Yesterday and social skills 

I want to warn you that this is has violence. Not a lot but if you’re easy upset maybe be careful reading. I’m writing this because I need to do something and because I have some questions if anyone can answer them.

Yesterday at 0230ish in the morning I had a migraine. I was going to get a special medicine when the pharmacy opened. So special I can only have 6 a month. Me and Allie wanted to sleep but my body could not be still so she had to help keep it from hurting itself. The music next door was super loud with boom boom boom. And loud voices. After all the time I learn the steps to ask them turn it down. I put please on my Dynavox app (see pic for message). I slowly manage to get up and walk and knock on the door. I don’t think they heard me for a bit because they kept yelling. I don’t know what they was saying. Then a person open the door and me push the button to speak. But the person hit me a few times. I don’t know how much because I started a flashback. To clarify I did not hit back. I went to cover my face and drop the iPad and the screen cracked. At some point I heard myself screaming. I calmed down ish and got up from the hall floor (I was curl into a ball) and crawl into my room. There was blood on my nose and my eye was funny color. I took a pic to show the housing lady because I didn’t know what to do. I had another flashbacks and according to my pictures it took 30minutes or so to calm down. When I did I swing and took a picture of the message to show her to and sent. I could not sleep. Hours later I sent the only word I could think of -mew. Her came and took me to police and then hospital. They took lots of pictures and talked a lot. I’m could not keep up with everything. At some point I got to leave. They took me to a place and I got to get a frappé from Starbucks 1st (my brekky because I had only had water all day). But there was a problem and then another lady came – I think also from the program. She was going to fix it, but then the person would not take me because of Allie. Even when we show it was against the law. So they took me somewhere else. I was scared to go outside but Allie needed to potty, so after some time I made it and we went behind the building fast and back inside. In my head I keep thinking of the time I was kidnapped. I keep expecting to be hurt again. When people hurt me before they followed me and keep hurting me. I tell myself he is different but I don’t know. He’s really tall and maybe 2 times my lbs. Anyway I could not sleep good and when I did it was super bad dreams so awake is better. Allie needed to walk again this morning. It took me a long time, I started to cry even before I was dressed(which made worse because my mama used to hurt me if I cry). But we did it. I walk her to the corner. A little bit more than yesterday night. I’m telling myself when I can make it to the store I can get a stuffie. But it may take a few days. Allie is being nice about it. I think she likes the tv, we don’t have 1 at home. I tried to tell a person about what happened and sent a pic of my face from what happened. They got upset because they can’t see me (this person has seen me have a calmer flashback and made it worse because they didn’t understand so I don’t want to be around them when I’m like this). They are upset that I don’t want a hug. I’m confused. I think if someone tells you they got hurt then you should be nice and help them feel better not worse. Right now every time a person steps to close I step back, everything that touches me my body try to hit to protect me. It’s not on purpose even at the hospital the Doctor was try help and my body didn’t like. Even more hard then normal. 


So I have 2 questions- 1) is it bad to ask people to turn down music?

2) am I wrong to think that since I was hurt the person should care about making me feel better? I’m kind of mad at them. Even when I told them I think they should be nice they only said I hope you feel better, and then made it about them again. (The person is a functioning adult with no major difference that makes it hard to deal with people or understand feelings and words especially at the simpler words I use)

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Aging with Differences 

I know everyone gets older. But not everyone does it the same. Some people seem to grow up slower. And some seem to get older fast. And some of us do both.   Autism is not usually considered something that gets worse once you’re like 5yr. (Rett syndrome is different.) Cerebral palsy is also not called somethings that gets worse. They are supposed to be stable with only getting better. Seizures to. 

But there really are not many studies of adults. I know of only one of cerebral palsy and aging. And it says that on average 25% of those who could walk eventually lose the ability. And from the things I’ve seen from other adults with either ASD or CP most people feel aging early, from 25-40. 

