Monday, May 4, 2009

Feeding Evaluation

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.


Molly C said...

It irks me when people use that sort of language too. Today on my final exam one of the questions referenced "autistic children and healthy children" and I crossed that out and wrote "children with autism and neurotypical children"

sheree said...

I am really excited for you and Finn about the feeding evaluation...that is GREAT that he is doing well.

What you mentioned about the sign language thing has me thinking now. I can see where you're coming from and it's definitely something to think about. I think for me specifically, I just think it may take Gabby a little longer to develop her speech (just as it takes her a little longer to develop other milestones) so why not have some sort of tool so that we can conversate in the meantime?

I haven't really done my research on the negative aspects of baby sign language and haven't really thought to do that. Just wanted you to know your post was thought provoking ;)

Jen said...

Awesome news about the feeding eval. Hope things continue to go well.

As for sign language, we did some with Evan but it wasn't something we really worked hard at. His speech therapist used it with him too, but only in conjunction with him making some sort of sound at the same time. She wouldn't accept just a sign; it was always a sign along with some verbalization. The sign language was used more as a bridge until he was able to speak more words out loud. Now, he will occasionally use a sign, but it's always when he's chattering away, so it seems like it was a pretty effective system.

Tricia said...

Great about the feeding! Good to have a positive experience. About the sign. We're like Jen, we use sign, but we don't push it too far. It helps in some cases, but often we are just looking for Georgia to reiterate what we already know she wants (because of context/charades). I dunno. We're not the most shining example of talking though, that's for sure.

Alisa said...

Adorable pics of Finn and Lilah at the therapy center. It's great that he's doing so well and that she wrote the referral.

With Lena, who is now 6, we used sign, but always spoke the words, too. She rarely signs any more, and is a big talker. I always thought of it as two distinct things: speech (which has a huge oral-motor component, an area where she was a little weaker) and communication. Signing helped so much because she was able to communicate with us even when her ability to say the words wasn't yet there. I never wanted her to get frustrated and stop trying to communicate, and her ability to communicate was way ahead of her ability to speak, so signing was very helpful in that regard.

Keri said...

Another aspect of signing that you didn't mention is that it requires fine motor skills with the hands (and face). It might be good to teach Finn some sign for that reason alone...

Wendy P said...

Lisa - awesome news about the feeding and the future support!

I think with sign, it's not about instead of, it's about giving the ability to communicate before the mouth muscles are able to do their job. Sort of, the brain is willing but the mouth is weak. With both of my children, as the spoken words showed up, the signs dropped away.

Kira has a developmentally appropriate vocabulary BECAUSE she is able to use the sign language. If we were relying on sound alone, she wouldn't be able to produce 1/2 of the words that she can effectively communicate with sign. She doesn't seem to use sign as a crutch - we always use it in conjunction with the spoken word. I try to have her repeat the word every time she uses a sign.

It also helps me to figure out what she's saying when she speaks along with a sign. AND she's able to pull from her signs when she needs a word for a new object. For example, she wanted a balloon - a word that we haven't signed and have rarely spoken. She didn't have a word, so she signed "flower" and pointed to the bright red ballon. I think that showed awesome cognitive ability - problem solving, and all that. Without sign, she wouldn't have been able to communicate that to me at that point.

Obviously, we're big fans of signing. But, if it's not working for y'all - that's totally fine. Whatever works for your child, your family, is the right thing to do.

Razzle Dazzle Mom said...

Such cute pics.

I don't know how helpful my .02 cents is, but we taught our second sign (neurotypical son), but always used speaking with it. As soon as he could speak, the signs disappeared, but it sure was helpful in the meantime.

Hector and Jennifer Varanini Sanchez said...

Ditto on the signing....I'm doing exactly what I did with my other two boys. I use basic signs when they are infants to help reduce temper tantrums ,etc. It's the simple ones....hi/bye, more, eat, milk, all done, please, thank you. It's effective, adorable and just something fun to do with the kids before speech develops. Joaquin is signing and it's just as fun for him as it is for us to watch and cheer about. He is so pleased with himself when he signs more and bye bye.

By the way, the program we are doing with the Institutes wants us to use a choice board but I've been hesitant to use that for some reason. They like it because it gives the child a choice but I just don't see it fitting in with our lifestyle and really don't want that to be a crutch for speech development.

Mel said...

Great news about the feeding :) You have done so well. I am using some sign with Luke too, and like you have the expectation that he will speak. He has quite a few words already, but just started signing 'finished' when he has had enough, and there is no way he could say that yet. So the two go together really well. You don't have to sign full sentences, just the key words to facilitate communication and the speech will follow.

Lisa said...

I'm so glad you had a good experience! All of the feedback on Finn is awesome. Even with some pretty serious detective work, it would have been hard for you alone to determine all of that :)!

The muscle tone, lip closure and tongue movement are all so important in effective eating and speech.

We began using signs with Bridget when she was about 9 months old. I knew her speech might be delayed, but also felt strongly that it was still important to do the same things (that we've done with all the other kids) to encourage speech. I wish I would have signed with all my kids. As everyone else has noted, it is so helpful as a bridge to verbal communication. We, too, always use signs in conjunction with spoken words.

Even just using "key words", signing has helped us understand how much Bridget is processing that she is not yet able to verbalize. It has given her an opportunity to let us (and others) know that she's keyed in and aware.

When she was about ten months old, we were in an elevator and the woman next to us leaned over and said (to me about Bridget), "Oh, she's so cute!" Bridget didn't miss a beat. She turned to the woman and signed "thank you". I stepped out of the elevator shaking my head.

Right now, Bridget is showing an interest in potty training. She can't verbally express that she needs to go, but she can sign "bathroom" and "potty chair" she can definitely still let us know.

Tara said...

I've thought that about signing, too. Right now, though, we're are initiating speech therapy for our typical 2yo. and I so wish that we would've started signing with him. He gets so frustrated with us because, in his mind, he is saying entire sentences, but we can only hear inflections.

We've used it with a few of the other kids, but just didn't with him for some reason and now I regret it. I, too, think that signing will be important for Eon to show others how smart he is and and how much he "gets" before he can verbally tell them himself.

heather said...

I love sign and KNOW it absolutely helped Morgan in her speech. I feel like that argument is the same as saying, "I am not going to teach my baby to wave bye-bye because I just want him to say the word and not use any hand signals first." Does that make sense?

SunflowerMom said...

I'm glad the eval went well and you will be get services for him! Great to tackle this early!

I think it is wonderful that Michael is ASL fluent. I see no reason not to sign if the famil is already familiar with it and has seen it's successful use.

leah said...

A similar debate rages among parents who have kids with hearing loss (with sign language)! We do use some with our little guy (neurotypical- doesn't hear so well), and use a "sandwich" approach. We speak the word, sign the word, then say the word again. This way he gets the verbal reinforcement, but is also exposed to the sign. It's been working so far!

doulamom said...

you can do both languages at once. I learned french and english at the same time. It all works out. I found the signs to be WONDERFUL - wish I'd done more with Abbey. It really cuts down on the frustrations/tantrums too from what I've heard esp. with the later talkers/boys etc.. I've only had the two motor mouth girls so what do i know :)