The eyes see.

I didn’t know if I was going to be able to notice the changes that Cancer and the treatments for it would bring. 

Sometimes being around someone almost all the time small changes aren’t as noticeable.

I see. 

Arms and legs have lost some muscle from inactivity due to extreme fatigue.

Nausea and motion sickness brought an ashen shade.

There have been days when the pace of walking is slow. Getting from point a to point b is exhausting. 

There are moments of physical pain.  Gritted teeth. Discomfort or beyond? 

Two hospital stays felt different than when gone on trips for leisure.

Sad.

I see these small changes. I feel emotion. Living in the moment.  I forget about the Cancer. 

Regaining strength. Voice is stronger! Never one to move at tortoise speed. Always the hare. Quick! Learning a new pace.Don’t over exert!

Climbing a mountain. Still the summit to reach. A new path.

There is a HUGE misconception that Autism spectrum makes people unable to be empathetic. Empathy ,Sadness , Happiness,Anger etc..  are just a few of the many feelings that are felt. 


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Never Again.

“The people get almost nothing to eat, much less to drink, as water is available only one hour a day, and there’s only one toilet and sink for several thousand people. Men and women sleep in the same room, and women and children often have their heads shaved. Escape is almost impossible; many people look Jewish, and they’re branded by their shorn heads. If it’s that bad in Holland, what must it be like in those faraway and uncivilized places where the Germans are sending them? We assume that most of them are being murdered. The English radio says they’re being gassed. Perhaps that’s the quickest way to die. I feel terrible. Miep’s accounts of these horrors are so heartrending… Fine specimens of humanity, those Germans, and to think I’m actually one of them! No, that’s not true, Hitler took away our nationality long ago. And besides, there are no greater enemies on earth than the Germans and Jews.” -Anne Frank

Is this deja vu? No! It is something that is happening in a country that once welcomed The Jewish, The Irish, The Italians, The Swedish  and many other nationalities into our country. 

People who were born in this country are fearful! The leader of this nation saying that “instituions should be opened to house the mentally deranged and dangerous.” Has people who have lived in institutions and those who haven’t fearful!

Communities are thriving because of the great people within them! Bitty and Beau’s Coffee

People with disabilities and people with a mental health diagnosis with love and support can be successful members of our communities. 

Community living offers:

1.Choice

2. Independence 

3. Happiness

 

Living in an instituion changes a person. They lose parts of their personality. The soul that once shone brightly through happy eyes is gone. The person a shell. They have no choice and they have no freedom!  There is no happiness. 

 

Putting people who have done nothing but, be born as they are into institution is deranged! There are more people with disabilities and people with a mental health diagnosis that have bigger hearts and more compassion than the people trying to make laws that take our rights away. 

Let’s show them our Love and Compassion! Advocate for Community Living!! Contact your Congress Rep. ,Contact your Senator  

The words by  Anne frank  from another era and this story shared by the United States Holocaust Museum are reminders of the horrific effect a loss of morality can bring.

holocaust

 

The Arc of the United States position on Community living!

 

REALity 

As a child on the Aspergers/ Autism spectrum I can remember watching the O.J. Simpson car chase and the search and rescue efforts of the Oklahoma City bombing. 

Were there terrible things that happened in the news? Yes! Do I remember every terrible event that occurred? No! 

Things were different when I was little. Social media wasn’t a thing, phones had cords, movies were on VHS tape that you to rewind. As a kid I spent a lot of my time playing outside with my neighbor’s. We rode bikes,played on each other’s swing sets, played with dolls. We went to the museum for crafts and exhibits and the park for children’s performers and playgrounds.

Did our parent’s have fear? Absolutely! There were still bad people that existed and accidents or kidnappings that could occur.  The social media that distracts us today wasnt there . We were the focus.

Anxiety came from other aspects of life too. Learning about fire safety and fire drills. Stranger danger . The house  I lived in growing up had an alarm system.  It worried me as a child having “Santa Claus, The Easter Bunny, and The Tooth Fairy ” being able to come into the house. We had an alarm system for keeping unwanted visitors out yet, these strangers were okay?  Gifts and money weren’t enough to convince me. The house we lived in was also very spread out with the master bedroom on one floor and our bedrooms on another floor. After learning about fire safety I would lie in bed visualizing how I would get out if there was a fire.

Today. Things have changed. Social media has made news stories able to spread like wildfire. Good and Bad stories. The good stories are nice to see . The bad stories sit in the news for days. 

This distracts us! What we aren’t focusing on is what’s most important.

It’s harder in today’s world  for kids to be kids. The stories of tragedy are everywhere. Adults feel sadness, anger, and confusion. They want to protect their child. Along with their abc’ s and  fire drills, kids are practicing  lockdown drills. A part of childhood innocence is lost. Both adults and children can struggle with anxiety from these tragic stories.

We can’t always protect those we love from the bad. We can focus on what’s most important. We can make good happen. 

