As I approach this week on my own with my hubby in NC for the week, I feel the anxiety of trying to juggle it all. I know there are so many parents out there with special needs children who feel the same. It is especially hard now that we are in a new state (PA), with no support network. I miss those few trust-worthy people I could call up when I needed some help (Peter, Fred, Greg, Lori, Sarah, Beth, Amanda…). Last week, I missed my daughter’s induction into Honor Society because my husband was out of town and I just cannot handle Jimmy in crowds by myself anymore. Now I am all on my own. Some people tell me to just find some respite workers in the area, but that is just not an easy or welcome venture. Jimmy is BIG and strong, and it takes someone who really knows him to read his moods and keep him safe. In order for someone to know him that well, they need to spend time with him. That takes money on my part and an invasion in my home.
For the last 16 years, we have had people in our home on a very regular basis. Some people were amazing and some were not. It was exhausting for all involved to get to a level of comfort that I felt I could leave Jimmy alone with them. I just don’t have the energy anymore to weed through the people who sit on their phones watching Jimmy play on his ipad while I pay them $X/hour. Don’t get me wrong, I have had some AMAZING people in the past who have made a huge difference in Jimmy’s life, and I think I would have lost my mind without them. But, I also went through A LOT of individuals who were scary and questionable at best in my home for hours at a time.
So, now I face this week with some trepidation. At least I am not juggling a job as well (a post for another time, as that is not a happy statement), so I just need to keep things as smooth as possible. I will miss another major event for my daughter, her senior presentation which she has prepared and is giving a year early. We, as parents of special needs children (and adults) miss a lot. We are isolated in our homes, and despite everyone’s encouraging remarks to “just come on it will be fine” they just have no idea. They do not understand how disruptive at best, and dangerous, at worst, it can be when we try to just “join in” without the proper support. I am so lucky to still have a husband who has stuck in there and is an amazing support, he just cannot be here all the time. So, everyone, wish me luck this week and say “amen” if you know EXACTLY what I am talking about.
PS This is my second attempt at this post. I deleted my first try as it seemed too negative. Imagine how that one sounded!!