Saturday, March 1, 2008

Amelia Bedelia

AMENDED: BELOW, you'll read how I had an epiphany about Amelia Bedelia. I didn't by any means think it was an original thought -- I had a hunch that if I searched on Google, I'd find some funny but possibly obscure articles mentioning just the same thing I thought of, but it was nowhere near so subtle... practically ALL the kajillion hits diagnosed Amelia's ASD! So I'm late and learning as usual...patience, I beg of you...

I've had many people ask how yesterday's IEP meeting went, and it's all too big to process let alone describe just yet. Maybe I can compare it like being a soldier returning home, "So how did that war go?" Well, there were a lot of battles...

But here is the aha moment I had: I am thinking Amelia Bedelia must have been on the spectrum, and I never knew it. You remember Amelia Bedelia from your childhood; she was the little housekeeper who diligently followed your directions. You said dust the furniture, so she covered them with dust. I swear, I am going to put my Google skills to work when I finish this post to see if other parents realized that Amelia was on the spectrum after having their spectrum kid described to them by a speech language specialist.

So the speech person at our IEP seemed to adore and pity our rooster in a way that melted and terrified me. She gently told me that, because he was so charming, and she was rooting so hard for him to succeed, that she tried about nine ways to get him to successfully answer the receptive language part of her assessment. He wouldn't or couldn't but definitely didn't, and had no real interest in trying except for his desire to please the nice lady. But he was in an unfamiliar room filled with books and toys, and he had his own agenda, too. She asked him to keep his eye on the puzzle, and this is where he turned all Amelia, didn't you guess. Yep, he bent down, and he put his face -- no, his eye -- on the puzzle. For a minute. Then he was off on more tangents.

Oh, I know all about the tangents. I know about the made up words ("durst" is the most interesting, and I promise to post about durst later) and I know that despite having an age-appropriate vocabulary, it is an enormous struggle for the rooster to answer questions on topic, or have any kind of back and forth dialogue. But surely I should have noticed this literal aspect more. I guess it's true that when you are too close to something, you can lose your perspective.

This language person was trying to explain that our rooster has a significant -- in fact, I think she said huge -- gap between his expressive and receptive language scores, and that it's hard to tease all that apart from his distractability to know what is going on, but it definitely, clearly does not bode well for his auditory processing. Of course, they are not allowed to "diagnose" auditory processing. But this team really seemed skilled at diagnosing lots of things with the caveat that, "but we are not allowed to DIAGNOSE that, so we just use it as a DESCRIPTOR." Among things they liked to dangle at us, as they amitted having no clue exactly what to make of his unusual language, they threw in DESCRIPTORS such as aphasia-like, "sort of like a person with a brain lesion," and -- can you hear my fingers wince on the keyboard -- "schizophrenia-like." This last business was not from the language expert but from the school psychologist, who is no only not on my holiday card list, but looks like she and the grinch have the same hair dresser. Anyway, forget her. It was the speech person who seemed to best get the rooster and all his issues. She described him so well that there is no way her evaluation won't be useful as we schlep from -ist to -ist armed with the epic that is the rooster's file of documentation.

I felt a physical sensation of pain everytime she pityingly gushed, "He was clearly TRYING. Trying SO HARD. But his pragmatics just ARE NOT THERE."

Who would have thought I would have a child with, of all things, trouble expressing himself? (Self expression might be my only strength in life! And his dad writes for a living!) Most people see his BLONDE hair, take note of the THICKTHICK dark auburn tresses that make my husband and I look like we could be siblings if we weren't spouses, and say, "Where did you get this blonde boy?!" I don't know why he's blonde or why he has hundreds of vocabulary words that he struggles to put together in any meaningful way, but I am going to put every word in my dictionary to work for our family to seek out help for him. I will ask and listen and read and learn, and I will talk and explain and beg if I have to. And I don't mean I'll do this with just the experts or with the doctors and ists or with the blogosphere -- I'll do all this with my boy as well. He really truly does have a lot to tell me. I just have to keep my on him, so to speak. DURST!


Anonymous said...

