Friday, February 1, 2008

Circles....

Two years ago, when I was a newbie to the world of cpse and all the joys that go with it, I was faced with the agonizing decision of what do with bubs. I really wanted to keep him at home, status quo with our 19.5 hours per week of aba and 30 minutes 2x of o.t. I figured I would take him to a typical preschool a few times a week for socialization and peer modeling. I wish I could make that screeching to a halt sound over the computer, because those plans were circular filed after my first meeting with the Department Chair for special ed. She told me it wasn't my decision, and my first reaction to her was 'what...oh no she didn't....' and I told her ultimately it was my decision. I am his mother for heaven's sake. OK, so we didn't hit it off that well, and I am still not all that comfortable with her. She 'suggested' that I check out bubs' current school (which in spite of my complaints as of late, I am still thrilled with). Bubs' school has the word 'autism' in it's name and I gotta tell you that was a biiiiiiigggggggg turnoff to me. I was still clinging ever so lovingly to the pdd-nos thing, even though it's a matter of semantics to me now, back then it was a huge deal. Ok, so I didn't like it cause of the name. Bubs school has a reputation of it being kind of intense, the children all have their own rooms (cubicles to some) and work one on one for the most part of the day (when they first start out there). Combine that with the fact that I felt this chairperson lady to be a huge bully and I became somewhat 'defensive'. I yelled and told her that she had no idea who my son was, and where he should go to school. It was bad. I soon realized that I was not going to get the same services that e.i . so generously provided (thanks to my rediculous property taxes) when we transitioned to school district. They were not going to budge on that. So I went and looked at a few center based programs. The school district hooked me up with another parent from the district who had a son who attended the program. She was so kind and listened to me in my raw emotional state. She comisserated with me and shared that she had the very same reservations about putting her son in 'the school'. She also told me how great her son was doing.

My husband and I got the call that there was an opening at the 'autism named' school and I didn't want to even consider it as an option. We went anyway. We were pleasantly surprised to see a relatively cheerful place that had happy children's artwork displayed everywhere. Kids were actually out and walking around (supervised) and not chained to the wall in their barracks. Some even said hello to us. It really challenged what I had previously believed. Dare I say I was......wrong (never)?

So we took the plunge and enrolled him there, I apologized to the scary Chairperson for being so 'defensive' and I redeemed myself and became a parent member for the district. Yesterday I got a call from the district that they had some parents in for their transition meeting and felt their son would really be a good candidate for 'bubs' school'. Surprise surprise they (the parents) were not keen on the idea, for the very same reasons we were not keen. The school district wanted me to call and give her our experiences with 'the school' since not too long ago we were in the same boat. I called. I made it clear that I wasn' t a henchman sent from the district to coerce them to enroll their son in a center. That said, it kind of took me back to a not so happy time in my life. I felt so bad for them and all the critical decisions they had to make, when they should have been celebrating their child's upcoming 3rd birthday. It also made me think, wow... who would have thunk I would be on the other side of that phone call.

7 comments:

Marla said...

That is interesting that you clung to the PDDNOS diagnosis. I was upset when a neurologist insisted we have that diagnosis when I wanted the Autism diagnosis. This was a long long time ago. But, I do remember being upset. For me it meant even less understanding to be found in our public school system with the PDDNOS diagnosis. I just kind of felt like it was a catch all. Funny looking back how these things would upset me so. But, at the same time I was trying so hard to get a school situation to work and nothing would.

bonbon momma said...

Marla,
I clung to it because I was in the first stage of 'grief', denial. I thought that if it wasn't called autism, then it wasn't autism. Plus in new york,at least on L.I., it didn't make any difference for services. I would have paid someone large sums of money to tell me bubs was not on the spectrum, at least in the beginning. A year later I wouldn't have believed them if they told me that. Now it doesn't matter to me what it's called, but it took me a while to get there.
Pdd-nos is really a strange diagnosis, and it's very very confusing. It's way easier to just say asd and leave it at that.

drama mama said...

I'm glad that you can help others, too.

It took me until Miss M was almost 6 to accept the PDD NOS label. Now I don't care what they're calling it.

Except now, they might be shifting to ADD.

She's still the same kid, you know?

xo

bonbon momma said...

Drama,
I would not be surprised if my son got an adhad dx somewhere down the line. It looks more like that every day. Again, just semantics as far as I am concerned, bubs is just bubs to me now. But it took a while for me to realize this.

Cyndi said...

I think it's great that you can help the newbies. I'm finally not hating Matthew's preschool anymore (he's been there a month now) and actually enjoy the time I have to myself. Sounds like your son is getting a great education!

Maddy said...

I was completely freaked out by PDDNOS as I'd never even heard of it. I didn't like the autism label much either, although I had heard of that. Now we've added so many more additional labels, most of which I can't even spell, that I've just put the whole lot on the back burner.

They're just who they are, irresistible.....well to me anyway.

What a jolly good egg you are.
Best wishes as always

Queen of the Binge said...

I think it's great you can help parents that are new to it all! I know that when Harper was born, finding support and advice from other parents going thru the same thing was a godsend. I really don't know what I would have done without it. My feelings at the time of her birth and how I feel about her injury now are so different and it's nice being on the other side of it now.