Update

[vaxjedi]

Or how the day went from good to bad...

I was up late cleaning. I woke up and made it to work. And I made it to the meeting with Children's Intensive. The meeting went well, They listened. They understood. Miri tried to bite me in the middle of the meeting. And she knocked the screen out of the window in her room while they were here. Our rep at Disability Services said if we could get a doctor's note, he could get us an Air Conditioner for Miri's room.

And then it went down hill.

The sub-acute care center for chidlren called. They said they weren't set up for what we wanted to do involving monitoring medication or looking for signs of seizures. They said that they'd need a hospital for that.

However, when we last went to the hospital, they said that they couldn't take her because she was so young. So, she's too much for sub-acute, but not enough for the hospital.

Children's Intensive said that they would be making a decision. In a month. And they only can have 100 kids in the state of Oregon at a time. The whole state. We were told that Miri was borderline for their criteria because of her age. Older kids take priority.

And Miri lost it this afternoon. Had some behaviors she hadn't exhibited before. Eleri was completely burnt out by the time I got home. (I had to come home late because the meeting this morning had gone on long and I got back from lunch late.)

So, the state has left us in the cold again, and our local family and friends are having to pick up where we can no longer handle things. jennkitty has agreed to watch Miri next week.

We need it. If we don't find a solution soon, I am not confident in our ability to continue.

It's just never going to end. I am losing hope.

Comments

[purplepants.livejournal.com]

It's a sucky option, but you could always have her committed to an institution until she is eighteen or have her placed in a group home temporarily..

[vaxjedi]

It is an option, but I really want to avoid that as much as possible.

[arib.livejournal.com]

"committed to an institution until she's eighteen" really isn't an option in the United States anymore.

Nor do I think it would be a good idea in this case, IMO.

Also, they're dealing with the various institutions that would theoretically be taking Miri which, as vax said, they can't do right now.

[eleri.livejournal.com]

always have her committed to an institution until she is eighteen

How very 1950s. We'll send her away from family and friends for 14 years, and be able to go on with a normal life without the social stigma of having a disabled child.

[purplepants.livejournal.com]

1950's or not, it is an option for families who have profoundly affected children, like you do. It provides her the care that she needs--which, when parents start reaching the ends of their rope and resources, can start to fail--and provides you respite while still being able to see her and interact with her--it isn't uncommon for children to go home on weekends with family when primarily living at an institution or group home.

[eleri.livejournal.com]

Which is an *entirely* different kettle of fish than having a child institutionalized until they are 18. That's not even considred sound psychiatric practice anymore, except for the most extreme cases.

Suggesting short-term out of home care is one thing, suggesting someone have thier child committed for the rest of their childhood is just offensive.

[arib.livejournal.com]

Since of course, after being placed in an "institution" for 14 years (and if there's a place that will take someone for that kind of timespan, I'd be very surprised) she'll magically be "fixed" by her eighteenth birthday, and will be totally able to eintegrate into a world she hasn't interacted with.

Group homes and such tend to be short- to medium-term when dealing with kids, especially as young as Miri.

Another option would be some form of foster care. Of course, Miri's special needs would mean that the system would have a hard time finding any sort of placement for her that would last longer than a few months. Of course, she'd only need to deal with that until she's eighteen.

pfft.

[hopeevey.livejournal.com]

>>goodluckhugs<<

[arib.livejournal.com]

Something will present itself, unfortunately, it will probably take time. :-(

[anandav.livejournal.com]

*sends you and Eleri hugs*
Hoping that a solution will come soon.

[shangchi.livejournal.com]

I'm very sorry to hear this. Good luck.

[nuveena.livejournal.com]

*hugs*

When will she be old enough for hospitalization?

Good luck...