Sometimes what we think will be our greatest trials turn out to be our biggest blessings. “I asked God for patience and flexibility. He gave me Allison and Morgan.” thoughts, thanks, family, & autism
“With just the right attitude, we have the ability to change the wrong perception towards those with disabilities.” – Robert M. Hensel
April is Autism Awareness/Acceptance month. As Morgan would say, “Here We Go Again!” We began holding the Breaking The Chains Benefit at The Bluebird Cafe’ in 2001 for Autism Tennessee. This April was the 21st annual show.
There have been so many places our family has not fit in, over the years. So many gatherings we just didn’t, and still don’t, know how to blend in and play a meaningful part. A lot of it has to do with how others perceive us. Morgan knows when somebody perceives her as able and it puts her more at ease to be all she can be. We’re grateful that the Bluebird and their staff took the time to get to know us. We’re thankful they continue to welcome our family each year. Morgan feels right at home now, and that makes us feel at home. 💙
The Ribbon Cutting to open the show
Morgan loves their “yellow chicken and fries”. I always go over the schedule with her before we start. Knowing what to expect makes everything go smoother. From the ribbon cutting to the closing of our segment, she’s onboard. She knows to “lower her volume” while friends are singing, and wait for her turn. Waiting well can be the hardest part. She nailed it. 🙂 And when it IS her turn, she shines. She knows what she’s doing matters.
This year, we brought along some kazoos so our friends could join us on a song Morgan and I co-wrote called Blueberry Jam. They Nailed It! Above is a link to the video. We hope you enjoy. Feel free to join in.
There are some great writers and artists who bring a variety of talent to the early and late show each year. Our family enjoys being a meaningful part of it all.
“In Life, it’s not where you go, it’s who you travel with.” – Charles M. Schultz
Driving around town with Morgan can be entertaining and intense. Although she does not have a drivers license, she’s a bonafide, certified backseat driver. She offers endless commentary to keep me aware of our surroundings. She’ll say “Look out for cones. Look out for cars. Be careful, Don’t Break Morgan’s car,… S T O P spells stop.“ When I’m distracted, from all of her help, and miss a turn. She’ll say “Uh Oh! Better try again!”
S T O P Spell Stop!
Morgan questions our schedule and how many stops we need to make, then she recites it back to me, to make sure nothing’s changing. If she repeats it too many times, I give her a side eye, letting her know I need some quiet time to focus. She’ll giggle and say “Take a Deep Breath”, which is what I tell her when she gets anxious. We take a few breaths together and keep on rolling.
I do love being on the road with Morgan seated by my side. There’s something about the hum and motion of the car that gives the scenery and me her full attention. We discuss the sights, sounds and smells; the blue sky, a hawk flying, a distant siren. Some smells are nice, like fresh cut grass. Some are not so pleasant. When we catch the scent of a skunk, she’ll groan, wrinkle up her nose, and say “Oh, My Nose Burns! A Bunch a Skunk!” Whenever she spots roadkill, “Oh dear, He died. He’s a Goner.”
At every intersection, Morgan announces her disappointment with red lights. “Oh no. Where’s the green light?” Then she reminds herself out loud, “Let’s be patient. We are taking turns… Come On Light!”
Let’s Get This Show On The Road!
Sharing the road, And Sharing Life with others can take lots of patience. Whether we are riding or walking, Morgan is always telling me to “Watch your stepping”. It’s her way of saying take your time and be careful. We wrote a little song to help us be patient with others and others be patient with us. The lyrics are below:
WATCH YOUR STEPPING by Morgan & Mom
We need to S T O P. We need to L O O K
It’s best to L I S T E N to what’s coming both ways
Watch your stepping. Stop, Look and Listen
Watch your stepping. Stop, Look and Listen
Everybody’s in a hurry
Everybody’s got somewhere they need to be
We’ll have a better chance of getting there
If I look out for you and you look out for me
Watch your stepping. Stop, Look and Listen
Watch your stepping. Stop, Look and Listen
We need to S T O P. We need to L O O K
It’s best to L I S T E N for what’s coming both ways
“ Joy does not simply happen to us. We have to choose joy and keep choosing it everyday.” – Henri Nouwen
We’ve been working with Morgan for a very long time to help her understand when we ask her to choose something she wants, there’s no wrong answer. This is not homework. It’s not a test. It’s not about giving us the answer she thinks we want. It’s about letting us know what she prefers. She’s always had a lot of anxiety when making choices, because we just couldn’t get this message across to her.
