DISASTROUS School Meeting

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I met with the special ed preschool teacher and the special ed director. I don't like the preschool lady anyhow, she calls my house at 7:30 in the morning all the time and wakes my kids - and if you have autistic kids you know what happens next. The director was even worse. Even though I had my daughter's evaluation there, she poo-pooed everything on it. She said, "Oh she must have it mild," and "Usually we'd see some sign that she has issues but she seems normal," and so on. WTF? I got mad, I couldn't help it. Just because she isn't screaming, rocking or flapping and she is capable of speech doesn't mean she doesn't have an ASD. I said, "Um, yeah, that's why the call it a spectrum."

I have AS myself, and I lock up and lose the ability to make eye contact when pressed. I knew what I wanted to say but I couldn't access any of it. She kept asking, "What do you want from us?" and I was like... Finally I said she would have to ask more specific questions of me because I couldn't answer broad ones. I tried to relay that I want understanding when my daughter does experience her issues, that I want OT for her and that I don't want her punished for things beyond her control. In the 45 minutes we were there, the director said she felt every one of my concerns were age appropriate. I'm SO glad she has is so f***ing smart. She said she didn't think my daughter needed OT. How could she know this? She asked about sensory issues and I mentioned water (probably not the best one to pick, but like I said - I locked up). She said, "Well most kids resist having their hair washed." I said yeah, but do most kids make odd noises, flail their arms about, gasp for air and act as if they're being tortured by slow drowning with even the most caution a parent can take to avoid any facial contact with the water? She looked at me as if I was exaggerating. I'M NOT!

My daughter's issues are real. I feel so upset right now. It's fine if she can make it through school without needing interventions. I did. I was punished constantly, ridiculed by peers and teachers alike, labeled a problem kid and had numerous report cards go home saying what potential I had but I was "wasting it" by not paying attention. From the way my hair felt to the ticking of the clock to all of the interesting colors, textures and accessories my peers had...there was no way. I fought, I tried, but I failed (well, I passed, but you get the idea). EVen though I was bright, I was excluded from gifted programs that would have done me a world of good. I suffered. A lot. My life was hell. I want better for her.

Now I am exhausted. That meeting took everything out of me and I just want to sleep. I'm so disappointed. I guess I just needed to vent.

{hug} (or unhug, if you prefer)

At the preschool level, it is so hard to differentiate between NT and non-NT behavior. Let's face it, little kids are strange to start. Keep busting on them to get what you need. Maybe you should try having a written agenda or talking points. That's helped me in similar meetings.

On the phone calls, I started turning off the ringer on the telephone after hours. If someone is dead, it isn't urgent. If someone is undead, I probably can't fix it anyway. My family was mildly annoyed, but have adapted. In three years, not a single "urgent" thing has been missed.

Unplugging the base would probably take care of it.

Yeah, but I don't want to miss the messages. And knowing me I'd forget to plug it back in.

Plan another meeting. Bring with you some evidence, literature, to support what your daughter needs. You should not have to argue her ASD. She has it. End of story.

Just refrain from defending what she has and point to specific literature that describes your daugher, connect it to her issues in preschool and at home, and then present this to the director.

When it comes from just you, it means nothing. When you're quoting it from Tony Atwood or reputable researchers knowledgeable about ASD's, this is irrefutable.

Type it all out before you go to the meeting, exactly what you want for your daughter. Don't waste another moment at the meeting arguing whether or not she has an ASD.

Make sure you that you point out the ramifications of what happens when a child with autism does not receive the proper interventions versus a child that does receive ABA therapy, OT and the rest early on. This particular child has a greater advantage over a child that doesn't receive these interventions. This is glaring and can not be refuted.

If she refuses to listen to you, then I'd get an advocate to support me (or lawyer if you can afford it).

equinn

i get very nervous at meetings. i always think i'm going to forget to say something important.....because of this fear, i end up writing a list of questions/comments that i can refer to. .....if you have access to your child's formal evaluation, you can also pull out quotes about her difficulties from the dr.........i also think it's good to have handouts that you can give to everyone at the meeting - i've given handouts on AS, bullying, and anxiety disorders....

I'm sorry you're having a hard time, Mikomi.
Is there any way you can homeschool? I was able to homeschool my son with Asperger's, which saved both of us a lot of grief, but was not able to homeschool my daughter with autism plus. Unfortunately the public school was not able to handle her very well either, and I was not allowed to be more than fifteen minutes from the school in case they needed me to get her during one of her violent rages. It was a constant struggle. Constant. I wish now I had tried harder to homeschool her, but I'm not sure what I could have done.

Thanks. I'm definitely going to put together some information for the next meeting.

I have considered homeschooling, but she does really love going to preschool. I think as long as she continues to love it, it will be good for her. We also live in a very rural area, with NO kids on our entire street or within walking distance at all. There are almost no resources for community involvement or opportunities to be with other children. School is it. I hate it here. I feel like homeschooling would solve some problems and create others. If we could move out of this hole, everything would be better. But my husband likes it here. At least one of us is happy, I guess.

I'm in a sour mood today. I probably shouldn't even be posting. But thank you all for the advice. Next time I won't go unprepared. I also hope to have a letter in hand from my daughter's doctors regarding her needs in relation to her ASD. Or maybe I ought to go in there and tell them what life was like for me going to school without help for my AS.

