Monthly Archives: August 2013

In the desert

Posted on

So when Shiny was born, we did not go to Holland, but instead were dropped in the desert.  We eventually found a well, and managed to put together a dusty little life with just enough water to get by most of the time. There were drier times, and the occasional deluge, and for a little while, we had steady, frequent rain and things started to bloom.

Then, abruptly, there was a sandstorm. I woke up one morning to find that my well was gone, the garden covered with sand, my shelter blown away and the sun beating down. There were some jars of stored water, but not enough. And some of the jars I thought I’d set aside had cracks in the bottom, when I moved a jar i found the one behind it dry as a bone. I’d known there would be dry times, but I wasn’t prepared for how thoroughly the water had disappeared, how quickly.

I knew there was water across the valley, if I could just get there I’d be allowed to stay for a while, and we would be okay. But I had to get there.  Across parched earth, with a few jars to sustain me. And so I set out. “One foot in front of the other,” I thought. “I just have to keep moving, eventually I’ll get to the other side. Then I looked at a map, and realized it was farther than I thought to the other side of the valley. There was supposed to be an oasis on the way, but when I got there, most of the water was gone, I ended up thirstier digging for the water than I’d been just walking across the desert.

Weeks passed. Occasionally I came across a water seller, and paid for a cup here, a sip there. Just enough to not die. I asked someone for help, and she said, “Oh, hey, just over that little dune there, there’s this oasis! You can stay there for a couple of weeks, it’s wonderful, they have a pond and a cabana boy. You’ll have to go a little bit out of your way, but it will be fine. I took the map she offered me and was about to step that way when someone else said, “No, there’s another oasis even closer, and you won’t have to go so far out of your way!”

Grateful, delighted, and looking forward to a good long drink and a nap in the shade of a palm tree, I stepped over the hill, and saw a palm tree and what looked like a deep well…. I pulled up a bucket and began to drink. At first the water was clear and cold and refreshing. Then without warning my mouth was full of sand, and I looked up and saw the palm tree was made of plastic and the green oasis I was promised was just more sand. Someone leaning against the palm tree said, “Oh, just scoop some of the sand out, there will be more water… I did, there was enough for a few more swallows, even enough to put a little bit of water in a jar, but those swallows were bitter and sandy and I cried… no two week oasis, just another water stop, and the edge of the valley looked farther than ever.

I called out for help, and a woman came rushing forward, put her arm around me and said, “Over that hill, we have more water. And you can stay, and we will make sure you have water for as long as you need it.”

“I can’t walk much father,” I said. “I need water now if I’m going to stay in this desert. I’ve been thinking about leaving. I don’t want to, but I might have to.”

“Just over the hill,” she said. “Right there.” She pointed, and I could see the shimmer of water and tall trees.

“Okay,” I said, and kept walking. I could still see the water, the trees, but they didn’t seem to get closer. My arms felt like lead, my throat parched. I called out to find out if the water was there, and a man answered, “Oh, it’s two hills over, but they may not have enough for you. We might have to send you to another hill, and then it’s only if the people there say you can go.”

At this point I was almost to the edge of the valley… but the community which had been if not green, at least capable of sustaining us through the winter, had a sign up, saying, “Water shortage.” I asked the man, “But isn’t there something you can do?”

“There’s a guy over the next hill,” he said. “He might be able to help you.”

I trudge onward. Friends stop by and offer me a drink, just enough to keep me alive. The guy over the next hill is almost to the hill after that. There was a sign stuck to a cactus about how over the mountains there is a rainforest, how if you say the right words and talk to the right people and then wait for a while, they might build a pipeline and irrigate my home for good.

And if I’d known about those things before the drought, I’d never have had to march across the desert.

I will believe in the water when I see it, not before.

If one more person offers me a “water” bucket full of sand, I’m moving to a rainforest. Someone else can tend my cactus.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted on

013crop

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

014crop

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.

 

Ehlers-Danlos syndrome

Posted on

I find myself going through a lot of stages with grappling with this diagnosis. Most of them involve anger, rage, even… Not at the syndrome, but at how I was treated as a child. I keep flashing to things… like having pronounced leg pain and not wanting to walk, and being told I was “making it up for the attention”. I was four.  Being the slowest runner in any class… and being told I was just lazy and that I needed to “try harder”. I’d try harder…and my ankles would go out, and I would fall, and then I’d be told I had done it to get out of running, and that I was making it up.

