Finding Purpose

It’s hard to believe that I have been writing our story for two full years now.

I feel like I spent the first year finding my voice.  During this second year I feel like the writing has come a bit easier. But where do I go from here? I need to figure out what my next step is.

I do want to say again that I have Travis’s permission to write our story. This blog is the story of a mother’s journey supporting a son with autism and mental health struggles. He doesn’t follow the blog. He struggles with reading. But we talk about what I’ve been writing.

Travis’s depression tells him that his life is without purpose.  I tend to bring up writing our story during these times.  I remind him that sharing his story is teaching and helping others.  Maybe a reader learns to show compassion when they come upon an individual that is struggling.  Maybe a reader gets an idea of something to try with their own struggling family member or friend.  His life has purpose. I remind him that he has brought out the best in me.

I have experienced a great deal of feelings throughout these two years of writing. I am reminded just how much Travis has been through in our quest to help him. And we feel the need to keep on trying. Because he truly is unhappy and wants more out of his life. And because I made him a promise that I would leave no stone left unturned. In return Travis pinky swore to try whatever I asked.

Today I would like to recap the blogs for this past 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.

·         “Finding My Voice” – Highlights and description of each blog my first year of writing.  After a full year of writing I think that I have found my voice.

·         “Nine Times a Day” – That is the average number of times a day that Travis calls me.  I wonder if Travis understands that I have a life outside of being his mom. He calls because he needs help navigating a social situation.  He calls because he wants me to transfer money.  Sometimes he calls to just touch me.  To make sure that I am there.  It steadies him.

·         “A Fresh Start” – Travis informed us that he had no intention of attending his last year of his 18-21 transition program with our local school district.  Travis’s education journey had been a rocky one.  Maybe it was time for a fresh start.  But where to begin?  Travis was twenty years old at this point and our goal had always been for him to live as independent a life as possible.  We bought a mobile home and got Travis set up to live on his own.

·         “Left to His Own Devices” – Now that Travis is in his own home, I need to figure out a plan for him. I knew that he could not be left home alone all day, left to his own devices.  Travis was on a waiting list for Developmental Disability (DD) services through the State of Colorado.  In the meantime, I got him set up with the Mental Illness (MI) waiver. 

·         “Home is Where Your Cat Is” – One of the first things that Travis wanted when he moved out was a cat.  Travis did not immediately get a cat.  Tracy and I lived with Travis for about six weeks when he moved into his own place.  I am allergic to most cats.  Later I took him to the humane society where he rescued his cat Alsoa.

·         “Work in Progress” – Sometimes I get what I call, “Travis-ed out”.  Living it.  Writing it. It’s a lot.  I write about my struggles and why I consider myself a work in progress. 

·         “Help Others to Open Their Heart” – I went on a much overdue girl’s trip to Sedona, Arizona.  We had an amazing time, and it was just in the nick of time.  Covid-19 hit the country hard a few weeks after we got home.  We had some inclement winter weather to navigate.  The universe must have known how much I needed this trip.  On a hike in Boynton Canyon we met Robert.  He stopped us and gave each of us a heart-shaped stone that he had carved.  He asked us to take the heart and feel the love.  And to pass the love on wherever we go.

·         “First Impressions” – The lectures I gave my kids as they were growing up had titles.  I had a lecture called “First Impressions”.  Travis knows no strangers and has had to learn a lot of hard lessons.  I like to meet Travis’s “friends” before they are allowed to hang out at his house.  I am better at reading people and their intentions.  And first impressions are important.

·         “Try, Try Again” – Over the course of time we began to realize that it may be hard for Travis to become gainfully employed.  Travis has participated in many internships and we set up other possible work experiences.  We found that if at first you don’t succeed, try, try again.

·         “Life Goes On” – I owned my own businesses while raising my children.  We didn’t weigh out the pros and cons of owning a business while raising kids, we just figured it out as we went.  Would it have been better for my kids if I didn’t work?  Or if I worked regular hours for someone else?  I don’t know.  What I do know is that life goes on.

