Sheldon Crocker - One Step at a Time

I recently had the great fortune of meeting an incredible man named Sheldon Crocker. I was so happy to be able to connect with him and reading his story reinforces to me that there are so many things that connect us all as we try to find our life's purpose.

Sheldon identifies as being a person with a disability that he says isn’t a disability. His belief is that a person is only as disabled as they let themselves be. He says that people with disabilities, like everyone else, must be free and empowered to make their own choices and to live with the consequences. That is how we all develop our character and personality. That is the real meaning of choice and control.

He plays pool using just one hand in the competitive Canadian Poolplayers Association against players using two hands, and he has managed to win a Top Gun Award and has also competed at the national level in Las Vegas.   

When he was a child, it was thought that he would never be able to walk. Sheldon wore braces on his legs with a bar between his feet connecting both shoes until he was about four years old. He learned to walk by placing  his back against the wall and sliding along. He knew from a very young age the message that he still feels to this day: "If we don't push ourselves, if we don't step out of our comfort zone, if we don't set goals for ourselves then can we say we are really growing, progressing and truly living?"

Sheldon has pushed himself to achieve goals that many thought were unattainable. This year, he completed the Tely 10 Mile Road Race, and also recently participated in the Terry Fox Run here in St. John's.

Sheldon is actively pursuing a career as a professional speaker and is an advocate of equal rights for all persons with disabilities. The following is from a talk that Sheldon recently gave at an ExxonMobil fundraising event for United Way. Thank you, Sheldon, for allowing me to share your powerful story here as well.

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As an only child, I grew up in a small Newfoundland community during the 1970s and '80s. Being the only one there with a physical disability, I was picked on, laughed at and bullied by the other children because I was "different". My home life wasn’t the best either. I had no supports and was forced to grow up long before I should have had to. For really no reason besides getting a few marks lower than my cousins, my mother always compared me to them. "Why can't you be more like them?" she would say. 

My entire life I felt like I had to prove myself to people, that I was just as good as others. As a kid growing up with a disability, I wasn't able to participate in activities and sports like other kids. Just about every recess time while I was in grade 8, I'd stand there telling other students to line up in front of me in single file, and take turns punching me in the chest as hard as they could to see who could knock me across the floor the furthest, to see if anyone could make me feel pain. At least this way, I felt important and that people were paying attention to me and that I didn't appear to be this weak little disabled kid.

I started drinking at 11 and doing drugs at 13 to numb the mental pain. I had no confidence and terrible self-esteem. I felt like I couldn’t trust anyone who wanted to be close to me, because I was convinced that I was stupid and worthless. I struggled with addictions, homelessness and poverty. I was physically unable to cook for myself, so ate only microwaved processed food (when I saved enough money to do so). I stayed places that had no hot water, no heat and I ate donuts off the sidewalk. 

I told myself I had to be strong and get through it on my own. I lived rough and by my wits. I slept on friends' floors. I was happy, and I was miserable. But it was an amazing journey. All the while, I managed to go to two colleges and graduate with two diplomas. I helped people see life in a different way. "If you're surviving and trying to strive ahead with a disability then why are we holding ourselves back?" people would say to me.

After 7 years of this, I moved to St. John’s. I continued with college and fortunately, the Guidance Counsellor connected me with Emmanuel House, a residential treatment program of Stella’s Circle. Through this program, my life changed dramatically. I quit drinking and using drugs 17 years ago and never looked back.

Prior to getting connected to Stella’s Circle, my life was a real struggle. I didn’t have much hope for anything; I had mostly depressing dark thoughts. I didn’t feel like I fit in anywhere, didn’t feel included, even when out in society I mostly kept to myself. I didn’t see a way out of the darkness. With the help of Stella’s Circle and the direction they provided, they helped me see that there were people who truly cared. They were the light in the darkness that I held tight, and each day was brighter and less shaded because I was gaining hope for the future.

Upon leaving Emmanuel House, it was determined that I was eligible for the Community Support Program, another program of Stella’s Circle. Workers from the Community Support Program help me shop for groceries, cook meals, and clean my apartment. They have also provided moral support, encouraging words and at times, words of wisdom. 

