Re: Re: Feeling totally lost and defeated. Need speech help for my son!

May 26, 2010

I just did a search for Easter Seals in Houston and only found Austin. I

wrote them. Thanks. As far as colleges, how would I found one that offers

that? Just call? The closest to us is a community college.

From:

[mailto: ] On Behalf Of liralendoncov

Sent: Wednesday, May 26, 2010 12:36 PM

Subject: [ ] Re: Feeling totally lost and defeated. Need

speech help for my son!

I had my son evaluated through TX state here in town. I called to cancel b/c

we too are strapped for money and they waived the fee. I am now seeing if

they will give him a grant or scholarship for their summer speech program. I

also met a lady in San who had her son in speech with the Easter

Seals, but they aren't here in town. Maybe you could check them out?

>

> Do you have any local colleges that have speech programs? We have a

> wonderful one here in Springfield, MO, and they do a sliding scale.

> Just a thought... hang in there!

>

> [ ] Feeling totally lost and

> defeated. Need speech help for my son!

>

> I am hoping someone can help me with advice. My son has only

> been in PPCD (Preschool Program for Children with Disabilities) since

> his third birthday (one month ago) and the school district said he

> doesn't qualify for the summer program because they haven't been able to

> see him long enough to see if he regresses. They said he may next summer

> if they see regression.

>

> I am frustrated because our insurance will not cover speech

> services and we cannot afford to pay out of our pocket. Are there any

> grants or national programs to help parents pay for speech therapy out

> of their pockets? I have googled and searched and read forum after forum

> but feel totally overwhelmed and completely lost. He has not officially

> been diagnosed as apraxic but I emailed our neurologist with the new

> info I have learned here. He has Chromosome 22q11.2 Duplication Syndrome

> which means nothing to the insurance company and no one knows what to do

> with that diagnosis at the school etc. since it's a relatively newly

> identified syndrome. He qualified for PPCD at the school for speech

> delay. A developmental specialist told us a few weeks ago that he is on

> the autism spectrum, but the school said we will have an ARD in August

> and set up an eval by their specialist for an official diagnosis. The

> thing is, we are not sure if he is on the spectrum. We are pretty sure

> (and his OT is too) that he has Sensory Processing Disorder. He flaps

> when excited, when he sees fans, etc and lines up his trains and plays

> with them all of the time, but he is social with adults, smiles, etc.

> The neurologist and geneticist originally said they don't think he's

> autistic, that it's caused by his syndrome, but we have been told he may

> get more services if he is on the spectrum. Very confusing.

>

> He is very smart and tries to speak but no one can understand

> him (except a few words like did it, done done done, car, dada, mama,

> nonono, etc). He struggles to get sounds out but will repeat the same

> long paragraph twice. It sounds like total gibberish to most but I can

> tell he is saying something because he repeats the same thing. When I

> tried to get him to say car he got it out but took forever to get the c

> out and sounded very guttural. He has never blown out a candle or blown

> bubbles or blown at all and has never licked his lips. He will push

> stuff off of his lips into his mouth. He gets some speech at PPCD right

> now but won't during the summer. He was in ECI from about 19 months of

> age until he graduated out at the age of three and was sent to PPCD the

> day after his third birthday. They focused very much on his very delayed

> walking. He started walking a few months ago on his own after orthotics,

> OT, PT and a walker helped him gain strength. He still has balance

> issues though and falls a good bit. I am in Texas. I know this is

> rambling, but I feel very lost as he has symptoms that are all over and

> it's hard to classify him so that he can get services covered by

> insurance. I have fought the insurance over and over and the geneticist

> and neurologist have called as well as the speech path that did his

> intake at the place he gets private OT and PT. Would a diagnosis of

> apraxia help? The reason the insurance says they are denying is because

> of the reasons I read in The Late Talker. He didn't lose his speech

> through tramatic brain injury or an accident.

>

> Do I have any options to get him help with us being financially

> strapped? We make over the amount required to get things like Medicaid,

> etc. I have heard of waiver programs, but was told there are very very

> long waiting lists. He is so young and I don't want to miss this early

> window of learning opportunity or lose the progress he has had at school

> so far. It seems almost like only the well off or those with a means to

> get money somewhere get the best treatment for their children. He has a

> 60 visit cap on any type of therapy as well and we are at about 32

> visits (OT and PT) so far.

>

> Thanks for your help.

>

May 26, 2010

You would want to look for one that has an established program for

speech therapy. I would probably use google... then try the phone.

Sorry... I was lucky enough that a developmental center close to us

recommended them.

