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.
