autism, communication, faith, Health, Love, Morgan

What Did You Say?

“I know you think you understand what you thought I said, but I’m not sure you realize that what you heard is not what I meant.” Robert McCloskey

Have you ever watched a video of a crying baby receiving a hearing aid? When they hear their mother’s voice for the first time, their crying stops. Their eyes open wide. They become calm at first, then smile or even squeal with delight? Then, of course, the mother begins to cry. It’s that moment of mutual connection that those of us who hear often take for granted.

If you have ever seen one of our home videos on YouTube or Facebook Live, you will see All Things Autism. What you may not recognize is that Morgan has a hearing, or rather a listening, impairment. Even though her physical hearing is intact, her ability to process and interpret sound is interrupted by something called CAPD (Central Auditory Processing Disorder). My unscientific explanation is that there is a glitch in her central auditory nervous system wiring. This is a separate diagnosis from her autism. For signs and symptoms of CAPD, visit asha.org . American Speech-Language-Hearing Association.

It is hard for Morgan to separate and make sense of sounds, especially speech. There is actually a slight delay in what she hears. When we are at home, in a one on one, quiet environment, it’s much easier for her to navigate. We’ve learned to slow down and give her time to respond. You will see she is very talkative and engaged. She is Very Able to express herself in our home environment.

Morgan and Papaw showing off an April window painting they did together.

When Morgan is in a group setting, there are lots of competing sounds and distractions. Large gatherings can be confusing and stressful. This usually stops her from initiating engagement. When she is overwhelmed, her reaction is to grunt and vocalize her displeasure, in order to get away. Or she will completely shut down, squinting her eyes, bending over and putting her head in her hands. Unfortunately for her, this makes others see her as Less Able than she actually is. When we are able to know what to expect, and provide Morgan with a schedule ahead of time, this takes down the stress and helps her be more successful.

As things speed back up again, we find ourselves stumbling a little more, trying to regain our footing in this world. I guess that’s life, with or without disabilities. I still believe the joy of a meaningful life ride is worth the learning bumps we experience along the way.

There is a giant chasm between hearing and listening. This year of slowing down has really opened my eyes and my heart to the difference. Many of us have forgotten how to listen. It takes time to really get to know anyone. It takes time, patience, and a sincere caring effort to get those moments of mutual connection, where we can all truly communicate.

We openly share our family’s journey with autism in the hope of creating understanding and acceptance for all individuals with disabilities.

Until Next Time,

Know The Hope,

Tammy

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autism, faith, friends, risks and rewards, self esteem, Uncategorized

Moving Molehills

“Disability ministry is not complete until individuals with disabilities are ministering back.” – Jim Pearson (No Disabled Souls)

I recently posted this apology on Facebook to our friends, because Morgan has such a hard time breaking her stride to say an unplanned hello. It went like this:

“When we see each other at Walmart and are trying to say hello, if Morgan doesn’t acknowledge you, it’s because you’re not on her schedule. She currently doesn’t take walk-ins.
As a long term member of her staff, I am advocating for policy changes. You’re important to us and we appreciate your patience. Please hold.”

Due to her version of autism, Morgan is prone to self isolate. This year of added isolation has definitely backed us up a few steps. Morgan is very comfortable when she’s “busy relaxing” at home. The longer we’re here, the less she wants to go out. Although we need things to get back to “normal”, I admit, I’ll have to muster up my “want to” to dust off my cheerleading pompoms again.

Morgan is 27 now. Her whole life, we’ve been “working on” something. It started with speech and occupational therapy. Then it was social and emotional skills, educational and vocational skills, life skills, and as strange as it sounds, we even have to work on Joy. Don’t get me wrong. She enjoys putting seasonal events on her calendar, painting the windows, and collecting things that are the colors of the month. But it seems to me, she only tolerates people sometimes, because we can be so unpredictable. I’ve told her that friends can be messy and loud, but they are SO WORTH IT. My constant prayer is for her to just be able to relax with people and enjoy being engaged with others, without the anxiety. It breaks my heart for her that she sees every encounter as a task. We keep pushing forward, because every little successful interaction matters.

