Lately I’ve been troubled about what I know is coming up in the next month or two. Chee’s MFE and the potential diagnosis of Autism (i.e. PDD NOS) or Asperger’s.
I also know that had Chee been properly evaluated when she was 2, she probably would already have the diagnosis. Still.
Still it’s going to be somewhat of a hard pill to swallow. It’s one thing for me, her mama who loves her and knows every single thing about her – the good, the bad, the exceptional, the difficult – to say that she probably has Autism. It’s a whole ‘nother thing for someone esle to show me, in black and white, all of my daughter’s weaknesses and call it a disorder. They don’t know the real Chee, I will think to myself, they only know the side they see at school.
But that’s kind of the point, isn’t it?
How she is in the classroom is what matters to the school. Supporting her in the way that she needs in the classroom is what it’s all about. I feel fortunate to be in a school district that is all about providing as much support as they can. Still.
An official label diagnosis. The majority of my readers (I think) have a child with an Autism diagnosis already and are probably thinking, “Yeah, so? It’s just a word. Nothing changes. Get over it.” Still.
I’ve been skirting the diagnosis issue for about two years now. In the back of my mind I have been hoping that she would progress so much, so incredibly, that come Kindergarten everything would be fine and she’d just sail right in.
Even now, I admit, to hopeful thinking that when they do the MFE they’ll say, “Oh she’s so great, she doesn’t need any help at all.” However, the reality is that the wonderful progress we see at home is not being revealed in the classroom.
Anyway, on to the silver lining that I alluded to in my title.
In Ohio (where I live), if you have an Autism diagnosis, you can apply for the Autism Scholarship Program (ASP). This scholarship provides up to $20,000 that can be used to provide an education outside of the child’s school district.
Why this is a silver lining, for me, for Chee, is because my biggest concern for Chee is the size of the classroom. We live in a very, very large school district. And while it is excellent, it is still large. Her K classroom will have 24-25 students.
My fear is that Chee will always feel uncomfortable in that large of a classroom, and she will rarely get the kind of personal attention that I think she would benefit from.
And while I realize that an IEP is supposed to mitigate those concerns, the reality is, let’s be honest, that 20 minutes of speech therapy twice a week isn’t exactly … a lot. Hand holding during transition times are good, yes, but not exactly … personal.
With the ASP, I can get financial assistance to send her to a private school (one smaller) that could do a better job of meeting her educational needs.
That’s a silver lining worth investigating.
16 comments
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January 6, 2009 at 1:25 pm
DOMINO
It’s not just a word. It’s a label.
A necessary grief.
January 6, 2009 at 3:03 pm
jessica Bern
I know it’s hard to see a silver lining especially when it comes to our kids but they are there. Life is full of the hard stuff but when they come with an upside, you just gotta be thankful and I know that you are.
California can’t even a afford it’s light bill never mind anything for education.
January 6, 2009 at 7:21 pm
Tonggu Momma
It’s difficult for us to trust others to avoid putting our children in boxes… because that’s what people tend to do. (How’s that for a convoluted sentence?) But YOU know… and Chee knows… and we know… that Chee is more than a word, a label, a diagnosis. She is so much bigger than that.
January 6, 2009 at 7:45 pm
goodmum
I hear you. I too am thinking that we just might eventually have a diagnosis somewhere on the spectrum. High-functioning asperger’s is my guess. But. Still. The doubt. The worry. It’s all completely natural and allowed, I’m sure. I hope that Chee gets the help she needs. I KNOW that you’ll get that for her.
January 6, 2009 at 7:53 pm
Ashli
I can understand why you have a lot of mixed feelings about this. I also feel that you will do the right thing for your precious little girl. We are on the verge of a frightening diagnosis that I’ve been meaning to talk with you about — after three years of various problems in school despite significantly great creativity and brightness, my oldest is having a harder and harder time functioning in the classroom. She’s been seeing a counselor for a year and a half. Her grades are slipping in the areas where she doesn’t have intense interest. And her counselor is finally saying the words I’ve been dreading to hear — ADHD (Inattentive type, used to be called ADD, — typical for bright, creative girls, not so much boys). I don’t dare talk about it in my blog. Feels safer to do so here. Only told three people have we told. We are still in the assessment phase. In any case, I can understand why just the DIAGNOSIS is scary, even though it doesn’t change what you know about your child and even though it means you can get her better help. Sorry for highjacking your blog …
January 6, 2009 at 8:10 pm
Laura
oh trust me, I get it. It is a big deal. Here’s my take: yes there’s a stigma. But once you feel the stigma (as opposed to dreading it), you can start to put it behind you. I don’t know if that makes any sense. And I hate to be all corny and politically correct, but darnit, different really is underrated. Neurological difference is arguably responsible for some of the greatest minds of our time. Best wishes in this new stage, and I hope that the silver lining materializes…
January 6, 2009 at 10:05 pm
Korta
I haven’t gotten my daughter diagnosed yet. I SHOULD… and I really suspect it’ll be a mild autism with hyperlexia. And I know I should find out, but I’m only just now admitting it to myself, to have someone tell me it IS would be VERY hard. And she’s going to be six years old this weekend, so I’ve really left it way too long. On the bright side, her kindergarten teacher has been fabulous, and she’s adjusted very well to school…and even better, she’s been growing and improving a lot since she started there. Part of me hopes maybe she’ll grow out of it, but realistically I know she’ll always be different. I just don’t want to hear yet HOW different, I guess.
