Archive for the ‘General Disability Discussion’ Category

Useful Things I Learned from Being an ABA Therapist   Leave a comment

Before I start, I want to be absolutely clear that this post is not meant to condone ABA as an autism treatment. It is merely an attempt to find a tiny bit of good in my past career. (The biggest good was getting to know the children I worked with, and many of the families were delightful people doing what the “experts” had told them to do.)

Applied Behaviour Analysis (ABA) is still a hot-button issue in many parts of the autism community. I used to do ABA, primarily Lovaas-style. The type of ABA I did is heavy on table time and progresses through a specific set of programs designed to teach everything from speech to academic skills to self-help skills. It was touted as being scientifically validated and able to “recover” autistic children, or at least make them indistinguishable from their peers.

There are all kinds of problems with that, and with the ABA industry as a whole, but other people have written about that far more eloquently than I ever could. So today I want to talk about the useful things I took away from my time as an ABA therapist. Because there are some helpful techniques and attitudes I learned.

If the student isn’t learning, it isn’t their fault. My first ABA consultant taught us that if the child wasn’t learning what we were trying to teach, there was something wrong with our approach. Maybe we weren’t consistent enough from one therapist to another. Maybe we needed to present the material differently or change the way we requested the behaviour. Whatever it was, we were the ones who needed to adjust.

Breaking tasks down into steps and chaining behaviours. As someone who has ADHD and the accompanying executive dysfunction, it can be helpful to break down a large task into smaller steps. That way I can focus on one small piece at a time instead of getting overwhelmed trying to figure out where to start. Chaining tasks is also a really helpful concept that has helped me change my routines (and develop them in the first place).

I know my A-B-C’s. Not my alphabet (though I do know that as well), but a way of figuring out how to help my two-year-old, non-autistic child behave appropriately. When he does something I would rather he not do, I look at the antecedent, or what happened before he did the thing, I look at his specific behaviour, and I look at the consequence, or what happened afterward (i.e., what he got out of it). This is most beneficial when I remember my developmental psychology, since that tells me that a toddler doesn’t yet have the executive functioning to control his impulses (and as an ADHDer with impulse control problems, I understand this intimately). Understanding the reasons why he does something helps me find other ways for him to get whatever it is he needs, in a more acceptable fashion. It also usually comes back on me: a lot of his behaviour happens because I didn’t put something out of his reach, or I wasn’t supervising closely enough, or I was ignoring his attempts to get my attention.

I don’t over-react to things. One of the things I learned as an ABA therapist was to keep my cool at all times and to be neutral when correcting responses. This translates to my kid having a mom who responds to things like refusing to come for a diaper change by asking if he can come on his own or if he needs help. This gives him power in the situation that is appropriate for his developmental level but still gets the job done.

Some of the teaching methods can also be useful, but it depends a lot on the person and the thing you are trying to teach.

But there you are, a list of the positive practical applications of ABA techniques. Note that understanding child development is important (it wasn’t needed when I was working), as well as respect for the individual’s particular needs and desires (again, not necessary in my work). As with so many things, intent and attitude matter.

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How to talk to (or about) people   Leave a comment

I’m reading a very goo book right now about respectful parenting.

However.

There’s always a “however,” isn’t there?

Even people who are wonderfully respectful of children make mistakes. I haven’t talked to the book’s author about the problem and I’m not telling you who it is because I don’t want people piling on this author.

The problem is in a passage about how we should speak normally to children. The author is making a great point — that we don’t need to oversimplify and should presume competence when we’re talking to children — but then hurts the overall point by saying that we should not talk down to toddlers as if they are “mentally deficient.”

Here’s why that’s a problem.

We say we shouldn’t talk to children like they’re intellectually disabled (ID). People with ID say that we shouldn’t talk to them like they’re children. (Actually, being talked down to is a problem for most disabilities, but the passage I’m talking about specifies ID with the phrase “mentally deficient” so that’s what I’m going to speak to here.)

