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”.
“When you’re down and troubled and you need a helping hand
and nothing, whoa, nothing is going right.
Close your eyes and think of me and soon I will be thereto brighten up even your darkest nights…
you’ve got a friend.” – You’ve Got A Friend by James Taylor
July 19, 2010 at 6:44 am
I believe Someone gives us a “Hope”, for all purposes of our lives. Everything happens for a reason. And I believe that Someone is preparing you to be someone’s “Hope”. Thank you for your sharing it means so much:)
July 19, 2010 at 6:51 am
I too believe everything happens for a reason, that people come into our lives for a specific purpose, even if it takes years to discover what that purpose is. Thank you Robyn
July 19, 2010 at 1:05 pm
I’m so glad Hope stepped into your life. I’ve had several, with serious medical issues in my children. And I try to be a “Hope” to others traveling the same path.
July 19, 2010 at 1:20 pm
found your blog through MBC. Sounds like “Hope” is a fantastic friend. Hoping I can be a Hope to someone too.
July 19, 2010 at 1:49 pm
Love this story. There is nothing like someone who truly understands our feelings going parenting a child on the spectrum. I’m so glad you have Hope!
July 20, 2010 at 6:41 am
I’m so glad I had her too! And I’ve “met” many wonderful people online who have also given me hope. Thank you all for sharing your “Hope” stories too!
July 20, 2010 at 8:23 am
Hope sounds like an amazing, wonderful friend. Thank goodness you had someone like that in your life. My sister was kind of like my Hope. Her son has SPD, so she helped me a lot when we couldn’t figure out what was going on with Danny. ANd she came with me to his diagnosis when we found out he was on the spectrum. I don’t know if I could have done it alone.
July 20, 2010 at 7:48 pm
My son was diagnosed with ADHD almost 2 years ago, and his pre-school director/teacher was my Hope. I witnessed his uncontrollable behavior at school his first week and was confused and mortified. “Hope” called me in for a parent/teacher conference and I was sure she was going to kick him out. The first thing she said to me after I sat down was, “I wanted to call this meeting just to let you know – it will ALL be alright.”
She was there for me, not just from a professional perspective, but from experience. It made all the difference in the world. The following year, another parent came and I was able to be somewhat of a Hope to her. Now were are hope to each other.
Great blog, in more ways than one.
cj
July 21, 2010 at 9:48 am
This is a beautiful post about friendship, human kindness, and a truly jarring event in our life. Thanks for writing it – I will send over some friends who have kids with autism.
Swati
July 21, 2010 at 10:19 am
We could all use a little Hope in our lives! Your willingness to share about your struggles and your experiences is going to be so important to a lot of people. You will be their Hope!
July 21, 2010 at 8:30 pm
What a beautiful post and so very, very true. Whatever we are struggling with in life, we always need friends that have been there and can understand what we are going through enough to sit quietly and listen. I am very lucky to have a Hope in my life as well. You are a wonderful and inspiring writer. Thanks for this.
July 22, 2010 at 2:20 pm
Whatver we are going through with our children, it can feel like exhaling when someone asks after us. I’d say ‘Hope’ was lucky to have you too.
July 22, 2010 at 4:44 pm
I love “Hope.” I am going to try that approach when my A-dar goes off, “That sounds a lot like my son…” and let the parent know they are right to be concerned, but I’m not diagnosing their kid.
Thanks for visiting my blog!
April 1, 2011 at 8:34 am
[...] finally, my friend Hope*. Remember Hope? She was the one who was there for me from the beginning. The one who guided me and listened to [...]