Sunday, March 22, 2009

More reflections on the "radar" of parent of children w/ developmental delays

"Out of rational fear, many of us tell the child (usually nonverbally) I WILL TAKE CARE OF YOU NO MATTER WHAT. And it can be just that unnecessary 'taking care' that keeps the child in a learned helplessness, or as I prefer, a LAZY mode of operating."

"Think of your job now as catching yourself when you are about to do for your child when he needs to do for himself... "

--Dr. James D. MacDonald from Communicating Partners

We spent over three years working with our daughter from a strict behavioral perspective, demanding behavioral compliance from her, and teaching her many words and concepts. After all of that heavy-hitting early intervention, I still needed to use my radar for things that I shouldn't have. None of that early intervention translated to success in an age-appropriate kindergarten classroom or at Sunday School or birthday parties or grocery shopping.

We completely MISSED non-verbal, pre-speech foundations of communication with this behavioral approach. We missed the things infants and babies experience, like reciprocity, emotion sharing, referencing faces for meaning. Interaction begins NON-verbally, and through all of our early intervention efforts, we missed that.

A switch to a developmental approach was quite a shift for us, for me.

Almost five years ago, we chose RDI(r). RDI(r) was the only developmental program out there for a child my age, I THOUGHT. (I was so wrong! Now, I know that there are others. Communicating Partners is one. Floortime is for younger children, and Son Rise, Gentle Teaching, and Feuerstein Instrumental Enrichment all come from that developmental perspective.)

Overdeveloped "Mommy Radar" is necessary, but left unchecked, can create learned helplessness and passivity, a "lazy mode of operating" in a child. One of the things that Dr Gutstein from RDI(r) helped me recognize when we began is the fact that many children with delays in communication and interaction are very passive. He taught me that my daughter needs to physically feel herself taking an action, reaching, stretching, gathering her own information. NON-verbally. WITH me. Combining active participation and interdependence.

Here's an example: Before I began learning about a developmental approach, I would dress my daughter without her help. I could put a coat on a limp child in no time, sliding her coat sleeves up her arms, zipping the coat in a flash. I'd be working with her on some behavioral program while I was dressing her, asking her to show me an action or touch a body part. At meal time, I'd place her food in front of her while working on another verbal, stimulus/response-type q & a from our behavioral program.

I gave her the experience, "Getting ready means Mom dresses me. I don't have to do anything. It's all her job. I don't even need to pay attention to events happening around me. Mom will prompt me for anything I need to know, including when it's time to leave, time to eat. Instead, Mommy and other adults will ask me lots of questions and I have to give the right answer."

Dr. MacDonald from Communicating Partners and Play to Talk delivers a similar message using a different word picture. I love Dr. MacDonald's phrase about putting a child in a lazy mode of operating -- that's an accurate description of what we did, accidentally, while we were working on other skills in early intervention, with hearts of gold and good intentions. I've always thought of it as mindlessness (because RDI(r) reminds parents to be "mindful"). I do like that word picture: putting a child in a lazy mode of operating when we do not allow the child to do the things he can do for himself.

We also gave her the really bizarre experience that communication is about our asking her questions and her responding with the one correct answer. (Can you imagine the anxiety you'd have if the only communication you were only allowed is to answer questions with one right answer?)

So, not only was she not feeling herself taking an action, but she was also experiencing communication very differently from the rest of us.

I listened to Dr Gutstein's words (she needs to feel herself taking an action with me) and wondered how I'd begin to create opportunities for active participation with a child who was not interested? The only way I could interact with her was to engage in one of the stimulus/reward situations that we'd both memorized and practiced over and over. If I didn't prompt her verbally in some way, she simply ignored me, shut me out.

After I made the switch away from a behavioral approach, I began using myself differently. Silently, I'd hold her coat open, wait for her to take her own action and notice, and then I'd wait for her to insert her own arm into a sleeve, and wait for her to insert her other arm. I might start the zipper, get it on track, and wait for her to notice that it wasn't zipped all the way, and allow her time to notice and zip it. Slowing down and being quiet were required of me to make these opportunities happen.

And at snack time, I learned to hold a gfcf cookie or banana toward her and wait for her to notice, and reach her own arm out and accept it, and to avoid the temptation to use it as a reward in order to get her to touch her nose or name the fruit or some other verbal, behavioral task. Accepting a treat as a reward for responding to a stimulus had not given her the sense of being an active participant. I had to learn and recognize that non-verbal reciprocity, these silent interactions, were necessary foundations of communication that we had missed and needed to go back and get. (I changed my focus to non-verbal precursors and foundations to communication, giving her experience as --to borrow from Dr MacDonald-- a "communicating partner", and shift from a focus on "verbal behavior".) I needed to recognize ways in which I had been doing both parts of the interaction, hers and mine, and begin to give her responsibility for her part and the time she needed to accomplish it.

I began to learn, as Dr MacDonald says "to catch myself when I am about to do for my child when she needs to do for herself." And that involves allowing her to reach for herself, shift her own head, eyes, attention (without my prompting), which means I must slow down in order to give her the processing time and space she needs to become active with me, not passive or "lazy".

For children with delays in communication, those "catch yourself" times include times when the child needs to shift his own gaze and his own attention, insert his own arm into his own coat, or his foot into his sock and shoe, accept his own plate, fork, spoon, cup as you are setting the table, carry his side of a bag of groceries with us, and more.

And, the more I think about it, the more I look at how I am with all of my children. It's not just about kids w/ developmental delays! I think I need to cross stitch Dr. MacDonald's words or print them onto a poster for my wall, because I still recognize that I "do" for all of my children when they need to be "doing" for themselves. And they hate it when I make a new discovery and begin to hand over to them the responsibility that should be theirs. I realized in the last few weeks that I have one child who ASKS me for reminders. That child's experience is, "I don't have to remember because Mom will remember for me."

We are all works in progress, some of us (me) have more work than others. The more I learn about myself, the more work I seem to have to do. :)


Anonymous said...

Hi Penny, thanks so much for that great advice! You have given me lots to think about. My son Christopher has Down Syndrome not autism but exactly the same is true. He needs to do things himself.
Best wishes from a fellow communicating partner!

Jenny said...

This is great advice for any mom...we have a tendency to try and get things done quick instead of gently helping our children progress or be invovled in what we do and how to help them become more independent. I like your suggestions and examples of how you changed from you ABA approach to engaging your daughter nonverbally, enabling her to become empowered!

Thanks for the reminders...I really needed this :)


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