I briefly met Shaun Evans and his son Shamus after the Adirondacks Ragnar last year and was immediately struck by their story and abilities, which are detailed in the interview below. Shamus is currently pulling his dad through countless miles of training as they prepare to run across the country this summer, in part to raise money for Ainsely’s Angels and promote the value of inclusion. I have tremendous respect for the abilities and spirit of Shamus and Shaun and I hope you find the same inspiration and perspective I’ve gained from their efforts. Look for them on the roads this summer and consider contributing to the work of Ainsley’s Angels.
This summer you’ll be running across the country to promote the organization Ainsley’s Angels and the ideas of “inclusion”. I know your son has Cerebral Palsy and was the initiator of this run. Could you give me some background on Ainsley’s Angels, how you began working with them, and what your goals are for the run?
We were introduced to Ainsley’s Angels when Shamus outgrew his jogging stroller in 2013. I had undergone bilateral hip arthroscopic surgery in 2012 (as well as a sports hernia repair and vasectomy) so Shamus and I had not run together in a long time. When I put him in his old stroller it quickly became evident we could no longer safely run together with that device. However, we did not want to stop running together. He had been running with me his entire life.
I called Dick Hoyt (of Team Hoyt fame). Having been in several marathons with Dick, I knew that he had chairs large enough to accommodate his adult son. He picked up the phone and was happy to speak with me about options. He had said that the chairs he uses to push his son Rick are custom made and very expensive. He said another option would be to “contact this guy in Virginia Beach who goes by the name ‘Rooster'”. He explained that Rooster was the president of Ainsley’s Angels and he helped families to be able to obtain equipment so their children could more fully participate in life. I had never heard of such a group and was thrilled to hear that there were other people out there doing what Shamus and I were doing…rolling with the wind.
I e-mailed Rooster not knowing when I might hear back from him…hoping that I would not have to wait too long so that Shay and I could get rolling again. Less than 5 Minutes after sending the e-mail I had a response outlining a few options on how we could get Shamus a new chair. One of the options was to buy the chair for around $1000, another was to fundraise $800 for Ainsley’s Angels. Once the $800 goal was met, a new running chariot would be shipped to us.
Rooster helped to set up an online fundraising page for us. My wife, Nichole, and I launched the page Saturday morning as we got ready to take Shamus to his adaptive baseball league. In less than 6 hours family, friends and strangers had donated over $1300 for Shamus’ new wheels. A few days later we had Shamus’ chariot and were rolling again.
I then learned a lot more about Ainsley’s Angels and found that they are a rider athlete program that pairs able bodied runners with individuals with limitations that impair their ability to run on their own. I found that they had ambassadors across the USA and were focusing on a movement to promote inclusion and provide the gift of mobility by supplying equipment and some leg power to those who could use it. I knew that this was in line with everything Shamus and I had been doing for his entire life…. educating others about inclusion, and promoting his involvement and participation in anything he wanted to try.
When were you told Shamus had CP and did that change the trajectory of your life? Being told your child has a physical aberration like CP must be devastating as a parent. How did you absorb that information and translate it into the positive actions you are taking today?
When Shamus was born I was practicing exclusively pediatric Physical Therapy. I worked with countless children with neuromuscular impairments. Shamus was born full term and although Nichole had an extremely eventful pregnancy we were assured that his development had not been negatively affected. We were told everything was fine and that we had a health baby boy. Some of the events during Nichole’s pregnancy included placenta previa which resolved itself, an extreme outbreak of chicken pox shortly after we had made a trip to NYC for the 2005 NYC marathon, and a car accident at 35 weeks gestation in which Nichole’s car was totaled when she was t-boned by a 17 year old girl who had just recently received her driver’s license. The car accident sent Nichole into premature labor for about 48 hours. Eventually medication stopped the contractions, an extensive ultrasound of mom and baby were performed and we were told all was fine.
