Saturday, April 05, 2008

On becoming aware

I've been reading on the blogs that it's Autism Awareness Month.

Actually, that's a lie. I haven't done much "reading" at all. I've learned that it's Autism Awareness Month by reading blog titles and scanning blog copy, because honestly, I haven't felt like I could handle any more autism awareness lately. Around here, it's felt like autism awareness year. And the truth is that this year, for the first time, I have often felt painfully aware of autism. It's been a year of struggle, of challenge, of two steps forward/one step back, of one step forward/two steps back. A year of stumbles, of trials, of risks, of unknowing. So, in the same way that last summer felt like the right time for inactivism, this month has felt like the right time for unawareness. And so, no, I haven't watched Autism: The Musical. I didn't see any of what was on CNN. I haven't taped, I haven't read, I haven't looked, I haven't heard.

Despite that, though, I accepted an invitation to be a guest speaker in a Child Psychology class at the college this week. The professor asked me to speak a little about parenting a child with special needs, and then to take questions from the class. I decided not to do much preparation. I am, at my core, an educator, and I decided that if these students were really going to learn about my parenting experience, then they needed to have the unedited story - not pre-packaged, not beautifully wrapped, just open, honest Q & A. I had a few notes with me, but mostly, I just brought along my courage.

I arrived at the classroom after most of the students were there, and as they settled in I looked around for familiar faces. There were a few students I've taught before, a few I knew from other arenas of my work at the college, and a lot whose faces looked familiar, but whose names I didn't know. There wasn't anyone with whom I'd ever had a conversation about Bud.

I started the presentation with an invitation: "I want this to be helpful to you," I said. "I want to answer the questions you have, whatever they are. So, I want you to know this: I am not easily offended. I understand that some of your questions might touch on sensitive areas and you might be worried about phrasing them the wrong way. Please, ask the questions you have with the words you can think of, and trust me that it will be okay."

And they did.

I gave a fairly brief introduction, walked them through Bud's early development and diagnosis, his education and intervention, and the current state of the state. Then I opened the floor to questions, and hands flew up all around the room: What were my thoughts about inclusion? Had I ever looked into the gluten-free diet? Could I tell them more about Bud's anxiety related to thunderstorms and what those episodes were like? Did his anxiety spill over into any other areas? What were my hopes and fears for Bud's future? Had I planned on having other children, was Bud's autism a deciding factor in not having them, and did I have any sadness or regret related to that? What has been the most difficult part of Bud's school experience? Did Bud's use of echolalia make me nervous about exposing him to age-appropriate media? What did I do to try to get Bud engaged with peers? How did I make decisions about medication? How did I deal with Bud's acute sleeplessness? How did I maintain my sanity? And more, more, more.

I gave it to them straight and unedited, completely unsure about how they'd react. As I talked, I watched their faces - interested, engaged, encouraging me to give them more, to expand, to dig deeper. I watched for looks of horror when I described the hard times, but I saw none. I saw some flashes of sympathy. I saw some looks of recognition. And mostly, I saw the expressions on their faces soften and change, as one by one, person by person, they listened to my stories and fell in love with my son. None of it was white-washed; they got the unadulterated truth. But they were able to hear it all and zero in on the part that mattered: the part that told them that in parenting Bud, I get more than I give; the part that told them how lucky I am to be this child's mom.

When I left the classroom, I was positively buoyant. When I'm slogging through the day-to-day, especially when I'm slogging through the hard day-to-day, it can be easy to lose perspective. I am always aware of the good that's there, of course, but I start to lose sight of the ratio - I can't quite tell if in the bigger picture, the bad has somehow started outweighing the good. I start losing track of which things are universal and which are situational, which are the norm and which the exception, which the foundation and which the one-off. But somehow, through 75 minutes with a room full of eighteen to twenty-two-year-olds, the clarity was restored and I exited the classroom with something I didn't have when I entered: awareness.

Autism awareness? Maybe. Self awareness, for sure. Life awareness, I think. Whatever it is, it's good. It's making me take deeper breaths. It's making me believe that spring is actually coming - metaphorically and literally. I'm still not ready to break out the next round of autism memoirs or check to see if TiVo has been taping any good documentaries. I'll still be skimming the "Autism Awareness Month" posts for a while. But I've rounded a corner. I've turned a page. And I think good things are coming.

Stay tuned.


