by ekie
we got an offer on the house.
but I can’t tell anyone
because it’s not final yet.
we also found the perfect house to move into
only it was already in agreement – wtf?
they shouldn’t do that!
it was MY house!
they have no right to buy it!
anyway, now we’re moving
in six weeks
and yet have no idea where we’re going.
I’m pretty sure
that this is hell
at least for a person with an ASD.
Let me just say this – my mother is wonderful.
Many parents know that their ASD kid is weird from the beginning, from their early childhood. My parents never did. They never suspected a thing. Yet despite all this, my mother somehow accomodated me and nurtured me in every way she could. I will not, as she would say, ‘air my dirty laundry in public’, but my childhood was not ideal. My mother went through a lot. Yet she continued to fight, and perservere. to create a better life both for her and for me.
When the diagnosis did come to light, when everything fell into place and made so much sense, instead of denying it, she embraced it. She did what she could to learn more about it, and more about me.
Right now, it looks like I’ll be stuck at home, wherever home is, for a while. To be frank, I’m not quite ready to live on my own yet. But each day, my mother continues to teach me more skills, to build on the foundation she put in place so that some day, in the next few years, I will be a successful, independent adult.
I owe everything to my mother. Everything I am is because of her. And if I am ever lucky enough to be a mother, I hope that I am really, truly, just like her.
by Ekie
We’re selling our house. On the realtor’s sheet it asks if the house is handicapped-accessible. Well, technically, no. But also, technically, yes. Because it is perfectly accessible and modified for one particular person’s disability – mine. There are no noisy lights, there are lots of comfy couches, there are earplugs available for when it is not quiet, which it usually is, and there are no noxious smells.
It occurs to me, however, that true accessibility means not just the letter of the law. It means accomodating everybody, and everybody is different in their own way. We all have different needs and wants, and we all have different definitions of accessible.
So, for this May 1st, a list of What Really Accessible Means To Me. Also, Fantastical Access Dreams
- no noisy lights.
- no lights that flicker on and off really fast (why is it so hard to make a lightbulb be both autism-friendly and environmental-friendly? I don’t know.)
- no noisy heating systems. or electrical systems. no alarms that go off unexpectedly.
- no smoking anywhere, ever. saves the planet, saves lives, saves my sanity all at once.
- no b.o. I know it’s natural and I ought to get used to it, but hey, this is my fantasy, not real life.
- no perfumes or colognes
- no people who stare and stare instead of just asking
- nobody uses the word retard, ever
- public bathrooms where they have adult-sized changing tables at waist level.
- playgrounds with rubber surfacing instead of woodchips
- 24-hour notice on everything – from big disasters to minor inconveniences
- jobs that are based on how hard you work and how much you get done, instead of how many hours you show up there
- vegetables that taste decently to my particular palate
- public playgrounds for adults (I love fantasies. in my fantasy, these playgrounds have big trampolines.)
- handicapped swings in parks that actually have the straps on them
- paint that doesn’t smell
Okay, so, yeah. Never gonna happen. But maybe, just maybe, if we get to the point where ramps and Braille are seen as a matter of course, not a matter to fight over, we’d also get to the point where when I complain about those stupid flourescents, people actually take me seriously instead of just brushing me off.
And hey – what’s wrong with dreaming?
(8:32 pm. Thursday.)
Some days, I barely notice my disability at all. And then there are days like today….
I had to go to X city to get a part for the new stove. But I mixed up two roads and ended up in Q city instead, considerably lost. I got very upset and could not calm down. The carpenters/electricians were working at my house and I had given them directions to the home depot in the next town over. But when I gave directions, I mixed up my left and my right and they got totally lost and went, literally, 45 minutes out of their way. As a result of all of us getting totally lost, nobody was home when a woman came to pick up the old appliance I had sold on craigslist, and I got so hysterical it took me an hour to stop crying and left me with a massive headache, which I can’t take ibuprofen for because I’ve been taking too much of it. I have completely missed my window for a ‘break’, meaning that during my five hours of PCA’ing this afternoon I’m going to be really exhausted. I also have to come home to the fact that we won’t have a stove for three days, but due to my wonderful sensory problems, I require a stove to cook things for a healthy diet.
So. if you’re ever wondering how an ASD impacts an adult’s life on a day to day basis, this is it. It is when all the little things add up to one big crisis and you go over the edge, lose all control, lose the ability to be polite to the electrician, and also lose whatever credibility you had as a semi-independent young person. People who say they can’t tell, who say I’m doing so well – they never see me on days like this, when just one little thing can completely set me off.
