Thank you for your message, Lois.

[Guest guest]

Thank you for your message, Lois. Wiley's speech therapist uses touch cues

and these are kind of quirky as Wiley imitates the touch cues beautifully on

himself and still says " Ba! " It does inspire the little guy, though. I

have been working much more vigorously with him myself lately, breaking

words down, even words like 'up' and so on, and this seems to be helping him

- he seems to enjoy trying - it's a nice quality he has and that I'm sure

most people's children share, that even when it's hard, he perseveres and

keeps at it.

Wiley has been in feeding therapy for quite some time, once a week and now

once with a feeding therapist and once or twice a week with occupational

therapists, since I guess June of 2000, directly post-nissen fundo and the

diagnosis of reflux and so on - he was 16 pounds at 19 months of age. So he

started at 19 months or so. His OT at the hospital is specialized in

pediatric feeding disorders and his feeding therapist through EIP comes from

a good feeding clinic in Boston. We are in W. Mass. I know Sara 's

site well, have the straw and horn kits, the Garfield and Casper massagers,

and so on. I have a " feeding therapy bag " and work with him every morning.

I've also read up on feeding disorders pretty extensively on-line and

appreciate your links - I'll check them out tonight. Suzanne Evan

(sp?) has a great site on sensory and motor based feeding disorders as well.

There is a sensory piece to Wiley's feeding issues, but it isn't clear how

much of his problem is motor based and how much is sensory based. Our best

guess is that the motor planning is poor. He has mildly reduced oral

muscular tone and hyper/hypo sensitivities according to the feeding team at

Children's Hospital. He was seen by two different developmental pedi's at

Children's, one for a developmental eval and one for a feeding eval, neither

of whom suggested dyspraxia at the time although they supported speech

therapy. The speech eval recommended speech therapy only twice weekly,

although the feeding therapist and speech group have been nice in the way of

reinforcing the individual therapy he receives. I guess I feel he is

somewhat maxed out on therapies and it is up to me to make the therapy

techinques an effective part of his every day life - this last 10 months or

so has been putting everyone in place for him, getting Children's Hospital

Boston involved, and so on. Now it's up to me to follow through. I didn't

know the difference between dyspraxia and apraxia - thank you! As for his

swallow, his last study at Children's showed all consistencies were handled

normally and safely - wee hoo! It's just that Wiley refuses most

consistencies. Like I gave him cut up Macintosh apple, very soft, tonight,

and I had one bowl for taking and one bowl for spitting it out. What's good

is that it is all normal to me now. Almost humorous in that he seems

content with the set-up. P-tooey!

>reply to Betsy Subject: New to group - question

>

>Hi,

>I am new to this group - my name is Betsy.

>

>Betsy,

>

>Welcome to the group, and I thought that perhaps I could give a few of my

>ideas

>for you to see if it helps.

>

>1) Early Intervention -- when early intervention came to our home, it was

>only

>to test our son to see if he was delayed and to what extent and in what

>areas.

>They don't do a diagnosis. Of course, because I was scared to death, I

>tried to

>press them----- in the end I said " if this was your child what would you do

>next? " --- dev ped

>2) You mention the reflux and a feeding tube. My son had pyloric stenosis

>(the

>muscle between stomach and intenstinal tract tightens and doesn't allow

>food to

>pass requiring emergency surgery at 3 weeks old) and then he had reflux

>(though

>mild) after that. (We started oral motor exercises see Sara

>website

>for details when our son was 18 mos old)-- perhaps you are already pursuing

>this, but if not, that might help

>3) If a child is suspected of having APRAXIA, why take the " wait and see "

>speech

>approach. That doesn't make sense to me. For apraxic children, frequency

>of

>speech therapy is very important. Also, I understand that there are many

>techniques to use, but our son has responded best to PROMPT therapy. As

>soon as

>a talented slp prompt certified started with our son, he was able to make

>sounds

>for the first time ever..........Apraxic kids don't respond best to

> " traditional

>therapy ---or done in a group " PROMPT is a tactile method. You can find

>therapists for your area listed on the PROMPT INSTITUTE website. It is

>worth

>checking out!! We went to mediation to get the state therapist trained.

>4) I am not a professional, but by 2.5 a good developmental pediatrician

>should

>be able to make a diagnosis -- can any really qualified people help me out

>here????

>I feel for you because we as parents look for answers in so many places.

>Finally, I decided only listen to a couple of people 1) Dev. Ped. who made

>a

>whole program plan 2) slp very experienced with both oral motor issues and

>prompt method. Otherwise, I do listen to everything and try to use my best

>judgement because I will have to answer to my son one day --

>

>I hope this is of some help -- it sounds like you are doing the most

>possible

>for your little one. good luck

>lois mom to lucas 2.5 apraxia, hypotonia, and fine motor issues