Tuesday, 12 November 2013

Guardian Angels, Warrior Moms

Eric and I at Cherry Beach, Toronto

Recently I dropped Eric off at a Saturday Social Skills program for adults with autism run by Kerry's Place Autism Services, an exceptional organization in Toronto. We were the first to arrive.  Eric, as usual, was having a difficult time separating from me. My granddaughter was with us, so she and Eric ran around the coach house that the program is housed in. She was having a ball, and Eric knew I couldn't leave without Sammy, so he was fairly calm while exploring. I settled in, knowing it would be a good 10 minutes before I'd be able to leave. I was chatting with program staff when in walked the next participant- whom I recognized right away. A young man probably about 10 years older than Eric. He lives on my street with his mother, who walked in immediately behind him. The young man settled fairly quickly so I was able to talk to the mom. Something I'd been wanting to do for nearly 2 decades. You see, I could never forget her.  She had had a profound impact on me, and made a huge difference for my son. The interaction had been brief, and I was sure she wouldn't recall it, or us. But I needed to thank her. So while Sammy and Eric explored the house I told her and the staff the story of that day, nearly 20 years ago.

From the time Eric was just a tiny very new baby, I knew something was not quite right. I had a wonderful family doctor who set up appointment after appointment until we found the doctor who was able to pinpoint the problem. On December 20, 1996 Eric was diagnosed at Surrey Place Centre with Autism. I was in shock. Autism was something people did not know about back then. I vaguely remember wandering home with Eric strapped in the stroller. Well more to the point, I remember leaving the doctors office, and I remember arriving home. The 2 hours in between were a blur. I spent the ensuing months researching autism, therapies, and on and on. But there were no clear guidelines back then. Nor were there parent groups, or facebook, or funding, or even a concensus on WHAT autism was. I ran into doctors in esteemed hospitals who still at that time believed Autism was caused by a mother not loving her child enough, refrigerator mom syndrome. I was floundering, and sinking. I knew of NO ONE who had autism, did not know where to go to help my son, let alone what help he needed, and there seemed to be no way to find these things out. 

I often took walks with Eric, to clear my head. To think. Eric was always quite happy in the stroller. He felt most at ease, and was less behavioural, when he was IN something. The stroller, the crib, the car seat. So it was good for both of us. Usually I would drop my eldest son Chris off for kindergarten and then wander around the neighbourhood until it was time to head back to the school.

It was on one of these outings that I met Gabriel and his Mom.

I was in rough shape. Eric was sleeping at most an hour a night. He was a wanderer, an escape artist. Just 3 years old but the task of ensuring his safety was arduous, all-encompassing. And exhausting. On a daily basis strangers would verbally attack us, insult us, and remember, by us I mean a mom and her 3 year old child. Society isolated us daily, and we had nowhere to turn. I hadn't even realized it, but this particular day, as I was walking with Eric, I was crying. And Eric was making his noises. I liked to call it singing. But in truth it was loud, high-pitched yet guttural noises. When people would stare- as they always did- I'd pipe up ''he's in a good mood and singing!'', usually then they'd roll their eyes, flare a nostril in contempt, but stop staring. But sometimes I really just had to tune out, because the contempt and stares were just too painful to endure. So this time, I was tuned out, so tuned out I didn't know I was crying. I didn't even know someone else was on the sidewalk until I felt a gentle touch on my arm. 

And she then said it. 
One sentence.
Not 'Hello'. Not 'Are you ok?'. She said the one sentence I had without knowing had needed to hear more than anything on earth.

'My son has autism too'


And that was it. The flood gate that was (JUST BARELY) keeping all my grief and sorrow and fear and frustration contained opened. Opened WIDE. I sobbed. That kind of sobbing where your nose is running and you're coughing and gasping and a complete utter disgusting mess. She held me, and as we were right in front of her home, she asked me to come in for tea. 

Gabriel was at school, so I didn't meet him then, in fact I wouldn't meet him until that day at Kerrys Place. As I sipped my tea, Gabriel's mom engaged Eric, giving me time to compose, and just breathe. A luxury I usually did not have. Then she got out one of those big yellow legal pads and her address book and told me what to do. She handed me her phone to call Geneva Centre for Autism and I booked an intake session for later that week. Geneva Centre has since been the single most important connection I have ever made in regards to Eric. She wrote down therapy styles to research. Let me know what had, and more importantly hadn't worked with her son. Time is precious for autistic children, wasting it on fad therapies is NOT a good thing. She told me stories of her son that made me feel so much better. It was the first time I realized the issues my son had were because of his autism, not somehow because I was a bad mother. She gave me strength, and motivation and most important of all, she gave me hope. I left her home with reams of yellow legal paper stuffed into Eric's diaper bag. I'd reference those very papers for years to come.

I didn't see them again for many years, and then only in passing. I ended up moving onto that very same street after my divorce. But we are on opposite ends of the street and rarely pass each others homes. I knew she wouldn't know me from Adam so I didn't feel comfortable just going up and knocking on her door.

There is a long park- the entire length of the street, opposite us. One day, not long after we had moved in, my youngest son, 6 years younger than Eric, had come in from playing outside and told me he made a new friend. A man down the street who was just like Eric. Gabriel. Apparently, Mark would pretend to be a monster and chase Gabriel around, who would laugh and laugh and laugh. Mark was a popular kid. Yet he'd leave his friends to go 'play' with an autistic man, without a second thought. This always made me proud. The fact that long before Mark was even born, this very same man and his mom had been so important to us made it feel like fate. And warmed my heart to no end.

Still, over the years, I myself had never bumped into them. 

Until this day at Kerrys Place.

When I finished telling Mom the story, I noticed that the staff had huge smiles and were crying. And so was I.

The mom and I chatted some more. She asked how Eric was doing. Eric has been home now for a while. His anxiety so strong that he has even been hospitalized. We are now navigating the practically non-existant world of adult services for people with autism. Out popped a notepad and pen, and Mom wrote down the names of some good day programs , including the one Gabriel goes to. 

Eric is on the wait list for day programs. 

That wait list is 2-4 years long, and growing. 

Gabriel's program, because they are independent and not in the directories, has openings. 
And they provide transportation. And they take government funding. 

It seems like whenever Eric and I need an angel, Gabriel and his Mom are there.

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