-Ekie, 1 pm, Wednesday.
by ekie
so my mother is putting our house on the market. our house. MY house. where I have lived for exactly the number of years I’ve been alive plus the time I spent gestating. Where she has lived for so long, she’s lost track, but she’s thinking it’s a bit more than 30 years. She’s gone through two husbands, four dogs, one cat, two rabbits, countless goldfish, and has successfully managed to get 2 out of her 3 children out of the nest and is ready to Downsize and Just Leave Already.
She has informed me that, regardless of my job (which doesn’t exist) she will always have a room wherever she lives for me, which is nice, but in the meantime, we are Preparing to Move, and it sucks. It really, really does.
She explained very patiently to the realtor and the stager (who is someone who tells you how to make things pretty so people will buy the house) that her daughter has Aspergers and has problems with change, to which they replied fine, we’ll do her room last. But in the meantime, there is a big ugly metal pod-thing in our yard which will soon contain about half of our possessions. A good fourth of our stuff is getting recycled/sold at a church rummage sale/given away. We are putting in a new stove and sink and countertops only to leave them for the new owners. My mother is going completely nuts trying to get everything done before we officially go on the market. I am just trying to stay sane.
I hate moving. I will never, ever be able to say this enough times. I hate, hate, hate, HATE it. True, I have never really done it, except to go to college, but it really sucks.
Unfortunately, taxes are too high here, the snowplowing bill is too high here, and our yard strongly resembles a jungle we no longer want to deal with. And so we go, despite the fact that every single iota of my Aspie-ness is screaming out in pain and frustration at all the changes, changes, changes!!! happening to my world, my safe, stable world, right now.
And so I learn – that just like everything else in life, it will be gotten through. That the question ‘Do I want to keep this?’ when turned into, ’Do I want to pack, wrap, carry, and unpack this?’ changes many of my answers. That you shouldn’t have to pay for boxes, but people only give away big ones, not book-sized ones.
Also, that I hate moving. But I think I said that already.
(7 pm. Sunday.)
There are a lot of lists that start out saying, ‘you know you’re from’ or ‘you know you’re a ‘. But for different people, the list I am trying to make could say different things. ‘You know you have a disability when’ ‘you know your child has special needs when’ ‘you know you’ve been spending too much time on disability blogs when’ – so – I made up a catch all title to include everybody, people with disabilities, people in the disability field, parents, etc. If you make your own list – and I hope you do! – feel free to modify the title as you see fit.
Anyway, here’s mine. Alternate titles could be ‘You know you’re a have an Autism spectrum disorder’ and ‘You know you’ve been PCA’ing too much’
You know you’re in the disability community when….
- your client’s mother asks how your client is doing, and you reply without a hint of irony that except for a six-point-five minute seizure, everything’s great
- you have found yourself telling a preschooler to ‘quit playing with your g-tube’
- you see nothing wrong with doing a bolus feed in public
- you have ever told a shopkeeper that you would buy something from them, but you just don’t feel right buying from an inaccessible store
- you have ever not gone into a store or restaurant because it is not accessible, despite the fact that you can walk just fine
- somebody, anybody, being potty-trained, no matter at what age, is a huge, magnificent, wonderful event
- you have ever read labels at a grocery store to find the products with the highest fat content for a client
- you thank a child for waiting until she is out of the shower to have a big seizure, as moving a prone body when it is slippery and wet is very hard
- you compliment someone on the designs on their AFO’s
- you have approached a complete stranger to ask where they got that cup-holder on their wheelchair, as your boss has been looking for a similar one
- you know that service dogs are just as likely as other dogs to eat poop, garbage, and other disgusting things, and therefore, have a policy to never, ever touch a service dog even when they are off duty because who knows where that mouth was?
- you complain about the loudness of flourescent lights
- an awful lot of people think you have allergies, which you don’t, because allergies are a lot easier to explain than sensory sensitivities due to an autism spectrum disorder
- ‘broken elevators in the building’ days are a legitimate excuse for people to miss work
- you decide to start using more sign language, and it takes you a good couple weeks to realize that ‘regular’ people think you’re blowing them a kiss when you say ‘thank you’
- you think that the most unrealistic thing happening on Greys anatomy is not all the sex in the on-call room, but that an Aspie doctor would get to be that well-renowned and not have better patient-care skills
I should mention that almost all of the above came directly from my own life, and are not made up to sound funny – they just are funny!
