Autism: Beautiful “Human Variation”

I wanted to share some posts I’ve come across that, for me, are noteworthy because they stray from what is at the forefront of “news”/popculture/social media feeds when it comes to autism, people with autism, and Autism Awareness Month.

For the first time, I read Dr. Ericka Price’s writing on Medium.com about a month ago. I have not spent a lengthy amount of time researching her or all of her beliefs; however, her perspective on living a life as a woman with autism is refreshing. It’s her mindset on having autism and living with autism (I don’t ascribe to agree with her on all perspectives on life in general) that draw me to her writing. I love how authentic she is in sharing what it is like to be woman on the spectrum.

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Two articles I recommend are:

Next, I want to introduce you to Steven Wiltshire, Steven creates art. Many know him from his life-like, detailed cityscapes. Steven was diagnosed with autism at three. He didn’t speak and used drawing and art to communicate. You can read a brief biography here.   Watch a video of him narrating and drawing and check out the viral video of Steven drawing Rome’s Skyline from  memory after a helicopter flight.

Some of my favorite pieces of his:

Happy Autism Awareness month. Please share in the comments. Do you have other unusual or peripheral articles, people or websites that further education on autism or help in healthy role models?

 

          “Now there are varieties of gifts, but the same Spirit; and there are

               varieties of service, but the same Lord; and there are varieties of activities,

         but it is the same God who empowers them all in everyone.”

1 Corinthians 12:4-6 ESV

View story at Medium.com

Journal Update 4.15

Good evening! (as I typed that I heard the Count from Sesame Street saying it instead of me.)

I figured it was time for an update. This week I have had to battle discouragement. Discouragement because I’m still feeling tired, but more in not seeing weight loss or the fading of the purple marks on my skin. I still have “moon face”. On top of this struggle, I had several appointments this past week and it wore me out.

The Run Down:

Monday: afternoon doctor appointment

Tuesday: Chris doctor’s appointment; Fourth Grade Wax Museum 5:30-7 pm

Wednesday: afternoon doctor appointment, stopped at Kauffman Garden

Thursday: 2.5 hour visit to GP’s office; The Fellowship Band practice

Friday: The Fellowship Band practice

Saturday: NOTHING

Sunday: Church; Fundraiser for our friend, Nicole

The Details of it all:

Wednesday at my doctor’s appointment, they checked on my nose/sinus healing.

Actually, by the time we got down to the Plaza, I was tired and wanted to be in bed. I am grateful we didn’t have to wait long. In the room, we got vitals and recorded. The doctor arrived lickity-split. We do the usual back and forth about how I’ve been and about how successful the surgery was. Once she has me relaxed and confident in my progress, she pulls out two long skinny probe looking things. She sticks one up the nostril and the other one is a microscope or something. She was pleased with the inside of my nostrils. However, she did trick me.

The nurse comes back with a release form for the procedure to pull out some packing. Yes the packing is dissolvable, but she wanted to remove some. While there was a release of pressure in my sinus cavity, it still hurt to have it pulled out. When she clamped onto the mass and started to pull it slowly, the ripping of its adherence to my tissue made me cry. All I could see was the weird probe and her forceps.  The packing looked like a prune in color and size. I couldn’t believe she was able to pull that out of a nostril. I joked about taking a picture, but decided we should spare everyone that sight.

Despite my fatigue, I couldn’t let it get in the way of the rare Missouri day. Our spring has been cold. It’s actually snowing as I type. So the 80 degree, sunny weather told me to ask to visit the Kauffman Garden. We pass it on our way home. I was able to walk around a little. We went inside the green-house type building, smelled the flowers and I got to pet the resident cat. Most of the flowers still hadn’t been planted, but could be enjoyed inside.

Flowers
Some of the flowers waiting indoors to be planted in the beds at Kauffman Gardens

By Thursday morning, my body was worn out. I was tired. I had no drive to get up and even walk to the living room, but I needed to follow up with my GP. She needed to check on my blood pressure and I hadn’t seen her since I received the Cushing’s diagnosis. It was a long wait. They were running behind. I had a lot of information to update them on. The good news is that my blood pressure is running on the low side of normal. If it continues to trend low, we can start taking me off of meds for hypertension.

So it’s been pretty much more of the same. I’m tired most of the time. My fractures don’t feel any different. I sleep when I can and dab at my nose to avoid blowing.

Have a great week!

-Crystal

 

 

Welcome Walker

I love most of the Facebook polls. If you were a teen in the 90s, do you remember the polls and quizzes in magazines? My friends and I would wait anxiously each month for latest issues of Teen, Seventeen and others. We put all of our stock into those quizzes and the truth of the data presented in the polls. I had been taking an inventory or collecting poll data myself for at least a year about the different pieces of DME (that’s hospital talk for durable medical equipment. It’s the category everything from adult diapers to mobility devices fit under). The results were inconclusive. The Walker and the cane and the crutches seem to be at a tie on which will bring the best mobility while alleviating the most pain.

