I am not a burden (Day of Mourning 2014)

I am not a burden. I need to repeat that, because the opposite is told to me too frequently, and digs in, and catches hold. I am not a burden.

I am autistic. I am disabled. I am not a burden. I am a person.

You were nine years old. You had a life ahead of you. Then you didn't. You were a person. Not a burden.

You were twenty-four, or ten, or fifteen, or forty. All of you, you had lives ahead of you. And all of you were PEOPLE, not burdens.

None of us are burdens. No matter what's said to us.

It's not okay that you were killed, that you were murdered. That your lives were snatched from you, just because you were disabled, just because you were different.

It's not okay, that people are saying that it is fine that this was done because you were a "burden" and that you made your family's lives too difficult.

It's not okay that people think that our LIVES are less valuable than theirs.

It's not okay that people speak ill of the dead, justifying the actions of murderers.

It's not okay.

I'm not a burden. If I were murdered, would they care? Would society just say, that she doesn't work, that she's just autistic, that she makes people take care of her, that she's not a real person?

When I'm kicked down and abused, am I the one at fault, or is the abuser? Is it because I'm autistic that I deserve it?

It's not okay.

Every time someone says that I am a burden, I need to step up and say that I am not.

Every time that someone says it was not a big deal to kill you because you couldn't speak, I need to step up an speak, because I have a voice, that you do not, because your life was prematurely ended.

Every time someone says that the parents lives are too hard, so its not unexpected for them to do these things, I need to step up and say that autism isn't about the parents, and murders are about those who's lives were taken. Because disabled people are people too.

And every day, I need to work to make autism, to make disability, to make being different in any way, something that is treated better by people around me. Whether on the bus, in a school, or at my home, I need to say, it is not scary to be around someone who is different, but it is important to treat them the way they need to be treated, rather than the way the average person is treated.

I am not a burden. You were not. The rest us of who are living are not either. I need to hope that there are no more of you, no matter how unlikely that will be at the moment, because maybe, hopefully, you were the last.

Nobody deserves to be killed by a parent. Nobody deserves to be killed because they are disabled. Nobody.

I'm sorry it had to happen to you.

Weighted Blankets

Weighted blankets are really powerful things. Maybe people have heard of Temple Grandin's squeeze machine (if you haven't, its quite cool), or maybe not, but very frequently deep pressure is something that regulates our sensory systems, and resets our bodies.

For those of us who are hypersensitive, for many of us, deep pressure is the one thing that resets us, or at least is the one that does it best. Our bodies hate most senses, they're attacks on our systems, but deep pressure, instead of being attack, calms us, protects us, and makes us feel safe. One of the things that is quite interesting about deep pressure is that it frequently helps those who are hyposensitive or seeking as well, because in both of those cases, they require increased sensory input, and this provides the increased sensory input. Deep pressure is the only area where all three of the sensory modulation areas seem to agree in enough cases that its worth defaulting to assuming it'll likely work; giving someone deep pressure is more likely than not to help them regulate better.

Deep pressure is the squeezing of strong hugs, the compression of joints when you jump, the weight of lying under a mattress. And this feeling, helps many on the autistic spectrum, with sensory processing disorder, with anxiety disorders, and even without any diagnoses, calm down, think better, sleep better, and generally function better.

For some of us, this is necessary, things that calm our sensory systems are the only way to be able to manage to get through daily life activities. For many on the autistic spectrum, sleep is a huge challenge; the same thing holds here.

So we get back to weighted blankets. Weighted blankets are, as it sounds like, blankets that are weighted instead of just being fabric, while still being functional as a blanket rather than stiff or uncomfortable. Sleeping with these blankets allows those of us who need sensory calming to sleep better; I know of multiple cases of melatonin being stopped after a weighted blanket was used while before it was required for sleep. It also allows our days to function better because we're starting from a more de-escalated state sensory-wise at the beginning of the day. Throughout the day, they can be used as a blanket might, wrapping up on a couch while working. Again, it causes reduction of sensory-overload even before it hits, holding it off or even preventing it if it reduces it enough. If overload, meltdowns, and shutdowns occur, they tend to be shorter if the blanket is provided, because it gives the sensory needs without someone constantly worrying about providing a type of input that can be difficult for people to provide for themselves or others for anything more than a very short period of time.

My weighted blanket is one of the largest coping skills I use. If I go somewhere for a weekend, I deal with carrying around a 24 lb queen size blanket. It's not convenient but its worth it. I frequently can write when I otherwise wouldn't be able to only because of my blanket. It helps me through many overloads. It helps drastically with my sleep. It's a very valuable tool, enough that I'm working on getting another blanket.