The Amelia Bedelia connection is interesting. I had no clue. But now I'm trying to recall if we've read any of the books in that series...

As for the IEP, well I had to nod in agreement about the school psychologist. Seems they all get pulled out of the same pot. Sigh.

Sounds like it was a difficult meeting, emotionally, for you. Hopefully the next one will be a little bit easier. I so wish there was a way for school districts to humanize the process for parents. We shouldn't have to walk away "shell-shocked."

Anonymous said...

I am sure you know this but you don't have to agree with what they put in the report. What was said about our son in the report that got him the IEP was innacurate, WAY too harsh and limiting and I made them remove it. They did.

Also, I have found that the school district really is only good at dianosing the easy and the obvious. Anything that requires more work and investigation will be missed by them. Even if you pointedly ask them about it, they do not have the skills to do difficult a more diagnosis.

Once we got our son in with a speech pathologist that did Social Thinking therapy (forget traditional speech therapists), we finally got a reasonable assessment of his skills. Now we are finally getting some help. In addition to this we have him in OT who does Floortime which has been a lifesaver.

The bad part about our long haul to find help is that in our state the insurance companies are only required to pay until the kids turn 7. Now he has struggled longer AND we have lost thousands of dollars in insurance benefits.

Just some thoughts for you....

tulipmom said...

Your Amelia Bedelia epiphany is brilliant! I haven't read any of the series since I stopped teaching 7 years ago but I had them in my classroom so that means they're somewhere in our storage room. I do recall Amelia taking everything literally. Of course, at the time, I had no clue about Asperger's.

It takes me a long time to decompress after those IEP meetings. There's just so much to digest. Thank goodness for the speech pathologist ... her repot sounds remarkably similar to that of our school psychologist (who surprisingly this time around appears to have a clue) .... charming, the huge discrepancy between expressive and receptive language, having his own agenda, the made up words, difficulty answering questions, distractability ....

I hope your next meeting is easier.

kristi said...

Oh my gosh, I have had several IEP's and cried in every one of them except for this last one I had in January. I went in with certain expectations and they got answered and addressed so I walked away feeling jubilant! The school psychologist diagnosed my son as depressed (but i took him to a neurologist who gave us the diagnosis of PDD) so now the school is finally having their autism team evaluate him. It just means more therapies....I'm all for that!

Niksmom said...

Ironically, I hadn't made the Amelia connection either! But it makes sense. From the time we began to suspect Nik's autism (even before diagnosis), Niksdad and I began trying to avoid things which Nik might take literally; we didn't want to confuse him with things like "Take my hand" instead of "Hold my hand."

It never ceases to amaze me how schools make such diagnostic pronouncements with (a)no authroity whatseover and (b) no consideration for the effect of delivering such a pronouncement in the middle of a meeting. It's a great way to throw parents off balance and make them come from a place of desperation; they'll agree to almost anything suggested b/c they think it will help their kids.

I learned that recording our IEP meetings (a) made them generally more civil and (b) gave me a more accurate record of what transpired since I usually got blindsided with some sort of pronouncement and got distracted.

Interesting that the SLP mentioned auditory processing; as I understand it, that cannot possibly be diagnosed at such a young age (we've discussed it w/one of our many -ists, as well). I would ask for an independent evaluation and ask that it be given equal weight as the school's evaluations.

PBear said...

My son has Asperger's, and sensory integration issues (common on the autism spectrum), and auditory processing difficulties (much better to write out a list of directions than to tell him verbally).
It sounds like at least you are getting a lot of help for him early- we didn't start the ordeal until he was 5, and didn't get the right answer until he was almost 10.
I'm working on my school psych program now, so don't paint us all with a tar brush :-)

(My sister told me about your blog, apparently she knows you from U Magazine)

I would recommend going here if you want another sympathetic ear: and sign up for the discussion board. Great group of people there, and does not require an AS dx to be there.


Sustenance Scout said...

G, I've been reading for a while, taking it all in, thankful those with experience are here to pitch in with specific suggestions since I have none. Except to keep writing about it, for your own health, for those of us who have no clue what you're going through, and for the parents searching for you and your insights. Hugs from Denver, K.