Presuming competence is important no matter the person. Someone who has an ID should be spoken to with respect for who they are as a person, what they know (and what they might know), keeping in mind their actual age. Don’t talk to an adult as though they are a child; even if you end up having to simplify your language a little bit, you shouldn’t do that thing people do when they talk to small children or to adults with ID, where the voice gets higher and the words get shorter and the conversation gets stilted.

By the same token, a child should be spoken to with respect for who they are as a person, what they know (and what they might know), keeping in mind their actual age. Don’t talk to a child as though they are an adult; make sure you simplify your language based on their ability to understand you. And don’t talk to children in that high-pitched, unnatural cadence, either. They’re people, and they understand more than you think they do.

My son is 22 months old, and he is gaining language by leaps and bounds right now. It’s astonishing to me, the number of words he has gained expressively over the last few weeks. He mostly communicates one word at a time, but we can still have whole conversations. I just have to pay attention to context and ask questions.

For example, a common exchange after we saw Santa for photos before Christmas:

R: Shashi. (Santa)
Me: Yes, you saw Santa.
R: Up! Up!
Me: He picked you up.
R: Taw.
Me: You were so tall!
R: Bin, bin.
Me: Oh, did he give you jelly beans?
R: Yeah. Mmmm!
Me: They were yummy, huh?
R: Yeah! Tee!
Me: Oh yes, there was a tree there, too.
R: Yeah.

See how expressive he is with just one or two words? Most people who have ID can speak in full sentences (regardless of how they speak, whether with voice or AAC). On top of that, receptive language develops much earlier than expressive language, so the odds are pretty good that someone who doesn’t speak as “well” as you do does actually understand everything you say to or about them. I know my son understands most of what we say to him. (He doesn’t get our jokes yet, but that’s okay. We make a lot of puns.)

The author is making a great point with this passage and made a poor choice of words. I hope that it isn’t indicative of an attitude that people with ID should be talked down to (and I don’t think it is, I think it was just a mistake). Instead of including the bit about being “mentally deficient,” the passage could have simply said not to talk down to children and then explained that receptive language develops earlier than expressive language, which means that children understand way more than they can say. No accidental demeaning of people with ID.

This kind of attitude — these kinds of sayings — are ubiquitous in society. Take a moment when you’re writing or talking. Consider whether there’s a more accurate way to say what you want to say: one that won’t damage a group of people.

Self-Care   Leave a comment

Something I’ve noticed a lot of disabled people are actually pretty bad at is self-care. (Yeah, it could just be my circles, but somehow I doubt it.) We push ourselves to do as much as we think we’re “supposed” to do (for me that is apparently like three times more than other people do in a day) and beat ourselves up when we don’t achieve that goal. When we have a bad day (as in, a day when our body or brain just won’t let us do stuff), we beat ourselves up over how useless we are.

Let’s be clear here: self-care isn’t coddling, it’s taking care of yourself and making sure you get what you need in order to be healthy and safe. Sometimes it means forcing yourself to do stuff, sometimes it means just going with the flow.

For example, when I get depressed one thing that often helps is spending time one-on-one with a good friend. I know this helps my mood lift and gives me energy and motivation, but when I’m depressed I often don’t feel like seeing or interacting with anyone at all. I’d rather just hide myself away in my room and stay there until I feel better. The problem is that doing that won’t help me feel better and is actually more likely to make me feel worse.

Meanwhile, sometimes I have what I call “bad brain days”: days when my executive functioning is shot all to heck and I am doing well to remember to eat. When that happens, I have to take it easy on myself. I lessen my expectations, choose just a few things to try and get done, and promise to be nice to myself if I don’t manage it. It’s not like I have any control over whether or not my brain is going to be able to do stuff on a given day; that’s part of having ADHD.

It’s taken me a long time to learn this, and I still have to work hard to make sure I look after myself properly.

Self-care is different for everyone. We all need to learn to do right for ourselves.

The importance of sleep   Leave a comment

Like I wrote last Thursday, I went to see my ADHD doctor to talk about medication.

He listened to me, looked back over his notes from my previous appointments (I’ve been seeing him somewhat regularly since 2010), and asked me how my sleep was.

That’s an important question.

