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.