Perspectives

Something wonderful happened this weekend.  We went to church as usual, and when it was time to sing the kids' song which involves running around the room, James leaned over and whispered "Help me." He wanted to do the dance moves and join all the other kids, but he also hates to bump into people.  So we stood to the side and did the motions, and when the time came to run, he climbed on my back and off we went.  I don't think he's ever done this.  There was a game he wanted to play, and so I gave the condition that I wanted him to participate in his lesson and let me participate in the adult time, and then we could play after church.  His teacher reported that he did, in fact, join in with the lesson.  I got to have some adult conversation.  Afterwards, we played the game.  As we left, I felt victorious.  This is progress.

And sometimes I think we spend all this time sharing such victory stories, talking about how far our kids have come and what they are now capable of.  It's exciting.  It makes all the therapies and attention and work seem worthwhile.  But there's another side to all of this.  And I consider it just as big a victory to realize how much I have shifted my own behavior and expectations to make our home welcoming and comfortable for James.  Yes, my son needs to learn how to get around and get along in this confusing world (to act "normal"), but it's also important for our family to act autistic.

I read a fascinating book a while back, Far from the Tree by Andrew Solomon, about how families cope with the addition of a child with a disability.  The book opens with a chapter on Deaf people; it is well-researched and thought-provoking, and it introduces two types of parents.  These two categories play out in each subsequent chapter, whether the parents are dealing with a deaf child, an autistic child, a schizophrenic child, a dwarf child.  One type could be called the Deniers.  It shocked me to read, but some parents, when presented with a child who cannot hear, simply ignore it.  They make no accommodations, no effort to learn sign language, and either the child suffers horribly or he is shipped off to a special school for the hearing-impaired.  Yikes.  Let's call the other type of parent the Embracers.  Embracer parents learn all they can about their child's diagnosis.  Many of the folks interviewed in the book started schools or community groups, moved across the country and changed careers, all for the purpose of helping their child have the best life possible, making opportunities where none existed before.  For the parents of a deaf child, embracing the diagnosis usually involved learning sign language.  For those whose children were diagnosed with dwarfism, it means traveling each year to the Little People of America National Conference, where their child can socialize, get medical consultations, and celebrate their short stature.

What does "embracing the diagnosis" mean for parents of autistic children?  There is no common communication style or national convention that gathers others like our kids.  We have a plethora of professionals who can offer guidance and advice, provide services and create plans.  We have our instincts to love and protect our children, and quite possibly our own sensory issues or social anxieties that look a lot like struggles our kids are having.  But most importantly, we have vital perspective of autistic adults.  Thanks to the internet and blogs and social networking, adults living on the spectrum have found a way to voice their thoughts and experiences.  They offer us a window:  this is what it feels like in an autistic brain, this is what it looks like to go through life and live in a world that celebrates neurotypical abilities.  And yet, so often we continue to ignore them.  (Myself included...as a mom, I prefer to read blogs that are written by other moms.)

So this is the challenge, which is meant to celebrate April as Autism Awareness Month, but for me, should just be a habit.  Read blogs written by individuals on the autism spectrum.  Listen.  Validate.  And most likely gain further illumination about what it feels like to be my son.  Because if he has trouble communicating, then I should assume at least half the blame.  Relationships are supposed to go both ways, so if I want to hear him talk, I need to create a space and time for him to do that.  I've learned that he doesn't want a microphone or a stage like so many others.  He wants me to climb the ladder and sit in his bed with a blanket over both our heads, and be still.  It's not easy for me, the one who loves to talk and write and share ideas, but it's necessary.  And I'm offering the challenge to each of you as well.  Let's open our eyes and ears and close our mouths and read what these people have to share.  Let's learn something new and appreciate a different perspective.  Let's share the spotlight with the true experts.

I'm starting here:
I am already familiar with the blogs written by John Elder Robison and Emma/Lemon Peel.  I've gotten some great advice reading Bec at Snagglebox and M Kelter.  I also regularly listen to the Loud Mute Radio podcast. 
This month I'll also be reading Amy Sequenzia, Autistic Hoya,  Just Stimming, and Unstrange Mind. Diary of a Mom lists many more, and I'm sure each of these blogs can direct me to other autistic writings as I go.
The challenge is to read at least 10 entries per writer.  My hope is to find more insight into the world of autism, and maybe a new favorite blog.  Also, I think it's time we start trafficking websites whose content is written from a first-person perspective.  It feels weird to write a blog telling you to read someone else's work, to acknowledge that my my point of view is limited and probably not very helpful.