shepandem

[shepandem]

My caregivers surprised me with a new friend! He's a Pillowfort weighted dinosaur, and I love him so much!

His name is Buttercup Lemonade Gumdrop, but he just goes by Buttercup, or Gummy to his friends. He holds the title of being the Smallest of Beans, Most Precious of Babies, First of his Line.

He may well end up with a feeding tube to match mine 🤔

[shepandem]

One thing I hate about autism is the random fears so many of us seem to develop, or keep, long past the age where our peers have outgrown them.

I can't stand thunderstorms, and feel like such a baby when I'm the only one at my adventure group who's panicking because dark clouds are approaching.

I've been wanting to work on exposure and desensitization for a long time. My ABA therapist has wanted to wait until I was better adapted and feeling more comfortable in my new host home. We're finally going to start soon. I'm really nervous, but tentatively hopeful at the thought of not having to confine myself to the basement for hours every day, because guess where has a ton of thunderstorms in the summer? Where I live, that's where!

[shepandem]

This is Pippa, my Calico Critters baby penguin. I made her a tiny AAC out of modeling clay, and drew the buttons on with acrylic paint marker.

Calico Critters/Sylvanian Families is developing into my latest special interest, which is a problem, because they're expensive! 😭

[shepandem]

if you're comfortable sharing, can we see the rest / more of your custom boards and flowcharts and the like? they're both super cool and super helpful, as we need those sorts of supports too but are currently working without help on our aac

- CL, @dogdenhoarde

The video ended up being almost 28 minutes long, and was too big to post here. I uploaded it to YouTube and have the link below.

The social stories page is where I'm putting digital button versions of the social stories my ABA therapist has started writing for me.

Let me know if you need more explanation on any pages, organisation, etc!

https://youtu.be/Dx0vXCnTr4M?si=6jeaNSDHtAqI6sL3

[shepandem]

Hi. Saw on a recent post that you use crutches to walk and use AAC device. How do you carry the device? I understand that they can have straps (mine does) but don't they whack the crutches as you walk? You don't have to answer this if you don't want to. I'm just asking as I feel like I have to choose between crutches and AAC and I'm just wondering if you'd be willing to share your solution. (Sorry if this sends twice. My wifi isn't great so I don't know think it sent the first time)

Most of the time I just use a regular strap, and my AAC bumps my leg when I walk. If I know I’ll be walking a longer distance, I have a harness that I wear. It holds the device with two clips close to my chest, and keeps it out of the way. I have pictures of it a ways further down on the blog, it comes in really handy.

[shepandem]

I grew up watching Star Wars, Star Trek and Star Gate (little me got confused a LOT) so I can see how you had a long conversation over the differences between the first two. Star Gate less people seem to know about but it's always put under the same umbrella in my mind because it begins with Star XD

My dad has watched Star Gate, but I never have. I’ll have to check it out!

[shepandem]

Your new room looks amazing!! I like the lights and fairies on the wall and the colourful organiser with toys in it. I'm so happy the transition is going smoothly and can't wait for future updates (no pressure though)

Thanks! I love it too! When I’ve moved before, it always took a while for the new space to feel like home. With this house and this room, it felt like where I belonged pretty much immediately.

[shepandem]

hello !! i have a question about host families. are host families more like parents adopting a kid, and you get to know their families and stuff? or is it just guardianship, like you live in a group home and the people just take care of you? also, did you have to buy the stuff for your room or did the host family buy it for you? are they rich? sorry for all the questions

Hi! It depends on the family, and on the person in services (disabled person). Some host home families act more like families, meeting emotional needs as well as physical ones. Others are more strictly caretakers, and don’t get as emotionally invested.

My caregivers are both younger than me, and we’re still in the process of deepening our relationship. Given this, for now, it’s more like friends living together than family. They seem like the kind of people I could develop a more familial relationship with though, especially since I have a lot of anxiety and emotional regulation challenges, and part of getting my needs met is having someone who can help me manage that.

I bought my furniture myself. I chose to replace what I had, but if I had needed a bed or dresser and such, the residential services company that employs them would have provided them for me.

[shepandem]

My caregiver C is so handy and creative! She attached a magnet to an allen key and bent a metal washer to slip into a gap in the handle of my crutch so I always have the key to tighten the crutch handles, like carrying a jack in the boot of your car!

She loves inventing little contraptions and fiddlibg with things. She's just like my dad in that way, theyre both super smart!

[shepandem]

She is my voice.

I've spoken a total of three single mouth words in the last 36 hours, and in that time, I've shocked myself with how communicative and sociable I've been.

I engaged in and even started multiple conversations with my caregiver's mom, who is still very much in the early acquaintance circle in my rings of relationships. I remembered to ask her questions about herself, and she was patient and waited for me to respond.

My dad always told me that the more I practised conversation, the easier and more fun it would become. This is the first time my anxiety has been low enough to make a real attempt at practising, and for the first time, I can see that he might have a point.

[shepandem]

Experiment update: I ended up saying about 50 words out loud because I had to make a phone call to my doctor, and doing it myself was easier than trying to explain the details of what I needed to my caregiver and having her relay them.

