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

[Guest guest]

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.