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A Miracle of Persistence and Courage

We never know when miracles will occur, but in our hearts, we hope that they will. We know that assumptions and expectations about the special needs population can fuel limited aspirations and lead to inhibiting anxiety that can only enhance the special needs child’s sense of being depressingly different. We exist in part to show these young men, women, and their families that many of the assumptions about their diagnoses are false. When we can prove that these assumptions are false, that’s when miracles happen.

Brandon’s development was problematic from the start. By the age of six months, he was extremely underweight and had jaundice. Developmentally, he was very behind and unable to sit up, roll over, stand, or make eye contact. At the age of 5, we found out Brandon had strabismus, a vision condition that required him to undergo five surgeries to fix his eyesight. A few years later, we were finally able to potty-train him and he began talking in sentences.

In 2010, they discovered that Brandon had a genetic mutation which was causing these medical issues, including his abnormal gait. After a few years of very abnormal walking, a doctor took X-rays and discovered that he had scoliosis and that his right hip was misplaced. We were advised to have Brandon undergo surgery to correct his hip and were told he would be walking normally again within six months.

After the six months, Brandon still wasn’t walking. He became severely depressed and anxious. The physical therapy he went through made him so sick with fear that he was hospitalized many times. As a result, he remained in his wheelchair and would not allow anyone to take him out of it.

Brandon had been unable to walk in the eight years since the hip surgery. We were at a point where they needed to buy him a new wheelchair; however, when approached about the need for a new wheelchair, Brandon expressed that he didn’t want any more wheelchairs. He wanted to walk and he wanted to do it on his own. The problem was that we didn’t know how to help him until we saw an advertisement for a company called Special Strong.

On June 4, 2019, we responded to an offer for a free, 7-day gym pass at Special Strong services for our then 17-year-old son, Brandon. Special Strong offers gym training for special needs individuals. Their goal is to help people with Down syndrome, Autism, Cerebral Palsy, Rare Genetic Conditions and many more conditions lose weight, improve stamina and boost socialization through fitness and nutrition training, private training, group classes, and certification courses. When we heard about Special Strong and their special needs gym, we had a glimmer of hope that maybe Brandon might walk again.

Hope. It often leads to small decisions that have major consequences. Instead of buying the new wheelchair, we decided instead to invest in a personal trainer, Daniel, who worked out of McKinney, TX.

On July 15th, 2019, Brandon had a thorough baseline evaluation and his first training session with Special Strong. They saw his potential and shared with Brandon that they knew there would be a day when he would walk again. Brandon smiled at the thought. He didn’t resist the idea at all but he told them he was scared of falling and getting hurt. He also confided in his trainer about his other struggles: how people looked at him differently and how he didn’t feel accepted by some of his peers. He also stated that he believed he didn’t have a girlfriend because of his inability to walk.
Importantly, Brandon seemed to trust his trainer enough to confide in him and share his fears. His journey had begun.

During the next session, Brandon and Daniel did an actual workout. Brandon was able to stand up and get out of the wheelchair and hold on to Daniel’s arm, which allowed them to do corrective exercises to work on the muscles that had atrophied from not being used in eight years. As he worked with Brandon, Daniel continued to see his potential and he called it out as often as he could. At the same time, he also saw the fear inside of Brandon and how it was preventing him from progressing.
Whenever Daniel told him that they were going to try a new exercise, Brandon would begin to physically shake and say, “I can’t do it Daniel! I’m scared!” Even though Brandon was scared, he was always receptive to Daniel’s coaching. He understood his fear, but he didn’t run away from it. That was crucial and was the key to Brandon’s ultimate progress. You might not look at him and think he was brave, but he was as courageous as anyone who has ever faced a ferocious enemy or even worse, their own demons.

Daniel knew it was time to progress Brandon to the next phase of training, which was having him use forearm crutches. The goal was to stop bringing the wheelchair to the gym and to eventually transition to the forearm crutches. Brandon had never used forearm crutches, but he quickly learned how to use them.

Outside of the gym, Brandon continued to alternate between his wheelchair, walker, and forearm crutches. Anyone who works with helping people beyond their perceived limitations can relate to this. When any of us do something that is uncomfortable but beneficial, our tendency is to find shortcuts and the least path of resistance, even if that means going back to old habits. It’s a constant fight to choose to remain uncomfortable, but we know that we become better for it. It’s the ultimate challenge.
On July 30th, Brandon had his fifth training session. During this session, Daniel took Brandon into the group room to attempt to walk without forearm crutches. Brandon began to tear up stating out of fear that he could not do it. After a lot of coaching and encouragement, Brandon took some of his first steps in eight years! This was a huge victory for Brandon!

He overcame his greatest fear of walking independently and it gave him an incredible amount of confidence. Through training sessions, Daniel continued to strengthen Brandon’s legs and core, especially his lower back. He would have small moments of victory followed by many moments of defeat as the fear repossessed his mind, but he had the most important attribute: he would never give up.

On August 21st, Brandon held on to Daniel’s arm as he walked outside. In anticipation that something great was about to happen, another miracle, Daniel gave Brandon a pep talk, encouraged him, and got the video rolling — and that’s when Brandon truly conquered his fears for the first time his life. He walked independently for the first time and kept repeating aloud, “I did it! I did it!”


After that, everything changed for Brandon and his family. He hadn’t just learned to walk. He had conquered his fears. He had conquered the assumptions and self-limiting thoughts.

The video was shared widely internationally and Brandon was so encouraged by enthusiasm. He started going to school without his wheelchair or walker and people started coming up to him to in school to tell him how proud they were and that they saw his video. For the first time in his life, Brandon felt like he had a purpose and that he could make a difference in the lives of others.

Brandon continues to train with his trainer at Special Strong twice a week. He can now walk at 4.0 speed on the treadmill, close to a light jog. The only thing preventing him from running is his foot drag, which they are currently addressing through their training sessions. Now, I am confident that one day Brandon will walk, run, and even sprint! And so is he.

Daniel Stein
2020

 

 

The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.

 

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