Finding My Voice
I cannot believe that an entire year has passed since I began writing our story. I published my first blog on December 31, 2018. I am proud of myself. My goal was to post one article each week on Mondays. And I have met that goal. I must admit that there was a Monday or two that it was getting close to midnight, but I made it!
I have spent the last year finding my voice in my writing. I think I have succeeded. I have had a few readers comment that they could hear my voice in their head as they read. That was my intention. If the readers that know me personally can hear my voice as they read, then the readers that found my blog that do not know me, are getting to know the real me.
I do have Travis’s permission to write our story. This blog is the story of a mother’s journey of supporting a son with autism and mental health struggles. He doesn’t follow the blog. He struggles with reading. But there has been a time or two that his case manager and I have discussed a particular blog topic with him. He wants to tell me what I should say or add to the story. And I remind him that this is our story from my perspective.
Understanding that the journey from his perspective is a completely different one, I’m sure.
I have experienced a great deal of feelings throughout this first year 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 he 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.
“The Origin Story” - When Travis was nine he saw me reading a book with a picture of a boy his age on the cover. He asked me if I was going to write a book about him. I told him maybe one day. He asked what I would call the book and I responded without hesitation, “No Stone Left Unturned”.
“Choose Compassion” - Raising Travis has made me a more compassionate person. Over the years I am learning that the best way to teach others compassion is to model it. I hope that in sharing various Travis stories with various people that maybe some of these people have taken pause. And chose compassion.
“A Different Place” - I was not brought to the place I envisioned. I was brought to a different place. And I vow to learn all I can about this different place. Because I love Travis very much.
“Jesus Loves All the Little Children” - A story about something our family experienced at our church which led me to have a conversation with our pastor to remind him that, “Jesus Loves All the Little Children”.
“Teachable Moments” - A story about taking Travis grocery shopping and the resulting meltdown. I would like onlookers, with their looks and comments, to know that this is not a teachable moment. When a child is having a meltdown they cannot comprehend or even hear what you’re saying. Do not jump to conclusions and show some compassion for the situation.
“Meant to Be” - Due to complications from my first pregnancy I was unable to get pregnant again. This is the story of how we came to adopt Travis and why we believed that is was, “Meant to Be”.
“Writing Our Story” - Details my process in writing our story. And why I think it is important to tell.
“The Perfect Storm” - Early on I did not have any concerns with Travis. And because of his biological family history, I was watching for concerns. He seemed to be hitting his developmental milestones. Until he wasn’t. Was Travis’s diagnosis, “The Perfect Storm”? A certain combination of factors?
“My Spirited Child” - Travis began to show extreme sensitivities to the world. I happened upon the book, “How to Raise your Spirited Child”, by Mary Sheedy Kurcinka. She calls her book a “Guide for Parents Whose Child is More Intense, Sensitive, Perceptive, Persistent and Energetic”. I felt like she wrote this book especially for me and especially about Travis. This book helped me to understand what Travis may be feeling and why.
“Our Summer Project” - Travis attended the Colorado Preschool Program and then kindergarten. The school was having issues getting Travis to complete any work and I developed a summer project to teach my stubborn boy about work ethic. Read this story and see how that turned out for me.
“Labeling Our Boy” - When the school wanted to place Travis on an Individualized Education Plan (IEP) we balked. We were concerned about labeling our child. His teacher told me that Travis told her that he wanted to die. At age seven. She referred me to a counselor. He asked me which label I liked best, failure, drop-out, drug abuse, suicide, ADHD?
“It’s a Dog’s Life” - Travis participated in the HABIC (Human Animal Bonding in Colorado) program in school. An intern that was working with Travis in the classroom asked if she could use him as a subject in a study she was conducting. She wrote a paper on this study titled, “It’s a Dog’s Life: A Pilot Study Investigating the Effects of the Human-Animal Bond on a Child with Attention Deficit/Hyperactivity Disorder”.
“Sixth Sense” - Individuals with sensory processing disorders are extremely sensitive to the world. They sense things that others don’t, whether it be smell, a sound, or even another sense. This blog details a specific story about Travis and his bird that I always tell when I am describing his, “Sixth Sense”.
