celeste's post (this is VERY long )

[Guest guest]

Hi Celeste, -- thanks for all the information. Believe it or not I do know a

fair amount about IDEA and FAPE and all that stuff, as I spent 7 months working

for The Arc of land/Partners in Policymaking program. Because I was the only

person in the office not directly affected in some way (I thought) by what we

were doing, I probably didn't pay close enough attention.

As I said in my first post, there are lots of things I could tell you about

Harry - not the least of which is that his tendency to clinical depression is

most likely inherited in some way (runs rampant throughout both sides of the

family, including me). Also, this is a kid who has always gone his own road,

even when he walked into trees (literally, for a while when he was small). He

has had no friends to speak of (with the exception of one boy who has been his

friend since they were four and we moved here, but who has " gone cool " in the

last year and a half) since kindergarten. Never got invited to birthday parties.

Was always the last one picked for teams, was even asked to leave teams on

occasion (he decidedly not athletic!). He has developed an ironic, sophisticated

sense of humor that doesn't compute with his age-mates (although they are

starting to catch up). Middle school was a nightmare - not only did he get

verbally abused on the bus, but he was harassed in the halls - always in a

" below radar " way that couldn't be pinned down. Between that and the raging

hormones, the depression settled in somewhere between6th and 7th grades. His dad

didn't want to label him depressed (nor did I, but if it fits?), and truthfully

doesn't believe depression is a real " illness " . (It's a character flaw.)

However, his grades were so bad, and he was so angry and sad all the time, even

saying that he wished he were dead, that I HAD to do something. Thus, his

therapist entered the picture. He had seen a couple of others, whom he

completely stonewalled...but Mindy he talks to. She and I gradually concluded

that a psychiatric eval was in order, and so to the meds, which after some trial

and error have helped considerably (although you can only see it looking back).

Now - enter the hearing issue, first in spring of 8th grade (he is 9th now).

That's when the audiologist/ENT first diagnosed an actual loss of hearing (prior

to that we weren't always sure if it was selective or not!). After this last

visit, Harry's reaction to the suggestion of an FM device was " hey, cool! " and

he seemd to like the idea that he could actually understand what the teachers

were saying. He never appears to be bothered by being different - if anything,

he has cultivated that persona. Takes a perverse pride in having other kids

think he's a bit crazy. It's a tangled web.

As far as the school is concerned, I didn't know they were the ones who should

be paying for the evaluations - but I would have done them anyway. And for the

most part they have followed the IDEA guidlines - the first meeting was to sign

permissions for testing, give us the booklet and explanation, and go over what

they planned to do with him; and agree on a date for the post-test meeting.

Because we were out of school for nearly two weeks here ( snow ) the last part

was't completed until yesterday, and the meeting is Tuesday. This is also ok

with me - because I dont' want to put it off, and I talk to the psychologist

every other day, and they don't think they are going to recommend an IEP based

on the original reason for the assessments, which was concerns about Harry's

psychological health (theya ctually thought for a while that he was psychotic!

This is so funny as to be ridiculous, but you have to get to know him before you

realize it. He is perfectly capable of pulling adult chains if they ask stupid

questions - such as, do you think Superman is a real person?)

All that being said, I also have a booklet called " Know Your Rights " (or

something like that) which details exactly what you are entitled to do, know,

and have in this process. I find it very helpful; I got it from The ARC. My

child has a mild hearing loss, a complete inability to organize himself, and a

few characteristics which prevent him from being able to " see " personal

boundaries. He is extremely bright, engaging, humorous, and bored to death in

school (although this could be because he has't been able to hear all of hwat is

going on...). Now - after they tell us on Tuesday that he doesn't have ADD or a

learning disability, and don't recommend an IEP, I am going to ask that they

proceed with an evaluation of his situation as a hear-impaired child. This feels

really strange to me, because I have all along thought of his

school/interpersonal problems as being emotionally based. But, taking what you

said about his depression being a result of his hearing loss, and looking at the

whole picture, it makes great sense that this has been an issue for longer than

we know. His loss is only mild, granted; but apparently that is enough to mask a

speaker's voice in a room with ambient sound, and in school that is vitally

important.

Sorry to run on like this...as for being old, I know grandmothers younger than I

am! My children will tell anyone who asks (and many who don't) that their mother

is 50 (alas, it's true). I just laugh!

thanks for listening to all this. We just want so much for Harry to feel

comfortable in his own skin, feel at peace in the world. Maybe we will find a

way.

Lynda