Monthly Archives: December 2012

Repost: The Return of the Light

12/21/12:  I wrote this a few years ago, but it is a fantastic reminder to myself.  This kid is still my light, and I am thankful for him and his tremendous growth.  He brings a light to anyone who knows him, and i am blessed to be his mother.

Blessed yule, everyone!

December 21, 2010 (the year Ben was diagnosed)
Today marks Yule–an ancient holiday originating in Northern Europe when the people needed a reminder that is can’t stay this dark forever and that eventually, the light will creep into the castle a little too early, and the work day would last a little too long, and they’d be yearning for days of warm fires, mead and a little greenery in the hall. It WAS going to get better. Yeah, it’s been dark for a while, and Sven really needs to slow down on the wenching if he refuses to shower, and those stores set aside for winter need to last. The solstice marks the shortest day of the year, but the following days will get longer. So just take it easy on the mead there, and realize the light will return.IMG_1467I have to admit, even if I didn’t celebrate Yule, this would still be an important time of the year for me. This is also the time of year my son was born. A day after solstice, as a matter of fact. On that first day that had just a little bit more light.

I won’t bore you with cliché analogies about how he is the light of my life (urp). He is, but I try to keep those sentiments to myself, else a large target for the pelting of rotten vegetables becomes visible. So instead, imma take this image in a different direction.

I was commenting to a friend about last night’s lunar eclipse that coincides with this year’s solstice (not visible here in LA though due to this Ark-worthy storm rolling through) and that it’s a great symbol. We must endure the dark in order to revel in the light. And that is what Yule is about. You burn the largest log, you bring green into the hall and you celebrate with those winter stores with those you love and live with. You remind yourselves that it will be warm again. Not tomorrow, mind, but it will warm up.

And really, that has been our journey this year with Autism. It was dark earlier in the year. All I could imagine were the negatives and the uglies. But like a good cask of mead–early intervention, a fantastic pre-school teacher, more “direction” for me and our home activities, and this blog have made the light more possible. And that light that is coming includes even more therapy, the growing of my Autie community of blogger friends and fans, and Benji himself. Everyday he shows more improvement and growth. Everyday, there is a little more light.

Forgive my Wiccan aside here, but I have to share this. When I was pregnant with him, I read my Tarot cards regularly–especially before we knew whether he was male or female. And almost every time one card would come up–the knight of swords: the bearer of the sword of light and truth. That’s how I knew he was a boy–little did I know that card would come to mean so much more. It was a truth that stung, but really, he is that light. As simple as that.

So lift your glasses friends, and gather around the warmth of a good fire. Regale your loved ones with tales of daring and truth, and cherish these times of rest. Do not fear the dark–without it we would never appreciate the light.

Now, if you’ll excuse me, I’ve got another glass of wassail to spike…

Blessed Yule, y’all.

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Including Inclusion

The other day, we’re at the park with my mom, and Ben is playing, and I lose sight of him.  I figure he’s just on the other side of the jungle gym, and I’m just about to get up, to tell him not to climb on the rock wall, when his head pops up–above the rock wall.  Climbed up that fucker like a lil monkey.  And then proceeded to slide down the slide and DO IT AGAIN.  And I say to my mom, “well, I guess he can do THAT now.”  (see?  I’m not QUITE the helicopter mom I make myself out to be)

It was that moment when you realize as a parent that your kid can really do more than you expected. And while it frightens you, while you kinda want to take that moment back with all haste, you realize, “wow–he can DO this.”

(remember that story.  There’s a point coming.)

I’m preparing for an IEP. An IEP that is gonna be a big change.  An IEP I apparently always wanted, that yet completely terrifies me.

Next Friday we discuss placing Benji in a full inclusion mainstream kindergarten.  And it’s got me in such as state that I may run out of Xanax before the week is over.

First off, of course, is the pure shock that we have gotten to this point so quickly. I really wasn’t expecting it yet.  When Benji was first diagnosed as having a speech problem (pre-autism) we were told that the prognosis may be that  with lots of work, he might enter kindergarten with his typical peers in a general ed classroom.  And I clung to that idea like a fucking life-preserver in the middle of the pacific.

And let me be clear–it wasn’t that I wanted him to be typical, or “normal”, because that shit really didn’t–and still doesn’t–matter to me.  But I was so fearful of the stigma that would be placed upon him, the judgement of others, the battle he would have to face on a daily basis for the rest of his life if he wasn’t able to “catch up”  I can still remember with stunning clarity the moment I allowed myself to face the fear of what Autism meant–and the first thing I thought was “My baby!  They are going to be SO MEAN.”

