As a child I loved watching Disney Movies. The elegance of Belle’s ball gown , The Castle with all of it’s characters , The Belle and The Beast grew fond of each other, and The race for love before the last rose petal fell. Stories like “Beauty and The Beast “ were enchanting. I know now that I’ve gotten older that there’s a difference between fairy tales and reality. As an adult there parts of my story that are more like The Beast.
I’m on the Autism Spectrum. I have struggles that I have faced. Sometimes it feels like I’m waiting anxiously for that last petal to fall. Time is fleeting.
I have strengths which help me to accomplish my goals. Self advocacy is something that I have done quite a bit of. It’s important for disability advocates or disabled self advocates to share their story. I started blogging about Various Disability and Life topics in 2017.
“Law Syndrome” isn’t something that a lot of people are familiar with. “Law Syndrome “ Prevents Disabled people from being able to have a career, get married or live a productive life. Disabled People lose their benefits from Social Security : Supplemental Social Security Income (SSI) or Social Security Disability Income (SSDI ) and Healthcare.
The Beast lives in solitude in the castle under a spell. While not animated this is the story for Disabled people. The cost of living is expensive SSI and SSDI have not seen a raise. Everyone should have access to affordable health care.
I’m a hopeless romantic who wants enchantment! Until laws change my enchantment is a fairy tale. Not reality.
Disabled people fall in love.
Disabled people work.
Disabled people get sick.
We are human beings!
Alone my voice is a pebble making ripples in the ocean. Together our voices can make waves in the ocean. Let’s break the spell that is upon us and Bring forth enchantment.
Last week I started on a medication for Rheumatoid arthritis. I have been having joint pain that has been a lot worse the last several months keeping me from running and drawing.
I really miss running!!!!
I’ve started a medication for Rheumatoid Arthritis and I’m now following the MediterraneanDiet.
Diet and exercise is something that has been a struggle for me. I’ve always been a big fan of pasta . I definitely have a sweet tooth too. I’ve struggled with binge and emotional eating . It’s easy to eat in excess those foods that I enjoy.
Looking in the mirror my eyes and the sparkle they get to them when I’m excited, My smile, the confidence that I had , my determination. These are qualities that I still have.
I’ve experienced a lot of growth and change in the past few years. If I would have had a Doctor suggest a diet that needed to follow a few years ago I wouldn’t have been very happy. 🙄😡😭
Exercise is a part of theMediterranean Diet. I have been walking , doing the elliptical, riding my bike and swimming. I hope this medication allows me to get the point where I can run again.
While this wasn’t something that was unexpected I’m an example of someone who has an underlying diagnosis. I’m thankful for the research and the time put in by healthcare workers so that I could be vaccinated .
2011 was when I first spoke out for something that I believed in.
I was tired of the false information that was being spread about autism and vaccines. I knew the affect that Pertussis (Whooping Cough ) had on me . ( a torn chest muscle, the coughing spasms that made it hard to take a deep breath, needing an inhaler )
I knew that whooping cough makes Babies (infants) really sick.
I know Autism is NOT caused by Vaccines.
I feel that vaccines are important because they protect Babies , People who are immune compromised , Vaccines protect Elderly People and Disabled People who are high risk and can’t get the vaccinations
Vaccines protect our Communities.
I Hated the fact that risking a preventable disease like Whooping Cough and spreading it to people who could die from it was something that people were willing to do because they didn’t want their child to “become “ Autistic.
Autism is not caused by vaccines.
In 2015 state budget cuts that were being threatened scared me. Again I used my voice to speak out about something that was important to me.
Cuts & Caps to Medicaid, Cuts to programs that provided early intervention for kids diagnosed with a disability, Cuts to the programs that had helped me.
I know there is a lot of talk within the autistic community about autistic burn out . I know it’s not just autistic people that feel burn out.
Fall 2018 into early 2019 was when I first felt burnt out. Like a turtle I wanted to crawl back into my shell. I felt overwhelmed and like I couldn’t keep up with pace of things. Advocacy was something that I knew was important.
It was hard for me to say NO when there was an event within the community or meeting with lawmakers. I felt like I was letting people down and I knew that there were other self advocates who would have loved to have been in my position as a self advocate.
I’m grateful for the self advocacy opportunities that I’ve had. 2019 & 2020 have had a twist to them but, I’ve had a lot of personal growth and I’m finding my niche.
The unexpected hospital stay because of a Pulmonary Embolism was difficult.
