You've Got a Friend
When I became a parent for the first time, I sought out many different mothers who had been there before, learning all I could from them in an attempt to become a better mother myself.
When I became a parent of a special needs child, I only sought out one.
Let me tell you about this friend of mine.
And even though I have chosen to share our story publicly, she has not. So for the purposes of this post, I will call her “Hope”.
I met Hope on the first day of preschool for my oldest son Gerry. Having just moved to town a month before school started, we didn’t know anyone at all. As we waited outside the school doors for the teacher to arrive, Gerry hid behind my leg and I wrestled with Howie, who was then 6 months old. Hope’s son came right up and introduced himself to us. Hope, slightly embarrassed by her son’s forwardness, came up to first apologize and then say hello herself. She was so kind and welcoming that day that I tried to seek her out each afternoon from then on. We discovered that we had a lot in common and quickly became friends. Gerry had his first solo playdate at her house that fall.
I can’t remember the exact moment when she confided in me that her older son was on the autism spectrum. However, I clearly remember my response: “oh, really?” That was all I said. At the time I really had no idea what she was talking about. Autism was a foreign word to me – conjuring up images of “Rain Man” and rumors of what I had heard about Albert Einstein. It didn’t really compute with me. I had seen her son when we were over for those playdates. He could talk. He could read and play and communicate. There were times when she had pulled him aside for breaks, and had told me it was because he was on a strict behavior plan. I thought she was just describing her parenting style to me.
I didn’t really think of it much after that day. We continued to get together for playdates, although they became harder to plan when the kids ended up in different kindergarten and first grade classes. Hope and I would also try to get together without the kids so we could have some time to talk without interruption.
It’s around this time that I started to notice things going on with my own son Howie’s behavior. First it was his food aversions – his reluctance to eat anything with any sort of texture or cold temperature. I remember telling Hope about it, sharing my frustrations and confusion with her. She sat, listened, gave me some suggestions and said “That sounds a lot like my son when he was Howie’s age”.
Then at age two it was Howie’s behavior. His inability to process anything we told him. His strange lack of fear of running into the street and the fact that he couldn’t get it when we told him how dangerous it was. The way he just laughed when we’d discipline him. We had this feeling of complete incompetence when it came to parenting, because nothing we did seem to work. I shared this all with Hope over various phone calls and lunch dates. Each time she’d sit, listen, offer suggestions and say “That sounds a lot like my son when he was Howie’s age”.
It was these last conversations that helped me see what I had been missing with Howie. Clearly something was different about him in the same way that Hope’s son was different too. When our school system evaluated Howie and deemed him ineligible for services, it was Hope that I turned to for advice. She told me to trust my gut, seek out an outside opinion and get on every and any wait list to see a developmental pediatrician. And she reminded me that it was nothing to be ashamed of, that whatever we learned could only help us and help Howie.
Hope was the first person I called when we finally got Howie’s PDD-NOS diagnosis. I told her what the doctor had said, that she thought Howie was on the spectrum but on the “mild, high-functioning” end. After several minutes of me relaying the laundry list of services and supports that the doctor suggested, I was finally quiet. Hope’s only question to me was “So, how are you feeling?”
That’s the kind of person she is. Hope wasn’t curious about the social speech classes, or the ABA services, or the one-on-one aide that the doctor recommended because she knew all about those things. She was more concerned about how I was taking this all in, and how I felt about the diagnosis.
“Relief”, I told her. “I’m really relieved. Now we can move on and get the help we need.”
And really, that’s how I feel about Hope. Relief. Relief that I met her when I did so that we could become friends before I needed her guidance and support. Relief that she was smart enough and caring enough to push me in the right direction to get the diagnosis we needed. And relief that I had someone in my life who knew exactly what I was going through.
I know that I’m lucky to have had a friend like this. Without her, I’m sure I’d still be struggling with the challenges of figuring out what autism spectrum disorder means. I know there are many mothers and fathers out there going it alone without anyone they can talk to. Every parent deserves to have someone they can turn to who will sit, listen, offer suggestions and say “that sounds just like my son”. Every parent deserves a “Hope”.
Alysia Krasnow Butler is a stay-at-home mom with three boys ages 8, 4 and 2. Her middle son was diagnosed with autism spectrum disorder in December 2009 at age 3 1/2, and she writes about that and other adventures at http://trydefyinggravity.wordpress.com. Prior to staying home with her boys, Alysia was a state representative in the Vermont State Legislature from 1998-2000, and later worked as an SAT instructor and academic manager for a leading test preparation company in Massachusetts.