Please Don’t Touch My Daughter’s Wheelchair

I have a teenage daughter who’s been in a wheelchair her entire life. She’s “partially ambulatory,” meaning that she can feel and move her legs, but she doesn’t have full extension in them, and cannot use them in a normal manner. In smaller, familiar spaces, such as at home, she walks on her knees using special “knees shoes” to protect her legs. But, everywhere else, she uses her wheelchair.

Everywhere we go people are always trying to “help” with the chair. Either they try to help her by pushing her (often without permission), or help me when lifting it into and out of vehicles, storage, etc.

Here’s the deal:

We understand that you’re only trying to be helpful. Yes, I know, you were raised that way, and your Daddy would lay you out if he saw you letting a woman or young lady do anything resembling heavy lifting or manual labor. Or, maybe you think it’s your duty, as an able bodied person, to assist her in whatever way you deem necessary. But, to us, as a family, other people touching my daughter’s wheelchair is the equivalent of other people touching my daughter.

Seriously. Just don’t do it.

1. It’s creepy. When my daughter is actually using her wheelchair it becomes an extension of her body. To her, you laying hands on that wheelchair feels a lot like you laying hands on her shoulders, or hips.... or just sticking your paw right up between her knees. If you try to push it from the back she will become very upset. If you try to pull it from the front don’t be surprised if you get hit, kicked, or bitten. Seriously, this has happened.

2. It’s condescending. All my daughter wants is to be treated like a normal person. Yes, there are times when you will need to take her physical limitations into account, but overall, my daughter wants to be treated like any other girl her age. You may see her struggling to open a door, but the overwhelming majority of the time she doesn’t want you to drop what you’re doing to open it for her and push her through. First of all, this emphasizes that she’s different. She doesn’t want to be different. If she needs your help she’ll ask for it. Her mouth, and the language centers in her brain work perfectly.

Second, and this goes back to the Creepy Factor, if you held the door open for someone else’s teenage daughter would you also put your hand on her back and push her through? And if you did, how do you think she and her parents would feel about that?

3. When she’s not in her wheelchair we all prefer that only a member of the immediate family handle her wheelchair. Again, this is an extension of her body. Only, at this point, the Creepy Factor is removed and replaced with the Respect Factor. Her wheelchair is actually more fragile than her legs are. It’s easier to break the chair than it would be to break  her legs. And yet, people treat it as though it was as tough as cast iron.

No, you can’t just toss it into the back of the truck or leave it unsecured. No, you can’t force it to fit into a vehicle or closet if it doesn’t actually fit.

It’s an old Ultra Lightweight. It has metal parts, but it also has plastic parts, cloth parts, sponge parts, and parts that come off. It has parts that can crack, tear, or become damaged by liquids, heat, and cold. It’s not a big deal to you if the polymer spokes crack, but’s it’s everything to her. To her, and her mobility, it’s the same as breaking an ankle or knee is to you. Would you be so careless if her flesh legs came off and needed to be loaded into the vehicle?

We don’t expect you, who is not her mother, father, or sister, to view her chair this way as a matter of instinct. But, we do view it this way, which is why we all prefer that only a member of her immediate household handle her chair when she’s not it.

We’ve already had to replace parts on her wheelchair because some helpful people have handled it incorrectly. She’s on he 3rd set of wheels, 2nd set of arm rests (the number one reason she doesn’t use them anymore), and has had the ball bearing seats replaced more times than I can remember. She is currently awaiting a new set of foot rests...because the hinges and clips do actually break when you try to “make it fit” in the back of a minivan by slamming the door shut to force it in. She’s decided that her advanced project for Sewing Class is going to be wheelchair seat covers because they are always getting torn by people folding her chair incorrectly, or stained because they shove it out of the way and into things like dirty oil cans or by the over-full trash can.

4. The appropriateness or lack thereof, is something people never consider. She has two “besties.” And just because she doesn’t completely freak out when one of them turns her chair to face something they want to point out to her, doesn’t mean that she feels that way about everyone.

