autism, caregivers, communication, family, Morgan, peace, Uncategorized

My Take, God’s Take, Outtakes

“And I set my heart to know wisdom and to know madness and folly. I perceived that this also is grasping for the wind.” Solomon  Eccl. 1:17 NKJV
You would think, by this point in my life, I would have learned everything God could possibly have to teach me. However, I am now assured He will forever be tweaking things.

I ended last year and started this one with a very strong sense that God is telling me to SLOW DOWN.  Maybe it’s because my multitasking tools are not what they used to be. 😉 Since applying this lesson, I’m enjoying meals more, realizing I ate.  I’m enjoying conversations more, taking in what others are saying.  I’m not as afraid of missing out on things.  I’m just praying God has me where He wants me. It’s giving me the peace I need to make this stretch of the race.
I do need to throw in a disclaimer to anyone who thinks I may have it more together than I do.  I DON’T.  God DOES.  And He has an excellent sense of humor.  Just when I think I am acing things there is sure to be a twinge or a goose in the ribs coming.
For example: A few weeks back, I was rhythmically going through my morning.  I was so proud (first mistake) of how well I was doing, getting things done, now that I had “mastered” this art of completing “one thing at a time”.  Not slowly, BUT SUDDENLY, I heard a loud hissing sound from the bathroom.  I opened the sink cabinet doors to reveal a fountain of water spraying in multiple directions.  I had THREE thoughts, All. At. Once. OH CRAP! SHUT OFF VALVE! CALL DAD!!! The rest is a wet blur, except to say I learned there will be times when we and our smart selves are just not enough to handle everything that needs to be handled.

Papaw under the sink

Kudos to Papaw and his skills!

A God wink, Morgan emerged from her bedroom as I was mopping up, announced that things were a mess, then landed comfortably in her recliner to wait for me to get my act together. 😉

Need is one of the best teachers of humility.  Forever learning.
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”. 😊

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.

Patient3
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.

PAtient4

 

 

 

 

 

 

 

 

 

 

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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autism, caregivers, faith, peace, Uncategorized

Melting the Iceberg of Isolation

“… I will never leave you or forsake you.”  Deuteronomy 31:8, Joshua 1:5, Hebrews 13:5, Deuteronomy 31:6

When children with disabilities become young adults with disabilities, there is a service cliff.  Families have to piece and patch together everything to keep young adults active in the community.  One of my biggest fears when Morgan left high school, was her falling off of everyone’s map, being forgotten.  Thankfully we live in an area where the disability community itself is very active.  There are always opportunities to socialize in organized activities.   You might say there’s plenty of water to bring the horse to, but my horse doesn’t always want to drink. 😉

Morgan’s autism brings with it a lot of social anxiety.  While she is very comfortable at home, where she is able to communicate her needs, hang out in her jammies and play on her iPad Way Too Much, that only adds to the iceberg of isolation.  It’s up to me to get her out the door and into social activities.  She does “want to see friends”.  She just doesn’t always know how to “be with friends”.  As much as I try to nudge her into the group, if she’s not able to relax and engage, it’s not going to happen.  This not only isolates her.  It isolates me.

2019-10-22 (2)

All caregivers deal with isolation to some extent.  It just goes with the territory.  Add to that caring for someone who, due to their disability, is unable to give you that pat on the back for giving it your all.  It can be extremely draining at times.  It can make you question if you’re doing it good enough, if it’s possible to do anything good enough.

Recently, I was speaking to another caregiver who was feeling very unappreciated, very alone in their circumstances.  The advice I heard come out of my mouth was, “Do everything you do, as unto the Lord.” Col 3:23.  Until that moment, in my own exhaustion, I realized I had forgotten my own advice.

I have to remind myself, as I keep reaching out for Morgan’s sake and mine, I also have to Keep Reaching Up, to keep from giving up.  I don’t even know how to explain it, but there is a very solid peace I find, knowing that God has promised to never leave me or forsake me. I don’t have to fear for Morgan, or myself, being forgotten. God still sees us, even when no one else is looking.

Until Next Time,

Know The Hope!

Tammy

 

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caregivers, faith, family, joy, Love, Uncategorized

Nothing Up Her Sleeve

“And we have come to know and to believe the love that God has for us. God is love, and the one who remains in love remains in God, and God remains in him.” 1 John 4:16

When I was young, some of my favorite memories were spending time at my grandma’s house.  There was nothing extraordinary about the visits.  Every day was pretty much the same. She was either cooking, washing, cleaning, chasing my cousins and me, tending to my aunt Laura Mae, or ironing clothes for “customers”.

Grandma Edmonds was a “One Woman Show”.  She kept one of those big old family bibles open on her kitchen table.  I’d see her sit down from time to time to sift through it quietly.  Come to think of it, that was the only time I remember seeing her pause from her labor.  Day in and day out, that was her life.  Even with all the busyness, there was a peace in her house.  I loved thumbing through the pages of that old bible, looking at all the pictures, hearing her whistle old hymns from the kitchen, while she baked.   I felt safe.  I felt loved.  The song below was written about those memories.

