Desensitization Brushing , Toe-walking Braces (AFO's) and Speech

April 27, 2006

WOW! the new imdsa site looks great!

I wanted to take the time to tout the praises of desensitization

brushing as prescribed by our occupational therapist. We have been

doing this for our son for a little more than two weeks and it has

made an enormous impact on his sensory hypersensitivity. AMAZING!

If you want more information, I will be glad to get it to you or if

your child is in OT, ask about it!

I am having the hardest time trying to get a referral for an

orthopedist to assess whether or not my son needs braces for his toe-

walking. The physical therapist (PT) calls them AFO's. I've been

squawking about this for several weeks, especially since our son fell

and got a mild concussion because he was toe-walking in the classroom

and slipped on a toy. Anyone have suggestions on how to get your PT

or OT or pediatrician to refer you? And once referred, what is the

process for fitting and what does the orthopedist use as parameters

to assess the child's need for braces?

O.K. now just time to rant. I am getting the run-around regarding my

son's speech therapy over the summer. GRR! The county has an

assessment for summer speech and they say he doesn't qualify but

privatized speech will require one more referral, evaluation and

etc. For just 10 weeks over the summer?! UGH! He'll be in speech

through the county again as soon as kindergarten starts. I just

don't want him to regress over the summer.

Can anyone recommend some speech books I can purchase? I'm thinking

of avoiding the whole hassle and doing his speech therapy myself.

Lastly, we are just about through with all of his testing. He had an

EEG and his chromosomal assay and thyroid tests on Monday and he will

be finishing IQ testing next Saturday. The neurologist's office is

doing a TCD (does anyone know what that acronym stands for) next

Thursday and then our diagnosis is the ninth of May. PHEW! It's

been a whirlwind of appointments, tests, evaluations and such the

last six weeks. We are hoping for a definitive diagnosis and not

an " I'm not sure, he needs more tests " answer. But, judging by all

the tests thus far, I'll be surprised if he comes back negative for

MDS.

On a curious note, those questionnaires that the neuropsychologist

has you fill out regarding sensory senstivity are a trip! Who knew

that my son's proclivity to make a " nest " out of his comforter and

sleep in that little cocoon was a tactile senstivity issue? I was

laughing through the whole questionnaire because it was very clearly

pinpointing his sensory issues. What a hoot!

Thanks for listening!

Jennie

mom of Jessie (6), (5-MDS), Maren (22 mos)

April 28, 2006

Jennie -

I recommend Communicating Partners by Dr. Jim Mac - his premise is

very simple but the follow through is tough. If I am doing CP with

then I feel like I am neglecting and if I am doing homework with

then I feel like I am ignoring . But his methods are very common

sense and simple - you just have to do it. I have been doing this with

for 6 months and she is talking more - still not where a 7 year old

should be - but more is good.

Darlene - Mom to (9) and (7)

>

> WOW! the new imdsa site looks great!

>

> I wanted to take the time to tout the praises of desensitization

> brushing as prescribed by our occupational therapist. We have been

> doing this for our son for a little more than two weeks and it has

> made an enormous impact on his sensory hypersensitivity. AMAZING!

> If you want more information, I will be glad to get it to you or if

> your child is in OT, ask about it!

>

> I am having the hardest time trying to get a referral for an

> orthopedist to assess whether or not my son needs braces for his toe-

> walking. The physical therapist (PT) calls them AFO's. I've been

> squawking about this for several weeks, especially since our son fell

> and got a mild concussion because he was toe-walking in the classroom

> and slipped on a toy. Anyone have suggestions on how to get your PT

> or OT or pediatrician to refer you? And once referred, what is the

> process for fitting and what does the orthopedist use as parameters

> to assess the child's need for braces?

>

> O.K. now just time to rant. I am getting the run-around regarding my

> son's speech therapy over the summer. GRR! The county has an

> assessment for summer speech and they say he doesn't qualify but

> privatized speech will require one more referral, evaluation and

> etc. For just 10 weeks over the summer?! UGH! He'll be in speech

> through the county again as soon as kindergarten starts. I just

> don't want him to regress over the summer.

>

> Can anyone recommend some speech books I can purchase? I'm thinking

> of avoiding the whole hassle and doing his speech therapy myself.

>

> Lastly, we are just about through with all of his testing. He had an

> EEG and his chromosomal assay and thyroid tests on Monday and he will

> be finishing IQ testing next Saturday. The neurologist's office is

> doing a TCD (does anyone know what that acronym stands for) next

> Thursday and then our diagnosis is the ninth of May. PHEW! It's

> been a whirlwind of appointments, tests, evaluations and such the

> last six weeks. We are hoping for a definitive diagnosis and not

> an " I'm not sure, he needs more tests " answer. But, judging by all

> the tests thus far, I'll be surprised if he comes back negative for

> MDS.

>

> On a curious note, those questionnaires that the neuropsychologist

> has you fill out regarding sensory senstivity are a trip! Who knew

> that my son's proclivity to make a " nest " out of his comforter and

> sleep in that little cocoon was a tactile senstivity issue? I was

> laughing through the whole questionnaire because it was very clearly

> pinpointing his sensory issues. What a hoot!

>

> Thanks for listening!

> Jennie

> mom of Jessie (6), (5-MDS), Maren (22 mos)

>

> Become a member of IMDSA today at http://www.imdsa.com

> *******************************************************

> Contact IMDSA Today at:

> IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK

> *********************************************************************

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> *********************************************************

>

April 28, 2006

I totally agree with Darlene on Communicating Partners. I used a similar method

with Tim when he was 2 1/2 and he started with 25 words that only I could

understand and in 9 months he had an unlimited vocabulary that most people could

understand and he was putting 3 and 4 words together for sentences! This, of

course, was used together with sign language which I highly recommend!

There really wasn't much to it. It was just a new way of " play " and making

sure you actually communicate with your child.

Kristy

Darlene Benoit wrote: