disabled-kid

to anyone who cares for, works with, or otherwise tries to support a disabled child or children:

please, please find ways to ensure that your disabled kid(s) / the disabled kid(s) in your care have ways to interact with, and learn from, disabled people older than they are who are disabled in the same or similar ways. 

i cannot stress the importance of this enough. 

no matter how much you may care about a disabled child who is in your life, if you do not navigate through space and time while facing similar ways of being, you are never going to know about those things in the same ways as someone who is living them. it’s important to learn to accept this, to accept that there are going to be things that you are not capable of teaching your child because there are certain things one can only learn by living them.

a sighted person is never going to know all of the very specific things that might help someone use a white cane effectively in the ways that a blind person who uses one every day will, no matter how much training they have. 

a non-wheelchair user will never know how the very specific things that helps one to maneuver a wheelchair as someone who uses a wheelchair, even if that non-wheelchair user has been a wheelchair mechanic for decades.

a non-autistic person will never be able to really understand some of the very specific ways of receiving and processing information autistic people have or what it’s like to experience sensory input in ways that are almost entirely misunderstood by most everyone around you, even if that non-autistic person has spent lots of time with autistic people, parented an autistic child, etc. 

the point being, if you really care about a disabled child who is in your life, please recognize that you can express that care by helping provide that child with opportunities to learn from people who are like they are. please don’t let your child grown up having been taught about their disability / disabilities by all non-disabled people. 

please don’t help perpetuate systems and structures which keep disabled people isolated, and without anyone to whom they can relate. 

don’t buy into the idea that the best “therapies” for disabled children come from “highly trained experts” if those same “experts” are non-disabled or, often, even disabled people who aren’t disabled in the same ways as the child or children in question. sure, there may be some non-disabled people who can help a child learn certain kinds of skills, and can support that child in other ways, but that’s not a substitute for that child learning how to be disabled, learning how to move in the world in the ways that they do (or don’t) from people who do (or don’t) move through the world in similar ways.

if you want to do right by a disabled child in your life, help make sure they learn how to be disabled. this is something so few of us get. 

Disability doesn't come with extra time and energy

I’ve heard a lot of advocates of inclusion say things like “kids with disabilities work twice as hard as everyone else” or “my employees with Down’s syndrome never come in late or take a day off.”

This sounds like praise, but it isn’t.

The time disabled people spend working twice as hard as everyone else has to come from somewhere.

There are reasons why kids aren’t in school every waking moment. There is a reason why vacation time exists and why it’s normal to be late occasionally.

People need rest. People need leisure time. People have lives and needs and can’t do everything.

Being disabled doesn’t erase the need for down time. Being disabled doesn’t erase the need for play, or for connections to other people.

Working twice as hard as everyone else all the time isn’t sustainable. Praising disabled people for doing unsustainable things is profoundly destructive.

People with disabilities should not have to give up on rest, recreation, and relationships in order to be valued. We have limited time and energy just like everyone else, and our limitations need to be respected.

It is not right to expect us to run ourselves into the ground pretending to be normal. We have the right to exist in the world as we really are.

I wish that anti-bullying campaigns would stop arguing that “anyone can be bullied”/that “it’s completely random who the bullying victim is” cause it’s usually not just “anyone” who’s being bullied - it’s the disabled kids, the neurodivergent kids, the kids of color, the fat kids, the mentally ill kids, the poor kids, the transgender kids, the gender nonconforming kids, the non-straight kids. We won’t get anywhere with stopping bullying if we don’t confront the underlying reasons cause it’s no accident that it’s the kids belonging to marginalized groups who ends up being bullying victims. Bullying is not just a “random” evil it’s an expression of the ableism, racism, classism, sexism, homophobia, fatphobia and transhobia in our society and it’s about time that we confront that in our anti-bullying campaigns. 

parents not believing their disabled child is actually disabled and forcing them to go beyond their limits is abuse.

parents calling their disabled kid a burden or a problem to them is abuse

parents using the disabled kids story to their advantage and making it more about themselves is abuse.

stop excusing abuse just because the victim is disabled.