On January 11, 2006 Shamus was born with normal APGAR scores and we brought him home from the hospital as scheduled. However, even in the hospital I started to notice a few things including Shamus having an extreme startle reflex and fisted hands. I knew that kids often out grow these kind of “neurological symptoms” so I kept quite as to not worry anyone. As Shay developed and grew over the next couple of months I knew that he had some neurological impairments. The fisted hands persisted, his startle reflex remained, and I noticed that he had ankle clonus (a reflexive “tremor/spasticity” when the ankle is stretched). I mentioned all of these things to his pediatrician and was told at every visit that he would outgrow it and that I simply “knew too much and was paranoid”.
As Shamus continued to grow it became evident that he was not meeting his motor milestone (sitting, crawling, rolling, etc). However I continued to work with him and we noticed how bright and alert and curious he was. It did not appear that his thought process or mind was in any way impaired. Finally, when Shamus was 11 months old and not able to sit or crawl I convinced the doctor to order an early intervention evaluation and subsequent appointment with a pediatric neurologist. I was not surprised when Shamus was given the diagnosis of spastic diplegic cerebral palsy (affecting his legs). I was almost relieved that I had been right and that it was not some other unknown. I had worked with lots of kids with CP and although I never envisioned my own child with the diagnosis ( I don’t think anyone ever pictures their child having any type of limitations when they are in utero or new borns), I knew kind of what to expect. Shamus was our first child so we gave him all of the love and attention that new parents would give to their first child.
Nichole is certified in special education so kids with special needs were not foreign to either of us. Without ever really talking about it we decided that no mater what, whatever Shamus wanted to do in life we would try to make it happen. We knew that we would have to make accommodations/modifications at times but we wanted him to experience life to its fullest. When he was old enough to sit in his jogging stroller I put him in and off we went for a solid 20 miles. We continued that on a regular basis, and when his brother Simon was born 20 months later (with no physical limitations), we bought a double jogging stroller.
By the time 2013 came around not only had we put thousands of miles on our jogging strollers but despite using a wheelchair as his primary means of mobility, Shamus had ridden horses, bowled, fished, golfed, downhill skied, wrestled, learned to read music and played piano at his preschool graduation, played baseball, soccer, and gone to overnight summer camp where he completed a high ropes course complete with zipline. By then Shamus had done more than anyone ever thought possible and participated in things I had never done (like downhill skiing and I had only been on a horse a couple of times…Shamus was doing both of those things on a weekly basis in each of their respective seasons).
It doesn’t seem like Shamus gives anyone the opportunity to discredit him due to his mobility impairment, but what sort of obstacles does he face (if any) at his young age or what might he face as he gets older? How are you planning to manage such obstacles?
Shamus faces countless obstacles on a daily basis. He attends a public school and we have semi annual meeting with the district to address his needs. There are several things we have been advocating for several years. Sometimes we are able to facilitate a change, sometimes we have not but We are persistent. It is difficult because Shamus attends a small rural school and is one of very few children to ever attend the school who requires a wheel chair.
We’ll start at the beginning of his day and look at obstacles. Due to significant spasticity and tightness in his legs, weakness in his trunk and inability to get himself into sitting or standing positions, he is unable to dress and bathe himself and requires assistance from my wife and I to complete those tasks. We then transfer him to his wheelchair for the day and the bus picks him up in our driveway. The bus is equipped with an elevator lift. He then gets to school and has to have someone walk with him to the front door of the school because he is unable to propel himself over the deteriorating concrete and lack of curb cuts and the front door is not equipped with a handicap access button. He is unable to pull open the heavy doors from his wheelchair.
In addition we have been working to have modifications to Shamus’ chair so he can better manually propel it independently, however, insurance makes such modifications extremely difficult as they are not covered unless precise justification can be provided. We are not in a financial position to get Shamus all of the equipment he needs without insurance.
