Word by Word

We don’t watch a lot of television at our house. When I do have it on it is likely to be on HGTV. Tracy jokes that he needs to put parental controls on that channel. Because most of the good ideas I get from watching get added to his to-do scroll.

Recently I was watching a show called, “Fixer to Fabulous”. Truth be told, I don’t really watch this show, or many of the shows in full. The TV is on in the background while I do other things. I mainly just focus on the before and after portions. My favorite part is the reveal, where they pretty much show all of the before and after renovation in the last three minutes.

In this episode the crew had renovated a small home. One of the homeowners was a writer and they had to incorporate her writing desk into the living room. The crew built a desk that folded into a cabinet when not in use. When it folded down, they showed the homeowner the words they had painted on it. “Word by Word.”

That saying resonated with me. I had thought many times in the past about the possibility of writing a book one day, but the idea of it was overwhelming to me.

My daughter Corey told me to start with writing a weekly blog. This way I could write one story at a time. One sentence at a time. One word at a time.

Word by word.

I posted my first blog on December 31, 2018. Here we are, three years later. Counting this one, 152 blogs later.

My last post each year I highlight each of my posts for the year. Go back and read the ones you have missed. If you haven’t had the chance yet, go back and read our story from the beginning. It makes more sense that way.

“Begin Again” - The first of the year is a good time to begin again. I happened upon the book, “This Just Speaks to Me”, by Hoda Kotb. The title caught my eye because that is what I say about quotes that are meaningful to me. They speak to me. Her book highlights a quote each day. Her quote for January 1st was, “Get Back Up. Begin Again.”, by Brene Brown. In this blog I write about my intentions for the new year. After reading this blog just now, I realize that I still have some work to do. My tiny turtle steps didn’t take me too far. Looks like I need to “Get Back Up and Begin Again”. Again.

“Enthusiasms” - Individuals on the autism spectrum oftentimes have specific areas of interest. The late author, Clara Claiborne Park, was once asked at an annual autism fundraising conference where she was speaking how she dealt with her daughter’s obsessions. Her daughter was autistic. Clara responded, “Hmm, we’ve always thought of them as enthusiams”. Per Barry M. Prizant in his book, “Uniquely Human”, Clara did not try to direct her daughter away from her interests. Clara assumed there were reasons for her fascinations and that it made sense to her daughter.”

She sounds like a great mom to try to emulate!

Prizant says, “Nearly everyone has passions and interests. They fill a need; they give us pleasure; they make us feel good for reasons we may not always understand. They’re part of being human.” Prizant goes on to say, “When a person with autism develops an interest, we must assume that the particular subject of interest is a good match for that person’s neurophysiology and serves an important function.”

Prizant talks about using those interests to build connections, make the enthusiasm the basis for building a relationship.

This book is a must read for all humans. It could help some people to become better humans by helping them understand the differences and behaviors of others and to respond to those behaviors with compassion.

“Spirit of Hope” - As I continued reading the book, “Uniquely Human”, by Barry M. Prizant, I took to heart what he had to say about having hope. Prizant says, “The parents I know who cope the best are those who find a way to have faith and trust. The common factor is hope.” Prizant reminded me that human development is a life-long process.

“Hindsight is 20/20” - As I continue to research and learn more about autism, I realize that we may have made some different parenting choices, if only we had known better. We followed the advice of doctors. Now we know that even doctors do not have all the knowledge necessary to come up with the right answers. In this blog I talk about the book I had just finished by Lorenz Wagner, “The Boy who Felt too Much”.

It’s a story about renowned neuroscientist, Henry Markham, and his son Kai, and how they changed our view on autism forever. I could not put this book down. His son Kai was so much like Travis. Even though Kai’s father is a neuroscientist, he still made the parenting mistakes we made. He felt the guilt of not getting it right that we feel. He had plenty of funds, but still couldn’t find the right school setting.

Long story short, he did some research that resulted in the realization that individuals on the autism spectrum were not feeling too little. They were feeling too much. Withdrawal was not the disorder; it was the reaction to feeling too much. Sensitivity was not trivial. Individuals on the autism spectrum were living in an unbelievably intense world.

This book is a must read if you have an autistic loved one.

