Introduction and call for help

[Guest guest]

Hello everybody!

My name is , and I am looking for ways of helping my 4.5 year

old son Conor, who has Apraxia and Autism. Though we have suspected

he had Apraxia for a long time, it was only diagnosed in April of '07-

- then due to IEP red tape we have only been trying to address it

through the educational system since October. We live in

Massachusetts.

It seems that Conor's Apraxia affects his speech production, his

ability to use his mouth, and his fine motor skills. For instance,

he can only produce a handful of sounds, m, a, with consistency,

others very erratically. He does not know how to control his tongue,

lips, etc -- can't blow, hold breath, is just learning to stick his

tongue out on command, and is generally unaware of what's going on

above his neck. Fine motor-wise, he has limited ability to produce

signs because he can't imitate very well, and cannot hold up one

finger while holding down the rest unless he's physically holding

them down. His ability to hold a crayon and imitate strokes is also

affected.

I have been working on getting the school to address his Apraxia as a

primary disability along with the Autism since October. I already

started taking him to private speech therapy twice a week over the

summer (once is a co-treat with OT, the other is speech only) and

they work on oral motor exercises such as sticking out his tongue or

smiling on command, as well as specific sound production. The

private therapist he sees (paid by insurance) has experience working

with kids with Apraxia, but I can't say if she's highly experienced.

The therapist at Conor's school, however, has no experience working

with Apraxia, and doesn't seem to be doing any research to better

help him. She now consults with our private therapist for ideas on

how to work with him, which is a start.

At school Conor currently receives 4 x 15 minute sessions a week 1:1

to focus on oral motor and sound production, but my confidence is

low. The school therapist has said that progress is very halting and

Conor will be able to do something one day (or one attempt) and not

the next. She also says he gets " stuck " on something, such as

opening his mouth, and when she moves onto the next action he will

continue opening his mouth. My husband works with Conor at home most

evenings, and he seems to have the best results of anyone when

working with him. As a family we agree, however, that we are seeing

some progress, but it is slow slow slow. The other day was the first

time Conor has ever used " mom " (a word he is just now able to

produce, but not consistently) to actually get my attention. Other

times he will use sounds, but never word attempts.

I am attending a team meeting on February 5th to ask for better

services for Conor, as well as to get the Apraxia diagnosis added to

the primary diagnosis area of the IEP. I was planning to ask for 30

minutes a day of 1:1 therapy to work on oral motor and other Apraxia

treatment (though I may concede to letting them delivery that 3x a

week due to our two private sessions). I am asking for goals to

specifically address and measure oral motor/speech production tasks,

but I don't know enough to tell them what exactly the goal(s) should

say. And I am asking for a consultation/observation between the

school SLP and an expert in Apraxia in order to assess Conor's needs

and recommend therapy for him while he's at school. At this time I

would accept that in lieu of demanding they provide another SLP to

work with him, but this is where I need some advice.

1) What are your impressions of his current therapy scenario? Should

he be able to progress if he got the amount of therapy I'm asking for?

2) Is it realistic for me to ask for the consultation/observation

with an " Apraxia Expert " , especially given that I don't know of one?

3) Should I expect to have the Apraxia diagnosis front and center

along with Autism on his IEP?

4) Is there anything I'm not asking for that I clearly should be?

I am so concerned for my son, and I so desperately want to see him

making progress. I think he would if he had the right mix of therapy

frequency and duration, but I know so little about this right now

that I am open to hearing anything you think could make a difference

for him.

Thank you all for reading this far, and for having a place for me to

come to ask these questions!

Kind regards,