In November of 2019 my dad had surgery to remove the tumor that was in his esophagus and to construct a new esophagus. (From part of his stomach)
Eating before the surgery was hard and eating after with a smaller stomach has been a bit of a learning curve.
I read a booklet about pre and post surgery information. I read about the different chemotherapy drugs and their side effects. (There was one chemotherapy drug that stopped the process of cell division called mitosis ) I learned about how the surgery would work.
I took care of my Dad when he was having a bad day. I tried to think about what helped me when I wasn’t feeling well and used that knowledge to take care of my dad.
In 2021 my family lost a woman who was like a Grandmotherto us.I’ve experienced loss before I still react in the same way.
There are still so many questions that I that have about death and dying. Like a toddler I ask questions about “Why. How, or what”.
Both of these situations show how I process things. They show the empathy I have , the I learn about something unfamiliar.
For the past two years almost , I’ve been doing counseling every two weeks. There’s nothing weird or shameful about talking to a professional about how you feel.
It’snot always easy talking about how you feel but, It can be very helpful. There are great things like writing , music or art that can be great in helping to express your feelings.
This is a month that is dedicated to Autism Acceptance. While this isn’t a typical post like one might see I feel like it’s important because, It sheds light on something that other people may experience.
Their experience may be different but, there are still some parts of the experience we may have in common. That common ground can be helpful.
1 in54 children will be diagnosed in with Autism Spectrum disorder.
I am 1 in 144 females that is diagnosed with Autism Spectrum Disorder.
I don’t remember the appointment where I was diagnosed. When I met with the Doctor I made eye contact and I smiled. Because of those social skills that I used I was diagnosed with Aspergers which is now considered Autism Spectrum Disorder.
As a child I was very shy. My classmates answered questions for me. My teachersthought that my Parents were doing my homework for me!
I could express myself and I was smart.
In fact I’ve always been a little gifted with hyperlexia ( the ability to read at levels far beyond those expected for their age)
I’ve always been very nurturing whether it was a pet or a baby I’ve loved providing care.
I don’t think that this is something that people realize can be a strength. There is still the misconception that autistic people can’t be independent or care for others.
I’m a creative person
Writing, Photography, Sketching are some of the ways that I create.
The clay mask that I made is a good depiction of what Autism Spectrum can be like for females.
As a child while I was shy and my classmates spoke for me at school , at home I talked, I giggled. I was a different person.
Autism spectrum behaviors in females are different than males. That makes it harder to diagnose.
Physical pain is something that I feel differently
When I was in 3rd grade I broke my foot in two places I walked on it for over a week. When I am in pain I put up with it for too long. (It’s not interfering with my ability to live life) It gets to the point where the pain builds and becomes too much. I get frustrated and sad.
I trust science and medicine
I’m happy that I have received both doses of the covid 19 vaccine
In 2020 I got my TDAP vaccination. I’m happy to do my part by getting vaccinated so that I can protect those who cannot.
Vaccines DO NOT cause autism!
In 2010 I had whooping Cough. I know how important vaccines are and how they can make a difference.
This is a photo from a film by a music artist that was nominated for two golden globe awards.
The “actress “played the role of an autistic person.
Why is this wrong?
She Does Not haveautism!
Disabled Actor’s and Actresses’ should play the parts of Disabled Characters!
Thanks to the way this actress inaccurately portrayed a disability Stigmaand harmful misconceptions now are what people see when they look at autistic people.
It’s hard enough for autistic people to have jobs or work, have friendships or relationships , or Be social without these barriers.
It doesn’t accurately show who weare or what we experience.
Sensory sensitivity is not something that is fun. It’s not something that makes us look unintelligent as the picture from the moving portrays. For me it’s a time where I want to get out of that situation. I have to listen to music or take a walk.
I’m a self advocate & advocate
I participate in Special Olympics and have fitness goals
I’m good at training dogs
I’ve written all of these blog posts
When I was younger I was very shy. I had classmates who talked for me. I had teachers who thought my parents were doing my homework for me!
At home I was a different person I talked a lot.
I found my voice
I still am finding out who I am as venture further into life. I like who I am and who I am discovering.
Autism does not look like this film or this actresses’ portrayal of it.
Autistic characters need to be played Autistic Actors.
I want to see someone that brings integrity to a role because they’re autistic.
We can’t have acceptance or understanding of autisticpeople if people continue to “speak “for us
Day nine asks for some “words of wisdom” that speak to me.
“I’m still learning “ -Michelangelo at age 87
We’re never done learning. It’s something that we do throughout our lives. Learning and trying something new, accomplishing goals. These are a few things that regardless of age we are capable of doing.
