The other Lindsey

[Guest guest]

Thank you so much for writing - and I also emailed privately.

Your postings make me feel better about posting my ramblings the

other night. I know Jodi Z. can give you some feedback on the ADHD

and Tourette's part, but I do totally understand the speech

articulation issue!!!

I have to say that that is my biggest concern right now with my

daughter -- when will she ever graduate from speech therapy!!!

Since your daughter sounds like she has other musculature issues,

the speech articulation issues for her are probably linked. Do you

mind my asking what her speech therapy is like right now? School or

private, and if school, how often and are there other children in

the session as well.

We started with school based at age 3, and after a month or two

realized that we had to bite the bullet and pay for private

(insurance had denied it). She got no where in the " speech

preschool " that they had. In one year of private, from about 3 1/2

to 4 1/2, her speech improved significantly, from about 20%

understandability to 80% understandability.

Then beginning kindergarten, we switched back to school, for 2

years. And what we found was that she didn't seem to improve. That

last 20%. Speech was twice a week, for 30 minutes but with 2 other

kids at the same time. We started private in conjunction with

school about 1 year ago, because THIS time through Dr. Harbison we

got private therapy paid for through our insurance (Dr. H fought it

by using the " articulation as part of RSS " battle -- another benefit

of using her, whew!) and we are slowly getting there. But to be

totally honest, I don't believe that if we had stayed with JUST the

school services, that would have improved unless I had done

major battle with the district to get private therapy with the

school.

The good news is that the high pitched voice does improve greatly

with age for these kids. So I have been told by Dr. H and the

therapist that working on tone should NOT be a priority. The

problem, therein though, lies in the fact that when you combine

articulation issues with high pitched voice, it makes it even more

difficult to be understood.

I hope others are able to give you some advice on your other

questions.

> I've unsubscribed several times from this list because I get

convinced over

> and over that Lindsey does not have RSS because I really don't

relate to

> anyone here. I don't want to come across rude, just honest. I

always find my way

> back though

> Lindsey wasn't diagnosed until she was almost 6, and at the time

size wasn't

> even a problem in my eyes. We were dealing with behavioral,

developmental and

> big time speech issues. SPEECH being her number one issue. We had

our 2 year

> appointment with the genetics Drs. recently and yes, he still

believes she's

> has RSS,so this is why I just subscribed again.

> Lindsey is a very healthy girl thakfully,but I was convinced she

was too

> healthy for RSS. I understand the people that are worried and

desperately need

> support, those are the ones that write the most I guess.,and I

don't feel like

> my worries are anything that the other RSS parents can relate too.

Is there

> anyone like Lindsey out there? No growth hormones, pretty healthy,

but major

> speech and developmental issues she's very loose jointed, she has

hypotonia,but

> she has great strength. She has a high pitched voice with horrible

articulation.

> she's just turned 8 and she's still not understood alot of the

time. She's

> being medicated for ADHD and tourettes syndrome. She's immature

and her social

> skills are poor. But she is the light of my life and says things

to crack me

> up every day. She's VERY independent and doesn't want anyone to

help her with

> anything. She's a very determined little girl that that wants to

learn to read

> and write, but she's having a glitch in her brain I think. Her

numbers and

> letters are still backwards lot of the time, some days there

formed correctly.

> She is not dyslexic. She is just learning to read a few words.

But her apraxia

> is really interfering with this I think. But all said and done

she is smart.

> Her IQ was normal at 5, hopefully still normal. She doesn't forget

anything.

> She processes very quick, when I tell her to do something, get

something,

> where is something. She's very quick to do it or tell me. She's

adding some small

> numbers. But for 8 she is very delayed and will be going into a

self

> contained class in the fall. She's pinches the other children and

feel awkward and

> insecure around typical kids because of her speech. She still

holds her writing

> utensil with her whole hand. She doesn't have good control

otherwise.

> Can anyone relate at all?

>

> Jennie

>

>

>

[Guest guest]

Thanks for writing .

Lindsey has received speech therapy since she was 17 months old. Privately

and at school. She's received so much therapy, and she still does, twice

privately and 3 days a week in a small group in school. Her old therapist

handed

Lindsey over to a new SLP that came to healthsouth and she's so good! She doing

a lot of reading and helping Lindsey understand the importance in saying her

sounds right. She just added a new goal-Lindsey is starting to self correct or

realizing she's off. Lindsey still has very little air sounds in her daily

speech. In isolation she can say the s sound, but she can't put it together

yet. Lindsey can say S-Un- OR S-oap but she has a big pause after the s sound.

So

we are still working on that and the dreaded F. she has the hardest time with

F. I am seeing an improvement lately though, The therapist is helping Lindsey

read a book and understanding plurals. So when she comes to a word with an s

at the end, Lindsey knows to ad the s.

Hopefully we will be going to Shands hospital soon too see if its a

structural problem, why Lindsey is having such difficulties. Your 's

struggles

with her surgery will be forever etched in my mind, so it scares me to think

Lindsey might need surgery. She is not nasal sounding, but denasal,high pitched

voice, not a good combination loll!

hugs

Jennie