Mamaw and Morgan’s February Window Painting

One thing I’ve been thankful to be reminded of again, during this time, is Morgan’s satisfaction when she’s accomplishing something “All Myself”. Thursday is our clean up day. As she helps change the bed sheets, wash the cloths and vacuum, I see her calm delight in doing something that she knows matters. I saw the same thing when she worked at the little sandwich shop before it shut down during the pandemic. We’ve been trying to get that feeling back again. I do believe in all of us there is a need to be needed, a need to know that who we are, what we have to offer, is valued.

Because of Morgan’s social anxiety, it’s hard to get people to understand she is very capable of doing a good job. We’ve had to beg for her to be given any opportunity. I wish I could say that’s unusual, but for many young adults with disabilities, real employment opportunities are rare. Just having that hour at the sandwich shop, a couple of times a week, was very meaningful for both of us. That hour may seem so small to some people, but seeing her feel good about her “Busy Long Day” made it worth all the mountains we had to move to get there.

The sandwich shop never opened back up. But recently, we were able to get back to Meals on Wheels. Morgan helped Papaw in the past, and now she has been given her own route. ❤️ One morning a week, I drive and Morgan “trick or treats” folks with a warm meal. As she puts on her mask, and gets out of the car, I hear her say “I can do it. It’s Izzy.” When she comes back, there’s a high five and fist bump. “I did it!” 🙂

Meals on Wheels – “Trick or Treat”

Until Next Time,

Know The Hope!

Tammy

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Uncategorized

Joy Is A Choice

“… I have set before you life and death, blessing and curse. Choose life so that you and your descendants may live,”
‭‭Deuteronomy‬ ‭30:19‬ ‭HCSB‬‬

The other day, I asked Morgan what she wanted for lunch. Her answer was “How about food?”. 😉 This was not sarcasm. This is her autism. Where many of us are grateful to be given choices, it causes her a great deal of anxiety. Why? The answers to some questions are infinite. I believe she’s actually afraid of giving the wrong answer. Morgan still doesn’t understand that her choice is just that, Her Choice. If I can ever get her to understand that, I believe it will free her from a lot of the anxiety choices cause her.

As I’ve worked with Morgan for several years on this life skill, I’ve come to realize just how important choices are for all of us. They give us independence and freedom. At the same time, they come with responsibility and consequences. Good ones build us up and bad ones tear us down. Hopefully, as we mature, we learn to make choices that are not only good for us, but respectful of others. When others respect us, they allow us to make choices too.

Everyone deserves the right to make choices to the extent they are able. Often times, the choices of individuals with disabilities are overlooked. Whenever we assume we know what’s best for anyone without offering them a voice, we may not realize it, but we’re being dismissive of that person. On several occasions, when I thought I knew exactly what Morgan wanted, but gave her the option, I found out I was wrong. 😉

God loves us so much that Even He Allows us to CHOOSE Him. If that decision was forced, it would mean nothing. As much as I want others to believe as I do, I have to remember that every person has the right to make their own decisions. My Individual Joy and Confidence in what I believe comes from knowing I’ve been given a choice, and I choose Him.

I will continue to offer Morgan every choice I can, working with her through the anxiety and OCD, because more than anything, I want her to find her own voice, her own joy.

Until Next Time,

Know The Hope!

Tammy Vice

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Uncategorized

Mockingbird Mamas

“A good intention, with a bad approach, often leads to a poor result.” – Thomas Edision

My mom has a very vivid memory from when she was five or six years old. She and a mama mockingbird had a serious misunderstanding. She saw a nest up in a tree and she felt she needed to get a closer look. She meant no harm to the baby birds, but their mama wasn’t taking any chances. That mama bird squawked and swooped down on her, showing no mercy. The next thing my mom knew, she was laying on the ground, flat on her back, with the wind knocked out of her. Lesson learned. Don’t get between a mockingbird and her babies. 😉

Mockingbird Attack floridamuseum.ufl/edu

Sometimes I can be like that Mockingbird Mama.

My daughter, Morgan, is on the autism spectrum. She doesn’t always pick up on social cues. If someone doesn’t give her an extra nudge to help her join the group, she gets left behind and left alone. She can also be a little grumpy when “too many friends” make her anxious, causing others to back away. My heart has been shredded from seeing Morgan left out on numerous occasions over the years. For that reason, it’s hard for me to leave her on her own at gatherings. And, due to all my heart scars, I can misread others’ intentions sometimes.

