05 May Forgotten Chapter: My Name is Tait and I’m Independent

Garth Brooks tells a story about the time when he released Friends in Low Places. The album was completely done and was selling at number one, when he writes “the missing verse” of the popular song. You probably know the story if you’re a fan. The verse has this not-so-nice line that can’t be sung in certain company.

Well, I feel the same way with my latest book project. I forgot to write a chapter for the printed version of the book. It’s actually the part of my story that young people with disabilities need to know the most: how to be independent. What drives me to live on my own? Is it scary? Then there’s all the “what if” questions. What if I’m lonely? What if I spill boiling water on myself late at night? What if the fire alarm goes off when I try to bake cookies?

Alarming questions, right? And for parents and friends of someone that has a disability, all of those situations make you just want to put your loved one in a room, lock the door, and throw away the key. Well, all of those things have happened to me. Yes, they were scary, and recovering from second-degree burns wasn’t fun. But I survived. All those things that have happened to me through the years have actually helped me become a more secure, well-rounded person who can live independently and enjoy every minute of it.

Come along as I share my experiences with independent living.

I start with a day at my grandmother’s when I was about four years old. I was being cranky and didn’t want to follow my mother’s instructions. I packed up my toy truck and headed down the sidewalk on my knees. I was running away. Mom was not fair, and I had enough!

I got a block or so down the street when reality kicked in. Where was I going? Where would I sleep?  What would I eat? I turned around and went back to Granny’s. The damage was done, however. I had put big holes in my new pair of jeans! Mom was not happy, and she brings up my holey jeans to this day.

Another time, when I was a Cub Scout, my troop sold pet food for its annual fundraiser. One Saturday afternoon I decided to put my order form in the trunk of my push toy and go over to the neighbors across the street to sell my products.

We hardly had traffic living out in the country. The kids had the freedom to play wherever they wanted. Walking to friends’ houses or riding bikes up and down gravel roads was common for us. I didn’t even think about watching out for traffic when I set out and knee walked across the street to sell to the neighbors. I pushed my toy truck all the way over there, sold a bag of food, and came home. I thought nothing of it. I just wanted to make a sale.

The neighbor was impressed, but my parents weren’t surprised. I had a job to do, and they knew that I’d do what it took to accomplish it. A little dirt road wouldn’t stop me. I have had that attitude all my life, and it has served me well.

When I was a teenager, I wanted to do what teenagers did in those days: hang out at the mall. I loved the mall because it meant freedom. Once inside, I had access to hundreds of stores, the food court, and even the movies without the hassle of opening doors.

I used to beg my parents to drop me off at the mall on Saturday afternoons. We’d decide on a time or a place to meet up, and off I went into my personal playground. Music Land, DJ’s Records, and Walton Books were my favorites. Later on, when I had my own computer, the software store was high on my list. K-mart supplied my candy needs, and Hallmark was there for those Mother and Father’s Day cards.

My time at the mall taught me about money management. I learned that money does not grow on trees. Sure I could buy two albums for $20, but I could also save the $20 and have $40 and buy something bigger the next time. Mom and Dad encouraged me to save my money. Half of my allowance had to go to savings, and in a year, I could spend my savings on a big item.

One time, I was excited to show my brother the new album I’d just bought. But I had forgotten the savings rule and overspent on my purchase. Mom overheard our conversation and without looking up from her newspaper said, “I hope you remembered to put half of your money into your savings.” I looked at my brother with a guilty face. I didn’t know what to do, but I told myself that I’d put it back the next week. Whether I did or not, only history knows.

Years later, both Mom and Dad told me that my mall trips were some of the scariest hours of their lives. My safety was at the top of their concerns, and I’m sure they spent long hours praying and holding their breath until I returned at the appointed time and place. Still, they realized that I needed opportunities to learn how to be independent.

My next step of independence was taking the city bus to work and college. My world got bigger. Instead of having hundreds of stores in one building, my choices were limitless. Working a summer job downtown one time gave me experience for expanding my independence.

I spent two more years at home after graduating from high school. Because I could receive services until I was 21, my school district transported me from my country home to the bus line where I could access community resources. I could hop on public transportation to go to the community college or walk over to the public library.  I had late breakfasts with friends or run other errands before I had to get to class.

One time, during the 1992 presidential campaign, I went to Ross Perot’s local office to support his run. I then proudly held up a bumper sticker showing my support while waiting for my bus. I know, I know, I wasted my time, but even during that, I gained independence. I learned how to do an errand on the other side of town but yet still be on time for my afternoon class at the college.

My afternoon routine was a little different. The school bus didn’t return me home. I usually met Mom at the bus terminal. Sometimes I went to my grandmother’s and waited for Mom there. Mom and I would then run errands and head home for the evening to get ready for a repeat the next day.

As my twenty-first birthday approached, my parents and I faced a new challenge. I no longer qualified for services from our school district. That meant our morning routine had to change or I’d have to move to town to access services. We had the summer to figure it out.

Our answers came from the Colorado Springs Independence Center, an organization that helped people who had disabilities be independent. The independence specialist encouraged us to look into an apartment but warned us that it was nearly impossible to find accessible units.

She did, however, have a lead. A new organization was rehabilitating apartments for low-income folks, and two accessible units would be available in September. The owners would hold a lottery for the apartment. Would it be okay if my name was entered?

I  knew this was an answer to prayer. And in the middle of August, I received the phone call I was waiting for…I had won the lottery. My name had been drawn to move into a one-bedroom apartment. It was right in the center of downtown where I had spent so much time already. The part of town I enjoyed the most was going to be my full-time neighborhood! I couldn’t be happier.