Over at the ADHD blog, people write in asking why their symptoms might be worse, and how to know if they need a higher dose of medication. I always say the same thing:

Check to make sure that these things are in order, because if even one is out of whack you will have problems:

  • Stress – Increased stress makes symptoms worse.
  • Sleep – If you’re not in bed for at least seven hours per night, you are probably short on sleep, and lack of sleep gives non-ADHDers the symptoms of ADHD.
  • Diet  – Diet doesn’t cause ADHD, though some allergies might cause similar symptoms for some people, but eating a healthy diet that’s high in protein is really good for the ADHD brain.
  • Exercise – Regular exercise is also really good for the ADHD brain and makes it easier to focus for a little while.

So these are all about as good as they’ve ever been, except my sleep… well, with a seven-month-old baby, I’m sure you can imagine what that looks like.

I’m now tracking my sleep for the next few weeks, and trying to get more (good luck), and I’ll go back to see him at the end of that time. Maybe I’ll post my results here, too.

Either way, my ADHD is big these days, as are my anxiety and depression (though not as bad as they have been in the past).

What’s big for you today?

Posted October 24, 2015 by karalianne in General Disability Discussion

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Consistent Inconsistency (I)   Leave a comment

I doubt I’ll ever be good at keeping a blog the way people think they should be kept. “One main theme, and post regularly – if not daily, then at least once a week, on a schedule!”

That’s just not how I operate.

I’ve said many times in the past, “the only thing that’s consistent about my ADHD is its inconsistency.” And I think it’s important to recognize that, to embrace it sometimes, to work with it, and to enjoy it as much as possible.

I mean, inconsistency can be exciting. You never know when you’re going to forget a meal in the oven and have to scrounge for dinner. You never know when you’re going to get lost and learn a whole new part of the city. You never know when you’re going to fail to do the laundry for three weeks and end up wearing that weird dress someone gave you ten years ago that you’re shocked even fits you.

Did I say exciting?

Okay, I meant stressful.

Being inconsistent may be a consistent thing, but what doesn’t work one moment often works the next, so there’s no knowing from one second to the next what I’m going to be able to accomplish. This means that I will do all the right things, make my plan and have an idea of how my day is going to go, only to have everything fall apart and leave me standing in the middle of a pile of unfinished projects with a list of uncompleted (unattempted) tasks the length of my arm, and my primary achievement at that point is that at least I managed to feed everyone enough (including the animals).

This is stressful, as I’m sure you can imagine. It’s the unpredictability that drains me, far more than the actual lack of achievement. I’ve been an underachiever all my life, after all – hard not to be, with a brain that works this way.

But I want to do better. I want to do the things I plan to do. I want to achieve what I intend to achieve.

The fact that I cannot do this consistently (or, often, at all) is what makes my ADHD a disability.

Posted September 11, 2015 by karalianne in General Disability Discussion

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Disabled Animals   Leave a comment

Luther has a brown bum; both are brown and white Abyssinians.I have four guinea pigs right now, and two of them are rescues – surrendered by their owners due to allergies. One of these guinea pigs, Luther, has some chronic health concerns:

  • he has to be checked daily to ensure that he’s not impacted (kind of like being constipated, but at the point of expression rather than up in the intestines, and I get to clean him out if he is);
  • he seems to have some scarring on his lungs that makes it difficult for him to breathe;
  • due to his breathing difficulties he sometimes has trouble cleaning himself properly, which results in the cleaning fluid guinea pigs secrete in their eyes to spill all over the fur around his eyes and drying there; and
  • his grease gland needs to be checked to ensure that it’s not in danger of becoming infected.

Luther lives with his brother, George, in a nice big cage. They live happy guinea pig lives, eating veggies and pellets and hay and grass, and sleeping and chasing each other around the cage.

Luther’s health concerns are, as I said, chronic, which means that they aren’t going to get better. He will always have these conditions, and will always require the extra care I provide. George and Luther are also both five years old, so they are considered elderly; my job is to keep them comfortable and happy until that’s not possible anymore.

