When I first realized that my son was on the spectrum, my good friend Christy, who has a special-needs child, took me out to lunch. And she shared a lot of insight into what Sean (my husband) and I were facing in dealing with developmental delays in one’s child. She talked about people staring, sadness, worry, IEPs, the ins and outs of our local school system, which therapists were excellent, which doctors were not, how to find a dentist who deals with special-needs children, and a lot more. And then she looked me straight in the eye and stated the biggest truth of all, “It’s about ups and downs. It’s a roller coaster. And it seems to never stop.”
At the time, I thought I understood what she meant. But that, of course, was before Callum began therapy. That was before diagnostics, parent interviews, Early Steps, developmental pediatricians, and yearly developmental assessments. That was before we experienced words gained and then lost. And then found again. It was before Callum showed progress in putting together a puzzle. And before he subsequently refused to touch one again. It was before he could point when asked to his daddy’s nose and eyes. And before he stared blankly when asked to do so again. It was before a lot of days and weeks when I have been convinced that things were going well. And before the following days and weeks when despair threatened.
I have now been on that roller coaster for a year, and I have a much better idea of what Christy meant. This particular roller coaster has lighting quick dips and turns. I find myself looking around at folks who seem to be handling the ride better than me. Special-needs moms who have actually used a bottle of nail polish in the past year and don’t have two-inch roots. Moms who probably don’t get fussed at by the speech therapist because they are doing a better job at home working on their child’s abysmal joint attention. Moms whose houses are clean and whose pastors have actually seen them more in church than in the grocery store.
I find myself thinking about the highs and lows as I lie here at 5 a.m., having been awake with the boy since midnight. I have stewed about it for hours, feeling it a lot more in the witching hours of his sleep irregularities. But then I look over, hearing Callum’s voice. And I watch him in the light from the T.V. dancing across his face as he points to his eye and awkwardly says, “Eyeee.” He touches his nose and says, “Nnnnose”. And smiles at me and curls in to snuggle.
And the coaster begins to climb again. I can see the climbs and drops behind me as I ascend again. But Callum reaches to pull my fingers into his little hand. And away we go.