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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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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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

 

 

 

 

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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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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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Uncategorized

Ask Me To Dance

“Diversity is being asked to the party.  Inclusion is being asked to dance.” – Verna Myers 

When Allison and Morgan were babies, I spent a grand amount of time doing everything a mom does for her children.  I suspected the natural progression would be less in my hands, and more in theirs, as time passed.

As Allison grew, and became able to do things on her own, I’d step back and happily step in, whenever needed.  Being my first, it was much easier to hang on, than to let go.  School came.  Friendships came.  Invites and outings came.  Opinions, independence, and marriage came.  There are still times when she needs to talk to mom, to share about her day;  the good, the bad, and the ugly.  And of course, I Love that.  🙂 She’ll ask for advice, weigh what I say, and then make her own decisions.   I’ve never had to be concerned about her finding her place in the world.  She knows how to reach out, and reach back.  She knows how to ask for what she needs.

allison-jabe-wed-1159

Morgan is on the autism spectrum.  Her walk has been anything but a natural progression.  I’m still stepping back, stepping in, side stepping,… whatever it takes to help her be a part of things.  She has come a long way.  Like her sister, she has definite opinions.  😉 But in life’s dance, she still needs a partner.  She needs someone to Ask her to dance and support her steps.  As easy as it is to do things FOR her, there is so much more value in doing things WITH her.  It takes more time.  It takes more patience.  When she nails the steps, the dance is beautiful, and uniquely her own.  The girl has MOVES. 🙂

Night To Shine Dance 2018

 

 

 

 

 

 

 

 

I’m so grateful for the things I’ve learned from doing the mom dance with both of my daughters.  “INCLUSION is Being Asked to Dance.”  The past few years, I’ve had the privilege of working WITH The Weekley Hall Singers.  They are a group of adults with disabilities who enjoy encouraging others with their music.  They were ready to be Included.  They were ready to be Involved.  All I had to do was Ask.

Weekley Hall Singers Foyer 1

Weekley Hall Singers Foyer 4

The Weekley Hall Singers are Engaged. They are Enthusiastic. They give it all they’ve got. They make My heart dance.

Until Next Time,

Know The Hope!

Tammy

 

 

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dance, family, joy, Uncategorized

Are We Having Fun Yet?

“When you get the chance to sit it out or dance, I hope you dance.” – Mark Sanders & Tia Sellers 

Allison gets her work ethic from her dad.  She’s seen him leave home before daylight, and come home after sunset all her life.  His dad did the same.  I admire their “sticktoitiveness”.  But there are times when the job is thankless, when no one is applauding.    That’s when the Mom in Me pleads with them, in order not to burn out, we have to have a balance.  When our world feels more like an endless ride on a roller coaster, after eating a footlong chile dog, we have to stop and get our footing.

Recently, I attended the WOW festival in Cookeville, and enjoyed seeing Allison dance again.

Allison Dance

I love my daughter.  I’m proud of all she’s accomplished, but I’m happiest for her when she’s happy.  I hope she continues to dance, physically and spiritually.

Sing your song picture

I hope she’ll always take the time to locate her joy.  And I hope I can talk her dad into a waltz or two.  😉

Daddy Daughter Dance

Until Next Time,

Know The Hope!

Tammy

 

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