What's it like living with a child with an intellectual disability?*
(Props to my friend Missy for this question. Missy I'm sure has her own take on the subject, as her daughter also has Down syndrome. I love her suggestion to highlight the reality of living with a person with an intellectual disability, or ID. I'm not going to go into great detail about my previous fears, but I'm sure you can all stereotype and consider those fears.)
Some things take a long time with Ellie. Every single thing she learns requires a greater level of intentionality. I didn't realize this until I watched how easily Caroline picked up various skills that Ellie needed broken down over and over again.
Ellie is hilarious. I don't think that has anything to do with living a child with ID, I think it's just who Ellie is as a person. She has me cracking up on a daily basis. Or she has me beyond angry but trying not to laugh on a daily basis.
There's so much paperwork. Medicaid, IEP meetings, doctor's notes. Seriously. I don't feel organized enough for it, even five years in.
There are really good people you meet. Frequently, Ellie gets attention. She gets attention from people because she's cute, because she can have challenging behavior, because she's a huge extrovert. People who have siblings with Down syndrome and gush when they meet Ellie. The mommies in my old neighborhood raised about $1500 more than we normally raise for the Buddy Walk.
And you also have a lot of awkward conversations. (With adults.) Kids are direct. Adults can be weird. I get random awkward questions like, "Isn't she super advanced for a Down's kid?" "Her speech is, but otherwise she's a fairly typical five year old with Down syndrome." "No, she's very advanced compared to my cousin's sister's whoever..." I find myself explaining what Down syndrome is
really like quite often. This may seem like an odd annoyance, but if you assume Ellie is exceptional, here's what
I hear:
* She's more okay than other kids with Down syndrome
* She can participate because she's exceptional
* Her value comes from her abilities, not her personhood or intrinsic value as an image-bearer of God
* A child with DS and more delays wouldn't be as accepted
* You value people based on talents
Ellie is smart. Smart in a savvy or manipulative sense. I just came across an old post from when Ellie was a toddler climbing on a table. I told her not to sit on the table, so she stood up. She follows directions very literally.
It's not that hard. Or that easy. Or always different or always good or always bad. It's just life.
*Technically, Ellie has never been formally diagnosed with ID. As a person with Down syndrome, it's a safe assumption, but she's currently classified as a child with Developmental Delay as we've never had her IQ tested, either by the school or privately. This is a hot button issue in the DS community. We do plan to have Ellie tested when she's older, but five seemed too young. We will need proof of intellectual disability for services when she is an adult.
