tiggerific13

[tiggerific13]

Exciting me get new aac they help try different stuff for make work for my rare blindness disability and my IDD. It on Grid app. Top have super custom PODD 60 with metacom, middle have hi contrast Voco Chat but we need change symbol colors for me, bottom show super custom Universal Core Max. And there 2 different type aphasia grids try with after more custom

[tiggerific13]

Me same! Always stuffie y fidgets esp in my mouth y my AirPods for help

I love different textures, I need them in my hands at all times to function, I love textured tangles and slime, I also need stuffed animals with me 24/7 so anytime someone sees me, my hands are filled with plushies and my fidget toys, I’m kinda like a ferret eeeeeee

[tiggerific13]

Yes both it. Me have IDD and physical stuff. Some things me ok with different help. In my house me ok move with my wheelchair and my hand or blind cane. But me not ok go outside alone because there’s stuff me not really understand or hard time with. Things on end sidewalk most people blind and/or wheelchair good at stop. But my caregiver needs stop me because me 4 get. Me get good at put water in feeding tube but my caregiver needs make sure me take meds. Some people need help shop because quadriplegic same me but with some things grabber and stuff they ok but stores too much me but me like online but me need help with moneys stuff because math hard and me buy everything not have money for

What is adaptive functioning?

directly inspired by this post by @five-thousand-loaves-of-bread

In short, adaptive functioning is a holistic view of someone's ability to adjust and change their behaviour in different environments and situations. This is a term primarily used to discuss people with developmental and intellectual disabilities and how they fare in comparison to their peers.

Someone's adaptive functioning is measured in three domains, which is why I called it holistic. All of these domains, separately and together, can affect someone's adaptive functioning.

There's the conceptual domain, the social domain, and the practical domain.

Conceptual domain: This refers to a person's cognitive skills, including their aptitude for knowledge acquisition, logical and critical thinking skills.

Social domain: This refers to a person's interpersonal skills. That includes things like the ability to understand other people's thoughts and emotions, the ability to create and maintain healthy interpersonal relationships, the ability to understand social situations and make judgements on them, and the ability to communicate in interpersonal relations.

Practical domain: This is where things like activities of daily living would come in. The practical domain measures how much a person can carry out daily tasks independently. Yes it includes things like shopping for food, maintaining hygiene, making meals. But overall you can think of it as the ability of self-management. Being able to keep track of what you need to do and when, initiate those tasks, plan for future tasks, manage your finances and time to make tasks possible, etc. There's a lot of organisation that goes into the practical domain.

Well how does it differ from basic and instrumental activities of daily living (b&iADLs)?

While ADLs are part of how we measure adaptive functioning, they can also be entirely distinct. ADLs are about being able to independently carry out regular activities.

Basic ADLs woule include self maintenance or self care tasks that are daily necessities. Things like brushing, showering, toileting, feeding oneself, dressing oneself, walking independently, transferring oneself. These are things that are directly related to one's immediate wellbeing and basic needs.

Instrumental ADLs include more long-term maintenance and self care, like going shopping and meal prepping, managing money, managing transport to places, managing medications, managing housecare and chores. Being able to do iADLs dramatically improves one's quality of life and allows them to live independently, work jobs, and such.

When measuring ADLs, we only consider whether or not someone can do them or not. This doesn't necessarily measure their overall ability or what sort of care they will need, because that depends on the reasons why they can't perform these activities. This can be a measurement of someone's support needs, but it's not comprehensive.

For example if someone can't meal prep because they don't have the ability to grip kitchen utensils, certain adaptive equipment or pre-cut foods can facilitate them being able to do this. They still can't perform that iADL without intervention or support.

If someone can't meal prep because they don't understand that knives are dangerous and will hurt themselves, or they can't connect that chopping some carrots will eventually lead to having vegetable soup because of cognitive difficulties, or simply don't understand that meal prepping is a necessity and can't direct their attention to anything that doesn't immediately intrest them, they still can't perform that iADL. Sometimes their cognitive issues may mean that they don't have the ability to independently manage tasks that need to be doing in order to facilitate necessities such as meals. This would be because of low adaptive functioning. The support they would need for cooking might be constant supervision, or to be disallowed from cooking altogether and have other people prepare meals.

Likewise if someone has no ability to hold utensils, depending on why, they might need a different method to get food into their mouth. Someone without the ability to understand the steps of feeding, such as getting food on the spoon, opening the mouth, chewing, swallowing they struggle with the same bADL. But the intervention needed to make feeding possible would be different. A carer might have to feed them, remind them to open their mouth, close their mouth, chew and swallow for each bite.

In these situations considering only the fact that someone cannot perform an ADL doesn't really represent what support needs that they have. It's not a comprehensive measurement of support needs specifically, even if it is an indication of impairment. If we understand adaptive functioning and what it means, then we can better understand the support needs of disabled people. We will understand that someone might have low adaptive functioning but is able to do certain ADLs and someone with high adaptive functioning might not be able to perform certain ADLs. We can also understand the difficulties, barriers, and support needs of intellectual and/or developmentally disabled people.

