseat, or when you let out a sigh of relief that you have found the right school placement—something (a thunk from the backseat, news that the wonderful school is closing) happens and you feel yourself in emergency mode again.

I will be honest: When we first thought, back in 1998, that “something was wrong” with Charlie, when we heard the word “autism,” it seemed that every day and every moment was an emergency, a crisis, a catastrophe on the brink. My sense is that this feeling is not uncommon among parents of children newly-diagnosed with autism, and perhaps among parents of autistic children in general, whose minds are forever leaping ahead to a tomorrow—-when the child is an adult—that they wished had never come.

At some point in the past few years—maybe even in just the past two years, since I have been writing about Charlie and autism publicly—I realized that all my attention to “autism emergency preparedness” was interferring not only with my enjoying each day with Charlie and, too, with my being able to learn about Charlie as he is. I was overly focused on worries like “what will happen when he is an adult if he cannot read or talk too well?” I was not simply missing the forest for the trees; I had my eyes focused on images of what the youngest saplings might look like in 30 years. By preparing for a future I can only speculate about, I was not able to get the watering done and observe the new leaves growing on the branches.

Around the same time, I started to realize that it was not really helping Charlie to bring the “autism survival kit” items. What helps us when we go into public places—the trains rides and walks in the city I have written about on Autismland, restaurants that are not McDonalds, supermarkets and the fluorescent-lit corridors of Target—is, for lack of a better word, a certain attitude. Certainly, Charlie can become overwhelmed by sounds or senses or smells that he encounters and, while we try to talk about these and his reaction to them in advance or in the moment, Charlie may not always be able to control his responses.

But I can. I can say to myself in advance, “You’ve got to stay calm and ‘Zen-like’ every moment—to let Charlie know that nothing rattles you, you’ve seen it all before and, even more, to let anyone who feels like staring know that nothing rattles you.” it helps both of us greatly if I do not start thinking “today is ruined” or “how can I carry on?” Thinking and acting thus was how Charlie and I got through an uncomfortable moment at a grocery store back in December when

instead of bracing my body against his twisting back and fighting with every last ounce of strength I don’t have to keep him still and keep his head from the floor, I had tried to shape myself along with the flow of his energy—-to lean back in, or with, or together with his body, livid and practically sparking with desperation. It certainly took less out of me than attempts in previous years to hand onto a thrashing boy and I am sure I used to hold on so hard because of my own most despairing fear: What will I do when he gets big? When he is bigger than me?

As a result of my not going into “emergency mode” and not fighting against Charlie in the midst of a difficult moment, he calmed down and was soon walking around the store carrying the shopping basket, and (as I wrote in December):

I found myself not particularly enervated or upset.

The grass must bend, when the wind blows across it. [Confucius’ Analects (XII.19)]

Or, the art of learning about letting go.

So I guess I can say that I feel I am prepared when I remind myself that anything can happen when we go out, but that it is just something that happens and we can move on; that life with Charlie is one great adventure. And Charlie himself, as he grows and he grows up, is more and more prepared for whatever he might face.

And I think, thanks to him, I may be, too.

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POSTED IN: Parenting, Teaching Strategies, Weblogs

18 opinions for Teaching Strategy #2: Preparedness

  • Marcie
    Mar 1, 2007 at 10:04 am

    Yay for Zen! I’m still trying to do something similar when dealing with my father who’s angry most of the time. But when you can’t multi-task, it’s hard to remind yourself to calm down when you’re busy being upset.

  • The Homely Scientist » Sci-Health Theme day–Being ready for an emergency
    Mar 1, 2007 at 10:40 am

    […] Kristina, always the uber-blogger at Autism Vox, gives us tips for being out in public with your autistic child.  Heck being prepapred when out with any child is a good idea! […]

  • mumkeepingsane
    Mar 1, 2007 at 2:29 pm

    I’ve recently given up the “what if…..when he’s older” thinking. You are indeed correct that it was making me miss a lot going on in the NOW.

    We’re learning, over time, to go with the flow when we’re out in public. Patrick certainly responds better to a peaceful mom and dad and definately picks up on any tension radiating from us.