Flame is a tortoiseshell tabby, or torbie.Along with the guinea pigs, we have a cat, Flame, who is seven  years old. Flame was abused when she was younger and spent two years living in a home where the other cats hated her. When she came to us, she had licked all of the fur off her tummy and rear legs, as well as most of her front legs and part of her tail. She was eating a food for cats with allergies.

We aren’t sure if she really has allergies, because the “lick until there is no more fur” behaviour is common in cats who have allergies but also in cats who are incredibly stressed. Now that she is in a less stressful environment, her fur is growing back. Once her tummy has filled in we will take her to the vet and start working to find out if she is really allergic to some kind of food or if it was all just due to stress.

She is also very needy and wants to snuggle with anyone who has a lap. Her purr could shake the house!

Chronic conditions like those George has and the one Flame has can be disabling. But with appropriate care (checking Luther’s bum every day) and accommodations (Flame’s special diet, a less stressful environment) some of the effects can be ameliorated. That doesn’t mean they stop having these conditions, it just means their lives are happy ones and they can do the things they need/want to do without so much difficulty.

Disability vs Impairment: My thoughts.   4 comments

Yesterday I shared this link on Facebook with this comment:

This is a good article. I’m rather iffy on the bit in the middle where she talks about “impairment” being the bit you can’t do no matter what and “disability” being the thing society imposes upon you, because I sure as heck don’t feel “impaired” when executive dysfunction kicks in. 😛

So I was asked how I define “impairment.” Here’s my answer:

The word “impaired” implies that things are not as serious. The distinction she says the social model makes between being “disabled” by society (having ability taken away by something external to oneself) and being “impaired” regardless is cosmetic at best.

When I really want to do something and never get to it because my ADHD decided I should hyperfocus on something completely different (and usually fairly useless), that’s not an “impairment”; it’s an inability to do something I would like to do. That’s a disability. And it’s within, not without.

I feel like sometimes these distinctions are made by people with physical/acquired disabilities and they have forgotten about those of us who don’t fit that profile.

Having said that, I don’t like person-first language either and I am frustrated that the name of my disorder doesn’t lend itself well to identity-first language.

Someone else has now talked about what impairment means and so on, and how “disability” is about social and “impairment” is about objective difficulties with things. But their examples are, again, all about physical disabilities. My response:

Except there aren’t always accommodations that will help. A lot of mental disabilities can’t be accommodated. It seems that the biggest thing for something like what I deal with is often “change your expectations” or “be okay with not being able to do the same stuff as well as you did yesterday” and stuff like that. That’s not an accommodation at all; it’s not allowing me to still get things done (both things I need to do and things I want to do), it’s expecting me to just change my attitude. And that’s not always possible. (Adjusting my attitude has resulted in much better self-esteem and I am much more able to deal with life when ADHD derails my day, but it isn’t an accommodation because it’s not making it so my day stays on track.)

The kinds of accommodations I need from society also aren’t exactly things that you can expect anyone to give. Flexible appointment times for doctors and dentists and so on? It is to laugh. (And by flexible I don’t mean “pick from these available times,” I mean “it’s no big deal if you’re half an hour late because your ADHD is a pain in the butt.”)

And this is the frustration with the social model of disability, and the frustration with the terminology of “impairment” vs “disability.” I don’t experience these things as “impairment”; I experience them as “disability.” As in “I have a lack of ability in this area.” And it’s not something that can be fixed.

I know I’m probably shouting into the wind here. I like the social-relational model of disability a lot, but I don’t like replacing the word “disability” with “impairment” because it implies that it’s not as severe. It implies that if society doesn’t expect my brain to function just like non-ADHD brains, and makes allowances for that and accommodates the difficulties I have because of it, then I am somehow not as disabled/impaired by my ADHD. Like removing stigma and discrimination magically makes my ADHD easier to live with.

It doesn’t work that way.

I know it doesn’t work that way because I have bent and twisted my life as much as possible to accommodate my ADHD, and I am still disabled. I have friends and family who accommodate my difficulties and accept me just as I am, and I am still disabled.

I will always be disabled, even if I wake up tomorrow and everyone believes in and accommodates ADHD.

That’s just how it is.