“If He’s Good, I’m Good” - I think as parents we try to mold our children to fit in with the world because if they do they will come upon less obstacles. If you’re parenting an autistic child, over time you come to realize they are not going to mesh with our world. And trying to make them into something they are not is doing more harm than good. Travis needed new glasses because his prescription had changed. By the time the employee told him that he was looking in the women’s section he had already found a pair of hot pink aviators. He wanted them. He said they fit on his face and his nose just right. I asked him if he was sure, and he said yes. Travis doesn’t care what people think. It took him a long time to get to that place. So, if he likes them, and they feel comfortable, then yes to the pink aviator glasses. If he’s good, I’m good. I think he will rock the pink glasses!

“Walk a Mile in my Shoes” - There is no doubt in my mind that we have made all of our decisions regarding Travis with the best information we had at the time. And with his best interest at heart. That doesn’t stop me from feeling guilt. Over the years Travis has been prescribed many medications. In his book, “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma”, Bessel Van Der Kolk writes about trauma medications such as Prozac hitting the market in the late eighties with some success. Van Der Kolk wonders if it was as easy as taking an antidepressant, depression would be a minor issue in our society. Instead, antidepressants have not made a dent in hospital admissions for depression.

Van Der Kolk says, “Because drugs have become so profitable, major-medical journals rarely publish studies on nondrug treatments of mental health problems. Practitioners who explore treatments are typically marginalized as alternative.”

Van Der Kolk also says, “These medications make children less aggressive, but they also interfere with motivation, play, and curiosity, which are indispensable for maturing into a well-functioning and contributing member of society.” He also believes that, “Drugs have displaced therapy and enable patients to suppress their problems without addressing the underlying issues,”

Any time I brought up weaning Travis off his medications and trying a natural path I was met with pushback from both Travis’s doctors and his schools. Some doctors have insinuated that I am hard to get along with when I question their advice. It’s not like we haven’t tried it their way. I find myself thinking that these doctors need to walk a mile in my shoes.

“A Little More Grace” - I belong to a couple of Facebook support groups for parents of children with high functioning autism. A mama posted in need of support. I describe the situation and her question. I was dumbfounded by some of the responses. Apparently, all of the perfect parents were available to respond that day. As parents we don’t always get it right. The mama did ask for advice. But people could’ve shown more grace in giving it. If we were sitting in a support group meeting, would these parents have said the same things? Or is it easier when one is sitting behind a keyboard? I have made a ton of parenting mistakes. I’m betting we all have. Knowing that to be the case, maybe we should all practice showing a little more grace.

“Harder for Him” - Raising a child on the autism spectrum is hard. Being an individual on the autism spectrum is harder. I am reminded of that regularly as we deal with day-to-day issues and he see how much Travis hurts.

“Until Infinity and Beyond” - Travis is a bit of a hoarder. If he had it his way, he would keep things until infinity and beyond. This is a situation that I simply have to stay on top of. As long as I am around, I am determined that his home will not end up looking like the homes you see on the hoarding television show. The one where family members say they had no idea if had gotten so bad. Travis doesn’t have the money to excessively buy, but he does excessively acquire. Travis is the person that stops and picks up the things left curbside marked free on them. He thinks he will find a use or have a friend that can make use of every item. There is a link between depression and clutter.

“Let the Rebuilding Begin” - One of my intentions for the year was to read more. I highlight what I am learning from reading the book, “The Power of Habit”, by Charles Duhigg. The central argument of the book is that habits can be changed if we understand how they work. Duhigg states, “when a habit emerges, the brain stops fully participating in decision making. So unless you deliberately fight a habit - unless you find new routines - the pattern will unfold automatically. The brain can be reprogrammed. You just have to be deliberate about it.” Let the rebuilding begin!

“Bumps in the Road” - I describe raising Travis as being on a journey to an unknown destination. His life is full of opportunities, but he needs to put in the work. As his family, we travel with Travis, by his side. My hope is that his journey takes him to a place of peace. A place where he finds joy. Along the way we encounter obstacles. Bumps in road. Covid-19 is the most recent bump. More like a mountain. Having a disability makes the climb more intense. Travis is simply unable to process the seriousness of the pandemic, although he is able to sense it. He soaks in the unease in the world and carries the extra weight of it with him. Travis lost many of his supports because providers were limiting their exposure.

