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.

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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.

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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, 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

 

 

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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.

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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.  🙂

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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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