Fast forward to bedtime, I'm tucking Caroline into her "big girl" bed, complete with brand new pink/rainbow/embroidered quilt from Pottery Barn Kids, when something catches my eye.
The missing putty is no longer missing...
There's a saying about death by a thousand paper cuts. I'm pretty sure that's been 2018 for me. Any one of the events that have taken place are manageable on their own- but the combination? The accumulation? It's too much.
I've been pretty non-specific about the details surrounding my time off from work. While I'm fine over sharing my own life, I hesitate to put it all out there about my children. This is where parents in our shoes become so isolated. In a way, it's less taboo to talk about a life threatening illness than a nuerodevelopmental disorder. The stigmas. The behaviors. The judgments.
I thought I understood children with special needs. I've been working with them for 20+ years, a teacher for 15 of them. I've taken the classes, read the books, gone to professional development workshops, and sought out any opportunity to help me work with this particular segment of the population. I know that my patience and depth of knowledge has allowed me to modify curriculum so that every student could thrive in my classroom. This was a point of pride for me.
Enter my own children.
It's quite an experience to parent children with atypical nuerodevelopment. We've had to completely change our lives- me leaving my job, approaching daily tasks in a painstaking step-by-step process, adjusting our routines to be exactly that-routine. Through it all, our boys are amazing, brilliant, and hilarious- because of, not in spite of their differences. I would not change a single thing about them.
But it's exhausting. Planning each day so as not to set off anyone-choices for meals, clothing, wake-ups and bedtimes, sibling interactions, play dates, transportation to and from school, no detail can be overlooked because it all matters at this point. And I know there are those out there who may say that kids need to learn/get over/deal with it. Honestly, for a period, I was there too. However, many appointments, tests, and interventions later, we've arrived at this place.
I also know that many who know my children may be completely thrown off because they seem so "normal". The thing is, they work so hard at being "on" in public view (kind of like their mother in that regard...), it makes home life that much more difficult. We work really freaking hard to keep the bad stuff out of sight.
I reiterate that I understand that things could be worse. We are not dealing with a life threatening illness. Behavioral modifications and academic interventions will provide them with the support they need. We are financially able to have me out of work for another year. Our school district has been amazing and clearly cares for our children. We will survive. But it's so much harder than I ever knew it could be. And I'm publicly admitting that I'm struggling.
Tonight I dealt with my stress through the slow draining of a bottle of wine and some therapeutic writing. Tomorrow, I will wake up and tackle the day-and the Crazy Aaron's Thinking Putty- with renewed energy and lighter load to bare, because I finally opened up to the fact that this really sucks.