I am proud to say that I graduated from The Employment Program - New Beginnings offered by Stella’s Circle, in 2014, and I feel like every day is a new beginning. This program has also helped me to feel empowered and realize that I am capable of working. 

My self-esteem and self-confidence have grown significantly with the help of all of the programs at Stella’s Circle, including the Inclusion Choir. It has been one of the most therapeutic and best things I’ve ever been a part of. It has helped me step out of my comfort zone, feel less isolated and I’ve grown tremendously as a person. I just recently celebrated my anniversary of being in the Inclusion Choir. I call it my anniversary of liberation out of silence. For most of my life, I’ve been told: “Kids are to be seen not heard.” I felt like I was without a voice. The Inclusion Choir is one of, if not the most positive thing that I’ve ever been a part of in my life. In the past, I tried to keep my distance from the events and programs of Stella’s Circle because of the social stigma I felt attached to it. It’s so awesome to see each year how the social stigma around mental health becomes less and less with the great work of this organization and others like it. 

With regards to my physical environment, I am grateful to have had a roof over my head for the past 19 years. I don’t have to worry about sleeping on park benches in January anymore. Working with an occupational therapist, I’ve had my bathroom adapted so I can be independent with my personal care. I have a hospital bed that is comfortable and adjustable that I can get in and out of. I have modifications done so I can reach my clothes hanging in the closet. I am able to access my computer through voice command and the setup is ergonomic. These changes at home have helped raise my confidence to look for work and access the community. The older I get, the more I feel these services will be useful in helping me maintain an adequate quality of life.

I believe that understanding my personal experiences and the support that has been necessary to help me live in the community is valuable. It will help develop an understanding of what support is needed to continue to help people, like myself, age successfully in the community. No person anywhere, especially here in this country, should live in the shadows or suffer alone, because they can’t afford treatment. I've learned through my connection with Stella’s Circle that fears limit us and our vision.

This may seem really obvious to a lot of you, but it wasn’t for me, so I’m going to say it anyway: There is no reason to feel embarrassed when reaching out to a professional for help. There is no reason to be ashamed and most importantly, no need to be afraid. People do not need to suffer. There is nothing noble in suffering, and there is nothing shameful or weak in asking for help. I am thankful for the help I received. If people hadn’t had the strength to encourage me to seek professional help, I don’t know how much longer I would have been able to even exist, to say nothing of truly living. 

Believing that it takes the whole community working together to change social conditions is essential. There is hope for everyone, work hard, believe strongly, focus, be aware of your thoughts and we can all change our lives if we want to bad enough. The journey of life is taken one step at a time. 

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One of the primary reasons I speak out about my mental illness, is so that I can make the difference in someone’s life that I wish had been made in mine when I was young, because not only did I have no idea what Depression even was until I was in my twenties, once I was pretty sure that I had it, I suffered with it for another ten years because I was ashamed, I was embarrassed, and I was afraid.

Those of us who live with mental illness need to talk about it, because our friends and neighbours know us and trust us. We need to share our experiences so someone who is suffering the way I was won’t feel weird or broken or ashamed or afraid to seek treatment. So that parents don’t feel like they have failed or somehow screwed up when they see symptoms in their kids.

People tell me that I’m brave for speaking out the way I do, and while I appreciate that, I don’t necessarily agree. Firefighters are brave. Single parents who work multiple jobs to take care of their kids are brave. People who reach out to get help for their mental illness are brave. I’m not brave. I’m just a man who wants to share his story with the world, who hopes to speak out about mental health so much that one day, it will be wholly unremarkable to stand up and say the words: "My name is __ __. I've lived with Chronic Depression, and I am not ashamed."

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Sheldon has had the opportunity to share his powerful message at several local events, and he welcomes requests from businesses and organizations looking to hire an inspirational speaker. Sheldon can be reached at coppertop25@yahoo.com

No Excuses. No Limits.