Other than that, using only AAC all day felt really good! It felt natural and instinctive. When I had something to say, I reached for it without a second thought. There was no impulse or sense of need to speak verbally. I knew I could trust my talker to provide everything I needed to communicate.

I was even able to have a long, ongoing dialogue with my caregiver about Star Wars, which she's introducing me to. I'm a die-hard trekkie, so we compared notes on the shows' similarities and differences.

The best part, which I'll never take for granted, is how everyone, even my caregiver's parents, who I met for the first time today, treats my talker as perfectly normal, and react no differently than if I had spoken verbally. AAC users, myself included, are all too familiar with being spoken down to, ignored, and treated as incompetent, because of how we communicate. Finding people who just treat us like people is such a relief.

I'm going to continue to transition towards making AAC my primary communication method, and take one more step closer to being my best self.

[shepandem]

Today I’m setting myself a no-stakes challenge, more of an experiment out of curiosity, if you will. I’m seeing if I can go all day communicating with only AAC, no mouth words at all. I’m counting how many mouth words I say using a counter clicker, and I want to measure how I feel at the end of the day, to see whether it made any difference to my energy levels.

It has already made a big difference to my confidence. I have always had severe social anxiety around meeting new people and having to engage with them in my house, but the parents of one of my host home providers came to visit today, and not only did I have minimal anxiety, I was able to talk to them via my talker, contribute to the conversation, and be my amusing, witty self. They just left, and I don’t even feel tired or run down like I normally do after an hour and a half of being in the presence of strangers. I’m proud of myself!

I’ll report on my findings regarding word count and mood right before bed tonight!

[shepandem]

I wanted to wait until my room was completely finished before taking pictures, but I'm too excited to share! Here's the progress I made today!

My host family built all my furniture for me!

[shepandem]

I have the same problem with people ignoring me and my AAC and just speaking to my caregiver. Even if I’m the one who asks a question, they give the answer to my CG and it drives me crazy. My speech therapist helped me make this card that’s velcroed to the back of my talker, so I can hand it to people when they start being ableist in their communication.

Okay I have been trying to sleep for an hour but can't so I think i have to name this and since tumblr is my public journal I'm doing it here.

Went to hardware store with caregiver today.

Got paint for living room. To get paint need to have person mix the color. Person was clearly queer and noticed me and caregiver as queer as well, had the "i see I'm among family" type interaction, was lovely

But

During the like. 10 minutes. They did not pay attention to a single thing i said (using AAC obviously). They talked a lot to my caregiver. But. They sure weren't talking to me or acknowledging or responding to a single thing I said even when I thanked them at the end.

And. It sucks that queer moments are ruined by ableism. I still am happy to see someone out and about being queer and having that lovely interaction

But I'd honestly rather interact with a cis-straight person who is communicating with me, than an lgbtqia+/queer person who isn't acknowledging my communication. Like. That's not even a question.

So.

I'm sad, I guess. That's what I have to say. I wish the interaction could have just been good, and not have such a sour center.

I am going to try to allow for the possibility that they just did not hear my AAC. It's possible I guess. It wasn't loud enough that I needed earplugs tho and that is usually the measure of if someone within 3 feet can hear my device at loudest volume! But some people are hard of hearing. So. Trying to give benefit of doubt since it had multiple sounds happening.

(But honestly like. If a person can hear what my caregiver is saying they should be able to hear what my device is saying at same range. They were not speaking loudly! We were so close! The store was was quieter than normal! I wasn't wearing earplugs in a public building that's how quiet!!! (I needed them in parking lot and every store ever more of the time!))

And also this kinda thing happens all the time which is why I am more jumping to sad.

It sucks being ignored.

It sucks not being able to speak.

It sucks not being able to partake in normal conversation when I want to!!!!

Everyone learn your local sign language and stop being a dick to people who you view as developmentally or otherwise mentally disabled!! We are still people and have thoughts!! Stop being a dick to people who can't speak. Be patient when someone is using AAC of any sort (speech device, letterboard, communication cards, gestures, etc). Make the effort to communicate with us.

[shepandem]

Guys, it’s happening. IT’S MOVING DAY! My host home family is coming in an hour and a half, and we’re loading my stuff up into their cars, and taking it to our new home! It will take more than one trip to get everything moved, and we’re doing one trip per day, but my mattress and my most important stuff, like my bathroom supplies, tube feed supplies, and favourite toys are all coming with me today.

I’ll take pictures of my new room as I get it set up! Tonight will be my first night there! I’m so excited!! 😄

[shepandem]

Transcript: "My EF [executive functioning] therapist helped me make another new flow chart yesterday. I want to show it to you.

When I am faced with change, I can choose...

Power Trail, or, Garbage Lane.

This choice means I think about...

What I can control.

How I can manage big feelings.

What is exciting.

This choice means I think about...

Ways I have no control.

My negative feelings.

Ways things could go wrong.

It helps me remember to be positive and flexible when things change."

[shepandem]

October's so CUTE!!!!! Now I want to go make one but idk if I have the right fabric :(

Thank you! 😁 He’s just made of regular polar fleece, which is pretty much the most ubiquitous fabric available besides cotton. Regular cotton fabric would work as well, but you’d have to reinforce the stitches against the weight of the beads, and the tassels will fray unless you hem them. That’s why I like fleece; it doesn’t fray!