We have started a new chapter in getting Phoebe a home of her own. Getting Phoebe placed has been the goal the last few years, but finding what will truly work has been tricky. In our small town, the Adult Foster Care availability is not great. I have some requirements, and I am going to make sure those things happen. In a turn of events, Phoebe and a friend will live in a home and we will staff this home ourselves through Community Mental Health hours. To say this is a process is an understatement. This process started last winter, and now we are working towards a home in early February. This means staffing and such has to be set. Finding good staff, and people who actually want to work with special needs adults is not easy. The other not-so-easy part is dealing with who will pay for what. We have a wonderful caseworker, and I am thankful that she understands what we want, and what we need for this to work. She’s creative and helpful. (but that doesn’t mean they will pay for it).

Phoebe knows this change is coming, but doesn’t truly understand. Her behaviors are all over the place, and she’s undone by the thought. She claims she’s excited, but I know she isn’t sure about living in a new house. She’s a social being, and loves to be with friends and staff. She wants constant attention and hopefully this set up can cater to some of that. She will have daily activities for the school year and then other fun things during the summer. (Camps, daycare, etc!).

Her uncontrollable sensory eating will be the biggest challenge in a home of her own, as someone has to constantly monitor. This type of monitoring is not something you can let up on, or she can end up in a very serious health situation. Believe me, I am not perfect, and I give in to her wants because it’s just easier than the alternative. But, I work hard to make it happen about 90% of the time. When she is told no, things escalate and it’s going to be hard for everyone.

I’m pushing through some of the regression of behaviors because I know what’s driving them. I’m keeping as positive as I can around her so that she knows this is the best thing. It’s hard when someone is verbally abusing you most of the days and nights. Her not being able to discern between positive and negative makes it very trying. I keep saying how fun it’s going to be, knowing I’ll be exhausted for a while. (How is that any different than it is now??)

Phoebe is 25-years-old. This fall I had Phoebe’s final IEP. Twenty years of Individualized Education Planning meetings. Sometimes there were multiple meetings per year to discuss behaviors, and placements in over 5 different programs and 9 schools (I think?). Meetings with mega-tears from me, and then meetings where I demanded better. Twenty-five years of navigating special needs and it’s time for someone else to help. I’m here for the big things and the normal mom/caregiver things, but I need a break.

I’m excited for this new chapter and hoping to see her thrive.

Phoebe is 25-years-old. Twenty-five years of navigating special needs.