I hope that you find someone who will listen to you, because even if you have a list, they might think you still have some kind of agenda. It's weird.

When I took my son in for the initial intake, I brought a list of all of his traits and his kindergarten teacher wrote one for me as well. When the clinician looked at it, she started interrogating me about it. I got the feeling that she thought that I just wanted him to have this disorder (for some skewed reason), so I printed out a list of traits online or something and brought it in. The "investigation" turned away from my son and immediately to me as soon as I busted out that list. I was infuriated.

The next person we saw was excellent, however, and I am glad that I found someone who understood and took us very seriously. Good luck!

Mikomi, I am glad you are posting even though you are in a sour mood. You are getting the feelings out and dealing with them. That will be positive for you and your family, long run. I know that everyone here is much more than their posts, so don't worry that I'll ever read the vents and start thinking you are all negative. I know that isn't true. It's just hard to find a good place to release the crap, you know?

Perhaps you will find it easier to deal with them in writing. I would also seriously consider sending them a version of your first post. You so eloguently state what your concerns are, and the issues you feel will need to be addressed at school for your daughter, long run.

I am glad that your daughter likes preschool. That suggests that for now, at least, things are working for her. But you aren't wrong to want to look ahead. Many of the issues you see are things other kids may just grow out of, but AS kids do not. AS kids need to learn to accommodate, instead, which will be much slower and will take some assistance. Yes, it's tough to tell at the preschool age (my son was not diagnosed until age 7 and I honestly do not think he COULD have been diagnosed earlier) but that doesn't mean it's impossible. Mommy instincts rule here, IMHO.

ivetastedflight: yeah, I also felt that they believed I wanted my daughter to have AS. I have AS. Going to school with this SUCKED. I do not want her to endure her school years in the same fashion I did.

DW_a_mom: thank you. Actually I decided to write a letter and I've been working on it all morning. That and whatever letter her doctor wants to put together will hopefully help.

I'm just so disgusted with our school district right now. I didn't care much for the interrogation I got. I'd like to know THEIR agenda.

Mikomi I really feel for you & can empathise with everything you're going through with preschool. My son is 8 in July & was dx with AS 3yrs ago & even with this DX when fighting to get more support for him at school & all you get in response is 'oh we haven't noticed anything wrong' you seriously begin to question if not your sanity , then certainly the schools. When I explained to his present teacher the need for care when talking to him & that he is very literal , her response was to turn to my son & say ' oh you really shouldn't take things literally @ If only I'd thought of that

Today I've been collating evidence of my sons difficulties & needs to appeal against a refusal of DLA purely because the only people they contacted about my son was the school who because my son doesn't kick off at school , he goes very withdrawn & he saves his glorious meltdowns for home. Filled in the form as if he didn't need any help.
This is despite us having problems getting him to school everyday, bullying come about from problems with poor social skills & him actually coming home with soiled pants & all his lunch (he has a packed lunch because of his very limited diet & rigid routines in how food looks), as nobody had the time to look out for him & remind him to go to the bathroom or eat his lunch.
Despite his difficulties with handwriting , coordination in an IEP & subsequent referral to the Inclusion services. Yet apparently none of this was mentioned.

Do they seriously think given the choice I would want my son to have all these issues.
Don't get me wrong I love my son dearly (he was the precious surprise but special bonus after my OH had a heart/lung & liver transplant 11yrs ago). Life would be far simpler if he didn't have AS . Not having slept through the night once since he was born is no picnic. Not that I'd change him as AS is part of who J is .

Luckily I should be able to get letters supporting my appeal from his consultant & the Nurse Specialist who J was referred to because of his sleep problems . What infuriates & amazes me is WHY didn't the DLA contact these people in the 1st place after all they're far more qualified & knowledgeable on AS than the school .

Appologies for hijacking your thread , as you may tell I'm a bit wound up.

I hope you are sucessful in getting more support from the pre school.

Mikomi,

I've had very similar issues this year (described at length in other posts). I have 3 sons - 2 diagnosed with Asperger's and a new Special Ed teacher that started in January told me my boys were only mild and simply didn't need support. She withdrew support and the boys deteriorated quickly into multiple meltdown mode.

Many complaints later and a new Special Ed teacher and our life is almost back on track.

I find meetings difficult. I spend hours getting ready for meetings. I type out notes of my sons' strengths and difficulties. I also type out what accommodations I want. I e-mail these notes to everyone before the meeting.

I then go through the notes at the meeting.

In an ideal world, a caring/knowledgable/understanding set of teachers would drive the program. We had a wonderful, caring, knowledgable teacher last year - the boys did well. I relaxed at the beginning of this year, with the expectation that all Special Ed teachers would be like this.

Now I will never relax again. I will always be in the driver's seat.

I e-mail frequently and cc to the Principal, Vice Principal, Special Ed teacher and classroom teachers.

Good luck!

I don't know if it makes you feel any better that these problems are common all over the world. Sigh.

Helen

I am bringing a lawyer to the next IEP meeting. I will simply say "I know my rights, and I have brought my lawyer today to observe."

He will sit in the back of the room, nod his head, take notes and not say a word. The autism community has told me that THIS WORKS!!

So, I'm gonna try it!