[tiggerific13]

Me love it super much ❣️ me have American “girl” doll and ze have feeding tube and blind cane and stuff same me

I may or may not have gone on a bit of a Butterfly Pig spree in order to deck out (accessorise) my friend Mouse the cat, so now we have matching medical aids!

I painted her crutches blue and hot glued string to the cuffs as straps, and cut a length of black cord off the back of an apron to give her AAC a strap. If you look closely, you can see that she even uses proloquo2go just like me! I love that her inhaler fits in her tiny pocket! I'm going to die of cute overload! /j

The last picture is of a tiny g-tube button. She's having hers placed the same day I get mine. I'm probably going to end up doing overnight pump feeds rather than daytime bolus feeds, so my reward to myself for getting through the surgery will be a tiny matching feed pump. ❤️

[tiggerific13]

Random tip for games or math - use calendar. Me struggle with count to 4. To play game Disney Sorry there’s lots numbers. I use VoiceOver on my iPhone to read calendar numbers to help me move my piece. For practice try math we use calendar and start at maybe 1 and help me go up 2 or 6 numbers. It what they call multisensory because me need physical touch it y listen numbers.

[tiggerific13]

Me have start like play solo rpgs but it’s little hard because lots of them too much scary for me and or too much hard lots rules math but nice thing if you play solo you make rules. Me get lots different with different math some use fate dice out what call dice pool but it fun try different and make something work for me. Me struggle count to 5 but there’s some accessible dice apps help both roll because blind and quadriplegic and add

[tiggerific13]

Hi friends! Me 99% sfw, 100% Adult. Ze/zir pronouns

Multiply disabled. Needs help with all IADLs and BADLs

Me use no, low, and hi tech AAC

Please nice here my safe space online.

HSN nonverbal autistic; nonverbal =/= nonthinking

Moderate/severe IDD; delayed =/= never learns

Epilepsy, TBI, Aphasia, ADHD

Blind; blind =/= no vision at all everything dark

Quadriplegic CP, ME/CFS, hEDS, Fibro, etc

Autigender, Intersex, Asexual, Poly

Married to my Caregiver of 10+ years

Fav Stuff - AAC, Spinny stuff, Ketovie 4:1 peptide, gtube, Rifton Pacer, Stitch

Loves - Space, Animals, Slime, Music, Stuffies, Blanket, Swing

Fav TV - Barney, Tigger, Disney, Nick Jr, Sesame Street, Minions

My words change lots because my disability what aac use if it bad brain body day how much help have if autocorrect stuff help how much fast type how much time me think and go over words etc etc. Me maybe look act type “childish” but me adult

My life have super unique good and bad but me most love where at now but sometimes sad nobody irl understand me but happy tumblr have other nonverbal people with IDD and multiply disabled

[tiggerific13]

don't trust anyone who sees "healing" as being synonymous with becoming functionally abled, mentally or physically. its vital that people who will never function normally– who will never leave their parents house, who will always need a caretaker, who will never be able to work to capitalist desires– are considered and told their futures are valuable.

[tiggerific13]

Julia say: ALL AAC USERS ARE VALID!!

[tiggerific13]

Me sleep with same 2 everyday and 3 changes sometimes doll sometimes special stuffie

If you're fifteen or older an still sleep with a stuffed animal please reblog this.

My friend is embarrassed and thinks she’s the only one and I said id prove her wrong.

[tiggerific13]

i love u aac users that get overwhelmed by thier device

i love u aac users that get overwhelmed by low tech aac

i love u full time users that struggle to use aac

i love u ppl that have been using aac for years, or grew up using aac, that still struggle to use aac

i love you aac users with multiple disabilities that make it harder to use (blind/visually impaired, mobility issues, memory issues, etc)

i love you ppl that have aac on smallest or small grid size and still get overwhelmed/ frustrated

its not morally bad to have a hard time using aac, you are not a failure or bad person either. You are not alone in your struggle and your experiences and your voice should be heard within aac communities.

be kind to urself <3

[tiggerific13]

50 posts! Yay pretty me see blue most good cool it blue badge thingy

[tiggerific13]

never stop deal with this so this your periodic reminder that

⬇️

!! if you see someone write different online. unless they explicitly tell you something different. leave them alone. don’t comment on their write. don’t do anything unprompted to “help” without ask. it rude annoying we heard it million times promise. !!

⬆️

some people with language disorders. agrammatism. cognitive struggles. or write with symbol base AAC that not support grammar inflections.

yes we will sometimes write different than you use to.

yes it not “correct grammar,” you so observant (sarcasm).

no it not for fun, no it not choice, no it not writing quirk.

whatever you want say, we probably heard it million times. yes even if it friendly joke - n we appreciate you friendly. but please

great that it “actually help you read/understand better than full grammar.” some people may like you tell them that. but personally not want hear it too - my way write my disability, it about me n it not on purpose it out of my control. would rather you talk about how way break down concept (something can actually control n try really hard at) as easy understand.