A few months back, we started working with Morgan to up her independent skills. We gave her more ownership of some household chores, started relying on her a little more to help gather items at the grocery store,… and created a task list to help her make breakfast on her own. She tends to be very routine, eating the same thing for breakfast every weekday morning. But as she got more comfortable with making her own breakfast, some natural choices began to happen. She began to pick different fruits. Soon she added an extra piece of turkey bacon. She told me she was “Hawngry”. 😍 She has always put butter on her toast. The other day, she spread blueberry jam on her bread instead.
Blueberry Jam and Bread – Yum! 😋
We’ve still got a ways to go, but I think she’s finally getting it. Realizing we can make our own choices is a very empowering thing. It’s the difference between settling for the same old same old every day, or deciding we want to have a blueberry jam kind of day. 💙
Revisiting an old post, adding more insight, because it holds even more true for me today.
Me and My Girls
I’ve often jokingly referred to my autistic traits as Momtism, because I believe I’ve inherited some of them from walking daily in my daughters’ footsteps. However, the more understanding I gain, the more I believe I truly am on the spectrum. I guess it’s neither here nor there, but it explains a lot to me;
The awkwardness I often feel in conversations, small talk
The missed cues, miscommunication, feeling left out of the loop
My NEED to have a plan, or at least a solid idea of what’s expected of me in new situations
Sensitivity to surround sound, perfumes, clothing, …
The list goes on
I do Not like surprises. I’m definitely guilty of overthinking and over planning things. But it helps me check all the boxes and get things done. 😂
Sometimes it’s like I’m on the outside observing life, but not really a part of things
I communicate best in writing and songwriting, because it gives me time to process my thoughts. The music helps me access and express emotions when the words alone fall short.
Below is the post from a few years back. Click on the link below to view the previous blog.
I know I’m quirky, but I’m thankful for how God put me together and I’m grateful for everything He has allowed in my life. I’m grateful for all the joy AND the trials. I believe there is nothing that better equips us to walk with compassion and empathy, than treading through our own quicksand of circumstances. It gives us a heart for others who are stuck in similar sand.
The bottom line is, with God’s constant guidance, I know I can become the best version of me.
“If you take away a person’s struggle, you take away their victory. It is like pulling a caterpillar out of its cocoon before its time. It will never become the beautiful butterfly.” Cameron C. Taylor
The hardest thing I’ve ever had to do is stand back and watch Morgan struggle to do something by herself, that I can easily do for her. But I realize, once I’ve provided the tools she needs, there’s nothing more effective than letting her find her own way through the task. Even the mistakes, especially the mistakes, are opportunities for her to learn the correct path to success.
Finding a way to keep Morgan safe, while she’s gaining new independent skills, is the first priority. We’ve connected with AngelSense.com to get her a tracking device that allows us to communicate with each other when she needs help. Along with the device, we are also working with their BCBA team (Board Certified Behavior Analyst) to help us plan ways to widen her world.
Locating her favorite lunch acccessories
Having a way for Morgan and I to keep in touch, is giving us both the courage and confidence we need to let her spread her wings. Above, she is proudly returning from her quest to find her favorite chips on her own.
Morgan’s not only learning to distance in different community settings, she is also taking on more responsibility at home. I often hear her say “I can do it myself” as she is making her own breakfast and lunch. She is helping more with chores, and learning more about self care. While taking walks, we have little conversations about her latest accomplishments and new things she might like to try.
In this life, I realize that Morgan will always require a certain level of support. She will need a little extra grace on the hard days. Me too. Especially when I’m tempted to help too much. Wherever possible, I want to give her all the patience, time, and space she needs to fly. I believe one day she will, Higher Than High. ❤️ 🦋
“Now the large group of those who believed were of one heart and mind, and no one said that any of his possessions was his own, but instead they held everything in common.” Acts 4:32 HCSB
Our family was grateful to be a part of the Frank Brown Festival’s benefit for Autism Pensacola, Inc. again this year. The event began back in 2013. In previous years, it was held at the Sunset Corkroom, a beautiful venue, which closed shortly after last year’s benefit.
With all the changes, we were uncertain if there’d be a place to continue on. But when you have a community of people who are passionate about a cause, things happen. Everyone pulled talents and resources together to create a wonderful new experience, while keeping the heart of the cause in mind.
Thank you Flora – Bama for providing the perfect space and atmosphere. Thank You to all the Staff and Volunteers of the Frank Brown International Songwriters Festival.
To the Auction Committee, the Songwriters, and the Community who came out to support, You ROCK!
To Logan Blade and Morgan Vice for sharing your gifts, spreading autism awareness and acceptance. You’re the reason for our passion.
Morgan and Logan and RoadiesThe Songwriters and SupportersThe Auction Committee
There are countless folks not named or pictured here, but know that every hand that helped mattered. I never cease to be amazed at how God brings all things together when hearts unite for a worthy cause.