For one little girl to jostle another little girl in the course of playing is okay. For a grown man she isn’t even related to to do it is not okay.

If I, her mother, suddenly take control of her wheelchair in order to do something like take a shortcut up a curb, that does not mean it’s okay for you to do it. It’s the equivalent of grabbing her by the arm and forcing her in the direction you want her to go. It’s okay for me to do it. I’m her mother. I will physically redirect my able bodied children too. Though, even then, there is a limit to how much I can physically redirect her before it becomes abusive.

It is not okay for you to do this. Ever. If my 16yo able bodied daughter started walking up the handicap ramp instead of taking the stairs would you pick her up and carry her up the stairs? To us, it’s the same thing.

5. Personal space does not decrease just because someone is in a wheelchair. Seriously people. If anything, it increases. Her requirement for a wheelchair does not give you permission to get mittsy with her. Leaning in and around her when she’s trying to move, even if it’s to “help” her is what we call a Bad Idea. She requires more room to move than your do. Likewise, reaching over and grabbing her chair, putting your hand up against her body, to pull her over to a table is still putting your hand up against her body. I don’t know how many times people have done that and then gotten offended when she gets upset.

Of course she got upset. She was just touched inappropriately. If you ran your hand down my older daughter’s leg and tugged on it to get her to come closer to you chances are you’d get hit, or, at the very least, screamed at. And then you would meet her dad... who would be less than happy with you. So, don’t be surprised when her younger sister reacts to the that situation in the same way. Her personal space is no less than her older sister’s just because she happens to be in a wheelchair.

6. I don’t care about your ego. I’m tired of my daughter and I “tiptoeing” around other people’s egos because they want to feel good about themselves by “helping the poor little handicapped girl and her mother.” My daughter, her mobility, her body, and her sense of safety are far more important to me than your ego. If you try to help me or my daughter with her wheelchair, and we ask you to stop then stop. Right then, right there, just frackin stop. If you go beyond that and continue to try and “help” or “be a gentleman” then you are the one that’s in the wrong. And I will let you know it.

So, please, don’t touch my daughter’s wheelchair. Ever. I know you’re trying to be polite, and you honestly believe that you know what you’re doing. But, don’t be surprised if you spontaneously start to bleed or need bones reset if you lay hands on it.

To us, the entire family, laying hands on my teenage daughter’s wheelchair is the same as laying hands on my teenage daughter. 

Just. Don’t. Do. It.

A is for Autism... Now, get off my planet!

It's that time of year again. April is upon us. It's Autism Awareness Month. Again.

I have three kids on the spectrum, two of whom are now adults. I have to admit that part of me wishes the whole awareness thing would just go away. Haven't we pretty much saturated the world with awareness by now? Shouldn't we be moving on to other things at this point... like maybe Autism Understanding Month?  I haven't met anyone in the last several years who hasn't heard of autism. What I have met are hundreds, no thousands of people who don't actually have a clue what it really is or how to deal with people on the spectrum.

Oh, there are people who think they know, and even think they have the cut and dry one-size-fits-all answers. These are the people I would like to eject from the planet. When it comes to autism, one-size-does-not-fit-all. That's one of the things that makes Autism so incredibly difficult to treat. Every single individual with autism is exactly that: an individual. What works for one may not work for another. What one thinks or feels may not be shared by them all. In fact, it very rarely is. If ever.

This morning I published the article "Autism and Geek Culture: The benefits of fandom". I got an amazing response that was, for the most part, very positive. Quite a few people thanked me for it. But, there are always those people...

One lady private messaged me to tell me that I had done the entire Autism Community a horrible disservice by promoting the idea that people with autism should be allowed to throw themselves into their obsessions. This, right after my niece, who is also an Autism Mom, told me about how people at certain meetings tried to  essentially bully other parents into depriving their affected children of TV and video games.

