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”. 😊

Hospital gown 2
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, 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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communication, Love, Uncategorized

What Did You Say?

“Most people do not listen with the intent to understand. They listen with the intent to reply.” Stephen Covey

Recently I attended a women’s retreat in Alabama. The highlight for me was a conversation that happened because one of the speakers, Tammy Tkach, challenged us to listen to others without interrupting.  She said let someone else tell you their story, and even though you may be tempted to interject yours, don’t.  Just listen.

During a break, I looked across the table, and there sat Marguerite.  I asked where she was from.  She said, Baton Rouge.  I nodded, kept my mouth shut, and continued to listen.  She grew up south of Baton Rouge.  She met her husband, while in college there, and moved to the area.  I smiled, leaned in, and kept listening.  She had taught middle school for 30 plus years, and is now retired.

“When you talk, you are only repeating what you already know.  But if you listen, you may learn something new.” Dalai Lama 

Next came the gem of her story.  She told me other teachers would always ask her why her students were so well behaved, why they followed her directions, and stayed in line.  She said it was simple.  When someone was misbehaving, she didn’t yell at them across the room.  She motioned them to come to her.  She would have a private conversation with them, asking them to tell her what they were doing wrong.  She asked them why they were doing it, to help them think about what they had done.  Then she would say,  “Now are you going to do that again?”  This gave them the opportunity to make their own decision and be responsible for their actions.  As she shared, I could hear the love and respect she had for each child, the lesson of respecting others she was passing on to them.

“One of the most sincere forms of respect is actually listening to what another has to say.” Bryant H. McGill

Thank you Tammy, for the challenge.  Thank you Marguerite, for your story.  A great lesson for this mom who is always learning.

Until Next Time,

Know The Hope!

Tammy

 

 

 

 

 

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autism, family, holidays, joy, leap of faith, Love, Morgan, risks and rewards, Uncategorized

Family Gatherings

“I am brave. I am bruised.  I am who I’m meant to be.  This is me.” – Lettie Lutz in The Greatest Showman

Reconnecting with family can be very joyful; going over old memories, catching up on hugs, sharing what’s new,…  but for Morgan, it can also bring a lot of anxiety.  A couple of the hallmarks of autism are the difficulties with social interaction and communication.  This is partly due to the inability to understand other people’s thoughts and feelings.

Not saying family is scary, but whenever any large group of relatives come together, there are numerous opportunities for things to go awry for the best of us.  For Morgan, “too many friends” for “too long”, with no understanding of when the shindig is going to wrap up,  can make her “all done” much earlier than the rest of us.  For this reason, in the early years, I became more and more weary of family gatherings.  Little by little, I backed off, encouraging everyone else to carry on without Morgan and Mom.

Now Morgan is 25.  Her cousins are grown and married, with kids of their own.  We’ve missed a lot of years.  Since her dad and his sisters all have summer birthdays, we decided to gather to celebrate.  This time, to relieve my anxiety, we called ahead with a game plan.  We had the conversation with family, letting them know that Morgan may have to come for a short time, and then take a break.  And It wouldn’t be because anyone did anything wrong.  It would just be the best way for everyone to have a good time.

   Peggy Jackie and Rudy.JPG Rudy and his sisters

Morgan meeting her new cousin, who lives in Canada now

We booked a hotel nearby, where Morgan and I could retreat when needed.  We really enjoyed seeing family again.  When she was “all done”, we left dad to relax and continue catching up with everyone.  We went for a swim, took walks, rides, and naps, and came back ready to visit some more.  She told me twice that weekend, “I doing a good job.  I’m trying to be brave.” 🙂 She did do well.  I’m thankful for how far she’s come.  I’m thankful for learning to drop the veil, and be brave enough to have the conversation, so we can just be ourselves.  It turned out to be a very enjoyable visit.

 

Until Next Time,

Know The Hope!

Tammy Vice and Family

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autism, faith, family, Morgan, Uncategorized

Chains and Rainbows

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.” 1 Corinthians 13:12

Each year, our family holds an autism benefit for Autism Tennessee at the Bluebird Café.  This April will be our sixteenth year.  The event was named “Breaking The Chains”, after a song that was written for our daughter, during a time I had so many questions about her and her future.

You know that old saying, “Be careful what you pray for.”  I remember a time when Morgan seemed to have no interests in anything we presented, and we had tried everything.  She was diagnosed with autism when she was 3 1/2 years old.  Below are the lyrics to the song, a prayer, to be able to connect with her.  One of the lines is “open your eyes to the colors of rainbows”.

Help Me Break Those Chains

 How can I reach you so that I can teach you

Open up the world and put it in your hands

Cast out those shadows, replace them with meadows

How can I help you finally understand

There is a place out, I need to show you, please don’t hide

 

Help me break those chains that hold your precious mind

Like Rapunzel in her castle, please let down your golden hair

I need to climb and join you so that I can find

That something that’s missing between here and there

Help me break those chains

 

Open your eyes to the colors of rainbows

Open up your ears to hear the whippoorwills

Come out of that midnight, reach into the sunlight

Feel the warmth that greets you as your climb those hills

Taste the sweetness of each day, together we will find a way

 

Help me break those chains that hold your precious mind

Like Rapunzel in her castle, please let down your golden hair

I need to climb and join you so that I can find

That something that’s missing between here and there

Help me break those chains

Tammy Vice J Rees Music BMI (c)

Now Morgan is 23.  Education through the Arts has played a major role in opening the doors of communication.  I call her my event planner.  She is always about the Next Big Thing, and our house looks a lot like an art gallery.  She assigns each month a color and theme.  March was green, and “rainbow kites”.  We paint a scene on our sliding glass door to ring in the new month.

The rainbow is a promise.  There are still countless things I don’t know, so I’m thankful I do know  The Rainbow Maker.  🙂

Until Next Time,

Know the Hope!

Tammy

 

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Uncategorized

“See What I Mean?”

It’s called developmental delay for a reason… 

“Sometimes a flower blossoms out of season.” – from the song “Blue Rose”

Our Blue Rose will turn twenty this month!  As we celebrate how far she’s come, I also celebrate how much she’s helped me grow over the years.  We are both forever learning what it takes to communicate and understand each other, and the world around us.

 

It has taken Morgan, and autism, a long time to teach me that communication is SO MUCH MORE than words.  It can be heard in a melody, seen in a piece of art, smelled when we’re baking, tasted in a treat, and felt through her gentle “head bumps” and hugs. 

When I’m working with Morgan, I’ve learned to employ all the senses in order to make the project more meaningful to her.  She and I recently co-wrote a song for our upcoming visit to the beach, where they hold a songwriters festival this time of year.  Morgan has a unique way of phrasing things, and I love her lyric.  Below you can listen to the song, and see some of the work we did to bring it together.  Hope you enjoy!

Click HERE to listen to a preview of “A Best Day at The Beach”.

       “Diamond Tail Kite” Drawing                                                 “A Best Day at The Beach” Drawing

 

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             Practicing Our Song                                                                        Morgan’s Lyric

 

 

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Until Next Time,

 

Know The Hope!   

 

Tammy Vice

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