Life, Autism, Disability, and More

Tag Archives: disability

Dice with face, question mark, and arrow. Image by Quicksandala via Morguefile.comIn fact, you might say I’m…wait for it….waaaaiiiiitttttt fooooorrrrr iiiiiitttttt…speechless!

Except, of course, I’m clearly not. I’m actually full of speech. Bursting with speech!

I’m referring to the issue with the third and fourth episodes in the second season, the ones that deal with parents showing up and wanting aides for their kids. Looking beyond all the major issues (funding, having aides that are full-time outside school, and all the other nonsense that makes for good TV), this particular issue completely stopped me.

Because, and this is the thing, one-on-one aides should not be the goal of every special needs parent.

First – they teach learned helplessness. Having a full-time aide, when they’re not absolutely necessary, means that the individual will have a harder time learning self-reliance and how to adapt to situations. Think about it this way: if you never had the opportunity or urge to do something because someone else would always do it for you, and possibly quicker or better than you could, would you do it? Maybe eventually, right? And what if they also made it clear to you through their actions (or even their words) that you would not be able to do that? That you cannot do it. That you should rely on them.

My son ran into this issue at school. He had been doing fine getting onto the bus after school by himself. He knew the routine, and he’d run through it without any sort of incident. Then his teacher had to start coming out with a new student. He went from capable to reliant on help in just a few days. Instead of getting on the bus by himself, he waited for her to tell him what to do, and he would want help doing it. She had to fade back out to get him to start getting on the bus again by himself, and once she faded out, he was fine doing it without help.

Second – they teach reliance on and a connection to a single person, who is paid to be near them. At a recent training session I attended, we were asked to look at the people who are around ourselves and our loved ones with disabilities. In many cases, those with disabilities are surrounded not by friends and loved ones, but by those who are paid to be near them – often nurses, therapists, aides, and other types of caregivers. Those very people, though, aren’t going to stick around too often or for too long. They do what they do because it’s a job. Yes, they probably care about the people they care for, but it’s still a job. When the money runs out or when something changes in their life, they will probably go on to pursue other options. They care, but it’s not the same kind of care that you find from someone who chooses to care.

Plus, when the caregiver leaves, they might be taking all that knowledge about the person with them. If the caregiver is a single point of contact, and they leave, then the person with a disability has been abandoned. They have been left alone. The one person who was with them is gone. If they had any sort of emotional attachment, it is severed, and it might have been severed quickly and with no regard to any of those feelings.

Third – they teach other people to stay separate or apart from the person being helped by the aide. Instead of the person being able to directly interact with the people around them, instead of them being able to learn how to communicate with others (and teach others to communicate with them), an artificial wall has been erected. In a school setting, students aren’t as likely to approach another student if they have to go through an adult to get to them. In a real-world setting, if a person will disabilities is kept apart from others through that aide, how will the person ever get to know anyone else? If they aren’t allowed to communicate, how will they make friends? How will they develop their own community?

When my son was younger, we thought having a one-on-one aide was the best solution for him. We’d heard so many good things about it, mostly the types of things that appeared on Speechless when it was time for all the parents to ask for an aide. Aides are the best! Aides will give your child everything they need! Aides are what make education successful!

I’m glad that our ARD committee decided against it. It wouldn’t have been a good thing our son. He wouldn’t have benefitted from him. Sure, maybe it would have made it easier for us and for him in the short run, but now he’s 15, and I’m able to look back and know that it would have been a mistake.

Speechless normally does a good job showing JJ avoiding learned helplessness. He makes friends who can lend a hand, like getting him drunk at a party. He tackles emergencies, like when he went camping with his father and had to make it to a far-away ranger station to rescue his father who is stuck in a bathroom. He attends a summer camp and participates in typical teenager hijinks. He’s an average, everyday teen who just happens to be in a wheelchair and need help communicating. Isn’t that the goal?

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pool

No, this isn’t the same pool. But isn’t it pretty??

I belong to many, many, many, many, many (keep going with that for a while) groups that talk about ASD and other disabilities. In one group, a mom posted something that I couldn’t help but disagree with, yet a lot of the other parents in the group chimed in on her side. So I just had to say this:

It might be a reason, but it’s not an excuse.

Let me tell you the story she shared.

The mom, her boyfriend, and her child went to a pool. The mom decided to chill out at the adult pool – who could blame her? – while boyfriend took the child to the kids’ pool.