Many of you know Joe and Bob.

Joe and Bob stand in rebellion of their directive to be retired.

They are the twins (crutches) who joined our family in August 2016. Before discharging me form the hospital, my doctors ordered a couple of visits with the PT (physical therapist). They wanted to check on Joe and Bob’s ability to continue to be support and pain relief during my recovery. However, I’m still not convinced they felt the gravity of the limitations of my fractures. They had to take into consideration my new restrictions, specifically “no bearing down and/or straining in any way.”

Joe and Bob stand in rebellion of their directive to be retired.

 

Joe and Bob supported me through all of this limited mobility crap. You don’t know how inaccessible the world is until you’re mobility is taken away. Bathrooms, doors, weather, crowds, aisle width all need to be taken into consideration when you determine if you’re going to go out. But Joe and Bob were unashamed, strong, unbending, although they caused the occasional armpit bruising. They are helpful in reaching across the room to turn of the light and scoot something you’ve dropped closer to you so you don’t have to get up to get it.

My PT suggested I go to the PT “gym” and try a walker, because Joe and Bob didn’t seem cut out for doing the job anymore. They needed a holiday.  It felt almost like a secret consipiricy between her and my orthopaedic doctors, who had suggested that it was my only other option that might bring me acceptable pain relife.

Well…I really fought my doctors, because I was already feeling old, run down and like I was on the downhill of life with the fractures, osteoporosis and other health problems. However, they all must have known that with the foggy brain from the surgery and the pain medicine, my guard would be down.

So I took a walker for a trial run out of the PT gym and around the floor. I was able to move faster and my laps around the floor didn’t make my lower back ache.

Here she or he is.  This is where the polling comes in! Are you as excited as I am? I need help naming Mr./Ms. Walker (I’m keeping the last name as Walker). walker

Nameless. She sits next to the bed to be used to help me get up and move around the house.

We’ve talked about names. We’ve discussed adorning her with duct tape, I personally joked about a white plastic basket with flowers and streamers like you put on a bicycle, but why not?

Now is your turn to help me out. Take the quiz below and help me choose a name and adornments for our new addition.

What's My Name? (It will keep the last name "Walker")

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What should I decorate my walker with?

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2 Weeks Out: Journal Update

I have received many texts, messages and cards asking how I’m feeling.

I answer truthfully, “I feel like crap. I’m exhausted and sleepy nearly all of the time and I have a headache that feels like a sinus headache. At its best, it only hurts when I move (this includes just moving my head up/down and left/right).

The looks I get when I tell someone this face to face are more than surprise. It’s shock. I’m not sure if that’s because in pretty much every surgery/procedure the expectation is that the patient’s quality of life and overall health should be improving. So after they close their gaping mouths, or if I’m responding via written communication, I let them know I am grateful, but this was as is to be expected.

Even I have to remind myself at those times when I’m feeling exceptionally run down and in pain, that this is what we want and it is what is expected for at least the first six weeks after the surgery AND I should expect it every time we step down my medicine.

Other ways my life is altered right now is the fact that I have to go to the bathroom every two hours. I’m releasing all the water I’ve been retaining due to the tumor. sleeping flat, on my sides, or on my stomach are only tolerable for a short time, if at all. No bending, stooping, straining or bearing down. I cannot sneeze/cough. If I have to i need to leave my mouth open. I cannot bear down or do any straining at all.

So, two weeks out my recap:

I’m still tired; but can only sleep for about 2 hour blocks of time before I need to get up, use the bathroom.

Headache is still hanging on and I have times throughout the day where the severity is as bad as it was a few hours post surgery.

My ice pack is still my favorite bedtime companion. It relieves a lot of the pain in my head.

What other questions do you have? Today i have my follow up with the ENT. Praying for good things and for her to see healing.

In two more weeks, I will update you maybe with some pictures of changes that are taking place as my body remembers what it should feel like with out the stress hormone at sky-high levels all of the time.

Lastly, I want to thank everyone in our home group, The Fellowship, our church family at Cornerstone, and my other friends who have been a source of physical, mental and spiritual support. The group who deserves a big shout out is my work family, Moreland Ridge teachers and staff. Today I was surprised with gift cards and gluten-free snacks to aid in my recovery.

Please take and receive my heartfelt gratitude for each one of you who have reached out, prayed, and read my blog. You all are important to my family and me.

 

Blessings,

Crystal

courtesy of “Today 20 Minion quotes” Follow the link to see it on its orgiinal site. https://bit.ly/2IJFZsf

 

Cushing’s Surgery Photo Essay

We arrived at the Marion Bloch Neurosurgery Institute at St. Luke’s a little before 6 AM. The nurses were ready to see me. Excited, kind and fun they made the prep ahead of time peaceful. I was accompanied by my cheer squad: Mom, Dad, Chris and the kids. They let everyone come back and wait with me in pre-op and they were all able to be there while each of my doctors came by and talked about the procedure and answered any questions. Afterwards, I had some trouble with keeping my oxygen up, so I spent a little extra time in recovery and then made it to my room, N215. I had the best nurses and nursing assistants. I am putting a little slide show on–the week in pictures.

