I sat on the tiny blue plastic chair at the semi-circle table and listened to my daughter’s teacher say, “Honestly? At the beginning of the school year, some of the kids were afraid of her.”
While this is not surprising news, it is always disheartening to hear it. In fact, the news Macyn’s teacher’s give me during our parent teacher conferences is never a surprise. I’m pretty in tune with my kids. I’m well aware that Macyn, as a second grader, still tests far below the kindergarten level when it comes to pretty much all the academics. Yesterday, when her Special Education teacher was going over the assessment results, I almost interrupted her and said “That’s nice. I really don’t give a damn though.” Because honestly, I don’t.
Don’t get me wrong here. I have huge expectations for my children with Down syndrome. We will always assume competence when it comes to All. The. Things. I know a day will come when Macyn can read and recognize numbers and count successfully past 15, but that day is not today, and seriously, I DO NOT CARE!
Plus, this is not a post about about that. This, my friends is a post about friendship, about love, about hope, about creating spaces.
You see, before her teacher informed me that some of the students felt afraid of Macyn at the beginning of the school year, we were talking about how amazing Macyn is doing in her general education classroom and how much the peers in her class love having her in there. We were talking about how while Macyn is benefiting significantly in an inclusive classroom, the rest of the students in the class are benefiting from Macyn.
Because inclusion is best for all! (But again, this is not a post about that.)
Macyn has a new best friend. Her name is Maya and she sits next to Macyn in her general education classroom. The first day of school, Maya and Macyn were strangers. As Macyn flailed her way through this new and overwhelming environment those first days, Maya quickly stepped up to help Macyn navigate her new world. Within the first couple of weeks Maya and Macyn were talking about having playdates and within the first month of school, Macyn was invited to her first ever classmate’s birthday party.
When we showed up to Maya’s party I quickly recognized that Macyn was the only school friend at the party and as I hovered over her, as this mama bear tends to do, I also quickly recognized that Macyn felt right at home because everyone at Maya’s home welcomed her in just as she was.
After a few minutes I realized Macyn was going to be just fine without me hovering over her, and so I found a seat at a table with some of Maya’s aunties, cousins and family friends. The woman sitting across from me, whose name is Kim, spoke up first,
“How does your daughter know Maya?”
“Oh, they are in the same class at school.”
“You mean, a special education class? I was in special education classes.”
This news didn’t surprise me. The woman I was talking to was, well, different.
She continued to tell me about her current job program and about her participation in the Special Olympics. When I asked her how she knows Maya, one of Maya’s aunties spoke up and told me Maya’s mom and Kim were neighbors as children and grew up together.
Later at the party, I noticed how well all of Maya’s siblings and cousins were playing with and including Macyn. They were not babying her or giving her side glances. They were not annoyed when she didn’t follow the rules of a game and they adjusted how they went about activities so Macyn could join in.
When I told one of the moms, another one of Maya’s aunties, how impressed I was with her son she informed me that she had an older son who has Autism.
I stood there watching Macyn play with Maya and all her cousins and began to analyze and absorbed this rare and needed attitude towards people with different abilities.
Then I thought back to those first few weeks of school and it all began to make since why Maya was so quick to befriend Macyn…the space for a child with Down syndrome, for a child like Macyn, already existed in Maya’s life.
You see, unlike many of us, unlike the kids who were initially afraid of Macyn, Maya grew up in a home where people with different abilities are fully accepted because they were doing life with people who have different abilities. Maya’s family has created the space people with different abilities deserve in this life.
As a mother of children with Down syndrome, and as a person who believes people should have the space to be exactly who they are, I have to admit that we spend an obnoxious amount of time and energy and resources on making my kids more like typical kids.
No one ever really says it like that, but the longer I live in this Down syndrome world, the more I see it that way.
There are whole organizations devoted to this idea. The second a child is born with Down syndrome, organizations swoop in to offer early intervention. They provide services such as an Early Start Teacher, physical therapy, occupational therapy, speech therapy (if you’re lucky enough to get it when your kid is under 3;). When one of these specialist sits down with me to go over goals we look at a chart that tells us what “typical developing” kids the same age are doing, then we set up the goals with that in mind. We create goals and spend hours trying to get our kids who have Down syndrome to be more like…typical kids.
Now don’t get me wrong here. Both Macyn and August have all of these services and therapies. I strongly believe in early intervention for our kiddos with Down syndrome or other different abilities. Both of my kids are reaching potentials I don’t believe they could without these early interventions. So I’m not opposed to it. Not at all.
And I get how that all sound a little contradictory.
I’ve discovered that one of my greatest challenges as Macyn and August’s mom is figuring out when to push them to help them fit into our society, and when to just let them be exactly who they are.
Here’s the thing, it’s not that the services being offered to people with Down syndrome are wrong or bad, not at all. It’s the overall attitude of the society who has put them all into place. When we are constantly comparing our kids with Down syndrome to “typical” kids and pushing them to be more and more like those kids, are we ultimately “servicing” away the Down syndrome?
Have we failed to create the space needed for people with Down syndrome and other different abilities to be exactly who they already are?
If that space existed in society, no, in humanity, as a whole, would it change our very attitude towards people with Down syndrome? If our world had space for people with Down syndrome, would a new parent’s response to a Down syndrome diagnosis continue to be utter devastation to the tune of a 90% termination rate?
If there was space for Down syndrome, imagine what schools and the workplace would look like. Parents could stop fighting for equal rights and rather people with Down syndrome could easily shimmy their way into the space created for them in these places. Rather than have to bend and stretch and squeeze into a world that is not willing to have them. A world constantly pushing them to be more like “typical” kids.
And it goes way beyond just Down syndrome. There will always be people who are different than us who we need to be making spaces for. When we make space for those who are not like we are. Those who intimidate us. Those who we don’t understand. Those who are different than us, then we have an opportunity to connect with humanity, with our neighbors, with God, in ways we would not be able to otherwise.
I’d be so bold as to say, the lack of space this world has for people with different abilities, is a reflection of our lack of space for God. We cannot force people who are fearfully and wonderful made, but who make us feel slightly uncomfortable or challenge our daily norm, into a mold that is not created for them. When we allow the space…no, when we go out of our way to create a space for people who are different than us, we are in turn creating a space to experience God in a way we never could have otherwise.
And the thing about it is, no one is exempt here. Just because I have a child with Down syndrome does not mean I am done creating spaces in my life. There are people who are different than me, who I need to create space for, in order to better love my neighbor and better know my God. This is the case for all of us.
And here’s the incredible piece of hope in all of this: After Macyn’s teacher told me kids in her class were initially afraid of her, we talked about how those very same kids now totally accept her, just as she is. Those kids created a space for Macyn in their world…and we are all better for it!
Right now, this very day, is a great time to assess the lack of spaces in our lives and to figure out how we can stretch ourselves to create those spaces needed. Honestly? It can tend to be messy, and a little painful, we are talking about stretching and cutting and molding after all. But before you know it the space is there, and your life, our lives, our world, is better because of it.