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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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.  🙂

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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, 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, Morgan, risks and rewards, Uncategorized

Life Is a Stage

“Joy is what happens to us when we allow ourselves to recognize how good things really are.” –  Marianne Williamson

Recently, Morgan had the opportunity to perform at Nashville Children’s Theatre.  The evening was a series of one act plays and monologues, entitled “Conversations Over Tea”, put on by Borderless Arts Tennessee and Nashville Children’s Theatre actors.  It included friends with and without disabilities.  There were some excellent performances, and we were excited for her to be a part of it.

Morgan’s autism and anxiety can make her want to avoid “too many friends” and new situations.  It can often steal her joy, making it a struggle for her to hang for group activities, where she’s not sure what “the script” is.  I’ve heard “practice makes progress” so we are always seeking new challenges, and saying yes to new things, to help her stretch her ability to cope.  In order to help her be successful this time, we took an early trip to NCT to give her a preview of what was in store.

While I always hope Morgan will be able to give her best onstage performance, I’m much more invested in her performance off stage, Because That’s Where Life Happens.

The night of the performance, she was able to wait, listen to others, and clap for them.  She sat for over an hour before it was her turn.  I know it was hard.  I even heard her say to herself a couple of times, “I can do it.  I can do it.”,  meaning she could hang in there. And she did!  So proud of my girl. 🙂

Here’s a link to her performance at NCT – Brown Truck

Here’s a link to another performance at the Bluebird Cafe’, an autism awareness event she’s been a part of for several years – Circus Song and Brown Truck

You can see the difference in her level of ease, when she’s in a familiar setting.  I’ve seen her light up when she lets go of the anxiety, and enjoys the moment.  That’s what we’re aiming for.  On and off stage, we want Joy to be center stage.

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, faith, family, Uncategorized

I’m Gonna Tell It All

“Blessings sometimes show up in unrecognizable disguises.” – Janette Oak

This month’s blog comes from a dear friend, Darlene Blade.  I’ve had the privilege of sharing the stage with her son, Logan, and seeing first hand some of the lives he’s touched.  I’ve asked her to share their family’s story:

I had heard of miracles, and even witnessed some, growing up in a Pentecostal Church.  Did not know then that I would be right in the middle of one in my married life.  Well God sent me a great man to share this life with, and at the age of 16 we started our life together.  God had a plan all the time for us.  We just celebrated 43 years of marriage.  When we were on our 16th year, we talked about having a child.  See, we were so young and had a lot of growing up to do ourselves.

Darlene and Terry 2018

After two devastating miscarriages, God gave us a beautiful 8 lbs. 2 oz. baby boy.  His name would be Logan.  We were elated to say the least.  Just what we had always wanted.  I asked God for only one healthy child and I would never ask him for another.  Oh what a joy he was!  Like any child, Logan began to babble and say Mama, Dada, yes, no,…  learned to play Itsy Bitsy Spider, and do all the things babies do before he was two years old.
When he turned two, it was like someone had flipped a switch.  He lost all of his words, and stopped making eye contact.  It was like he was a stranger, and not with us anymore. After many doctor visits and therapy sessions, Logan was diagnosed with autism.  What we thought was a curse back then has turned out to be one of God’s greatest blessings.
You see, Logan hums for self stimulation.  A very special teacher named Kim Sutton found the gift that God had blessed him with.  Logan is a music savant.  He was humming in perfect pitch.  He could pick out songs on the piano, read music, and even do music notation.  And the biggest miracle to us,… He Could Sing.  Yes, he had no verbal language, but God had put a song in his heart, and it had to come out.

Logan in the Studio
Logan has been blessed to sing with Josh Turner on the Grand ole Opry, and sing with The Nashville Symphony .
Logan has just finished his 4th CD, “I’m Gonna Tell it All”, title song written by Tammy Vice and Jerry Salley.
We travel, and share God’s blessings, all over the southern states.  So in closing, I would like to say, all things in your life that you may think are a curse, might just turn out to be a special blessing of your own.

Darlene Blade
Logan’s Mom
Autism is a way of life for us.

Visit Logan Blade’s Facebook page, and watch for his upcoming CD!

Until Next Time,

Know The Hope!

Tammy Vice

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