As summer comes to a close, I have had a lot of thoughts on life with Phoebe. I think it’s become very apparent that I have changed a lot as I age. My body has changed, my mind, my work, my interests, my living situation, and my overall life has been redirected. Even my taste in art has changed. For Phoebe, this is not true. Phoebe is still Phoebe. She still watches the Wiggles, listens to Big Time Rush, rewatches one part of the Mighty Ducks over and over again while stimming, eats sandwiches consistently, drinks 100 ounces of water, loves goldfish crackers, sneaks food all hours of the day and night, doesn’t sleep at night, loves baseball, etc.

During this summer, it’s become even more clear that Phoebe thrives on stability. She has to know what’s happening next, and next after that. Moving her in to an apartment has gone fairly well, but not great. Without 100% care being paid for, there is a ton of back and forth, and for me this is fine. I can roll with the changes and do what is necessary. Phoebe can’t. Phoebe’s mind is somewhat like an 8-year-old and she expects life to be like when she was 8. Trying to explain to her that life has changed doesn’t work. She tries to understand, but the anxiety creeps in and meltdowns occur. She doesn’t even really know why she’s having a meltdown. I’ve just been watching when these happen and figured out why. Phoebe is a self-centered autistic individual with emotional dysfunction, a cognitive impairment, anxiety disorder and a large eating disorder. If she doesn’t get what she wants, you pay for it.

My younger self spent a lot of time explaining, writing down schedules, and being super consistent. This is not as easy as it used to be. You have to maintain that same amount of energy or she takes advantage of it. Her caregivers are so patient, and she can be so difficult. She has a list a mile long of meds for anxiety and moods (6 for those 2 things alone). I’m the one making sure she gets to these appointments, that her meds are correct and that she is set on all things for life. Again, I’ve changed, but Phoebe’s needs have not. She’s used to me taking care of her, and when this doesn’t happen it’s hard for her. Her 8-year-old brain just doesn’t understand.

Moving forward is going to be a challenge, and what the future holds for Phoebe is truly unknown. I will continually work to find the best option for her and try to maintain consistency as best I can with all these changes.

So, we’ve had to take a step back. Phoebe’s situation at her new home did not work out. Her behaviors and anxiety got the best of her, and we found ourselves back at home. I’ve struggled with how to write this and not blame myself. In the matter of a few weeks, I decided to move her, move myself and she graduated from her post-secondary program. This was ultimately a bad decision. Too many changes, and I should have known better. My philosophy was that it was better to do it all at once and rip that band-aid. Well, that backfired.

I take all the blame on this one. Phoebe became aggressive, and unpredictable when she couldn’t control her environment. I had almost forgotten what that Phoebe was like. Not sleeping, aggressions, blurting and repeating, over eating, etc. She didn’t have many full-blown meltdowns anymore at home, as I ultra structured her world around her. I almost forgot. Almost.

I ended up doing more work than I did when I was at home, and that obviously was not the goal. Her independence was the goal. It just didn’t work. While I am sad, angry and literally so exhausted, I’m also aware of how Phoebe feels. She can’t help that it didn’t work. She can’t help who she is, and how she feels and reacts. (Mostly). I also can’t wrap my head around why I can’t help her more. It’s a vicious circle.

For now, she lives with me but I am actively seeking a better situation for her (and for me). Something that will meet her needs. This is all we want.

Phoebe would like her independence, and so would I.