#disabled teens

[clownrecess]

I want to talk about something very specific: "No, I didn't just speak. Calm down and grow up."

It's incredibly frustrating when people accuse me of saying something with my mouth, even though all I did was make a noise.

Maybe they told me something suprising, so I open my mouth and make a "awoh-" noise. Their eyes widen, and they jump to conclusions, shouting, "I JUST HEARD YOU SAY 'what'!" or any other phrase they think they heard. They start making a big deal out of it. But here's the thing: I didn't speak. I made a noise, a sound that may have resembled speech to them, but it wasn't. It's frustrating because they assume that every sound I make is an attempt at spoken words, or that I "secretly can speak orally" and that this was me "messing up my act".

I CAN'T SPEAK ORALLY! I did not "mess up" anything!

"I JUST HEARD YOU SAY "what"!! I HEARD YOU SAY "what"!! YOU SPOKE! YOU SPOKE!"

"Hahah, I think I just heard you say something! Beat ya at your own game!"

"RAYMOND-- Did you just SPEAK??"

"YOU SPOKE, I HEARD YOU! Don't worry, I don't care, I won't tell anyone."

These are all actual quotes people have said to me. And one of these people was a grown adult.

It's like a hurricane of misunderstanding and frustration swirling around me. Suddenly, people start demanding explanations, throwing questions, and even chastising me for speaking when I never actually did. And no matter how much I try to explain that it was just a noise, not a coherent utterance, nobody believes me. It's very upsetting when nobody believes me, no matter how hard I try to explain the situation. The weight of their skepticism feels crushing.

DISABLED PEOPLE ARE NOT PRETENDING TO BE DISABLED. I genuinely can't use oral speech. I am genuinely nonspeaking. I want to make it clear that my inability to speak orally is not a choice or an act. It is a reality that I navigate every day.

[majaurukalo]

And since today I’m on a confessional spree apparently…

I think that disabled/chronically ill children and teenagers should be allowed to feel angry, sad, frustrated, furious and whatever other negative feeling they have towards their disability/chronic illness.

This life sucks, okay? Especially for a child/teenage.

It sucks for adults too and they also have the right to feel all those feelings but children and teenagers have it rougher because they don’t have the maturity yet to understand certain nuances, to find resources that can help them mentally and physically. Their worlds are much smaller and also they have less freedom because they depend on their parents and other adults who might or might not be great supporters (and usually they aren’t).

Also, younger years are the years when you usually want to do a lot of things physically, go on adventures, travel, do tons of shit with your friends and if your body can’t do that, if you find yourself limited by your disability/illness that can totally fuck you up mentally, crash your self-esteem, your sense of worth, your dreams.

I notice this difference in me. As a disabled child/teen I didn’t know how to cope with my disability, I didn’t know where to look for other disabled people (I didn’t even want to). Now I’m still disabled as I was back then but I feel pretty fine with it, I accepted it, and I understand my worth, I found my community, I took this as my identity and know how to help others.

So, don’t shush kids when they feel like crying for their situation or when they want to scream and break things.

I would be told to stop crying because there’s no point.

Well, there is. You need to let go those feelings. You need to let them free. Otherwise you’re just going to bottle it up and in the end you’ll blow off, and it’ll be worse.

Respect kids’ need to feel awful. It’s not for the sake of drama, it’s real. And it hurts.

[clownrecess]

(Tw for implied ableism)

I want to talk about how I often feel minimized to just "the kid with the tablet", to just the disabled kid.

I post about being an AAC user a lot, because its important. Because there arent many of us openly talking about being nonspeaking online, so when people think of nonspeaking autistics, or of AAC users, they tend to think of children, because 99% of AAC users on the internet are toddlers filmed by their parents.

Nonspeaking children grow into nonspeaking teenagers, and nonspeaking teenagers grow into nonspeaking adults.

I feel like the mixture of AAC not being a very well known disability aid, and the fact that most AAC rep is of small children turns me into a bit of a spectacle; turns me into just "the kid with the tablet".

I am an autistic AAC user, and I'm also an artist, and a poet, and I am queer, and I love horror, and I love MCR, and I like doing my makeup, and I love body mods, and I have a leopard gecko, and my favorite theme park is six flags magic mountian, and I love fashion, and I paint my nails, and I am a person. I am a teenager. I am disabled, but I am still a teenager. I am not a child. I am a queer teenage boy, just as any other queer teenage boy is.

I know that society often has a hard time accepting people who are different, but that doesn't mean it's okay to minimize someone to just their disability or assistive device. We all have our own unique interests, styles, thoughts, challenges, and experiences that make us who we are.

[clownrecess]

(Tw for a brief mention of meltdowns)

I want to talk about autism stereotypes, and my experience with them.

In many ways, I am what many LSN autistics bash as being a stereotype. I am nonspeaking. I am in special ed. I have high support needs. I take comfort objects to places with me. I enjoy "childish" things. I have big and obvious stims. I have violent meltdowns. I am on the asexual spectrum (greysexual). And more things too!

