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

May 26, 2010

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 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

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

Hi !

In addition to the information I sent to you in private (which I'll put below) I

have an archive on how to get services from your area below -but don't forget I

have an entire page on how to get coverage through your insurance company on our

apraxia.org page here

insurance and speech therapy

http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

Actually just checked that page and saw your comment! So know you found

that one -here's some other info to hopefully help!

Re: Just found out that Speech Therapy is not covered

Dear Sara,

Do you know for 'sure' that speech therapy is not covered by state

funded health care? What about oral motor therapy? Say your child

has trouble eating or drinking- is therapy for that covered? Play

the game -find out what type of speech therapy is covered by the

state and I'm sure if your child is apraxic you can get coded for

that. Apraxia is rarly 'just' a motor planning issue as many also

have tonal issues, weakness, sensory issues that overlap. Also don't

take no for an answer so quick. Most do -but insurance companies

count on the fact that only 10% will fight a " no " They may say " no "

again -and again only 10% will fight that second no. By the third

fight however you are not probably working with someone who has a

clue -and since you are at this point 10% of 10% (of 10%) you'll

probably get a yes.

Besides I just quickly did a search at Google and I found that speech

therapy is covered by most state funded health care. Here's a few

quotes from one of the sites:

http://www2.doh.wa.gov/HWS/doc/MCH/MCH_CSN2004.doc

" Children in special education programs are eligible for educational

services from ages 3 to 21, including nursing care, physical therapy,

speech therapy, occupational therapy, and special education.

According to the National Survey of CSHCN, about 32% of Washington's

children with special needs in this age group were enrolled in

special education programs, including more than half of children with

special needs identified as having functional limitations. Data from

a 1997 survey of school nurses in Washington showed that all school

districts in the state serve at least one child with a chronic

illness.13 Nationally, children with special health care needs

experience three times as many school absences as other children.7

These absences affect the child's educational progress and may also

interrupt school-based therapies and services that promote the

child's overall well being. "

" Low income. Accessing health care is more difficult for families

with low incomes. Among other issues, these families face problems

with transportation, difficulty maintaining continuity of providers,

and the unwillingness of providers to include in their practice

clients who are uninsured or enrolled in Medicaid.15 In the 2002

Washington State Medicaid Client Satisfaction Survey, families with

children with special needs were statistically more likely to report

problems getting care, medications, occupational, physical or speech

therapy, and referral to a specialist than families without children

with special needs.16 "

16 " Washington State Medical Assistance Administration, Consumer

Assessment of Health Plans, 2002 "

Fight for your child's rights - because we know if you don't your

child's SLP won't either. (Time for a new one even if you could

afford her!) Anyone else here from Washington State to help? Here's

some of the support sources I found at Speechville:

Support Contacts*:

Houston Area Support Group for Developmental Apraxia of Speech

Contact: Mimi Branham MA, CCC-SLP

E-Mail: teala@...

Phone: (713) 807-1131

Support Contacts*:

Contact: Robyn

Southlake, Texas

E-mail: mysticcreek@...

Contact: Marilyn May

Northwestern Texas

E-Mail: marilynsgm@...

Contact: (Liz) Morabito

Marshall, Texas

E-Mail: MBALiz@...

Phone: (903) 934-9046

Contact:

Dallas, Texas

E-Mail: lapw@...

Contact: Cheri E. , M.S. CCC-SLP

Oklahoma and Texas

E-Mail: C@...

Things to do at home -yes answers for that too!

The below link is a parent geared article I wrote for Contemporary

Pediatrics; the trade magazine for pediatric medical professionals

nationwide. The article is mainly pulled from The Late Talker book

which I co authored with neurodevelopmental pediatrician Dr. Marilyn

Agin, and International Journalist Malcolm Nicholl on things you can

do to help stimulate speech in your late talker child at home:

http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestandard//\

contpeds/492004/136315/article.pdf

Actually in many ways The Late Talker may be a help to you.

Not in that article above -but Rhonda who was one of the founders of

the nonprofit ECHO of Canada has said that the Kaufman Kit made her

at that time her daughter's best SLP when there were no SLPs around

that were aware of how to best help an apraxic child in her area of

Canada...and she's not the first to say that. You can look for a

used one -or at times people here have donated their old Kaufman Kits

to moms like you in need (so head's up to someone who's child is

doing well and you want to donate that kit to pay it forward!)

Below are some archives on ways to secure inexpensive or free therapy

services:

Thu Jun 6, 2002 3:43 pm

" kiddietalk " kiddietalk@...

Re: College and ish Rite schools

Hi Marsha!

I'm not sure about a list of ish Rite schools -however, here are

some links for Universities that have programs in Speech Language

Pathology and Audiology. Contact the Universities located in your

area and ask if they offer speech therapy services to the public. I

believe all therapy is done by graduating students and is overseen by

a PhD. They typically will provide therapy at nominal charge (maybe

$15 or less for a half hour) Of course when word gets out - at times

there is a waiting list for services - so it's worth checking out now!

