Riding the respite roller coaster

So I’ve been drowning a lot. And a local disability advocacy worker threw me a lifeline by suggesting Shiny be enrolled in a camp that does inclusion for special needs kids. I looked into it, they offered to do a scholarship for the first week, it looked like such a good idea that I paid out of pocket for a second week.

Shiny was excited. Great. It involved swimming and dancing and a lot of free play.

First day was fine, exhausting for me because I ended up doing a meat sort, but that was okay, I had 10 days of respite lined up, 9 hours a day.

The second day was wonderful up to a point… I ended up taking a long nap with Miles, getting things done. Hubby came home to a happy wife and a cooked meal and Shiny was tired but that’s okay.  The point at which it wasn’t wonderful was when her second week of camp (different camp) called and said Shiny would not be able to go because the camp was wide open and outdoors and there would be no way of keeping her safe in that environment. I was sad but wanted to enjoy the rest of the week.

Third day, I had an appointment in the morning that fractured our nap, the appointment was a dud anyway as we were going to have a plug installed near our fireplace and they couldn’t do it for under $800… But I was going to have a nap in the afternoon with Miles anyway and make a nice dinner… and then Camp called.

Shiny was refusing to wipe her own butt, and “their staff isn’t trained for that”. She was acting tired and didn’t want to participate, so I needed to come get her, she wouldn’t be allowed back.

That 10 days of respite.. had turned into 2 1/2. And was done.  Over.

I flipped my shit when I got off the phone. My mother went and got Shiny, and advocated for Shiny to return the next day for a shorter period of time. I called crisis services for the local county office of developmental disability services (DDS). There were a lot of phone calls and a lot of messages and I cried a lot.

Then I got a magical call back from the regional crisis intervention coordinator.

Shiny will qualify, possibly as soon as next week, for $1000 per month in respite funds.

In 3-6 months, because Shiny is currently “at risk” for losing her placement (i.e. if we can’t figure out lasting solutions that make it possible for us to care for her in the home without her damaging us, we will have to look at therapeutic foster care, I am THAT done), a new state program called the “K-plan” will kick in, and Shiny can be considered a family of one for purposes of applying for aid, such as SSI and Medicaid. Remember, we currently pay 1500 per month for insurance, which will drop almost by half January 1, but we have NEVER been able to have dental and vision coverage for Shiny, which has meant many thousands out of pocket.  We may also be able to get housekeeping help for the “extra” burdens that Shiny’s conditions create on the level of mess here. (Me taking time when I’m not keeping an eye on the living room often results in Shiny creating a poop disaster. Then I spend an hour or two cleaning up a poop disaster. So her effect on the house is twofold–without a break from her, nothing gets clean, ever, unless I do it after bed, and I don’t often have the energy to do it then because I’ve been dealing with her all day).

I got plenty of sleep and a break from Shiny over the weekend, two days in a row. By the end of the weekend, my co-host for the co-op saw me and was blown away by how much better I looked than the last 20 times she’d seen me. By Tuesday I looked in the mirror and said, “Oh, there you are!” to a person I hadn’t seen in years. I was starting to feel human. The level of devastation at having my two weeks turned into two days? I don’t have enough words to describe it.

But… with $1000 per month, Shiny can go to after-school care every day… at the special needs center where they presumably know how to wipe butts. No-school days will be covered. And there will be enough left over to allow some respite time on weekends as well, so hubby and I can actually spend some time together.

I am enraged at the shitty implementation of “inclusion” at the city program. But it got things going and helped grease the gears at DDS… normally there is a 3 month wait list, but they are expediting us. I could just about hear steam come out of the coordinator’s ears when I said that no one had referred us there, and I had learned of them by chance just this spring.

How very different her toddler years might have been.

Having just Miles around is a dream. He is so *easy*, and we get into a rhythm so nicely with each other.  I was so looking forward to having that…  And we will, it will just be a few weeks.

It’s like there’s still a rhinoceros sitting on my chest, but at least I know it will be leaving soon. And without us having to put Shiny into foster care.

It was something I hated contemplating, but I just didn’t know what else to do. She is abusive and violent and she will likely always be abusive and violent and my responsibility, and I don’t want my son to grow up bullied, and the fact that when she comes near I cringe and say “don’t hit me” is just sad. If she’s out of the house from the time she wakes up until dinnertime, we only have to deal with 2-3 hours per day and that I can do.  I can be the parent I want to be for her, if I”m not having to defend myself from her all the time. If I’m not pouring everything into just trying to minimize the amount of destruction she wreaks.

The morning of the day they sent her home, as I was getting her ready to go, she said, “Camping time. Oh boy. Can’t wait.”

I am still so angry with them.

Posted in Hearing and Language, Lessons for my kids, Life, Shiny, Special Needs.

Leave a Reply