You guys are going to be so tired of hearing me talk about Luca 'LazyLegs' Patuelli, but I just can't help myself! If you saw my last post, you know that Luca is here touring the province this week, and I couldn't be more exited! After hearing him speak on the panel at MUN about 'Reframing disABILITY' a couple of days ago, it was incredible to see him perform and present his "No Excuses. No Limits." program at City Hall here in St. John's.

Throughout his career, Luca has been able to share his message with over a million audience members world-wide. Offering a charismatic, interactive, and dynamic presentation on his own successes and failures, Luca spoke personally about how perseverance has gotten him to where he is today.

Luca talked a lot about his dance career, and demonstrated how he uses his upper body strength to create a unique dance style that has garnered him worldwide recognition. Luca is the creator and current manager of the ILL-Abilities Crew, and he co-founded Project RAD, which was Canada's first inclusive urban dance program offering people of all ages and all abilities the possibility to participate in accessible dance studios.

Luca explained that in Hip Hop, the words 'bad' and 'sick' mean good, and so he uses the term 'ill' in ILL-Abilities to mean really good. It represents an adaptation of power, strength, and creativity. Believing in yourself to accomplish anything you set your mind to. Creating advantages from disadvantages, and exploiting your capabilities - to live life to the fullest potential.

Thank you to Alick Tsui for capturing these images! 

Luca's performance was impressive. His presentation was remarkable, and his message was important: "No Excuses. No Limits." I've been saying it all week, and I'm not done talking about him yet! Luca will be performing again to a sold-out crowd at Easter Seals House on Saturday, followed by a dance workshop and social. I am excited to see how Brennen responds to him. I know he will love the music and the hip hop beats, but I am not sure if he will be up for showing off his sick moves on the dance floor. Maybe we will practice a little at home before the weekend. I'm always up for a pajama dance party!

"Dance challenges us to surpass our limitations by discovering strength within. So, live your life to the fullest and dance beautifully!" 

- Luca "LazyLegz" Patuelli

Alison - Living a Life Without Limits

You might remember our little friend, Ava, who I have written about several times now. Ava was the Janeway Miracle Child last year, after taking her first steps and unexpectedly learning to walk right here with Andrew and I. I say "unexpectedly" because Ava was born with a condition that greatly limits her mobility. We were not sure she would ever be able to walk independently (actually, I hate to admit it, but we were pretty sure that she wouldn't), but Ava was determined and incredibly motivated and she proved us all wrong! There is no stopping her now!

These are the stories I love to share - the stories of individuals who don't let their disabilities hold them back, who recognize their own potential, and prove that on the other side of fear is freedom!

I am excited to introduce you to Alison - an incredible young woman who refuses to allow her physical condition to limit her lifestyle. She has so much energy and enthusiasm and confidence in her own abilities. Despite having the same condition as Ava, Alison has recently realized her dream of being able to drive her own vehicle independently. She has pushed the boundaries, not allowing herself to be limited by other people's perceptions or ideas of what she can or cannot do.

I had the opportunity to chat with Alison at an event that we both attended recently, and she was excited to show me her new vehicle. She was also happy for me to share her experience here on my blog because "it demonstrates truly how many opportunities exist for people who may need some support or help being creative and thinking outside the box."

I will let Alison explain:

"My disability is Arthrogryposis Multiplex Congenita, which means that essentially my joints don't function the way I'd like them to. It hasn't prevented me from doing anything, though. There are some minor things that I'll always need help with, but I have traveled to eight countries, earned two degrees, and have had countless life experiences many "able-bodied" persons will never have! 

But driving didn't come as early for me as it did for my peers. I had always envisioned myself driving. It's never been a 'wonder' or a 'hope'. I knew I could do it, but I just did not know how it would be accomplished. Unfortunately, the options and possibilities are limited here on our island, so I did not receive a wealth of support or encouragement. While this was disheartening, I was still sure there was an opportunity out there. I was referred to Constance-Lethbridge, a rehabilitation centre in Montreal, where Occupational Therapist Dana Benoit and her team put my plans into action through their Driving Evaluation and Vehicle Adaptation Program.