“Take a Deep Breath”- I keep reading books and doing research in order to find ways to help Travis become the best version of Travis, to help him find joy. In doing so, I am learning tidbits that help me too. Help me be not only a better parent to Travis, but also a better person overall. I include some excerpts from Van Der Kolk’s book, “The Body Keeps the Score” about mindfulness. Van Der Kolk describes mindfulness as being able to hover calmly and objectively over our thoughts, feelings, and emotions and then taking our time to respond, which allows the executive brain to inhibit, organize and modulate the hardwired automatic reactions preprogrammed into the emotional brain. The capacity to be mindful is crucial for preserving our relationships with our fellow human beings.

As long as our frontal lobes are working properly we’re unlikely to lose our temper over small inconveniences. Our frontal lobes also tell us that people’s anger and threats are a function of their emotional state. If you want to manage your emotions better, you have to learn to regulate them. To regulate from the top (frontal lobes) of your brain down, practice mindfulness meditation and yoga. To regulate from the bottom up, recalibrate the nervous system with deep breathing.

When our systems are in balance, we feel like ourselves.

I showed up at Travis’s and found that he had filled a room that I had just emptied in order to remodel with stuff. I closed the door and took a deep breath. Inhale. Exhale.

“The Power of Love” - Writing this blog is my small way to bring awareness and education to those I reach. Hopefully by telling our story, I am doing my small part to teach more love and acceptance and less hate and stigmatism. I highlight businesses that parents started for the purpose of employing their children and others with disabilities. I am humbled by the time, effort and financial investment parents put in for their children to have the opportunity for a meaningful place to work. These businesses are an example of the power of parents. The power of love.

“Answer the Call” - After reading my last blog about parents starting businesses so that their child with a disability would have a meaningful place to work, a couple of friends contacted me to see if I had read a recent article in a local publication. The article highlighted TACT (Teaching the Autism Community Trades). TACT is a Denver, Colorado based nonprofit organization started by Danny Combs in 2016. He was inspired to start TACT by his son Dylan, who had been diagnosed with autism. Combs left a successful country music career in Nashville and moved back home to Denver, where he and his wife hoped to find more resources for Dylan. Combs knew about the high unemployment rate for individuals on the autism spectrum and decided to do something about it. Like the parents I highlighted in my last blog, Combs was called to a new purpose. And like those parents, he answered the call.

“Don’t Clutter the Soul” - Ridding our lives of toxic people is important to our well-being, but it can be hard. What if the most toxic person in your life is your child? I highlight an article, “Removing Toxic People from Your Life in 9 Steps”, by Katherine Hurst, at www.thelawofattraction.com. As I reread and then shared with you the nine steps of removing toxic people, I realize that I am making gains. Not necessarily in removing the toxic person, but in understanding that he is unlikely to change, working on boundaries, not getting involved in every crisis, focusing on solutions, owning my weaknesses, choosing battles and surrounding myself with healthy people. I have to continue to be patient.

I wrote in the past about hoarding and getting rid of stuff that clutters our space. When possible, also get rid of toxic people that clutter our hearts. Clean up your life. Don’t clutter your soul.

“Keep that Bucket Full” - Sharing our story has reduced the weight of the load I carry. Your comments and support have reminded me that I am not alone. I have had so many conversations with many of you about various blogs and stories. I so appreciate when my friends and readers make a point to comment. Tell me how you found us. Share your favorite Travis memory. One that you have experienced or one that you read about. Hearing from you fills my bucket.

“I am his Sidekick” - I shared a list of special needs mom’s superpowers that I found at a blog called “Love that Max” written by Ellen Seldman. To all the moms out there. You matter. You are doing the best you can. And that is enough. You are enough. But do you know who the superhero is in our story? Travis. Travis is the real superhero. He keeps fighting the big battles. I am his sidekick. And surrender is not an option.

“Too Much on my Plate” - I am actually in the process of writing a procedure manual detailing all of the things that I take care of for our family, but mostly for Travis. Do you think that is a sign that I have too much on my plate? I have joked that Tracy is going to be in trouble if I go first. Which led me to thinking there is something that I can do about that. There are pages to cover important topics like how and when to complete the annual legal guardian court report and representative payee annual accounting for SSI. Another page listing his specialists, their addresses and phone numbers, how often he sees them. When to expect his Medicaid redetermination. When his HUD voucher renews and scheduling the annual inspection…..