Here’s my experience. Over the last few years my body has definitely feel different. I have a harder time walking or holding stuff. My muscles are more out of control. They may decide to move, or stop working. I get more pain and tired more fast. It takes me longer to both process action and do it. My sensory overload is worst. And maybe because of seizures, I have a worst memory, not that it was good. (I’m not complaining, these are just facts. I spend more time on happy thinks. But sometimes neurotypicals put negative feelings when I use facts with no feeling.) 

But the funny part is that right now I am more independent than ever. With the help of Dynavox compass and my service dog I can do more things. The AAC is more than just a way to communicate. It has lists, schedules, videos, timers, and more. It breaks down things into small parts. I use it to figure out the day, keep on track, and even to figure out what to do in new situations using the social stories and other supports. Plus it has practice conversations. And Allie can steady me, lead me home, stop self harm, calm down anxiety, and even watch my blood sugar and heart rate, oh and knows when I will have a seizure. In addition I have a cane, and a AbleNet blue 2 switch. And because AAC is pictures based for me, it’s easier to understand and see when my eyes can’t focus enough for words. And I have learned a lot of words from it, all of which help me communicate how I feel and what I need. So now that I need it most I’m able to get more support. Oh and yes I’m sure my meds help to, at least for breathing and OCD.

 It’s funny because in a way it’s like my body decided to be old now that my mind has been set free. Like it said ok I’ve been working overtime all these years to cover for you, now it’s your turn to cover for me. (I got that phrase  from  a person who works)

Anyway the point is that even though they are not getting worse (so they say), most start to feel it worse. The effects on the body, and mind sometimes, can mean they get tired faster than a non-disabled persons’. Children who don’t have any pain may need to be prepared to deal with pain as they get older. Or those can who can walk should be monitored as they age for any changes in order to prepare for a time they may need more assistance such as a cane. Loved ones may need to keep in mind that as we get older it may look like we are worse because our bodies/minds aren’t able to work so hard for the same amount of time. We need to consider things to help us continue living best we can, and to cope with the changes- especially us that have hard time understanding things or adjusting to change. Don’t put down a adult child with differences for having problems, it’s not nice to say they are not trying simply because they used to be able to do a skill better. They can be trying the best and you’re making them feel worse about something they already feel bad about. This happens a lot to adults on the spectrum, and those who had milder CP as people think we’re being attention seeking or asking for pity party or being manipulative (some may, but most aren’t). Nobody prepares us or our families for aging. Mostly because they don’t know since most of the information is for kids. 

Someone like me

Today I had a new thing happened. For the first time ever I had a conversation with someone like me. I have not met anyone like me before, and I don’t normally have conversations even with people I do know. What do I mean like me? I mean someone on my level. I have had 4 people in my life (3 in person) that I thought of has friends. One had autism, and the others did not but had somethings else. However none of them were really on my level, they were all more better with words and social stuff and more age appropriate, even if they did not mind watching Disney with me. They were all more like caregivers to me or maybe older siblings? So this was huge. I don’t know what I feel but I cried after because of so much feeling. 

It wasn’t a big conversation. This is what happened. Me and Allie were at the dollar store and I saw a white tiger shirt. I love white tigers. When I see somethings I like I have to give the person thumb up. I don’t know why but I have to do it, probably the weirdest OCD thing I have, and the most social type behavior I normally show. So I did. And the person mom prompted them to say hi. And I froze. Then she prompted me to say hi and I did (via Dynavox). She told the person I like the tigers. And they say thank you. She prompted me to say your welcome. And she ask him if he saw Allie. He asked what kind she was. As I try to type it out he asked her if I don’t talk. At this moment I realized he must be like me. I finally said the kind. The mom say she was beautiful. And I say thank you. Then she prompted us both to say bye. It took way longer than you may think with her having to direct us both back to the conversation and help figure out what to say. 

