The magic and heartbreak of the revolving door in our autism journey

brokenheart

By Mari-Anne Kehler

What do you get when you fall in love?

As Dionne Warwick sang: “You only get lies and pain and sorrow. So far at least, until tomorrow, I’ll never fall in love again.”*

Another school year ends, and I’m reminded of the endless cycle of heartbreak. “Why is mom wiping her eyes?! Why are mom’s eyes wet?” Liam asked me, as we were driving home from school a few years back.

I tried to avoid him seeing me cry, because historically it freaked him out, and started a long drawn out fretfulness which would become an oft-repeated script for years to come, discussed at inopportune times throughout the foreseeable future. But, I was in full cry mode, so I took off my sunglasses, let him see my tears and said, “What do you think?” letting him articulate for himself what he was witnessing.

“Mommy’s crying,” he decided. “Exactly,” I said, followed by Liam’s inevitable question: “Why is Mommy crying?” which was not so easy to answer.

The easy answer was I’m sorry Liam’s (fantastic) aide of the last year (who was like a big brother to Liam) was leaving for graduate school. True enough. I’ll miss him. But it was more than that. It was the culmination of the (quite literally) hundreds of magical lives that had come and gone in the years since Liam’s diagnosis. What therapists/experts don’t often realize (why should they?) is that it’s painful to become attached to them, only to see them move on with their lives. It’s natural, but painful, this revolving door of relationships.

Liam was diagnosed with autism before age 2. My husband and I were entirely unprepared for what that meant, what we needed to know and how we’d ever learn enough to be the parents Liam needed and deserved. We had barely figured out how to raise any baby, let alone one that needed unique skills from us; who needed us to listen so carefully and hear what he wasn’t able to tell us with words. I was a naïve first time mom who had imagined a hippy, new age parenting style that included lots of tofu, cloth diapers and a carefree parenting approach that would simply and naturally unfold with each new phase of my son’s growth. I had no way of knowing there was very little that was simple or carefree ahead for many years, and I had so much more to learn.

Liam’s earliest therapists meant everything to us. They helped point us to the north star of Liam’s progress, encouraged us, taught us, advised us and often were closer than family members as confidantes and sages. We would cling to their every bit of wisdom and insight. They were our lifelines to getting through the toughest of days. This mixture of gratitude and need felt a whole lot like another emotion: love. Sounds strange, perhaps, to fall in love with a professional paid to help. But when someone is the key to helping you raise your most beloved and cherished child, you truly do often fall in love with that seemingly irreplaceable and important member of your extended family.

But eventually, it became clear to me that it was going to take incredible courage and stamina to continually fall in love over and over again, only to hear one of the following explanations: I’ve taken another job; I’m getting married/pregnant/moving; I’m going back to school; I’ve changed careers; I’ve decided on a change of pace/adventure; I’m going to find myself; I’ve been promoted; I’ve changed agencies; I’m taking a break…

After a while, the revolving door is just too painful, and so you learn to wait for it and see the signs in advance. Today, after many years of resilience, I’ve learned a sort of acceptance. I’m now able to be happy for their new adventure, because while the therapists still mean the world to Liam and me, I often get to be the one who is helping to guide both Liam and the therapists; after decades of experience in the world of special needs schooling/transition/life skills/adulthood/employment stuff I can usher us all to the next phase of our lives. I’m older now, in fact, usually old enough to be the teacher or therapist’s parent. So the roles in the relationships have shifted, but the feelings of love have not.

What do you get when you fall in love?
A guy with a pin to burst your bubble
That’s what you get for all your trouble
I’ll never fall in love again,
No, I’ll never fall in love again.*

But we do fall in love again. I do. And Liam does. He opens his heart so willingly and lovingly to these amazing people who have chosen to make it their work to know and teach him. And they usually open their hearts back. That’s the magic and the pain of it.

Liam is now 21. He’s an amazing man: kind, funny, quick, charming and handsome. We are coming up on 20 years since his diagnosis. After all the years of school, therapies, training and support, he’s living in his own home with supported services, a roommate and a he has a job. He volunteers twice a week and finds lots of ways to give back to his community. He’s a brilliant cook, a decent housekeeper and cares well for his frog, Kermit. We still have the revolving door of therapists, coaches and heartbreak. And because of the nature of his needs, we’ll have therapists in our lives forever.

And we have a choice every time – shall we willingly fall in love again, and risk the pain, or shall we just get “so” close to those therapists and keep a distance, knowing it will end like all those that have come before?

In the end, courage and love win out, and we dive in. And we fall in love. And they leave. And it’s worth it. Because we get to experience another of life’s amazing creatures on this planet who loves and cares for our beloved, and sees them for all their wonder, and celebrates all the new milestones with us. I won’t lie, there is a cost to taking the leap: heart pain. But the cost of not leaping is not worth paying. As my friend Bill says: “God is in the space between me and you. The closer I am to you, the closer I am to God.”

And so we leap…

***

* “I’ll never fall in love again” written by Burt Bacharach and Hal David for the musical “Promises, Promises”, 1968.

Mari-Anne with her son Liam

Mari-Anne with her son Liam

Mari-Anne Kehler has held marketing roles at top global organizations for over 30 years and is currently Chief Marketing & Strategy Officer at Green Hasson Janks, an LA based business advisory firm. She and her husband Eddie are parents to Liam, and she has been active in the community in the areas of disability and autism advancement of jobs, housing and transition to adulthood. She has mentored families and professionals for almost 2 decades. Her particular specialty is creating successful transition strategies to optimize the disability journey into adulthood.

Mari-Anne is Vice President of the Autism Society of Los Angeles board of directors, and serves as a board member for The Miracle Project. She is also Chairman of the Community Advisory Council of the Southwest Special Education Local Planning Area (SW SELPA) in Los Angeles. She has served on numerous nonprofit boards is the co-author of the Amazon bestselling book, Putting the Profit in Nonprofit, which provides insights to assist nonprofits to increase their impact and maximize their outcomes.

1 Comment

  • You describe this dance of human relationships so wholly and complete in its ever changing beauty – the whole catastrophe. This is a 21st Century living parable. A teaching for us all! Thanks.

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