Saturday, October 23, 2010


Ben's ARD meeting(Admission, Review, and Dismissal--it only took teaching for about six years to figure out what that stood for) is Monday afternoon, and I am so anxious about it I can hardly stand myself.  His last ARD did not go well, seeing that his PPCD (Preschool Program for Children with Disabilities) teacher saved up a bunch of concerns, all the while telling me everything was fine, and then listed about a dozen behavior concerns in a note read by the diagnostician while she wasn't even there.  I felt like a bomb had just been dropped on me, while the diagnostician and pre-school teacher frowned at me and said, "Well, surely she's made you aware of these things before.  They can't be a surprise, since it is so easy to email you." 

Yes, he is my son, and yes, a very few of those behaviors were concerns at home, and yes it is VERY easy to email me, but a lot of them were things we had never seen, since he is far more anxious at school than at home and that is when those behaviors rear their ugly heads, and she had indeed FAILED to mention them.  So, YES, it was a surprise, much like an earthquake.  We had to have a principal/parent conference to get down to the bottom of it somewhat and establish communication schedules.  I am not exactly worried about that kind of thing this time, since I have the Autism Assessment Summary and we had already had him assessed by a private doctor before allowing the district to assess him (which I highly recommend doing, by the way), but I do have worries.

I am afraid they are not going to provide Occupation Therapy services, or that they won't allow him to have it frequently enough.  I am afraid he will struggle educationally because of his Asperger's issues and that they won't do enough about that.  I am afraid his teacher is not actually going to be able to carry out the intervention plan that the committee chose.  And I am very afraid she won't tell me if she can't.  Ben talks much better now, but he can't explain whether or not something like that took place.  He does have a different PPCD teacher this year, but I have found that the most awful thing has happened.  I don't trust his school, or even teachers in general, very much any more. 

I am a teacher and I work my butt off teaching in this very same district and it has been a very harsh wake-up call to realize that this is a problem in my district, in my son's school, and with my son's education and chances for success.  I am far from perfect in any aspect of my life, but I do work hard to be a good teacher and to give all of my students, regardless of their challenges, every chance for success.  I do believe having Ben and being on the other side of things has made me a better and more understanding teacher, and while I would like to believe that would be true of all teachers who are parents (or who are not), I have learned that is not true.  Ben's education and future are just too precious to gamble with, and so of course I am stressed about it.  Severely.

Saturday, October 16, 2010

The Very Public Eye

I took Ben to grocery shop at the local super center last weekend, and, unfortunately, noticed the same thing I usually notice: the staring.  It wasn't very bad that day, as he didn't throw any tantrums, but it did happen.  And it did bother me.

Walking through the parking lot holding my hand and sitting in the grocery cart with a juice box, Ben usually looks just like a non-Autistic kid.  He doesn't stim (flap or rock repetitively).  He smiles and talks and tells me which groceries he likes and which he doesn't. 

Sometimes, when the bustle and noise of Wal-Mart are just too much for him, he shrieks and throws tantrums or puts his hands over his ears and cries, but that isn't what happened this time.  On this particular day, he hummed.  Mozart and "Peter and the Wolf".  Loudly.  Throughout the whole entire store.  And he pretended the bananas were musical instruments.

People did stare, both at Ben and at me.  I suppose, if you aren't familiar with Ben and have never encountered a pre-schooler who loudly hums classical music while pretending a banana is a flute, that you might take a second look.  I might take a second look.  Heck, there was a woman there with a large blue and pink weave that was pretty startling, and I certainly took a second look at that, but I didn't stare at her until she left the aisle.  And when I saw her again five minutes later, I didn't stare again the entire length of the aisle.  It's not polite, and while I am hardly Miss Manners all the time, I know how uncomfortable it is to be stared at and I try to be mindful.  What people wear or what their kids do really is their own business.

Thankfully, Ben doesn't seem to notice, but that doesn't make it all right to do it.  He is a child.  And while he may not be infatuated with Spider Man and doesn't sit in the cart clutching Buzz Lightyear, he likes what he likes and those things just happen to be musical instruments.  It might be a little odd for a four-year-old to be immersed in pretending to play a bassoon, but it's not a harmful interest.  And the humming of Mozart may have been a bit loud at times, but we weren't in a library and he did not scream or get upset one single time.  I would not think a thing about it except that people stare.

And, really,  I still don't.  We nurture that interest, just as we would if it were soccer or dirt bikes or Buzz Lightyear.

This is when that "Didn't your mother teach you not to stare?" T-shirt would really come in handy.

Friday, October 1, 2010

Not the End of the World

A friend of mine who has a child on the spectrum said, upon hearing that we had decided to suck it up and have Ben tested, "Remember, even if it isn't what you wanted to hear, it's not the end of the world." 

At that time, I was still hovering between denial and sort of realizing Autism might actually be a piece to Ben's puzzle.  But despite having begun to see some symptoms in him, I walked into that office determined to disagree with whatever the doctor said, no matter how smart and experienced she was.  I had read about Asperger's and just knew that wasn't it; maybe he was on the spectrum somewhere in that murky low end, but he did not have Asperger's.  I had prepared myself to hear "Autism Spectrum", and I had even begun to try to accept that, telling my mom, "I've decided it just doesn't matter.  The diagnosis won't change him and I will love him just as much as I do now."  But I was still determined that, whatever the doctor said, I was going to strongly disagree.  It was my issue with defiance that was speaking.  I'll just blame it on that.

I was sort of right, which means I was also sort of wrong.  I was wrong that it wasn't Asperger's, obviously, and I was wrong that I wouldn't be bowled over by that doctor's great big brain and all her experience.  Even though the words on the Internet did not fit my child, her deeper knowledge of Asperger's did.  It explained quirks that I knew were issues but attributed to other things, and it also explained quirks I didn't even know were concerns.

I was right that, in the big picture of our lives, it doesn't matter.  And I was right that, of course I love my child just as much as ever, with that all-powerful, end of the Earth-reaching Mommy Love that we do not know exists until we become parents.  It has also helped me understand him better, and I am learning more and more ways to help him.  And even though finding ways to help him will probably be a life-long journey, knowing about that little piece of Ben's puzzle has definitely added to our lives and has not taken anything away.  I still have my wonderful, smart, funny, sweet, mischievous Ben and I love him more than ever.

The Asperger's diagnosis was not the end of the world- not even close.  It has been the beginning of a better understanding of my child, less harsh judgement against myself as a mother, and that journey we are on to help Ben be happy and successful.