This was the scene. We were at a gathering with a few moms and daughters. There were two tables. Most of the girls were at a larger table. I seated Morgan with two friends at a smaller table. The moms decided to go outside to eat and visit. I turned around to see the two girls jump up to go to the big table, without a word, leaving Morgan behind. One of the girls looked back at me. I stood there for a moment, not knowing what to do, because I didn’t know if they had left Morgan without thinking, or on purpose. I took a deep breath and decided to leave her there to figure it out. I admit I said something to the moms outside, hoping someone would look in on things. It turned out, when they checked, Morgan was at the table with all the girls. I realized they were probably waiting to see if I was leaving before they asked her to join them.

As much as I want to help Morgan navigate every situation from the safety of “my nest”, I know she needs her father, her sister, her grandparents, friends and community in order to fly. I can only be her mother. Once again, I’m having to remind myself to give her and others a little more space, a lot more grace. Hugs of understanding to all the other Mockingbird Mamas out there.

As for my mom, she’s still bird watching, with a better understanding of the importance of social distancing. 😉

Until Next Time,

Know The Hope!

Tammy

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autism, caregivers, communication, faith, family, friends, leap of faith, Love, Morgan, Uncategorized

Everyone is Essential

“But quite the contrary, the parts of the body that seem to be weaker are [absolutely] necessary; and those parts of the body which we consider less honorable, these we treat with great honor;… And if one member suffers, all the parts share the suffering; if one member is honored, all rejoice with it.” 1 Corinthians 12:22, 23 and 26  Amp. Bible 

When Morgan lost her ability to communicate at age 2, and was diagnosed with autism, I knew she was vulnerable.  What I didn’t know was the strength and purpose she would help me find in my life, or all the lives she would impact for the better.

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We’ve heard a lot about essential workers during the time of the pandemic.  I understand the need for those who provide vital services to continue working.  It has also been equally important for those of us who aren’t performing vital services to do the essential work of staying at home in order to avoid causing unnecessary exposure.  We all have a responsibility to do our part.

As we move to re-open things, I’ve heard reports of some who believe we should push forward and let the survival of the fittest kick in, which saddens and sickens me.  How does one go about valuing or devaluing a life?  Thankfully, in God’s economy, we are all essential.  He created each one of us on purpose, for a purpose.

My dad is 81.  He provides Meals on Wheels to folks in our area.  Our daughter, Morgan, helps him out at times.  Here’s a recent news story on the essential job he’s doing.  Homebound Meals Video

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We haven’t been given a spirit of fear, but one of power, and of love and sound judgement and personal discipline. (2 Timothy 1:7)

I believe we should have the ability, the responsibility, to move forward lovingly, bringing along the lessons we’ve been given in humanity during this time.

Until Next Time,

Know The Hope!

Tammy

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autism, caregivers, communication, faith, family, holidays, Love, peace, Uncategorized

The Shape of Things

“We’re in pretty good shape for the shape we’re in.” –  Harlan Howard

Each month Morgan and I paint a scene on the windows to represent the season.  For December we did Christmas trees.  January will be snowmen,… Keeping things simple, breaking the scene down into shapes, helps her follow along.  For example, a few triangles make a nice little Christmas tree.  We add a small rectangle for the trunk, circles for ornaments, and a star to top it off nicely.

Mom, Dad, and Morgan, recently found out how important shapes are when we upgraded her bedroom.  She helped put together the bedframe.  It looked like a nice rectangle to the eye, but when we placed the mattress on, things were so out of skew that one rail looked about six inches longer than the other.  🙂 We scratched our heads, and even measured both rails.  It was at that point we realized we needed a square tool to get it into shape.  LOL!  We’re always learning.

In this life, as much as we try to simplify things, to better understand them, there will always be unknowns.  What I know now is I don’t need to know everything.  I just need to know the One who does.  I used to pray for understanding.  Now I pray for the peace that passes understanding.

When our world seems so upside-down and out of round, when I’m worried about the shape we’re in, I remind myself of God’s heart for us.  I know His Love is Pure and Perfect, so that means we’re in pretty good shape.

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” John 3:16

Until Next Time,

Know The Hope!

