Kindness is the language which the deaf can hear and the blind can see. – Mark Twain
Like so many evenings, I am happily sitting in the stands attending another hockey practice, loving every minute of watching Ian skate. I hope to experience every skill finally perfected, every puck in the net, and every one of Ian’s crazy celebrations after a coveted goal. Little did I know, it would not be any of these moments that would move me so deeply. The 2 seconds I was about to witness would break my heart into a million pieces, yet simultaneously affirm that Ian will have meaningful connections in his life.
Practice began, and the coaches were demonstrating drills that the players then mimicked back-and-forth across the ice. After a successful pass and a quick stop, Ian and the boy next to him looked at each other and, without hesitation, they high fived. To most onlookers, this might be a typical event. It happens every day between players and teammates in a variety of sports and is likely never given much thought. For Ian however, this kind of exchange is uncommon. It was an interaction with another hockey player – a typical kid – whose name I didn’t even know (yet). It was not the usual high five that occurs so often, with his Personal Care Assistant (PCA), or with a friend in his special education class. This exchange was with someone who could have easily skated on by to race back to the line, and might not even know Ian’s name. This flash of normalcy in humanity is something I rarely have the opportunity to experience with Ian. A piece of my heart I didn’t know was empty, was filled. Until that moment, I had not truly realized how profoundly I wanted those interactions for Ian.
We all thrive on it: love and friendship, and Ian is no different. Many of Ian’s best buds happen to have special needs* , such as Down syndrome, autism, visual impairments, or other challenges, as well, and they have formed unique bonds. Ian is blessed with these friends, and they accept each other for who they are, without question or judgement. His strong desire to connect with these kids has encouraged him to participate in an after-school sign language club to better communicate with a friend in his class or to create some visual aids for another student. There is no doubt that these children, as well as their families, are a part of our life we couldn’t live without. Added bonus: I am lucky to know their amazing moms who have become part of a trusted circle of unconditional support.
Along with these relationships, enjoying all different kinds of friendships is an enriching part of life I desire for Ian. For instance, the neighbor kids who love to hang out with him, and even trusted him to share their garage passcode– which backfired when he entered their house one night. Or the group of eighth grade boys at school who look past Ian’s socially challenging behaviors to see the sweet, genuine person that he can be. Without being asked, they request to sit with Ian at lunch, and despite the fact that he can be a pain, they also think Ian is fun to spend time with. They have brought out the best in Ian, and I love them for it. This kind of authentic expression of camaraderie is something we strive for, but to achieve it, we must work hard with Ian behind the scenes.
For as long as I can remember, we have collaborated with Ian’s teachers, speech therapists, and specialized programs to teach Ian how to properly socialize with others. Even at fourteen, these skills are still outlined in his IEP and discussed almost daily. He practices and role-plays being aware of non-verbal cues, maintaining a conversation, and seeking someone’s attention – without stealing their school supplies. Sometimes, and understandably so, kids simply do not like him, because he hides their lunch, says mean things, or is just difficult to understand. This breaks my heart, as it would any parent, but I know with time, and persistence, this will improve.
We have all worked diligently to teach Ian the dynamics of friendship, but employing a PCA for twenty-plus hours a week may be inadvertently causing Ian some confusion when it comes to navigating friend relationships. Our PCAs are trained to be the authority figure, yet in the end, they keep him busy, playing games, or doing crafts – all of course based on his choosing. Ian has learned that when his PCA comes over, he/she will do what he wants, and pretty much go with his flow. This relationship differs vastly from a friend who naturally wants to have a voice in how they spend their time. As a result, he has a difficult time recognizing the difference between a caregiver and a friend. I don’t blame him for expecting a friend to do whatever he desires, when this is what he regularly experiences with his caregivers. There is no easy solution, but more recently we have asked our PCAs to find those teachable moments to role model good sportsmanship, sharing, and compromise. Hopefully these skills will carry over to his time with friends.
Even after so much effort exhibited by Team Ian, I am still often disheartened with Ian’s inability to handle himself appropriately with friends. In the structured, supervised school setting, Ian does well, but inviting kids to our house presents a multitude of challenges. Just the thought of it makes me feel nauseous, as I am nervous about what issues might unfold. Of course, Chad reminds me that we need to allow Ian to do some of the same things we allow Grace to do, and that includes having kids over to hang out. He is absolutely right, but it is not exactly a break for us. While Grace was growing up, I looked forward to her having friends over, as they would disappear for hours resulting in a parenting respite. With Ian, it is quite the opposite.
In order for Ian to have a friend over, we need to lay ground rules, check in often, redirect the activities if things go awry, and maybe cut it short, like the time he broke his friend’s only pair of expensive glasses. Or, when Ian scared a friend by keeping him locked in a room without us knowing, jeopardizing our long-time friendship with that family. I know without a doubt, in both situations, Ian wanted to be in control of his environment. He was not trying to be malicious, but that does not change the fact that he acted in a way that deeply hurt his buddies. Fortunately, we are blessed that these families understand Ian and love us enough to want to remain good friends. As a mom, it is painful to observe how insensitive Ian can be, when I witness his love and empathy on a regular basis – like the example of learning sign language to talk with a friend or dancing with me in the kitchen. Despite these obstacles, Ian will only learn if we provide him the chance to do so — even if we need to endure frustrating, embarrassing, or heartbreaking moments like these.
Beyond having dude hang out time for a few hours, another right of passage in childhood is the sleepover. Ian has yet to have one, as this would prove to be the ultimate challenge, even if it occurred at our house. The energy level would likely be so high that actually having him calm down enough to fall asleep, and allow his friend to sleep, may be nearly impossible. Adding to that challenge, Ian is an early riser, most days at 5:30 am. In an ideal world, he would sneak out of his room to allow his buddy to catch more zzz’s. Instead, I imagine him waking me, and asking if I would whip up not one, but two Big Nastys (a quesadilla stuffed with 2 meals worth of food). Most certainly, he would awaken his companion, who is a teenager after all, and wants to sleep past sunrise.
One day, we will embark on the coveted sleepover, but first we will strive for a few hours of successful friend time with no broken glasses or locked doors. I am convinced there will be many more high-five moments for Ian as he navigates the world of friendship. And even if some interactions only last 2 seconds, I will never take these for granted.
As always, I would love to hear from you about your children and their friendship stories? Challenges?
♥ ♥ ♥
*Even after fourteen years of parenting a child with Down syndrome, I still have so much to learn. In fact, I have been capitalizing the ‘S’ in syndrome all this time, when actually it is not capitalized. Yep, my blog editor, Holly, asked me about it the other day. We laughed because she was worried about pointing it out to me, as she thought, ‘Well, Lisa must know, after all she has a kid with Down syndrome.” The bottom line is that we are ALL learning and growing together, and we must give each other a little grace when it comes to these sensitive topics.
I am also learning about the way in which we refer to people with disabilities, as this is ever changing. In my blogs, and in my future book, I will always strive to choose my wording based on inclusivity and respect. I discovered this wonderful resource I wanted to share: APA Style: Language without Bias. I love the first section:
“When you are writing, you need to follow general principles to ensure that your language is free of bias…The language to use where disability is concerned is evolving. The overall principle for using disability language is to maintain the integrity (worth and dignity) of all individuals as human beings. Authors who write about disability are encouraged to use terms and descriptions that both honor and explain person-first and identity-first perspectives. Language should be selected with the understanding that the expressed preference of people with disabilities regarding identification supersedes matters of style.”