Home > Tangles > Catching up about Tangles

Catching up about Tangles

I’ve learned so much since my first day with the 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability. But I want to take things in order, here, as much as possible.

***

The first time I met her, Tangles met me at the door with an excited shriek (she vocalizes a lot– often with loud whoops and yells) and arms out.

“Hi!” I said to her, introduced myself, and because I was unsure what the extended arms meant, I asked “Do you want a hug?” and opened my own arms for her to walk into if she wanted. Instead she grasped my hands and brought them together. OK, at least this was familiar ground for me– clapping games. Fishy loves those too. I let her clap my hands together, clapped her hands between my own, and clapped hand-to-hand in single and double “hi-fives.” I tried a few more complex patterns like Pat-a-Cake, which seemed beyond her grasp. I now suspect I simply did them too fast for her. Her mother showed me a specialty fist-bump that is her very favorite (I later introduced a variation on it that she enjoyed, so now she and I have our own version).

I noted that she was comfortable with casual physical contact, and later noted that she may have decreased skin sensitivity, like Fishy does– she doesn’t seem ticklish and enjoys touching rough textures. Her mother told me that she has pica (the desire to eat non-food items), but although I regularly see her chewing anything and everything she finds on the floor, I’ve rarely seen her attempt to swallow something that isn’t edible. I made a mental note to find chewable toys for her (every barbie doll in the house is missing bits and has its hands and feet chewed down to flat stumps).

She’s also a big fan of eating, and frequently wanders into the kitchen in search of easy-to-grab food. The first time I fed her, I followed her mother’s advice of forking up bites and placing them into her mouth. She was cooperative, but if I went too slowly, she’d grab a fistful of food off the plate instead. The second time, I guided her hand-over-hand to use the fork herself, which I think worked a little better. As with many things, I think tidy self-feeding is a skill she can learn if given sufficient practice. Her hands are quite shaky, though– I suspect she may prefer finger-foods whenever possible. Some days I do too.

***

The first time I visited the girls, their mother was there the entire time. We talked a lot about what I would need to do and went over all the standard basics– meds, allergies, emergency contact numbers, where things were kept, etc..

Both girls kept interrupting this discussion wanting me to play with them. I sat next to Tangles on the couch and periodically clapped with her, while also looking up regularly at Curls’ insistence that I watch her perform some gymnastic trick or other.

I tried to remember to include Tangles in the conversation wherever possible – regularly saying things to her instead of just about her.

When I asked about how Tangles communicates, her mother told me that she doesn’t yet. “Behavior counts as communication,” I said, “She may not use language, but how does she let you know when she needs or wants something, or if she’s upset?” Her mother gave a little more thought to the answer this time, but told me that Tangles doesn’t do those things very often. The few she could give me were:

– head-banging (against the floor, furniture, walls, or people) when upset.

– going to the fridge to get food for herself (which her mother said she does more frequently than she should, and her food intake should be limited to normal meals and snacks. She appears to be towards the upper end of a healthy weight range, and I suspect that she’s starting to get those teen-hormone food cravings.)

– starting recently, tugging on her diaper when it needs changing (a good sign of increased awareness of her own body — maybe she’s ready to start toilet training? I have yet to see her do this, though)

I discovered another. A little later, lost in conversation with the mom, I jumped when Tangles unexpectedly smacked my shoulder from behind with an open hand.

“Oh, I’m so sorry! She hits sometimes!” her mom told me. I reassured her– and Tangles– that it was perfectly OK.

“You just startled me, kiddo,” I said. And I turned to her and offered her my hands to clap with. Because I knew– she wasn’t hitting me. She was trying to touch me to get my attention. And she just didn’t know yet how to do it gently. I hope she learns this soon, because she’s big and strong enough that it does hurt to be smacked by her, and I’d hate to see other people misunderstand and restrain or punish her for her attempts to communicate.

Since then, her mom and I have talked about this a fair bit. To my surprise, the hitting– an open-hand smack, usually on someone’s chest or back– is a relatively recent thing that Tangles does both to get attention and to express displeasure. I had expected that it was a hold-over from a younger age where it was less problematic because she wasn’t strong enough to hurt anyone. The fact that it’s a recent development is highly encouraging for two reasons.

First, it shows a recent increase in her intent to communicate, which is very exciting. The fact that she wants to get people to pay attention to her needs and preferences and has figured out a way to get these things noticed is a very good thing. Now it’s just a matter of providing her with a more preferable way to do so– which, sadly, is not something I know how to implement. I’d especially like to see her acquire an unmistakeable way to say “no” or “stop.”

Second, the fact that hitting people isn’t a long-standing habit means it will be easier for her to adapt to doing something else instead. If she had a long history of getting the result she wanted from this action, she might be understandably reluctant to give it up. Now we just have to find something that’s approximately as easy for her to do and makes sense to her. I don’t think she means to strike me as hard as she does, but her mother told me that one aspect of ataxic cerebral palsy is the inability to control a motion once she has initiated it. I’m still, for the time being, trying to simply modify the hitting to a more gentle touch, guiding her hand to tap my shoulder lightly, but I really do want to talk to an expert about how to help her turn this into more formal communication.

***

I played with the girls while their mother got ready to go out for the evening. By the time the mom left, it was almost bedtime for the girls, so all I really had to do was brush their teeth and get them into bed.

They nodded off quickly, and I was left thinking this would be easy, that I had it all figured out. The girls both seemed to like me– what more did I need? I was in for some serious surprises.

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