·         “Turtle Shell” – One day out of the blue, Travis called his home his turtle shell.  I immediately understood what he meant, that his home is his safe place, his shield that protects him from the outside forces.  This blog covers the requirements to obtain a HUD voucher.

·         “Social Distancing” – Guess what my biggest concern is during Covid-19?  My boy.  He has many underlying medical conditions.  He needs his services, but they are cutting back in order to honor social distancing.  Which I understand.  I’m worried because he needs his routine.  Just how good is he going to be at social distancing?  He doesn’t understand the concept of personal space.

·         “Another One Bites the Dust” – Another waiting list bites the dust.  We thought Travis was going to have to wait ten or more years to get I/DD services through the State of Colorado Medicaid waiver, but Colorado found a way to offer Supported Living Services and clear the list.  This blog details how these services are acquired and the process of getting services set up.

·         “We’re a Team” – It takes a team of people to support an I/DD individual to be able to live as independent a life as possible.  As team members come and go I realize that the backbone of team Travis is me and Travis.

·         “Is it Worth It?” – Travis obtained services through the Division of Vocational Rehabilitation.  (DVR) As he worked through the process I began to wonder if the process was doing more damage than good and if it is worth it.

·         “Roll Up Our Sleeves” – DVR did not want to support Travis with a temporary opportunity he had at Spirit Halloween.  I managed to get his DVR counselor to allow the job, mostly because they were not funding the payroll, just the job coach.  The job coach sent an email to the team highlighting Travis’s weaknesses during the experience instead of strengths.  I had to remind his team that if Travis was capable of seeing what needed to be done and doing it on his own accord; if he was great with relationships and doing what is asked; or even taking constructive criticism well; if he was motivated; if he cared about or understood the importance of his appearance; then this team wouldn’t be necessary.  Let’s roll up our sleeves to continue to find ways to work with him successfully to better prepare him for the working world.

·         “Trusting My Instincts” – Travis tried a position washing dishes at a restaurant.  I was certain the activity in a busy kitchen would be too loud and chaotic for him, but I let him give it a shot.  It was short-lived and getting let go was a big blow to his self-esteem.  I should have trusted my instincts.

·         “Night to Shine” – Travis attended our local “Night to Shine” prom twice.  This event is financially supported by the Tim Tebow Foundation.  This blog details the experience.

·         “Winning the Lottery” – Some of the therapies that we have tried with Travis, or considered trying pulled on my heart strings.  We tried some, but later walked on others because we learned the hard way that results needed to be documented in a scientific clinical study, not just anecdotal evidence.  I decided that I would need to win the lottery to pay for a neurofeedback contract that I had received from an evaluation.  Travis would need to be dressed and ready to go, happy about it, with no complaints for 60 weeks.  I decided winning the lottery was more probable than Travis being a willing and happy participant.

·         “Glass Half Full” – When Travis was seven we took a vacation to Disney World.  We participated in many activities.  All he remembered was that he was not able to swim with the dolphins because I did not book it in advance.  A few years later he and Tracy came to Orlando with me on a business trip.  We stayed an extra day and booked a dolphin trainer for the day experience for Travis at Discovery Cove.  The experience was quite expensive but I decided with my glass half full attitude that it would be well worth it if Travis stopped complaining about not swimming with the dolphins on our past vacation.  And it worked.

·         “Fish Out of Water” – We became scuba certified as a family.  Travis loves the water, it has a calming effect on him.  This experience was WAY outside my comfort zone.  But as my ending quote says, “To show someone how much you love them by doing what they love to do is an extraordinary gift.”  - Rick Hamlin

·         “Together We Are Stronger” – I am a member of a couple of Facebook groups.  Oftentimes I will read a post about a single mom with a child or children on the autism spectrum.  Or a married mom will post about not getting any help from her husband.  Tracy and I tag team when we see the other faltering.  Together we are stronger.  This blog also highlights a father/son fishing trip to Alaska for Travis’s 21st birthday.  Great pictures!