Anonymous said...

aw, MOM-NOS, this is SO wonderful! yay for that feeling! yay for spring! yay for you! and bud!

that's it, isn't it? life awareness. people awareness. the only thing i can say is that with all the autism awareness talk and writing, whether one reads it all or none at all or in between, the process will hopefully stir our OWN awareness of whatever it is that makes us feel this way: that we are taking the deeper breaths.

kristina said...

I wish I could have been there! A couple of students in my classes told me they had seen "Autism: The Musical" and some of the CNN coverage. Charlie and autism come up from time to time and they always look a little rapt and intrigued---certainly interested---when I talk about him.

Just plain aware awareness.

Daisy said...

Good for you! Taking on an honest discussion can be scary. Fortunately, it sounds like the "kids" were sincerely interested and understanding.

Anonymous said...

you get more than you give. i wish more people realized that.

Bea said...

How I wish I could have had a seat in that classroom.

Niksmom said...

Well, in your own way you *did* foster "autism awareness." And it sounds like, in this case, you gave as much as you got...just different. :-)

Sending you a hug and a wish that your snow fort melts sooner rather than later and spring finds its way to you and Bud. xoxo

Anonymous said...

Thanks for sharing this. I had tears in my eyes by the time I finished. Can't really tell you why because I don't know for sure. It was real and inspiring...just the way I like it. Thanks!
(Mom to 4yr old with Autism)

Anonymous said...

it sounds like you've done your part to create an honest awareness. that is something we need more of because most people only see the really really bad and the really good but never the inbetween truth that we all live with.

KAL said...

This made me cry. So wonderful to have others see how beautiful your boy is. I wish I had been in that class.

kristi said...

Good for you. I am still into absorbing all I can because Autism is still something I am learning more about everyday. I may get to the point where I don't feel that way. But it still sounds like you are raising awareness. Kudos!

Jeni said...

The comments of others here to the effect that you DID do autism awareness via the lecture and now, sharing that here, were exactly what I was thinking as I read your post. I think everytime we venture forth to tell any aspect about autism -whether it be technical things or just little stories about things our children do, we are helping more and more people to learn about this disorder.
My daughter, son-in-law, his older daughter and their two little ones, both autistic, and I all live together and I frequently blog about my grandkids, especially the four-year-old, just to let people hear a lot of the fun side -and there is that too -of living with autistic children, along with some of the hassles, the downside of the meltdowns and such.

Poopsie said...

This was such a wonderful post to read. Thank you for your open and honest story.
The part that struck me the deepest was this, 'the part that told them that in parenting Bud, I get more than I give; the part that told them how lucky I am to be this child's mom.'

My duaghter does not have Autism, but she has sensory processing diorder. My sons, all but grown now, have been mis-diagnosed all their lives- ADHD, Dyspraxia. I believe they also have sensory issues. It has never been easy to parent, and there are days when all I want is to give up and do nothing. But, it doesn't serve anyone a dose of good, including myself. I realize each day that my children are my joy, even when I feel they will drive me crazy. :)

Many blessings to you. You have likely done something that CNN cannot, touch the lives of those students in a personal way. As an educator, you may not see the evidence today, but someday it will happen.

Most important though, you have found a new awareness for yourself. You need not be afriad of telling your story, it is real, and it is what others need to hear.

Anonymous said...

I know exactly how you feel about being with autism so much that you couldn't read or watch anything else on autism. I have months of ebb and flow. Sometimes I'm in an ok place to read up on it, and other times I just can't have anymore info. in my face about it.

I too wish to have been a student in your class.

Anonymous said...

Thank you for that! I'm crying too. It is so good to hear your voice.

Anonymous said...

I'm pretty much impressed by you!

Drama Mama said...

MOM, you kill me.

I wish I could have been there. Thank you for bringing the intimacy and meaning back to Awareness for me. I was started to get a little dysregulated by the media blitz.

Anonymous said...

Thank you for this post. I could so relate to it. Just dipping into your blog and some others for the first time in quite awhile. I, too, have been not-reading, not-listening, having plenty of "awareness" in my life of late. Your post, so ful of love and honesty, has reminded me of the kind of awareness I really do have and need to share...the awareness of an angel living in my home who gives ever so much more than she gets. Thank you. Em's Mom

Bonnie said...

Wow, you took so many words right out of my mouth concerning Autism Awareness! I would have given anything to hear you answers to those questions, you are so right on! I am glad I found your blog!