The child is five years old, but she is at the level of a two or three year old.

With that in mind, the boyfriend is in the kiddie pool with her, and she throws in a toy. He turns to get the toy, and before he can turn back, he hears another splash.

The child had reached outside the pool, grabbed someone’s video camera, and tossed it into the pool.

Whoops.

The woman whose camera it was freaked out. She got upset and told the boyfriend that they had to make it right because she just bought the camera, and it was $500.

The boyfriend directed her to the mom.

The mom was outraged. “My daughter didn’t understand what she did,” the mom argued.

The woman argued that the mom’s daughter had destroyed it, and the mom should make it right.

The mom said that she would not, and if the woman was going to “be like that,” she better call the cops.

The woman did call the cops. The cops took a report, but they said that it was a civil matter, and it would have to be settled in small claims court.

The mom took to the forum to report this travesty, and a lot of the responses were in favor of the mom, saying that she did the right thing and hoping that the small claims court would rule in her favor.

Me? I didn’t say anything there because I knew I was outnumbered and wouldn’t be paid attention to anyway. But I still wanted to say something, so here it is.

Your child’s disability is a reason, but not an excuse.

Simon is autistic and intellectually disabled. Could he do something like that? Yes. What would I do about it? Be a proper parent and take the responsibility for my child’s action because, well, I’m responsible for him! Just because the child doesn’t know better doesn’t mean the adult doesn’t. If she had been there with a neurotypical two year old, would she have taken the responsibility?

Now, I understand. Having Simon home all day every day over the summer is rough, on him and on me. There were plenty of days when I wouldn’t mind taking a little break and having someone else be on duty. (And, to be fair, I did get days with someone else on duty.) I understand why she wanted some alone time at the adult pool. And I understand that the boyfriend couldn’t be on top of the child at all times. It’s just not possible. That’s how kids manage to do so many awesome and dangerous and messy things.

But that doesn’t mean you’re not responsible for them.

 


dentist selfie

Dentist Selfie!

You get to the school to pick up your 13 year old, and you find out that (according to him), no one has told him all day that he’ll be going to the dentist, so the first thing he says when he sees you is, “We go home.” You’re forced to explain that, no, we can’t go home. We have to go to the dentist. He isn’t pleased to hear it.

You haven’t had a chance to grab any apple juice before picking him up because the day had spiraled a bit out of control, so you pray that there is some juice left from his day at school. Thankfully, there is. You convince him that going to the dentist will be fun and give him a juice for the ride.

On the way to the dentist, he reiterates his urge to go home. You think about the previous dentist visits, and you tell him that it’s okay: they’ll take pictures of his teeth (he likes pictures), they’ll clean his teeth, and then the dentist will look at his teeth. You make him repeat it back. You go over it for the whole ride. Then you miss the turn for the dentist’s office and have to make a bunch of left-hand turns in order to get back to where you needed to be.

You check in at the dentist’s office, and you discover that they’ve lost a bunch of information, so you need to fill out the five pages of forms. Two of the pages aren’t things you can actually fill out – they ask about whether or not the patient has pain, has any sensitivity to cold or heat, and other questions that would require a level of communication that doesn’t exist. Then there’s a page that asks you to initial that you understand that only the patient can go back by himself. You go up to the counter and talk to the woman who laughs it off and says it’s okay, there’s no test, but you think it’s kind of important that they realize you don’t know the answers to these questions, and they won’t be able to get them either.

The hygienist comes to get you, and instead of following the carefully prepared order of operations you’ve outlined, she immediately wants to start the cleaning.

Shit.

Your son begins to have a bit of a meltdown the minute he sees the chair and tells you (and the hygienist) quite loudly and repeatedly that he wants to go home. You change the order of operations and begin telling him that it’s just going to be a cleaning and then having the dentist look at his teeth.

He still refuses to sit in the chair. He instead sits in the dentist’s chair that spins, and he stares at the seat while repeating that he wants to go home. He’s almost crying, but not quite. You know that the other patients are probably not enjoying it because they are also kids who want to go home, but you try not to focus on that. Instead, you get into the chair to show him that it’s comfortable and it’s fine, and look, see, there’s a light, and they need the light to be able to do anything, so how about we switch places?

Miraculously, it works.

