Autism and a Mental Health Day

Recently I had the opportunity to be home with RJC for what we typical people would call a "Mental Health Day."  During the course of that day, it occurred to me that we have very high expectations of our kids and adults who are diagnosed with autism. In fact, we seem to expect better behavior from them than we would from ourselves. How odd.


For example, there are people who get frustrated or angry so they yell, swear, bang things around, slam doors. Not that these are good ways to express frustration or anger but they get it out. When RJC feels that way, she yells, pinches, throw things and makes holes in the wall. Then all the adults in her life talk it over, try to figure out the triggers, create a "program" to avoid this happening again. We then expect that she will learn a different behavior. Um. Ok. But I still get super quiet and distant when I'm frustrated and angry, and I've been known to bang a pot or two around, and nobody has ever come to me with a program and insist that I change my behavior. Yes, of course we always want to give her proper tools for those emotions, but shouldn't we acknowledge that she has the right to those emotions? And that there are probably many times she has those emotions and handles them quite well!


My gal goes to her Day Program every day except for the seven days the program is closed and the two weeks that she is at overnight camp (which is still a program). As adults, we usually have the option to take time off from work. Usually somewhere between ten and fifteen vacation days at a job we are just starting and often more days if we have worked there for longer. We also have the standard Federal holidays (probably seven to ten days) as well as sick days allotted. Yet RJC has seven days. Total. Those seven days we may or may not do what she wants to do, as we may have family obligations or other reasons why we need to go someplace she'd prefer not to go. Still, we usually go someplace because we don't want to be bored at home.


It has never really occurred to me that perhaps she needs some time too. Honest to goodness "down time" where she has nowhere to be at any specific time, nothing she "must" do, just to do whatever she wants to do at the time. Recently, I was away for five days and when I came home I had cataract surgery that had me out of work for three days. I was told that at a program she attended one of those evenings, she mentioned "mommy's eye" and I was so shocked. Yes, I know she is aware. It just did not occur to me that she gave it much thought when I was out of her sight. Obviously, she does.


The third day I was home, I had originally planned on being able to drive however that was not to be. Instead of having my husband or daughter drive RJC to her program, I asked her if she'd like to stay home with mommy. Well, the smile I got told me everything! At some point during the morning I asked her "Get dressed or stay in pajamas?" "Stay in pajamas please!" was the response. So stay in her pajamas she did. As the day wore on I could see that she was truly enjoying her time doing her thing on the IPad and sometimes looking up to say something to me. It was a lovely day. I took a nap (in the living room with her and turned on the door alarm - just in case you were worried as you read this). We had lunch together. We did nothing but enjoy being around each other.


The best part of the day was when she looked up and said, "Thanks for the relax with mommy." Oh, my heart melted. And that's when I realized that we never give her the option for a mental health day. Well, why not? Her Day Program is like work for her. She has to work hard to listen, communicate, stay in control. All things that are difficult for her. She needs down time as much as we do. On top of that, we have never known her to have a headache, a stomach ache, feel incredibly tired because she didn't sleep well, feel stressed, or...well...really anything. She doesn't have the ability to communicate the smaller issues we deal with during the day or the twinges of dismay or frustration we feel during the day. She cannot vent to a friend about the frustration of being with people she may not like. Whatever it is that we share with our friends over the phone, over coffee, over drinks, over ice cream, even over Facebook - she does not have the opportunity to do any of this. So where do those emotions go? Internally, I can only imagine what goes on for her.


I'm thinking that I will need to offer a mental health day again. Perhaps a day to spend with her sister, or dad. Maybe we need to take a step back and really pay attention to her anxiety level and instead of thinking "well, it's the autism thing and we never really know" instead start to think "well, it's the autism think and we never really know so maybe she just needs a day to do nothing but stay in jammies and hang out on the couch."


Because we all need that kind of day sometimes.