Thursday, November 12, 2015

It's ok not to find the calm

I recently read an essay about how to find your calm as an autism mom.  The author writes she has indeed found her calm; she is definitely a better woman than I.  With Andrew now 16 and adulthood looming, I’m back to the unsettling semi-panic mode that was pervasive throughout the first years of therapies and schooling post-diagnosis.

I can do calm.  I was truly calm and totally relieved the day the diagnosis was delivered.  It meant there was a title for what was going on with my boy, and that title could help him get intensive services through Early Intervention.  I was alone, 7 months pregnant, in a tiny exam room at Mass General when a kindly Indian doctor told me Andrew met the criteria for a pervasive developmental disorder.  No tissues needed.  I asked him for a letter that day so I could start working with Andrew’s EI team to advocate for increased services.  I was okay, for the diagnosis had been suspected for 6 months.  I didn’t “blame” a vaccine.

The craziness of those first few years, including speech and OT every Monday, full day special ed preschool, social skills speech group with his sister and EI therapist who also had a private practice, being supported by our local autism support center, and other EI moms going through the same stuff.  The days were long, schedules busy, but we had a warm, caring, supportive group of friends and a church which held us close. 

We were in a groove.  Granted, it was an autism-fueled one, but we found our “new norm” and Andrew was learning.  I was learning how to juggle and how to communicate with him.

There was a turning point where the stress returned.  When Andrew’s two younger sisters, one 13 months younger who was a preemie at that, started to talk and do things he couldn’t, there were more pity parties in my head that I now regret.  While on the outside I understood autism was a neurological disorder that could be treated, but not cured, deep in my heart I didn’t grasp that the older he got, the less abled he was than his siblings or peers.  This also coincides with the time his tantrums (mostly because he couldn’t communicate his wants and needs) at home and in the community went through the roof.   Then there was going to our favorite park with two huge slides and him pulling down his pants and pull-up and pooping on the sand.  Good times.

When he was settled into a good school program with a great aide, there was more calm.  The kindergarten teacher in gen ed who had him for two years may have been new to autism, but she had the heart of an angel and was fabulous with him.  One year of kindergarten, he had a quality teaching team in his small classroom with very similar kids learning alongside him.

At 16, my Boy is an amazing kid who has grown so much and brings his mama so much JOY.  Yet, he is isolated.  He has clear wants for his future (being a meteorologist) which I don’t see a path to fulfilling.  Instead, he gets to collect recycling and might be able to shred paper or bag groceries. I’m supposed to be ok with that.  He will live with me until if and when we partner with other families and create supported housing.  He might live with me till I die.  Then I hope one of his sisters will at minimum take over guardianship and make sure he lives life in a way that makes him happy and as successful as he can be.

There are lots of moments of calm interspersed in our lives.  Andrew loves his stuffed bears and I finally decided that was absolutely ok.  He loves music, dancing, seeing concerts, and walking around our local pond.  He’s in a school program which is supposed to be the best in the state for transition.  Some of the other kids like him and he them.  There are beginnings of friendships with same-aged peers. 

That it the calm  a mother feels.  Seeing the moments that her child with autism is happy in his own skin.  Yet, I haven’t found that overwhelming, permanent calm.  Humanity dictates that when dealing with an unpredictable disorder (and my kid is kind of unique even within the spectrum), you become a survivor.  I don’t want to be a warrior and be angry- I’d love to be calm all the time.  In reality, I hold onto faith that my son will be a happy young adult and even happier adult, despite the bumps on the road.

Calm? No.  Accepting? Yes.  Confused? Often.  Loving? ALWAYS.

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