The everyday life of a stay at home mom just trying to stay sane.

Wednesday, December 20, 2006

Let me tell you something, in case you ever come across this.
Age 5 is NOT a good age to get a diagnosis...unless you're a 5 yr old in school already.
Can you believe that they are suggesting 20-25 hours per week of intensive therapy in our home.
20-25 hours.
OK, fine...it's federally funded*, highly recommended...we'll look into it.
"Looking into it" resulted in about 2 hrs of the phone giving information on my son.

"What self stimulatory habits does your son have?"
"What does he eat in a typical day?"
"Does he have friends?"
"Does he like to bring things up to you and share his excitement?"
"When he's playing and having a conversation, can he tell the difference between a rock, an animal and a person?"

Um...ok....yep. I think he can tell a rock is a rock and a person is a person.

"Great. We'll seeing your son has a diagnosis, he qualifies for the state Autism waiver. Go ahead and call this number RIGHT AWAY because there is a waiting list of about 8 to 10 months. The quicker you get on the quicker you'll be able to start!"

Doing a little math in my head(well, on my fingers)...Jan-Feb-March-April-May-June-July-August(8)-Sept-October(10)

"Oh, we'll there will be a problem then because Logan will be in Kindergarten in 8-10 months."

"Yes, we recommend that you do one of two things: Either hold him back a year so he can get a full year of therapy or you could have him do half days so he can fit in his therapy seeing it must be done at home"

Thinking in my head, this is INSANE! I'm not going to have my poor boy start Kindergarten when he's almost 7 years old. (He'll turn 6 two months after school starts) and I'm not going to make him that kid that has his own schedule in school. Besides, 20-25 hours a week in ADDITION to school. He's just a little kid here.**

"Well, maybe you're not interested in our intensive therapy. We do have other options here. We have social skills groups (which I DO think would be beneficial for Logan) 2x/week as well as a 4 to 1 ratio class for kids getting ready for school 1 time a week. These classes are run by therapist who can help kids make easier transitions and learn all about taking turns and sharing points of view.
RIGHT up our alley.

"Great!! I'm guessing these aren't free, right?"

"Um, no. The classes are $20 each."

$20 x 3=$60 week x 4 weeks = $240/month add on Logan's preschool we're up to $360/month. Add on the gas and frustration 3 times a week, 40+ minutes each way...we're up to again...INSANE!

OK, so I'm stumped really.
Logan has officially been entered in the school district as part of the special ed program. (that was hard to type)
He'll possibly get some therapy through the school district, but it all depends. You don't always get help, even with a diagnosis. And even if we do qualify, I'm not going to take him out of the preschool he's been going to for 1 1/2 years at the last half of the year. I'm just not.

Oh! And then 2 of the people I was talking with asked if I had applied for freaking Medicaid? Medicare? I don't remember which. No, I haven't.

So, that leaves us scratching our heads. Like I possibly said in my last post, you get this diagnosis, get your options, but then it really is up to you to figure it all out by yourself. People are talking about 'advocates' to help you along. To me it just sounds like one other person to pay, but what do I know?

* it would cost more than $80,000 for one year! again, insane

**Of course, I want the best for my son, but I also feel that being a little kid is important. He'll have forever to be 'working' all day. I want him to come home after school and run around with the neighbor kids...if he wants.

4 Comments:

Blogger Amie said...

Wow, that is so much info to wade thru! And desicions to make! Is there some kind of group in your area where you can meet other parents of children with Aspergers?

10:36 AM

 
Blogger Amie said...

Wow, that is so much info to wade thru! And desicions to make! Is there some kind of group in your area where you can meet other parents of children with Aspergers?

10:39 AM

 
Anonymous Anonymous said...

I'm sorry that this is so hard, I really feel for you. But after reading this, I think you're right. All of that does sound like too much. I'm at a point (seven months after our diagnosis) where I'm comfortable with Thomas and the quarkiness he gets from being on the Autism Spectrum.
From the very start I never wanted him to be in the intensive behavior changing programs, not only because I don't think he needs it, but because I want him to be 3 years old. His diagnosis doesn't have to take that away from him, does it?
You've probably done Logan a world of good already just by making sure he's in a good preschool program, and by being good, attentive parents.
I think sometimes after a diagnosis we expect someone to tell us something about our child that we didn't know. But really, you're the one who knows what's best for him and what his challenges are. Start reading lots of books on Asperger's (you probably already have) and you'll begin to get an idea of where he fits in.
It does get easier. I was sick about my child being designated "special needs" in the school district too, and I still get a twinge when I type it. But there are so many different kinds of children with different special needs, it's really all relative. He's going to get some extra help because he has good parents who want the best for him.

1:58 PM

 
Blogger formerteacher said...

You know, there is something totally wrong when parents are left with 'options' like those. That is a lot of info. to digest!

I agree with you about wanting your son to still be able to be a kid. I sure wish the waiting list wasn't so long!

I wish you luck as you navigate the system, and work to come up with a program that best fits your son's needs.

2:10 PM

 

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