The autism at our house is relentless. There are so many other things going on with Phoebe that it’s hard to tell which part of her is the hardest to deal with. She has an emotional impairment. What does that even mean? She can’t regulate emotions, but then sometimes, she can. Sometimes, she yells for no reason or throws something or hits someone. Sometimes, she doesn’t. She obviously has some kind of cognitive impairment. Her brain is like an 8-year-old, but yet she has a 22-year-old body. Even I, sometimes talk to her like she’s 22. This is not good. I know this. I have known this for as long as she has been alive. Yet, there are days I just don’t want it to be – and I let my guard down. I just want her to understand. I just want her to not be bribed in to cleaning her room, or behaving at school and not trying to get attention, or picking up her own pads, or washing or wiping herself. (Yes, I said pads- but they really are like pull-ups)

She has autism and/or PDD-NOS. (Pervasive Developmental Disorder – Not otherwise Specified) That’s a mouthful. This means she has developmental delay, language and social delay. This may or may not be the easiest part of her. Just about the time I think I have it figured out- she changes it up. She has anxiety disorder. Her anxiety takes up a lot of our time. She has what is called anticipatory anxiety. So, anything coming up that is mentioned in passing- she will obsess about. Today, she had it in her mind that her babysitter was going to take her. I knew this was not true. However, she had severe anxiety about what time, and when. Why wasn’t she texting? Why aren’t we going over there? This went on for nearly 8 hours. I must have received 60 texts from her iPad about it. Once we finally had it figured out that she was not going there…the anxiety about this week began. “When will I see her? Who will pick me up? What will we do?” I finally gave in and gave her medication to calm her. (Maybe I needed it?)

All of these disorders, syndromes, and anxieties are relentless. Her need for constant care are relentless. She needs someone. There are no days off. I know this. Some days, I just don’t want to. Some days, I just want to not have to deal with it.

As I have mentioned, looking for a home for Phoebe is in the works. Covid messes everything up, but I plan to get her in the right place. She would thrive with friends, and being social. I have made many calls and looked at many places. I have yet to find one that fits. It will happen, and when it does, we will all thrive. Until then…

Autism is relentless.