These are the kind of people that need to go. This is the kind of thinking that needs to stop. This "My Way - No Highway Option" sort of thinking and acting is doing more harm to the Autism Community than any single recommendation or point of view out there. It's like the people who insist that Autism is caused by mercury and that's that. I had all of my children tested for heavy metal poisoning and guess what? Nada. In fact, one of my kids was suffering from a slight copper deficiency. I had no idea that could be a problem, but a single injection of special vitamin cocktail that would allow her to retain copper was all it took to settle that issue.

And she was still autistic.

Does that mean that mercury doesn't cause autism? No, it just means that it didn't cause my kids' autism.  But going around shouting at me that I'm neglecting my children because I haven't gotten them Chelation therapy, when I know for a scientific fact that they don't need it, doesn't help. In fact, it makes you look like fool. It also spawns Bad Ideas and Bad Situations, were young parents find quacks who are willing to do the the therapy willy-nilly and kids end up dying for no reason.

And yet, some people's children have been relieved of their autism symptoms through Chelation and the relief of heavy metals poisoning. One size does not fit all.

Likewise, telling a young mother that she has to deprive her child of television and video games can be just as ridiculous and narrow minded. Geek Culture helped my children, and continues to do so. That's the entire reason I started writing about it for that publisher. If that's not a fit for you and your family that's fine.

As for me and house, we are Whovians. If you have a problem with that get off my planet.

And as for April... Welcome to Autism Understanding Month!

Those Who Get It

Have you ever had people look at you funny when they invite you and your kids to ‘come by the house any old time’ and you inform them that you would have to go over first, then gradually start bringing the kids over a course of time? They don’t understand. They don’t get it that just because their house is safe for their kids doesn’t mean it’s going to be safe for yours. Just because their kids can go to new places with no problems doesn’t mean that yours can. And when you try to explain it to them they blow you off. You can see it in their eyes; they think you’re being over-protective or that you’re blowing things way out of proportion. Maybe they think you’re trying to come up with an excuse not to go.

Here’s the deal folks. It’s no excuse. I rarely take my kids to someone’s house if I haven’t been there before. The only time I ever have is when I know the people who own the house and I know they would understand my kids. Even then, my husband and I take turns keeping a close eye on them. Things can get out of hand really fast with my kids. The kind of out of hand that may require a visit to the emergency room.

So, tonight, when we were leaving a friend’s house, and I invited the lady of the house to come over to my place with the kids sometime, I understood the look in her eyes. That half haunted look. That fearful look as she told me she would have to come over by herself first because she’s never been there. Then, and only then, could she start to bring the kids over little by little. Her kids have various special needs too. But, just because mine do as well doesn’t mean that my house is safe for her kids. She will need to inspect, point out problems so they can be taken care of, and negotiate ground rules for visits to my house.

I get it. Believe me I do. And the last thing we want to hear is “Oh, they’ll be fine.” When I hear that it’s a red flag, and it sends me running. It means that person I’m talking to isn’t likely to take any of my kids’ many problems seriously, and that can result in tears, if we’re lucky, to injury, or even death. I’ve been in that situation before, having to explain to the ER doctor why my 6-year-old is in hypertensive crisis. Or why my 3-year-old needs her stomach pumped while they prepare the surgical suite to remove a portion of her intestine in emergency surgery. Or explaining to the cops why need to start searching RIGHT NOW.

So, if I step on a few toes, or hurt a few feelings, or lose a few ‘friends’ it’s a small price to pay for the safety of my child. And if I have to wait a few months to have a friend over with kids in tow it’s worth it for the safety of her child.

And if you don’t get it, go stuff yourself.

Today is Mother’s Day here in America. Therefore, I want to talk about cameras

It turns out that if I want to make a living at being a journalist I have to be a photojournalist. Gone are the days when every Louis Lane has her own Jimmy Olsen to tote the rig and take the picture for her. Not that I’m anything resembling a ‘Louis Lane’. I don’t write about politics, and I rarely cover breaking news. I’m one of those silly little people who is proud to be a fluff writer. I don’t do investigative writing and I stay away from controversies.

