Monday, April 17, 2006

Learning when to say "when"

I'm finding that making judgments about the interventions we use with Bud can be sort of like going out to eat at a fantastic restaurant: the first bite is so good and so satisfying that my brain makes the leap that if some of this is good, then more of it will be better. I dive in and begin to devour what's in front of me, and before I know it I discover that I am so full it hurts and that, in retrospect, more good has turned out to be not-so-good.

I suppose that in the midst of these feeding frenzies my body tries to send cues to my brain ("For the love of God, stop eating!"), but I am so swept up in the moment that I don't (or I choose not to) interpret the cues correctly.

I'm afraid I've done the same thing with Bud's "therapies."

Last year, Bud saw a massage therapist who did Cranio-Sacral Therapy. At first, he loved the sessions. They relaxed him, and he looked forward to them. As time passed, he began to have mixed reactions to the therapy. He had one session that was particularly intense; he was more fully engaged and "into" it than he had ever been, and because of that it was the longest session he'd ever had. Following that session, Bud did a complete turn-around. He didn't want the therapist to touch him the next week. Or the week after that. Or the week after that. I don't know if that last session was too intense, if it kicked up emotion, or if it was unsettling to him, and he didn't have the language to talk about his reaction. Each week he said he wanted to go, but then when we got to the office he'd say he wanted to leave. It took me several weeks of making attempts, giving him encouragement, and asking him for words and explanations to realize that he was telling me what he needed, but I wasn't listening.

He needed to be done.

We've just had a similar experience with Bud's occupational therapy sessions, but this time it took me even longer to get it. Bud's been having one-on-one OT sessions for more than a year, and for a long time he really enjoyed them. They helped with some of his sensory integration difficulties and helped improve his fine motor skills. But in recent months, Bud has been having out-of-character reactions to his OT. He has been bossy, belligerent, defiant, stubborn, rude - in other words, none of the things that we know him to be. I spoke to his OT about it ("We never see this from him..."), but of course this was all she was seeing of him, so perhaps I sounded like a mom in denial. I chalked it up to a developmental phase, to him testing boundaries, and I convinced myself that it would pass. OT has always been good for him, I reasoned, and so of course it will continue to get better. More is better, more is better, more is better.

I'm usually at work when Bud has his OT sessions, but two weeks ago I was running late and the OT was running early and I was home to hear the session from downstairs. Bud, who had spent the morning happy and cheerful and easy-going, changed in an instant and began engaging in battle. The OT stood her ground, and the situation escalated. I stood at the bottom of the stairs with indecision rooting me to the spot.

Should I intervene? Does he need me? Will I be undermining the work that she's doing?

I started up the stairs slowly, then broke into a run as I heard Bud start to cry. I dropped down next to him on the floor and he buried his face in me and sobbed. I rocked him and whispered to him. The OT was frustrated, probably with me. I could feel her tension and aggravation as she spoke to Bud and asked if he was angry. I'm sure that he could feel it, too.

She told me that she had some information for me about mercury.

I told her I had a lot of information about mercury.

She said it was brand new research.

Bud sobbed some more, and we rocked together.

He needed to be done.

So we're taking a break from OT. Maybe a short break, maybe a permanent break. I'm upset with myself for not reading Bud's cues better and earlier, for making him continue when he was clearly ready to stop, for pushing for more, more, more instead of walking away at "just enough."

It's hard to know how much is "just enough." It's hard to walk away from a once-good thing when there is still more available. But I need to learn to recognize the signs that good has gone past better and is cycling back toward bad.

I need to learn when to say "when," and then walk away from the table with the satisfaction of moderation and good judgment instead of the pain of over-indulgence. Because let's face it: when I over-indulge, it's really Bud who feels the pain.


Kristina Chew said...

OT has been both stimulating and overly stimulating for Charlie---it seems to be best when it focuses on particular goals or skills (working on fine-motor for writing) and to have more limited returns when it's done for more "purely" sensory reasons. (As with a former OT who filled Charlie's sessions with the color orange, Native American pipes and drum music, orange scent---apparently he was having regular accidents, I suspect to get himself out of an overly-over environment.)