    I too tried to always be prepared. But lately I don’t pack all those “what if” items. It was making me too tense. I was picturing the worst case before we even got out the door. Expecting, in a realistic way, the best outcome has helped us all a lot. And, when the earthquake comes, we’ll all survive it and go on.

  • Club 166
    Mar 1, 2007 at 5:24 pm

    There’s a house down the street from us with a stand of bamboo about 20 feet tall. When we had an ice storm about a month ago, it was all mashed to the ground. As soon as the ice melted in a couple of days, it sprang right back up.

  • Daisy
    Mar 1, 2007 at 6:32 pm

    I, too, used to travel with an “emergency kit” of spare clothes, wet wipes, and more. Now that Amigo is 15, we only take an emergency kit on long trips, and he usually knows what he needs as well as I do. Of course, his priorities are CDs, headphones, fresh batteries for his armband radio, and other teen items.

  • abfh
    Mar 1, 2007 at 7:51 pm

    Hi Kristina. Wonderful paragraph about the forest, the trees, and the youngest saplings in 30 years. I’ve quoted it in my latest post:

    http://autisticbfh.blogspot.com/2007/03/autism-reality-calculus.html

  • Brett
    Mar 1, 2007 at 9:31 pm

    “So I guess I can say that I feel I am prepared when I remind myself that anything can happen when we go out, but that it is just something that happens and we can move on; that life with Charlie is one great adventure. And Charlie himself, as he grows and he grows up, is more and more prepared for whatever he might face.”

    This is autism every day.

  • sucheta
    Mar 4, 2007 at 6:51 am

    Hi Christina,

    I too feel the same way. By sheer experince only I have learnt how to bow n bend as per my 6 yr. old sons pressure and remain a stoic/ignore both his tactics as well as the curiosity of others.however, the concept behind the method has got more clear by reading you.

    Sucheta

  • Kristina Chew, PhD
    Mar 4, 2007 at 12:53 pm

    Sucheta,

    Thanks so much—-hope your son is doing well. Experience teaches a lot, I have to say.

  • Julia
    Mar 4, 2007 at 8:51 pm

    Working with instead of fighting against gets you where you should be more quickly, yes. I’ve been learning that, myself.

    None of my kids is toilet-trained yet; we have a big diaper bag for excursions. Sometimes I grab clothing to stuff in it, sometimes I don’t; the only essential item besides the pullups and the wipes is a cup for S., because he’s very particular about what he’ll drink out of, and I’d rather have him hydrated than not. (I know I’m miserable and more prone to being overwhelmed if I’m a little dehydrated, and I don’t want to contribute to anyone else’s overload.)

  • sucheta
    Mar 6, 2007 at 10:34 am

    Hi Christina,

    I would like to know about the success rate of a 40 hr./week ABA Program and what r the things that are included in such an intensive program for an Early intervention case. I would also like to know about the success rate of an RDI Program.

  • Kristina Chew, PhD
    Mar 6, 2007 at 10:47 am

    Sucheta,

    I am always hesitant to quote figures because there are so many variables as regards each therapy. The figure of a 47% success rate (= mainstreaming in school and a child being “indistinguishable” form their peers) is often cited in regard to intensive ABA. This figure is only from one study and I don’t think there has been long-term follow-up to what happened to all the children in the original study. All of our children start at a different place: My son Charlie had no speech when he started intensive ABA and he did learn to talk thanks to it, but our original ABA (Lovaas) provider was hesitant to say that Charlie had a lot more challenges than some other children.

    That said, ABA has been very successful for Charlie. He likes the structure and the orderliness of it, and I think a behavioral framework has been a good way for us to approach some of his behaviors such as head-banging (and ABA, in combination with medication, has helped to get this under control). We have been through many ABA consultants and many, many, many therapists; some of the consultants have been better than others, to put it bluntly. In Charlie’s case, ABA has helped him to learn and be able to do things like going out in public to the store and to movies. He struggles a lot academically, but, again, the structure of ABA seems to help him a lot.

    About RDI, these two blogs (both written by mothers) have lots more information:

    http://www.thismom.com
    http://momnos.blogspot.com

    Hope this is of help!