“Study the art of science. Study the science of art. Developyour senses. Learn how to see. Realize that everything connects with everything else. “ Leonardo Davinci
I feel this deeply. When you develop a passion into something like art or writing it overflows into other areas of your life. You find various ways to live your passion. Knowledge provides you with better insight . You share that insight and the passion with others.
“What is done cannot be undonebut, one can prevent it from happening again” -Anne Frank
These words of a young Anne frank are a bold reminder that what we have the power to change tomorrow. We’re living in a time following the Jewish faith still results in anti semitism ( hate and violent acts that are committed)It’s been decades since the holocaust. Acceptance and religious freedom are still battles being. This is just one example of the past repeating itself. Racism and Disability rights are also wars that we still wage. The past teaches us. We need to use the present to learn from the past and to create positive change. The future has a lot of possibility. Let’s remember the past and change tomorrow.
“Everybody is a genius . But if you judge a fish by it’s ability to climb a tree, it will live it’s whole life believing that it is stupid.” -Albert Einstein
I know a lot of disabledpeople. Hard Working, Talented, Athletic are just some of the ways these people shine. Everybody regardless of disability has strengths and weaknesses. If you judge someone based on what you think their IQ is or their disability you’re not seeing the success’s they do have or the knowledge that they possess. How a person communicates is not a measure of their knowledge or ability. 🧏🏽♂️🤳🏾🤟🏽
“If you wantto live a happy lifetie it t goal not people or objects”. Albert Einstein
I’ve always had goals I have wanted to achieve. When I was youngerI really wanted to be a nurse. My math skills made that not possible. It’s taken me longer than mostto find work that I could do continuously and that I enjoyed. This has given me the opportunity to recognize strengths that I haveand to work on my weaknesses. While the path that I’m on isn’t one that I pictured myself on, It’s a path that introduced me to things about myself that I would not have otherwise discovered and I’ve set goals (running races) that challenge me, have helped me to grow into the person I am today, have given me a sense of accomplishment and made me want to work harder!
“Two roads diverged in a wood and I -I took the oneless traveled.”Robert Frost
This is from a poem but , I feel that It is important. We don’t always end up what doing we imagined in life. The different path that we’re on allows us to see or do things that we would not havedone otherwise. It allows us to meet people we might otherwise not have met. It’s paththatmight be scary or hard to go down if it’s not something that we imagined. It’s a path that we can really enjoy.
“Our live begin to end the day that we become silent about things that matter” Martin Luther King J.r.
Humans have rights. We don’t always see eye to eye on these rights. Disability,Race, Gender , Socioeconomicstatus and sexual orientation are just a few of thereasons that people have to fight for their human rights! For people fighting for human rights the struggle may be different but, that doesn’t make it any less valid. It’s important to stand up for what is right. It’s important to choose actions that are good. Using your voice is a very powerful thing. Your story can have an impact. If you don’t speak up about important rights nothing will change. Change happens when you make that impact.
Autism is a DevelopmentalDisability There are skills at certain ages that you are supposed to be able to do.
I had trouble with things like skipping , doing buttons and snaps,tying my shoes .
To help my fine (small movements ) and gross (big movements) motor skills improve I did physical therapy (big movements) and occupational therapy (small movements).
I learned how to grip a pencil the correct way, I learned how to use scissors . I did things like pulling beads out of therapy putty and working on my balance by hopping on one foot.
Everythingwas made into a game so it was fun. The things that were hard ( tying my shoes, skipping, jumping rope, balancing) were things that I practiced a lot!
I definitely got frustrated!There were some of the things the friends could do that I could. I couldn’t button blue jeans or tie my shoes for quite some time . I didn’t have the upper body strength to do the monkey bars . (The monkey bars and doing pull up are current goals that I’m working towards.)
With practice I was able to accomplisha lot!
Life sometimes has moments that bring you full circle.
Recently I started doing occupational therapy again. My dominant hand that I use for, opening a carton of milk, squeezing out toothpaste, typing , drawing and much more was very sore.
It was difficult. I missed drawing and I like being able to do things independently.
I have been learning new exercises that help my hand.
I have advocated for myself. I’ve had to describe what the pain is like. (Achy, & sharp and burning) I’ve had to describe what activities are hard.
Some of the exercisesthat I have been practicing are exercises that I use therapy putty for. No beads this time. 😃
I have been able to draw thanks to practicing the exercises and a new pencil grip.
It is frustrating when something like skipping or tying your shoes does not come easily.