I think you’re very brave and wonderful, doing the right thing for Chee. She needs it, and that’s what matters most. But I really, REALLY feel your pain! Good luck!
January 6, 2009 at 10:55 pm
Patty
I know what you mean. I have struggled with this so much. At times I have been convinced that Danny was on the spectrum, but I still didn’t relish anyone telling me so. Turns out, the doctor told us last year that he WASN’T on the spectrum, but I still have some doubts about that. The thing is, these are our CHILDREN, our lives and loves. Of course, it is difficult to have a label attached because it is just one more reminder that they are different. Plus, we worry that other people won’t see beyond the label to what wonderful kids they are.
I remember our first IEP and how difficult is was for me that these people kept throwing around the words “special ed.” And I was a teacher for 6 years before this, so it is not like i didn’t understand professionally what it meant. But this was personal. And I cried on the way home because it was painful. But, I guess we do what we have to, right?
January 6, 2009 at 10:55 pm
Quirky Mom
I’m a little surprised to see you getting more ready to accept an autism diagnosis. You’ve seemed resistant to it before now. I hope that whatever diagnosis comes down the pipe, that you can use it to get Chee the best education possible.
January 7, 2009 at 12:18 am
hopeauthority
I don’t think moms who’ve come before you expect you to “get over it”. None of us wanted to hear the word “Autism” attached to our children. It WAS a big deal and its ok for you to feel that way about it. The important thing is that you are facing it…so hard for parents to do when you want with all of your being to make it go away instead.
But I like your silver lining attitude. I used my son’s diagnosis to get him extra services that he would not have gotten without it. Having the diagnosis means you can help Chee more. It only feels like a label in the beginning. Trust me.
One word of advice though: Try…real hard…not to let your mind tell you that Chee will be totally mainstreamed and completely “recovered” by such and such age. Despite heroic efforts and many interventions, it may take longer to get there or it may never happen. I was guilty of that and it just set me up for more disappointment and frustration as that deadline I set passed by. But I was so overwhelmed initially that the way I coped was to tell myself “This autism thing is going away by the time he hits kindergarten!” (I’m sure God got a good laugh at that one!)
January 7, 2009 at 9:27 am
kristen
Wow, you’ve generated quite a discussion here. Yes, I absolutely understand what you are saying. And even when you think you’ve accepted the diagnosis, you still wind up fighting against it, or being surprised by it depending on the day of the week.
Even after my darkest moments, I always come back to what one of your commenters said here: different is not a bad thing. My son is bright, creative, loving, intensely curious…he has a fabulous, colorful and wildly imaginative mind. Sometimes that’s not the best formula for success in public school where the mantra is to tow the line and conform. How lucky you are to have the option for financial assistance and alternative schooling.
Hang in there. Chee is so lucky to have you in her corner.
January 7, 2009 at 10:30 am
pixiemama
No one wants the diagnosis – even when we know it’s what our children need. I hurts – way more than it should.
But later, you might find some comfort in it. Sometimes, when Foster is really OFF, screaming because he’s afraid of some completely innocuous thing (like lotion?) I think “There is a name for this. It is not his fault; it is not my fault.” Because when he was 2 and scared ME half to death, I didn’t realize, and I didn’t know what to do. I thought I was a bad mom, raising an out-of-control kid.
And having your choice of schools is a fantastic thing, because “no child left behind” doesn’t seem to fit children who think outside the box.
January 7, 2009 at 3:09 pm
rhemashope
I can relate to what Kristen commented. Even though my daughter is so obviously impacted by autism (there was no question), there are still days when I am absolutely shocked. So I can understand your struggle. I also understand that you will do what ever is necessary to get Chee the best education possible and if that means a “label”, so be it.
The chance to send Chee to a private school definitely sounds like a silver lining.
January 7, 2009 at 9:06 pm
Patty
I will keep thinking of you guys during the evaluation process. Its not an easy process to be in, either for the parent or as the teacher. Just a word of advice, if you do go the private school route, make sure you do a LOT of research into the resources that the private school sector has to support Chee’s diagnosis. I know you will, but the teacher in me wont let me not say it. We recently got a student back in the public school system who has a diagnosis, went to private school because mom and dad thought that they would be better for their child and their child’s diagnosis, and it turned out after a year, the child was never serviced at the private school, and when they were called on it, they said mom and dad knew all along they didn’t have the resources. Lots of heartbreak and tears, and lots of trash talking back and forth.
January 7, 2009 at 9:36 pm
More on that silver lining « goodfountain
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January 7, 2009 at 11:18 pm
Natalie Spontak
I just read your last two posts and it was like deja vu. I JUST posted something very similar tonight. We had our first appointment with the developmental pediatrician today and she told us that she believes that Hannah will receive either an Asperger’s or PDD-NOS diagnosis along with SPD. This is of course all pending on the psych eval and any additional testing that needs done, but it’s finally been said out loud now by an expert in development and it was quite a shock even though we’ve had suspicions. I feel your anxiousness. Seems like we will travel this path together. Good luck on coping with it all.
Natalie