In many ways I am also not what is considered a stereotype. I am gay. I am trans. I have had a partner before. I dye my hair. I have peircings. I wear a large variety of clothes, and love fashion. And more things too!

As an autistic who has lots of traits that are often bashed for being stereotypical, I feel like the autism stereotypes need to stop being treated as such a horrible thing. I am quite "stereotypical", and a lot of other autistics are too.

I do think it is a problem when the only kinds of autistics being represented are all the same. That is incredibly harmful.

But if there are lots of autistics being represented, let's not bash the "stereotypical ones", thanks!!

[clownrecess]

I want to talk about using AAC in public. This post wont have much about my personal experiences, it'll mostly be tips for AAC users using AAC in public. This post also is specifically referring to high tech AAC, not things like communication cards.

1. Being prepared is very important to successful communication in public (In general too, but in public especially!). This means making sure that your AAC device is charged and ready to use. It is also helpful to have a backup AAC in case your device malfunctions or runs out of battery. For example, you might have a printed version of your communication board, or maybe a backup app on your phone. This has been helpful for me a few times, I personally use the second option of having a backup app on my phone.

2. Prepare to probably have to repeat yourself if in a louder environment. You might need to turn up your devices volume or repeat yourself in noisy or crowded environments. It can be helpful to use headphones or earbuds to hear your device better in loud environments, I have personally never done this, but I think if you are only talking to one person, using wireless bluetooth earbuds from your device to them should work. If this doesn't work for you, and full volume still isnt loud enough, having the person you are speaking to view your message window might be helpful.

3. Be patient. Communication using AAC can take longer than oral speech. Becoming frustrated is perfectly understandable, and I become frustrated with my device taking longer sometimes too, but if you try your best to be patient with yourself, you'll likely be able to express and communicate better.

4. Use visual aids! Visual aids can be helpful for communicating as a nonspeaking person in public. For example, if you are trying to order food at a restaurant, you might use a picture of the item you want to order.

5. It is important to advocate for yourself and your communication needs. This might mean informing others of your communication needs and asking for accommodations. For example, you might ask for a quieter table at a restaurant so your device is more audible, or perhaps acsess to a charger in case it dies.

6. Practice. This tip isnt exclusive to using AAC publically, but it is really helpful for doing so. If you are learning another language, practicing will make you more efficient and fluent. The same goes for AAC! Practicing will mean you can find buttons easier, and therefore communicate faster.

7. This one.. isnt a tip. I just wanted to say that people WILL stare, and be confused, but that you are amazing, and your device is amazing. Don't be embarrassed of using AAC.

[clownrecess]

My AAC device is an extension of my body. It functions as a body part for me.

It allows me to say what I want and/or need to say. It allows me to interact with the world.

My AAC device let's me do things I couldn't do if I didnt have it. I do not want to be fully speaking. I am semispeaking, and I love that. I love the way I communicate.

AAC does not limit my communication, it enhances it.

[clownrecess]

(Tw!! Talk of food, forgetting to eat.)

I want to talk about me and my support needs.

My hygiene isn't very good, I brush my teeth once per day on weekdays and usually zero times on weekends. I shower usually once per week, I try to do more but often can't. I need to be reminded to shower that minimum of one day, or I literally just won't for even longer.

I forget to go the bathroom, so I often won't go for an entire day. I sometimes have to set reminders on my phone to go to the bathroom.

I have very little internal sensation, which is related to the bathroom thing, but it also makes me forget to eat and drink until I can barely move from how much pain I am in.

I am semi-speaking, and use AAC.

I need visual schedules, primarily for showers or I will forget to do like half the steps.

I use ear defenders, and stim toys.

I need nightlights or I'll have extreme anxiety.

My joints pop out of place a lot.

I need lots of reminders, and I HATE getting reminded but I need them or I'll forget to do anything.

I am in special ed.

I wrote this post for a reason. I didn't write it for attention, or to overshare. I wrote it to let you know that you aren't alone, and that you are not "gross" for having certain support needs. You are fantastic, no matter your support needs.

[clownrecess]

I want to talk a bit about visual schedules, and why they help me.

I really struggle with memory, for multiple reasons.

I also really like to be able to know EXACTLY what's going to happen.

Both of these things make visuals very useful for me. As well as the fact that I tend to process information better when a visual is involved rather than just text. Sure, I could have a schedule or shower instructions written fully in text, but I won't be able to understand and follow it as easily that way.

The visual I use the most is my shower visual schedule. It tells me what to do when I shower, which is very useful for me because before I got it I would forget many many steps, and most of the time in the shower would be spent by me just fully disassociating or trying to remember what to do. The visual keeps me a bit more "on track".

I don't see many teenagers or adults using visual schedules, just young children. So if you are a teenager or adult who uses them I want to tell you how cool that is /pos