“Jesus Spoke to Me” - This story details an experience we had with Travis at a funeral and later at a church service. Travis describes himself as an Empath. Read this story to hear what Travis told us that Jesus said to him.
“The Girl that Gave Hugs” - There was a girl in Travis’s class that would go to him and give him a hug when he began to show signs of overstimulation. And with that hug he would sometimes be able to pull it together. Read this story to see why I believe that the girl’s mother parented the compassion out of her daughter.
“A Sticky Adventure” - When Travis was nine years old he had to be rescued from the mud in a lake by our local firefighters. This story ended up being broadcast on Denver’s Channel 2 News and detailed in our local newspaper. This was a bit of a scary story with a happy ending.
“Know Your Audience” - Our local school district hosted a speaker on proper restraint techniques. The speaker was brought in to teach us, as parents, and the school staff how to properly restrain Travis to keep him safe. The school district neglected to tell the speaker that the parents were in the audience. Read this story to find out how I reacted to some of the speaker’s comments.
“Puzzle Pieces” - We were desperate to find the missing pieces in Travis’s diagnosis puzzle. During this time we received a phone call from the father of a child that was on Travis’s T-Ball team over a year before. He felt awkward calling me. He had seen a special on Asperger’s Syndrome. He thought Travis fit the description. This is an important blog in our story. It details a big change the school district made. And my findings and thoughts after doing some research on Asperger’s Syndrome and the ADHD/Autism connection.
“A Clearer Lens” - I have saved every piece of paper, every daily point sheet, every back and forth notebook, every IEP, and every evaluation regarding Travis. I have all of his paperwork, boxes full, from his birth through today. Reviewing all of this paperwork to write this blog has refreshed my memories in greater detail. I am seeing them through, “A Clearer Lens”. And that can he hard.
“The Quiet Room” - One day I stopped by Travis’s school unexpectedly and the receptionist was not at her desk. I walked into the school unannounced and found Travis locked in a room screaming and banging his head on the wall. This story has been our most read and commented on thus far. We were not shown this room when we did a tour of this placement. Read this blog to find out how I reacted when the school staff refused to open the door.
“Long and Winding Road” - I have always described raising Travis as taking the, “Long and Winding Road”. We just didn’t know what to do and didn’t have any guidance. I am hoping that by writing this blog I am helping to straighten the path for others. We decided for ourselves what paths along the road to take. And you should too. This blog describes vision therapy and why we decided this path was not a good fit for our family.
“Blue Colored Lenses” - I was approached by an aide at Travis’s school that shared with me her personal story of her son and Irlen Syndrome. I wondered if this could be a piece of Travis’s puzzle and did some research. Read why we decided to try the “Blue Colored Lenses” with Travis and whether they were of any help to him.
“Room in a School Building” - When I found Travis locked in a closet (The Quiet Room) I pulled him from that placement. The special director told me that I had to wait to have a change of placement IEP. Nope. The district sent a staff member to work with Travis an hour per day at home. Read why I pushed the school district to find a, “Room in a School Building” for that one hour a day until they were able to find a new placement for Travis. And what I did when they were in no hurry to make that happen.
“Let Us Be the Ripples” - Travis loves the water, so I sign him up for swim lessons. I stay and watch. I cannot read a book like other parents. I have to pay attention. I watch the swim instructor teach to all of the other kids in the class, but Travis. He has handed Travis over to the junior aide. Where they play games. Read this blog to find out what I say to the instructor and what I ask him to try. This story will pull at your heart strings!
“Numbers on a Sheet” - Travis was placed in another day treatment slot at a residential setting. His teacher asked if we wanted them to send home his daily score sheet. I shared with her that it was our experience that bringing home a daily point sheet created undue anxiety for him. And we did not want to focus on, “Numbers on a Sheet”. It was not a secret to us that Travis struggled at school. At home we wanted to focus on the Travis we experienced at home. Read this blog to learn more about this setting for Travis.