Meyer

[ ] Feeling totally lost and

> defeated. Need speech help for my son!

>

> I am hoping someone can help me with advice. My son has only

> been in PPCD (Preschool Program for Children with

Disabilities) since

> his third birthday (one month ago) and the school district

said he

> doesn't qualify for the summer program because they haven't

been able to

> see him long enough to see if he regresses. They said he may

next summer

> if they see regression.

>

> I am frustrated because our insurance will not cover speech

> services and we cannot afford to pay out of our pocket. Are

there any

> grants or national programs to help parents pay for speech

therapy out

> of their pockets? I have googled and searched and read forum

after forum

> but feel totally overwhelmed and completely lost. He has not

officially

> been diagnosed as apraxic but I emailed our neurologist with

the new

> info I have learned here. He has Chromosome 22q11.2

Duplication Syndrome

> which means nothing to the insurance company and no one knows

what to do

> with that diagnosis at the school etc. since it's a relatively

newly

> identified syndrome. He qualified for PPCD at the school for

speech

> delay. A developmental specialist told us a few weeks ago that

he is on

> the autism spectrum, but the school said we will have an ARD

in August

> and set up an eval by their specialist for an official

diagnosis. The

> thing is, we are not sure if he is on the spectrum. We are

pretty sure

> (and his OT is too) that he has Sensory Processing Disorder.

He flaps

> when excited, when he sees fans, etc and lines up his trains

and plays

> with them all of the time, but he is social with adults,

smiles, etc.

> The neurologist and geneticist originally said they don't

think he's

> autistic, that it's caused by his syndrome, but we have been

told he may

> get more services if he is on the spectrum. Very confusing.

>

> He is very smart and tries to speak but no one can understand

> him (except a few words like did it, done done done, car,

dada, mama,

> nonono, etc). He struggles to get sounds out but will repeat

the same

> long paragraph twice. It sounds like total gibberish to most

but I can

> tell he is saying something because he repeats the same thing.

When I

> tried to get him to say car he got it out but took forever to

get the c

> out and sounded very guttural. He has never blown out a candle

or blown

> bubbles or blown at all and has never licked his lips. He will

push

> stuff off of his lips into his mouth. He gets some speech at

PPCD right

> now but won't during the summer. He was in ECI from about 19

months of

> age until he graduated out at the age of three and was sent to

PPCD the

> day after his third birthday. They focused very much on his

very delayed

> walking. He started walking a few months ago on his own after

orthotics,

> OT, PT and a walker helped him gain strength. He still has

balance

> issues though and falls a good bit. I am in Texas. I know this

is

> rambling, but I feel very lost as he has symptoms that are all

over and

> it's hard to classify him so that he can get services covered

by

> insurance. I have fought the insurance over and over and the

geneticist

> and neurologist have called as well as the speech path that

did his

> intake at the place he gets private OT and PT. Would a

diagnosis of

> apraxia help? The reason the insurance says they are denying

is because

> of the reasons I read in The Late Talker. He didn't lose his

speech

> through tramatic brain injury or an accident.

>

> Do I have any options to get him help with us being

financially

> strapped? We make over the amount required to get things like

Medicaid,

> etc. I have heard of waiver programs, but was told there are

very very

> long waiting lists. He is so young and I don't want to miss

this early

> window of learning opportunity or lose the progress he has had

at school

> so far. It seems almost like only the well off or those with a

means to

> get money somewhere get the best treatment for their children.

He has a

> 60 visit cap on any type of therapy as well and we are at

about 32

> visits (OT and PT) so far.

>

> Thanks for your help.

>

May 26, 2010

Thank you so much for your time and the info. I am going to call. That is

about an hour drive from us but I am going to call and find out more info.

From:

[mailto: ] On Behalf Of liralendoncov

Sent: Wednesday, May 26, 2010 2:27 PM

Subject: [ ] Re: Feeling totally lost and defeated. Need

speech help for my son!

look up the colleges that offer speech pathology or communication disorders

as a degree and call that department and see if they do evaluations. My son

was seen by a professor and two graduate students and the rest of the class

was behind a mirrored window observing. They wrote up a 5 page report on

their findings and recommendations. I had heard about the clinic through a

friend whose son was evaluated for sensory issues there. then I googled TX

State speech and the clinic web page came up.

http://www.class.uh.edu/comd/uslhc/

http://facstaff.uww.edu/bradleys/cdprograms.html#tx

according to this list it looks like University of Houston is the only uni

to offer a speech clinic in Houston.

> >

> > Do you have any local colleges that have speech programs? We have a

> > wonderful one here in Springfield, MO, and they do a sliding scale.

