Merriam-Webster says inclusion is the act or practice of including students with disabilities in regular school classes. In fact, we have laws to protect this right. But is inclusion really working if the concept gets tossed with leftover birthday cake?
Sometimes an innocent, passer-by afternoon can become a swirl of emotion and fear just from reading one little blog post. No, it’s not how I want to spend these moments. But I haven’t learned how to stop the heaviness that presses on my heart after reading Linda Nargi’s words.
Linda’s daughter Lila has Down syndrome. She attends a mainstream kindergarten class and has a specialist assist her throughout the day as needed. In a recent blog post, Linda shared these observations:
“There are little girls in Lila’s class who are very sweet to her. They watch out for her. They treat her like she is a little sister. They don’t treat her as an equal,” Linda writes. “Lila gets invited to all of the birthday parties of classmates who send the invitations home in the backpacks. Lila gets invited to none of the birthday parties of classmates who don’t send invitations home in the backpacks.”
Stemming the tide
Dread. It’s the most common reaction expressed in comments after Linda’s post. I understand. As a parent of a child with disabilities, I feel dread because I know this Titanic of heartbreak is coming and cannot be stopped… but perhaps it can be slowed?
I dread the moment another child laughs at Charlie because his speech is unintelligible. For now, my 3-year-old’s favorite words are “no!” and “wow!” which apply nicely to most situations.
I know one day Linda’s words could be mine. And so I sought experiences from other moms — other guards of what can feel like our own private Titanic — to try to learn what behaviors might help lead us to a more positive, inclusive experience for our children with disabilities.
Five tips emerged from others’ positive, healthy experiences. This list isn’t a sure thing, it’s only a start. But how wonderful would it be if all parents — not just those of children with a disability — read this list and took a second look at their own child’s classroom and the wonderful, beautiful differences that abound?
Embrace or create opportunities
Letting life unfold unguarded is never easy, but sometimes those moments return the most joy. Tamara shares her wariness upon learning her son, who has Down syndrome, was invited to his first “new friend” birthday party. They had been to many other parties — but always those of well-known family and friends. “This was different and so wonderful!” Tamara says. “[He] had a blast!”
Tamara pushed past her hesitation in the interest of her son’s happiness. He has played soccer and T-ball, and “even though he can’t always hit the ball or doesn’t always run to the right base, the players and their parents are always very patient and kind,” Tamara shares. “It is the best feeling to see others genuinely take an interest in and care about your child!”
Seek inclusion yourself
At her son’s school, Jenn is grateful for a policy that if you invite one kid by putting an invitation in the cubby, then you must invite them all. Her son has Down syndrome, and “it’s important [for] the other kids in his class [to] see that he may walk differently and play differently, but he’s not different in a bad way,” she says.
“It also helps the other moms see that Sean should be included where they might not have included him before because they may have felt him unable to participate. It helps me connect with other moms who have kids his age that don’t have special needs.”
Be part of the change
Melanie McLaughlin is the Allen C. Crocker Family Fellow at the Institute for Community Inclusion in Massachusetts. Her daughter, Gracie, has Down syndrome.
“I was one of those parents of typical children before we had Gracie,” Melanie points out. “I don’t think people realize that disability is natural. We are all disabled eventually — whether it’s by old age, health, an accident, etc. I know I didn’t realize it until Gracie gave me the gift of seeing people of all abilities.”
Gaelyn’s son also has Down syndrome. She shares a story about her son’s first T-ball game. “[He got a] hit and got on base, and our coach overheard the coach from the other team saying, ‘Just let him run.’ Our coach quickly said, ‘No, please don’t give him any advantages — his parents and his team see him as a regular player and don’t want special treatment.'” Her son recently received the team ball to honor his contributions to a team win.
Fight for your (child’s) right to party
“I think inclusion is a human right and a civil right and look forward to the day when we don’t even use the word anymore because everyone is considered worth including — because everyone matters,” Melanie says.
That doesn’t mean forcing your child into an unwelcoming situation. It means living and breathing inclusion yourself, as an example to others.
When your child’s birthday arrives, do unto others’ social calendars as you would like them to do unto yours. Invite everyone!
Follow your instincts and know your limits
To describe her son’s class and teammates, Tamara uses words like “blessed” and “loving.” If you’re not feeling similarly supportive and encouraging vibes from your child’s play group, follow your gut and work toward a better fit.
Jenny’s daughter Ella is 7 years old, and has Down syndrome. Regarding her daughter’s social calendar, “if someone hasn’t invited her, I didn’t know about it,” Jenny says. But she concedes accepting all those invitations hasn’t always been easy.
“When she was 2 or 3 years old, I actually hated getting invites from friends of ours with kids the same age as Ella. They would have activities — like bouncearounds — that she just didn’t feel comfortable doing with all the other kids jumping wildly around her.
“For me, it pointed out more of her differences at that time and made me feel more isolated. I would take her if she wanted to go, but it was definitely not my favorite thing to do.” Jenny says as the steady flood of invitations poured in, she learned to move past those feelings somewhat.
The reality of parenthood may be the consistent emotions of worry and fear, punctuated by the indescribable moments of elation and pure love. It’s all or nothing.