Staying Friends Through Autism
My best friend and I had so much in common -- until my son was diagnosed.
Ashleigh and I met in eighth grade. We survived high school together, stayed in touch through college, and eventually ended up in our hometown, married, with careers, and pregnant at exactly the same time. We binged on Dairy Queen after our daily walk, complained to each other about our swollen feet and huge belly, and waited impatiently for D-day as we dreamed and schemed about all that our children would do together.
In April 2008, Ashleigh gave birth to her son Loki, and four days later, I had Liam. They were perfect little boys and we were feeling radiant as new moms. But as our children got older, I noticed differences between them. Ashleigh's son slept peacefully, but mine never settled into a sleep routine. Loki was happy to stay with other people, while Liam screeched for hours if I left him with anyone.
At the park, Loki ran, slid, babbled, and listened to Ashleigh. I found myself hovering over Liam, worried because he didn't climb, jump, or slide on his own. Playdates, parties, and get-togethers were traumatic for me, and I spent most of them chasing Liam.
Sadly, our friendship suffered because of these differences. "There was a lot of tension between us then," Ashleigh admitted when I told her I was writing this essay. "I worried about you and Liam, but I didn't say anything because it seemed like you always had an excuse for why he wasn't doing what other kids his age were doing."
I see that now. I remember telling people Liam was tired, hungry, or sick, as a way of explaining why he wouldn't interact with them at all. I never came out and said his behavior was strange, and neither did Ashleigh, and the stress between us escalated as our children grew older.
By Liam's second birthday, I had no time to focus on the problems in our relationship. I was eight months pregnant with my second child, teaching full-time, prepping for a move from Tennessee to Wisconsin for my husband's Ph.D. program, and still not sure if Liam was delayed or just different from other kids.
I threw him a huge birthday party and by the end of it, it was clear that something was wrong. He wasn't using any of the words he had been able to say just a few months earlier. While Loki chatted with other kids and splashed in a kiddie pool, Liam ignored his cake, guests, and presents. He was happy to lick the porch railings and flap his arms; he didn't even blow out his candles. It was devastating and I went to bed physically and emotionally drained.
That same night, Ashleigh spent an hour on the phone with my sister -- one of many calls they shared during this time to talk about Liam's delays, I later learned. They discussed the best way to approach me and decided that my sister should be the one to put a name on it all. The next day, I met her at the park with Liam and she blindsided me with one word: autism.
It's a terrifying word, and when it comes out of nowhere to slice through all of your denials, it cuts deep.
I yelled at my sister, fled the park with Liam, and sobbed the whole way home. I think I knew in my heart that she was right. When I called Ashleigh, hoping she'd tell me my sister was overreacting, she simply let me vent. I found out later that my sister also called her crying, just after I did, and so Ashleigh was stuck in the middle.
But I had to put the thought of autism aside and deal with the many changes at hand: My second son, Eliot, arrived; we moved to the Midwest; and we slowly settled into our new life in Wisconsin. A few months later, when I finally was able to look at Liam objectively, without the daily pressure of seeing Ashleigh and Loki, I realized that my son's development was truly worrisome. I called our state's Birth to Three Program, which handles early intervention for developmental delays, and we began the evaluation process.
Meanwhile, Ashleigh's life was going through a lot of changes too. She gave birth to her third child (she'd had a daughter around our sons' second birthday), moved from Tennessee to Texas for work, and was dealing with all of the stress that that brings. I rarely called her and she didn't call me either. At this point, it would have been very easy to let all our years of friendship go.
More of Jamie's story
On my 32nd birthday, Liam was diagnosed with autism. I didn't answer any calls. But the next morning, I needed my best friend. When Ashleigh picked up the phone, I tried to speak, but all I could do was sob. Finally I choked out: "Autism! Why? Why? Why my Liam?"
She had no answers, of course. And our next few phone calls had some painfully awkward moments. "I didn't know what to say to you after the diagnosis," she admitted recently. "I was happy for Liam, because I knew he would get help now. But you didn't want to hear that because you were so depressed. I just always ended up saying whatever popped into my head." At one point she actually said people might use the word retarded to describe my son, adding "Not that I would ever call him that."
Looking back, I see that I was deeply depressed from postpartum emotions and loneliness after the move. And I was consumed with worry and disappointment for Liam's future. Ashleigh's reaction was a common one among friends of people whose children have special needs. Since they don't know what to say, they end up either blurting out whatever comes to mind or just stop calling altogether. One mom I know, who was pregnant at the same time as her best friend, said that after her daughter got an autism diagnosis her best friend "disappeared like autism was contagious."
It was hard for each of us. I took the pictures that she'd sent of her kids off my refrigerator. All I saw in those pictures were the perfect children I was supposed to have. As these emotions simmered and we stumbled our way through one phone call after another, I realized that the most important part of our lives -- our children -- was the one subject that was too painful for us to talk about.
So, in a conscious effort to keep our friendship going, we started talking about pretty much everything except them. When we discussed normal things -- promotions at work, cute new shoes from Target, annoying stuff our husbands did, our Facebook friends from high school -- there didn't seem to be as much distance.
Ashleigh called me every day, sometimes twice a day. Gradually I found myself feeling comfortable enough to talk about Liam more. She listened and asked questions about his diet, therapies, and ways she could help. She did her own research and told me what she had found. Some days she was upbeat, and that pulled me out of despair. Other days, she let me cry and that was enough.
About six months after the diagnosis, I hung the pictures of her children back up on my fridge. Then we had a conversation that made me realize how much I'd missed in Ashleigh's life. We had been discussing one of Loki's quirks when she said, "It's just so good to be able to talk to you about my kids!"
I genuinely hadn't realized that she still needed me too. After that call, I made a point to ask about her children every time we spoke. As I learned more about them, I discussed Liam and Eliot even more. Finally, no parts of our lives were off the table. Easiness and laughter crept back into our relationship.
Then Ashleigh and Loki traveled to Milwaukee for a weeklong visit for the boys' 4th birthdays. There were a few painful moments as I watched Loki and imagined Liam functioning at his level, but I was also thrilled to see our boys together, running happily through the children's museum and giggling on the beach.
I was struck by how far we'd come from that travesty of a 2nd birthday party. The boys' differences were still apparent -- Loki sang, opened presents, and ate cake while Liam made speech-like noises, halfheartedly opened one present, and then dug into his gluten-dairy-soy-sugar-free cake with gusto (and no fork). But by the end of the day, the boys were happily jumping together on Liam's bed.
As Ashleigh and I stood in the doorway watching our sons, I realized we had done it. We had kept our friendship alive -- despite autism, more than a thousand miles of physical distance, and a lot of anger, fear, misunderstanding, and pain.
It's been a long three years since Liam's diagnosis. But I can honestly say we've seen some huge changes lately: He frequently says "Mama" and "iPad." He plays chase with us. His tantrums are way, way down. And I've successfully taken him and Eliot to places like a children's museum and an aquarium by myself.
Ashleigh has stuck around through all of this, and I'm so grateful she did. We are better friends than ever now. And I believe our friendship will get us through a lifetime of the unexpected.
Originally published in the April 2014 issue of Parents magazine.
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