“Are you Ben?” I say to my 28 month old son this afternoon, like all other afternoons.

With a pat on his chest with an open hand he replies “Ma!”  Not entirely clear on where he came up with that name for himself, it has stuck for the last month.  And I delight in it as I think it’s very funny and clever but also because it shows me that he finally understands the concept of himself as a separate being from me in this world.  

This is “Ma”.  (And I’m “Mama”).  He was diagnosed with Autism on April 12^th, 2012.  He was evaluated in Feb/March and I was told it was likely.  But you hope.  Secretly you hope.  You want to brush away all the real obstacles that face your son every day from sensory overload to self-injuring behavior (SIB).  My beautiful dark twisted nightmare is more real than of the imaginary realm.  He’s made incredible strides in the last 10 months with early intervention therapies from speech, OT, ABA and cognitive preschool.  In Jan. 2012 he had regressed to 4 words, his SIB’s were at an all-time high, meltdowns happened throughout the day and I didn’t know what was wrong.  I had an idea.  I had asked his pediatrician many times and was told “no, all boys are delayed” but after more than one day and night of violent meltdowns and hurting himself, I decided I needed to have him evaluated sooner than later.  He’s been receiving amazing therapy at The Boyer Clinic and Lakeside Center For Autism.  I’ve joined an incredible support group for parents of children with Autism in ALLY from the Seattle Children’s Autism Center.  Ben and I have an incredible nanny to care for him and shuttle him from therapy to therapy while I work full time.  Julie keeps our world glued together!  We’ve made big strides from the beginning of the year to today.  Ben is up to around 55-60 words, while regularly saying 20+ along with sign language.  Meltdowns still happen most days.  Attention spans are still under a minute at a time unless he becomes fascinated with a thread on my clothes or a central air vent in the house.  He notices every little detail.  He makes solid assessments of those who cross our path and he’s always been right about the person when he likes or dislikes someone.  I trust his judgment.  He’s had incredible circumstances to overcome since his birth from multiple surgeries to burn accidents in foreign countries to hours of therapy a week that no other two year old has to endure.  I am amazed at my son every day.  

Ben and I struggle together, we win together, we relax together and we learn together.  Life was not supposed to head down this path for us and who knows why it did, but it puts us in a slightly different world than the rest of the neuro-typical world.  I’m learning a foreign language every day about Autism alongside my son.  I have become a voracious reader and researcher about Autism and everything around it from therapies to cures to legal concerns.  Ben lives it.  I can never know exactly how his world sounds or feels or what his daily experience is like.  He’ll never know mine.  That one is tough.

At the end of the day, there is a voice inside me that is pushing to be heard.  To advocate for my son and myself.  To help the rest of the world be more compassionate and less judgmental.  As with any Spectrum parent, we all want these things for our children because we fear how the world will receive them once they start school, enter the social dynamics of the world or look for work.  All spectrum parents ultimate fear resides around if/how our child will be cared for as an adult.  We fear dying and what might become of these amazingly different humans once our care giving is no more.  We all want to change the world for them now so they don’t have to struggle later.  We all want to know that we’ve given them all the hope we can for the best life possible through the opportunities of therapies/medications/support.  I want him to live until he’s 150 and enjoy most of those days independently if possible as he grows up.  I also want to know that my life will have more to it from this point forward even with all the challenges we face around Autism. 

“I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we got a lot at stake”
- Jason Mraz