The downside of weighted blankets is that most places that sell them are expensive. However, the other option to buying one is making one. What I'd done for mine was make it. If you sew, have a sewing machine and have time free, its not bad to make one, just time consuming

The method I'd used might not be the most efficient at times; but it seems to have generally been a good one. The basic idea is that that you want evenly weighted pockets, all about 4 inches x 4 inches (that's been found to be the right size), that add up to the proper weight. The proper weight will generally be 10%+1 lb of the body weight of the person who will be using the blanket.

Instructions

1. Determine size and weight

   I wanted a blanket that I could both completely wrap around me and would work for two people sleeping. I thus decided I wanted a blanket about 55-60 inches wide. As my boyfriend is 6'4", I decided to make a 80" long blanket. For a 43" wide blanket (twin size) its recommended to use 10% of body-weight + 1 pound. Because this is larger, I'll use an increased weight, probably about 23 pounds instead of 15 pounds.

2. Gather equipment

   In order to make this blanket it required I borrowed things such as a sewing machine. Necessary equipment includes

   • Sewing machine
   • Measuring tape, pins and other sewing supplies
   • Kitchen scale for measuring weights
   • Butter knife
   • Funnel (can just be paper)
   • 2 cups for measuring plastic in and pouring into that first cup.
   • Tweezers or pliers
3. Gather supplies

   In order to make my blanket, I needed to gather up supplies to make it out of, including trying to minimize prices. Optimal design seemed to include having four layers of fabric, to increase durability, the outer shell being removable for easier cleaning, and weighting with poly-pellets.

   • Poly Pellets for weight

     Online research suggests that poly pellets tend to work best if you don't mind the increased bulk in using plastic. This wasn't an issue for me and durability matters much more to me than how bulky it is anyways. You can get poly pellets at craft stores. If you care about price, don't. You can get it drastically cheaper on ebay. I ordered 30 pounds of plastic in two 15 pound increments for $2/lb shipped.

     Some people suggest using beans, be aware that any food product can get moldy, and has major issues being washed (as dried food products rehydrate when put in water). Either poly pellets or aquarium rocks that you are sure won't hold water if its washed tend to be your best bet for a filling material - poly pellets would be my suggestion, as the increased bulk is actually something that is nice to me, and is not nearly as large as people make it out to be.

   • Fabric

     You want durable and comfortable. If you don't get distracted like me, a duvet cover for it is a good idea, and allows you to only worry about durable for what you are building the pellets into. If you don't want to, or expect to, manage that, then plan on that. I used sheets for my fabric. The convenience of sheets is very high.

4. Measure fabric

   While nominally I had 60" wide fabric, one queen sheet, and two full sheets, truthfully, the 60" fabric was actually 69" wide. This was far more over its nonimal size than I expected, and its relevant to know that now.

5. Wash fabric

   If you prewash fabric then it'll shrink before you make the blanket rather than shrink unevenly after.

6. Cut and hem fabric

   These are large peices of fabric. In order to cut them straight I used the method described here. I found that using a small pair of pilars worked drastically better than tweezers - it was easier to pull straight, and thus I was able to pull out longer strands. Ripping the fabric also works.

7. Sew two peices of fabric on 3 edges, leaving one open for filling.

   Be careful while doing this that your fabric lines up. In my case, it one of the sides wasn't actually straight - I left that side open so I could patch it at the end.

8. Flip the fabric inside out into a giant pillow-case like thing
9. Measure and mark every 4 inches down the sewn bottom
10. Sew columns

    For each column, first measure out and mark a few point on the column to help you keep it straight, then sew using the sewing machine. Because I was filling mine from the side, I had 20 of these.

11. Calculate wight per pocket.

    4"x4" pockets are recommended. Each one of these should have equal weight. Calculate the number of pockets your blanket will have (mine will have 340 pockets), and divide the weight you want by the number of pockets. I'm ending up making about a 25 lb blanket because it is so large, and will put 34 grams of plastic in each pocket.

12. Measure plastic and put it in each row.

    Measure equal weights of plastic and put it in the bottom of each row. Even though you can do it without a funnel, use the funnel, it both increases the speed to mess ratio, and is a useful marker of how far along the row you've gotten.

13. Pin the pockets shut

    Measure 4 inches for the height of the pocket, push all the plastic down (with the butter knife), and pin it shut.

14. Sew along making those pockets

    This is a very slow process. This is also where a butter knife comes in handy. In order to not have the plastic pellets get caught and stop the sewing machine, you need to kepe them out of the way. The best way I found was to go pocket by pocket and use the flat side of a butter knife to push them down into the very bottom for each pocket. When you inevitably get a pellet in the foot of the sewing machine, pick it out with something small - likely the tweezers or piliers you used earlier.

    For the first two or three rows its easier to pass the weighted section through the sewing machine. By the time you're half done its far easier for the weighted section to be supported next to the sewing machine.

