A step back

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.

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Who am I?

For 26 years, I have been the primary caregiver to my daughter. Some kids hang around home for a while. However, most of them don’t require the same amount of care that mine did. While it wasn’t always super hard, most of it was. Navigating her education and health took up a majority of her young life, but that was only a small part. Living with someone who is cognitively low, behaviorally challenging, and can’t take care of their general needs is exhausting. It’s also very time consuming. Someone has to be taking care of her at all times. There is no “down-time”, unless someone else has her. Recently, big changes have been made.

Phoebe and a friend moved in to a home with various caregivers. These caregivers are saints. They are enduring the behaviors, and the ups and the downs of it all. All the things her friend’s mom and I have done for so long. The friend’s mom manages schedule of caregivers, and we are constantly talking and rearranging things. Both girls need care 24/7. We know there are going to be bumps in the road, and eventually things may (or may not) get easier. We both see the girls often and do what we can to make the transition smooth. I worry constantly about her and her life.

As for me, I have been wondering what to do with my life. For the last 26 years, I have been this person, and now I am someone else. I will always be caring for her and navigating, but the 24/7 is gone. Someone once told my mom, “It’s like the anchor is gone that kept you in one place. Without the anchor, you’re just swimming around aimlessly.” My daily life has completely changed, and I don’t even know what to do. I haven’t played a sport, or done much exercise. I don’t have any hobbies like gardening, art (outside of school), reading, or any great passions.

This new era is hard when you’re 54 years old. Yes, 54. One day I was 35, and the next day I’m 54. My adult life has been all about her and her life. What can I do to make her life better? How do I make sure she’s alright and happy? Now, I think I’ve got her there…what about me? This new part of my life is weird. I’m not sure what I like or what to even talk about??? I guess I need to start this process and figure these things out.

Writing? Art? Traveling?

Who Am I?

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A new chapter

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.

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