(Abuse, ableism tw) Yesterday I visited a preschool Portia’s therapists and the public education system want to put her in. Portia receives services because of her developmental disabilities. It’s a program that’s a part of public education and even infants can qualify. Before yesterday, it seemed her therapists only concern was making sure she was developmentally up to date physically, and educationally (think fine and gross motor skills, speech etc).

The preschool was-my realization. The preschool was full of kids that had various disabilities all on the “socially disabled” spectrum. Children were given directions in a “fun” manner around a circle and were literally forced to participle. Even if you didn’t want to. Physical redirection was used. That means children not looking at the teacher would had their heads physically turned towards them. Children who weren’t doing the arm movements for the dance correctly had their wrists grabbed and were forced to do the movements. Forced high fives. Forced everything. Absolutely no child had a choice for participation. It was do it or someone will grab your body and do it for you.

One child, a nonverbal autistic child, at the table where they were given instructions to glue hearts on a valentines box, had a stick of glue held in front of him by a therapist. She had a hold of his wrists as he kept reaching for it. “What is it. No. What is it.” She repeated over and over as he whimpered and reached for the glue to participate. This went on for about 15 minutes.

He also endured one on one ABA from the teacher using a reward only method (praise) for following instructions and making eye contact.

A child had a tantrum and was held down. I asked how a child having a melt down was usually handled. They said that it depended on the child. She seemed to avoid my question but told me that she had “lotion” that she would have them rub on their hands in front of the class and called it “calming lotion.”

I saw a child being held tightly in a therapists legs for not crossing his legs and bouncing them.

I asked what the purpose of the class was, my therapist explained this class was meant for “social therapy”, by forced participation.

This program is paid for and supported by the education district.

Never mind that restraining a child, forcing a child to do something, allowing an adult access to a children’s body with no choice for the child, and forced socialization and physical contact (forced high fives as an example) are all inappropriate and I would personally define that as abuse. But what’s important is all of this therapy is not scientifically to be successful. It’s…non effective, it does nothing but create children who believe they must follow orders (for participation, social activity etc) by an adult, allow anyone to touch their body with no ability to say no, and allow to be physically redirected by that adult for not meeting the demand.

In what way is this educating children socially? How come in a regular classroom this is abuse but in a class with a bunch of disabled kids it’s therapeutic? I’m just…I’m really irritated and disappointed that stuff like this is funded by the education system.

Im not sure if I should even mention this. But when you are an abused child initially you fight back. Sometimes that fighting back lasts a week, sometimes months, sometimes years. Eventually you reach this point where you stop fighting and your brain shuts down and you go blank, almost like you separate from your body and don’t reject it. Sometimes something twitches inside from time to time to fight back, but you actually end up fighting the urge to defend yourself rather than stopping the abuse. That’s the look I saw on the kids faces. They were made to hold up dolls with happy faces “I’m happy today” because they are being conditioned to just ACCEPT what is happening to them.

I am planning on pulling Portia completely from the entire program. She’s never been to that classroom and never will, but the moment they believe she isn’t socially “fit” and needs to be in some sort of conditioning class to make her appear normal, is the moment it doesn’t benefit her. Let’s be real for a minute: the autistic brain cannot be hard wired, it cannot be cured. This is because we still don’t fully understand what autism is. You can certainly force and autistic person to look and seem like an autistic person, and autistic adults who have experienced this sort of “conditioning” all have PTSD and more.

I literally do not ever care if Portia doesn’t act “normal” socially. I don’t care if she doesn’t look people in the eyes and I DEFINITELY do not care that she doesn’t want to touch anyone or let anyone touch her. I don’t care if she doesn’t want friends or if she likes people. I don’t care if she lines up her toys when she plays with them. I don’t expect a man without legs to run a marathon and I don’t expect Portia to be this social butterfly or become a politician or something. She’s content with who she is and society has the obligation to accept her the way they except a deaf person and sign language.

I’m just feeling very irritated. It’s 2017 and there was a whole room full of children enduring therapy that doesn’t actually work and scientifically has absolutely ZERO grounds to be used in an education system. I feel like it’s 1940 and they want to treat some house wife’s depression with electroshock therapy or some gay mans sexual attraction by giving him female hormones.

If I don’t speak out against it then 10, 20, 30 years later it will still be there. It will still happen.