“Prior Written Notice” - Our relationship with our school district had been deteriorating over the years. Read about the letter our district sent us with PRIOR WRITTEN NOTICE typed along the top. I am sure it was meant to intimidate us. The letter was written by the special education director and is said to describe an agreement made at the IEP meeting and in a phone call to us. Only we were at the IEP meeting and the details he said we agreed to had never been discussed. And we did have a phone call, but it did not cover said details. Read this blog and find out how I responded to his flagrant intimidation.
“We are the Experts” - At one of Travis’s IEP meetings the special education director said that we needed to trust him. That he is an expert in the special education field. Well if you are an expert, why haven’t you put a program in place that would meet our son’s needs? Read about the demonstration I made at our next IEP meeting showing why I considered us, as parents, such an important part of the IEP team. At this point we start the paperwork to file for due process and we hire an education attorney.
“Bag of Tricks” - Travis had an amazing special education teacher during his ESY (Extended School Year) before he started 6th grade. She reached into her, “Bag of Tricks”, to reach him. Read this blog to find out what she did to bring tears to my eyes.
“With Prejudice” - This blog will leave you with feelings of disbelief. I would not have believed it was true if I did not experience it myself. Read about the huge mistake I made.
“There Were no Winners” - We decided to move forward with due process. The hearing date was set. The hearing officer asked to meet with us and the school district in an attempt to mediate our situation. Read this blog to find out what happened during that meeting.
“Hocus Pocus” - Read this blog to find out why I called a biofeedback session, “Hocus Pocus”. And if it worked.
“Back to the Drawing Board” - We found an incredible private school for Travis to attend at the expense of the school district. We were relieved because this was an actual school as opposed to day treatment. Read why we loved this school, but at the end of the school year we found that we were, “Back to the Drawing Board”.
“From the Heart” - In this blog I write to the readers, “From the Heart”. Our family is experiencing a great loss. Tracy’s mom, Cheryl, is nearing the end of her battle with cancer. And as with everything that happens in our lives, we have to consider how this will affect Travis. As I process my own emotions, and I support my husband and other family members, I wonder if I have the strength to keep Travis above water at the same time.
“Not a Moment too Soon” - When one door closes another door opens. We were very lucky to find TJS (The Joshua School) when we did. Although they planned to work with students up to the age of twenty-one, find out why they required students to be twelve or under upon acceptance. Travis turned thirteen just a few short weeks after his acceptance into their program.
“Good Enough for Me” - Travis was evaluated for an auditory processing disorder. Read this blog to find out how they determined that he did have an auditory processing issue and what they tried to alleviate it. And why that was “Good Enough for Me”.
“This Group of People” - Read this blog to find out why I wrote Oprah a letter about, “This Group of People”, the staff and educators at TJS, and the difference they made in our lives.
“They Understand Me” - When I asked Travis why he liked TJS, one of the things he said was that, “They Understand Me”, and that makes me feel better about me. This blog highlights the internships that TJS worked on with Travis and some of his experiences while working at them.
“Teach the Way They Learn” - TJS made every effort to teach in a way that Travis could learn. One thing that I loved about TJS was their openness to directing Travis’s learning to what was going on in his personal life. When Travis wanted to become scuba certified, TJS worked with him on learning the material in the manual at school during his 1:1 time. Read about the other things TJS worked with Travis on to help him to become well-rounded.
“Tug of War” - TJS came to the hard decision after three and a half years that Travis had outgrown their program. Travis has a huge heart and can win you over when he is in a good place. I want to grab that side of him and hold on for dear life. But the mental illness side tugs him back. It’s an ongoing game of, “Tug of War”. And I made a promise that I will never let go.
“An Impossible Situation” - As parents we make mistakes. It’s a given. I have definitely made my share. How did I let the next school setting happen? Another day treatment setting. Travis went to a setting where he was receiving 1:1 staffing to a setting where he received 4:1 staffing. Read why I felt like this was, “An Impossible Situation”. And how quickly that situation fell apart.
“Lend a Helping Hand” - People often asked how did I do it all. Well, I got by with a little help from my friends. Read about how some of these friends helped me and why it’s so important to, “Lend a Helping Hand”.
