ReUNITED and it feels great

March 2020 was the last time we had a Special Olympics practice.

The goals we had for spring and summer games were put on hold.

It wouldn’t be long right?

Non essential work and social activities were halted.

We missed our friends who up until then we regularly saw.

No high fives, Relays or festive hand drawn pictures given out to friends .

A week.

A month.

Over a year!

A lot can change in a year. Your appearance, The people around you.

We endured the loss of one of our dedicated coaches.

Restrictions that kept everyone healthy , kept everyone apart.

Today

We came together!

Strength and conditioning ahead of springs “track & field “ season.

Nothing is for certain as of yet.

Our dreams are filled with our goals for competition .

The masks hid our smiles.

You didn’t need to see someone’s smile to see their joy.

Eyes held excitement. Laughter was contagious.

We were together !

“Special” interests

Autistic people are passionate about hobbies, sports , art. We tend to learn and store a lot of information about what we are passionate about.

It wasn’t something that I saw in myself.

I have interests that I like to learn about and retain an abundance of information on!

1. Art Photography, Sketching , Painting. I could definitely talk your ear off about different artists, different styles of art, and my interpretation of art.

2. Dogs Dog body language & behavior , Dog breeds, Neonatal puppies , Guide dogs. There’s a wealth of information that I have there that I like to share.

3. Anatomy paired with Biology, and some Zoology there are some cool facts that I have learned . I have been able to combine some of my favorite interests art & anatomy with my sketching.

I recently got a book that has three of my favorite things Swimming, Anatomy and Art ( I can practice drawing the illustrations) As an avid swimmer it is nice to see how the muscle work with each stroke.

I like when there are people who share the same interest as you.

It’s nice to learn about someone else’s interests. You might find something else that you really enjoy!

Affordable

News that awaits around the corner is the impending approval of a Covid 19 booster shot. Both Pfizer and Moderna are ready to provide additional doses of their vaccines for immune compromised patients.

Vaccines and Herd immunity (everyone than can get vaccinated , getting vaccinated) are important in order to protect immunocompromised people and babies too young to get vaccinated!

I don’t know how many it affects but, Disability and immunocompromised are two things that go hand in hand. It’s not a rarity!

I miss preCovid 19 life. Pre Covid-19 I was doing childcare, I had occasions that I got to do photography for, I took art classes and went to dances. My swimming wasn’t limited to 45 minutes at a time.

An Ogre and a hermit

Im fortunate I’m in the position that I’m in!! I don’t have to work.

Covid cases are continuing to climb! Not every disabled person is as fortunate as I am.

Disabled people that are immunocompromised still have to make the scary but, necessary choice of what is important working and risking illness or being unemployed , having your health but, not having much else.

Stimulus checks are great but, They don’t come all that often. SSI and SSDI are helpful but , the only go so far. Medication, Housing, Food, Clothing,Transportation are all things that need to be factored in. That all adds up!

Supplemental Security Income and social security disability income HAVE NOT SEEN RAISES IN YEARS!

There is so much that has changed in the cost of things like MEDICATIONS that are important to Disabled, Immunocompromised people.

Life has changed for everyone. New rules , how we interact. This pandemic is hermiting Disabled and Immunocompromised people.

This pandemic has highlighted the breakthroughs in science and research that have been made. We have seen the heart’s and soul’s of the dedicated frontline workers providing care.

Health and Heathcare are vital to Jobs and the economy!

We need Healthcare , Medications and other treatments that are AFFORDABLE.

Right now may be to premature to say but, there may some of the people dealing the long hauler covid 19 symptoms that will become immunocompromised or need to rely on disability benefits.

We need a healthcare system that isn’t overwhelmed by this influx.

Marriage Equality a Fairy Tale

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.

MMMMediterranin Diet

Overnight oats

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 Mediterranean Diet.

Eggs , Spinach, Tomatoes cooked in olive oil . Seasoning I used was turmeric,minced garlic, and oregano.
Salad with: shrimp, orange & yellow peppers, tomato, garbanzo beans and chili lime dressing

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 the Mediterranean 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 .

To the class of

I went from classes , homework and expectations to the adult world,

There was lots of excitement in the air as we lined up with the help of our teachers so that we could march into our graduation ceremony. It seemed like it took forever to make it into the gymnasium.

Many of us felt like we were adults. We were all still so young.

One by one we marched across the stage to receive our diploma’s

Achievement unlocked!

This new phase of life brought us to new places.

Whether it was going to a university or trying to find your niche.

We had more life experiences that shaped us.

That moment where we went from students to high school alumni was momentous .

Personal growth and More self awareness were just a few things that affected us as our live evolved.

Did the shy gal who felt a little overwhelmed as newly minted alum think that she would be where she is now?

NO!

I designed a card for the mayor, I gave an advocacy speech at the State Capitol , I’ve met a Congresswoman.

The journey that I’ve had post graduation wasn’t the same as a lot of peoples.

There are some pretty cool experiences that I have had!

I like the personal growth and self awareness discoveries and growth that I have had.

As a new Graduate it can feel a little overwhelming at first. You are capable! Welcome to life as an alumni!

Autistic 🔥 Burn Out 🔥

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.

No Budget Cuts

Over the next three or four years making trips down state, attending conferences , Being a board member, Meeting with elected officials really kept me on my toes.

There was a lot of information about the effect things like budget cuts would affect on programs. I tried to come up with creative and visual ways that had an impact .

Protect our care

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.

Processing .Autism

In 2019 my family found out that my Dad had Esophageal cancer. Chemotherapy and radiation came before surgery. This was all new territory. Uncharted waters that we had been thrust into.

My dad with great determination and positivity endured each treatment. He definitely would rather have been golfing or tinkering with small engine repair.

Health

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 Grandmother to 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’s not 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.

Tell me you have autism without telling me you have autism..

1 in 54 children will be diagnosed in with Autism Spectrum disorder.

I am 1 in 144 females that is diagnosed with Autism Spectrum Disorder.

First grade

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 teachers thought 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.

My Clay mask

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.

These are only a few signs of autism spectrum in females.

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.

Herd Immunity +Vaccinations = I grew up

I feel that it is important to share about who I am. There is a lot of diversity among Autistic people.

I’m not the same.

Though each experience and person is different. My experience and what I write about can help other people.

Integrity to a role

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 have autism!

Disabled Actor’s and Actresses’ should play the parts of Disabled Characters!

Thanks to the way this actress inaccurately portrayed a disability Stigma and 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 we are 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’m Creative

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 autistic people if people continue to “speak “for us

Listen

We are capable