#host home

[shepandem]

Who else is still the kid in their family despite being an adult?

I spent Christmas morning with my host home caregiver Miss R, and the afternoon with my parents and sister, and family friends. My parents brought all the presents they had gotten everyone to the friends’ house so we could all open them together.

I get excited about presents, and have a hard time waiting for things, especially when there’s nothing preoccupying to do while I wait. Everyone else was happy to keep talking and eating snacks, but I got to open one of my presents early, while they were talking, to distract me and help me wait.

My grandma has dementia, and also needs to be kept busy, but for her, it’s because she starts perseverating on trying to help people with tasks, even if there’s nothing that needs doing, or she’s not able to help.

My mom let my grandma and I start opening our stockings early, while everyone else was still transitioning into the gift-giving mode. She told everyone else it was to keep us occupied.

I don’t find being spoken about or accommodated like this to be patronising, it’s just how my brain works, and what it needs, especially during holidays, when I’m already stretched thin socially and sensorily. I also don’t really enjoy things like white elephant games, because they’re always grownup presents that I have no interest in or use for. I got some stuff to make bread with as my white elephant gift, and gave it to my mom, because I can’t cook, and don’t like cooking anyway.

I was excited that I got a bunch of Pokémon cards, a binder to put them in, and a new Our Generation doll. My mom loves getting fuzzy socks as gifts. I think socks are the worst gift there is. My sister got excited because she got a fancy coffee maker that steams milk and makes lattes and stuff. I’m not able to fathom how kitchen appliances could ever be fun, but I’m glad she likes it.

Are you still the kid in your family? Is it natural, or do you feel patronised, and that the kid accommodations aren’t necessary or wanted? Who else is still the kid in their family despite being an adult?

[confectionerssugarspaceelf]

OMG THESE PEOPLE I'M LIVING WITH

THEY TREAT ME LIKE I'M STUPID BECAUSE OF MY AUTISM DIAGNOSIS

I CAN ONLY USE THE ELECTRIC KETTLE WITHOUT SUPERVISION BECAUSE THEIR STUFF IS FANCY (I turn 21 in 2-and-a-half weeks)

THEY CAN'T FUCKING PRONOUNCE MY MEDICATION WHEN TOLD AND THEY GET THE PRIVILEGE OF BEING ABLE TO READ THE NAMES

I DIDN'T GET THAT I HAD TO LEARN THE NAMES WITHOUT THAT AND DOCTORS THROWING DIFFERENT NAMES FOR THE SAME MEDICATION

THEY ARE PROJECTING THE DUMBNESS

[ren-writes-stories]

Update

It may be useful if I updated on a regular basis, but that’s not really my speed apparently.

My life has been busy, but I think I’m getting it under control finally. 

Work has been difficult, my boss is the type who feels timely communication is for suckers. So, I’ve been working on getting him used to giving feedback, providing positive reinforcement (thanking him), etc. It’s getting better. At least I haven’t been the most dramatic person in my training program, by a long shot. 

My wife and I are doing well, still reasonably happy together, I hope that never changes. We have our rough patches, but I think both of us know that we mean well and want the best for each other, so that gets us through things.

The teen we’re a host home for has basically given up on school, and our county basically doesn’t enforce truancy laws. This puts us in an awkward position because we can’t exactly force the teen to go to school, and our agency has been giving us vibes that it wants us to not care. This kid is smart, he could get a degree if he put his mind to it.

The lack of support by the agency is confusing, as most metrics show that having an education is beneficial. I mean, a gender non-conforming trans* youth of color, he’s already playing life on hard mode, I don’t see why they’re not doing everything that can to encourage everyone to get every advantage they can.

My wife isn’t sure she has the emotional energy to keep fighting, and feels like we’re letting the youth down by just providing food and shelter. Additionally he’s spending half of his time at friends’ houses now. So, we’re not sure if we’re helping, but I don’t see how having him move host homes would help anything, other than he may attend school as part of his “honeymoon” behavior for a few more months. 

In other news, our puppy is having surgery on Friday, for her knee. It’s expensive, but I hope it helps. The poor thing has been in pain for a few months, we’d been hoping it would heal naturally, but she keeps on re-injuring it. If you have a choice when your pet is fixed, have them fixed after a year, this particular injury is more common in dogs that are fixed at under a year, and under 6 months. 

I should do a post about the diet I’ve been on, it’s been amazing and probably deserves it’s own post. 

[shepandem]

Okay friends, here’s the first update on living in my new host home, which I like to tell myself you’ve all been waiting for!

I moved in on Friday (today is Sunday) and right from the start, it went so smoothly! My new caregiver R said she’d come at 10:30 to pick up my cat, and she was there right on time. My case manager said she’d also be there at 10:30 to supervise the movers, who were coming at 11. She was also right on time. The movers ALSO got there right on time, and there were zero issues. I was told they would pack my boxes for me and disassemble and reassemble my furniture, and they did! The whole move was completed in one day!