He gets in the chair for you, but he is still complaining. That’s okay. You rub his leg while the hygienist begins to clean his teeth. And HE LETS HER. Yes, that’s right, he actually opens his mouth, he picks the mint flavor, and he lets her clean his teeth.

You almost kill the hygienist there and then, though, because as she’s working with him (brilliantly well, actually), she begins to try to soothe him and she brings up Dad. You want to crawl inside yourself. Maybe he didn’t hear it, you think. But, of course, he did. And he immediately focuses on wanting to go home and having Dad waiting at home. Neither of these things will happen right away, of course, and now he’s upset again.

You have to tell the hygienist that, no, that’s not a good thing to use to make him feel better because it will only make things worse, and she apologizes, but the damage has been done, and while she’s working so hard to clean his teeth, he is talking around her – quite clearly – and saying that he wants to go home and that Dad will be waiting at home. Inwardly, you are cringing and hoping that he will magically forget it, but you know that isn’t going to happen because he doesn’t forget things.

The cleaning is over, and the dentist comes in, and she gives you the news you don’t want to hear – there’s a big old cavity on tooth number 13 (of course it was number 13), way in the back there, and they will need to fill it. Which is both good and bad: bad because they will need to sedate him, but good because they offer sedation and they do it at 7:30 in the morning, so keeping him from eating until the appointment isn’t as hard as you thought it would be. But now your nerves are even more frazzled because you have to start worrying right away, even though the appointment won’t be for over a month.

Then, to make sure she hasn’t missed anything, she asks to see the x-rays. The x-rays that no one took. The hygienist says that she didn’t because she was worried he wouldn’t let her.

You are mentally slapping your head, and hers, because you had taken that out of the rotation, and now you have to tell your son that, no, he can’t go home yet even though he finished the final thing on the list because the list has been re-ordered again, and now he has to go get pictures taken. But he likes pictures enough that he goes along with it, and he does very well, as you knew he would, and then it’s time to go back and wait in the chair again.

The chair is not happening.

Nope. Not the chair.

Luckily that’s okay because they don’t need him in the chair – they’ve already done all that good stuff, and so he can sit in the dentist’s chair (his original goal), and so he does okay, other than repeating that he wants to go home and then getting a little nervous because a kid in the next exam room over keeps trying to make a break for it and comes past the doorway multiple times.

Finally, it’s time to go find out how much everything is going to cost. Bonus: the day costs nothing thanks to insurance, but the filling will be $400 after insurance pays because of the need for sedation and all the other fun things that go with it.

So you leave, and you begin worrying about his next dentist appointment.


now watchI sit here in the cafeteria of my son’s old elementary school at 6:45 at night. There are three lunch tables set out by a very kind and helpful janitor. There are seats for 12 at each table. There is plenty of room for kids to run and play around the room – there’s even an empty stage. And there’s me.

Why am I here?

I’m in charge of the new parent-led support group. The group that’s meant for parents of children with special needs. The children don’t even need to be in the school district. They can be in any local district. Or a non-local district. Home schooled. Or even too young for school but wondering what will become of their child when that child is school age (which, in the world of disabilities is 3, the age when PPCD starts and ECI ends…and if those initials sounds wrong to you, you might live in a different area or state, but the age is probably the same: it’s when the early childhood intervention ends and the pre-school begins).

So we cast a pretty wide net.

Flyers for this meeting went home with parents about a week ago. I posted in a bunch of FB groups. I even sent a mass email to anyone who gave me that email address at the last meeting or at the school district’s “ability fair” back in October.

And yet…I’m here alone.

I guess I shouldn’t complain too much that no parents showed up.

Our speaker is also MIA. She’d contacted us a few months ago, asking to present to the group. We got her scheduled with the date. Then I gave her the time and the place. Never heard from her. I tried to reach her today for a last-minute confirmation. Nothing.

Which means that I’m sitting in the cafeteria, alone. No parents. No speaker.

If you ever wonder why districts/schools can get away with doing so many bad things, giving students sub-standard services, treating special needs kids so poorly…I can answer the question with my lonely presence here tonight.

People – parents – don’t put in (or can’t put in) the time and effort.

And on one hand, I get that. I really do. It sucks to not be able to find even a single hour to get to a meeting about your child’s future. But, on the other hand, it’s kind of like voting. How can you complain if you don’t show up?

