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

Standard
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

Standard
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

 

 

Standard
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.  🙂

OLYMPUS DIGITAL CAMERA

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

 

 

 

 

Standard
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

Standard
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

Standard
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

Standard