So…..what would go on your list?
(ps. it’s Saturday, 12:30 pm. weird that it’s the middle of the night in Australia. just weird.)
by ekie
I haven’t written in a long time, and it’s not because I’m particularly busy….. just particularly paranoid about whether or not the web is truly as anonymous as I hope it is.
Also, I’ve been cold.
I know, I know, it’s only January, still 2-plus months of winter to go, but I want it to end. Preferably, now. We get about a foot of snow a week and although there is something very, very awesome about standing in the middle of the pond and looking out, instead of standing on the outside looking in, I’d really prefer it to be warm enough to go swimming in said pond. I also know that there are places in the midwest where it never gets above zero F. lately and I’m lucky to live where our average temperature is in the twenties. And to have food and a warm bed and a warm house and a warm car to take myself places in. But at the end of the day, I’m still cold. And I’m still tired.
No job yet. Few interviews. In this economy, everyone’s looking for a job, and who would hire me when they could have anyone else? In the interim, am spending time with Molly, age 9.5, and Cracker and the Bean, age 3.5 and 1, who deserve a whole separate post devoted entirely to their adorableness. Too bad a social life with toddlers doesn’t count as one at all.
I’m cold, and I’m tired. Tired of the same routines, the same bleak midwinter, the same boring weekends sitting in the house alone. All those big and little annoyances, adding up. I can’t make friends, I can’t find a job, I can’t make decent pasta and I can’t find my library card. I’m annoyed at a world that is so unaccomodating in general, at a new administration that had so much promise yet had an incredibly inaccessible inauguration, at a tv show that had a really good character with Aspergers and proceeded to make him into a serial killer/cannibal.*
Anybody want to give me a plane ticket to Australia? I could really use a long time on a beach……
*The show was Bones, the Aspie was called Zach, and it was really good until Emily Deschanel’s character decided to ignore the basic premises of the show and turn it into another law-and-order/soap opera spinoff.
Hubby took this photo when he went to the local BCF to buy some rope. This guy was parked across 4 disabled car spaces. Even Hubby couldn’t believe the audacity of this guy.
I don’t quite get it…
I don’t think I have ever looked at someone else’s child and truly wished they were mine.
So why do people feel guilty because they have neurotypical children and we don’t?
Why would they think that I wanted their kids for myself or wanted their life for my own?
I remember friends talking to me about this not long after our baby girl died. They were worried about inviting us round to dinner for our regular Friday night get together in case their kids made us feel bad. I explained they wouldn’t, we love their kids, but they are not our kids, they don’t make us long for our daughter, our daughter’s absence makes us long for her – nothing else.
They got it, they are smart people and told us after talking about this issue they realised how ‘arrogant’ their notion was… as I said, they are smart people.
I know we have exacerbated the situation for our ‘non-coping’ family and friends with the outcome of our subsequent child ending up with a severe brain injury… but I just can’t get my head around this ‘guilt issue’?
It’s a ‘Catch 22′ situation. You are guilty at the concept or connotations you have of how the parents of the child with the disability are living so you stay away.
You don’t get to know the child, you don’t get to see or experience the joy they bring, you don’t get to lend a hand if the parents need it, you deny the parents (your friends) your friendship, you deny them their former life and then, because you are no longer involved in their life, you think their life must be really bad – it’s not.
I don’t feel I should make those struggling with their ‘guilt’ feel OK about their shortcomings. They disappoint me and it is not because I covet what they have – mostly I am sad for what they don’t and who they’re not.
They are missing out on a whole world of good stuff and so are their children.
I think ‘Abloid Guilt’ keeps you stupid – they need to get over themselves, over their ‘arrogance’.
The sooner we can get rid of the current charity based mindset in Australia for those with a disability the better.
That way those “poor kiddies with the brain ‘owies’ and their charity claiming parents” can simply be “a family”.
Maybe people in the Australian education system can stand on their heads and view this new paradigm.
Where a gorgeous 5 year-old boy who can’t talk or walk provides the strength and succour his little friends need on their very first Kindy orientation day at big school.
I like the way our kids are changing the world.
 | Gina on Abloid Guilt |
 | Buena Judson on Abloid Guilt |
 | Drew Canham on the place where seizures take… |
 | Beauratot on daily life with a disabil… |
 | Logan Smalley on Everyone is a critic |
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