Sadly, I’ve seen this happen before. Many, many years ago, before our school district’s special ed department was as fantastic as it is today, we had to fight with them (getting a lawyer and all) because they were trying to do something not in our son’s best interest. It really wasn’t in any child’s best interest, but it was the easiest thing for them to do. At the time, we tried to rally support in the fight, to get the other parents involved. None of them were interested.

Our effort made a different – our son got a better end result, and we got an absolutely fabulous new head of special programs.

But as I sit here tonight, I try to think good thoughts. Instead, I flash back on an accidental meeting I had with another mother about eight years ago. It still haunts my head.

We were both picking up our then four-year-olds from their afternoon pre-school. Her son seemed to be very high-functioning, so I asked what his diagnosis was – I thought maybe he was Asperger’s.

She looked at me, confused. Then said, “Oh, I dunno. ADD or something.”

Well, the class was only for kids on the autism spectrum, so while her son might have had ADD as well, I suspected that what she actually meant was PDD-NOS. Not that she knew that. I’m still face-palming over that afternoon.

Anyway, the point is: the evening was a bust. And a reminder – I hope – to parents and families to do all they can.

And now I’m at home, posting up this blog, and drowning my sorrows in hot chocolate and popcorn along with a really bad horror movie.


halloween
I love Halloween. Looooove it. It’s probably my favorite holiday of the year (other than Christmas because, well, Christmas…).

I’m one of those people who can’t decide if ‘Nightmare Before Christmas’ is meant to be for Halloween or Christmas. Both of them are just so awesome.

Because of that massive love, we normally decorate inside and outside, lots of lights, lots of scary stuff, lots of not-so-scary stuff. You get the idea. We carve multiple pumpkins. My husband puts up lights in my office, around the TV, anywhere we can fit them. We put up paper cut-outs on the doors, on the kitchen cupboards, anywhere that tape can stick.

Not this year, though.

This year, Simon has decided to become obsessed with the holiday.

He checks the calendar every day. He reminds us that “Halloween is in October.” He tells us that we’re going to go Trick or Treating on Halloween. He tells us that he’s dressing up as a blue crayon (for the second year in a row).

When we have to tell him that it’s not Halloween yet, he gets upset. He doesn’t understand waiting for it, and he doesn’t understand the count-down. At this point, he is agreeing with us; he knows that it’s next Friday. But he may also agree that it’s ‘next Friday’ next week when it’s actually that Friday.

We promise him that we won’t miss it, that we won’t let him forget the day. But he still has a lot of anxiety about it. We don’t know why, and he can’t tell us why.

Instead, we are just trying to minimize everything we can. There are no indoor decorations. We have a minimal amount of outdoor decorations. We don’t mention the ‘H’ word unless absolutely necessary, and even then we try not to talk about it without using just veiled references.

Of course, time will pass, and it will be Halloween soon, and it won’t matter in the long run if we went one year without inside decorations.

But earlier this week, Simon flipped the calendar over and told me that next month was November, and that Thanksgiving was in November. Whoops.

 


Simon bowling at Special Olympics practice

Simon bowling at Special Olympics practice

I never really thought I’d be writing this blog, but after this weekend, I felt the need to do so.

We’re super lucky.

Really, I say that, and I mean it.

I don’t mean that we’re lucky that our son has autism. But we’re lucky that he’s a cute little blonde boy who gets all the oohes and aahes and attention. No one really seems him as threatening or perceives him as anything other than a disabled child.

For now.

But he’s growing up. He’s 12 now, almost as tall as me, and about 130 pounds. Not so little anymore.

This past Saturday, we were at his Special Olympics bowling practice. And there was another boy there – another boy that was moving from tween to teen, another large boy who was growing up. Only this other boy was black.

He has slightly more advanced language than my son does, and he is far more outgoing, wanting to talk to everyone, share with everyone. He was especially proud that he’d just gotten his braces off, and when he saw another teen with braces, he got right into the teen’s face, showing him his now-braces-less mouth and making a comment about braces that was rather hard to understand (since his mouth was open to show off the lack of braces while he spoke).

The first thought that flashed in my mind was this: “The police would so take him down if he did that to them.”

They wouldn’t understand. They wouldn’t know. They would immediately judge him a danger because of his size, his inability to communicate (which could be seen as drug use instead of disability), and because – let’s just be honest here – because he’s black.