“We Can Do Hard Things” - It’s been another tough Travis week. Sometimes I wallow in how hard this all is. I am only human. This weekend I finished the book I am reading for my next book club meeting, “The Nightingale”, by Kristin Hannah. It tells the story of two sisters living in German-occupied, war-torn France during World War II. Per the back cover, “a heartbreakingly beautiful novel that celebrates the resilience of the human spirit and the durability of women.”

Suddenly I am able to regain a bit of perspective. It was like a smack upside the head. Corey is probably rolling her eyes right now. She doesn’t like me to undermine what I am feeling by comparing it to the hardships of others. She reminds me that it is ok to have rough days because what I am dealing with is hard too. At the same time, she is a big proponent of mental attitude, your mindset.

Various things happen that remind me that I can do hard things. This week it was this amazing book. In fact, we can all do hard things.

“We Could Use a Win” - Travis asked the owner of the vape store where he shops for a job. All on his own. Like he does regularly when he is out shopping. Only this guy said yes, let’s give it a try. So, I asked my readers to pray or send positive energy and good vibes our way. As one of our friends told us, we could use a win!

“Collect Moments not Things” - Our family rented a houseboat at Lake Powell. This is one of my favorite vacations, we go about every five years. Tracy and I celebrated our 30th anniversary this year and decided to celebrate by taking this trip. It was a good plan because we can drive there, we would only be around our immediate family, and it was outdoors. Take that Covid-19! I feel most at peace when I spend time in nature. Nature has a way of soothing my soul. The scenery at Lake Powell is majestic. I love going on adventures with my family and making memories. We collected a bunch of beautiful rocks. And we collected a bunch of beautiful moments. My bucket needed this trip!

“What if?” - A friend of mine shared a post on Facebook that contained the following statement, “I AM 100% AGAINST DEFUNDING THE POLICE. I ACTUALLY THINK THAT THEY DESERVE MORE PAY! I BET YOU DON’T HAVE THE GUTS TO SHARE.” Let me just say that personally, I never share these types of general statements on Facebook. But now and again I will comment on them. My feeling is that they are just that, too general, and in my opinion can cause more harm than good. Rather than starting a healthy conversation, oftentimes comments on these posts can become mean and argumentative. Is it even possible to have a healthy conversation on social media?

I can tell by her Facebook posts that we don’t always see eye to eye. But we have a great love and respect for each other and can appreciate each other’s differences. I chose to respond. Here is what I said: I don’t want to defund the police. I’m open to learning more about using some of those funds to have the department hire individuals with mental health backgrounds to assist the police on calls involving a mental health crisis. I’m concerned about my son on the autism spectrum and with a mental illness getting hurt during a meltdown because he is misunderstood. To which my friend replied, “Glenda, I agree with you 100%”.

I followed a local news story about a young man named Elijah McClain. This happened right here in Colorado. The police were called because there was a young man that looked sketchy walking down the street. Read this blog for the details. Long story short, this young man was autistic, didn’t behave as expected, although also not violently, and ended up dead. And I think to myself, what if? What if there was a social worker or mental health professional on that call? Would Elijah still be alive today?

“Building Our Community” - What an amazing group of friends and family we have, our community. We have so many people in our lives that care about Travis. And us. We are grateful to everyone that has shown their love and support to our family. Your good deeds are imprinted on our hearts. There are just too many good deeds to mention, but I did cover a bunch in this blog! Too many to even recall! As I think about all the ways others have stepped up for our family, I realize that we have been building our community for years.

“Peace of Mind” - My goal for the year was to read a book per week. I am falling behind. If I actually finished all the books I have started I might still be able to reach my goal! This weekend I finished, “Almost Everything, Notes on Hope”, by Anne Lamott. She has a lot of great things to say, and all things that I needed to hear. Such as, “There is almost nothing outside you that will help in any kind of lasting way, unless you are waiting for a donor organ. You can’t buy, achieve, or date serenity. Peace of mind is an inside job, unrelated to fame, fortune, or whether your partner loves you. Horribly what this means is that it is also an inside job for the few people you love most desperately in the world. We cannot arrange lasting safety or happiness for our most beloved people. They have to find their own ways, their own answers.” In other words, maybe I should expend my energy working towards my peace of mind.

