Today has been the Monday to end all Mondays; definitely one of the roughest days I’ve had this summer. I’ve been extremely exhausted and stressed since the moment I woke up at 5:30 this morning until now. This picture is not a picture of D & E together; it’s a picture of me trying to sneak in a nap in E’s bed, and D trying to get my attention.
This week is our church’s VBS and it’s my first year serving as well as my kids’ first time attending. I initially did not want to send the kids or serve but somehow found myself registering anyway. I’ve been dreading this week all summer. E still receives pretty intensive ABA therapy every afternoon for roughly three hours and it’s always a dangerous combination when I throw in a packed morning schedule on top of an already busy afternoon. I’ve been asking the Lord to give me extra patience and grace as I deal with the new and unknown and He’s been answering my prayers so far. I was pleasantly surprised by how much my kids enjoyed the camp (especially D who has been particularly clingy lately).
I did, however, find myself struggling for different reasons today. My role this year is assisting the third graders with their craft times. As a group of 40 eight-year-olds shuffled into the classroom today, I couldn’t help but take a moment to observe them and their conversations. There were the quiet ones, the “bored” ones, the over eager ones, the chatty ones … I could see so many different personalities in that one classroom and it was also fun to see how the kids interacted with their friends. Suddenly, I became overwhelmed with the sense that I may never see E become that eight-year-old. There’s a chance that I may not be given the privilege of watching her interact with friends and see where she fits in with the various personality types. I won’t know if she’s the teacher’s pet or the rebel … she may just be the autistic girl off in the corner table by herself. The grief struck me quick and hard and I found myself swallowing intensely to stave off the tears. It took a lot of self control; I’m pretty sure that given even the slightest opportunity to unleash them, I could have easily gone off and sobbed myself a good cry right then and there.
This past weekend, we had the opportunity to have a park playdate with another family who also has an autistic daughter. Their daughter is older than E (entering middle school this fall) but it was amazing to meet her because despite her diagnosis, this kid is everything normal in my eyes. Her language was on point, her eye contact, social skills … her mom told me that she’s completely mainstreamed into a regular classroom without any aide now and has friends, does sports, and that most new people who don’t previously know about her autism can’t even guess that she has a diagnosis. This sweet girl gave me so much hope when I met her; she even came up to me and said, “E is just like I was at that age. I didn’t want to play with anyone either and just did things by myself all the time.” Crazy!
But sometimes it feels like the hope is too much for me to bear. To think that E might one day have the chance to move past her diagnosis versus the knowledge that her improvement might stall at any given stage breaks my heart. Will she progress to the level where she can be surrounded by friends, happy, and well-adjusted or will she only ever be the autistic girl that others are aware of but not particularly interested in? The unknown kills me. There isn’t much that we can do other than pray, not be anxious, and trust in the Lord for whatever He wills … but I’m not perfect and I’m struggling with doing that right now. Today, I feel like the what-ifs are getting the better of me and it’s a scary, scary feeling.