This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Friday, July 20, 2012

The View From Recovery Land

This post has been in the works for quite a while.  I have anticipated writing it for so long, and there is just so much to say that it's hard to know where to begin.  For a long time, as Roo inched closer to being recovered from autism, I would tell people that recovery was a process...a big grey area, not a finish line.  Then, one week in February, things felt different and I realized that we had crossed a finish line.  He was there.  My whole body took a deep breath and I had the image of myself laying face down on the ground out of both relief and sheer exhaustion.  I announced that I would be on staycation for the rest of the year.

I had spent pretty much every moment, every bit of energy on solving this thing.  I had been fighting constantly trying to beat the clock.  So that day in February I took a walk around the neighborhood, and looked at people's gardens.  Because I could.  It was warm and the sun was out.  I saw people approaching on the sidewalk and for a moment I had the urge to share the amazing news.  MY CHILD HAS RECOVERED FROM AUTISM.  Not long before, I had been washing my hands in a public bathroom when a very elderly lady with a huge smile approached me and told me that her granddaughter had just given birth to quadruplets.  Her joy was beautiful to see, and I was happy for her blessing.  I realized in that moment on the sidewalk that my joy was not one that the world around me was ready to share.  It is too politically loaded and inconvenient. 

Recovery means many things, but it is not the end of the isolation.  We now pass for a "normal" family, whatever that is, but we are not.  And we never will be.  We have been to hell and back.  The "and back" part means that we don't really fit in in the autism community quite the way we did before.  It's an odd feeling to feel that we no longer fit in with the outcasts that autism parents are, and to mourn that.  I remember my last night at the autism parent support group that I had attended for several years, a place where I had finally felt so understood, but on that last night I knew I no longer belonged there.  My joys and sorrows were no longer understood there.  I felt so lonely when I joined the "autism club" so I was shocked at how much more lonely it felt to leave it.

If there is one thing I learned from the autism journey, it's how to strike out into the uncharted wilderness and find my own way without any trail or guidebook.  I would just do it again.  I did what any self-respecting autism mom would do, and started a support group, but this time for families of recovered kids.  There are many of us and the wilderness became less lonely.  We are a group who have worked harder than we ever thought possible, because the only thing harder than healing autism is not healing autism.  We know how lucky we are, we know that many families will never get here no matter what they do.  We have known the horror of watching our babies slip away, and been humbled by the joy of seeing them return.

Every day is an emotional rollercoaster.  I take nothing for granted, I still stop in my tracks when I hear Roo using pronouns correctly, asking "wh" questions, when he chooses to draw a picture or eat something new.  Every success no matter how small is a monumental victory and I relish it.  When he is playing with a friend, sometimes I just stand and listen.  Sometimes I find myself wondering if maybe the autism never happened at all.  Maybe it was all just a terrible dream.  I look at how wonderful things are in that moment and I can't imagine that they were ever so bad.  And then, just as quickly, a memory is triggered and I know how bad it was.  I can't breath or talk and I fight to not cry.  I know it was real and that there is a pain inside me that will always be with me, that time will never mend.  The days are filled with wonder and beauty but they are also minefields. 

Autism (and my ME/CFS, from which I am now also mostly recovered) means that we can't afford to keep our house.  Losing a house is almost a right of passage for autism families.  I suppose it's a fitting end to this journey.  Roo regressed within months of us moving into this house, so now it is time to move on.  It's time for us to focus on another kind of healing in which we go back out into the world and have adventures and fun just because we can.  As much as events in the day feel like an emotional minefield, our neighborhood is also one.  When I sit on the bench at our neighborhood park, I am taken back in time to that fall day when Roo's inconsolable toddler meltdown signaled the beginning of a long hard journey that he and I did NOT sign up for.  I am haunted by these memories and welcome the chance to move away and leave them behind.  It's a sad fact that I would rather forget most of his childhood up until now.  I also intend to make the most of what childhood he has left.  That will be the ultimate victory.