Re: Apraxia question from India

[Guest guest]

H susan,

 

I am not saying i don't fight for her.  I feel like i have fought for nothing

but getting her help.  I decided not to fight for punative and compensatory

damages from the birth process.  Plus she does have a rare chromosomal disorder,

so I am sure that they would just argue it was the karyotype and not the injury

that cause the cp.

 

Believe me, I have learned to fight.. the therapists, the school, the doctors. 

She deserves it.  I just decided not to fight the obstetrician.  

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Sharon Lang

From: <agirlnamedsuess@...>

Subject: [ ] Re: Apraxia question from India

Date: Sunday, April 5, 2009, 8:58 PM

Sharon,

About the DS thing and them refusing to refer you to a specialist, that law has

recently been changed. :0)It is called the prenatally and postnatally diagnosed

act. One act I personally fought for. Now, I am fighting for the quantitative

testing to prevent misdiagnosis.

About fighting in childhood, I completely understand. We have not filed suit

against the midwife and unfortunately, we have been in a fight since his birth

for various reasons. (First, to get him home. Second, for a correct diagosis.

Third, which has been the longest and current fight, to get appropriate services

for him. I cannot give up on this fight, as it affects the quality of life he

will have without any language. (Hence, why I am looking for outside sources to

help me, such as tutoring, that I know are available... it is just finding the

right source.) We finally got a lawyer to fight for the services that have been

a struggle to get, even when he was enrolled in public school. That took years

of persistence, as not many will do it Pro Bono and not many are that qualified

or brave enough to fight government authority. Most people would have walked

away orgiven in to " their " needs, but Iam just not willing to cmpromise his

health anymore. (Which

btw, I got three doctors letters now :0))) and two are VERY specific like we

discussed. They still are challenging us and it might end up in court...really

sad.)

>

> We did not have as traumatic of a delivery, but forecpt and vacuum were part

of it. I won't go into elaborate details, but we chose not to pursue a lawsuit

either primarily because I did not want to focus all my energy on a law suit. I

was not sure she woud have a normal life span, and I just did not feel i could

tolerate myself if I had spent her childhood fighting and then lose her.

>

> That being said, i did go to the one obstetrician in the practive of 7 who

never saw me and explained that I was instructed by my specilaist to not have a

vaginal delivery due to another condition, yet they over ruled him. I was also

supposed to have been sent to a perinatologist, given my family history of

having a sibling with ds. The obstetrician refused to release me to the

specialist.

>

> I have read quite a bit on medical malpractice and they say that people don[t

sue doctors that they like. I really liked this one doctor and since he was not

involved in the care, I told him exactly what I thought and felt and that more

money was never going to change the outcome in her life. I have also heard that

the people who should sue the doctor and have a good case, rarely do. I did not

want to be bitter and I never wanted to regret having her, and I never ever have

.. I don't think I would feel the same way if I had to testify over and over

again about the burden of having a special needs child.

>

> This is our story, and our decision. Thank goodness my hubby and i totally

agreed on this.

>

>

> sharon

[Guest guest]

THAT was exactly what I was thinking yesterday. I do have to say, no wonder it

is often misdiagnosed. My son can't do the 's' sound though, lol.

Oh, and doing the fish oil? Yes, even my hubby has noticed a difference!

________________________________

From: music_maker_68 <music_maker_68@...>

Sent: Sunday, April 5, 2009 10:24:53 PM

Subject: [ ] Re: Apraxia question from India

Funny..my daughter also can say the s sound. It is so interesting how this

whole apraxia thing works so differently in each child. Sure makes it hard to

deal with!

mom to , Luke, Kurt and

>

> That's interesting because " s " is one of the sounds my daughter can say which

surprised all of her therapists but then she always has to be different. lol

>

> That just shows how different each of our children are and how we can listen

to the information from others but still

> need to keep an open mind and remember that our children might not do the same

as others and vice versa.

>

> Carol

> Trishasmom

> She isn't typical, She's Trisha!

>

> From: Maureen

> Sent: Thursday, April 02, 2009 5:53 PM

> @groups. com

> Subject: [childrensapraxiane t] Re: Apraxia question from India

>

>

> the slp has said that is one of THE last sounds to come with APraxia

children.

>

[Guest guest]

it does sound like we have that in common -very few people understand or

should I say, understood, my position at that time. I mean now it's clearer.

One thing I forgot to mention in my situation was that Dakota was delivered

transverse...and the (brand new) doctor 'knew' Dakota was transverse(!)...but

" thought he'd turn during delivery " That is another reason the poor little

thing was so injured...and me too.

Glenn and I were never told Dakota was transverse -all I knew was that I was in

a lot of pain and my blood pressure was shooting up off the roof -dangerous high

and all of a sudden -and my blood pressure is typically low normal. I was so

healthy prior to this in my pregnancy -worked out every day -did a back flip in

a pool at 7 months (yes I now appreciate how dumb that was)

I was later told by the same doctor, not my doctor who was on vacation during my

delivery -but this brand new out of medical school doctor... that only 2 % of

American babies are born (the V word -not Cesarean) because it's so dangerous to

both the mother and the baby. If I only was given a Cesarean none of what

happened would have. I can tell you that when medical professionals look at

Dakota's birth records I've heard more than once " I can't believe he was born at

an American hospital "

Then again...I sometimes wonder if what happened to Dakota helped me to help

Tanner when nobody knew what was going on with him (and just about nobody knew

what apraxia was!)And worse...the only sites out there for apraxia in children

ONLY talked about verbal apraxia and not any of the soft signs or oral apraxia

that Tanner had when he was first diagnosed at 2 years 10 months old. You

see...Tanner was completely nonverbal outside of the sound " mmmm " or the word

" ma " I do know it changed me inside...so if you wonder why sometimes I get

really pissy on this grouplist with certain things...it's because I no longer

accept that just because someone is a professional that they are right. I

question everything more than ever -and I am fully aware that most don't do

that. I mean I was that person before. And I lived through incompetence -and

it is true that what doesn't kill you makes you stronger.

=====