Today is Nick’s 5th birthday. Those in the world of developmental disabilities understand the significance of a 5th birthday, but those outside of it usually do not. So I’ll try to explain.
When your child is first diagnosed with autism, you embark on a wild adventure. You feel a bit like Dorothy and her friends as they seek out the all-powerful Oz in the hopes that he will bestow on them whatever it is they’re lacking (a brain, a heart, “the nerve,” home). Like Dorothy’s motley crew, we autism parents are all seeking different things. Some seek a relief from crippling anxiety for their children; others seek an end to self-injurious behavior; still others are hoping to get their children to eat something other than just peanut butter sandwiches.
What Paul and I have been seeking for Nick is his voice. We are just longing to hear what that little guy has to say, to know what’s inside his head—even if it’s just “I could really go for an egg roll right now.” We’re certainly not stuck on literal speech; we’d be delighted with sign language or a keyboard or any sort of device that might help him communicate with us. We just want to know what’s inside that mind of his! But now that we’ve closed out his fifth year, the odds of this happening are extremely low. Toto’s just pulled back the curtain to reveal our reality.
All early birthdays are hard for parents of kids with developmental delays, but the 5th birthday is a real doozy. It’s The Big One. In the world of autism (and all developmental delays), you hear endless talk about the importance of ages 0-5 in terms of treatment and prognosis. The talk goes something like this: “Omg, you MUST do as much therapy as HUMANLY POSSIBLE during ages 0-5. It is CRITICALLY IMPORTANT that you do EVERYTHING in your power to help your child during this CRUCIAL time in his/her development.” Ok, so this might not be *quite* how the message is presented to you, but it’s honestly not too far off. And it is absolutely what it feels like. So you spend the first few years running yourself ragged with doctor’s appointments and therapy; a typical ASD schedule calls for 30-40 hours a week of therapy. For a preschooler.
And the trouble is the message about the importance of “early intervention” (therapy and treatment between 0 and 5) isn’t wrong. Despite a barrage of anecdotal evidence to the contrary, the cold, hard statistical truth is that the overwhelming majority of kids who aren’t talking—or at least understanding—by 5 will never go on to become conversational.
Given the tremendous pressure put on ages 0-5, it’s no wonder that parents freak the eff out about the 5th birthday. During the first five years, you hold onto hope that you can fix this, that you will someday fully recover the child you lost to autism. You plow through all the hours and hours of therapy, the doctor’s appointments, the psychiatric evaluations, the IEP meetings and legal proceedings, the autism books, the google searches, the cold calls to complete strangers who have raised kids “like yours” to get a little comfort and guidance. But deep down, there’s still a part of you that’s hoping against hope that this is just a big misunderstanding, that someday you will just click your heels together three times and wake up safe in bed back in Kansas—with a kid who talks.
When your child turns 5, you have to let that go. We know that our kids don’t “fall off a cliff” at 5, but we also know the odds. Kids can and do make progress after age 5; in fact, I’m told by people who’ve been in the autism world much longer than I have that almost all kids with autism make at least some progress. The question isn’t *whether* your child will progress, but *how much* he’ll progress. Even kids who lack receptive language at 5 can definitely make some serious strides in the years to come. But they’re extremely unlikely to become truly conversational. When it comes to conversation, where your child is at 5 is a good indicator of where he’s headed.
I once met a wonderful mom of a severely autistic, nonverbal child, whom we will just call “Charlie” for privacy purposes. She had a beautiful perspective on her son’s plight; she said to me, “Charlie’s life is going to be different from the lives of my other kids. But his life is going to be good.” At the time, this perspective really helped me, so I latched onto it with all my might. I called it “acceptance.” I decided that, although I would continue Nick’s therapy and “fight the good fight” until my dying day, I would also stop trying to *change* him, to turn him into something he’s not. After all, he’s a happy kid: his life may be *different*… but it’s good.
For the most part, this is still how I govern my own emotions and expectations for Nick. I’ve managed to reach some level of acceptance that this is the little boy I’ve been given and that his life will be good. But there is still a nagging voice in there playing Devil’s Advocate. A voice that says “This is bullshit. His life may be good, but not good enough. He will never experience any of the joys of normal life—confiding in a friend, a first kiss, curling up with a good book, a trip to the movies…any of it.” There’s a part of me that still wants to go *home* to the world I knew before autism, the world where I could dream of dancing at my son’s wedding or watching him walk across the stage at his high school graduation. After all, there’s no place like home, right?
But we are staying in Oz. We’ve grown roots here anyway; I’ve met the most wonderful friends—my very own Scarecrow, Tin Man, and Lion (and then some!). I’ve learned so damn much about autism, about human nature and about myself. I can’t even imagine my life without autism in it anymore. If Nick were to wake up tomorrow morning and say, “Good morning, Mommy! How are you today?” I think I’d be more confused than anything else. Our lives are in technicolor now, and there’s no going back.
So it looks like we’re stuck in Oz. But we’ve gotta get off the Yellow Brick Road. No more wishing for a magical wizard who will solve all our problems. No more pipe dreams. It’s time for reachable goals and realistic hope—hope that’s tempered with an understanding of what’s possible. Someday Nick may be able to describe the concrete world around him. He may be able to say that the sky is blue or tell us his tummy hurts. These are the types of conversations that are possible. And if these conversations ever *do* happen, we’ll celebrate them like we’re somewhere over the rainbow!
Happy Birthday, my sweet boy!