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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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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autism, caregivers, communication, family, Health, holidays, peace, Uncategorized

Digesting Dinosaurs

“When eating an elephant, take one bite at a time.” – Creighton Abrams

In the 1980s, I worked as an assistant to a top notch bookkeeper named Juanita.  I was so impressed at how she approached the mountain of tasks she faced.  Each day she was greeted by endless stacks of paper on her desk that she methodically sifted through, only to have them be replaced by more of the same.  In that sea of paper, she also had the ability to put her hands on whatever was requested, without breaking out in a sweat. Just witnessing a portion of her workload was overwhelming to me.  Something in me needed a finish line.  I needed to see an empty desk to feel like I was accomplishing something.  I was letting that desk full of papers eat at me.  Thankfully she was patient with my impatience.  Whenever I would hyperventilate, she’d just look at me, smile softly and say “How do you eat an elephant?”

alebrije elephant 4

Fast Forward to 2020.  Take one young adult on the autism spectrum,  who has a great affection for routines and annual calendar events.  Add one pandemic that completely shuts down life as we know it, that reschedules, then cancels, all of those events.  AND lets make a whole new set of social safety rules that really matter a lot to some people, and not so much to others.  Oh, and in the middle of all this, just for fun, let’s paint the dining room.  Surely now would be a good time to accomplish this one thing.  This needs to be filed under “What Was I Thinking?!”  Husband called with a kidney stone, that had it’s own agenda. The memory of Juanita’s desk full of papers suddenly came back to me, and I laughed at my younger self.  I realized just how small that elephant was in comparison.  I guess that’s what Juanita knew back then.  It’s all a matter of attitude.  We can Eat or Be Eaten. 😉

I’ve Got An Attitude from the Love Can Grow project – Available on Apple Music

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As I write this, I am looking at a messy desk and a half finished dining room with paint paraphernalia scattered about.  Rudy and Morgan are in the living room watching Spiderman and his adventures.  At this moment, we are all safe and well.  I Am Thankful.  It turns out dinosaurs are also digestible, one bite at a time.

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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Allison, caregivers, communication, family, holidays, Love, Morgan, Uncategorized

A Patient Perspective

Patient (noun) an individual awaiting or under medical care and treatment

Patient (adjective) bearing pains or trials calmly, or without complaint – Merriam-Webster 

Over the holidays, my older daughter had an emergency appendectomy. Since the appendix was ruptured, she earned an extended stay in the “hospital hotel”. With the help of my parents watching Morgan, I was able to be there to assist Allison until she was ready to go home.


Following surgery, Allison spent her recovery time on a floor that was dedicated to post op patients. Soon after surgery, they had her up and walking the halls. Her husband and I took turns making laps with her. From the patients’ view, the route was two long hallways that formed the shape of a double “L”, as in H. E. …. Well you get it. Seeing the small parade of gowned patients walking the halls with loved ones, some pushing IV poles, reminded me of the Jack Nicholson Movie, “Something’s Gotta Give”. 😊

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It may sound strange to say but caring for Allison at the hospital was a little break for me. I am always caring for my younger daughter, assisting with her needs 24/7, because she cannot be left at home alone. This was not only a change of venue. Strolling through the long halls, when Allison was resting, gave me a chance to decompress. I also met some very sweet folks, gained a new respect for post op patients, AND the nurses and staff who serve them.
As I passed by each room, I heard blips of conversations; Some thankful, some not so thankful, some fearful, and some incredibly obnoxious. I heard nurses respond calmly, understanding how pain and uncertainty can wear on some folks more than others. It gave me a fresh perspective of what a blessing it is to be in my position. I’ve spoken a lot about what it’s like to be a caregiver, but I think it requires a lot more patience to be the one who’s dependent on others for their care. The waiting, the vulnerability, and for those who are unable to communicate their basic needs, the frustration of being constantly misunderstood. It was a reminder to me of why it’s so important to be a patient and compassionate caregiver.

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On a final note, it was a treat to share some slowed down time with my older daughter, and her husband. I enjoyed the heart to heart talks that don’t usually happen in the haste of the holidays. Allison and I closed out the old year and rang in the new, fading in and out of conversation, between the nurse’s visits and naps. I woke up at 5 minutes till midnight, looked over and saw her sleeping peacefully. I counted down to the ball drop and counted up the blessings of the last few days, then fell back to sleep.

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Here’s to a very Happy and Healthy 2020 to you all!

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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dance, family, joy, Uncategorized

Are We Having Fun Yet?

“When you get the chance to sit it out or dance, I hope you dance.” – Mark Sanders & Tia Sellers 

Allison gets her work ethic from her dad.  She’s seen him leave home before daylight, and come home after sunset all her life.  His dad did the same.  I admire their “sticktoitiveness”.  But there are times when the job is thankless, when no one is applauding.    That’s when the Mom in Me pleads with them, in order not to burn out, we have to have a balance.  When our world feels more like an endless ride on a roller coaster, after eating a footlong chile dog, we have to stop and get our footing.

Recently, I attended the WOW festival in Cookeville, and enjoyed seeing Allison dance again.

Allison Dance

I love my daughter.  I’m proud of all she’s accomplished, but I’m happiest for her when she’s happy.  I hope she continues to dance, physically and spiritually.

Sing your song picture

I hope she’ll always take the time to locate her joy.  And I hope I can talk her dad into a waltz or two.  😉

Daddy Daughter Dance

Until Next Time,

Know The Hope!