It does seem to me true that part of our job description as autism parents is to hear when our kids say "when" and "enough." And to be in a constant (and exhaustive) state of assessing their needs, and of self-assessing our views of them. Our kids really do grow and change.

Your post also makes me think about how I used to have a big sweet tooth that, after pregnancy and Charlie, evaporated. Occasionally I'll eat some dessert thinking it looks so good and then remember---no more--I take another bite---put down the fork and feel relieved. --- I've seen Charlie struggle through figuring out he no longer had a "taste" for "treats" that used to please him, like Barney videos; he likes a bit here and there, and then has learned to walk away.

And say "all done!".

Estee Klar said...

Sometimes it's the person teaching the child. Sometimes our kids just have enough -- but you already know the alchemy of KNOWING, of instinct, and I'm sure yours is right on.

And what's with that mercury comment?

Wendy said...

I have found that C really feeds off of other people's moods. If his ABA therapist(s) comes over in a grouchy mood, he immediately picks up on it and then becomes grouchy himself. He seems to then remember the next time they come over and the pattern repeats.

C used to get 50 minutes of OT per week but I canceled it. I couldn't figure out what good they were doing. They played with him in much the same way that I do - so why was I paying for it? And both OT's that he's had used to play with the exact same toys/games every time they came over. I think it just got really boring for C.

MOM-NOS said...

Estee, I interpreted the subtext of the mercury comment as "This extreme negative reaction is a direct result of Bud's autism. Autism is a terrible, poisonous thing which may have a cause that is completely outside the realm of the work we are doing here."

Though I didn't pursue the conversation out loud, my internal response was "If Bud has been poisoned by mercury, he was just as poisoned an hour ago when he WASN'T like this. Regardless of what 'caused' his autism, this particular extreme reaction was not the result of mercury."

This internal dialogue is actually what prompted my post "What I Think I Know."

SquareGirl said...

I've told many a parent, (your child) isn't going to need me/us pretty soon (because I know it's goal is to work myslef to being unessecary). Parents are often the most resistant to letting go of the therapy, but I've ssen the signs...they show me that the child is ready to move on to bigger and better things. And I find that whenever I leave soon enough, I am always welcomed back (to an occasional birthday or special celebration) with open arms, rather than a "oh no, what is she doing here?" Sometimes moving forward seems like letting go of something that was good instead of graduating to bigger and better things.

I've also had a couple parents who reported similar experiences to Cranio Sacral.

Linda H said...


I just wanted to present another possibility. There is a book called "Love, Jean" that is a collection of letters from Jean Ayres to her nephew, who has sensory integration dysfunction. In the letters (she lives too far away to treat him herself) she describes the therapies he needs to do and tells him at first the therapies will make him feel much better. She then explains he will hit a point after several months when his improvements will plateau and then make him feel worse. She tells him to be diligent and that he would have to work really hard to continue doing them. Eventually though, he would be able to get past that plateau and reap great benefits. Athletes experience the same thing in conditioning training.

As always use your gut instinct to do what's best for Bud. Don't beat yourself up for not making the perfect decision at every pass. Your doing a great job with Bud!

gretchen said...

Good for you mom. You can have too much of a "good" thing.

I had a similar experience when Henry started school this fall. I decided that a full day of school (including speech therapy, OT and PT) was quite enough for Henry and decided to discontinue the additional speech therapy we had been doing.

I felt that the folks at the speech clinic didn't quite agree with me, and I've had other parents act suprised since, that we aren't doing "as much as we can" for Henry.

But I feel that I know my son, and I know that trying to do an hour of speech after a day of school would have done more harm than good.

Julia said...

I've just been thinking in the past week or so that next year, when my son is doing a full day at school instead of the current half-day, maybe private therapy should be discontinued, or scaled down.

We'll see. This post has made me think that maybe it wouldn't be such a bad idea to give him that break. :)

(And depending on who he's working with for the therapy, that will make a difference -- he's been going to one place for almost 3 years, and there have been different therapists working with him, and some "listen" to him better than others.)

Thanks for being here and sharing.