Terry Scott Cohen's family story shares their experience, joys and grief

tour special needs family

Disabled & Challenged: Reach For Your Dreams! - the inspiring book by author Terry Scott Cohen

I am Terry Scott Cohen and I have written a book dedicated to kids and young adults who are having a hard time dealing with their disabilities. I have had to accept my disease and go on and live my life and strive to achieve my dreams.

I have a disease called “myotonic muscular dystrophy.” My disease has no known treatment or cure. My disease has put me on the course of a life journey.

I did not ask for my disability. I am sure you did not ask for your disability, either. Still, if you have a “chronic” disability, it is not going to go away. And it could get worse for some of you. It will for me.

There are a lot of disabilities that young people can have. Maybe you have a brain injury or some other injury caused by an accident. Maybe you have a disease. You could also have a mental handicap, like a learning disability or speech problem.

If you think you are alone, you’re wrong. According to the most recent U.S. census, almost 7 % of the population of children living at home has a disability. We are a big part of the United States!

Because of my disability, I have met many other young people with various disabilities. I have seen them struggle like me—up close. I have even seen some of my best friends have seizures. I have friends who have been crippled, including one who was perfectly healthy and a popular guy in high school before a tragic auto accident changed his life. I could go on. Life is not fair, and it would be very easy for us to just give up and to say, “It is not my fault.” But life does not work that way. Bad things do happen to good people all the time.

As surely as you cannot erase your problems, you also cannot avoid or ignore them, because that would make it harder for you later in your life. You basically have no choice but to find ways to help yourself. Otherwise, your disability is going to catch up to you, and things could get worse.

There is a better way to live your life. We all have our problems and need to learn what to do about them. Here are some of the many things that I cover in my book:

· You need to find out all you can about your medical problem from your doctors and healthcare therapists, and sometimes doctor talk can be really confusing. Getting your doctors to stop talking to you over your head and scaring you are a big challenge. Your disabilities are hard enough without doctors confusing you!

· Doctors can only do so much to help you. Even if you understand your limitations, you still need to figure out different ways to help yourself and use your capabilities. It is too easy to just say “I cannot do this.” You need to change your thinking and say, “I am having trouble doing this.” Don’t be afraid to try over and over again, even though it is a struggle. And when the going gets tough, don’t be afraid to ask for help.

Terry today, age 31

Terry Scott CohenThere are a lot of challenges for young people with disabilities—things like learning how to live your life and enjoy it, and getting along with other people who don’t have disabilities as well as those who do! Illness will always be a challenge for people with certain disabilities. Even little problems, such as a cold, can be life threatening if not taken seriously.

· Life will present you with many practical problems, like finding and keeping a job. Sometimes you are likely to get down on yourself, and you may even hate yourself because of your disability. This has happened to me. I even had serious thoughts of suicide at a very trying time in my life. There is a lot to think about, but I hope you will realize as you read my book that although we all face some very tough times now and then, there are ways we can get through them.

I know that these challenges must sound almost impossible for some of you. But I have found that what feels so lonely, difficult, or scary at certain times in my life is just that—a time in my life, and a problem situation. It will pass. You need to recognize that life is like that.

I have learned from these many challenges and more that my disability is not in control of me. I am in control of me, and it is up to me to make my life better.

Personal note from Terry to you: We all need our dreams and our hope for a better life. My greatest wish for you is that you will achieve some of your fondest dreams in your lifetime, and that my book offers you the inspiration to go on and do your very best. You owe this to yourself and your loved ones. We are all on this difficult journey together.

Reach for your dreams

People with disabilities think a lot about what they cannot do. You would do better to change your thinking and focus on what you can do. You might surprise yourself, and maybe even amaze yourself. When I visited a gold mine in Alaska (my favorite state to visit), I had to walk through an obstacle course. I did not know that it was going to be so challenging, and I had never faced anything like that before in my life. When I decided I would try to walk around broken stairs, slanted walkways, and holes in the floor…well, I never thought there would be so many of them.

When I got halfway up the gold mine, it was obvious that it was only getting more difficult. I suppose I could have turned around, but I did not want to. I wanted to see the gold mine—it was an adventure I did not want to miss. It was a once-in-lifetime experience. This is a good example of doing more that I would have expected of myself. Sometimes people with disabilities face trying experiences that they don’t expect. When this happens, you have a hard choice to make—tackle the tough situation or back down. You have to go one way or the other. My advice is the same advice that a very good teacher gave me: just try it and find out what you can do. Don’t start thinking that you cannot tackle a challenge, because if you do, fear can stop you cold.

