This was sent to me by the people who sent Shiny home from camp last week.

This is the inside.

Remember these are the people not trained to wipe butts. Nor, apparently, to have any tact whatsoever.

I’m feeling very worn right now. This is not the kindly note they think they intended. It is salt in the wound.

DDS approved us this week…but can’t get a worker out here until 4 days before school starts, and he thinks I won’t get assistance very promptly. “We may not have any unallocated funds,” he said. “It has to go to the committee. You need a service plan. We might have to take from short term funding, we only got half the money we normally get. You might go on a waiting list.”

I feel like I’m watching Lucy hold a football. That help would be about 50-70 hours of respite per month (not $1000 worth that they told me earlier.)

My advocacy worker says there’s another program. It has a waiting list of up to two years to even get an interview. Only 3% of disabled kids get on it.  That one can provide up to $34,000 per year of respite and home adaptive improvements.

A parent who has been through the process asks who my worker is. I tell her the two names I’ve been given. “They both suck,” she says. I tell her the one I’m most likely to see first. “He’ll try to make it sound like you’re doing okay,” she said. “Just watch.”

I told her what was happening with us right now. She said, “Tell him. Most people try to make it out that it is not so bad.”

I tell her about the way I keep Shiny in her room. “DDS will tell you it’s illegal,” she said.

Honestly, if it’s illegal, fine. If I don’t lock her in her bedroom at night, she will create a danger to herself and others, and I will wreck my car with exhaustion. Parenting a child like Shiny you don’t get to take the high road, you just get to try to find the repellent parenting methods that cause the least harm for the most people in the long run. Someone else thinks it’s not good enough for Shiny, they can take her and try to do better. Because this is what I have and this is what I can do and that means she spends 90% of each day locked in one room or another. One of the rooms is her bedroom, which she loves. The other is my living room, which is huge and open and gorgeous and this is what I can give her, these two rooms. If I give her the run of the house, she climbs on me and then throws her head back into my face. Or slaps me. Or throws everything from the counter onto the floor into her brother’s reach.

I ask her if I should try to make Shiny wear clothes when he comes. “Let her do her thing,” she advises. “Don’t try to clean your house up too much either.”

As if.

So, maybe someday we will get resources, if state funding doesn’t dry up. If someone believes we’re that bad off. In the meantime I cobble together breaks here and there, sneaking them in, rationing them.

If we’d been told about these resources much earlier, we’d already have them.

But now I wait, like Charlie Brown, not really believing Lucy will keep the ball in place, but not being able to give up hope completely that this time things might get a little better.

Shiny’s main teacher may not be allowed to teach at the beginning of the school year because of a snafu with her license renewal. Which means she will start a new school with a sub. This fills me with no confidence whatsoever. God help me if I have to pull her out.

Until DDS approves, the most likely resource for Shiny to have after school care…. is from the same people who sent that note. Color me not impressed.