Sometimes I worry. A lot. I love the Momastery blog, and when Glennon posted the “I can’t keep calm because I have anxiety” shirt, I think I did a fist pump and declared that the shirt had obviously been made for me. Those closest to me have seen my hand-wringing-can’t-sleep-can’t-eat moments when I fret over everything in a vain attempt to somehow control that which is very clearly out of my control. Throughout my life, I have learned how to mask this from most of the rest of the world, and I don’t even think I really understood what was really at work on my mind and body until recently. I could go on and give you more specifics about this, tell you things that would make you either think damn, this lady has issues or ohmygosh, I can relate. But that’s not the point of today’s post. The point of today’s post is to offer a little insight about the type of worries those of in the world of special needs face.

I’m a teacher. A special education teacher. An Intervention Specialist according to my license. My work days are spent in a self-contained classroom teaching a transition-based, employability and independent living skills program to high school students nearing graduation. We focus heavily on post-school outcomes–living and working in the community with minimal or no support, participating as an active member of the community, and improving overall quality of life. When students are referred to me, we consider those things primarily–is she employable and what’s her quality of life likely to be if she doesn’t get some specialized training in this area? Some people no longer believe programs like mine are necessary, that inclusion solves every problem. While that topic deserves a post of its own, let me just say a couple of things: 1) I really really believe in inclusion–it is fundamentally important to everyone, not just those with special needs; 2) I also really really believe in my program, in the idea that inclusion isn’t enough and much like their peers who attend career/technical programs or take college prep classes, my students deserve to participate in a specialized curriculum that is geared toward their unique needs; 3) what I teach is just as important as traditional subjects, and sometimes, for these students more important; 4) a comprehensive, excellent education allows students to access services across the continuum–that a great education can and does strike a healthy balance between the inclusion setting and the resource room setting.

Now, to get on with my point…Our class (along with our sister classes across the hall) schedules regular community outings throughout the school year. This allows students to practice their banking and budgeting skills, learn how to shop for groceries and other items and handle money, participate in recreation and leisure opportunities, and so on. Every time we go into the community, I worry about how my students will be perceived. Did you catch that? I don’t really worry about how my students will behave in the community, about how they will conduct themselves–even my students that have some behavioral issues in the classroom have demonstrated excellent behavior in the community. But I worry that other customers or patrons will be annoyed with them. I worry that store clerks will roll their eyes when we walk in or follow them around, expecting them to make a wrong move at any moment. I worry that other people will simply ignore them, pretend they aren’t there, effectively stripping them of their humanity and dignity by imagining they don’t exist. And I worry that my students will pick up on all of this–they are, after all, sensitive souls, and they do, like the rest of us, experience the normal range of human emotions.

By now, you’re probably thinking this is one paranoid chick. It’s ok because yes, yes I am. And I know that I am because our experience in the community has been overwhelmingly positive. Stores and restaurants have been welcoming and accommodating, customers at the bank and store have waited patiently while my students finished their transactions, sometimes needing coaching from a teacher or staff member. But I do believe the fact we’re there as a group benefits us. It’s much easier to express one’s impatience or disapproval when there’s only one person with a disability holding up the line. It’s much easier to look through them or avoid eye contact when you pass only one person with a disability in the aisle. It’s not so easy when you come upon a large group of these lovely folks, especially when they are protected by the armor of their teachers and paraprofessionals. 🙂

But back to my point. Again. Yesterday, we took our students to the park after our other activities were finished. We were planning on doing a shopping activity in a local mall. Students were going to plan an appropriate outfit for a job interview. But it was a beautiful day. And at this point in the school year, we all needed some sunshine. So we decided the rec/leisure component of our program would trump the practical aspect of our program for the rest of the afternoon and off to the park we went. On the way, I was calm, excited. Not nervous, not worried, like I often sometimes am. And then we pulled into the parking lot. And it was like a switch flipped in my brain. Oh, shit. The park was buzzing with energy–there were kids everywhere, out with their parents and caregivers to enjoy the beautiful weather. And these kids were younger than our students. Much younger. As we got off the bus, I felt my breath catch in my throat. I’ve always been protective of my students, but now–since Eli came along–I’m fiercely protective. It bubbles just under the surface and it doesn’t mean that I coddle my students or “mother” them. And I have to deal with problem behaviors sometimes that make me want to pull my hair out and render me exhausted. But they are still my students. We spend most of the day together. And ultimately, it doesn’t matter what challenges we face together because it’s my job to face those challenges with them. I care about them deeply. The day that I stop caring is the day I know it’s time to move on.

As we walked toward the park and I glanced around at all of the other people, I wondered how they would react to our students. The range of their abilities is great, and in some cases more noticeable than in others. I followed closely behind my students–many of whom headed for the playground–fully expecting to see parents grab their children and whisper to them to stay away from “those kids.” My mind went into overdrive and I imagined conversations might go something like this:
Mom (in a strained whisper, eyes darting wildly around the playground): Kid, come here! See those kids? I want you to stay away from them. Stay out of their way. Don’t go near them.
Kid (in that too loud, too public voice kids so often use): What, Mom? Why? What’s wrong with them?
Mom: Ssshhhhhh! Nevermind. Just stay away!
Kid (getting louder): But, Mom??!!
Mom (straining to hide frustration at this point): Because I said so. And because they’re…different.