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Blue Bully Breaker: Autism Awareness and Compassion

Our daughters (and many of my students) inspire my husband and I every day.  As we’ve survived to adulthood, you realize growing up is a challenge for everyone. It’s hard when you fall in that average range of kiddo and even more difficult if you are an outlier. Add in a culture dominated by instant gratification, instant notification, and a lack of face to face connection, growing up can downright suck, because “normal” seems to change more frequently. When you had the swirling cultural changes and having a diagnosis of something (like Autism, ADHD, or a medical condition), growing up almost seems deadly. April is Autism Awareness Month which touches our family through our beautiful daughters, but also through my work as a special education teacher.

What does it mean to figure out the world when you’ve also got some diagnosis of being different hanging over you like a bloated cloud?

This is how it feels to be our 11-year-old daughter many days. 20180326_185258_HDRShe holds it all together to fit her puzzle piece into the public-school institution puzzle, then the community puzzle, the friendship puzzle, the family puzzle, etc. The list goes on. But these are the ones she has to consciously flip rotate and push her puzzle piece into daily.

But you know what’s cool? She’s broken down some of these institutions into manageable pieces that work with her personality and gifts. She’s created a community for herself at her elementary school. She’s got a BFF.

Zoey before Court WarmingWhat inspires me about our other daughter, Zoey, is her ability to stand up for her convictions and stay true to herself. She fights for her friends, she’s loyal, and fun. Because of her beautiful personality, inner convictions and faith, she exudes a classic beauty. Check her out before homecoming this year.

Now it’s your turn to be inspired by the many with ASD (Autism Spectrum Disorder) in our communities who carve out a life in this cult-of-personality ridden culture. Check out how my local middle school is spreading compassion:

This month our school community has embraced not only educating our immediate school community about autism, but also how being a culture of compassion, kindness and courtesy is a game changer for the success of anyone (students and staff and parents) in middle school. Knowledge can lead to power to break the cycle of bullying.

During spring break a small group of students and staff placed kindness inspired post-it notes on lockers, bathroom mirrors and walls in the halls of MRMS. Check it out on the MRMSHuskies twitter feed.

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And as a staff, we support and remind with solidarity in #LightItUpBlue. It opens the lines of communication for real sharing and listening with a result of understanding and accepting each other.

Staff Light It up Blue

Here’s the wonderful staff I get to call my work family supporting #AutismAwareness at #MRMSHuskies #WeAreBSSD

Yesterday, Monday, April 2, 2018, started off Autism Awareness month with World Autism Awareness Day. These examples are the ways the #LightItUpBlue campaign can break the cycle of bullying. Let your Blue Light shine and overcome the social narrative of isolation, bullying and hatred that dominates opinions of tweens, teens and their use of social media. #UseItForGood

I want to challenge you to really follow through celebrating compassion through the month of April. Don’t let your enthusiasm dwindle by the middle of the month and sizzle out by April 30th. By focusing on compassion, you make it about Autism Awareness and more. Learn about autism. Share about autism. Open up the conversation. Make the connections.

Just remember Autism is not who that person is. It’s a way to describe some of the attributes of a person. Just like I have Cushing’s Disease. My characteristics of having a round face, brittle bones, among others do not make me Crystal. They are just characteristics that can accompany this diagnosis. They add color to my life’s story I’m writing. My daughters are not autism. They are human beings with keen senses. Visual gifts to be artists. Allyson has above average reflexes and vision that allow her to catch the tiniest of frogs out of the miry mud surrounding my parents’ pond. Zoey has a love for and deep understanding of pets.

What are you doing to further compassion and awareness? How have you been touched by autism? Leave comments below. Let’s start a conversation and connection. Let’s spread compassion.

Thanks for reading and replying! Happy Spring

-Crystal

P.S. If you want to do some reading, these are some works of fiction I recommend (These are some books I’ve highlighted before. I feel it doesn’t hurt to remind and reread them.)

Books to read (all of these are fairly family-friendly, if read together.)

For the younger crowd:

A Friend Like Simon by Kate Gaynot

Al Capone Does My Shirts by Gennifer Choldenko

Counting by 7s (Kindle Version) by Holly Goldberg Sloan

My Friend with Autism: A Coloring Book for Peers and SiblingsMy Friend with Autism by Beverly Bishop

Rules Rules by Cynthia Lord

For the older crowd:

House Rules: A Novel House Rules by Jodi Picoult

The Curious Incident of the Dog in the Night-Time The Curious Incident of the Dog in the Night-Time by Mark Haddon