“this just gave stroke/seizure/whatever ‘funny’ ‘edgy’ disability” joke. not that anyone make it would listen but. shut up. it not funny to me it not funny to stroke survivors or to seizure havers.

decide stop apologize for exist if it hard read. even if you have receptive language / comprehension / reading / cognitive / etc disability - it unfortunate but conflicting accessibility exist. (yes, do understand actually, because speak from experience.)

if you want know what am say please at least put in some effort to read it.

if after genuine try, still struggle, do what you do when you see tumblr post in “perfect grammar” you don’t understand - polite ask for explain or rephrase or summarize.

it still english, or whatever language person use. unless you actual look for it be turn different language, it still english, no you not need “translate.” (no don’t care that “translate” okay in writing quirk community because again. not writing quirk)

not “fix.”

and. understand sometimes we can’t rephrase in different way, even if that different way include still write different.

personally am allow other people answer “can you rephrase” questions without go through me first, for now, because of this. - but understand this is reluctant compromise. because:

understand sometimes we still sensitive to other people rewrite explain in perfect grammar. because have long history of people refuse put effort in read our stuff but instead always give more attention to people who write perfect, even if their writing not any less complicated than ours. because have long history of be charity case n get unsolicit “help” “translate” when we never ask.

because have long history of be forcibly spoken for n be misunderstood. because people who answer may (& many times do) get it wrong & we then have to spend more effort chase down n correct when we already struggle with communication, n that other version always spread faster than our correction.

so know other people who write different, don’t allow people rephrase at all unless go through them first. please also respect that even if inconvenient.

n on that note.

unless we give you explicit permission to you (like “you specifically can do it” or like above “can do it if someone ask,” or “anyone can do it all times”). don’t. don’t rewrite what we write into correct grammar, into perfect grammar.

don’t give random disabled person unsolicited help. it not friendly it not helpful it rude n annoying. not your charity case. who even are you. no one asked.

none. of. your. business.

not need your fix. get off moral high ground.

n like everything. there some jokes n comments that *some* people who write different may be okay with if they friend with that person make it - sometimes opposite of what this post say. if you not friend with that person then. maybe don’t.

people who write different not all same. sometimes okay or not okay with different things. but. this general see.

the first time you hear about [stuff am tell you in post] probably 456737th time we re-explain it. excuse us for be exhausted n done n our time be tired n angry n impatient.

this been a PSA.

[tiggerific13]

As an intellectually disabled person with other cognitive and learning disabilities. I am privileged to be able to have social media, and be able to put my thoughts into words even semi independently.

I accept that privilege, that I am able to advocate for myself even if it’s not through verbal words.

[tiggerific13]

Santa give me Down syndrome “reborn” from Paradise Galleries! Yes me no they not true reborn dolls me have custom real reborn. But it makes me super happy have baby with visible disability IDD. Me have 3 dolls and they all special to me. My custom reborn baby therapy. My American “girl” doll best friend because ze have blind cane and feeding tube and stuff same me. And now my D.S baby. It’s super super super nice have baby feels of me. Me not have words for what makes feel but me love hold zir or have in lap and always make smile. Autism not have look. IDD not have look. But D.s have look and it feels good show visible IDD wanted loved much they make dolls of. It super helps wen feel not really wanted for all of me IDD. Santa give good presents most every year but he amazing job it year with new doll. Oh and with new Barney cassette

[tiggerific13]

Other day me learn something and me keep think on it off and on. Me start learn how type and use AAC when me 20. Me make friend online and she have my friend all it time. Me have same caregiver for more 10 years - most of time me have use AAC with help. They most who have talk to me. All it time they say understand me. But other day we learn they have misunderstanding me because of something called word intention and people talk with feelings. All my time me have type they have think I’m say and mean stuff not my literal words. And she say she needs learn talk me without it. How much stuff have me not know because they not say it???? How much stuff have they think me say but me not???? Me know of sarcasm but how people say stuff without saying it ALL OF TIME?!?! It make feel of phrase “my life lie”. Me have 2 more new friends I’m really close to and say understand me but idk how know anybody understand me no more if people talk to all my time me know how type have not understand.

[tiggerific13]

Excited because me get new iPhone 16 pro max. Me love them because help with accessibility in lots ways from aac to seizure alerts and lots more. But 1 thing super important with devices when have seizures and stuff you need good screen protector because lots cases come with plastic things not help! Me have use am film screen protector for 10 years! And it always protect screen! Me like new OneTouch because make lots more easy get on good esp when blind and cp! And it nice new tool have for get bubbles out! https://bit.ly/404TwUi