Hello, another new person here

[Guest guest]

My name is , I have a 30 month old son who was diagnosed with apraxia just

3 months ago. Yesterday we went to a developmental pediatrician to confirm the

SLP diagnosis, and found that he also has sensory issues (which I pretty much

knew cause my older son also has them), tortocolis and a lazy eye.

We have been receiving ST from EI since May. Early July I approached our SLP

and expressed my frustration that I just didn't feel like anything we were

working on was having any real results or helping at all. No " Floor play "

seemed to be motivating and that was pretty much all she was doing. It was at

this point that she told me of her suspicion (which I found odd because when he

was very first evaluated this is what I thought it was but was told I was

incorrect). Since then she has worked more targeted at making more solid letter

sounds and just in the last couple weeks I have been amazed to hear him trying

to say sooooo much more. Of course, if I didn't know the context of what was

going on, I would never know what it was he was trying to say, but just the fact

that he is trying to communicate verbally now I feel is a huge step in the right

direction.

The medical diagnostic eval from the dev ped/ST/OT recommended more therapy.

Now we only receive once a week for an hour. I received a call within a couple

hours of arriving home from our caseworker basically letting me know (this was

taken as a message so I don't know really how this was said) that just because

more therapy was recommended doesn't mean we were going to get more therapy. I

had asked my SLP before about getting more, or at least more frequent/not as

long and there is a scheduling prob that she doesn't think she could come more

often. They were very adamant at the medical eval that this was needed and that

I probably also was going to have to fight for it. I realize EI is all about

teaching the parent how to help the child, I have no problem with this. I want

to help him, I want to learn about what I can do, but my concern is the time is

ticking by while I am learning and he could be getting better. I am not an

expert, I have no previous experience with speech disorders. Of course, my

husband has also recently been laid off so the only insurance we have is

Medicaid (in our state called AllKids). So I am really kind of left depending

on EI for everything. I did find a local group of parents with children who

have apraxia but I struggle a bit to feel like I am in the same boat because it

seems they just take their child whenever/however they want to and just pay for

it as they need to. This is not an option when you have no income except for

unemployment. At the eval they also said that Medicaid may pay for some center

based therapy or that I should be able to get EI to pay for center based

services if they just don't have the people to be able to get the additional

therapy in. I just think that they are trying to cheap out because we are not

rich and need so much but can pay for so little.

My son was evaluated at expressive language age of 14 months. When we first

started therapy he only had a 35% delay and now it is 50%. He says Mama, Dada,

ball reliably and well. He makes TONS of environmental sounds, cars, animals

etc, just alot of them are a bit garbled. He does some approximations of

cold/hot, on/off, up/down, out. Today we were able to get him to say " bubble "

repeatedly (although still garbled, it was the best, biggest word I have heard

him say). Nana for banana, sometimes also shuz (shoes), bye. I had previously

joined another group but not gotten a whole lot of helpful responses. I also

just posted a question in response to someone else's asking about fish oil

supplements and what to give.

If there is anyone that can give me any advice about navigating the system here

in IL re: EI and/or Medicaid/Allkids I would appreciate it.

My older son has ADHD and possibly Aspergers. After dealing with his struggles

for several years already, I thought my younger boy was going to be " the normal

one " until the words just weren't coming. At first I was just relieved that we

could get a definite diagnosis (because I hear 10 different things from 10 diff

docs with my older son) and that it was a known issue with known treatments.

But the further in I look I see it is not as clear as it appears, and I can't

quite get over this sadness that he is going to have these hurdles to face and

that his speech might not ever be normal even with intensive therapy. He has SO

MUCH to say. I just want to hear it, to hear him. Thanks for any advice or

ideas you can give me.