Once in the school Shamus shares a class room aide with some of his class mates (his classmates have the aide for behavioral issues while Shamus only requires physical assistance with mobility). He requires assistance with transitions throughout the classroom, to the bathroom, and from one piece of equipment to another (standing frame – to maintain weight bearing through his legs, walker – for short distances to facilitate strengthening and motor planning, ball chair- to work on balance, wheelchair- for longer distance mobility, trip trap chair- for lunch time). He then has PT and OT sessions during the day. He is expected to complete all of the class work of other students (which we want but realize it is extremely exhausting for him).
In the past he had been meeting with a school social worker as well to discuss feeling about having a disability and how he copes. However, we felt the social worker wasn’t prepared to work with someone like Shamus…a child who is advanced cognitively but has some significant physical limitations, a child who can communicate verbally and completely understands what is going around him. We opted out of social work and try to keep him involved in activities to develop peer friendships. Recess has been difficult for Shamus. We have been asking for a platform swing so that he can swing at recess. After 4 years of petitioning the school, and with Shamus now in 3rd grade, the swing finally arrived this spring. It has not yet been put up for him to swing in. We send in toys for him to play with other children (Velcro mits, balls, etc) but most kids want to be running around at recess. Often he will read a book or end up playing with a playground aide.
Beyond the physical obstacles he encounters each day I am sure their are emotional obstacles he encounters but he rarely shares them with us, although we always allow both of our children to talk about their days with us as we eat dinner as a family. Every day the recounts of Shamus’s day are glowing reviews of the fun he had at school…always with a smile on his face. I can’t fathom some of the obstacles he encounters every single day…every minute of everyday, relying on assistance for the simplest daily tasks. Yet it is all he has ever known, maybe that is why he is always smiling (though he sees his brother and classmates are able to do things for themselves), and I know he wants to do things for himself…he is simply patient, persistent and forever positive…I want those traits to last, and I try to learn from him every day.
Shamus seems to really guide your actions with the runs and training. Have you been able to keep up to his coaching demands?
Shamus is the best (and only) coach I have ever had in my adult life. Prior to Shamus guiding my training I had been my own coach basing my training on experience and LOTS of reading. Shamus simply based his training for me on what he thought I was capable of. He knew that I could run 20 miles, so why not be able to do it every day. I simplified my thought process and obliged Shamus in each of his requests as much as my body would allow. To my amazement my body was capable of things I had not thought possible.
Shamus was never told something was impossible so he simply believed. His belief in me was enough to propel me to back to back to back to back to back training weeks in excess of 200 miles with no ill effect on my body. In 2014, thanks to Shamus’ simple training mantra “Run far…if you don’t have time to run far, run FAST”, I won multiple ultramarathons and Shamus and I have won ultramarathons TOGETHER. That’s right, at the age of 7, Shamus became an ultramarathon CHAMPION, AND he had to pull me along behind him!
The dream to run across America was his and without him it would not be possible. He supplies the inspiration, the motivation, and the never ending positive attitude and infectious smile…all I have to do is supply the legs, and with him leading the charge, that’s easy!
This idea to run across the country…what do you think put the idea in Shamus’s head? How is this run going to be conducted and how have you been training for such an endeavor?
Shamus came up with the idea to run across the USA after he had seen a boy “cartwheel across America” on the Disney channel (photos of the boy cartwheeling in different states and with various landmarks across the USA were put into a slideshow during a segment between cartoons). Shamus and I then ran an ultramarathon together (my first ultra and only our 2nd race together). He asked if he could run it with me and since it was a closed course, timed event (6 hour race on a .356 mile loop around a park), I obliged figuring he could run a few laps with me and would then get bored. I figured he could then cheer me on and be race support with my wife. I cleared it all with the race director and we were off and running. I checked in with him periodically during the race and he wanted to keep running. After about 4.5 hours we were still cruising together and my wife made him take a bathroom and lunch break. While he took the break, he insisted I keep running and I obliged. 20 minutes later he was back running with me and at the conclusion of 6 hours we ran over 45 miles which was enough to win the race!
