Find a Hobby

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Attending some sort of counseling is important when going through any health crisis whether short-term or chronic. After the diagnosis of my pituitary tumor, I started to see someone to help me process through and prepare for neurosurgery. I have quit counting weeks out. I think I’m somewhere around 10 weeks or so. But I had a really rough week about a week ago. I have had new pain in both hips. I’m still searching for one doctor who will help manage my fractures and see me when I have new pain. However, I have great doctors (ENT and Endocrinologist) who in the mean time ask me about all of my health and order the x-rays and MRIs when I have these pains. So in the last two weeks, we have learned I have a fourth fracture in my right pelvis, possibly a new one in the left and fractures on both of the “wings” of my sacrum. Tomorrow I will have another MRI, this time of my sacrum to get better views of the fractures. Unfortunately, there’s really not anything more we can do except rest and manage with pain medications.

One way to cope with plans and outcomes being different from what you expect, is to focus on the positive and to make conscious efforts to participate in the things that bring enjoyment. My counselor posed this question to me after we found out about the new pelvic fracture.

“What are your hobbies?”

This made me want to cry. My list: Writing, Sitting on my patio and studying the Bible, Reading, Gardening, Playing with the kids, Mowing the yard, Going to the prayer room, Walking around gardens/parks, crocheting. Are you thinking many of these are things you can do without needing to walk? They are; however, when you factor in the exhaustion and the effects of the pain medicine on my focus even writing and reading are things that I have to do when my mind is clear and able to focus for more than five or ten minutes.

As I’ve been processing through my recovery not being what I had made it up to be in my mind, my homework has been to engage in the hobbies I can still do. My writer and teacher friend, Elizabeth, asked me at about the same time if I’d hostess an online FB party for the makeup she uses. I said sure, but wasn’t looking at benefiting from it. I was doing it to help her out and maybe try one product. She had been raving about the mascara. Well, I started looking into their products because I have such sensitive skin and eyes. It makes it difficult for me to find any product I can stand to wear and not have a reaction to. Younique is it. Right there on the page with the product is every ingredient and why they put it in the makeup. I fell in love with the makeup and learning (at 37) how to really do makeup. I thought it was going to be a chore, but instead it’s become a new hobby. It’s one I can do physically and spend as little or as much time in as I’m capable of spending. The best unexpected result is a group of ladies who know and act as though beauty comes from the inside and makeup is something we do to accessorize our beauty and express our individuality.

So what are your hobbies? What have you been saying “no” to out of fear or human judgement? Is God knocking on your heart to open up to unknown possibilities?

God promises in Jeremiah 29:1-141 to prosper you. We have to trust and keep hope. “For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, and I will listen to you. And you will seek Me and find Me, when you search for me wiht all your heart. I will be found by you, says the Lord, and I will bring you back from your captivity; I will gather you from all the nations and from all the places where I have driven you, says the Lord, and I will bring you to the place from which I cause you to be carried away captive.”

He WILL. Not he may. He WILL.

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

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

 

Cushing’s: Life in the Moment

This is life in the moment. The way I am choosing to live because this week, we learned I wouldn’t be able to return to work right now. Not sure how much I will write, if this might turn into a journal of the next 10 weeks, or just be a place for me to share whatever is on my mind or in my writing endeavors.

So here are my dog and me enjoying the spring-like weather. (we started rewatching all of Gilmore Girls, too, today).

If you want to know what is keeping me at home check out these links: My thoughts/journey has been similar to this patient, although the weight gain has been more drastic and I have nearly all of the symptoms/conditions. They finally added them all together to get the answer!

What is Cushing’s

Sacroiliac Joint Dysfunction

Thanks for reading! Reply with your questions. I want to educate, so others don’t suffer as long as I have.

 

Dad Heart

Hi! Happy Father’s Day! I hope you’re enjoying it.

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This is a picture of the three “men” in my life who make Father’s Day wonderful.

While it’s a day to celebrate my husband and my dad for their unconditional love, sacrifice, strength, and care, it’s a day for all to reflect on creation and the creator. We see His heart with His unrelenting love for us when as a parent He gave the ultimate sacrifice. He let His son go for a big purpose. If you are a parent, you know the anguish of letting go. Sometimes letting go is gradual. Sometimes its sudden.

Even if you still have young children, you’ve let go of them as they have learned to walk, started to dress themselves, gotten on the bus for the first time to go to school, etc. I am so grateful for a loving, all-knowing, all-powerful God and for his letting go.

Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ. For he chose us….

(Ephesians 1:3-5)

Then, also, we are chosen as His children; heirs to all the blessing.

He models and expresses how we love as parents and and how parents ought to love.

“How great is the love the Father has lavished on us that we should be called children of God!”

(1 John 3:1)

Whether you have a father here on earth to celebrate with or not, you can celebrate the Creator’s unusual, unrelenting, all-in love for us and His creation.

For your perusal, I’ve included something sappy, something creative and something fun for your Father’s Day enjoyment.

Something sappy: A poem I wrote to my husband:

Your Love Comes Just In Time

Your love comes just in time

Silently tears drop like heavy morning dew from petals.