Tammy

 

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autism, faith, family, Morgan

Keeping Life Meaningful

Atrophy – A wasting away, a gradual decline in effectiveness or vigor due to underuse or neglect.

Every now and then, I need to revisit WHY we do all we do.  It’s not about being busy.  It’s about staying engaged in community, giving and receiving joy.  It’s about living our lives with purpose.  Just as a muscle will atrophy from lack of exercise, a person’s spark for life will decline and waste away if meaning cannot be found.  There is a human need to be recognized and relevant.  The more I include Morgan, the more Light I see in her.

morgan-mom-program

Since Morgan exited school last May, my biggest concern has been how to keep life meaningful for her.  Knowing that college, marriage, and the other norms of life are not in her future (short of a miracle), I continually pray to be able to provide things that bring quality and enrichment.  Having a schedule is imperative to keep down her anxiety, but having “Too Much Schedule” can be equally stressful.  We’ve been on and off the treadmill of activities, and we’re learning, it’s all about striking a healthy balance.

Once upon a time, in the Hundred Acre Wood, when asked whether it was time to WORK or PLAY, Winnie the Pooh replied, “YES!”.  Following the wisdom of Winnie, we do a little of both, and Morgan has no problem letting me know when she’s “Busy Relaxing”. 😉

job-small    raptors-bowlingbusy-relaxing

 

 

 

 

 

 

 

Now Morgan works a couple of hours each week at a local sandwich shop, and has her list of chores at home.  She volunteers once a week, helping her Papaw with Meals on Wheels, and her Sunday school teacher put lesson plans together.  She enjoys piano lessons, special needs sports, social activities, and Sunday school.  Together, we enjoy music, art, and baking on occasion.  Recently, we’ve both become part of an Adult Friends Choir at church that performs for assisted living centers in our community. And we have one day a week that NOTHING is planned, except “Staying Right Here” at home.  Image result for winnie the pooh quotes

Until Next Time,

Know The Hope!

Tammy Vice

 

 

 

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autism, faith, family, Morgan, Uncategorized

Come Passion!

I was searching for a word, or phrase, for what happens to us when we can’t face a trauma that has occurred.  Whether it’s an injury, or an event, like the tragic situations we’ve seen in the news recently, or a chronic life circumstance.   In my search, I found the words “numb” and “disconnected”.  They hit home.  Healthguide.org

It’s been a particularly tough week in the world, shouldered on a summer of some major personal changes.  Morgan and I are facing more than a few “last times” as she grows older.  We are prayerfully continuing our search for “what’s next” in this new season.

Yesterday, after the storms, Morgan said “I want to see more rainbows.”  I smiled and said, “Me too, Morgan.  Me too!”  She had put into words what I’d been feeling lately, or rather, NOT feeling.  When we are in the middle of that gray numbness, there may be a disconnection from pain, but there is also a disconnect from passion and joy.  A good reminder to mom that it’s time to plug in again, and do a little rainbow hunting.

Mailbox Flowers

I pointed to our mailbox, where we had planted a spring mix on another gray day.  A couple of weeks ago, they still looked like weeds.  Now they are showing off a few sweet hues of promise.   Sometimes it is so hard to find rainbows on dreary days.  But if we don’t give in to the gray, if we keep searching, rainbows are waiting in new places, to be seen and enjoyed.

Until Next Time,

Know The Hope!

Tammy Vice

Foot note: Click on the link to Healthguide.org for some tips to chase away the gray.

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Dancing Down Life’s Aisle

In the past six months I’ve lost a little over forty pounds.  Some of you have asked if I’m ok.  The answer is Yes!  I’m feeling much healthier and very grateful.  All it took was prayer and a little elbow grease. 😉  Here’s the story:

Romans 12:1 “…Make a decisive dedication of your bodies as a living sacrifice, holy and well pleasing to God, which is your reasonable service and spiritual worship.”

The pages on the calendar continue to flip and fly with life’s events. Morgan will be walking (or dancing) down the graduation aisle with her senior class buddies next June.  She will turn 20 in November, but autism continues to keep her my “forever child”.  Allison will complete her Masters in May and walk down the wedding aisle next September.  All of that to say, I am a VERY blessed and busy mom.

 Although our body is supposed to be a temple, mine was feeling a bit more like a rundown duplex.  😉 After several failed attempts to lose weight and get back in shape on my own, I sent up a sincere prayer for help.  I wanted to be present again to enjoy my family.  As a caregiver, I knew I’d have to go about things a little differently.  Trips to a gym and extended special needs childcare were not within my budget or time constraints.  

Allison said “If you want to lose weight, there’s an app for that!”  I began using “Lose It”, a free app that helped me easily keep track of calories and exercise.   Treadmills are just boring, so I purchased a “Zumba” exercise DVD to get me motivated and moving. Morgan has started joining me to exercise.  She wears her hula shirt and does her own thing while I attempt to teach my body new ways to bend. Picture it in your mind and chuckle, because I will not be providing that photo here. 😉  It’s been fun!  And we are both enjoying better health.  By far, my biggest and best tool has been prayer.  Today I pray for your good health, happiness, and all the healing that love and laughter brings.

Image   Then – December 2012 Allison, Mom, and Morgan

Image        Image        Now – September 2013  

Graduation Aisle                                       Wedding Aisle    

Until Next Time, 

Know The Hope,

Tammy Vice                                                                     

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