  1. Volunteer
  2. Create ( art ,music etc..)
  3. Read a book as a family 
  4. Play board games ( monopoly,clue,guess who)
  5. Go to a museum 
  6. Ride bikes


Health 

Cancer.

One word can be a very surreal and scary thing. Especially when it affects an immediate family member. 

Life goes by extremely fast. Nothing is forever and that includes life.

Here are some things that I feel are important to remember:

1. Do talk to a professional.   Talking to a counselor or a psychiatrist is a healthy way learn how to understand and process your emotions in a healthy way.

2. Physically    Your loved one may change because of medicine that are getting or because of a surgery that they have undergone. They may be more tired. They are still the same person they were before on the inside and they love you just like they did before. 

3. There are people through these hard times that are there for you and Support you. Your counselor, your friends , your family. There is someone in your corner who understands what you’re going through and will be there for you.

4. Don’t  give up on your goals, the things you are passionate about, what makes you happy. You can’t stop doing what you enjoy because your family member is sick.  Be creative, Work hard, Enjoy life.

5. Don’t  take things that someone else says personally!  Your family is going through a difficult time. Stress, Anxiety, or Sadness may manifest themselves as Anger. It’s not your fault . The members of your family are going through a lot too!  They Love you!

6. Communicate   It’s important as a family to talk about what is happening. You don’t have to go into grave detail but, having that understanding that you’re not the only person going through this and that you can get through this together will lift some weight off of your shoulders.

7.  Don’t  take on everyone’s emotions!  I am empathetic.  I can tell when my immediate family members are stressed or upset. It’s hard not to feel and take on these extra emotions. Taking on these extra emotions is like taking on extra weight. Too much weight makes it hard to move! Focus on the emotions that you  are dealing with. Be understanding that the rest of your family has the same or different emotions but, don’t crush yourself with weight you weren’t meant to handle. 

8. Do  focus on Yourself.   It is important to focus on your mental wellness and your physical health. Your mental wellness and your physical health are two very important “pillars ” that are holding you up.  Tall and strong! Anxiety, Stress , and Depression can cause cracks in these” pillars” to form but, don’t let them crumble. You Are Important!  Get rest, eat good foods, exercise your mind and body. Express yourself and your emotions  in a healthy way. 


On a scale of  ? 

I think the way we rate pain needs to be revised. 

Autism makes it hard to pick up body language or idioms . In the same way that makes it hard to communicate how much something hurts. 

There are autistic people who can have a very high pain tolerance.

When your Dr examines you and asks “does this hurt” and touches your arm or leg  for someone else they say “Ow” and their face is filled with pain but for someone who is autistic and has a high pain tolerance they don’t say “Ow” and their face doesn’t fill with pain. 

That doesn’t mean it doesn’t hurt!  

When something hurts for someone with Autism who has a high pain tolerance sometimes you’re too busy with things going on in your life to realize that something HURTS.   It’s not  until every nerve in your body feels it that you are uncomfortable. It’s like a volcano erupting. This can take awhile to happen. The problem only grows worse.

It’s also hard when you can’t see something that is hurting physically .  A scraped knee you  can see because it is on the outside.  But a sore muscle , stomach ache you can’t see. 

When you have something that hurts that you can’t see sometimes you start to doubt yourself.

Is this pain real or is it all in my head?

Doubt is an uncomfortable place to be.

We need any easier way to clearly communicate pain.

Our faces might not show it but it’s there. 

Shutdown 

We taste,see, hear, smell, touch the world around us. For people on the autism spectrum sometimes one or all of these senses can be beyond overwhelming. When this happens you Shutdown! Is this like a government shutdown?  Not exactly!

I feel bad about shutting down but, I don’t feel like I have any control over it. When I have shutdown it’s like I’m racing to my center/ core.  I feel trapped. I’m inside but my speech and my movements are robotic. I’m too busy trying to escape. I try to find something to focus on that will take me away. 

It’s not that unlike the grounding technique that people with PTSD use. 

Sometimes I have to physically get up and move away. 

When the moment or moments have passed and the shutdown ends it’s like I’m breaking the surface of water. 

Everything that was muted is now clearer and I feel free.

The finest rose 

The Bachelor / Bachelorette  series has been running for quite a few seasons on abc. It’s known for it’s evening gowns, roses , drama , and the chance to find love.  

Granted the show is quite scripted..Here’s what I think would make  it better

What they haven’t had is someone with a disability that is the Bachelor or Bachelorette looking for love.

They also need more contestants with disabilities vying for The Bachelor/ Bachelorette’s love. 

Having a disability doesn’t mean that you’re unworthy or uncapable  of  love or marriage.

Have someone with Autism Spectrum

Have someone with Cerebral Palsy

Have someone who is Deaf

Have someone who is Blind

Have someone who is an amputee
There are great people out there who are overlooked because they have a disability.

Show real love.

Love between two great people.