  • sucheta
    Mar 6, 2007 at 3:24 pm

    Kristina,

    Your reply has helped me to take a final plunge into intensive ABA Therapy for which I have communicated with the Verbal Behaviour Specialist today itself.We in India, dont get adequate infrastructure and specialists and State funding is nil.Earlier, we had consulted an RDI specialist from USA,which finally wasnt of much help. SO I was at a loss about selecting a particular method.Thank u for your help.
    Sucheta

  • Kristina Chew, PhD
    Mar 6, 2007 at 4:00 pm

    Sucheta,

    I hope things work out—if I may ask, how old is your child? Please let me know if there are any resources or information that you might need—-we actually did not get any funding to do ABA with Charlie when he was young. For my son, it was important to start with ABA, as he did not have any language and also really liked all the structure.

    Best wishes from Kristina

  • sucheta
    Mar 7, 2007 at 3:07 pm

    Kristina,

    Thank u v. much for offering so much of help.Well, my son is now six yr. old and had been undergoing intervention since he was not even 3 yrs– first TEAACH Method for about an year and then Verbal Behaviour for rest of the time alongwith an additional stint of RDI since July 2006 and a little bit of SIT.But the whole thing wasn’t intensive enough–roughly about 1 hour a day therapy and 1 hour at home and the whole process was somewhat haphazard and there wasnt much coordination amongst them.He had speech, 2 words, at the beginning but was lost,then again came back and went.After following VB Method for about 9-10 months echoics and then some language like 2-3 words came. But speech, instead of progressing, often regress according to lack of motivation and again improves a bit and again goes away.It is quite difficult to keep him motivated and he has a lot of self-stimulatory behaviours.This is why I am in search of something better e.g. 40 hr/week intensive ABA Program or something that might bring some more improvement.Although I have Mailed to our VBA Specialist, I am yet to receive any reply and dont know what type of program he needs.

    With regards from Sucheta.

  • Karen
    May 7, 2007 at 10:20 pm

    Kristina,

    My son is 4 with autism. I just about cried reading about the autism preparedness kit. You describe what I do to a T. I never go anywhere without having a contingency plan for what if “X” has a meltdown situations. I just wish people wouldn’t stare at me like I’m a terrible parent. I want to wear a big sign that says

  • athina
    Jul 26, 2007 at 1:33 pm

    Let me share my experience with you. As all of you, so did I, always tried to be prepared for what might happen when out with my son and as a result I carried a huge bag with ‘necessary’ stuff with me. One day when in speech therapy my son asked for water and I didn’t have his blue cup with me. Until that time, he only drank water from his blue cup. That day though, him being in a good mood, as he loves his therapists, and after his demanding of water became intense and extremely loud, he drank water from a plain white plastic cup that the therapist was kind enough to offer to him. And he didn’t hesitate a moment! I was astonished! Another day, again while in therapy, he asked to go to the toilet. I was panicked because I didn’t have his blue toilet seat with little fishes on it that he always uses. I was afraid he would refuse to use the toilet and, as a result, wet his trousers. Nothing like that happened. After asking for his toilet seat and me explaining that it was at home, he eagerly agreed to use the toilet and only asked me to hold him while his was doing his thing. I was so thrilled I immediately called my husband, my mother, my in-laws, my closest friend to let them know about his great achievement! I realized that when he is calm and in a good mood, he is always more open to new circumstances and if I manage to remain calm and behave like there is nothing wrong, most of the time I can get him to do almost anything (apart from eating, that is).

  • Bonnie Sayers
    May 4, 2008 at 7:08 pm

    I got a new minivan in March and have no room for the earthquake kit I had in the previous minivan. I went from an extended cab to a sport. I have three suitcases in the house for our kit. Hopefully each one of us will carry one to the car in an emergency.

    One is health and beauty aids along with canned foods, another is all the clothing and photos and the last one is all important papers, school stuff and files.

    I used to keep stuff in the car for an emergency like canned foods, cups, soymilk container, juice box, etc. We never got to use them and instead when cash was low I would get stuff from car to make it till payday.

    I broke it all down in this article:

    http://www.bellaonline.com/articles/art18268.asp

    Essential items for the family.

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