“Adulting is Hard” - Travis’s new job only lasted six weeks. I tried using some of the experiences Travis had during this time as teachable adulting moments. He still ended up taking the easy way out. He gave the two weeks notice I advised him to do but called in sick on his days.

“No Rest for the Weary” - I was feeling quite sick. In the back of my mind, I wondered if I had a breakthrough case of Covid-19. I bet we have all wondered that at different times. But I still had to get out of bed and complete the annual legal guardian report because it was due. And take eight calls from Travis. And write and post my blog.

“Needle in a Haystack” - I watched a segment on “60 Minutes” called “Talent on the Spectrum”. The show highlighted that many individuals on the autism spectrum are either unemployed or underemployed. One of the businesses highlighted was AutonomyWorks. The CEO and founder Dave Friedman, has a son, Matt, on the autism spectrum. He founded AutonomyWorks to create jobs for people with autism or other disabilities. Their website states, “The CDC estimates that over five million adult Americans are living on the autism spectrum. Furthermore, the CDC estimates that 1 in 59 children has autism. It is the fastest-growing disability in the country, doubling in the past 15 years.

In the next decade, 500,000 individuals with autism will graduate from the school systems into the work-world. Based on current statistics, nearly 80% of these adults will be unemployed or underemployed. Of the few lucky enough to have jobs, many are stuck in low-skilled, manual labor positions that fail to develop their skills and talents.”

The CDC estimates that one third of individuals on the spectrum have significant intellectual disabilities. Autism impacts people in a wide array of ways. Travis falls into this category. He also has severe mental health issues. Finding a good job fit for him may be like finding a needle in a haystack.

“The Healing Power of Laughter” - Another tough Travis week. But at the end of the week Tracy and I took a trip to Kansas and spent some time visiting with family members, some that we hadn’t seen in a long time. We had cocktails and a barbeque out at the family farm. We sat in a circle visiting and did lots of laughing. It took my mind away from the worrying, even if just for a while.

“Walk the Talk” - I have written in the past about caregivers needing to take care of themselves. In this blog I highlighted some of the things I have started to do for me. I am starting to walk the talk!

“Easing his Way” - I came upon a story on People.com about a 12-year-old boy with autism that was facing felony charges for making violent statements at school. Ultimately the felony charges were dismissed. But not before putting the family through a lot of stress and being a huge waste of taxpayer money. The mom said that her son was completely unaware of his felony case. There have been instances where I did the same thing as this mom. Protected my son from some painful incident. Especially the ones that Travis would not understand and were out of his control. The writer, Anne Lamott, says, “You want to protect your child from pain, and what you get instead is life, and grace; and though theologians insist that grace is freely given, the truth is that sometimes you pay for it through the nose. And you can’t pay your child’s way.” I can’t pay Travis’s way. But I can certainly ease it.

“He has a Good Heart” - This week I came across an article on www.Today.com, “Why there’s a war between parents of children with autism and autistic adults”. Read the blog to read the article, but suffice it to say there is some controversy around parents of children with autism sharing information about their children online. The article was thought provoking for me. Travis did give me permission to write his story. At the same time, Tracy and I are his legal guardians because he is unable to make sound decisions. In the end, I came to the conclusion that Travis would want me to share his story. He has a huge heart. He errs on the side of helping people. If his story in some way helped even one person, he would want me to share it. Even the hard parts. How can I be so sure? Because when he saw me reading a book with a picture of a boy on the cover he asked me what it was about. I told him I was reading about a boy like him with the hope of finding ways to help him. And he immediately asked if I was going to write a book about him some day. Meaning maybe his story could help others down the road.

“Back to Real Life” - Four glorious days. That is how long my bucket filling girl’s trip to Port Aransas, TX lasted. In the North Padre Island area. The girls and I had a blast. The house rental came with a free golf cart and we buzzed around town and the beach with it. We had some leisurely meals at restaurants, did some shopping and some sight-seeing. Most of all, we did a lot of laughing. Which is so good for my soul. I put my phone on airplane mode during the trip home. The buzzing and beeps started the moment I turned it back on. And just like that, I was back to real life!