Of course, if you are starting something entirely new, you want to stop and think about it before you attempt it, because you certainly need to consider your limitations. Otherwise, you might get hurt or very frustrated trying. However, when you do decide to try to conquer something, give it your best shot! I tried to climb a gold mine, and I knew that I could at least manage some of the steps that were not as broken. However, much to my surprise, the steps got worse as I began climbing them. This is what I mean by facing a hard choice. I knew what I could do, but I did not know what I couldn’t do. I had never climbed a gold mine before. When this happens to you, not only should you try, but you also shouldn’t let fear stop you. It felt great when I successfully climbed the gold mine. What I mean is that I felt great about myself.

The gold mine experience was not the scariest experience in my life. Actually, my first and biggest encounter with personal fear was leaving my family when I was twenty-one years old and going some 1500 miles away to start a special program for young adults with disabilities (both physical and developmental) to learn how to live independently. I very much wanted to learn how to take care of myself. At that time in my life, I felt lost and alone. I could not hold a job for very long, and I was hanging around with the wrong crowd of people. Some of my so-called friends actually took advantage of my good nature and went on a joy ride with my car.

Terry Scott CohenWhen I started this program, I remember sitting at a table with tears flowing from my eyes. I had no idea what would happen to me. I thought my parents would just celebrate when they dropped me off and went home because I was in such a funk. I just felt awful and I also had doubts about myself. I did not know what was going to happen to me at this program. I was kind of stuck.
What could I do about it? People with disabilities often feel this way—helpless, confused, frustrated, and mostly scared. Being afraid of the unknown can be overwhelming. However, this program became a turning point in my life and left me facing an entirely new path for my life.

I now realize that sometimes the bigger the fear, the greater the opportunity for achievement. In my case, this program changed my whole outlook on life, and set me on an entirely different course to live independently of my parents which I am following to this day.

Achievement is not always about you choosing a new course for your life or a new medical treatment or a new job. And I can go on and on about scary experiences dealing with our disabilities. Sometimes, other people in your life such as your parents or doctors choose for you and you don’t really feel you have a choice. But you can not turn back, either! This makes it even more frightening, especially when other people who you know really care a lot about you try to convince you that the payoffs are worth it. You still have to decide for yourself how much you are willing to go out on a limb to reach for the stars. Everyone who has a disability, in my opinion, needs to give himself this chance at least once in a lifetime, if not more than once. You don’t want to miss out on a life-changing experience.

I could have fallen flat on my face at this life skills program, and my ego would have been bruised. But I would have recovered. Instead, I decided to make a go of it. I ended up spending six years there. I made friends for a lifetime, learned to live independently, worked with some great counselors who made me feel much better about myself, and I am now living in my own place and doing my own thing back in Florida. Wow…what an achievement for me!

Besides changing the way they think about their own achievements, people with disabilities also have to step back and honestly ask themselves about the people who are there for them. Sometimes, you might have certain people really cheering you on to do your best. But only you know what you can do. I think it is sad that many people who do not know individuals with disabilities just assume they cannot accomplish very much, and that they need extra help. When this happens, it makes me feel helpless, and it probably makes you feel the same way. You may even resent it.

Terry Dreamt of Writing His Book - Disabled & Challenged: Reach For Your Dreams! - and he did it!

I have experienced people at work who say I am just a part-time worker, and they only expect me to do small jobs. They don’t know that I can do much more, and that makes me angry. Remember, I said that I am a person with a disability, not a disabled person, but other people often misread my limitations and make them greater than they are. I have asked to be part of some bigger projects.

Once I did get to help put some new formats on carts, and sometimes the human resources people ask me to help with the filing. You can see my point—all people have their biases, but the more people get to know you and the things you very much want to do to contribute and make a difference, the better the chances are for you to be tapped for all your capabilities. It just depends and you have to roll with the punches.

A personal message from Terry to you….When I wrote about “Achievement” it occurred to me that many young people with disabilities probably can do much more than they think and much more than others expect of them. It just is the nature of the beast. Our limitations are not what we are all about. We all have our strengths, and we all have to reach for our challenges. I hope you will reach high, and when things get scary just ask yourself what you really want to do to succeed. It really feels great when you accomplish something that you did not expect you could do. You might even surprise yourself!

