The irony of respite care for my family is that while Jack stays home during church doing sensory activities with Kirsty, Charlie is still a church torpedo.
It takes massive amounts of persuasion and mind games to get him to a) put on church clothes (today this included one Adidas sneaker and one batman sneaker—the other half of each pair have gone missing. We need new shoes, like now. Church-ish shoes people, not the superhero footwear he wants to wear), and b) get in the car to get to sacrament meeting on time.
You know that saying about how we should always do something we fear every day? That saying is so lame. It is irrelevant for parents of children on the autism spectrum. Every single day is a rigorous, anxiety-producing battle to get someone to wear underpants, to not poop on the floor, to put on situation-appropriate clothing, to stop screaming in the chapel, etc and etc.
I live in constant fear of not being able to convince my children to do normal, necessary things.
I wake up daily wondering what I will face with my two kids on the spectrum who don’t want to do anything they are supposed to do. What will I have to coax/bribe/force them to do today? I feel like I run out of ideas before breakfast.
I read a book by a local author Terrell Dougan called That Went Well, Adventures in Raising My Sister about her experience caring for her mentally disabled sister. The entire book made me laugh out loud and nod my head in understanding, but the line that I’ve never forgotten was this: “What fresh hell awaits me today?” It was practically her daily mantra. I totally get this.
What extreme, inappropriate behaviors will the guys whip out next? How will we be judged by those who think children shouldn’t be rolling around under the church pews and wearing mismatching superhero shoes to church?
I have a nagging sense that while most people can look past the weird behaviors of my children, there are those who will only see the strangeness.