Dragon Crew

Level 2 Autism | ID | Dragon Special Interest

[dragoncrewblog]

Hello! My name is Kaz.

I am adult.

I love dragons. They are my special interest. Do not know many facts just really really love. Especially like HTTYD and Toothless but love all dragons.

I like going to ren-faires and playing DnD. I enjoy creating art and doing Lego.

Diagnosed with Level 2 Autism and Intellectual Disability.

Physically disabled with Mitochondrial Myopathy. Not able fully understand what means. Know causes pain, weakness, and fatigue. Know will get worse with time and no cure.

[chronicbitchsyndrome]

whenever you stop and listen to self advocacy by people w cognitive disabilities we're always saying things like "i want to choose what clothes to wear" "i want to date without someone supervising me" "i want to have input into what medication and surgeries i get" and like that's really fucking sad and nobody seems to consider how fucking miserable it is for any class in society to be pleading for these things as a group

[dragoncrewblog]

Look what got!!!

HTTYD cookbook!

Working on cooking skill with OT.

Probably never able do independently but therapist thinks more work with food help with ARFID. Not been focus of therapy in past. Other skills to learn that more important. Now this more important so we work on it.

Now special interest connection so more motivated to try.

[disabilitywaltz]

I see lots of positivity for people who had to drop out of higher education for one reason or another. But so little for friends who are unable to have a high school diploma, or GED! (Or whatever your area's equivalent may be)

So shoutout to those who were unable to complete the "basic" education, you are important and loved and your level of education should not dictate that!

[lifeafterpsychiatry]

Like I just feel like a concerning amount of social skills advice for autistic people is written with the fundamentally incorrect assumption that 1) all autistic people could learn how to socialize normally if only they knew it was important and put in a bit of effort, and that 2) thus it is actually fine to judge the autistic people who don't

[lifeafterpsychiatry]

The thing about all the high functioning vs low functioning/masking vs non-masking disability discourse is that it isn't a case of not being believed and supported vs being believed and supported because basically none of us are being believed and supported. These terms are about how capable you are of making up for and coping with insufficient support and yes being better at this generally places you in a more privileged position than the disabled people who can't do it

[dragoncrewblog]

ID and autism make things very hard.

Pa died. Have to process and grieve but not know how.

Brain scream and meltdown lots. Know make it harder on mom. Not want to do this but no control.

When not meltdown focus on special interest. Moss support friend plush now since Pa bought for me.

All know how to do. Therapist says normal. Say take very long time with ID and autism. Take normal brains long time too.

[dragoncrewblog]

Finish all 20 dot-by-letter sheet! Got book from hospital gift shop. Choose enchanted magic set because fantasy.

[briarpatch-kids]

I wish there could be a more productive talk on access and how MUCH it affects the day to day disability experience. It always devolves into jealousy or defensiveness because the most anyone really gets is crumbs, talking about how much those crumbs can make or break a disabled person is hard. Society forces us all to live without until we literally can't anymore and then we either we either get our crumbs or we die. Then when talking about it always feels like people are implying that being forced to live on the edge is either much better or much worse than falling off and getting caught, barely.

Whole thing just sucks and I think we should all get adequate support instead of me getting crumbs to live only after nearly dying and you not getting crumbs because you haven't almost died from it, yet.

[crippled-peeper]

“is diagnosis a privilege” is such a tired, circular, pointless discussion in a world where the most damaging thing you could do to your social status, employability, and literal physical and financial stability is disclose you are disabled in any way. I will believe diagnosis is a “privilege” when people aren’t fired by the thousands every day for it or thrown out of their housing or literally murdered by their spouses or parents for it

[briarpatch-kids]

Being undiagnosed SUCKED, but being diagnosed wasn't so much of a level up in privilege as it was a funnel into a new and exciting hell. But a hell all the same. Out of the frying pan and into a slightly different frying pan but this one is greased with olive oil instead of canola oil, I guess.

[dragoncrewblog]

Hope not derailing if talk about developmental disability.

Not able say no to get autism and IDD diagnosis because too disabled. Diagnosed as young child because obviously disabled.

When got older said want to not live with parents. State said too disabled go live in hospital now. Long fight to go back to parents.

Cannot access lot of autism services because not given if IDD diagnosis even if think could help.

[dragoncrewblog]

Get to learn to make salsa! Learn with Nana and OT!

Nana gifted some of Granny’s (Nana’s mom) canning stuff.

Likely always be VERY supervised activity cause lot of risk but new OT very good and say can take many risk after explain consequences.

Really like supported decision making. Only not given earlier because “too much work” for state employee. Easier to lock away.

[crippled-peeper]

Whats a neuromuscular condition? I saw someone describe their eds that way which doesn't sound right but I'm a bit dumb so I thought I'd ask

Neuromuscular describes the relationship between the muscles (muscular) and the nervous system (neuro). Amyotrophic Lateral Sclerosis (ALS) is an example of a neuromuscular condition. Muscular dystrophy is another.

EDS (ehlers danlos syndrome) is a connective tissue disorder impacting elastic soft tissue. It can impact many parts of the body. But it is not a neuromuscular condition because it doesn’t affect the nerves. I believe that person was mistaken

[briarpatch-kids]

I've got a neuromuscular disease! So basically what makes a disease neuromuscular instead of just having neurological and muscular effects is that the problem is the *communication* between muscles and the nervous system verses having general problems with the muscles and nervous system. Like how having tight muscles because the hEDS body is made of pain colored silly putty is different than having tight muscles because the electrical signal from my brain that says "relax" isn't reaching my muscles. Both hurt, Both are tight muscles, but one is neuromuscular and one isn't.

The small fiber neuropathy a lot of people get is considered neuromuscular (i think) but thats more of "one facet of the disease is neuromuscular" instead of neuromuscular symptoms being the defining trait of the disease.

[dragoncrewblog]

Tomato plant grew very large! Got many cherry tomatoes.

Want learn canning to save tomatoes but need extra help because possible danger. Bring up to OT at next meeting.

[bebsi-cola]

all my love to other autistic people who just know jack shit. the ones who have no "infodump" locked and loaded, nothing they can rattle off the top of their head. the ones who have a specific interest in certain things but still not knowing a lot about it. autistic people who will never be able to memorise fun facts about something no matter how fundamental it is to them as a subject. the point of autistic interests are not being a secret expert on random shit, you just like it a real big amount

[status-quo-hater]

I think some of you forgot that autistic people sometimes act strange and say things that are poorly worded and speak with incorrect tone and misunderstand or miss social cues because they are autistic

[kaputtsolvi]

What I feel people frequently forget about autistic special interests is that they aren't always information based. They may simply be visual or mental

Someone may have a special interest in a show, but instead of that meaning that they will talk about that show often, it may mean they watch that show extremely frequently.

Special interests are ways of regulating, not simply encyclopedias we have in our heads. Sometimes it's watching something frequently. Maybe only listening to one genre of music, maybe it's a collection, maybe it's an action. I'm tired of it only being seen as autistic people's personal encyclopedias

[dragoncrewblog]

Love Halloween! That favorite holiday.

Lush got Summerween collection in. Enjoy bath bombs. Now that live with parents again can enjoy bath bombs.

Got Plague Doctor bath bomb!

Also got Creature of the Night shower jelly cause look like dragon trapped in jelly.

Parents don’t mind fun soaps even if harder to use.