And it really hit me then. My son will get treated differently because he’s white. He probably already does get treated differently because he’s white. But when he’s grown up, when he’s walking down the street, I will need to worry about what will happen if he encounters the police, but I won’t have to worry as much as the other boy’s mother. I won’t have to wonder if he’ll be shot just for walking through the wrong neighborhood. I won’t have to wonder if he’ll be stopped and construed as “hostile” or “violent” just because of a simple thing like skin color.

Now, please realize I’m not saying that police are bad and evil. They are in dangerous situations. They have to make snap judgments. They are the ones called when someone else perceives a “dangerous situation.” So it’s not only the police that I’m really talking about here – it’s everyone out there that can escalate what is simply a boy, teen, or man with autism and an inability to communicate clearly. I used the police in my example because of recent news (and not as recent news) where police over-reacted to situations involving the poor, the homeless, and the disabled. And when a minority is thrown into any of those mixes, the situations tend to get worse.

I can’t do anything about the white privilege my son will undoubtedly – and does undoubtedly – receive. But I can try to do something about the fact that others will not get it. I can start simply by being aware. I can start by making sure others are aware. And I can start by trying to get others to understand that just because someone’s skin or nationality is different than their own does not mean that the person is any different in any other way.


I followed a link about a cat because, well, it’s Caturday, and there’s a law that says you must.  Or so I’ve been told.

It led me to the tale of Mercury the Kitten.

Mercury, at a very, very young age, lost his two front legs in a weed whacker accident.

But now he struts around like a t-rex, happy, content, and able to do anything and everything he wants to do.  He’s one cool cat.

Then I scrolled down to the comments section because sometimes the comments are the best part of a site.  And that’s where I saw it.  A posting from “kim moore.”

Kim posted: “youre so wrong i actually rescue animals and have kids and 5 cats of my own and they r spoiled rotten i think keeping this kitty alive is selfish and its cruel what does a cat use more than its front paws ? it makes me cry to see this cat some people dont know when to pull the plug people think euthanizing an animal is is so horrible its painless and reserves a spot in life people keep pets around like this for selfish reasons……..its an adorable kitty but get over the selfishness already and no not everything or everyone should live theres a time when it turns into cruelty”  (And, yes, I purposely kept in all her misspellings and grammatical errors because, hey, if nothing else, we can pick on that.)

Keeping in mind the kitten in question is not having any problems.  The kitten in question is a happy little kitten who doesn’t seem to even really know that’s there’s something wrong with it.  The kitten doesn’t seem to think there’s anything cruel about its existence.  It plays with string.  It plays with kitties.  It runs around on its back legs.

Other responses tell her “you sound like quite a bad person” and that she’s “way beyond wrong.”  One person (named Kate, but I swear it’s not me!) even told her, “You are the cruel one.  You are the selfish one.  Everyone DOES deserve a chance at life.”

Another person pointed out that they were born with a disability.  “…it’s really too bad that someone didn’t put me down when I was a baby. Those optimistic bastards…how could they have known I’d find a full, happy life?”

The responses from other people give me hope, but then there’s an immutable fact to also keep in mind.

“Kim” said it.
She believed it.
She is not alone.

Like back in August of 2013, when there was the “letter from a pissed off mother” who suggested that a boy with autism be euthanized.

Like the fact that a number of people with autism (and those of us who love someone with autism) were outraged when Autism Speaks again presented people with autism as a burden – ““I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the video campaign.”

Like an unnamed (because I really can’t/shouldn’t name him) college professor who, when a counselor told him that he needed to make accommodation for a student who was going blind, asked, “But aren’t there special schools for those kinds of people?”

I honestly just cannot comprehend the mindset of some people.  Do they not realize that everyone is different?  That everyone has different abilities and problems?  That one day, sooner or later, they will either be dead or very possibly relying on someone to help them get through life?  Will they choose euthanasia when it comes to be their time?  When they break a leg or develop a severe allergy or other condition that makes them unable to live like a “normal” person?

While some disabilities and conditions are fatal, there should always be hope, and there should always be at least a modicum of understanding for those who are different, for those who are atypical, for those who are not identical to us.

In the case of “Kim’s” Caturday posting, I can’t help but think she got selfishness confused with compassion.  Luckily for her, while she might have the selfish part down, a lot of other people have the compassion.

Simon, chilling on the back porch, unaware that he's a "burden" or that we're "selfish" for having him...

Simon, chilling on the back porch, unaware that he’s a “burden” or that we’re “selfish” for having him…