Your love unconditions my sense, all logic

Erasing all thoughts, burdens, tasks

Your love was always there

Unfaltering like the sureness of the earth under my feet.

Your love always will be

Rushing and wrapping and cocooning me.

 

Something Creative: A word cloud. (This is fun app where you put in a bunch of words and it will mix them together into a shape.)

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Something fun: A video by Principal Gerry Brooks…I don’t think you have to be a teacher to appreciate it. There might be a dad out there who needs to know his gift of socks, underwear and ties isn’t the worst he could have gotten.

 

 

 

Autism and Non-family Socialization

Social awkwardness and me go hand in hand;  which has its share of cons and pros for my kid. It’s been 4 years since my kid has been invited to a birthday party outside of any  for family members. Four short years; they have been agonizingly lonely and sad for me and a bit for her.  I have prayed fervently for a best friend for her. For community for her. For fellowship with her peers. I fought the public realm a bit, but tried to make them accept and facilitate social skills and community.

It didn’t happen. It was not a situation or battle we felt we were meant to fight at the expense of progress, growth, and security for our child.

Prayer and Thanksgiving.

“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” I Thess. 5:16-18

It. Changes. Everything.

I am learning about fellowship this year. I’ve fought it. Hated the word even, because if you’re around Christians for any sort of time, it’s been a buzzword for the last decade or so. It’s been commercialized and sold as the part that’s been missing. The part that’s going to make Christianity whole. Make it perfect. (News bulletin: as long as we are on this side of glory and Christ’s return, his church will not be perfect)  Second Corinthians 12:9 says, “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

When my close friend posed hosting a small group of people for fellowship and even called it (the) Fellowship, my stomach tensed and cringed. I have always felt awkward and like I never quite knew what my role was and is supposed to be…I’m broken. I’ve had a very blessed life, don’t misunderstand (I am an only child. My parents love me unconditionally. My parents sacrificed a lot and still do for my happiness…My list of blessings stretches much farther than my hurts.) But I still had some deep cuts…

My list of cuts (I love lists and post it notes to put them on):

being obese most of my life; Poland’s Syndrome; endometriosis; having your relationship with your step children undermined and severed for several years; loss of fertility; dealing with grief of going back to work when you thought you’d finally made it to stay at home and homeschool; a chronically ill husband; fighting his denied disability; breaking my pelvis on the first day back to school for teachers; being out of work for 3 months; receiving a diagnosis of severe osteoporosis at 35 years old; being unable walk/clean and play with my kids; on crutches for 10 months with no end in sight; going into my last doctor’s appointment thinking I would get a report of some healing on the 4 stress fractures, but instead learned I have a fifth; making medical decisions for myself and my spouse who continues to get sicker and lose weight (while I gained).

It doesn’t do much for identity and self-esteem (another bad word in the traditional Christian community that needs a whole other blog to discuss).

So fellowshipping and feeling like I fit in any small group seemed impossible, and how was I supposed to naturally facilitate that for my child? But whatever, I thought, this is us. This was my close friend, a best friend. We’ve been friends for over 20 years. He pretty much knows me as well as anyone. So I felt safe; safe enough to try it on, anyway.

Yeah…God designs us each unique for a specific purpose at exactly the right time in history.

Then I have Allyson who has the gift of hospitality and this crag sized desire to be with people, make others happy, and make sure others know how amazing and joyful living is…but who has autism and sensory needs. Yeah…God designs us each unique for a specific purpose at exactly the right time in history. So the thoughts run in my head, what will she be able to do? Will she need extra supports? It’s a pool party. She’s a good swimmer. But the last time she went to a bday party (that wasn’t for family) she asked to sharpen pencils the whole time. The mom knew her well and knew how to and when to include her.

But today, I wondered, what should I do? Do I get a present for her to take? What does this child need or want? Do you still buy presents in our culture of instant gratification? What is the going rate for a birthday present? What’s the protocol for hanging out when you don’t know the family well these days?

So I did what anyone with social media would do. I stalked…I mean vetted out the guest list by asking my daughter about the kids she was hoping to see and comparing the two lists.

(Hopefully I’m not the only mom out there who’s done this to protect their child who has been bullied and has special needs.)

And then I’ve never been good at knowing the social rules of the upper middle class, so how do I teach her the rules?

In the end, not only was the birthday girl a nice, good friend, but the two children she played with the most at recess where there, too.

The social, unspoken rules didn’t matter.

I believe prayer mattered. It prepared her’s and my hearts.

My lesson:

But what you’ve taught me is following societal norms and/or rules are not true fellowship.

Love is and when you come with love and joy, the rest doesn’t matter.

 

Body image and shaming

I don’t think it’s coincidental, that while sitting in church last Sunday, I was inundated with ideas about how to build up women in my community, whether that be face to face or in my writing. Body image and body shaming have been a bit topic this week. If you don’t know about the controversies over Red Shoes and the Seven Dwarfs, you can check out this article.