“The generous soul will be made rich, And he who waters will also be watered himself.” Proverbs 11:25 NKJV
Morgan loves everything about the circus. For as long as I can remember, she has always had a heart for clowns. She has the grease paint, the rubber nose, and even the T-shirt to prove it. It may have begun with Dumbo, the little elephant who everyone made fun of, but eventually rose above all their lack of expectations.
As a mother who believes for the best, I have always supported Morgan’s dreams, despite her limitations. You just never know until you try. And that brings us to the unicycle.
A few years back, Morgan was quite determined that she needed a unicycle as part of her circus gear. The purchase was made. A sweet friend built her some rails for support. Mom, Dad, and Morgan gave it our all. But eventually the unicycle ended up leaning lonely on a wall in back of our garage.
Unicycle practice, with Dad assisting
Recently, Morgan spotted her dusty unicycle and said “Wanna give it to a clown”. A couple of days later, she brought it up again. I asked her if she was sure. She said “Yes. Morgan needs three wheels.”
It just so happened a circus was coming to our neighborhood. I wondered if we might just find that clown. I looked up the website that was advertising Lewis & Clark Circus. I emailed the box office, telling them our story, sending a picture, letting them know Morgan was on the autism spectrum and how important this was to her. The lady thanked us for sharing our story, and said she’d do her best to connect us.
The family who owns the circus emailed me the same day. The mom said they would love to receive Morgan’s unicycle. She told me they also have a child on the autism spectrum. Coincidence, I don’t think so. ❤️ Dad is the head clown, and he met with Morgan before the show.
Morgan gifting her unicycle to her fellow Clown friend
Here He Is, All dressed up and Ready for The Show
The Circus was Wonderful!! Morgan even managed to Hula Hoop her way to a Lifetime Ticket 🎟️
I was so proud of Morgan for thinking another clown might be able to enjoy her unicycle, instead of letting is collect dust. She was very happy to share it with her new friend. And she’s decided that “three wheels” suit her best. 😍
Two Wheels for Mom, Three for Morgan
As always, God is working in ways we cannot see. Our family is thankful for the gift of a very special friendship.
“Where words fail, music speaks.” – Hans Christian Anderson
As a writer, I love searching for just the right words to sculpt a story that will hopefully give the reader a clear picture. But what I’ve learned from my daughter, who is on the autism spectrum, is that words alone are not always enough to reach the ears of some listeners in a meaningful way.
Morgan and I began writing songs together years ago because I could see the music took the words to a more receptive place in her mind. It’s been a fun way to increase her language skills and for us to connect on a deeper level.
We pick whatever Morgan’s excited about, or not so happy about at the time. She has a unique way of phrasing things and I love capturing her perspective. Many individuals on the autism spectrum are visual learners. This is true for Morgan. So sometimes we’ll also draw pictures to bring out more conversation. I love how the Arts help us involve all the senses to enhance learning.
Recently, we went in the studio together for the first time to capture a live recording of one of our songs. We wrote this one after it had been raining for more than a few days. She was beginning to complain, so I took the opportunity to gather her thoughts. Below is the link to the song and the cover picture, painted by Morgan. ☀️😎
“Then He called a child to Him and had him stand among them. “I assure you,” He said, “unless you are converted and become like children, you will never enter the kingdom of heaven.” Matthew 18:2-3 HCSB
Since Morgan was a baby, she’s been praying before her meals and at bedtime. By the time she was diagnosed with autism at age 3 1/2, those words had lost their meaning. She would only echo back our words or repeat the scripts of her favorite cartoons.
Gradually, over the years those prayers from Morgan’s earliest memories began to come back and have meaning to her again. As she got older, bedtime prayers included a short list of family members that she routinely recited each night. She also began praying thanks over each individual item on her plate, requiring us to answer “You’re welcome” after each thank you.
A prayer for before Saturday backyard breakfast
Review and routine can be a good thing for autism. But sometimes it can just become rote recitation. When Morgan began racing through her prayers every night, slurring the words, it was time to make them meaningful again. We changed the prayer to “Dear Jesus, now I lay me down to sleep. I pray the Lord my soul to keep. Let love stay with me through the night and keep me till the morning light. God bless Morgan, Mom & Dad, our family, our friends, and our enemies.” I told her God also loves people we don’t agree with, so we should pray for them too. 😉🙏
Recently, Morgan has learned to cook her own breakfast All By Herself. But she was still requiring me to answer “You’re welcome” as she prayed over her food. This routine has gone on for several years. OCD (obsessive compulsive disorder) was stopping her from eating until I was there to help her complete the prayer. I thought it was going to take a long time to change this. Thankfully, I was wrong and I’m delighted. ❤️ I explained to Morgan that she had cooked her own food and she just needed to talk to Jesus and thank Him for being able to do that. It worked! Now she says, “Dear Lord, thank you for this food and all your many, many blessings. Amen.” She added the extra “many”. She’ll look at me sometimes and say “Just Jesus and Morgan.” ☺️
I’m so thankful to know how much Jesus loves her, to know when I can’t be there, that He’s always there to answer her prayers. I have no doubt of this, because He was there to answer my prayers when I was 5 years old and there was no adult in the room. He let me know then how much He loved me and that I belonged to Him.
