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Feeding Evaluation

Posted May 06 2009 1:33pm
This morning was Finn's feeding eval per the referral from our pediatrician. I wasn't sure what to expect when we got there, as far as what kind of facility it was (I guess I pictured a doctor's office), but it turned out to be a whole therapy center, with all kinds of toys and equipment. There were a couple other kids there receiving PT (they didn't appear to have Ds), and I swear, the whole environment kinda made me wish we were doing some sort of center-based therapy.

Anyway, the woman who saw us is a PT who specializes in feeding, and she said she's been doing this for 40 years (I didn't know they even had these therapies that long ago). She was very nice; she did use the dreaded "Down's babies" and " normal babies" terms, but I cut her a break because I figured she's old school and is probably set in her ways.

She took a whole history of Finn's feeding from birth and then put him in this little seat and got started.

First she used this nubby thing to stimulate his lips and the inside of his mouth to evaluate his response to oral stimulation. She said over and over that he has good muscle tone, good lip closure, he moves his tongue properly when it's stimulated, and he doesn't have tongue protrusion.

I should say also that just over the weekend, we seem to have turned some kind of corner with feeding, because the last couple of days, he's shown a willingness to be spoon fed that he absolutely wasn't showing before.

So after the intial oral stimulation and eval, she got to work with some jarred food I brought along, and he did great. He ate almost an entire jar - willingly! - which is more than I've been able to get him to eat so far, even with his new-found willingness to let me spoon-feed him. She noted that he does not have any problems with swallowing or moving the food to the back of his mouth with his tongue. She said that it took him a couple minutes in the beginning to "get organized," but that once he did, he did great. She showed me how to support his chin/lower jaw and said that it looks like it's just a matter of his learning how to eat, and persistence on my part.

Lilah was such a good girl through the whole session; I'm sure it helped that there were plenty of toys for her to play with.

Anyway, the therapist wants us to come back in three weeks for a follow-up, and she's going to send a written recommendation to our service coordinator at Regional Center that Finn receive OT/feeding therapy twice a month. She said that with her written recommendation, she expects that we won't be denied this time - woo hoo! She said that even though he did really well today and she expects that he will continue to do well, continued support and therapy will definitely benefit him, especially as he transitions to more solid types of food and cup-drinking.
I'm very, very glad we went today!
Michael started his second round of chemo this morning, and after the feeding eval, we headed over to the doctor's office to see him for a few minutes since we were in the area. I had mentioned a while back that M found out that one of the nurses at his oncologist's office has a little boy with Ds. Well, I got to meet her today, which was really great. This is the first time since Finn was born that I've had the opportunity to talk to another parent of a child with Ds in person, face to face.
She told me about her son, about some of the medical challenges he's faced, and how well he's doing now (he's 8 I think). She mentioned that he reads and talks. I asked her if they did sign language with him and she said no, they did not, that they didn't want him to have that "crutch," that they wanted him to use spoken language from the get-go, so they expected him to speak with words and pushed him to, and he does.
I have to say that this is an area I've been experiencing some turmoil over. I know that teaching some basic signs is what most every parent with a child with Ds is doing these days. Using sign language as a beginning form of communication seems to have gained popularity over the last few years even with parents of "typical" kids. I never did it with my other babies because I just wanted and expected them to learn how to use spoken language, and I'm not sure why I should treat Finn differently. I mean, I know he has Ds, so I don't think this is a denial mechanism on my part. I just wonder: if he's got the muscle tone, and he's got the "good oral-motor organization" like the therapist today said, then why can't I just go in with the expectation that he'll learn to speak? There's the cognitive piece, I know. But if he has the cognitive ability to learn sign language, why wouldn't he have the cognitive ability to learn spoken language as his first form of communication? It's ironic, too, since we have a whole lexicon of sign language at our fingertips because Michael worked as a sign language interpreter in the deaf community for years and is completely fluent in ASL.
Anyway, I'm not criticizing parents who use sign language. I guess I'm just trying to work through this in my own head and figure out which direction to take.
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