The reason I’m so shocked is because with my last host home, they were supposed to have the house ready for me to move in on May 1st. They weren’t ready on time, so I had to wait until the 3rd. Their residential services agency refused to hire a moving van, so we had to cram all of my stuff into their two SUVs. My mattress was strapped to the roof. The plan was to take all of my essentials on the 3rd, and go back for the rest of my stuff the next day. My providers had said they would do this with me, but for some reason they didn’t take that commitment seriously, and just randomly changed their minds about doing it that day because they suddenly decided they had too much else to do. It took several more days to get the rest of my stuff over.

Anyway, I’m being extra cautious about making sweeping statements like, “This is great!” but I will definitely say that the last two days have been great! It’s so different here, and I’m constantly being surprised by R just volunteering and offering me things, without me asking or expecting them. For instance, I’ve used my feeding tube for breakfast every day since it was placed seven months ago, because making myself breakfast requires too much executive functioning first thing in the morning. My other host home never offered or made it for me, and my mom expected me to get my own breakfast once I was in high school, so I just stopped eating it. R has asked what I wanted for breakfast, and has made me waffles two days in a row!

Another example is that my case manager originally told my first host home to layer my bedsheets and pads, so that when I wet the bed, I could just strip off one layer and get right back into bed. They never did this, and I slept on a bare mattress some nights because of it. My new provider immediately layered my sheets as the very first thing she did for me, without me asking.

She’s so matronly, in the best way. She’s super efficient and direct, but also so nice. She’s constantly giving out random hugs, and stayed with me in the basement and played Bananagrams to keep me distracted from a thunder storm that came through yesterday. My other host home just told me to go to the basement and left me there alone.

I’m still wary of getting my hopes up too high, but I’m taking things one day at a time, and so far, those days have been pretty great!

[shepandem]

I have a good news update about my host home! I get to move in with my new provider R on the 12th! I'm so happy!

My ABA therapist and I went to go and see her house for the first time yesterday. She has two dogs, two cats, hermit crabs, fish, and a turtle! One of the cats curled up in my lap like he'd known me all my life 🥰

I got to see my room, and she says I can choose what colour to paint it. I chose purple and orange for my current room, but I kind of don't want the reminder of where I am now, so I think I'm going to choose a light pink this time.

Knowing I have a tangible date for getting out has lifted so much metaphorical weight off my shoulders. I'm so relieved!

[shepandem]

Hello Shep and Em.

Can you explain the process of how you got into a host home?

I am thinking I want to do it. My current home isn't a good space for me. Host home, from how I've seen you describe it, seems like a good fit for me.

Good luck on your internet travels, and thank you.

Sure! This is a US system, so I don’t know what systems in other countries are like.

The things you need to start the process are:

- To have a diagnosis which impacts your ability to perform executive functioning/daily life activities to such a degree as to require support. This isn’t just autism; it can be ADHD, intellectual disability, chromosomal disorders, and a ton of other things.

- To be on Medicaid.

Once you have these things, you can apply for services through your county’s community center board. Just google “CCB for *my county*”.

The application process can take a bit of time, so keep that in mind. Like all government systems, it’s slow. I think it took at least a couple of months between when I first applied and when I began to receive services.

If you’re under the age of 21, you are still eligible for children’s services. This is important, because being in a host home requires a special waiver called the developmental disabilities (DD) waiver. There is another waiver called supported living services (SLS) but that only covers having carers come into your home during the week, not full-time round the clock care whilst living in a caregiver’s home. It varies from state to state, but in my state, people who received children’s services prior to age 21 could age into the DD waiver automatically. People who were already adults at the time of receiving services for the first time are automatically put on the SLS waiver, and have to apply and be put on a long waitlist to request a DD waiver.

The way I got around this was that I was in crisis, so my case manager applied to request an emergency DD waiver for me. I was denied the first time she applied, but the second time, I had been sent to a mental hospital for three days due to my situation, and that was enough to have the state approve the emergency DD waiver.

Even after the waiver was granted, it still took a month for it to go into effect, and it took my case manager an additional three months to find a potential placement for me, and another two months after that before we were ready to move in together (and in the end, they turned out to be a bad fit and I had to move to a different host home, but that’s a whole other story). In total, the time between being approved for the waiver and being moved into a host home was six months.

Still, I received SLS services for almost five years before switching to the DD waiver, and those were still super helpful. I got support with running errands, keeping my space clean, laundry, cooking, scheduling appointments, budgeting, and having recreational groups to participate in, and a one to one staff member to take me into the community to do recreational activities together. It was a very valuable experience.

[shepandem]

Today I’m setting myself a no-stakes challenge, more of an experiment out of curiosity, if you will. I’m seeing if I can go all day communicating with only AAC, no mouth words at all. I’m counting how many mouth words I say using a counter clicker, and I want to measure how I feel at the end of the day, to see whether it made any difference to my energy levels.

It has already made a big difference to my confidence. I have always had severe social anxiety around meeting new people and having to engage with them in my house, but the parents of one of my host home providers came to visit today, and not only did I have minimal anxiety, I was able to talk to them via my talker, contribute to the conversation, and be my amusing, witty self. They just left, and I don’t even feel tired or run down like I normally do after an hour and a half of being in the presence of strangers. I’m proud of myself!

I’ll report on my findings regarding word count and mood right before bed tonight!