Almost a good shot, but my camera wouldn't focus when framed right.

Because of this I’ve been putting off getting an expensive professional grade camera. I’ve been deluding myself into believing that my little pocket camera is good enough. Recent events have shoved me out of that delusion.

My tiny little town recently suffered a tragedy. A historical landmark burnt to the ground. A landmark that we, as a community, are very fond of. As the only representative of one of my main publishers in this entire area I went out to cover the story. And this is what I found...

My little pocket camera doesn’t do so well taking shots of fire fighters in action or filter out the sound of circular saws when in video mode. I can’t tell the spokesman from the fire department to make the guys in the background stop what their doing while he addresses the press core about the fire they’re still wrapping up.  I can’t make the crying child stand still, or get the dog, who’s running through traffic to get the child’s side, to pose for a shot. I can’t get the crowd, who came out to mourn the loss of the landmark, to stay still.

Interesting picture, but the lighting sucks. 

This has been coming for a long time; this frustration with my camera. It’s actually been building since before I got it. I knew it wasn’t going to be good enough for my needs, but it was the best I could afford. I’ve put up with taking 5 times longer to get a shot than I should have to, not getting shots that could make me money simply because my little camera didn’t ‘bend that way’, and having to disregard entire video segments because the sound was screwed up. I’ve gone out of my way to take pictures at the right time of day because my camera is fickle about light. I’ve missed some shots entirely because there was absolutely no way to get my camera to focus, only to find out someone else took the shot from a lesser angle and made a mint.

I have children to feed and bills to pay. My publisher pays up three times more for articles accompanied by original photos and video. I’ve done the math. I need a new camera. So, if there’s a Mother’s Day faerie out there somewhere, could you please send me a Cannon Rebel Eos T3 with level 1 lens kit and a tripod? Please?

It took me an hour to set up this shot and wait for the light.

I want it for Mother’s Day... or my birthday, or my unbirthday, or just because. I want a camera that does what I need it to do, when I need it to do it. I don't have time to wait around for the sun to change angel. It does me no good to see what could be a great shot, only find out that I have to choose between the right framing and focus. When I miss a shot by a split second I miss the shot entirely, so I need a camera that can take 3 frames per second. I'm not just trying to record my children's childhoods here. I'm trying to finance them.

Has The Baby Become The Bathwater?

Today, April 2, 2012 is the 6th annual World Autism Awareness Day, as ratified by the United Nations council. In fact, here in the United States the entire month of April is Autism Awareness Month. Now, some will ask why so much attention is being given to this. The answer is simple.

Autism is quickly overtaking the human race. Not slowly. Quickly.

Yes, I know, that sounds like an exaggeration. But here are the facts: 50 years ago autism only affected 1 out of every 100,000 people. 30 years ago it affected 1 in 10, 000 people. 20 years ago it affected 1 in 160 people. Last month the Center for Disease Control (CDC) announced that it now affects 1 in 88 people. 

That means that in just two generations the numbers went from 1 in 100,000 to 1 in 88.

Many scream and yell (or simply whine) about the numbers being skewed by the new diagnostic routines. They will point out that 50 years ago we didn't have a very good understanding of autism and so only the most sever and obvious cases were diagnosed. That argument only holds a thimble full of water. Why? Because the number of severe and obvious cases have increased by about 5,000%.

Have we gotten better at detecting all levels of autism? Yes, we have. But, even if you remove the higher functioning forms from consideration the number of sever cases has exploded, not by folds but by magnitudes.

Most people in my generation in the US learned about a phenomenon called Super Evolution in basic high school biology (now being called 'rapid evolution' because creationist have co-opted the first term to their own illogical ends). The phenomenon was explained to students using the 'chimney moth model', which was a real super evolution that happened in Europe. An entire sub-species of white, nocturnal moths changed into black daytime moths in less than 5 generations. For the Chimney Sweeper Moth, this was a good thing. It saved the sub-species from being wiped out by birds that preyed on them... namely pigeons.