Can you just pray for me, the work that’s required to pull her out…it isn’t going to be easy. I’m going to look like the crazy paranoid mother. In a lot of ways because of her disability she’s basically forced to be state educated. As crazy as this sounds I’m so scared of her being forced to go to public school I’ve thought about leaving the country. Ive personally witnessed so so much abuse in the schools towards autistic children…I just can’t accept it.

the saddest thing to read in an article about parents of trans kids is “i didn’t sign up for this” like yes you did. yes you fucking did. you signed up the minute you decided to have a child and i’m fucking appalled that you even thought to say that, because having a child means loving and celebrating them unconditionally. when you decided to have a child you signed up for a trans kid, a not straight kid, a mentally ill kid, a mentally disabled kid, a physically disabled kid, and a chronically ill kid all at once and you don’t get to idealize any of that away goodbye

🌸 shout out to trans kids who are just now discovering their identities 🌸

🌸 shout out to trans boys who are saving up for their first binder 🌸

🌸 shout out to trans girls still learning to apply makeup 🌸

🌸 shout out to closeted trans kids 🌸

🌸 shout out to trans kids who don’t want to transition 🌸

🌸 shout out to trans kids w/ disabilities 🌸

🌸 shout out to trans kids of color 🌸

🌸 shout out to trans kids who can’t afford to transition 🌸

🌸 shout out to mentally ill trans kids 🌸

Y'all are so beautiful and strong. Your identities are valid and no one can take that away from you! I love you!

A piece of advice for parents of kids whose disabilities are starting to become apparent.

You’re probably going to have to deal with a lot of people who don’t respect your relationship to your child very much. You know a lot about your kid, and you’re probably going to have to deal with a lot of people who treat you like nothing you have to say matters.

You’re also probably going to have to deal with well-meaning people who say things like “you’re the expert on your kid!!!”. This sentiment can be affirming in some ways when people aren’t taking you seriously, but it can also be toxic.

Taken literally, “you’re the expert on your kid” isn’t true — and it doesn’t need to be. Even aside from disability, kids are complicated. No parent understands everything about their kid. Every parent faces confusing situations, and every parent makes mistakes. Parenting kids with disabilities tends to mean being confused more of the time. That’s ok. You don’t need to be a perfect expert on your kid. It’s both impossible and unnecessary.

There will be times when you have absolutely no idea. When your kid is struggling and you don’t know why, and strategies you’re trying aren’t working. When that happens, you’re still your kid’s parent, and the relationship still matters. You’re not going to be an expert on every aspect of your kid at all times, and that’s ok.

Sometimes when you don’t know what to do, others have useful ideas. It’s worth being aware that good strategies tend to get developed in silos. If you’re only looking in one context, it’s worth trying more. For instance, there are things medical/therapy professionals often know, things adult activists living with the same disability often know, things teaches often know, and so on. It can also be worth looking outside of your child’s disability group — resources intended for one disability are often helpful for another, and groups don’t always talk to each other.

(This goes double if your child is autistic. Nothing disabling about autism is completely unique to autism; all of it’s shared with some other disabilities. Resources associated with other conditions are often better (and less behaviorist.).

All that said — you will probably face situations in which none of that helps. Sometimes you’ll seek out all kinds of perspectives and still find that nothing you’re aware of helps enough. When that happens, you may attract people who give you a lot of bad advice loudly. When you’re worried, it can be hard not to believe people who yell at you and tell you that they are experts.

Don’t get psyched out by professionals who try to convince you to stop thinking for yourself. They’re good at sounding right in intimidating ways. They often do not actually know what they are talking about. And ultimately, you are your kid’s parent, and all parents are clueless sometimes, all parents make mistakes, and you and your child are allowed to be human.

Similarly, as your child grows up, they will grow apart from you in some ways. That’s how kids are, and that’s part of how maturity works. Teenagers do things that their parents don’t understand. All the more so, adults do things that their parents don’t understand. Even in childhood, no one can really be a complete expert on another human being. Disability doesn’t change that. It’s not going to be possible to be an expert on your kid, and that’s ok. They’re a person, and so are you.

Tl;dr “You are the expert on your kid” is too much pressure. There’s a grain of truth, but it doesn’t reflect reality — and it doesn’t need to. There are a lot of unsolved problems in disability support — and in any case, no human being can really be an expert on someone else.