But when the A-word was mentioned, and the subsequent evals and forms and evaluation forms, and forms evaluating the evaluations, and so on and so forth,  by the end of the diagnosis, I was numb and broken.  I put aside that life preserver and put my head underwater for a while.  I figured it was just something positive those early therapists were trying to say, because they could FEEL the ugly cry just below the surface.  And yeah, I wallowed in that for a bit.  Or a month.  Or something.

But like many parents in my situation, eventually, I snapped out of it.  And I embraced the programs in which my son was involved, and saw improvement–MARKED improvement–and I made sure he got every gods-damned service he could get by right, so that I could help him grow and become the amazing kid I already knew he was.

And I forgot about mainstreaming and inclusion.  Because it didn’t matter anymore.  I knew what my job was as advocate: not to change him, but to help OTHERS understand how “Au-some” he was.

Well, ok, and help him learn a different response to his frustrations rather than screaming.  But that goes without saying, no?

We entered Kindergarten this year, and it’s been…an experience.  He has some super sweet and wonderful classmates, and I’ve met a great group of Autism moms.  But the class just isn’t a fit.  Because it turns out it isn’t the High Functioning class I was told it was.  Nor is it on the general education track, which is where he should be according to the IEP.  So, as the school struggles to cover its out-of-compliant ASS, the powers that be observed my boy and declared him ready for all day mainstreaming.  Inclusion.  Right now.  In Kindergarten.

As previously predicted.

And, Ladies and Gentlemen, I am scared shitless.

Because those fears I had–about the stigma and battles and judgement?  Just came to the forefront.

We were insulated in special day.  Sure, the class itself might be shorted or judged, but there was a nobility in the class standing together in the face of that judgement, you know?  It was always an issue of “you just don’t KNOW these kids” when one came face to face with ignorant statements and judginess.  There is a camaraderie among parents of that class–who do not look upon your kid with a frowny chin-waggle if he chooses to simply stand there and flap with joy.  They understand your struggles, without explanation, and offer comfort or congratulations for every milestone met.  There is a solidarity, if you will, and you can always imagine yourselves “us vs them” if you have to.

But now, we lose the “us.”

And there is still the “them.”

Sure.  I’m not being fair.  All the parents of typical kids aren’t the judgey assholes one runs across online, or even at the park.  Hell, the kids in the class Ben has been part-time mainstreamed to have been super loving and supportive of Ben–so much so that that general ed. teacher has never even seen Ben even close to his worst.  And that says a lot for the parents, right?

But he isn’t going to be mainstreamed at the school he’s currently attending.  Nope.  Back to the home school.  And when I say back, I really mean, in attendance for the first time.

And who’s to say I won’t cock punch the first parent who gives me the stink eye?


what’s that? Can’t? Never heard of it!

(or worse yet, bust into a full ugly cry?)

Because what makes this so stressful is that it kinda puts us back at square one.  And all the trepidation and uncertainty, and down right intestine-twisting FEAR that I felt right after the diagnosis–it’s back, blowing cigarette smoke right in my face.  She sits there, blowing her smoke and reminding me of the stories I’ve heard first hand of teachers refusing flat out to work with IEPs, supports getting cut due to budget constraints or administrative idiocy, and students–like my own son–falling by the wayside in favor of typical kids with vocal parents and a teacher with only so much energy to give.

Mainstreaming is the right decision.  My kid is practically reading at the 1st grade level already.  He knows how to get in line and sit for circle time and hell, today he demonstrated a math problem he made himself using graham crackers.  He’s eating up knowledge like an unattended plate full of chocolate covered peeps.  And while I have very little confidence in the team I’ve worked with so far, I KNOW they are not the enemy here.  Because there is no enemy.  Only that nicotine soaked bitch known as my fear.

So, once again, I have to kick her to the curb, and advocate and make sure he is placed in the best situation possible, where he can continue to blossom and grow.  I have to put aside my need for solidarity.  I have to put aside the things that made ME comfortable, and stare fear straight in the kisser and tell it to fuck off.

And all by next Friday.

Because the thing is?  He CAN climb that wall.  Without fear or hesitation.  And slide down the slide and do it again.  And I love him to pieces for that, and for reminding me that he can always do more than my fear would lead me to believe.

Categories: Autism, parenting, Snark | 45 Comments