Indefinitely

Indefinitely

Today we received the results of a psychological exam C underwent a few weeks ago, and the first line made me smile: “C is a very handsome, 3-year-5-month old male…” Those words echoed words written in one of his first evaluations: “C is a darling little boy…”

Like the earlier evaluation, this latest one was thorough and contained few if any surprises. However, the very last sentence had the opposite effect of the opening line. It read, “His condition will last indefinitely.”

I was sitting at my desk, the words ringing in my ears as if they had been yelled in an echo chamber. I felt the wind go out of me, and that surprised me: I’ve come to accept the fact that C will always have autism, that this condition isn’t going away. I’ve even come to accept that wishing autism would go away is like wishing C would go away, and I don’t ever want that to happen.

I have high hopes for C. I’m very optimistic that with work and love and patience, he will make great strides. I’m not delusional, I understand the reality of his situation, but I’ve come to love many of the quirks that make C my darling little boy.

And yet a few succinct if accurate words from a trained professional can make me feel like I’m falling apart at the seams…but only for a moment.

7 Comments

  1. You are an amazing family. We love running into you. We see both boys growing and changing and it always puts a smile on our faces.I’d bet that when you when you first got C’s asd diagnosis a word like ‘indefinitely’ was pretty daunting…yet look at that beautiful face now without tubing. C is consistently full of wonderful surprises….. to us ‘quirky’ is synonymous with interesting.Thank you to you and to Stef for sharing your journey with us. I wish my daughter had ‘half the Dad’ that you are to your terrific boys.

  2. You are an amazing family. We love running into you. We see both boys growing and changing and it always puts a smile on our faces.I’d bet that when you when you first got C’s asd diagnosis a word like ‘indefinitely’ was pretty daunting…yet look at that beautiful face now without tubing. C is consistently full of wonderful surprises….. to us ‘quirky’ is synonymous with interesting.Thank you to you and to Stef for sharing your journey with us. I wish my daughter had ‘half the Dad’ that your terrific boys have.

  3. Michael I’m so impressed with your clarity and your sense of what words not to invest in.

    When Milo first was diagnosed I went to the CDC website and read something similarly depressing. The page has been changed since then so I can’t quote what I read. Whatever the words on the screen were that day, however, they translated to “NO HOPE” in my head. It took weeks — no, to be honest — years to finally figure out that those words (or how I understood them) were wrong. There has been plenty of change and a great deal of reason to hope that our kid will have a happy full life, in whatever form that may take.

    Here’s a tiny story that resonates with your post: last weekend at Sesame Place I found myself in front of the window at the welcome book explaining that I needed wristbands for two kids — one with ADHD (Milo’s pal Charlie) and one with ASD (Milo). Unseen by me, Milo had sneaked up behind me and, upon hearing my words, rushed up to the counter and said gleefully, “I’m the kid that’s got ASD.” And then he rushed off again to go play with his pal.

    I stood there dumbfounded. We had never spoken to Milo about his diagnosis (we figured we would do so once he figured out he was a bit different than some of his friends) — but he figured it out on his own. It was an odd moment — I felt sad and joyful at the same time. I think on some level I had been hoping that Milo’s diagnosis would someday disappear (hopefully before I had to tell him about it). So his description of himself as someone who has asd made it seem real and far more permanent than I want it to be. However, and this is the important part, it didn’t phase him at all. At the moment, at least, it’s not affecting his self-esteem or capacity for joy. It isn’t who he is, it’s just something he’s “got” (and everyone has to deal with something in the end).

    xo
    N

  4. Thanks, I needed those words tonight. Love, work and patience. The key for an extraordinary life with my son with autism. Thanks again.