God is the madwoman in the attic.
I'm camped out on the threshold with my journal, camera, and plenty of snacks.

Sunday, November 13, 2011

my education as Autism Mom

It's been about a year since Little N received a formal diagnosis of Autism Spectrum Disorder and it's taken me almost that entire year to understand and accept the diagnosis - and start to grasp what it means for Little N's future and for our family.  I compiled a reading list fairly early on but have been slow in actually reading the books.  Slower still to let their contents mull and make connections in my mind.

My current book is Unstrange Minds.  I'm halfway through chapter 4 and so far, these three thoughts are staying with me:

1) Little N has straight-up, 100%, classic Autism.  Not Autism-lite.  Not a wrong diagnosis such that he really is a typical kid after all.  It's Autism.

Here are some excerpts from the text that confirm this for me:
"None of them could consistently use pronouns correctly.  A child might ask for milk by saying, 'Do you want milk?' because that is exactly what he heard his mother say."  p. 48 
That's exactly how Little N communicates his needs.
"They hated changes in routine, in the arrangement of furniture, or even the path taken from one place to another.  Many would eat only a small number of foods, refusing to try new foods or even to accept the same foods prepared in different ways.  There were also sensory problems.  Most of the children were highly sensitive to particular noises, such as running water or the sound of a toilet flushing." p. 49
Again, this is Little N.
"... the core features of autism - a triad of impairments in social interaction, communication, and imagination (with repetitive interests and activities)...." p. 61
Little N, short and sweet.

2) We are so lucky and fortunate to have this diagnosis today rather than any other time in history.  If Little N was growing up 60 years ago he'd be facing a diagnosis of schizophrenia and institutionalization.  As recently as 20 years ago the school system wouldn't have known what to label him or how to help him.  The prevailing assumption was mental retardation.

Today the school system is where Little N is receiving special preparation in a developmental preschool for his future academic study.  He also receives speech and occupational therapy as well as support developing social skills.  Additionally, the school system provides a special program for children with Autism, which Little N attends twice a week in a class with just 3 other children working with 1 teacher and 2 aides.

When we received the diagnosis last fall, I hoped (maybe expected) that there would be someone like a case worker or our pediatrician to hold our hand.  I strongly wanted someone to hand us a map with a clear course and connections to resources and support people.  But that didn't happen.  It's very much a path and resources that you have to locate and identify and meet and participate with all on your own.  I'm overwhelmed at times.

When I read about the history of Autism I am amazed and grateful at how much and how quickly things have changed.  Right now Little N is getting all his instruction and additional support at the public school 5 blocks from our home.  That's amazing and wonderful and such a gift for him and for our family.

3) The book's author, Roy Richard Grinker, waited until his daughter was in middle school before he started writing the book.  I don't want to wait.  I'm striving for a balance of immediately capturing our lived experience with Autism and presenting a well-considered mull that only time will tell (and later retell a little bit differently again).  I want to convey the flux of experiences, new understanding and ideas, the mixed emotions.  I want to share the work and the celebrations along the way.  I want to assemble some meaning, maybe not conclusions but at least perspective, grown from living as an Autism family.

Plus, I'm a text person.  Putting an experience into my own words helps me to acknowledge what is happening and to make sense of it.  Writing with the knowledge that folks are reading adds another layer of accountability for me.   It's an additional push to keep me in motion taking the next steps for Little N and for our family; taking the next steps that deepen and broaden my own understanding of Autism.

As my understanding develops, writing is also a way to share with others, both folks that care about Little N and folks navigating their own experience with Autism, what it can be like and maybe provide some resonance, some company for the journey.  Ultimately, I hope that our story will be positive and resourceful and support others in doing the same.  And loving! - because our little family does have so much love.


Melinda said...

Been thinking of you...I have a student in a composition class who wrote about toy selection for parents of children on the Autism spectrum. If I get permission from her, I'll send it your way, if you like. Thanks for sharing your story.


Alicia said...

I am so glad you are writing and sharing this with the world. It is a gift.

Di said...

Welcome to the world of autism! :)
It helps so much to write about it and know that there are other mums out there who share the same journey!
Best wishes