Upon the Diagnosis of a Child, or How I Came Unraveled Just Because of Autism

It’s OK to come unraveled a little bit.

My friend told me so when she was tucking me into bed, while my husband was calling my therapist to see if she would make a house call, or if he should sign me directly into the psych floor at UCLA Hospital. OK or not, I was coming a little bit unraveled. (UCLA, no. Therapist house call, yes.)

Maybe coming unraveled isn’t for you. You don’t have to. I waited several months myself. But as parents, many of us find our usual coping resources outstripped by a child’s diagnosis. Not really the diagnosis. The meaning of the diagnosis. Not really that either. The meaning we have ascribed to the diagnosis, and getting that sorted out.

It happens. To most of us.

Anyone who suggests otherwise could be so busy pressuring themselves to hold it together, or think “correctly” about it that they simply can’t spare the energy to imagine what other options exist for themselves, much less for you.

But in parenting a kid with a diagnosis you maybe hadn’t exactly longed for, coming unraveled can be just a bumpy part of the road you were already on. Sometimes, just like our kids, we go through a developmental phase of chaos and disintegration before we consolidate new skills. I didn’t enjoy it, but I don’t think I could have skipped that step. It was an important part of my developmental trajectory.

Working with families of children with developmentally related diagnoses, I’ve seen all kinds of responses: Numbness, blinding denial, scathing and misdirected anger, seething resentment, and gung-ho bargaining (“If we just do every possible therapy, it will go away, right?”).

At some point, most parents find a way to make peace with the diagnosis, even learn to accept and appreciate it. But as we make our ungainly way through the early stages of digesting this news that feels so big at the moment, we can look more than a little “off.”

I dug in with psychotherapy and learned that if I took good care of myself, I would find it in me to take care of others. Sure, it sounds obvious now, but learning that was hard work.

You don’t have to go to therapy, though. If it doesn’t hurt anybody, do whatever works for you. Some people go to church. Others read about other topics. You can sing in your car very loudly, volunteer, take a vacation, ski, meditate, drive to Alaska and back, get sober, work out to Metallica, start a support group, or bake gluten-free muffins.

Just don’t get too stuck. That won’t work, because:

1 – Your child is more entitled to access to your “good enough” self – that part deep inside you that can advocate pretty well, teach fairly effectively, and love more or less unconditionally – than you are entitled to keep thrashing around perpetually in the shallow water of your big adjustment / grief / identity shift / learning curve.

2 – You don’t have all day. So go ahead and feel your feelings. Let other people feel theirs. Stumble, claw or drag yourself to some resource that cares for you and makes you feel better and inspires you to action. Then take a deep breath and jump in the deep end. There’s a lot to learn about supporting and advocating for this interesting little cat you got. You can do it! Which is good, because you have to.

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