Within roughly an hour of meeting Dana, she had me driving two different types of vehicles independently. After merely two days, I had a vehicle fully designed for me to drive! The garage started their work, and two months later my accessible CRV was in my driveway in St. John's! The car is one-of-a-kind, and can be operated completely hands-free. My hands are most affected by my condition, so while one of the vehicles we tried did involve me steering a horizontal wheel, we decided on foot-steering. This way, the original steering wheel is intact and anyone else can get in my car and drive it 'normally'. 

My gear shifts are now buttons on the door panel which I hit with my elbow. The indicators are on my head rest. There are voice scan buttons on my arm rest, a horn by my knee, and a simple stick for things I can't reach easily, like the radio controls. Thanks to Dana, Jean, and Stephane in Quebec, my dream became a reality. There are not enough words to convey my appreciation to them. I am so much more independent now. I am even accepting a position in Gander to pursue my career in psychology and I can easily commute back and fourth as I wish!

Alison, I am so very happy for you! I could hardly contain my excitement when you were showing me how you use your vehicle, just knowing how this opens up your world and creates so many more opportunities for you to have a full and fabulous life! There really is no limit to what you can do!

I am the first to admit that I wasn't always so optimistic. Before Brennen was born, my experience with persons with disabilities was very limited - like, I didn't even know anyone who used a wheelchair, or who had limb-differences, or any sort of physical limitation. I am sure that I had some skewed belief that they were somehow less-capable, or unable to do certain things, but the truth is that we are all capable of so much more than we realize. Sometimes you just need someone to believe in you and to give you that chance.

My perceptions have changed quite drastically in the past twelve years. I no longer view disability as an inferior human experience (I feel terrible even writing that!!). I hope that others are also able to replace their natural tendency of judgement with kindness and love, to look beyond differences and see people for who they are inside - for what they have to offer, rather than what they are lacking or how they are different.

-Julie

Miracles Can Happen

We love to watch the Janeway Telethon as a family. We watch to see the familiar faces of people we know - the doctors and nurses, surgeons and therapists. And we watch to see the touching stories of hope and healing, and the introductions to the Janeway "Miracle Kids".

Ava Mooney was one of this year's Janeway Miracle Kids. A while back, I shared Ava's story HERE.

Ava was born with Arthrogryposis Multiplex Congenita, a condition in which the joints become permanently fixed in a bent or straightened position. For Ava, this condition is quite severe. The joints of her arms, hands, elbows, wrists, legs, knees and ankles are some of the areas that have been affected, allowing her very limited mobility.

When we first met Ava, we didn't know anyone else with her condition, so we really didn't know what to expect from her, but it became clear very early on that she was a very determined little girl. She found ways to get around, and to do the things that she wanted to do. After months and months of working with Ava, and supporting her through surgeries and therapies, she took her first independent steps with Andrew and I. We were completely amazed and so excited for her! I was happy to have captured some of her first steps on video, as you can really see how happy she is, and how proud we all are!

Here is Ava's miracle story:

Working with children with special needs is both challenging and rewarding, and it is a learning experience for us each and every day. It is a tremendously rewarding role that we have as educators and child care providers, and we don’t take that for granted. We have had the incredible opportunity to witness some really special moments with our children, and we are honoured to be a part of their success stories.

We have an amazing little group of children here at Little Tulips, and we are thankful for the opportunity to work with each and every one of them!

It is exciting to think of what the future might hold for Ava. There is nothing stopping her now!

Tulip Tales: Ava

I am super excited to share this Tulip Tale with you guys! I just love this series. I can't even tell you how much it means to me to be able to connect with families of children with special needs. While each story is heartwarming and special in its own way, this one in particular is very dear to my heart. Ava is one of the children in my care at Little Tulips. We just love having her with us every day! She is an absolute pleasure to work with, and it is incredible to see how far she has come.

Ava's Mom, Selina shares her story.

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Ava was born with a rare condition called Arthrogryposis Multiplex Congenita (AMC). Arthrogryposis is described as congenital (from birth) joint contractures in two or more areas of the body. A contracture is a condition in which a joint becomes permanently fixed in a bent or straightened position, completely or partially restricting the movement of the affected joint.