But, not every super evolution turned out so well. Scientific history is riddled with incidence of super evolutions that resulted in the end of a species. Countless cases where a species took a genetic left where they should have taken a right.

How does this relate to autism? Anytime a species develops a significant change in it's biology that marks it as having a major and distinct difference from its predecessors in less than 200 generations it's a super evolution. Autism is a major and distinct difference, and it's overtaking the human race in so quickly that within another few generations those without some form or level of autism will be in the minority. Mathematical models say that it will only take one generation... the one that is being conceived now. The children born today are in the vanguard of a new human race. A human race in which the average person displays a significant number of autistic traits.

But, how does a super evolution happen? The one thing that is consistent in every case of super evolution is that the species in question was influenced by an extraordinary outside force. It was a matter of "adapt or die". In the case of the chimney moths it was the presence of human beings, specifically human cities. They only got the name after their super evolution, because of their super evolution. Before that they were simply regular old run-of-the-mill coastal moths. What happened was people built cities in the moth's native habitat, which at first was no big deal. In fact the moths thrived on the cities and bounty of food the high concentration of humans brought with them.

As this concentration became denser and denser the moths found homes on the rooftops, specifically on and around the warm chimneys of human fireplaces. But chimneys produce soot, which is black. White moths stand out against that black and are easily noticeable. This became a major liability to the moths when something else began a boom population living off the human cities... pigeons. Pigeons, and other birds, love human cities for all the tasty discards we leave behind. Pigeons also like to eat bugs, which human cities attract en mass. To a pigeon moths are juicy and tasty treats that prove an immense amount of protein. Moths are to a pigeon as a t-bone is to a redneck.

So, the moths had to deal with this boom population of flying predators. Actually, the flying predators dealt with them. The birds ate all of the white moths, which were easy pickings on those black chimneys. But, mutations happen. A few grey and black offspring had been born to the white moths. Normally this wouldn't have made a difference in the overall genetic condition of the moths as a race. The black moths may or may not have mated and passed on their genetic profile, but the moth population was overwhelmingly white... until the birds ate all of the white ones. All that were left were the black ones, that hid well against the black chimneys. Birds hunt by sight, and the black moths were essentially invisible to them so long as they didn't move. The ones that did got eaten, and their genetic stupidity was removed from the moth gene pool along with the white winged moths that had just perished before them.

I don't remember specifically why they turned into daytime moths, but I seem to remember that it had something to do with the Viceroy Effect, which is where one species begins to mimic the look or behavior of another to avoid becoming dinner for a common predator. Typically the first species mimics a similar species that is poisonous to the predator. In this case, it would be a colored nocturnal moth mimicking a daytime butterfly, many of which are poisonous to birds in the affected regions where the chimney moth super evolved.

Again, what does all of this have to do with autism? Look at how much the world has changed in the last hundred years. Look at how much, we, the human race, have changed the world ourselves. And it isn't any one thing, as some people would have you believe. It isn't just one thing or another. It isn't just mercury or genetics. It isn't just sociological changes or pollution or diets. You cannot change a living environment as drastically as we have in the last century and not expect a significant change in the population that dwells in that environment. Especially when you are removing or suppressing the biological nature of the population's regular breeding habits by changing the conditions for survival.

A hundred years ago the strongest and healthiest mates were still preferable. Men who could work the hardest and longest and women who could bare the most children and had the most endurance for mundane tasks. Now we look for mates, on both sides of the coin, who work the smartest, and the amount of physical labor involved in earning a living has been reduced dramatically. It's not like the need for strength is gone, but now we live in w world where thinkers are king. Our societies have developed so that we emphasize and reward specialized thinking.

If there is one thing that autistics excel at it's specialized thinking. We have created a world in which people with autistic traits are the ideal mates. This spreads the genetics far and wide which creates a massive pre-disposition to problems arising from environmental factors that trigger further mutations. Add in the fact that these genes are being reprocessed and magnified by several hundred percent with every passing generation as the global society changes to include more and more technology, thus more and more specialized thinkers, and you no longer have a snowball or what some people are calling an pandemic. You have an unstoppable landslide.