15. Repeat steps 12 through 14 for each row.

    If you want to fill the last row you can. Do be aware though, that its far more likely than the other rows to cause a broken needle if you didn't give sufficient room for the seam. I started filling the last row, then broke the needle, and gave up on it.

(btw, for just linking to the instructions and not scrolling down, if you're saving a link or such, click here)

A shower

The water turns on, and you wait for it to heat up while you do your exercises for your ankle. Counting 20 of them. That's how long it takes to get the water to warm, is twenty times onto your toes and back, and doing that helps with your ankle strength. Then you step in.

You were careful to bundle your hair first. That way your hair could stay as dry as possible. But without a good stream of water you have to be careful still. You don't want to let your hair get wet. Then you have to deal with it drying. So you are careful about where you stand, and where the shower head points trying to be as careful as possible.

Lots of little beads of water, hitting your skin. You feel every one of them. They're very uneven. You're very aware of every bit of how uneven the temperature of your skin is too. It's not comfortable. The shower pressure knob has fallen down again, and you turn it up. It's not as bad at full pressure, there are more little beads of water now. It's less uneven. It doesn't feel so wrong.

Even closed the shampoo bottles are noticeable, and the smell is getting to you, especially combined with the heat. If you turned the heat down, your entire body would be in pain, both in terms of muscles tensing into spasms, and in terms of the beads feeling like little knives cutting into your skin. So instead, you let your head rest against the side of the shower, as you become more light headed, the smell overtaking you, making you more and more nauseous and your head start to pound.

But, you need to get clean. So, you force yourself up, and put some of the body wash in your hand. This is another place you're careful, only getting the hypoallergenic stuff. Other things the smells stick around afterwards, and the feeling of the shower that lasts after is increased. But, you wash yourself, as quickly as you can, carefully holding yourself up. You need to be careful that you're fast, but at the same time, you need to be careful not to fall over with the nausea, lightheadedness, and vertigo, that has set in. Rinse. The pressure is more noticeable the longer you're in here. You need to get out, but if you're not clean the entire thing has been a waste. You're almost done. Make sure to get through it. Face, okay, clean your face. Because washing your face in the sink is even harder than this. Any water from the shower falling on your face feels like an attack, so carefully control it with your hands. Get your face wet, wash your face with something carefully unscented. Go to rinse, and accidentally put your face in the stream, it hurts, it feels like your eyes are being attacked. It's okay, it's okay. Make sure your hands are rinsed, and splash your face with your hands, over and over and over again. And after your are sure its clean of any of the soap-stuff another three time. Eyes still won't open because they don't trust it. Just carefully clear the eyes with water and your hands, show them its okay. Open your eyes. It's fine.

By this time you're wobbling, you don't trust yourself to stand. Are you clean yet? Finish quickly if not. Get out as fast as you can. Grab your robe and put it on. Trying to actively dry would be like ripping your skin off, so instead you have to make due with drying with a robe and time.

Go to walk upstairs, but now you've lost the ability to see. It's been too much. You managed to get out without jumping out in order to vomit this time. That's not always been the case. But that doesn't mean you got out without other...challenges? Okay, you want to get up to your bed, because you feel like you're going to vomit, you can barely understand what ground is, and now you can't see. So...feel around in front of you, you know your house. Find the railing to the stairs. Hold careful as you walk up the stairs. The railing changes most of the way up the stairs. Try to figure out how to deal, and just crawl the way up the stairs then. You make it. Get back up, and feel the way to your room. Find your bed, and fall onto it. Head pounding, you feel safe now.

You have somewhere you can just dry now. You can wait it out. You can let your head stop spinning, and stop pounding and go back to normal. You can let your stomach calm down. You can let your sight return to normal. Pull your blanket over you, despite the risk of it getting wet. Now, its just the time to get over all of this. Now its just recovery.

Vision comes back reasonably quickly. The others, take a while. If you try to rush drying then it feels like you're attacking yourself. If you try to get dressed before you're done drying, then your clothes don't stop attacking you even after you're done drying. But its better within the hour.

Except, there are still aftermaths. Your skin still feels wrong. It feels almost disconnected and overconnected at the same time. It feels too rough. Every touch that is made you feel for so long after its made that you don't even realize when its stops because it just keeps going and going and going. And its not pleasant touch, its that creepy crawly this is a bug crawling on your skin and its wrong, except multiplied. It's the feeling the bad part of tickling with out any of the parts that make you laugh, and it doesn't stop, it just keeps going and going and going, no matter what is touched. And then there's pain, pain from touching simple objects. Pain from touching something as simple as paper. Discomfort from touching the air. The only way to keep is under control at all is constant motion. Then those pains and discomforts and the creepy crawlies of every last hair, and cloth, and misguided object, and thing you bumped into, are overwhelmed to some degree.

Things aren't always easy. But, its what's needed.