“He seems so much… better,” she commented, smiling at my son. We were at a small get-together with someone we hadn’t seen for six months.
Better than… what I wondered?
Better than when he used AAC full-time to communicate? When he could use his talker to tell us about Thomas, ask for ice cream for breakfast and verbally stim on “Eiffel Tower”?
Better than when he didn’t like to look at other people, wave hello or speak with them? When the presence of his mothers and siblings were enough?
Better now than when he was ‘behind’ his peers because he had low muscle tone and motor planning was very difficult? When he needed and wanted to be carried all day (and we loved it too)?
I think she was saying he seems more like able-bodied and neurotypical children, because on this particular day, he waved, and made eye contact, and ran around, and played with toys.
I think ‘seems so much better’ means not like he seemed last time she saw him, that is just like many other nonspeaking, dyspraxic, neurodivergent children with chromosome differences.
If you ever want to compliment me on my children, please understand this…
My children are always loved and always perfect, no matter how they move, communicate or think.
My children are given freedom to develop along their own trajectory and live their childhoods secure in the knowledge that they are accepted as they are.
Like all humans, their bodies and minds will change over time. People and environments around them will also change over time. They might sometimes communicate, think or move like their neurotypical and able-bodied peers. Often they will not.
Don’t use words like ‘better’, ‘high functioning’ or ‘normal’. These words imply that there is a worse, a less, or an abnormal.
Please don’t affirm my child when they seem more like neurotypical, able-bodied children. Your words tell my child that you value a version of themselves they can not always be, and have not always been.
Tell my children they are wonderful, kind and inquisitive. Show me that you see the beauty I have always seen in their bodies and their minds.
Please don’t ever say my disabled child ‘seems so much better’. That just hurts.