·         “She Lets Me Be Me” – I was sitting in on an evaluation DVR scheduled for Travis with a psychologist to identify supports and rehabilitation needs for successful community employment.  In her evaluation the psychologist stated, “It was clear that Travis has a good relationship with his mother and he noted, She lets me be me, she gets me.  That seems to be the most important component for his success.”  Travis wants to be accepted just as he is.

·         “Definition of Insanity” - This blog highlights DVR experiences and my frustration as the team kept putting Travis in the same type of situations that were unsuccessful in the past.

·         “A Safe Place to Be” – Travis does better in smaller groups.  With people that know and accept him, quirks and all.  People that take the time to learn about his interests.  When we are surrounded by people that love and accept him, I’m  free to be myself.  Without worry. I don’t have to keep a watchful eye on him, because he is engaged with others.  This blog talks about our Father’s Day experience at the cabin with our immediate family and some close friends.  When Travis is surrounded by people that let him be him without judgement, that is a safe place to be.

·         “One Day at a Time” – Mental illness is a fierce opponent. I have to be honest.  I don’t know much about what it feels like.  But I can certainly see what it looks like.  And it is hard to watch.  We just continue to take each day as it comes.  One day at a time.

·         “In a Perfect World” – Being a legal guardian for your adult child can be overwhelming.  We are beginning to realize that Travis is going to need this level of support his entire life. Which means beyond our life spans.  This blog also highlights the need for a special needs trust.  Parenting a child with special needs is just plain hard.  So many decisions.  So much planning for the future.  Do we have enough set aside to retire and also take care of Travis when we are gone?  In a perfect world, I would know all the answers, make all the right decisions, and be able to predict the future.

·         “Out of Sorts” – Travis was out of sorts this week because he had to stay with us after getting a tonsillectomy.  He needs his routine.  He was unable to smoke his vape or cigarettes so ne was going through nicotine withdrawal while recovering from surgery.  I did buy nicotine patches, but he refused to try them.  We were all beat.

·         “As Confusing as it Sounds” – After a job assessment, Travis’s team deemed that he was not ready for community employment.  One of the team members that participated in this meeting was his DVR counselor.  The assessment stated that Travis could continue in this position with a 1:1 job coach, but DVR refused to fund it because it was not at a community job.  DVR agreed that Travis needed that level of support to work towards a community position but then said they wouldn’t help.  Even though they set up this position.  It’s as confusing as it sounds.

·         “Jumping Through the Hoops” – DVR decided to close Travis’s file.  They sent a letter stating that it was because he chose not to work in a community position.  This was not the case.  Travis’s team decided that he was not ready.  We did not appeal the decision.  The team decided that jumping through the DVR hoops was doing more damage than good for Travis’s self-esteem.

·         “Must Be a Better Way” – This blog highlights Travis’s experience continuing on at his jewelry making job.  We continued there for some time with his 1:1 job coach.  Then came Covid-19. The store decided to no longer support individuals with disabilities in the jewelry production.  I asked the supported employment staff to apply at Spirit Halloween for a temporary position.  Five years later we are going back to where Travis began.  There must be a better way.

·         “The Good Stuff” – We had an emotional week as we lost Tracy’s mom to cancer a year ago, but we were starting the impossible task of going through her things.  We had to protect Travis from the process.  His brain has a tendency to focus on unhappy memories, he needs help to remember the good stuff.

·         “Back in the Day” – I am a member of a couple of Facebook groups made up of parents of children with high functioning autism.  They were speaking a language that I did not understand.  I did some research to get a better understanding of the newer terminology.  Back in the day, when I was initially trying to get to the bottom of Travis’s diagnosis, Autism Spectrum Disorder was the diagnostic label given to a broad category of neurodevelopmental disorders.  What used to be called Asperger’s is now called high functioning autism. 

