Hey there caregiver, (or special needs parent, medical mom, disability dad, human being, etc),
Okay, tell me you’ve been here too? I’m taking my medically complex daughter to the pediatrician’s office for one of her wellness appointments. I walk up to the front desk and check in and then they hand me a paper or an ipad to take a survey of milestones that I have to answer about my child.
“Does your child walk?” No.
“Does your child babble?” No.
“Does your child play with toys unprompted?” No.
No. No. N/A. No. And so on.
By the end, all I’ve done is click the same button 22 times and am left with a stark awareness of all the things that typically developing children are supposed to be doing and my daughter isn’t… and probably will never do.
I want to be clear: on most days, I’m totally cool with my daughter’s disabilities. I don’t need her to meet any specific milestones to be okay. I don’t push her to do any specific types of activity unless she shows interest in them. I don’t base her worth in any way off of what she physically can or can’t do.
But surveys like this remind me of what other people think my child should be doing. They remind me of the ways that my daughter may be judged and considered by those who don’t understand her.
They reopen old wounds and resurface old guilt that maybe I’m not doing enough to help her meet milestones. When it’s all said and done, these surveys feel like they’ve boiled my daughter down to a list of deficiencies instead of considering her as a whole resilient human.
And I hate them.
I also had the thought that perhaps I’m overreacting. Maybe I’m the only one who feels upset and triggered by these surveys. So, earlier this week, I asked our community on Instagram whether or not they feel upset and frustrated by these surveys as well. The response we received was overwhelming.
Out of 300 respondents, 93% agreed that they also can’t stand these surveys.
Then messages started pouring in.
We heard from caregivers who were relieved to hear that they weren’t the only one to experience this. We heard from others who shared their own grief about taking the surveys. And we received so much helpful advice around opting out of these milestone surveys too. (Yes! That is an option! You don’t have to subject yourself to them.)
That left me feeling a little silly about thinking that I might be the only one upset by this situation. Clearly this is a community-wide issue.
That’s the thing about never voicing or asking about things like this: we think we’re alone in our struggle, so we’re afraid to be vulnerable in sharing our experience.
But that reluctance further isolates us from our fellow caregivers and keeps us from discovering the issues that affect our community as a whole.
So friends, we have two takeaways for you today:
One, next time you get handed a milestone survey that you know will upset you and won’t offer any benefit to your child anyway, perhaps note “no changes since last visit” and just hand it right back.
And two, keep sharing with each other. Keep naming your fear, voicing your struggles, and celebrating your joy with those of us who are going through this caregiver life alongside you.This is the magic that glues us to each other so we can advocate for a stronger future for our kids together.
And being open and vulnerable, even when we don’t know what the response will be, is an act of bravery. And you are so brave.
Until next time, caregivers <3