Parenting is always a wonderful journey that comes with unique challenges. But there’s an added layer of difficulty when you have a child with physical or intellectual disabilities. Navigating through doctor’s appointments, therapy sessions, and behavior management can take a toll on anyone’s emotional and physical well-being, and all of this can lead to chronic fatigue.
It’s crucial to prioritize self-care to ensure you’re equipped to handle your child’s needs effectively. Below, is some information provided by Ed Carter of Able Futures for how to evaluate your fatigue levels and make a treatment plan that boosts your overall health and well-being.
Image via Freepik
How to Determine Your Relative Level of Fatigue
To improve your health, you must first identify your relative level of fatigue. Perhaps the simplest way to do this is to fill out a fatigue assessment questionnaire, such as the Fatigue Severity Scale (FSS) or Perceived Fatigue Scale (PFS), to determine your stress level.
Comparing yourself with other parents of special needs children may help you identify if your fatigue is more severe than others, however Tammy Vice says “As a parent of a child with special needs, sometimes what we perceive as ‘normal’ can be way off the mark.” Take note of when you become more exhausted, how long it lasts, and if there are any specific triggers. Consider the changes in your own ability to cope. It may be time to get support.
Core Fatigue Causes to Consider
Some causes of fatigue are unique to being the parent of a child with autism. Daily responsibilities and added medical and therapy appointments can feel impossible to manage.
For instance, your child may exhibit repetitive behaviors and sensory overload, which can quickly drain you physically and mentally and make even the simplest tasks unbearable. Recognizing your specific fatigue triggers can go a long way toward helping you create a customized self-care plan that results in a higher quality of life for you and your child.
Things to Evaluate
Poor sleep quality, lack of social support, and the state of your marital relationship can severely impact your fatigue levels. Being a caregiver can interfere with your sleep quality, so take time to evaluate your sleep habits to see if you can make any healthy changes.
Lack of social support can contribute to feelings of isolation and loneliness, exacerbating your chronic fatigue and causing emotional burnout. Make sure you have people around you that you can count on! And honestly assess your marriage; the inability to manage stress and emotional turmoil effectively can lead to marital distress and exhaustion. Find ways to connect with your spouse, and remember that you’re in this together.
Pursuing Personal Goals
As a parent of a child with autism, your focus is probably solely centered on your child’s well-being. Therefore, it’s easy to forget about your personal goals. But having personal goals can strengthen your emotional health and self-esteem while improving your overall quality of life.
Take time to identify your personal interests, and establish goals or hobbies that can help rejuvenate your energy levels. It could be hiking a trail, crafting, or painting — whatever it is, setting aside time for yourself is crucial.
You could also return to school for an online degree. Studying online not only will give you flexibility and something productive to focus on, but it will also boost your career prospects in a field you’re passionate about. Click here for more info about earning a bachelor’s degree from an accredited university!
Minimizing Negative Outcomes
Though implementing self-care is critical, it’s equally important to avoid unwanted outcomes. Overcompensating for your spouse or overburdening your support network so you can take some time off can create resentment, adding to the existing stress.
Communicate with your partner and other loved ones to establish a support system that works for everyone involved. Accepting help from friends and family is essential, but too much dependence on them can cause increased stress and fatigue.
Conclusion
Being a parent of a child with special needs can be overwhelming. The complexity that comes with the daily responsibilities of advocating for and guiding your child will eventually take a toll on your well-being if you don’t address it.
Remember that self-care is not a luxury but a necessity. Take time to evaluate your fatigue level and triggers so that you can devise strategies that improve your quality of life. You might be surprised how quickly you notice more physical and emotional energy, which will help you to be the parent your child deserves!
Bio:With a history in financial planning, Ed Carter utilizes his expertise and knowledge to assist individuals with disabilities in securing their future. Navigating the complexities of financial planning can be challenging and overwhelming, particularly for those dealing with physical and mental disabilities. That’s why Ed founded Able Futures – a site dedicated to empowering people with disabilities by guiding them towards a stable and protected financial future.
Thank you Ed for providing this helpful info for parents who are caregivers.
Tammy Vice - Know The Hope 