Grandma Edmonds’ Daily Bread

    Grandma Edmonds' BibleFamily Bible 1 John 4

Pictured above – Grandma Edmonds’ Family Bible

Before all of us grandkids came along, Grandma Edmonds had raised my mom, and four other children, on her own.  Her daughter, Laura Mae, had physical and intellectual disabilities, due to spinal meningitis.  It was clear to see that caring for Laura Mae was a labor of love for my grandma.  I remember her speaking softly and sweetly to her, while she fed her.  She’d tell her how pretty she was when she combed her hair.  She’d gently rub her arms and legs to relax her muscles.  Laura Mae was safe.  Laura Mae was loved.

“There is no fear in love; instead, perfect love drives out fear, … We love God because He first loved us.”    1 John 4:18,19

Laura Mae ChairLaura Mae and Mamaw

My Aunt Laura Mae

Laura Mae Bed

From my grandma, I learned the value of every life.  I learned that I can do whatever I need to do, with joy.  I understand that nothing is accomplished by wishing, but prayer and little elbow grease can bring about some amazing outcomes.  There are no fairies, but there are plenty of angels among us.  The stories in that old bible are not fairytales.  They are practical, factual, powerful words of life.  There was no magic up my grandma’s sleeve.  Although, Love IS a miracle.

Until Next Time,

Know The Hope!

Tammy

 

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autism, caregivers, Morgan, Uncategorized

Social Graces and Hidden Disabilities

“Parents don’t make mistakes because they don’t care, but because they care so deeply.” – Berry Brazelton

As a parent of a young woman on the autism spectrum, I’m realizing there’s a fine line between accommodating and crippling Morgan. I am forever tripping over that line. The Judgers only trip me more. The Getters keep me trying.

You see, there are two Morgans.  The one I see at home is confident and assured, able to express her wants and needs most of the time, able to create, and even crack a dry joke.

Then there is the Morgan out in public.  The one that tears at my heart, because she’s so anxious about “Too Many Friends”, uncomfortable places, not enough schedule, too much schedule,… She has two reactions to the stress of public gatherings.  One is to loudly announce her discontent to everyone, and the other is to completely shut down.

A while back, Morgan participated in an exhibition basketball game.  Things were just a little noisy and chaotic.  She squeezed her eyes shut, and lowered her head to disappear.  I watched from a distance as peers passed her by, moving on to others who met them with smiles.  Morgan’s self isolation continues to cost her so many opportunities.  Whenever this happens, everything in me wants to jump in and rescue her (and I have on several occasions), but I realize there’s going to be a time when I’m no longer able to be that link of understanding between her and the world.  In order to make it out there, she will have to somehow find it within herself to reach back to those who reach out to her.  Daily prayers go up for her social graces, and others’ understanding.

Thankfully, we had a successful event recently, which gave me a little renewed hope.  Morgan was asked to pass out programs for a community gathering with Borderless Arts Tennessee.  She was given an active roll, and rose to the occasion.  She also sat along side friends to do a little creative activity.  Later, when she announced she was “Tired and All Done”, friends gave a knowing smile.  Morgan was asked to help present a couple of awards, and continued to hang with a little encouragement.  She even managed a smile for the camera, in the middle of her protests. 😉

I. Just. LOVE. the Getters, those who truly understand, and I’m most thankful for the Knowers, like Dr. Temple Grandin, Emelyne Bingham, and other amazing women on the spectrum for reminding me to continue to challenge Morgan.

In my parenting experience, I’ve had many proud moments, and some very humbling ones. When our children are flying high, we can be tempted to pat ourselves on the back, thinking we’ve got it all together.  In those times of pride, shame on me if I’m ever a Judger of another parent, who’s loving their child the best way they know how.  “But for the grace…”

Until Next Time,

Know The Hope!

Tammy

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autism, caregivers, faith, family, Morgan, Uncategorized

Pinning Down the Practice of Living Unrehearsed

“Hope for the best.  Expect the worst.  Life is a play.  We’re unrehearsed.” – Mel Brooks

While looking through old jewelry to find Morgan some hat pins, I came across this.  It’s my old Girl Scouts pin.

Girl Scout Pin

“Always Be Prepared”.  I took that motto seriously.  To this day, I am forever over planning, over thinking, and running over everything that threatens to get in the way of my plans.  But no matter how I attempt to cover all the bases, life with autism continues to throw me curves.  As much as I’d love to see Morgan’s ducks line up my way, she has a production of her own in mind.  In God’s sovereignty and sense of humor, I believe He has enlisted Morgan’s assistance to keep me on my heels, and my knees. 😉 I am slowly beginning to realize He does His best work when I’m off balance, and unable to be “too much” help.

So how do I do this?  How do I find His balance for me, that red line, of where my responsibility ends, and trusting begins?  Life is a LIVE performance.  We don’t get an encore, so I desperately want to get it right.  As the parent of a forever child, the struggle is REAL.  My older daughter, Allison, texted me this photo yesterday of some wall art she purchased for her living room.  God’s timing, a good reminder of where to begin again.
Be Still and Know

 

 

 

 

 

 

Contrary to my nature, I am making a conscious effort to once again be still.  I will halt my mind’s endless rehearsal of all of life’s possible outcomes.   Instead, I will sit quietly, earnestly turning my focus back to The Director, on Whom my hope relies.

PS – I had to smile when I saw this other tiny treasure.  It’s a skating pin I received for winning a race at Hall’s Skating Rink, more than half a century ago.  Even then, slowing down was not my specialty.  😉 Always learning.

Skating Pin

Until Next Time,

Be Still and Know The Hope!

Tammy

 

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