Saturday, April 4, 2009

On Our Corner of the Spectrum

This month, as we give extra attention to autism, I thought I'd write for those people who read this and wonder, "What is it like having a child with autism?"

FOR US, and I only speak for the rooster clan over here, where we have a son with high functioning autism and possibly ADHD, this is what it's like:

- We've never left newborn mode in some ways. Oh, our boy has grown, and he can feed himself, do some of the dressing and undressing tasks, and talk a mile a minute when he chooses. But, just as when we brought him home from the hospital, he has a sometimes strange sleep schedule, wears diapers, and cannot be out of our sight for more than a minute or two. This last fact makes us quite weary, and even if you think you can imagine it, it would be pretty hard to do unless you have a child on the spectrum too, or unless you spent 24 hours or more in a row here. We invite you to do just that; we'll be at a Holiday Inn! :-)

- Priorities shift. Educational priorities, financial priorities, scheduling priorities, personal priorities, social life, career plans, future plans... time... everything has a new slant, for us. Autism is NOT the focus of our lives, but, like our son, we never let it completely out of our sight. It's an added prism on the lense, for sure.

- Sometimes I feel like we found ourselves dealing with autism at a particularly odd time, a coming-of-age kind of awareness time of a sort. The media seems to be waking up to autism and the spectrum it encompasses, not just this month. I keep having startling brushes with the word lately. I go to throw a magazine on the recycling pile, and it falls and flips open to a story I had missed about autism. I turn on the DVR of Sesame Street and one beat before the too familiar music begins, I get the tail end of the autism commercial. It's there when I sneak a second of NPR before the kids insist on their cds; it's referenced in the parenting listserv to which I subscribe; it's the charity receiving funds from the store I shopped in today. GREAT that finally this issue, which I knew so little about before our diagnosis a year ago, finally gets important attention, which boosts support for families, education, funding, research, and more. But the attention comes with its costs, too. For one thing, I have to admit there are days I wish I could escape the word, which seems to want to take over my life at times. It's not denial I'm talking about, it's breathing room. It's balance. For another thing, all those things in the media everywhere? None of them sound like my kid. Sure, people reference the spectrum, but they tend to describe finite shades of that spectrum. Sometimes the stories are sensational, sometimes stereotypical, sometimes just narrow... I've read libraries full of stuff about autism in the last year, but only once in a while do the behaviors described feel like what I see at my house with my child. Finally, there's backlash. Certain lame comedians not worth naming use the hot topic to garner attention for themselves while exploiting vulnerable families, for instance by claiming our children don't have autism, they're just stupid. Lame, and decidedly not funny, but painful too.

- Awareness. I can't believe how little awareness I had about ALL THINGS special needs before my son's diagnosis. I am a teacher, 14 years and counting. I have a Master's Degree, I am well read, I pay attention. I knew little about autism, and less about sensory processing disorders, aphasia, apraxia, DS, CP... I knew nothing about IEPs, IHHS, Regional Centers... I have learned so much. And in learning, I have grown. The awareness is one of the things I'm grateful for, along with the relationships I've forged with people whose lives and careers are about helping those with special needs. If I could do things all over again, I might have chosen OT as a career path -- though, come on, we all know I'm not coordinated or patient enough.

- Defensiveness: For me, I feel the invisible shoulder pads and helmet I put on each day before venturing forth with my son. I know I'm too sensitive, and I'm likely to encounter many prickly situations throughout the day, situations where I feel compelled to repeatedly apologize, or thank profusely, or explain, or cringe. I told my husband I need a shirt that says THANK YOU on one side and I'M SO SORRY on the other so I don't lose my voice repeating myself all the time, and for those people who don't find that enough I can always use some universal sign language, if you know what I mean! But, again, I know my projections are often the problem in this scenario, and I have become less sensitive over time, as I adjust to our situaton and grow more comfortable with our family's place out in the land beyond our home...

- Finally, the writing... I've written things for as long as I've known how, starting a diary as soon as I could spell the word diary, and it's been for me everything from a release to a joy to a profession, but now writing saves my sanity. It is the ONE and ONLY thing that makes me feel better when I get the autism blues. Oh, if you are thinking that sounds sad, and wonder don't my friends and family make me feel better, then maybe I need to explain the autism blues. For me, the blues come when I feel like autism gobbles up our lives and leaves me scared, lonely, afraid, desperate, lost, isolated. Then, I write. That helps me find my way back to my friends and family, helps me reconnect with my priorities... and, the best bonus in the world, it allows me to connect with the blogosphere, where people I know and people I've come to know offer me support, love, and ear, wisdom, reminders, information, love. This blog is the best medicine for what ails me. It is the ONLY thing that helps me sometimes... the writing, the connecting, the reading, the writing -- it always comes back to the writing. The writing gets me through the tough spots. The writing is something either autism gives me, or something I give myself, or a gift I rediscover because of autism... but whatever, it is the good thing, the salvation, the life boat. It's the way I breathe again, the way I release the toxins, uncurl my fists to make some room for hope.

And that, my friends, is what it is like for ME, and only me, as I raise a little rooster who, among many other things, has autism.


redheadmomma said...

I'm so glad you write. :)

Niksmom said...

This is lovely, all of it. Thank you for shining the light on your little corner of the spectrum; parts of it look and sound so familiar and yet they don't. I imagine it's the same for you when you read about our corner. And yet...

We're strongly connected to one another through our understanding of the struggles, our sharing the joys of successes —of progress made and milestones reached— and our intense desire to have the rest of the world understand what it is like and to cut us some slack.

Sending hugs and sunshine from my corner to yours. xo

pixiemama said...

You give voice to it all - and I love, love, love you.

xo, friend.