I need break! (#582)

It took Charlie some two and a half years to learn to say that.
Livroom
I don’t mean to pronounce the sounds, the /n/ instead of /m/, the final /d/, and /r/ following the /b/ instead of a /w/. Charlie could say a passable rendition of those three words—I need break—-two and a half or so years ago when he was in summer school in the town we used to live in. He had just turned seven years old and the cheerful, young, energetic staff and Charlie being with the same children he had spent the previous school year with seemed just the right combination for a good summer.

Charlie had a few, then more frequent, “incidents” of hitting his head. The lights? Another student crying? The noise level in the room growing too loud?

It was decided, and it made sense, that Charlie might be needing to get out of the room, to take a break. A “break” card was made (with the PECS symbol of a clock zigzag-broken in half) and placed near Charlie at all times. When the noise level rose, he was prompted to say “I need break” and then taken outside the room.

Once or twice he was said to have asked for a break on his own; all the other times, he had to be prompted by tapping the card or verbally. There were days that were “behavior-free”; there were days ending with the teacher and I in long conversations about “what had happened.” Then Charlie, for the first time since he traded in diapers for underpants at the age of three, began to have accidents, first at school and then at home. I did not know it then, but those summer days were the beginning of some of the toughest times for Charlie, and for Jim and me. Charlie—who had benefited from early intervention in the form of forty hours a week of intensive ABA from the Lovaas agency and numerous of the less intrusive biomedical interventials (special diet, probiotic supplements), who was the boy who still couldn’t talk too well, still couldn’t read, but who could be taken anywhere—became a child with “severe behavior problems” who made “minimal” or “no” progress in all of his academic subjects. Who was really stuck.

Where had we gone wrong?

Lest I sound too lugubrious, there is a happy ending to Charlie’s regression, as detailed in the past few months here, and especially from the time Charlie attended a private autism ABA school for about six months, and then (when that school closed), from the time he entered our current school district, back in June 2006. I am not even sure if “regression” is the right word to describe the past years of academic stasis and behavioral sliding; this is also the period when he learned to go on long bike rides and to swim in the ocean, and in which his speech–especially his articulation—-tremendously improved. But the behavior problems, because they involved self-injury, became dominant and indeed dominated our lives.

Teaching Charlie to ask “I need break” was suggested, and implemented, by verbal behavior therapists, all of Charlie’s school teachers, and his home ABA program (Lovaas again, in our case). This time around, teaching Charlie to ask for a break was not taught incidentally, but as a completely separate program. He started very occasionally to ask for a break in each separate setting, but inconsistently and with prompting. And then, it has been slowly dawning on me, that Charlie has been saying “I need break” on his own since the start of this year. He asked for a break a few times during his piano lesson on Sunday. Yesterday, when another child was crying at school, Charlie got anxious, said “I need break,” and quickly calmed. Today he asked for breaks on and off during his ABA session and for the past few days Charlie has been a peaceful easy feeling boy if there ever was one (and with lots of language: “Back California! Can I have peas? Can I have bread? G’oves!”).

Asking for a break, I have been thinking, is a multi-step process. I am suspecting that it is not just that Charlie feels anxious on hearing screaming or crying and asks to go somewhere else. I think that, when he was younger, Charlie may well have understood that he was to ask for a break when he heard the noise, but by then he was already upset. Gradually, slowly, he has been learning to understand that something is going to make him feel bad—-to predict that he will get upset, and to ask to leave before anything else happens. There is not some magic pilll, some new therapy, some change in the heavens that has occurred for Charlie to have what I will rather grandly call an epistemological breakthrough—-some new understanding.

I think it is happening in part for a very simple reason. Charlie is getting older, Charlie is growing up, Charlie is maturing—with age, does not some wisdom come, “even” for my “developmentally delayed” son with autism?

Not even; of course.

