Parents of Children with Special Needs: Missing the Milestone Moment
Whoever invented the Allen wrench needs to take responsibility for his actions. Allen, whoever he is, needs to send an ambassador to my home with apologies and power tools.
This is just a smattering of thoughts over the course of the four hours it took to disassemble my twins’ toddler beds and reassemble them into beds for full-sized humans. It shouldn’t have taken this long. If the directions had not been smudged photocopies that blurred like Rorschach prints, maybe I would not have screwed the frame in upside down. If the nuts and bolts did not have to be inserted into holes the size of quarters and then gently coaxed into hanging on like a giant game of “Pick-up Sticks,” maybe it all could have gone more smoothly. If I had waited for assistance rather than insisting that I do it on my own, perhaps I would not have bloody knuckles.
If things had gone a thousand different ways, perhaps I would have appreciated the momentous occasion that is the final transition from baby to toddler to kid. But instead, we finished the last touches on the beds, literally ripping the plastic off the mattresses an hour past bedtime. The kids were weird and wired in that way that kids get when it is well-past rational hours. They jump excitedly and actually bounce off the walls. I sit on the floor and mostly want to cry or sleep or maybe take a picture so I can look back on it more fondly than I am right now.
This is how it always is.
Whenever my son with cerebral palsy crosses a developmental rung on the ladder, I am always caught wrong-footed.
I am so worried about the twins wandering off at the park that I miss his unassisted sitting until he is about to topple over. I am looking the other way when he takes that first step in the gait-trainer. I am on the phone with the pediatrician when he says “mama” for the first time. I am holding him in my arms and talking to a mother at school and miss that he is signing for “more, more” kisses and so I feel bereft when I finally see it and he’s moved on to wanting more of something else. I miss the magic of the moment.
When he finally learned to chew properly, it wasn’t me that taught him, it was in his preschool classroom with his feeding therapist to the applause of all his peers. “Chew, chew, chew!” they cheered and he did. When he finally stopped using his speaking device as a really fun iPad and began to actually communicate with it, he was also at school. According to his speech therapist, he introduced himself to a group of touring parents. Unprompted, he typed out, “Hi, my name is Charlie. This is my speaking device.” Of course he did.
Because special needs parents have to do more for our children, we feel it acutely when we let them down.
If I’m not careful, the guilt can build quickly, like rain that swells a river and finally breaks the dam. There are so many options at hand for this kind of self-recrimination—parents are great at this. Special needs parents are perhaps the best. Because we have to do more for our children, we feel it acutely when we let them down. When we skimp on stretches, or fail to properly celebrate the milestones or simply don’t engage as much as we could, we feel it like a hunger pang.
And yet, if I flip the glass to the half full version, I see all that I am doing.
I did put those beds together like Wonder Woman with sheer willpower and a tiny, tiny wrench. I did fight insurance for that speaking device and cheer on the next ten steps in the gait trainer and the criss-cross applesauce sitting. I continue to chant “chew, chew, chew” at home. And I give the hugs and the smiles even when I’m bone-weary, even when it is an hour past bedtime, even when the days run together and I forget to take that picture of the first night in the “big kid” beds.
When I look at it from this angle and in this light, I begin to see the magic and let the guilt go.
Jamie Sumner is a special needs mom, author and blogger.
Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.
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