I’m generally not one to piss on other people’s headcanons, and as someone who often struggled with disability accommodations at university, I can totally sympathise with those posts talking about how amazing it must be to have access to magic.

All that said, given that the institutions of Harry Potter’s Wizarding World are explicitly based on Rowling’s experiences as a single mother on public assistance in post-Thatcher Britain, I can’t help but think about all the new and fascinating ways they must have discovered to fail to accommodate people. And not just for physical disabilities - that the Wizarding World has essentially no concept of mental health care is near as anything to canon, if you read between the lines.

Like, Hogwarts must be screwing disabled kids in ways we can’t even imagine. Magic’s a knife that cuts both ways.

its so important to have disabled presence in children’s media, disabled kids grow up with really harmful messages about being burdens, ugly and unwanted and that needs to be challenged, we need to be showing disabled kids that they’re valued and amazing

like I remember a few years ago here in the UK, there was a disabled woman, Cerrie Burnell, who’s right arm ends a little past her elbow, who did some presenting on kids tv and parents wrote in and complained about her and said she was scary for children and shouldn’t be there because she was disabled

children are seen as being needed to be sheltered from the ~terrifying~ and ~horrifying~ reality of disabled people and that really hurts disabled kids and also massively contributes to adults hating and fearing disabled people since that’s what they were taught to do as kids

whether it’s disabled presenters or disabled characters, children’s media has to do more to acknowledge and celebrate disabled people

If you’re feeling bad about your kid after an IEP meeting

Content note: This is directed at parents, and it’s about mitigating damage that can be done by the stigmatizing language in the IEP process. It expresses sympathy towards parents who are feeling things that can be harmful to disabled kids (as well as a call for parents handle those feelings constructively). This post may be triggering to people with disabilities who have been harmed by these kinds of attitudes. 

The IEP process can be really hard on kids, parents, and families. In order to get your kid the services they need, you’ve probably had to describe them using some awful language. It likely violated every one of your instincts about how parents ought to describe their kids. You may have had to do it anyway, in order to get your kid access to education.

It’s pretty normal to feel awful about either yourself or your child after describing them in such negative terms or allowing others to do so. It’s wrong, and it feels wrong, and you often can’t do anything about it — and it often comes along with pressure to believe that this is being caused by your child’s disability. If you’re finding that you feel that way, it’s important to do something about it. Kids are generally very aware of how adults in their lives feel about them. Feeling that way about your kid on an ongoing basis is really damaging to them and to your relationship with them. Don’t beat yourself up; do find ways to mitigate it.

It can help a lot to remind yourself that nothing about your child’s disability causes this kind of language. No child should ever be described this way, including yours. They’re not being described this way because of the things they can’t do — they’re being described this way because the system is ableist and often unwilling to respond to disability constructively. It’s not their fault, and it’s not your fault — it’s an awful fact about our culture’s attitudes towards disability.

You wouldn’t say that a baby is failing because they’re not talking — it’s just part of being a baby. If someone said that a typically-developing eight year old was failing because they can’t write 10 page papers, most people would be outraged. Your child’s development isn’t failure either, and they deserve appropriate education without stigma or panic. They are allowed to have a body and a brain, and they deserve to be respected as a human being. Language that treats them as a collection of deficits is cruel, and doesn’t reflect reality.

Your child’s differences aren’t a failure. Their development is what it is, and that’s ok. It’s ok to be different. It’s ok to have a disability. It’s ok to need appropriate education. Their need for appropriate education is not failure, it’s just that you sometimes have to cooperate with a system that wrongly describes it that way.

One way you can show yourself that it shouldn’t be this way is to write a better description of your kid after the fact. Rewrite what your child is learning, and what you’d like them to learn. Write about what the barriers are, and what kind of help they need. Write about their rights, and where you see that they might be violated. Write about them as the child who you know and love, not a collection of scary deficits. (It can also help to write down ten of your favorite things about your kid.) Their disability does not call for freaking out. It’s just part of who they are, and that’s ok.

Tl;dr IEPs describe kids using cruel stigmatizing language that doesn’t reflect reality. Having to cooperate with them anyway can do serious damage to parent-child relationships. Rewriting a new and better description of your child can help to mitigate this damage.