Tammy

 

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autism, family, friends, Morgan, Uncategorized

Messy and Beautiful

“Sometimes you’ve got to embrace the unexpected.  The things we never saw coming often take us to the places we never imagined we could go.”  Kemmy Nola

Recently, we traveled to the coast for the Frank Brown Songwriters Festival. Our family and Logan Blade‘s participate in an annual autism awareness benefit there. We also enjoy getting some rare time for our families to visit with each other. While Logan is pretty laid back, always going with the flow, Morgan requires a schedule. There is a constant juggle of what’s “too much schedule” for her, and what’s not enough.  When I think of the differences between Logan and Morgan, I’m reminded of the saying, “when you’ve met one person with autism, you’ve met one person with autism.”  Truth!

Anxiety and OCD are kissing cousins to Morgan’s autism.  They are the enemies of spontaneity and joy.  They refuse to let go and trust that the day will land in a safe place without their orchestrating every moment, every breath.  I’ve watched them take my daughter down on countless occasions, robbing her of the ability to wait, to relax, to just enjoy being with friends.  Morgan knows friends are messy, and loud.  They often do the unexpected.  They are great at derailing her perfect plans.  I’m trying to help her understand friends are also Beautiful!  Even with all the chaos they create, they are really worth having around us.

We are always trying to find ways to help Morgan learn how to cope with the messy and the unexpected, so she can enjoy being with friends.  Our family is blessed to live in an area where there are several organizations providing social and recreational opportunities for young adults with disabilities.  They have regular gatherings, dinners and dances,…  Nothing makes me happier than to see Morgan bobbing up and down on the dance floor, weaving around her buddies.  She’s still in her bubble, but it’s the closest I’ve seen her get to popping it.  😉

Using the Arts and creativity has been another great way to stretch Morgan’s coping abilities.  Her “Messy Flag” is a pour painting, which required making a mess to create something beautiful.

We’ve made note cards from her painting to spread awareness of OCD, anxiety, and autism.  As we learn and grow, it’s always our hope to bring understanding and encouragement to others.  Follow us on Facebook Know the Hope to learn more about us, and how to get some of Morgan’s note cards.  We’d love to hear from you.

 

Until Next Time,

Know the Hope!

Tammy

 

 

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Allison, autism, faith, family, Love, Morgan, Uncategorized

The Student is The Best Teacher

“Children are a heritage from the Lord, offspring a reward from Him.  Like arrows in the hands of a warrior are children born of one’s youth.” Psalm 127: 3, 4

As I write this, my older daughter, Allison, is preparing to teach her first college course in behavior.  She’s had years under her belt as a BCBA (Board Certified Behavior Analyst), and countless observation hours as a sibling.  I have no doubt she will have valuable lessons to share with her students.  I’m grateful for passionate teachers, and I’m especially proud of this one.  🙂

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

When it comes to Allison’s sister, Morgan, I wonder who’s teaching who.  I am forever learning.  I’m learning not to compare her to anyone else, because it’s a precious waste of time and mental energy.  I’m learning not to limit her to what I know she can do now.  I’m looking at the rest as “things she can’t do yet”.  Together, we are working on our personal bests.  As I continue to challenge her, I’m learning she is very skilled at challenging me. 😉

There is a line I struggle to define all the time;  What behaviors are due to her disability, and what behaviors are within her ability to correct.  And That Line is Drawn in Shifting Sands, because Every New Person, Place, or Thing can change the equation.

Lines get blurred and meltdowns happen.  When Morgan is coming back down from a meltdown, she will often say “I was just trying to fix it”.  😦 Me too, Morgan. Me too.  When I see her stressing and I don’t see the reason, I’ve learned to ask, “What are you trying to fix?”.  Using her language helps her find her words.

For Morgan’s sake, for her independence and quality of life, we have to keep pushing that line.  We have to continue to do the hard things until they become the no big deal things.  When we come to an impasse, I remind her (and myself) to take a deep breath.  I remind her that I love her, and we can always try again.  Each time we succeed, it’s worth all the lessons we’ve both learned.

Back to Allison.  It was clear from the beginning that she was going to keep me on my toes.  I can still see her at four years old, with her hands on her hips, explaining her point of view.  We definitely bumped heads and hearts along the way.  Despite my first time parent blunders, she’s become a pretty amazing young woman.