When we got in the car and headed home he asked “How far could we go if we ran that far EVERY day for school vacation?” He had just finished 1st grade so Nichole and I helped him with the calculations and determined we could run over 3000 miles. His next questions was “how far could we go if we ran 3000 miles?” We told him that we could all the way from one side of the country to the other. He liked the sound of that, and that became his mission, to run across the USA just like the little boy that “cartwheeled across America”.
Although Nichole and I thought he would forget about this dream, Shamus (per his personality) persisted with the idea asking us about it on a daily basis. Around Thanksgiving of 2013, 3-4 months after our race he was still asking “when are we going to run across America?” and that night he said “Dad when we run across the USA let’s give chairs to other kids like me so they can feel what it is like to run”. At that point we put the plan into motion.
With Shamus wanting to pay it forward I met with my boss and asked for the summer of 2015 off from work. Having met Shamus on several occasions she was extremely supportive. Now for nearly 2 years Ainsley’s Angels Power to Push has been our family’s focus. We have been fundraising, spreading the mission of inclusion and training hard in preparation for our epic journey. Training has consisted of building up tolerance to LOTS of miles. This summer I will be running nearly 350 miles per week (many of those miles with Shamus) so I have built up to running a minimum of 20 miles per day and running miles with Shamus whenever weather and his schedule permits.
This summer Nichole and Simon will act as support crew with an RV loaded with our daily needs. They will be our mobile aide station. In addition they will be towing a trailer loaded with the chairs that we will be donating along the way. In each state we will present a chair to a family that Ainsley’s Angels is helping us to find. We hope to find individuals to support us along the way with some of the day to day needs and errands and will have immediate family as well as Ainsley’s Angels family meeting us along the way.
I know adversity can really change one’s perspective or offer life learning experiences. What would you say has been your greatest perspective shift as Shamus’s dad?
With Shamus having to overcome physical limitations I think I have truly found the power of belief in one’s self, and the strength that can be gained by simply staying positive when everything else in the world seems to be saying “Why bother”. Shamus has shown me the importance of smiling, pushing forward, never giving up, believing, dream BIG, and knowing that anything is possible.
If you had a global audience, what would be the most crucial aspects of living with mobility impairment and inclusion you would want to convey?
The most important aspect of inclusion we are trying to convey through our mission and journey is that there is no reason individuals with limitations of any type need to sit on the sidelines and watch. They can be fully involved in whatever they want to attempt. Modifications, equipment, and accommodations can be made and there are lots of people willing to help, individuals simply need to know that programs like AInsley’s Angels (and many others) exist. While we spread the vision of inclusion we will actually be providing the gift of mobility by donating equipment to make participation an option.
How can those of us not directly affected by mobility impairment support others managing and thriving through their struggles?
To get involved you can financially support programs like Ainsley’s Angels or get directly involved by applying to be an ambassador. The power to push project has been developed as national outreach. We are always seeking local, and state ambassadors for Ainsley’s Angels to promote involvement and inclusion in their areas. Selected ambassadors receive start up kits including 3 running chairs and lots of AInsley’s angels gear in order to get local children involved in fun runs, road races, bike rides, triathlons, etc. Find out more by visiting the website at www.ainsleysangels.org and click on “Be an Angel”.
What are your hopes for Shamus’s future? And are you scared that when you finish this run, he’s going to set an even bigger physical goal for the two of you?!
I know that Shamus is just beginning to encounter obstacles in his life. For the most part Nichole and I, another family member, or a school aide is always there for him if he needs anything. My goal is for Shamus to live as independently as possible as an adult. However, I try not to focus on the future too much. There are often gains in the medical field and there may be developments that are life altering for individuals with cerebral palsy. For now, we try to take on each obstacle as it presents itself. IT is actually a good metaphor for the way we will tackle our transcontinental run this summer. I don’t want to get overwhelmed by thinking of running 3200+ miles or even 50 miles each day. We will take one mile, one step at a time and work through difficulties as they arise. With Shamus leading the way I know we will succeed. As far as what is next, Shamus is already talking about competing in an Iron Man and then “running around the world” 🙂 Dream Big! ANYTHING is possible 🙂