No morel but , a moral.

Sensory sensitivity to food can make it difficult for Autistic people to eat an array of foods.

Growing up I loved macaroni and cheese, spaghetti o’s and peanut butter & jelly.

I ESPECIALLY loved spinach and Lima beans. My favorite thing to drink was a nice cold cup of milk.

As I got older there were things that I used to enjoy like beets that I just did not enjoy anymore.

There were spicy peppers that I could not stomach the smell of. For awhile I had mint chapstick that I used to calm stomach when those peppers were nearby.

. . . . .

The Gutsiest food that I once tried was a mushroom.

Back in the day when “Hocus Pocus” was brand new and before I could tie a shoe.

We had nights where we had deliciously cheesy slices of pizza. Sometimes with mushroom.

In those days…. We played outside a lot! Riding our bikes , playing in the sandbox ( and dirt) and the yard.

Several of my neighbors had girls my age and younger. On this particular night we were playing in the yard.

There were some mushrooms that had grown.

I thought that they were like the mushrooms that were on those delicious pizza pies.

They weren’t!

As sure as Snow White ate the apple I ate a mushroom.

For my neighbor who was an anesthesiologist one of the first cases he saw in residency was someone who had needed liver transplant because of a poisonous mushroom.

I was given a medicine to make me throw up.

When I was younger I had a lot of Cyclical Vomiting episodes.

Not the best choice I made as that put me into an episode.

My mom talked to my Dr’s that handled the care for that.

They urged us to go to the local Er.

You would think that after experience that I would not like mushrooms .

I still like them.

The moral to this story?

Don’t be afraid to try knew things and Get your mushrooms from the store!

Social Amok

I’ve had a lot of social skills support in my lifetime.

Eye contact.

Posture

Conversation, Topic.

Even with the skills that I have learned conversation can be a nightmare.

Some of what I’ve learned socially is me “masking” or mimicking what I have seen other people doing.

When the comfort of that mask comes off I feel like I’m in the spotlight.

It’s a pressure.

I wouldn’t call it crying because I’m not sad. There are tears that sweat down my cheek.

My nose starts to run.

I feel like that is when my pressure has cracked.

That mask is no longer intact.

I’m vulnerable.

It’s tiring.

I enjoy face to face conversation.

People that I have known and people new.

Sometimes because I am vulnerable socially there is amok.

Policy and change

I’ve been in charge of watching kids who were swimming under the hot summer sun.
As they splashed in the cool water they were blissfully unaware of the possible danger of drowning.

I counted and recalled the names of the children I was responsible for. Hyper-vigilantly I walked the pool deck.

The kids reunited with their parents and caregivers. Tomorrow a brand new day.

. . . . . .

I can’t begin to understand the terror felt by teachers and students as an active shooter drill became a reality.

I can’t begin to understand the fear and the understanding both teachers and students felt in their final moments.

. . . . . . .

School, The grocery store , hospitals , jobs are just a few of the places that we should be able to walk into and out of without fear or anxiety.

How? Why? Lather ,rinse ,repeat.

. . . . . . .

Background checks.

We need action.

Kids aren’t blissfully unaware.

Life shouldn’t end when you’re 8 or 9, because someone hates the color of your skin or who love.

Thoughts and prayers are failing us.

This is a poem I wrote about gun violence.

You don’t know the fear, of staring down the barrel.

Pulling the trigger.

Click!

Hide?

Run?

From the other side.

Liberty and Fun!

Silence swallows laughter.

Lives changed.

The after?

Fight!

Respect!

Our rights.

Liberty and fun.

Rights extinguished by someone!

Staring down the barrel of a gun.

Never!

Again.

Silence swallows laughter.

Lives changed.

The after?

Sensitive knows

It’s easy to fall head over heels for a furry face!

We met Lucy when we were training her as a puppy to become a Future Guide Dog.

Sometimes that “Tail” changes

Lucy it turns it out had some allergies.

Skin testing, shampoo’s and baths , eating only a special food were all things that we did along the way. Shortly after her first birthday we were able to have blood work done that checked for different allergens.

She wasn’t allergic to humans or peanuts but there were a few other allergens that she was allergic to.

Routine allergy shots have improved Lucy’s life and Lucy has improved ours.

We adopted Lucy! ❤️

I know there are dogs that with scent training that have been able to sniff out drugs or cancer.

I feel like after my dad’s esophageal cancer diagnosis in 2019 that Lucy knew that were times when he wasn’t feeling well.

Lucy is a very cuddly dog but, whenever anyone has been feverish she quickly moves away.

Lucy loves to share the heat from the heating pad when in use.

Recently my dad was taking a quick nap on the couch. As he awakened Lucy came over put her front paws on for a minute or two and then lay down on the floor beside him.

My Mom who checks Dexcom readings routinely told my dad that there was a shift in his blood Sugar

Lucy has never been trained in recognizing scents.

I don’t think she needs to recognize those scents to be sensitive to them.

I think the time she spends with us makes it easier possibly for her to pick up on the changes with our bodies.

Lucy’s story may be different than what was originally intended.

I think that this chapter is beautifully written.

World autism day 2022

Today is world autism day!

I can’t tell you what the experience of having Autism Spectrum is like for other autistic people. I can tell you what is like for me.

I mask. (Not just in pandemic terms. ) It’s not something that I realize that I am doing . There’s so much that go into social interaction and what I have learned through that by the time I have gotten done with social obligations I am exhausted!

I feel pain differently. When I was 8 years old I broke my foot in two places. I walked on it for two weeks before I got in to the doctor.

I put up with pain for too long . It’s to hard to recognize that it is there.I get to the point sometimes where I meltdown because the pain I have snowballs out of control.