Big Dreams

What is a dream? It is a fond wish that you hope someday may come true. My dad was twelve years old when he had a dream about living in a big, beautiful home overlooking the water. He told his dad (my grandpa) about his dream, and my grandpa told him that he would have to earn a lot of money or win the lottery to afford such a beautiful home on the beach. My dad told me that he was only a kid, and he had no idea how he would go about making a lot of money, or even how to get started to realize his dream.

A dream is something you wish very hard will happen. We all have dreams, and people with disabilities need their dreams even more than other people. Why? If you don’t have a dream, then you cannot imagine your future. By the way, my dad’s dream actually came true. But it took a lot of hard work, many years of schooling, and many more years of working and doing his job before he could afford his dream home for our family.

My point is: don’t give up on your dreams, even if you don’t know how they could ever come true. My parents taught me that you never know what the future holds. Someday there will be a cure for my disease—I know that and I believe that. What I don’t know is when science will have a major breakthrough for my disability. But that does not stop me from dreaming that the day will come. There is always hope, and you have to believe to have a dream.
Terry Scott Cohen
Terry Up Close With Animals.. one of his Big Dreams!

Imagine living without your disability. What dream would you want to come true? I would love to work around a lot of animals and not worry about falling; it would be wonderful to be able to freely walk around forests, rivers, and mountains where wildlife abounds. In fact, I have visited Alaska twice with my dad, and those great trips led me to dream of being a forest ranger for wildlife and protecting animals that are threatened or becoming extinct. What a great dream for me! I will never give up on this dream. I am now planning another trip to Alaska with my dad. We will go on a jeep tour in Denali Park to see wildlife up close! If I cannot walk in the forest, I will go by jeep!

When the day comes when I am cured, you can bet that I will try my best to get a job with wildlife. Dreams are fun to have, and they can happen when you are asleep and when you are awake. In other words, a dream is a way to leave the present and just imagine your future.

A dream is not something you know how to make happen—that is why it is a dream. But dreams can surprise you. They get you to think of yourself as something more than you are today, and they are fun and can lift your spirits.

I know you must be saying to yourself that the dreams I am talking about are just fantasies, or make-believe. For now, you might be right, but if you never allow yourself to have these dreams, you are robbing yourself of a way to challenge yourself for a brighter future. Everyone needs to keep the fire alive.

Even people who don’t have disabilities have what sometimes seem like impossible dreams. For example, Thomas Edison dreamt that one day he would light up a city, and he ended up inventing the light bulb that actually made this happen.

I am not suggesting that you just go right out and try to conquer the world and ignore your limitations. You can get hurt if you confuse your dream with the hard reality of living. For example, if you dream you can fly, it won’t happen with or without a disability! We all have our limitations. All I am saying is, don’t let your limitations stop you from imagining a world where you might fit in and achieve your dreams.

Maybe my dreams won’t happen quite the way I would like them to happen, but there are lots of ways for me to enjoy wildlife now. Just watching a great program on TV about whales and dolphins give me a lift! In fact, the Discovery Channel has a lot of films about animals and their habitats. Even if the day comes when I cannot walk or I am sick, I will watch Discovery Channel, and will continue to keep my dream alive.

When you have dreams, you can start to taste parts of those dreams. For example, I once went deep-sea fishing with my dad off the coast of Mexico, and I hooked into a large sailfish. I could not bring in the sailfish, though, and I needed help from the ship’s mate, because the reel was not suitable for my weak fingers and arms. I could have used an electric fishing reel that day! Still, it was a thrill of a lifetime, and I will never forget it because I had a chance to taste another dream I have…to own a fully accessible boat and take it for cruises wherever I want to go.

A dream is life changing, and not something that just happens once. It is kind of like a path in life—a chance to do things that allow you to taste your dream often and in more than one way. In other words, if a dream is worthwhile, you will come back to it in your mind for many years. We can all imagine things. It is the power of imagination that makes it possible for us to dream in the first place. Enjoy your dreams, and keep on thinking about ways to improve your life.

A personal message from Terry to you... I did not know this at the time I wrote about my dreams, but there already exists an alternative to a wheelchair. It is called the “TracAbout” and can ride through sand, mud, and climb hills as well! In my book, I write about amazing advances in technology. Even if I am not cured in my lifetime, I may get to ride in the forest after all and enjoy wildlife! So please keep your dreams alive whatever they may be. We all need our dreams as we journey though our lives. And we will achieve many of our dreams!

Disabled & Challenged: Reach For Your Dreams!

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