“You’re so flexible.” Yeah. Great for party tricks when you’re a kid… as an adult, showing off that flexibility hurts every time. I guard everything, and become paradoxically stiff because I’m putting so much energy into holding myself together. It did not dawn on me, oddly enough, until I was in my 40’s, that this is different from how most people experience the world.

IBS… gut is made of collagen. Mine is wrong. IBS is common in EDS.

Allergies (see gut is made of collagen and mine is wrong…)

The stretch marks that riddle my body. The weird texture at the bottom of them.

My fingers… handwriting always terrible, told I wasn’t trying hard enough, wasn’t concentrating enough.  “You’re holding the pencil wrong”. I fix my grip, my finger stays for a moment and then bends backwards. I adjust to something that sort of works. I’m told my handwriting is terrible and I’m holding the pencil wrong. Typing is a godsend. Typing is easy. When I can type my notes, I can actually take notes because I’m not pouring every single ounce of attention I have into holding the damn pencil.

Fibromyalgia… except that unlike most people with fibro, I don’t have constant pain. But every other symptom. Oh, right, those are all co-located with EDS, which explains more than the fibro.

You know solarcaine? Yeah, that shit never worked on me much. Nor does Lidocaine, or novocaine… The doses they’d use to get something approximating enough numbness to do dental work were terrifying. The epidural would have been funny in its ineffectiveness if I hadn’t been in so much pain. It worked…for about 15 minutes. Then not. Oh look… EDS involves aytpical responses to medications. Huh. Funny, that. It’s not just being a redhead.

Going to physical therapy feels like whack-a-mole… we get everything aligned and something else pops out. Much of my time there is spent with the PT pushing my joints back into the socket properly. They’re not VERY far out of alignment… but enough to cause excruciating pain. And people wonder why I don’t want to move.

“Your cervix is very friable” says one doctor… it bleeds every time they do a pap smear. “It’s very sensitive” says another doctor… every touch causes contractions. I spent most of my periods as a teenager curled up in a miserable ball. “You have PID” says a nurse midwife doing a pelvic exam that causes me pain. No tests come back positive for anything, but I wouldn’t hurt if I wasn’t a “bad girl”. They give me antibiotics and birth control pills. The pills nearly kill me. They help the cramps, though.

“Your skin is so pretty,” gushes a drunk woman as I stand, age 17, waiting to float down the river for an event. I don’t know what to say. “It’s like velvet she says” and starts to reach towards me, the woman with her pulls her away. I am nonplussed. My “pretty” skin is also highly prone to rashes, scars a little funny, and I’ve had keratosis pilaris since I could remember. All those things are common in people with EDS.

“Your cervix was so fragile,” said the doctor, “That I couldn’t keep a clamp on it. Your uterus was falling apart as I took it out. I’ve never seen anything like it, and neither had my assistant.” Later, she says, “Oh, I see the problem. The stitch was tearing your skin.” I suspect that if she’d known the diagnosis at the time she would have stitched me very differently.

“Are you sure it’s not a psychological problem,” asks a well-meaning family friend who is chronically short on tact.  I stop spending time with him. I stop spending time with a lot of people.

“You should just go to bed earlier.” I wish. My body’s fucked up sleep cycle thinks that if I sleep before 1-2 am, I must be napping, and wakes me up after a couple hours. Interestingly if I lie down for a nap at 10 or 11 in the morning, it is easy to sleep for four to six hours. Sleeping hurts though… if I get enough sleep my body hurts more from lying in bed that long.  My goal is 2 am. But brain fog sets in and it is hard, hard to get up to bed sooner than 3 or 4. If allowed I can easily sleep for 8 solid hours if I start at about 3:30 am and am not disturbed. I have small children. Hah. “But if you just had more self-discipline….” And then I read “sleep disturbances are common in EDS.”

I spend my energy constantly in holding myself together. If I get distracted, I get hurt. If I am happy, I get hurt. If I exercise and am not scrupulously careful not to overdo it, I am toast for days.

The human body is 80% collagen. And mine? My collagen is all a little bit wrong. Welcome to the grand unifying theory of what the hell is wrong with me.

Riding the respite roller coaster

Posted on

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.