Awhile later I wished I asked if he liked Disney. It would be nice to have a friend like me. Someone my age who enjoys Disney and swing as much as me. And who doesn’t need or want more than I can give. Someone who I could be around and for once not feel like out of place or feel stupid or bad because they have to change everything to accommodate me. Well a person, I think Allie is a pretty good friend to even if her job is also caretaker since she’s a service dog. 

In other news I have been practicing conversation with Siri. I don’t know why I started. But I’m sure he will teach me a lot about words and stuff. And it makes using the iPad easier for me. Siri understand Dynavox voice very good, actually I think better than he does most people voices. By the way the voices I use on Dynavox are both real people voices. 

The last random thing I want to share for no reason is I learned something. With some help I learned the handful of noises my mouth makes the most. The most common when I’m trying to say something sounds like Ma moo. The others are e-da, e-Ma, nenene, mmm, oo, and the new one is ta. Nenene is the most common because it comes out when I have feelings. Mmm is the same but when my body is unable to move my mouth much. Oo is anytime I see somethings interesting.  The others come out when I see somethings I like, like a bird or dog or Disney. 

I am proud of me for learning a new skill. At 25yrs old I’m learning to say thank you and have a nice day. It not as easy as you would think because it takes process what is said, what I want to say, making my hands work to find it and push it and all of this very quickly. It takes a lot of effort to work against the PTSD to get close to people, the OCD to keep think on topic, my sensory differences to process what I hear and see without be overwhelmed, and  the CP to control my motor muscles. But it makes everyone smile when I do it and I like that. I like making people smile. And I like that for just a minute I can show people that there is a person with a brain under these differences. Maybe just maybe it will be enough to make people work a little harder to help teach us with “severe differences” how to communicate instead of just working on teaching us to not have behavior. Maybe if they can learn that we are people, not robots or newborn infants, they will be a little more understanding and patience to find out who we are on the inside. What we do and don’t like, and let us help make decisions about our lives even if it’s just the clothes we wear or if want to go to the park. 

Faces

I have a very short but important thing to share. I can’t understand faces. One day I saw a person and decided I was going to draw them. But as soon as I look away I did not remember what they look like. I did not think of it much at the time. Later a friend (also with autism but more capable of some things) ran up to me and hugged me and my reflexes was to hit. After a few seconds I understood it was my friend, and explain I did not know that. They show me of prosopagnosia- the inability to see faces. I was think on this for a long time and it made me understand some things like why I could know some pictures was of me. It’s always good to understand what is different for me so that I don’t have to feel bad and so I can help new people in my life work with me. Now I can tell program why I need see they tags or friends why I don’t wave if I see them somewhere different- I don’t understand that I see them. I learn to understand people by other things like where they are or certain things they wear or stuff. But it can take a long time to learn how to know a person, and maybe take a few minutes when see them to understand it’s them especially if something change.

Obsessive thinks

I have been writing a lot the last few days. Most of it is stuff I have think about off and on a long time. Some of it is more new. So why can I type this much now? Because for the last few days all I can do is think. That may sound silly. But what I mean is my OCD is making only able to think about write stuff that I want say and understand. So much that I have not been able do anything else, except swing with Allie help because she has to go outside and knows to take me to the park. I have not been able to watch Netflix or sleep or go potty or get food other stuff. Just think and swing. Is that bad? I don’t know, this is my normal. I get like this sometimes. My therapist would tell me I’m stressed. Maybe I am, Kreed is gone and I may lose my apartment in the housing program and my grandma is dying and she is all my family even if I not see her in over 10 years but she use relay with me and I don’t have the therapist. But I am not thinking about that, not any of that. I don’t mind so bad when I’m like this. I can even learn stuff when I get like this. I have had worse times with OCD. 

   The other kind of obsessed thinks I can get are called intrusive thoughts. Those are bad, they are thinking bad things I don’t like but I can’t stop. Sometimes it’s about killing myself, I don’t want to share the others. But the point is it don’t mean I actually want to do it, but that it is like a cd playing on repeat that I don’t like. I don’t understand it good but I take medicine to help. I can have panic or anxiety attacks from these kind of thinks, and they can be related or work with my PTSD. 