My contact at the Independence Center also referred me to its home health department where I was evaluated for a home health aide to come in and help me. I qualified for help two times a day.

Someone would come in the mornings to help me shower, dress, get breakfast, and do some light housekeeping. They would return in the evening to fix dinner and help me change for bed. This was my routine for years until I decided that I’d rather have my evenings available for late appointments and activities. I could fix dinner myself and would rather have the freedom to go out in the evenings.

This lifestyle suited me for many years. I took evening classes at school, went out with friends, and could do whatever I wanted. It was awesome! I missed the evening aide every once in a while and been known to sleep in a dress shirt, but it didn’t kill me. I was making memories.

Every once in a while, though, I’d found myself in an impossible situation. Like the night I heated water to make hot chocolate. I crawled to my floor chair to enjoy my drink and watch David Letterman when my drink spilled all over my chest.

My first 911 call. The paramedics came, looked at my burns, and decided to take me to the hospital for treatment. Someone put a leash on my service dog, Nouveau, and off we went. Didn’t call my parents that night…it was just me, the dog, and the medical team.

I was at the hospital for only a few hours. I had second-degree burns on my chest.  A doctor took a look and the nurse applied the dressing. I was good to go. Someone called back the paramedics and they took me home. I went to bed and woke up the next morning to my aide knocking on my door. I explained what happened. We called the nurse at the Independent Center to report my accident and that mentioned I would need nursing care until my wounds healed. Then I called my mom.

Mom and the nurse both laughed. They each understood that accidents happen.  Mom was proud that I took care of things myself. It showed responsibility and that I was able to get help when I needed it. My burns eventually healed, and the whole thing ended up in the bowels of history. But it wouldn’t be the last time I got a visit from fire fighters.

I always try something at least one time. I even made spaghetti myself. This was probably one of the few times I wasn’t sure I’d be successful. I used a burner close to the sink to boil the noodles and was able to move the pot across the counter and pour the water out successfully. It was risky, I knew that. One wrong step…well…let’s just say my hospital visit wouldn’t be a few hours this time.

Making cookies was my next experience. I bought some Pillsbury ready to bake cookies and set out to slice them apart and laid them out on a cookie sheet. Only one problem…I had some really thin ones and really thick ones, so the baking wasn’t consistent when I turned on the oven. The next thing I knew the fire alarm was going off!

I opened the door, not sure what to do. It turned out that the apartment’s alarm system was tied into the fire department. Pretty soon a truck was in the driveway and firemen were at my door. They just shook their heads and aired out my apartment. I decided that baking cookies myself wasn’t the greatest idea. Mark that one off my list.

Nine years in my apartment zipped by. I was happy but wanted more. A bigger place would be nice. My parents began to look for an investment property that they could rent to me. I also had qualified for  Section Eight housing that would also help me manage a bigger place.

It turned out that my parents found a thousand square foot house a few blocks from my apartment. Its layout was perfect. I’d have a bedroom, bathroom,  an office, and a living space, all on one level.

We applied for a one-time city grant to help build a ramp, a roll-in shower and moved a door. We also had an automatic front door installed so I could easily get in and out with the push of a button. We were offered to make the kitchen more accessible, but we didn’t think that was necessary. Looking back, I wish we’d have done the kitchen and lowered the counters and made the sink accessible. Maybe I’d try making spaghetti again!But hindsight is 20/20.

Moving into a bigger place came at the right time. My small apartment was a great place to start living on my own, but it wasn’t a place to live in forever. I needed to spread out. Just my library alone took over half of my apartment! My service dogs deserved a yard. Mom and Dad could have dinner at my house. I hosted a group of men for Christian fellowship.

Living from a wheelchair is not easy. I always try to be careful when I’m driving my chair out in public but accidents happen when I’m tired or not at my best. Holes in the walls and scratches on the doors are noticeable. It’s not that I’m a bad driver. It’s just that this is my home. I’m not always on top of my game. Tiredness, sickness and being deep in thought has contributed to these accidents.

One time, I had my footrest raised because I was carrying a box of books to my office. I forgot that my chair was a little longer and my turn radius wasn’t as tight as it usually was. I ran right into the back wall and put a huge hole in the wall. Dad brought in a contractor friend of his, and decided to put hard plastic around the baseboards and over the hole.

Another time, after an extremely windy day, I came home and found a large branch had fallen and was leaning on my kitchen window. I called my parents right away to let them know, but I didn’t realize the extent of the damage. When I got ready for bed, I looked up at the ceiling and saw that a tree branch had poked through.

I called back my parents and said, “This is not my fault, but there’s a branch coming through my bedroom ceiling.” The joy of home ownership!

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I woke up one day and realized I had achieved my goal. I was living my life and my disability was just a part of it. I wasn’t struggling or trying to prove myself. I had experience. Sure, aides still came in and out of my home to care for me and my wheelchair is at the center of my life, but that’s just my life.

As I get older, medical issues pop up and doctor appointments seem to be a permanent fixture on my calendar. But the everyday challenges that life brings are just speed bumps for me. I don’t have the words to explain what this means to someone who was told that living on his own might not be possible.

Today, I’m just trucking along. My wife, Kelly lives with me now. It’s nice to have someone to talk to and be with. I didn’t realize how lonely I was! New challenges come up now and then, but Kelly and I tackle them together. We couldn’t be happier.

Reflection questions

• Do you think you could live on your own? Why or why not?

• What supports do you need to live on your own?