You have a human super evolution.

Can it be stopped? Maybe it could have once upon a time, but that time is long gone. Short of an apocalyptic event destroying modern society as we know it, it's too late. The genetic baby has already become the genetic bathwater.

I'm not autistic, I'm merely 'different'

Are you one of those people who say that higher functioning forms of autism are not a disability, they're merely a 'difference'? If so, I have great news for you! The fine people at the American Psychiatric Association (ASA) agree! They've recently released the proposed changes to the diagnostic criteria for autism for the Diagnostic and Statistical Manual 5th Eddition (DSM-V), and all of those who are merely 'different' will no longer qualify for a diagnosis of Autism Spectrum Disorder (ASD).

My children, however, will still be autistic. So, once these fine rules take effect I'm going to start bitchslapping people for telling me my daughter's problems are just bad manners, poor parenting, because we homeschool, or I'm making them up, because, after all, you, or your kid, was "diagnosed with that too" and you, or your kid, are merely 'different'.

Really? Have you not read the Letter to Grandparents? (Click here stupid)

My kid is different alright. She's different to the point of being disabled. My child is probably going to need supports for the rest of her life. Oh wait... I have TWO minor children with autism. One is very obviously autistic. After 5 minutes of talking to her even a complete stranger can visibly see there's 'something wrong'. The other one though... not so much.

That one is still going to be considered autistic after the new criteria go into effect. I've already talked to her doctor about it. He says the only change that he can see will be a change in formal diagnosis from Asperger's Syndrome to moderate ASD. Oh yeah, she's being downgraded. Why is none of your business.

What is your business is the load of hell you're going to get from me and people like me if you keep this "it's only a difference" stuff up after the DSM-V is released. The people who are merely 'different' will have been weeded out.

Unfortunately, some people (both kids and adults) who actually need help will be weeded out right along with you. But, take heart, your inscesent whining paid off. Your image will be protected. Meanwhile, my friend's kid, who is one anal retentive trait short of an ASD diagnosis is going to fall through the cracks. His parents will start, and actually already have started, scrambling to figure out a way to get him the help he needs so that he can be something resembling self-suffient as an adult so as not to become a welfare burden on your tax dollar. Oh wait... it will be you kids' tax dollar. Nevermind that at least half of those kids won't pay taxes because they won't have jobs... because they're 'different'.

Am I mad? You tell me. No, I'll tell you: I'm fricken furious!

Go ride your tricycle.

Tricycles and Semi Trucks

To those who think they 'know' what my life is like becuase they've 'met' a person with autism... to those who think they know because they know me, and have met my children... especially to those who've yet to have children of their own...

There is a point when a child is only 5 weeks old, when the new has become painful. When you're woken by a cry for the thrid time that night, and it's only midnight. When you feel like you will never be allowed to sleep again. When you think bright yellow cottage cheeze-looking poop is the worst thing you have ever smelled in your life and you don't think you'll ever get away from it. There is that point. Take heart in the fact that this, all of this, will pass. Eventually it will end. Feel blessed.

Now, when you are sitting there at 2am, trying to think of this, think of me. Think of my friends who have children with disabilities. Think of all the smart mouthed know it all crap you said to us. Then realize, truely realize that this point will pass for you, but it will never pass for us. For us it is forever.  It does not end. As our kids grow older one issue is simply swapped out for another. The sleepless nights don't go away. We know that newborn baby poop is not the worst smelling thing in the world. We don't hold tinly little bundles who can't stop crying and we don't know why. We hold fully grown bundles who can't stop crying and can't explain why.

In that moment, picture in your mind a tricycle with a cute squeeky little horn. Picture yourself sitting on that tricycle tooting that horn. Then look up. I was the armored semi truck in front of you. I was the one who your were sqeezing your little horn at while insiting the road was yours. Now realize exactly how close you came to getting squished, and be thankfull.

Be very, very thankfull.