One of the things I felt the Lord urging me to do is post video of myself and my journey of just being a girl. This is as much for others as myself. I struggle with body image. I struggle with feeling adequate at work. I struggle with knowing I’m doing the best job raising my kids. I struggle with trusting others. 

We have become so accustomed to and approving of the photoshopped and edited world that people are commodities and objects, void of soul and spirit. We think that posting and talking about only what “perfection” is and that it is actually attainable is normal and healthy.  We are making ourselves physically, mentally, and spiritilually ill. 

Ladies, it’s time to take back the world and build rather than break.

Here’s the real deal on a Friday morning with no editing or photoshopping or filters.

Hoping my journey through being a lady, navigating the new world of technology helps others. #BodyLoving #gifted #TruthAboutWhoIAm
12 prayers for body image 

scriptures about body image

To my bff and person

We rarely get more than fifteen minutes to spend as friends…playing a game, watching TV, gardening, or playing music together. 

There has been an interruption or distraction of children or social media. But since Chris’s last hospitalization, our life has become more intentional on how we spend our time. 

Chris this is for you, and the changes you’ve made since being hospitalized after your surgery. 

Thanks for taking a chance on a movie (made from a book) I wanted to watch. 

Tonight was a rare treat for me.

Thank you for helping me transplant the house plants….again…

Thank you for understanding my craziness to try and complete the project outside before the storm blew through this morning. 

Me and my person. (Who happens to be my bff and husband). I’m lucky to have you, Chris!
***There is no big lesson, profound teaching. Just the simple thanks I needed to give publically to my husband. (and maybe you’ll see the ease of seizing the day. 

Living Resurrection Hope

There was little time for the weekly stand-around-and-chat session after church. It was Easter service and the children’s pastor had planned and epic Easter Egg hunt between services. Every child at service got a bag of candy, too. She picked out each piece carefully, so she knew she could eat it with her braces. She picked out others specific to what she knew her family liked to eat.  As soon as she saw her step-brother, she forgot about herself and gave him the whole bag.

And then time came for the hunt at Cornerstone…Pastor Joe counted down.

5 minutes

3 minutes

1 minute

20170416_103336_HDRShe’s there in pink, orange, blue, neon yellow dress, complete with pigtails and her Tinkerbell Easter basket.

The children lined up across the field. Their weight of anticipation bent the marking tape protecting the egg field. The children ages from just barely walking to 12-years-old waited, plotted and planned their attack routes. Allyson sought out the golden egg. She’d seen the prizes–one was the exact same bowling set her brother had looked at Saturday at Mardel’s and wanted for our family.

She had the determination to get the 20170416_103443_HDRgolden egg and win a prize.
And she did.

She got the egg; she picked the bowling set.

“This is real love–not that we loved God, but that he loved us and sent his Son as a sacrifice to take away our sins.” 1 John 4:10

The hunt was over, prize won, and we loaded up with their overflowing baskets of plastic orbs. We followed our scheduled activities: having a meal together, playing at the park, and feeding the ducks and the geese.

kids geese park

But something was upsetting her. It seemed we were always walking on egg shells, it was the attitude and arguing taking over our lives again.

Every single one of the 100 eggs she and her brother gathered had candy she couldn’t eat with her braces.  She keeps them in–her emotions and anxieties. The despair over having given up the only candy she could have is held inside by our 10-year-old. And watching her brothers eat a couple of pieces of the sticky stuff, built up. When we got home, it happened.  We had already expressed in many ways she could have candy when we arrived home. It would be hard for any kiddo. She had waited all afternoon, but she couldn’t wait any longer.

She sneaked an Easter egg from the hunt (filled with the candy she couldn’t have) into her room and got caught.  Then she lied about it.

Melting down ensued. Crying, screaming, huge tears. But she couldn’t articulate, she couldn’t pinpoint the emotion to express. She cannot pinpoint the way to react and ask for help. We’ve been working on not lying and what it means to deceive. But the biggest and most important hurdle is discovering the heart attitude motivating the behavior.

It took chipping away at the small things to get to the heart (excuse the pun) of what made her lie and deceive. What was making her believe she wasn’t lying and deceiving us? (This is incredibly difficult, time consuming, life consuming in the moment when you have a child who has language concerns.) It was worth it. It was worth every loud, sad, angry, frustrating, curious second to find out what was motivating her behavior and what had made her grouchy for much of our afternoon out.

In her sacrificial love for her older brother and family, she had given much for a 10-year-old and was disappointed to find that the candy she had kept from her Easter eggs was 100% off limits for a girl with braces. She felt anger, regret, sadness, conflict, because in her heart she knew what she did was kind, true and loving.

She modeled the love of our God who gave his ONLY son (mamas who have dealt with the loss of a child or fertility know the weightiness of the word, only). Sacrificial, true love. She displayed love that doesn’t see the flaws of a fallen world, but sees the object of its affection as whole, pure, and desirable. Just like God. Just like Jesus.

Thank you, Allyson for modeling sacrifice and resurrection today and every day. We love you.

“And walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.” Ephesians 5:2