Taking my little mister to the grocery store could be an Olympic event. Whenever possible we snag a Caroline’s Cart from the front of the store, and the adult-sized seat and seat belts make it manageable. Though he’s a teenager, between intellectual disabilities and behaviors that accompany them, taking my teens out can be as challenging as shopping as a mom of toddlers. More than I’d like to admit, I shop without my kids. The rigamarole is a lot to balance with trying to ensure that I get even half the items on the list. It’s so much easier to just go without him.
Meanwhile, I post to my Facebook page almost religiously and blog advocate and do everything in my power to shake up the world on his behalf. So often it’s easier to prepare the world for him than it is to prepare him for the world.
Try as I might, the world isn’t going to accommodate all the needs of my children. To do them justice, I have to get them ready to meet the world, to the best of their abilities. I don’t think there’s a happy medium, a sweet spot, in which I can perfectly align the needs of my kids and the expectations of the world, at least if there is I have yet to discover it.
It would be nice if the whole world would just catch on. If nobody ever stared at my kids, if every public meltdown was met with a kind word and offer of help. I dream of a world where kindness and complete acceptance meet my family everywhere we go, where people just “get it”. While continuously working to create that world, we must live in the world as it exists today.
That often means putting on our armor and venturing into the world, and it also means creating a home where my children will learn as much as possible about the conduct that’s expected of them as possible. While home must be a place to relax and just be, it can also be a place of growth and high expectations. After all, I’m doing my children no good if I let them off the hook on the skills they need to navigate life.
When our youngest was diagnosed with leukemia, his oncologist, in one of many heart to heart talks, reminded me that I do him no favors by handling him with kidskin gloves. He urged me to hold our son to high expectations even when things were there hardest. I haven’t always been able to achieve that, but I have always returned to that conversation when I catch myself slipping. Those wise words have stuck with me for 10 years now and grown ever more important with each year that passes.
Finding the balance between being a safe place to land and having great expectations has been one of the trickiest parts of parenting my kids, and one of the most important. I never quite seem to find it, but somehow it keeps working out anyway.
Alethea Mshar is a Special Needs Mom and Blogger.
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