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.

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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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autism, caregivers, faith, family, Morgan, Uncategorized

Real-ity Estate

“You are the light of the world.  A city situated on a hill cannot be hidden.” Matthew 5:14

This June will mark two years of Morgan and mom being full time buddies.  That’s when Morgan’s schedule became our schedule.  For the most part, we’ve adapted well.  There has been lots of unexpected joy.  I never know what that girl’s going to get me into.  😉 But truthfully, I’ve had my struggles.  There was that moment of realization in this new normal, when I finally conceded, that my personal wants and needs would have to be placed on the back of life’s shelf indefinitely.  It was, and still is, quite humbling.  I remind myself often that God doesn’t waste anything, or anyone.   He can use us in whatever situation we are in, if we make ourselves available.

I’m not just Morgan’s mom.  I’m Allison’s mom.  I’m a wife, a daughter, a sister, a neighbor, a friend, a community member,…  More importantly, I’m God’s child.  I do have a little plot of influence.  I believe I am still able to do whatever He calls me to.  It’s not a lot of acreage, but it’s my little piece of the planet.  I want to stake out the property lines wisely.  I want to take the best care of what He’s deeded to me.

Rocky Rose

I have been so blessed, that frankly, when He’s done with me here, I’m more than ready to go home.  In the meantime, I’m thankful for every opportunity, every “hill”, He gives me and Morgan.  I want us to be an encouragement to others who might feel forgotten on the back of life’s shelf.  If that’s you, I want you to know God sees you there.  Every morning Morgan and I say a prayer together, to be a light that leads others to Him, and his perfect love.  Some days we shine a little brighter than others.  He’s still working on our wicks. 😉

Until Next Time,

Know The Hope!

Tammy

PS Please check out The Identity Theft of Caregivers, a teaching moment from Peter Rosenberger.  Also visit Peter’s Radio Show, Hope For The Caregiver

 

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