“Pulls on Your Heartstrings” - A friend of mine gave me an article titled “Reversing Autism”. After looking more closely, I realized it was an advertisement. This mom believes she has cured her son of autism, and for a fee can help you too. Her plan consists of an extremely restricted diet. Then she talked about detoxifying her son from heavy metals. She states in her article that over 90% of children with autism have Lyme disease. I found it hard to believe that was the case. I have spent so much time researching and had never heard that before. Then the mom gave her son supplements for brain support and focused on repairing the brain with craniosacral therapy.

I researched her claim about Lyme disease and immediately found a study that debunked her claim. Her website shares some testimonials, but the mom is quick to offer a disclaimer that each child is unique and has a different timeline to their own level of recovery. Each family has to make their own decisions about the best treatments for their child. Make the best decisions you can for your family. But at the same time as the quote says from Barbara Mikkelson, “Beware the pull on your heartstrings - it’s often the pursestrings that are actually being reached for.”

“Collecting Experiences” - As I look at my life, I realize that I have less time going forward than I do behind me. I want to make sure that I make my moments count. I also want to be sure that I am leaving good memories of me in the hearts of others. I want to focus more on collecting experiences. Add some things to your calendar - events with friends and family. It’s important to your well-being.

“Spread the Word” - This blog highlights an article I read by Dr. Liz Matheis, “Should You Say Special Needs or Disability at www.the mighty.com. I also highlight the article, “Why the R-Word is the R-Slur”, at www.specialolympics.org.

“Broad Shoulders” - Travis has no understanding of the hours I put in trying to help him to feel better. One thing he knows for certain? When something is not, in his opinion, right in his life. It is mom’s fault. Good thing I have broad shoulders.

“Parenting is Hard” - Provider and caregiving agencies are currently grossly understaffed. Travis’s last provider gave me a one-week notice. I texted Travis’s case manager when I received the notice. She texted me back, “So that leaves literally no one for Travis.” (Meaning to provide his home and personal care.) To which I responded, “Except me”. Did I mention that parenting is hard?

“Be Part of the Solution” - In this blog I highlighted a couple of different caregiver credit acts. The Social Security Caregiver Credit Act of 2014 never passed. It continues to be discussed. An article describing the act by Leah Newman in September 2014 states, “Millions of Americans serve as caregivers for their family members, but when your full-time job is caring for a loved one, you may be missing out on more than just a paycheck. Once you’ve retired, your monthly Social Security benefits are based on the amount you earned during your working years. During any period of time that you’ve taken off to care for an ill or disabled loved one, you’re not paying into Social Security. That means you’re missing out on both a paycheck now and one during retirement.”

There is a more current act, the “Credit for Caring Act”. The bipartisan bill would provide up to $5,000 federal tax credit for eligible working family caregivers which could help defray the families out of pocket expenses for caring costs. The bill, unlike the existing child and dependent care credit, would help family caregivers who care for non-dependents or who do not live with the person they are assisting.

Is there something we can each do to be part of the solution? To take some of the strain off caregivers? Well for one we could support this type of legislation.

“Love is a Promise” - I shared this quote in a previous blog, “Love is an unconditional commitment to an imperfect person. To love somebody isn’t just a strong feeling. It is a decision, a judgement and a promise.” Love is a promise. I made a promise to an imperfect person. I do my best to keep my promise to Travis, to never give up on him. Some days my best looks better than others.

“It Takes a Village” - I watched a movie called “The Wisdom of Trauma”. This blog highlights the takeaways from the movie and in my opinion is a must read if you haven’t already. Dr. Gabor Mate is featured in the movie. He is an expert in addiction. Mate says that addiction is the result of wanting to escape reality rather than cope with it. The first issue to address is not why the addiction, but why the pain? Addiction isn’t the primary problem, but really a response to trauma. In order to heal the addiction, you have to heal the trauma. We need to start seeing each other as what happened to us, not what is wrong with us.

My thought is that maybe we need to continue on with the idea that it takes a village. Something like, it takes a village of great hearts to heal great hurts.

“Side by Side” - Sometimes I describe my life as being on a roller coaster ride. So many ups, followed by so many downs. I can’t see around the corner, but I am whooshed there just the same. Sometimes I get that sinking feeling in my stomach. The moment you begin to relax and think this is not so bad, you’re whipped in a different direction. And off kilter again. Sometimes I am hanging on for dear life. Sometimes I close my eyes and take some deep breaths. I cannot tell you how happy I am to have my best friend sitting next to me on this roller coaster ride I call life. He holds me when I am unsteady on my feet. Our love for our son makes it worth the ride. It’s so much easier because we do it side by side.