·         “A Letter to My Son” – This blog is written in the format of a letter to my son. 

·         “Making the Team” – It took years to build a supportive team for Travis.  I refer to this group of professionals as Team Travis.  The main team members besides me are his family physician, psychiatrist, therapist and his case manager.  Others, such as job coaches, come and go.  This blog shares the story of Travis outgrowing his pediatrician and how his current physician made the team.

·         “Without a Doubt” – Does anybody ever really know all of the answers?  Travis’s potential is still developing.  My advocacy is about the possibilities.  One decision I have never second guessed is adopting Travis.  I know without a doubt that it was the best decision for him.

·         “Travis Tuesday” - I’ve been doing Travis Tuesday for several years. Let me think for a second. We moved Travis into a place of his own seven years ago. So I have been doing Travis Tuesday for seven years. Tuesday is the day I reserve for Travis. I do spend other days with him. But Tuesday is the given. I make all of his doctors and dentist appointments on Tuesday when possible. I used to take him to his Tae Kwon Do class on Tuesdays. Before Covid. We run his errands and go grocery shopping. His errands can be anything from taking his cat to the veterinarian to putting gas in his car.

·         “Strength of a Warrior” – In this blog I tackle the topic of Travis’s mental health issues.  Travis suffers from chronic depression and anxiety.  But his mental illness goes way deeper than that.  It’s about more than being bullied.  And it is not just the trauma of living with autism.  It is my belief based on research that I have done that Travis’s trauma began in the womb of his birthmother.  In addition to that trauma, we have the adoption itself.  Some adoptees suffer a primal wound.

·         “Just Be Kind” – Travis has an “invisible” disability.  You cannot tell that he has a disability by looking at him.  Because his disability is not obvious to people that do not know him, people have a certain expectation of him.  Some people have been unkind when Travis doesn’t behave as expected.  “Societal reactions to hidden disabilities can be harsh.”  Since we do not know someone else’s story, why don’t we just be kind?

·         “Not for the Faint of Heart” – Keeping Travis’s services going is a never-ending project.  It would be easy for him to slip through the cracks without constant advocacy.  Advocacy is not for the faint of heart.

·         “Walking on Eggshells” – Travis can be fine one minute and not the next.  I have used the term walking on eggshells for years.  I found a book with this title and highlight some takeaways from the book.  It is a great read.

·         “Be Careful What You Wish For” – Travis got a two week position at Spirit Halloween.  The good news is that he is really happy.  The bad news, beside him wanting to spend all his money on costumes and noodles?  (Noodles and Co. is next door.) I have to notify all of his benefits that he has a job.  And then again in two weeks when the job is over.  I was hopeful that he would get this job opportunity.  Be careful what you wish for.

·         “I’m the Lucky One” – A Facebook friend shared a post that I found to be offensive. It was a picture of someone unknown to me stating their opinion.  It asks, “What is privilege? Privilege is wearing $200 sneakers when you’ve never had a job.  Privilege is wearing $300 Beats headphones while living on public assistance.” Read this blog to read the rest of her opinion.  I respond to her in my blog, although she in all likelihood will never see it.  I would much rather be the woman I am today than the woman that wrote this opinion piece.  I’m the lucky one.  Living my life has taught me what a “privilege” it is to help and make a difference in the lives of our most vulnerable citizens.  Living my life has filled my heart with love, not spite.  I hope the woman that wrote that article finds her way to a softer heart.

·         “The World We Live In” – This has been a tough year.  Covid-19 has changed the world for all of us.  My family has had to keep a watchful eye on two separate wildfires, each threatening much loved properties.  The current political climate is the worst I have had to endure in my lifetime.  Never did I imagine that I would be ridiculed for wearing a mask.  Never did I imagine that I would be nervous to drop off my ballot.  Three of the largest wildfires in the Colorado/Wyoming area are human caused.  Because someone selfishly did not follow the rules.  That’s the world we live in.

