Around the age of five Shaun was diagnosed as autistic with impulse control disorder. Instead of looking at our families’ situation as strange, I was struck by all the wonderful things that made him special rather than different – from his great memory that had a knack for recording every last minute detail of an event to his love for any movie that had music in it. Being musically inclined myself it seemed like a huge bonus that I got to re-experience Walt Disney classics years after it was way too uncool to do so. Of course I was able to under the guise of watching them with my younger brother. I guess now is as good a time as ever to admit I continue to use that same excuse, twenty years later. In fact – not a car ride or a visit goes by now where I don’t plug my iPhone into the car radio and YouTube search “sesame street telephone rock”, “jungle book – that’s what friends are for”, or “Little Mermaid – part of their world,” and join Shaun in a chorus of the classics. Shaun is a smart young man with an incredible boyish charm to him. His has a rich innocence and is willing to let anyone with interest into his world without question or judgment.
There were some unbearably hard times growing up with Shaun. Countless memories come to mind but a few stand out. One was his first Grand mal seizure. Shaun has been plagued by so many unfair medical conditions in his life. One of which is epilepsy. We were living in Rochester at the time and I remember Shaun outside playing in our large yard. My mother asked me where he was and after a brief frantic search we found him convulsing and foaming at the mouth by the side of the garage. I’ll never forget that moment. I ran in the house and called my best friend’s mom, a nurse, who lived down the street – followed by 9-1-1. It was perhaps one of his longest and worst seizures and I’ll never forget how my 12 year-old brain was convinced he was dying right there on the side of our garage on that sunny day. That day something changed inside me. Looking back, it was that day where I started to see Shaun less as a playmate and more as someone I loved dearly and whom I would always needed to look out for. His protector.
One of the worst moments I remember growing up is during a phase where we were trying to integrate Shaun into school with “typical” children just slightly below his age. This ended up being a disaster in the long run but in the short term I can see how the parties involved could have trouble judging the pros and cons. While I’m sure the social interaction was in some ways good for Shaun the cruelty was astounding. Shaun’s response to cruelty and anxiety has always been, and remains today, negative behavioral episodes – and there wasn’t any shortage of them during this new phase. The moment that stands out to me was one day when he got home off the school bus he came in the house happy as can be. I’ll never forget how happy he was that day – he had had a great day at school and was ready to be home with his family and play. He just wanted to play. When he turned around to go into the kitchen there was a sticky note on his back. I was too young to remember exactly what the note said but the sentence that will stay with me forever was “I am a stupid retard.” Some may say this is just kids being kids. “Kids are cruel”, one might say. But this instance, which Shaun doesn’t even know about (nor would he care about if he did) created a scar in my heart that will never be healed. To this day I have a passionate hatred for the word retard. Even if not used in an intended derogatory way – to me people who use the word are demonstrating several qualities including signs of unintelligence, lack of respect, lack of vocabulary, bigotry, and just plain crass
Sitting here sharing these thoughts it occurs to me I could go on writing for hours exemplifying the unjust cruelty that Shaun has had to endure at points in his life. From being punched in the face several times by a staff member at a group home to the looks that other parents and families would give him when my parents took us out as a family. I still remember the way adults would look at my parents with eyes reeking of judgment. “Control your kid” their eyes would say. “Don’t you know how to parent?” I don’t know how my parents put up with it. There are no words to say how thankful I am and how much respect I harbor for the way my mother and father parented Shaun. They would never hide him at the house. We did everything that any other family would do, despite Shaun’s extremely difficult behavioral issues. From family vacations all over the country to simple nights out at restaurants, we did it all. And boy did Shaun love it. And my youngest brother, Nathan, and I loved having Shaun there with us. It’s funny – some parents dread the idea of simply taking three children out on a day trip. My parents did it weekly with us even with Shaun’s behavioral issues. Looking back, I feel blessed.
Shaun and I have a relationship like no other. The best way I can describe him is a little boy trapped in a 26-year-old’s body. He loves his toy cars, his sesame street (always VHS tapes, still hasn’t warmed up to DVDs), his Disney classics, swimming and bicycle rides. He still develops innocent crushes on girls but constantly reminds himself “you are too young for girlfriends.” (Shaun talks in the third person). I hold his hand, I kiss him on the lips, and I blow raspberries on his neck. I love him so innocently and purely that I long for others to be able to feel how it is to share this type of relationship with someone. It’s so unique and pure. It started as me wanting to show him the love that I think he sometimes lacks in his life – living with other “clients” and being cared after by “staff” – but has evolved over many years into a mutually rewarding relationship, so much so that I don’t know what I would do without his love.
Shaun and both of my parents have incredibly special relationships. Shaun calls my dad often, sometimes dozens of times a day. My dad is like Shaun’s calendar. Shaun calls his before and after almost everything he does – constantly checking in. My dad is Shaun’s rock. My mom had always been Shaun’s emotional connection to life. He affectionately called her his “snow baby angel,” nicknamed after little figurines she had once collected. I’ll never forget the moment twenty months ago when my mom sat Shaun down on her outside deck and told him she was going to die. The moment was one of such intimacy that I cannot rightly describe the whirlwind of emotions going on at that patio table that afternoon. Shaun just looked down and told her he loved her and that he would never forget her. Then we all simply cried together. I know Shaun couldn’t grasp the gravity of the conversation, of the moment, but when I look deeply into his blue eyes I feel closest with my mother. I sometimes look at my family – those with us and those who have left us – as a piece of cloth with Shaun being the thread that holds us all together.
After years of looking after Shaun (slowly evolving from a brother to a brother-guardian figure) I found myself wanting to do more. I wanted to do more for people like my brother and for families like my own. I concocted a simple idea to use Facebook’s “causes” application to help out a non-profit organization. I was looking for one that helped out people with intellectual and developmental disabilities and their families. The only elements missing were A) an organization to benefit and B) a way to raise the money. The way to raise money quickly became evident to me after going on my first hike in New Hampshire’s White Mountains. After a friend informed me that there were 48 four-thousand plus foot mountains in the Whites I decided I would pledge to climb them all to raise awareness and money for an organization. I spend the next few days e-mailing organizations and was quickly contacted back by the amazing folks at The Arc of Massachusetts. I quickly discovered what a truly amazing organization The Arc is. Their mission, to enhance the lives of individuals with intellectual and developmental disabilities and their families, couldn’t have jived better with my own. Thus was born “Tim’s Climbing for a Cause.” As of now, two years later, I have raised over $10,000 and have eight mountains left to trek.
After developing such a strong bond with The Arc through the years I was able to get a seat on the board of directors roughly six months ago. Since then I’ve had a close first-hand look into the many amazing things The Arc makes possible for our community on a city, state, and country-wide scale. From a constant and strong presence within the state legislature to providing countless support systems and much needed advocacy to families like my own on an individual basis – they do it all. My main goal at The Arc is two-fold. First: To utilize social media to create awareness. People need to share their own stories and reach out to others. The only way to make true progress in any area is to continue to branch out and reach new people. Second: To stress the point that any young person has the power to get involved and make a difference. I am a twenty-nine year old letter carrier with a high school education with no non-profit background. I have already made a difference and my ability and power to do so only continue to grow stronger the more I get involved. You can do the same.
Written and submitted by: Tim Evans