“A Promise is a Promise” - This blog details the Davis Autism Approach. And why I keep trying to find a therapy that reaches Travis, because, “A Promise is a Promise”. The facilitator was incredible with Travis.
“Quitting was not an Option” - This blog details Travis’s time at Humanex Academy. It took the support of a lot of committed people to get Travis through high school. But, “Quitting was not an Option”. Read about what makes this particular setting so special and unique.
“Keep on Keeping on” - A friend told me a story about how one of her friends felt pressured by well-meaning people in her life to try a therapy for her son. Her son did not want to try it and the experience did not end well. Ultimately, we need to decide which input we will accept or ignore and do what we choose as a good fit for our families. Whether something we try is a success or a failure, we need to, “Keep on Keeping on”.
“Watching my Heart Beat Outside my Body” - I have used this saying to describe raising both of my children. This blog details my new worries as Travis becomes an adult. We want him to make his way in this world. And at the same time protect him. Because we know that this world can not only be beautiful, but also sometimes harsh.
“One Step at a Time” - This blog details Travis’s experience at the CLE (College Living Experience) three week summer program. Travis dreams of working for Microsoft one day. We talk about having to climb the rung of a ladder to get to the type of job he dreams of. But that you cannot finish if you do not start. You have to want to start. And then take, “One Step at a Time.”
“Being That Parent” - We had quite an experience acquiring SSI (Supplemental Security Income) for Travis. It seems that advocating for our child with special needs is an never ending war as we fight battle after battle. Never be afraid of, “Being That Parent”. You are your child’s one and only advocate. If you don’t fight for them, who else will?
“None of Us are Alone” - I recently joined an autism spectrum family support group on Facebook. And as I read through the posts and comments I was surprised at how many experiences the group had in common. And I am reminded that our family is not in this alone.
“Walking a Fine Line” - Tracy, Corey and I became Travis’s Co-Legal Guardians. Learn about our process and why I describe being both his parent and his legal guardian as, “Walking a Fine Line”.
“Setting Boundaries” - We worked hard as a family to help Travis obtain his driver’s license. It took several years to help him become a safe and responsible driver. Travis is the only person in his tribe that has his license. And a car. Helping others get to their doctor’s appointments or jobs makes him feel good. But some friends stopped asking and starting telling Travis that they needed a ride somewhere. And so we have had to work with him on, “Setting Boundaries”.
“Another Day in the Life” - The day I am writing about started out with a plan. But then I had to take care of this issue and that problem, schedule an appointment, write an email. And before I knew it the day was over. And I was still in my pajamas. And I didn’t accomplish any of the things that I had initially planned for my day. Because my day became a taking care of Travis “stuff” day.
“Looks Good on Paper” - Travis began his 18-21 transition program. He turned nineteen shortly after he graduated from his high school program at Humanex Academy. The program covered the Life Centered Career Education competencies. There is a list of what is to be covered in three curriculum areas; daily living skills, personal/social skills, and occupational guidance and preparation. The list. “Looks Good on Paper”. But is that what Travis actually experienced?
And just like that. Fifty two weeks, and fifty two blogs.
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.
I do not use this blog to preach. We all have our personal beliefs and I am good with that. But I wanted to share the following with you.
Three years ago I shared a post to my Facebook page. It just came up in my memories on Facebook. When I shared it three years ago, I said in my post that oftentimes I come across a post such as this just when I most need reminding. Just got to keep the faith!
I apparently needed another reminder.
The post is from Proverbs 31 Ministries. This is what their post said.
“Be comforted by this: God did not take His hands off the wheel of your life for a nanosecond. From start to finish, everything followed God’s plan for you.
This means your trials have much more meaning than you realize. Your problems have more purpose than you can imagine. Not because God merely uses bad things, but because God intends them so others might be introduced to Jesus through your example. What a high calling that is!”
Sounds like I am meant to share our story.
Have a Happy New Year!!
“Listen to your voice. No one else can hear it. Tell your story. No one else can speak it. Run after your passion. No one else can catch it. Being true to the person you were created to be is the best gift you can give yourself, your family, and the world.” - Joel Boggess