Re: recommendations for therapists and MD in St. Louis area???

March 27, 2011

Hi Paige! A few years ago one of our moderators lived in St. Louis and she

loved her son's therapist there Hoffmann M.A., CCC-SLP, President of the

Missouri Speech Language Hearing Association. wrote the following about

Tricia's son

'Silent No More' a story written by Hoffmann M.A., CCC-SLP, President of

the Missouri Speech Language Hearing Association that anyone that cares for a

child with a speech delay or a speech disorder can relate to.

Message from the President

silent no more

he spoke to me

yet he was utterly silent

mute, soundless, wordless

he was the most quiet child

(a very powerful quiet)

at the same time, he was the most loud child

(a very powerful quiet loud)

screamed silently at the top of his lungs

beseecher of understanding

in the silence

in the unspoken

i unequivocally heard him

we communicated

soon digits were flying

with valuable expressions

my choo-choo..more cookie..and so on

a viable human sponge, he

loud energetic laughs, encouraged

noisy high-pitched squeals, welcomed

comfortable communication..for a while

until, he desired to 'say' so much more

fear and embarrassment enveloped him

words hung from the tips of his lips

releasing would be too difficult (or possibly too easy)

cried for mama with tears and hands

frustrations boiled within

a mini volcano ready to explode

finally, a long-awaited eruption (of a word)

a great relief flowed from all

no longer voiceless in the world

he requested " two " skittles

he, surprised

i, speechless

two smiles

the power of words

the power of silence

both empower the potency of communication

When turned two, he stopped talking. For well over a year, he did not

speak a word. A year ago this month, this amazing kid I write about spoke his

first words..again. He now speaks in lengthy sentences and his speech becomes

more intelligible each day.

A success story. We all have them. Our stories. Some personal, some

professional. Some successful, some not so successful. No regrets. The stories

make us who we are today, as professionals and fellow human beings. We learn

from all of our experiences and interactions with others. Then we continue on

our journeys, growing as individuals, affecting those we meet, improving quality

of life for others and creating more stories.

So what difference did this one client make for me? I can hardly put into words

all that I learned from this now four-year old child and his unstoppable,

inspiring mom. Both and his mom motivated and challenged me. I can

explain it well by looking at the theme of the 2003 MSHA Convention----The Three

C's: CEU's, Collaboration, Compassion. If I did not continue educating myself at

conferences, reading and workshops, I do not believe I could have effectively

helped this child. So, continuing ed is crucial to my growth as an SLP (plus now

it is required! J ). When this child came my way, I knew I would be consulting

with trusted colleagues----- collaboration . It was very important for me to

'run ideas and thoughts' by others..my SLP friends, his speech-language

pathologist in his preschool, an audiologist, student clinicians, a social

worker, and many others. But I think most of all, it required compassion , which

came easily. To feel for fellow human beings, complete strangers. Genuine

compassion not only for the client, but for his family as well. Wow. That's big

when you really think about it.

Go to the MSHA 2003 Convention. It's going to be an incredible conference.

Use the time to refresh and have some fun. Bring some levity into your life. And

in return, get CEU's, experience collaboration and of course, build compassion

for those we serve.

I will see all of you in March! And I can't wait to hear your 'stories'! Don't

forget to thank the MSHA board members and the convention planning team for

willingly and freely giving their time and energy for our benefit throughout the

year.

Happy spring!

Hoffmann, M.A., CCC-SLP

MSHA President

hoffmajj@...

http://cherab.org/information/silentnomore.html

I'm sure or others here can recommend an MD in your area.

About the hypotonia...OK going to sound like a broken record but please look

into NV. Dawn Falley has just shared about a 4 year old from her seizure

support group who was unable to walk or talk -was having seizures in spite of

medication -and walked for the first time in her life after one week on NV and

is now 14 weeks seizure free. Yes they are all shocked and I know Dawn is going

to share how her neurologist in Long Island NY is now very interested in NV as

it's having a 100 percent success rare in Dawn's seizure support group for those

that have tried it so far -again even in those that were medication resistant.

I know your child doesn't have seizures- but I do know that for athletics and

motor planning and tone the NV appears to help the body help itself in those

areas. I'm sure it will be validated. here's a page on the areas it supports

http://pursuitofresearch.org/pursuit-of-research/ Here's info to share with

your child's doctor http://pursuitofresearch.org/find-a-professional/

Here is 's contact info from St Lois University

Communication Sciences & Disorders Faculty

J. Hoffmann, M.A., CCC-SLP

Assistant Professor

Office: McGannon Hall #16

Phone: 314-977-2943

E-mail: hoffmajj@...

http://www.slu.edu/x13514.xml

=====

March 27, 2011

Although I live in the NY Tri-state area of NY/NJ/Ct I try to keep as many as

possible as close to home. We live in a very small county so only the

Pediatrician for my daughter is in the county. There just arent the right

specialists without traveling to NYC or other parts of NY, like Westchester or

Rockland. I would not suggest going too far to a doctor who might tell you, come

back in 3-6mos! Our Ped Physiatrist is a 45minute drive, but it can be done in

an afternoon. I wouldnt want anyone much further than that.The PEd ones are

harder to find. Look in the nearest childrens hospital. Or you could check your

insurance company website or find a Physiatrist who will see children but is not

just Pediatric!

My daughter wasnt holding her head up at 3mos old. There were already signs of

her special needs--a STAT flight helicopter ride the night she was born was the

very first indicator that she would need lots of special attention!Just another

indicator of the small county we're in, the nearest childrens hospital was a

helicopter ride away! They didnt even want her in an ambulance! SO I was thrown

into it when she was a few hours old!! Than five days in the NICU of childrens

hospital. So they were just waiting for a symptom and not holding her head up

was the reason to start PT ASAP! We had from that moment on to see doctors and

therapists, but you didnt have all that time. He'll get there!