Yes, as crazy as it sounds, I really expected to see at least one mom do this as my students stormed the playground. I imagine how our group might have looked–my students, with their young adult bodies, running with the glee of children, thrilled with the prospect of swinging and climbing and playing basketball and basking in the sunshine. Few people would expect them, at first glance, to be so excited about a park and a playground. I think about these things not just for my students, but also for my son. Because the older he gets, the harder it will be to blend in, and the more obvious and pronounced his differences and challenges will become. Babies and small children like my son seem to fare better than adolescents and adults; people have more patience and tolerance because they’re so young, because they’re so cute.

I have to say that my fears yesterday were, ultimately, unfounded. Although I did notice a pair of women exchanging a hushed conversation while they pointed at a few of our kids and looked around, not one mother snatched up her child and left the playground, and not one sitter told her little ones to stay away. We even got a few knowing smiles from people that were either being polite or approved of our outing and the fun our students were having. One young man even invited a group of our young men to join him on the basketball court. Otherwise, for the most part, we were ignored. Which I suppose in our often-socially-awkward-and-contradictory American society, is what a lot of people do to each other at the park.

And that brings me to my next point. Being ignored is another one of my fears. For my students and my son. Because ignoring those who are different–pretending they aren’t there because their differences make us uncomfortable–is a subtle, but no less demeaning, form of discrimination. It is easy to pull off. And it is easy to justify.

“I don’t talk to anyone at the grocery store, so why would I talk to him?”

“That woman doesn’t know any different anyway.”

“Eli won’t even realize he wasn’t invited to your birthday party, honey.”

What gets lost in all of this is that no matter what challenges anyone faces, everyone longs for acceptance. We all want to belong. We all want to be part of the group. And I suppose so many of my anxieties stem from this: that someday, Eli might be the only kid in his class that doesn’t get invited to the birthday party. Someday, one of my students might be the person on the bus that no one wants to sit with. Someday, my son might be the kid that’s picked last for dodgeball or soccer or group work in class. And I promise you, he will know. And he will understand. My students know. And they understand. And it is, and will be, heartbreaking.

I was talking with someone the other day about my son moving up to the next room at his day care. Eli and Evie attend a wonderful day care center. I am thrilled with the care they get there while I’m at work. My children are really loved. Eli’s teachers work on his therapies with him even though they don’t have to, and he was welcomed there with open arms, no questions asked, and with no additional fees. When my kids started there, I was assured that Eli would transition from one classroom to the next with his same-age peers, even if he wasn’t walking, even if he wasn’t talking, even if he wasn’t potty trained. Because the people at his center understand that would be best for Eli. Because they understand that it also benefits the other kids (some people doubt this, but trust me–there is plenty of research proving it…I’ll write about it someday). Because it is the right and loving thing to do. But in this conversation about Eli’s transition to the next class, as other parents were shuffling in and out to get their kids, it hit me very suddenly and very hard: what if the other parents don’t want their kids to be around me son? I faced this as a teacher early in my career, during parent-teacher conferences when a mother literally backed me into a corner and wanted to know why her son had to be in the same class with “those retarded” kids.

And so by my own past experience and my newfound concerns about the future, my fears and anxieties are compounded. And I think I become hypersensitive to things going on around me where something similar could happen. Which is why I worry when we take our students into the community. I worry because I’m not sure how to respond if something like that does happen, and I’m not sure how I would respond. I worry because it will break their hearts. And because it will break my heart.

The truth is, someday, somewhere, someone will be mean to my son. Someone will leave him out or say something ignorant and cruel. There will always be parents that think my son will somehow affect their kids in a negative way. The challenge isn’t simply in how we respond to those situations, but also in teaching my kids to be resilient. And I’m not exactly sure how to do that yet. I see my students, who are acutely aware of being regarded as “other,” and I hear their stories of being excluded or made fun of, and my heart hurts. They don’t deserve to be treated as outcasts. They are no less human than their peers without disabilities. And their disabilities and diagnoses are not their fault.

The fact remains that Eli is different than kids without Down syndrome. He faces challenges many other people will never face. My students are different too. I teach and I write and I share because I long to see the day when that’s ok. It’s ok to have Down syndrome. Or autism. Or a learning disability. Or to be in a wheelchair. Or to be nonverbal. It’s ok. In fact, it’s more than ok. It’s normal, whatever normal is. And it is worth celebrating. People with disabilities are valued members of their families. And they are more frequently being accepted as valued members of their communities. That is reassuring and a sure sign of progress. It obviously doesn’t assuage all of my fears, but it certainly makes me hopeful that the tides are changing.

We parents (and teachers) of children with special needs have a lot of worries sometimes. We have social concerns and medical concerns, fears that get the best of us sometimes. Sometimes, this is a really rough ride. And sometimes we wonder if we’ll survive. Or if our kids will. I can’t take away the medical fears we face–a diagnosis like Down syndrome means there is an increased risk for certain medical complications. Period. (Complications that, I might add, don’t devalue our kids’ lives.) But I can, and I will, continue to try to affect the social aspect. I will continue to write and share, and I hope that you will help to spread the word that kids like my son, kids like my students, deserve to be celebrated.

Have a great weekend! We plan to!



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