·         “Strong Enough to Carry Him” – Covid-19 has made it difficult for me to do the things I need to do for myself to keep my bucket full.  I have not had a massage in several months.  I cannot see my CASA kiddo in person.  I was unable to get to the cabin because of wildfires. Travis is also struggling through the changes Covid-19 inflicted on his life.  Sometimes I feel like I am treading water and also trying to keep him afloat.  He is getting heavy.  Am I strong enough to carry him?

·         “An A-Ha Moment” – This week I thought I would take you through my typical week of caregiving, so that you can better imagine why my bucket might end up being so dry.  One of the appointments that I had with Travis was a visit to the respiratory therapist to get fitted for a Bipap machine.  Travis used his phone to videotape the therapist showing him how to take the machine apart and put it back together.  The therapist wanted to give Travis a card with his phone number on it.  Travis asked him to add his contact information directly into his phone.  The therapist asked Travis to call him in two days to let him know how he was doing with the Bipap.  Travis asked the therapist to call him instead, saying that he knew he would forget to.  I had an “A-Ha” moment.  Travis is learning to recognize his own needs.  Maybe I can take a step back.

·         “Less Doing and More Being” - Corey and I had a nice, long, and overdue phone conversation. Corey made some very good points and very gently opened my eyes to a couple of things about me that I needed to spend some time reflecting on. She is not only a terrific daughter, mother and wife. She is also a terrific human being. I am so proud of her. She has a heart for helping others and has developed a business doing just that. During our conversation Corey acknowledged that I have been doing a great job of unturning stones for Travis. She shared that it’s possible that my bucket is running dry because I am spending too much time “doing” and not enough time “being”. She told me that I was allowed to spend some of my time “being” without feeling guilty.

·         “The Best Medicine” – I did a thing. I know, I know. The practical side of me is thinking this is a bad idea. For a lot of reasons.  The emotional side of me is arguing. Let’s do it. It could help. No. You have enough on your plate.  Yep. Travis adopted a puppy.  She gives him tons of love and kisses. I watched him as he laughed. They say laughter is the best medicine. That and the love of a dog.

·         “Being Human” - I belong to a couple of Facebook groups for parents of children with high functioning autism. “Uniquely Human, a Different Way of Seeing Autism”, by Barry M. Prizant, PhD with Tom Fields-Meyer was recommended by a parent in the group.  Prizant says, “Autism isn’t an illness. It’s a different way of being human. To help children with autism, we don’t need to change them or fix them. We need to work to understand them, and then change what we do.  A different way of being human. I like that description.

·          “Dig Deeper ” – I feel like I have done a pretty good job of trying to figure out how best to help my boy. I will continue doing my research. I will continue to dig deeper.  In this blog I detail more of what Prizant says in his book, “Uniquely Human, a Different Way of Seeing Autism”.  I learn more with each book I read, and this is a good one. 

·         “Make A Life” – “We make a living by what we get. We make a life by what we give.” - Winston Churchill   Giving isn’t just for the holidays. Giving isn’t just about material gifts. I find my joy in giving of myself. My time, my support, my love. Supporting a loved one with autism and mental illness can be exhausting. Managing life during a pandemic is hard. But I will continue to do what I do best. I like the quote I started with. By giving, I am making a life. And maybe not just my own.

I want to thank each and every one of you for taking the time to read our story. And for continuing to follow our story in the next year. I have appreciated all of your support and comments. And our conversations when I see you. You are learning about what makes me the woman I am today. And why Travis is the man he is today.

Have a Happy New Year!!

“Don’t worry about trying to find your life purpose. Instead, start by acting on the small things that excite you each day. These are the threads that will connect you to your path, passion, and purpose in life.” - Ruben Chavez

“If you want to find your purpose in life, find your wound.” - Rick Warren