My daughter was sitting with lots and lots of supports at 10-11mos old. She

slowly progressed from there. EI gave her a reverse walker at 2yo but she still

was not walking. At 2.5 she took her first couple independent steps and its like

talking, once she saw where it would get her..there was no stopping her. But I

would not consider her an independent walker before 3yo. She started special

needs prek two weeks before she turned 3 and she was walking than. So you have

some catching up time to do but you're doing it all for him now so dont worry!

They always told me, yes, she will walk but it will take her a little longer.

Maureen

>

> I still cannot get over the amount of information I am gathering from this one

place. Thank you a million times over. I was feeling confident last night and

composed a thoughtful letter to Liam's current school SLP politely inquiring her

specific experience working with apraxia and requested an IEP meeting to

increase his speech time from 60 minutes. I also started the ball rolling to

request therapy through the summer. I feel with what I have learned here and

from 'Latetalkers' my requests were based on knowledge and not just a mother's

whim. I'll let you know.

> 1)However, I am still in search of the right doctor to work with. The ped

neuro wasn't the help we had hoped for. I found the name of a developmental

pediatrician and a name of a pediatric physiatrist but only from internet

research...not from recommendation. Anyone have someone they know or have heard

good things about?

> 2) Same thing as far as finding an SLP. I was wondering if there is an SLP

association that would have records of who has taken the PROMPT training?

> 3) Is it worth taking Liam to a specialist, even if they are out of state? If

so, who would you recommend. I read about Dr. Agin but don't know if this step

is necessary.

> 4) Lastly, Liam's hypotonia (I think) continues to effect his ability to stand

or walk unsupported. From what I read this is much more than a soft neuro sign.

Does anyone else have a child who was still not walking unsupported at 3 y/o?

> On a sweet note, Liam got to spend time with his grandparents this weekend.

They haven't seem him since we adopted him last May. They were having a hard

time believing that a child who couldn't talk could truly understand everything

we said he could. We they happily have eaten their humble pie and are in shock

of how smart (and cute and sweet) their newest grandson is

> Thanks for the answers and support

> Paige

>

March 27, 2011

Getting an evaluation -an appropriate diagnosis and having someone that can help

you advocate is the most important number one thing to do. If you don't have to

drive far of course not.

I would totally agree for the private SLP that you see weekly for sure you want

that to be someone close by -but an SLP who is considered an authority to

oversee what the other therapist does (we had to do this once we moved to a

place that didn't have SLPs that knew much about apraxia near where we live now)

or an MD you only will see probably once a year maybe twice tops -I would for

sure travel because if I am going to get an opinion about my child I want it to

be appropriate for him, one I can trust and respect and that the school

professionals also respect as I will be using these professionals to help me

advocate when needed.

The good thing about where I live is that whatever causes ADHD, apraxia and

autism there isn't the extreme numbers of kids like Tanner and Dakota where I

live now. The bad is the lack of awareness about conditions other than autism.

I actually do drive over an hour when I take Tanner to see Dr. Renai Jonas- but

she's the person I trust to oversee Tanner's progress -we haven't seen her in

over a year -Tanner is doing amazing but I just want to bring him back just so

she can see him since the NV.

If we were just starting the journey now where I live in Florida instead of

central Jersey where NYC was less than 1/2 hour away (north jersey ten minutes

away) and know what I know now -I would for sure drive hours to Orlando or Miami

or Tampa or even fly Tanner somewhere. If I was starting over and only stayed

close to home which most do and I would have done too because you don't know

what you don't know...not a doubt Tanner would have been diagnosed as autistic

(in fact he was diagnosed here as " very high functioning " autistic by one doctor

years ago and I told him he needed to take a sabbatical to Jersey to learn about

apraxia!) -and then as we read here all the time he would not have received the

appropriate therapies and placement for his true diagnosis to make the progress

he has to succeed in speech to say the least.

That's why I say if you have to travel for an accurate evaluation, even for

hours and hours and stay in a hotel or fly if you can afford to -do it.

Appropriate evaluation is number one important and far too many waste precious

time with so many misdiagnosed today.

But saying all that -the SLP I just wrote about is with the university there in

St Louis

/message/101978

=====

March 27, 2011

You can go to www.aappspa.org to find a private practice SLP or to

www.asha.org for a list of SLPs -all with the appropriate training.

Warmest wishes,

Barbara

Barbara A. , M.S., CCC-SLP

CEO/ Help Me Speak, LLC

<http://www.helpmespeak.com/> http://www.helpmespeak.com

(o) 410-442-9791 (f) 410-442-9783

2500 Wallington Way; Suite 103

Marriottsville, MD 21104

follow us on FaceBook:

http://www.facebook.com/ffcentralmaryland#!/pages/Help-Me-Speak-LLC/104628852032

Call me with any questions about NutriiVeda!

>

> Hi Paige! A few years ago one of our moderators lived in St. Louis and she

loved her son's therapist there Hoffmann M.A., CCC-SLP, President of the

Missouri Speech Language Hearing Association. wrote the following about

Tricia's son

>

> 'Silent No More' a story written by Hoffmann M.A., CCC-SLP, President of

the Missouri Speech Language Hearing Association that anyone that cares for a

child with a speech delay or a speech disorder can relate to.

>

> Hoffmann, M.A., CCC-SLP

> MSHA President

> hoffmajj@...

> http://cherab.org/information/silentnomore.html

>

> I'm sure or others here can recommend an MD in your area.

>

> About the hypotonia...OK going to sound like a broken record but please look