I found out about this condition via ultrasound when I was 18 weeks pregnant with Ava. Her Dad and I were very nervous and were left with so many unanswered questions. We had never heard about this condition before. The doctor explained it to us, but of course when we went home we found ourselves searching the internet looking for more answers. The articles we found were terrifying and we were faced with some really difficult decisions. In the end, having Ava just made sense to us. She was born here at the Health Sciences Center in St. John's at 39 weeks gestation. I had to have a c-section, because of the way her limbs were positioned.

There are different types of Arthrogryposis. Ava has what is called Amyoplasia, which is characterized by severe joint contractures and muscle weakness. This condition affects Ava's ability to use her arms and legs. Children with Amyoplasia are believed to have normal to above normal intelligence.

The exact causes of Arthrogryposis are not fully understood. Any factor that restricts fetal movement during development can result in congenital contractures. Motion is essential for the proper development of joints. A lack of fetal movement allows for excess connective tissue to form around the joints, which can result in the joint becoming fixed and/or limiting the movement of a joint. In theory, any factor that diminishes or restricts fetal movement can cause congenital contractures. Amyoplasia, the most common form of AMC, occurs randomly and is not genetic. I was told that sometimes it "just happens" to babies during fetal development.

Ava was born with her legs bent about ten degrees the wrong way, and she is unable to move her arms or hands due to the lack of muscle. Fortunately, with the help of physiotherapy, occupational therapy, and orthopedic surgery, Ava has been able to overcome some pretty big obstacles.

She has had four surgeries to date. Her first was to insert a port-a-cath that would assist her in all of her upcoming surgeries. Ava had previously gone in to have surgery on her feet but they couldn't get IV access because they couldn't find a vein. That is when it was decided that a port would best suit her medical needs.

Her second surgery was to cut the tendons in her ankles on both feet. She had to wear casts for several months, and then braces (AFOs) during the day and at night to help get her feet flat on the ground. This surgery was a success for one foot, but the other required more extensive surgery.

Her most recent procedure was this past January. She had surgery on her legs to help create a bend in her knees. She went from having almost no bend at all, to now almost a 60 degree bend. She wears braces on her legs to stretch the muscles and help keep the range of motion.

The main goal of treatment for Arthrogryposis is to help a child's joints move as normally as possible. Ava attends regular therapy sessions at the Janeway, and is followed closely by several doctors at the Shriner's Hospital in Montreal, where they specialize in her condition. We are very grateful for all of the medical help that we have received in both provinces. Ava continues to amaze us every day. She is our little trooper!

Ava is a very strong-willed little girl. She is a smart, energetic, and playful two (almost three) year old! Ava has figured out how to use her hands to color, paint, draw and play games on the iPad. She uses a walker to get around, and to say she likes to walk is an understatement. Her first words in the morning are a very animated, "Mom, I'm walking!"

Ava continues to grow and learn new things every day and she is surrounded by family and friends who can't wait to see what the future holds for her. We know she will succeed in anything she puts her mind to. I am thankful for every day with my little blessing. I would truly be lost without her. "The only disability in life is a bad attitude!" We try and keep that quote in mind while raising our daughter. We wouldn't change anything about Ava. She is perfect and has made us the parents we are today. Our minds opened up to a whole new world when she was born.

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This year, June 30th, 2015 will be recognized as Arthrogryposis Awareness Day across the province of Newfoundland and Labrador. While we should consistently fight to raise awareness for conditions no matter the time of year, having a designated awareness day has the potential to make that fight more impactful. I am so pleased to say that this year we will be wearing blue in support of Ava and all other families who are affected by Arthrogryposis. Please join us and wear blue for AMC day!

 

  Ava and her family with Deputy Premier and Minister of Health and Community Services, Steve Kent, signing the proclamation recognizing June 30th as Arthrogryposis Awareness Day in Newfoundland and Labrador.
 http://www.releases.gov.nl.ca/releases/2015/health/0630n03.aspx