Some other kinds of obsessed think are when I keep think somethings bad will happen if I don’t do something like brushing my teeth a lot or when I can only think about minions or something. Sometimes I don’t like it if I want to do something. But mostly I barely understand and it feels normal so I just accept it as me and don’t try fight it. But when it’s over I may be upset. Or if people are try be with me it can make me upset and have meltdowns.

Learning 

I want to talk about learning for a minute. Yes I need help to learn stuff and so do everyone even if not has differences. They important part is to to find out what is important and work with me. You can spend hours trying to teach me how to talk with my mouth and how to be ok with lots of noise and bright light so that I look normal. Or you can make my life better by give me a communication device and headphones and stuff to help cope with sensory so that can spend time teach me important stuff like how to understand and express how and why I feel funny, and how to make sure I always am able to remember when and how to eat and be able to. Not that people try teach me anything now. But they did.   So I did not have lots of help like other people because I was mostly homeless and abuse as child, and because when and where I was as child nobody understand about autism or other stuff. But as older I had 2 big times where I was suppose be teach stuff. 1) I was in residential for 3 years. All day everyday they try teach me to not have behaviors and to talk with my mouth. Mostly I learn to hide when I could not smile so that I not get hurt and to come over if I hear my name and just nod yes to everything. 2) for over 5 years I had a friend by me almost 24/7 and see a therapist 2 days a week. They teach me it’s ok to be me. They help me with some ADLs like not make shower water to hot and to wash clothes. They work with me to take medicine and eat and how to use apps so that I would not stay lost and ways to communicate and help remember stuff. It was not easy, we got upset sometimes. Some things took lots of years to understand even be told everyday. But I did learn stuff important stuff to survive and be more comfortable. Until I learned enough that they felt OK to leave me in a house program alone. The friend so he could finally work on himself to get a job and stuff instead of be homeless watching over me, and the therapist to spend time with his baby. There are still things I maybe can and need to learn. But I am happy to learn enough to survive.

The label choice

I have a service dog. Her vest says Autism dog. If you ask about me you will hear I have autism. I have a lot of different things, and Allie is train for most of them. So why just the word autism? And why let people know and not just have a service dog label? The word autism because it covers most of my differences, especially what you see. People hear autism and understand I may not talk and that noises are loud and that I may have trouble with stuff. And they usually know autism can have lots of other diagnosis to. And I think my life and mind is better to just accept I have autism than to make my life about a bunch of medical stuff. I don’t want to spend my time trying to go to doctors to fix everything they think is wrong. I am more happy to just be, and only work on make myself feel better by say swinging or yes some medicine like my inhaler. But I don’t want to waste every minute worry about my medical stuff or why I am me or if I am broken and need be fix. I love me.  This my life and my normal. Most Deaf people don’t want be fixed to be normal and me don’t either. This all I know, I don’t want to be a different person. 

    And I don’t mind if people know because again I love me, and because they are more understanding, but mostly to take a word from Kreeds world #nolimits. People don’t think a person with autism, well not as “low function ” as me can do anything. But they see me walking with Allie so maybe learn that even if I need some help I can do some things. I walk to the park by myself. I go in the store by myself. I may look funny to other people how I do it, but the good part is I do it. And I do it better alone because I know if I can’t be in there and can leave without need someone else, and I can put my music loud and take a long time to find something with nobody trying to talk to me or rush me. Allie just waits and when I need to go, she helps me find home. I think it would be more easy if a person took time to help me plan for store and what to get and more, but since they don’t then I don’t want them there when I need to focus really hard to get a thing and not meltdown. But I have to say Allie has made everything a lot more easy. She really helps in ways you can see like calm a meltdown and in ways you don’t like let me know I am safe.