And all this time I thought I was their teacher.  Turns out, they are mine.

Until Next Time,

Know The Hope!

Tammy

 

 

 

 

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autism, faith, family, Morgan, Uncategorized

Magical and Practical Places

“Coming together is a beginning.  Keeping together is progress.  Working together is success.” – Henry Ford

We are born into a family.  We play and learn and grow.  And as we do, so does our world, and our circle of friends.  We gather at schools and churches and ballparks and businesses.  When we become adults, we take on grownup roles.  We work, play, worship, grieve, and celebrate TOGETHER.  We are a community.

Children with intellectual and physical disabilities become adults, just like everyone else.  Once they grow up and leave school, they have the same need to continue to belong, and play active roles in communities.  Being intentional, working together, we can ALL break down the barriers that separate us.

Mary's Music

I’m so thankful we live in a community that gets it.  From employers who open their doors, hiring our young adults for their strengths, to organizations that offer special needs sports, recreation, creative arts, and adult ministries, You Get It!  We are truly blessed.  As Morgan would say, “I LOVE This Place!”

Recently our community has added a couple of places that are Extra Inviting and Super Exciting!  The first,  Mary’s Magical Place, is a park that is accessible to ALL abilities and ages.  Their mantra is “Make It Happen!” And Boy did they! 🙂

 

And PEER Place , a community based program, where our young adults can continue learning job, life, and social skills, empowering them to achieve their highest potential.  We think these places ROCK! 🙂

“The greatness of a community is most accurately measured by the compassionate actions of its members.” – Coretta Scott King

Until Next Time,

Know The Hope!

Tammy

 

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autism, dance, faith, family, Morgan, Uncategorized

A Soul’s Tale of Soles

“Walk a mile in my shoes, walk a mile in my shoes.  Yeah, before you abuse, criticize and accuse, walk a mile in my shoes.”  Joe South

I share our family’s walk through the world of autism, in an effort to create awareness, and understanding.  You might say my writing shoes were inherited from my dad, so I thought I’d share one of his writings with you in this post, along with some soul to sole picture moments.

Pictured below; Mine and my sister’s baby shoes

Little Crochet Booties by Winston Burkett (Papaw)

Little crochet booties, two feet in just one hand
I held you up and out to God, for I was one proud man
Then came little walking shoes, and alone you learned to stand
But I stood there ready, to offer you a hand
O dear child tread gently, as your walk through life you start
O dear child tread gently, you’re walking through my heart

Mistakes I’ve made a plenty, as I watched you grow
But have no doubt my love is strong, I wanted you to know
I always stood there ready when you took your first steps,
I stood there, as I do now, to offer you my help

Shoes of patent leather were awkward at their best
But they sure were pretty with your first Easter dress
Then there were the barefoot days with bruises and bandaids
When it came to childhood pranks, you sure made the grade
O dear child tread gently, as you walk through life, you stroll
O dear child tread gently, for you’re walking with my soul

Pictured below; Princess Morgan in her prom sneakers for Night To Shine.  It’s how “Cinderella” was able to stay and dance at the ball all night. 😉

Morgan Prom Shoes

Then there were the sneakers, and even baseball cleats
And tennis shoes with bobby socks, sure made you look neat
The ballet shoes that you did dance and wore the toe clear through
I stood and watched your graceful steps, o so proud of you
O dear child tread gently, as through life you stride
O dear child tread gently, for I’m watching you with pride

Pictured below; Allison and her soulmate

Allison Wedding Shoe

How about those high heels, you wore to your school prom
They sure made you look so nice, you borrowed them from mom
One day there came a wedding, your shoes I couldn’t see
The lovely dress and long white train had hidden them from me
O dear child tread gently, as you make life your own
O dear child tread gently, and you’ll never be alone

Now what is this with slippers, a child does grow within
Yes, it is my grandchild, whose love I’ll surely win
Little crochet booties, both feet in just one hand
I hold you up and out to God, for I am one proud man

Pictured below; Morgan and Allison’s baby shoes

Until Next Time,

Know The Hope!

Tammy Vice

P.S. And just for a smile, here’s a picture of the shoes I wore recently, on a busy mom day. 😉

Mom Shoes

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