US -great resource and easy to navigate:

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

Canada

http://www.caslpa.ca/english/connections/conn1.html

UK/Ireland

http://www.rcslt.org/courses.html

Europe

http://www1.ldc.lu.se/logopedi/europe/

In addition -sometimes there are organizations like the ELKS that

will sponsor children for subsidized therapy -ask around for that too

through child services, Easter Seals, or office of disability (etc.)

in your

area.

If anyone has any other comprehensive lists they would like to share -

please do! Also a good list of oral based schools for the hearing

impaired which may be worth looking into for your apraxic child is

here: http://www.oraldeafed.org/schools/index.html

If you visit Speechville and put in your state for resources you can

find a list of Universities and so much more!

http://www.speechville.com/regional-resources.html

I'm not sure if you are in the US or not -but here in the US, once children

turn three, if they are qualified for special education, they are

eligible for FAPE -a free and appropriate education through the

school -which typically early intervention professionals assist with

that transfer (a few links below). I'm not sure if it's too late to

get your child ESY (extended school year) services right now, but

other qualified preschool and school age children are receiving that

right now in your town. Either way -starting in the Fall, your

child if qualified should enter your town's preschool disabled

program -or whatever they call it where you live, where, if

appropriate, you can advocate to have specific amounts of individual speech, PT

or OT

therapy sessions written into Grace's IEP. The squeak always

gets the grease though -so it appears you may have to push to

continue the therapy that's appropriate for your child. The school

is not required to provide the best therapy -just what is

appropriate. When it comes to school law -it's complicated

below are a few links

http://www.listen-up.org/rights2/osep7.htm

http://www.stnonline.com/stn/specialneeds/sn_federalaws.htm

http://12.46.245.173/cfda/cfda.html

When you seek out of district placement -the cool thing is that you

don't have to only search other school districts, you can also

search private schools. I have found over the years in this group

that many of us had the best experience and success with our children

with more severe speech impairments in schools for the hearing

impaired. Personally I prefer the oral based schools based on our

experience and those in this group with the Summit Speech School in

New Providence, NJ. Here's a list of some others

http://www.oraldeafed.org/schools/

http://www.oraldeafed.org/schools/index-list.html

=====

May 27, 2010

, I feel your pain! We have battled with our school system for over a

year and have still never received extended Summer services. We have however,

receieved a lot of help through our county.

The Department of Developmental Delays (former MRDD) provides my son (who

is 4 and has moderate apraxia) 5 hours of speech services a month at the place

of our choice. All we had to do was turn over our speech evaluations and fill

out all the forms. They are great to work with because they really want to help

kids who need it.

As for income, my husband and I make decent livings, and we still qualify for

the DD services, so it may be worth giving it a shot Good luck.

Gretchen

(Columbus, OH)

________________________________

From: <shannonstilwell@...>

Sent: Wed, May 26, 2010 9:50:53 AM

Subject: [ ] 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 27, 2010

Thanks Gretchen, I looked into it and there is no MRDD in Texas or Houston

as far as I can see. I sure wish so! The closest college is an hour away it

looks like and the closest Easter Seals is in Austin, which is about 2 hours

away. If anyone is in Houston or the area and knows of resources, please let

me know.

From:

[mailto: ] On Behalf Of Gretchen Walsh

Sent: Thursday, May 27, 2010 6:15 AM

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

speech help for my son!

, I feel your pain! We have battled with our school system for over

a year and have still never received extended Summer services. We have

however, receieved a lot of help through our county.

The Department of Developmental Delays (former MRDD) provides my son

(who is 4 and has moderate apraxia) 5 hours of speech services a month at

the place of our choice. All we had to do was turn over our speech

evaluations and fill out all the forms. They are great to work with because

they really want to help kids who need it.

As for income, my husband and I make decent livings, and we still qualify

for the DD services, so it may be worth giving it a shot Good luck.

Gretchen

(Columbus, OH)

________________________________

From: <shannonstilwell@...

<mailto:shannonstilwell%40gmail.com> >

<mailto: %40>

Sent: Wed, May 26, 2010 9:50:53 AM

Subject: [ ] 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 27, 2010

,

Try " The Arc of Texas " : www.thearcoftexas.org

They are advocates for children with disabilities and should be familiar with

resources in your state. They also should have great classes available for you

to attend and learn the ins and outs of the system. They can also help you set

up a trust fund so that if anything happens to you (and/or your spouse) the

child will be taken care of. Once the trust fund is set up, other people can

make tax deductible contributions to the trust fund. Trust funds must be worded

correctly to get most benefits for the child.

Disabled children in the state of Texas qualify to be on suplimental SSI. That

may also open some doors for you, There are income limits for this.

There may also be programs available through your states department of Human

Resources.

If you want to try to do some things on your own this summer, you can order some

teaching activities from Super Duper Publications.

Blessings,

Sandy

May 27, 2010

Let me double check, but I think I know someone else whose child has the exact

same condition as yours..and is in the process of navigating the school system

right now. She is in Ohio...so things will be somewhat different...but she

would be an excellent resource, as she has done tons of research on the

Chromosome 22q11.2 Duplication Syndrome.

Let me go look at a few of her posts on another place we are on together..and if

I am correct I will send you an e-mail with where you can potentially get in

touch with her through..and I will see if she can post some information on the

same place for you...

>

> 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