> > Just a thought... hang in there!

> >

> > [ ] Feeling totally lost and

> > defeated. Need speech help for my son!

> >

> > I am hoping someone can help me with advice. My son has only

> > been in PPCD (Preschool Program for Children with Disabilities) since

> > his third birthday (one month ago) and the school district said he

> > doesn't qualify for the summer program because they haven't been able to

> > see him long enough to see if he regresses. They said he may next summer

> > if they see regression.

> >

> > I am frustrated because our insurance will not cover speech

> > services and we cannot afford to pay out of our pocket. Are there any

> > grants or national programs to help parents pay for speech therapy out

> > of their pockets? I have googled and searched and read forum after forum

> > but feel totally overwhelmed and completely lost. He has not officially

> > been diagnosed as apraxic but I emailed our neurologist with the new

> > info I have learned here. He has Chromosome 22q11.2 Duplication Syndrome

> > which means nothing to the insurance company and no one knows what to do

> > with that diagnosis at the school etc. since it's a relatively newly

> > identified syndrome. He qualified for PPCD at the school for speech

> > delay. A developmental specialist told us a few weeks ago that he is on

> > the autism spectrum, but the school said we will have an ARD in August

> > and set up an eval by their specialist for an official diagnosis. The

> > thing is, we are not sure if he is on the spectrum. We are pretty sure

> > (and his OT is too) that he has Sensory Processing Disorder. He flaps

> > when excited, when he sees fans, etc and lines up his trains and plays

> > with them all of the time, but he is social with adults, smiles, etc.

> > The neurologist and geneticist originally said they don't think he's

> > autistic, that it's caused by his syndrome, but we have been told he may

> > get more services if he is on the spectrum. Very confusing.

> >

> > He is very smart and tries to speak but no one can understand

> > him (except a few words like did it, done done done, car, dada, mama,

> > nonono, etc). He struggles to get sounds out but will repeat the same

> > long paragraph twice. It sounds like total gibberish to most but I can

> > tell he is saying something because he repeats the same thing. When I

> > tried to get him to say car he got it out but took forever to get the c

> > out and sounded very guttural. He has never blown out a candle or blown

> > bubbles or blown at all and has never licked his lips. He will push

> > stuff off of his lips into his mouth. He gets some speech at PPCD right

> > now but won't during the summer. He was in ECI from about 19 months of

> > age until he graduated out at the age of three and was sent to PPCD the

> > day after his third birthday. They focused very much on his very delayed

> > walking. He started walking a few months ago on his own after orthotics,

> > OT, PT and a walker helped him gain strength. He still has balance

> > issues though and falls a good bit. I am in Texas. I know this is

> > rambling, but I feel very lost as he has symptoms that are all over and

> > it's hard to classify him so that he can get services covered by

> > insurance. I have fought the insurance over and over and the geneticist

> > and neurologist have called as well as the speech path that did his

> > intake at the place he gets private OT and PT. Would a diagnosis of

> > apraxia help? The reason the insurance says they are denying is because

> > of the reasons I read in The Late Talker. He didn't lose his speech

> > through tramatic brain injury or an accident.

> >

> > Do I have any options to get him help with us being financially

> > strapped? We make over the amount required to get things like Medicaid,

> > etc. I have heard of waiver programs, but was told there are very very

> > long waiting lists. He is so young and I don't want to miss this early

> > window of learning opportunity or lose the progress he has had at school

> > so far. It seems almost like only the well off or those with a means to

> > get money somewhere get the best treatment for their children. He has a

> > 60 visit cap on any type of therapy as well and we are at about 32

> > visits (OT and PT) so far.

> >

> > Thanks for your help.

> >

May 26, 2010

I would just research colleges in your areas online and look at the departments

they have, if there is a speech and language or may be under

communication-that's where they would probably list it if they have a speech and

language clinic.Â Have you checked with your state laws also regarding

insurance coverage>? I thought I remembered that Texas (that is where you are at

right?) had passed a law on it. Maybe I'm thinking of a different state.Â Just

curious what insurance do you have? We have Cigna and were denied for both of

our boys because of the very same reason, it's awful I know! It should be

against the law for an insurance company to deny all our kids the right to learn

how to talk!Â Google speechville and there site should come up that will give

alot of information dealing with insurance companies etc. And have you checked

the apraxia kids website? Good luck!!From: Stilwell

Subject: RE: [ ] Re: Feeling totally lost and defeated. Need

speech help for my son!

Date: Wednesday, May 26, 2010, 1:01 PM

Â