Dating and Having a relationship isn’t something that is coming easy for me. It is discouraging and It gives me anxiety. It’s hard when your not at the same level of experience as your peers.

I’ve had some cool life experiences. (Advocating in Washington DC) I know that my ideas and my creativity are just few ways that I show my capability.

“You draw what you see” is what I was told by one of my art teachers/mentors. My brain allows me to find the different lines and shapes needed to sketch. I’m good at finding the detail a picture has.

I’m nurturing and good with animals. When it comes to animals I feel like I have a gift. Dogs and Cats like and trust me.

These examples are just a few of the ways in which I experience autism first hand.

This Autism acceptance month listen to my voice and listen to the voice of my fellow Autistic self advocates.

90 minutes of normalcy

June 2020

June of 2020 was when the pool reopened.

Their had been no swimming since the beginning of March 2020.

I turned to running , riding my bike and doing some “Biggest Loser “ tv show workouts with weights to stay active.

From January of 2020 to Early March of 2020 I was swimming for 60 to 90 minutes and doing 20 to 30 minutes of weights afterwards.

Swimming is a sport that I have done for a long time.

In world where things can be very sensory overloading and where I’ve masked socially as an autistic person, Swimming is my retreat. It is my calm.

When the pool reopened in June 2020 there was hope.

Instead of an open swim like there had been previously swimming was by 45 minute reservation.

The cool waters of the lap pool were a welcome refuge from the hot summer sun.

2021 brought the first 100 mile swim challenge .

Still on a rollercoaster of sorts when covid positivity rates climb I turn to activity at home. Zumba,walking,running ,the elliptical , biking and weights have been some of my activities of choice.

March of 2022 has brought back an open swim.

For that 60 t0 90 minutes when I’m in the pool I’m free.

2022 welcomes another 100 mile swim challenge.

It’s a chance to challenge myself. A chance to build and show my strength .

It feels good to be back!!

The [Disability ] Skin You’re in!

She’s a beautiful person! A Victoria’s Secret model from Puerto Rico. Her name is Sofia . I wonder how many of the men & women who have seen her photo would feel that she is beautiful from the chest up or when wearing a sweater. Without the alluring appeal of the bra would they still notice Sofia? Would her Disability matter more ?

The sad truth is that YES, it would matter.
Her ideas, Her goals , Her accomplishments are all important.
Disability and Capability are still going to be judged.

Metaphorically speaking a person should be accepted and found appealing in whatever skin they’re in.
A Disability should not matter more or less.

Love for the WIN!

Part of a mixed media collage art piece that I made which features different goals and motivating quotes that I have.

I know that there are many things right now that hold a lot of importance and require resolution.

Disabled People STILL are NOT able to get married and keep their Healthcare and Social Security Benefits.

SSI and SSDI are tools that help Disabled people who are unable to work or that can not work full time.

We have seen in the past few years How VITAL Having Healthcare is especially to Disabled people who may have preexisting conditions and underlying comorbidities .

Yes, Human rights, Foreign affairs , and Supply shortages are defiantly some big issues!

Why can’t we have a WIN?

Disability DOES NOT mean an inability to LOVE!

With Disability there is Capability!

Let Love WIN!

Let Disabled People Marry without losing their benefits and healthcare!!

Deep Pressure = Sensory Satisfaction

Lucy was the 5th future guide dog puppy that we had trained. All of the puppies that we have trained had something special about them and we adored them.

So Itchy at 5 months
Her allergies
Alopecia on her paws from her allergies

Lucy was career changed after tests , medication and a food challenge showed that her itchiness wasn’t conducive to her working as a guide dog. At a year old Lucy was able to be tested for allergies.

My family adopted Lucy.

5 months before Lucy was born our Beloved Chocolate Lab Bailey had passed away.

Lucy has the humor, love and food motivation that the Labrador breed is known for.

A torso dog not a lap dog
Napping on dad’s feet
Lucy sitting on my shoulder

I think it was fate that Lucy ended up with us.

Something that Lucy does a great job at is “Deep Pressure”. The calm and happiness that I get from the weight of her laying on me is what made me want to get a weighted blanket.

Lucy has provided comfort and cuddles when my dad has been tired from chemotherapy.

Lucy trying to get some heat from the heating pad.

Lucy has snuggled up to me when I have struggled with joint pain. She loves the heating pad.

As much as Lucy loves the heat heating pad when I was sick with the flu and running a fever she moved over next to me because I was too warm for her.

I know there are people who train or have their dogs trained to provide ‘deep pressure” in over stimulating situations.

Lucy just naturally does this and I think we are lucky to have her.

World cancer day

Today is “World Cancer Day”

Growing up I saw my grandparents as they faced Cancer diagnosis’s. Sickness , pain what a person might picture when they thought of cancer.

January 2020

Esophageal Cancer

In January of 2020 attached to a pump that distributed Chemotherapy into his body my Dad worked on small engine repair in the garage.

“Like normal”

Like before.

He craved sardines and ate copious amounts of banana pudding.

Getting back to eating solid foods and not overfilling a smaller stomach has been a learning curve.

Trying to get enough calories in. That’s a struggle when you’re as active as he is.

Progress is made . Forward.

Backward.

We enjoy the jokes , the laughter.

2 years that have brought us closer together.

Thankful for Physician’s and science that make treatment possible.

Chemotherapy, Immunotherapy and scans fill dates on the calendar.

Anxiety.

Sickness and pain have had their moments.

Not every Cancer diagnosis is the same.

Not every person is the same.

Adapting to the “new normal” of treatment that doesn’t end after the tumor and cells dissipate.

Enjoying the moment.

Dec 2019 a month after surgery