The Hardest Thing

I was speaking with a friend recently who was trying to understand Rachel a little bit better. She wanted to know what "the hardest thing" is. In all honesty, that probably has a different answer every single day. Or at least a good share of them. Today I'd have to say that the one at the top of my list is that with Rachel there is no "normal." There is no "usual." There is no "status quo." We have to take every single day as it comes. When someone asks what she usually likes to do, I don't have much of an answer. When someone wants to know what she is capable of, it depends. If I'm trying to give her a treat (food or activity) there's a good chance I'll make her angry instead of rewarding her.

She used to be able to do 64 piece puzzles by herself. Today she can't figure out what to do with an 8 piece puzzle. But a couple of months ago she did a 32 piece puzzle with just a few verbal prompts. That sounds like she is steadily getting worse, but in between the 64 and 32 piece puzzles was a time when she couldn't even acknowledge the presence of a puzzle. There is no natural progression. I'm not entirely sure if she can't do things or won't do things, but I'm not sure it really matters because the results are the same.

I have accepted the fact that she is autistic. I also know that she is mentally disabled. She is also epileptic and has ADD. The list of things she has been officially diagnosed with is actually quite long. Unfortunately, I don't think any of these things are the cause of this particular problem.

I wish I knew what her future holds. Once she is completely out of school, there will need to be something for her to do. Hopefully something that challenges her a bit, but not too much, with people who love and understand her. It wouldn't be healthy for her to stay home with me all the time. Everyone needs a reason to get up in the morning. She can't find that reason herself, and I'm not sure I have enough information to find it for her. That scares me. I've seen people who don't feel like they have a reason to be here (it's how they perceived themselves, regardless of how other people felt about them) and I don't want that to happen to my girl.

With most children, you can guess what will be happening next year, in five years, in ten. With Rachel, I can't even guess what will happen in five minutes. It makes planning difficult. This year her two older brothers are not living at home and her two younger brothers are finishing up high school (a junior and a senior). We are once again having to plan when we go to the store (and any other activities) based on who can sit with her or what her mood happens to be like. While other people are looking at having an "empty nest," we are faced with once again needing a sitter (that was the one thing I disliked when my children were all little. There was such a feeling of happiness and unbridled joy in our home when we were sure our oldest son was capable of watching his siblings!). I'm not completely unhappy about missing out on the "empty nest." I really like having my children home (as was evidenced by the wave of near depression I faced this last Monday morning at 7:30 when everyone else left for work/school and I stood at the window waving goodbye). There are many wonderful and amazing and beautiful things in our lives because of Rachel, and I couldn't leave this post just stating the difficult things because in all honesty our lives are so enhanced by her it would feel very inappropriate to just state the problems. However, there are some really, really, really, hard things.