When Charlie was two, when Charlie was in preschool, I feared for the future. What will it be like for him to be my height if he cannot read? If he cannot be in a regular classroom? When I can no longer lift him, his full weight propped upon my left arm, to safety? When Jim teaches him to shave the fuzz we can already see growing on his upper lip?

And while I’m not saying I don’t worry about tomorrow, or about strings of many tomorrows when Charlie is all grown up, I can say tonight that Charlie has figured something out on his own—“I need break!”—and that, if I have less of a muscle in my upper left arm, this is a good thing indeed. I have been carrying Charlie for a long time and it seems that I am just as much in need of the break he has given to me.

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Comments
6 Responses to “I need break! (#582)”
  1. kyra says:

    wow, kristina, just wow! that is huge. i am so proud of charlie. and so excited for the progress in speech, in his words, in his ability to communicate!

  2. Lisa/Jedi says:

    Definitely, the ability to ask for a break does not depend on language. Brendan has been hyper-verbal since he was 17 months old, but he’s still learning when & how to ask for a break. Part of the job is for him to recognise the signs within himself & then catch himself before he’s beyond asking (or beyond) help :). The other part is the words- finding them, using them. This is one of the main things his OT is working on with Brendan these days at school, & we are following-up with it at home. Figuring out when you are at the breaking point is pretty sophisticated, I think. I’m not always successful, & I’m a “grown up”…! It really is cool how much I learn about life from my kid 🙂

  3. Sarah says:

    This is awesome. This is one thing I really want for Sandis, for him to learn to ask for a break before he gets upset. And another thing for me, I spent so long not listening when he WOULD tell me he needed a break, I need to relearn that when Sandis needs a break I need to take it seriously and TAKE THAT BREAK. Thanks for sharing this, very good stuff!

  4. Liz says:

    Hi my name is Liz, I want to thank you for taking the time to read this e-mail.
    I’m a Mom of 2 wonderful boys. I want to share my story with you. First of all I have a 2 yr old son who is diagnosed with autism at 18 months. I did not want to accept this as an answer. So I spent hours on-line doing research and studying everything. I started right away doing everything I could do to help my son. I tried the clay baths, I took him to a homeopathic doctor, saw a neurologist which he requested a MRI, EEG, 24 hour EEG, & BLOODWORK. My son has gone through so much. All the test results came back normal. So we thought maybe he couldn’t hear because he never listens to us. Well I got tubes put into his ears, and that still didn’t work. I have a special Love for him, and the hardest part is not being to do anything for him but to love him. Until I started him in the program with Early Intervention. Where I have to give him Joint compressions and Vibrations, also a brushing technique. I noticed improvement right away. Also the best activities are swinging and playground play. Did you know that if you caught this in time before the age of 3 you can change them almost completely and they will have a chance to live and lead a normal life? So I decided what can I do? I came up with a wonderful plan to help all children with all different types of sensory processing disorder. I have a business plan, and I can’t get any investors because they don’t understand this. Do you know there’s 1 in every 166 children with autism? I want to help all parents and children get through this. But, I don’t have the finances alone to do this. So I prayed to God and asked for help. Please give me the knowledge I need to help my son and others? And I woke up this morning with this idea. I feel this is my only hope. I figured if I sent this around our nation, and how generous we all are to help others this might actually work.
    If you could sent $1.00 dollar to the address below and pass this e-mail to everyone you know. This could get around pretty fast. And If not I ask for a Prayer for my son and other families that are suffering. And I will Pray for you too. If anything the prayers alone will help us. Thank you again for taking the time to read this.
    God Bless you,
    love you, Liz
    Please send to:
    42211 Garfield rd #105
    Clinton Township Mi. 48038-1648

  5. mcewen says:

    The ‘I need a break’ written on cardboard as well as trying to ‘sign it’ was low 5 months, but it was low for other reasons not just this one emerging tool or coping mechanism.
    cheers

  6. Charlie really has been my best teacher! What I’ve learned from him (including where my “breaking point” is) would feel an encyclopedia.

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