Within the past few weeks, I’ve been approached by two different mothers, each of which has a child who was recently diagnosed with an Autism Spectrum Disorder. Because I have an eight-year-old with Autism, they contacted me, each asking, “where do I start?”
They were calling looking for advice, and I answered their very reasonable, logical questions. Where to get a second opinion, what services to ask for, where there are parent support groups to join, what sort of therapy is the best . . . the normal questions that any parent of a newly diagnosed child would have.
But under all of those questions, I hear what they really need to know. It’s the same thing every time. I hear the catch in their voices; the fear and grief.
I know what they are looking for; they want a roadmap. They want to know what to do and who to call and where to start. And they want to do it all RIGHT NOW. They have learned the importance of early intervention, and their desire to get started right away is wise.
But I sense that some of the urgency is secretly due to a private desire to do the impossible—to turn back the clock. They want to undo anything that got them to this point, because they can’t imagine the reality ahead of them.
I know where they are, because I truly have been there. I remember the feeling in the pit of my stomach, the feeling that this can’t be happening; not to our child, not to us. The feeling that we were not equipped for this—that this is for someone more patient, more knowledgeable, more prepared. I had seen parents of ‘special needs’ kids, and they seemed to fit a mold. They were people who had a patient presence; a hard-won gravitas.
They were not like me. Impatient, impulsive, flaky; three kids under 38 months in a too-small house on a too-busy street. There was no way we could handle this.
I remember that feeling well, and I remember the feeling that there was no way this would ever be ok. And I see that in the eyes of these parents I speak with. I know that’s where they are.
I hesitate to tell them that it will all be ok. Because I know they will never believe me. They will think I’m lying; or, worse, that I’m a lunatic. It will never be okay, and they know that in their gut. They are certain that a switch has been flipped, and they will never feel like ‘just another family’ again.
So I tell them to take a deep breath. Try to do one thing each day—just one thing. Make a list, or call a doctor, or look up a support group. And it will be hard to do just one thing, because they want to do everything.
But settle down. Slow down. Don’t.
Whatever the diagnosis, and whether your child is diagnosed at birth or at ten years old, it is so easy for a major diagnosis of any sort to consume you. It is so easy for the whole family to shift focus and become The Family Dealing With The Diagnosis. Fight that. Fight it hard.
Because the more you fight it and the more you insist on keeping that feeling in check, the faster you will find some livable level of normal life. And you, your newly diagnosed child, your spouse, your other kids—you all deserve that.
So slow down. Take a yoga class. Go out to dinner with your husband. Take the kids out for ice cream. Does the outing turn into a disaster? Go home, go to bed, and try it again next week.
This isn’t a sprint; it’s a marathon. And starting slowly, step by step, you will make it. You will, your child will, and your whole family will.
And one day, you will look back and realize a year, or two years, or ten years have passed. And you’re just another family. And you’re okay.