“No Matter What” - Travis adopted his dog Sheila from the local humane society. The paperwork said that she was high energy and had poor impulse control. I’m sure he didn’t read the paperwork or ask them to read it to him. We had hoped she would grow out of what I call her exuberance. That hasn’t happened. So, I booked a consultation with a trainer. Because when we adopt in this family, it’s forever. No matter what the behaviors. No matter what things get damaged. No matter what.

“Desperate or Determined” - I looked at Craigslist ads under the section rooms wanted. This is the section people will post in when they are looking for a place with a room to rent. I understand that this is not an ideal way to find a live-in aide for Travis, but desperate times call for desperate measures. Some may call it desperate. I’m going with determined. You be the judge.

“Ducks in a Row” - We found a live-in aide for Travis. He passed the background check. He isn’t currently working as he is caregiving for his terminally ill father. He is recently divorced. He interviewed well and seemed like a good fit. Maybe earning free rent and utilities and some some additional funds for providing some help with cooking and cleaning will help this guy to get his ducks back in a row. Maybe with his help I can get my ducks back in a row. I have this one duck…

“Granting Myself Grace” - There are a lot of loose ends of recent decisions that are in process, that may or may not end up in the good decision category. More on those decisions on another day. I am once again feeling overwhelmed but remind myself to be in the moment. To not worry about the future today. I am focusing on granting myself grace. I am making the best decisions I can based on the information I have. I am doing my best.

“Sand in the Hourglass” - Finding new stones to unturn is getting harder. Some unturned stones led to ideas or therapies that we chose not to try because they were not a good fit for Travis or our family. Many unturned stones led to ideas that we did try without results. The problem is that it is difficult to determine actual results. For many reasons. Travis pinky swore that he would try what I came up with. But oftentimes he put forth little effort. Was he capable of more effort but he thought the idea was stupid? Did his mental illness tell him that he didn’t have what it took to put forth more effort? Did his intellectual/developmental disability get in the way of Travis understanding what was expected of him. Or was he giving it his all? If Travis isn’t going to or isn’t capable of participating in his health and well-being, how much can I really do to help him?

Would I be better served spending more time on myself? My health? Doing the things that bring me joy? With the people that bring me joy? If I take better care of my own needs, will I be better able to parent him? Just as he is. I need to rethink how I am investing my time. There is only so much sand in the hourglass.

“Sitting on the Sidelines” - I have enjoyed playing in a fantasy football league with my friends over the past few years. I was listening to football while making candy for Christmas gifts. The pre-game show was highlighting a story called “My Cause for Cleats”. This week the NFL players showcased custom cleats that represent the causes they support. My interest was piqued because I heard the broadcaster talking about Corey Linsley of the Los Angeles Rams and his wife, Anna. His cause is CASA (Court Appointed Special Advocates). Hey, that is my cause too! The holiday season is a good time to support your favorite charity. If you’re unable to make a donation of money to a charity, consider making a donation of your time. Don’t just sit on the sidelines.

“Words Matter” - One minute Travis and I are having a good conversation. He was planning to come to our house to visit his dog Sheila and have dinner with us. Then less than an hour later he called and lost it with me. I can’t say for sure what happened between the two phone calls. What I can say for sure it that he was saying some pretty hateful things to me. In the interest of maintaining boundaries, I wouldn’t listen to it and told him that I loved him and was hanging up. He called back time and time again continuing on with his rant. So, I turned my phone off. Which only made his behavior worse. He sent me several texts and audio texts. Then he started blowing up Tracy’s phone. His words led me to contacting his psychiatrist and forwarding the most concerning texts.

We can all get frustrated at times, but we need to be careful with our words. Words matter.

“Word by Word”

Wow. I covered a bunch of topics and a bunch of feelings this last year.

On to 2022! I know I have said this many times before, but I want to be sure every single one of my readers know how much I appreciate you. And for my tribe, you seriously help me get through the most difficult days.

“When asked, how do you write? I invariably answer, one word at a time.” - Stephen King

“A writer’s high doesn’t come from thinking about the end result, only of the moment, one word, one sentence, one phrase at a time.” - Author, C.J. Heck