This is a weird post to write. I know some who read this will think I’m crazy or unstable or selfish or insensitive (all accusations I’ve received in comments on posts about motherhood or special needs parenting before, believe it or not). Despite this, I know there are others who will be able to relate. I’m choosing to write this for those who might be able to relate, even if only in a small way.
I have a confession to make: I can’t help but compare my son to other kids with his disability.
I usually see kids with my son’s disability on social media or elsewhere online. I am friends with several mothers of children with my son’s disability — people I’ve never met yet feel strangely close to — on Facebook. I also belong to a couple support groups online for parents of children who have had a stroke, suffer from hemiparesis or hemiplegia, and/or have cerebral palsy. Sometimes, however, I see kids with my son’s disability in person, usually in public (nearly 3 years in physical, occupational, and speech therapy for my son has given me a keen eye for his specific disability in others), but also in my own classroom at times.
Each time I see one of these kids, I take an immediate interest in them. Sometimes I get teary-eyed. If I’m alone, I might have a full on cry about it.
It’s because whenever I see one of these kids, I think of my son. I think of how he compares to these other children. Does he limp that much when he walks? I’ll wonder. Will he be able to swing a bat and run the bases as well as that kid? I’ll ask myself. Will the kids at his school make fun of him the way they do these other children? I’ll worry.
It’s also because I have the unique perspective of having grown up with an uncle who has a disability. I’ve seen both the positives of his life as well as the negatives. I know how life can be for people with disabilities. (This is not pessimism. It’s reality based on personal experience.) Because of this, I am hypersensitive about doing all I can to help equip my son with the love, support, and skills he needs to be happy. And for me, making comparisons is part of that sensitivity.
It’s natural for parents to compare their kids to others’ — to measure achievements or trade success stories or analyze behavior issues. (Anyone who says they don’t do this is either lying to others and themselves or is a strange breed of perfection I have yet to encounter in anybody I know.) But for special needs parents, that comparison is overwhelming.
We’re so used to seeing and hearing about the achievements of “typical” children (whether they are from friends and family or our own “typical” children) and listening to expert evaluations of our child’s medical and therapeutic progress (or lack thereof), we special needs parents can’t help but make comparisons. It’s what a great portion of our lives have been reduced to.
Lately, it seems like all I do is listen to expert opinions and ponder for myself about how close to or far away from “normal” my child is.
- Will he qualify for these services on his IEP, or is he too close (close is not the same as being there, by the way) to “typical” to get any help?
- Is his expressive language improving enough, or do we have to schedule more speech therapy appointments per week and hope insurance covers it?
- Does he have enough range of motion in his muscles to be able to perform tasks for himself, or do we need to try more aggressive treatment like Botox?
- Is he receiving enough intervention to be able to be mainstreamed in kindergarten and keep up, or do we have to fight tooth and nail to get him into a special program?
- Will he have a seizure at daycare or school and choke on his food or crack his head open, or is his EEG “clean enough” to warrant the withholding of medication?
It’s exhausting, this constant analysis of one’s child and reduction of his abilities to some score on a standardized test or medical report. And it only fuels the instinct to compare.
When I see a child with my son’s disability succeed at something, I feel instant joy. I have hope that my son will also be able to succeed at something similar. When I see a child with my son’s disability suffer a setback, I feel instant dread. I worry my son will also battle similar difficulties in his life. And when I see anything about a child with my son’s disability — positive or not — I put myself in his or her parents’ position. I feel their elation. I feel their pain. It’s like their life is my life, and I can’t help but compare what I’d do or feel like in their situation.
I’m tired of making comparisons, both with medical professionals and by myself. Sometimes I want to forget about going to therapy or visiting the doctor. Sometimes I want to quit constantly (and I do mean constantly) reminding my son to side sit on his right and to use his right hand to pick up his toys and to stretch out his right arm and leg and foot and to lead with his right when climbing down steps. Sometimes I just want to ignore all the tests and evaluations and reports and advice from those in the know and let him do his own thing without chiming in and rearranging his gait.
Always I just want him to be a kid — disability or not — and especially a kid whose mom and other adults in his life aren’t constantly comparing him to his peers.