Tomorrow Is Too Long to Wait for Inclusion

Inclusive Education Is a Civil Rights Issue

Inclusive Education Is a Civil Rights Issue

By Megan

This article was originally published at Our Girl Gwyneth.

For those of you who are parents, I ask you to follow along with a thought exercise. Think of the time when you registered your child for Kindergarten (or imagine doing so if they are still little). Think about the feeling of finding out who their teacher would be and who their classmates would be. Remember how it felt to prepare them for the first day of school; purchasing a backpack or lunch box, finding all of the supplies, and planning how they would be transported to school. You possibly imagined the scene of your child walking into their Kindergarten classroom for the first time and finding their name on a cubby or assigned to a desk. And they would be surrounded by other kids experiencing the same thing. I’m sure many of you worried about certain things, but mostly I believe you were excited for them to accomplish this milestone; this rite of passage from preschooler to Big Kid.

Now imagine someone telling you that your child was not allowed to have this experience. They tell you that your child cannot go to that classroom on that first day of Kindergarten. They don’t tell you this to be mean – oh no – this denial of a basic childhood rite of passage is “for their own good.” It is “what is best.” Your child needs to be in a separate classroom. Your child is different. Your child is special. Your child does not belong with the other children.

I’ve been doing a thought exercise of my own lately. What would happen if I just registered my daughter in our new school district as a typical kid, and didn’t mention a thing about Down syndrome, IEPs, or Special Education? What if she showed up on the first day of school in a typical classroom? Honestly, I imagine that all hell would break loose. They would take one look at her, label her, and freak out. Because she would NOT belong there.

I am tired of thinking about this. I’m tired of society and biases and prejudice and all of the damned “good intentions” that really only add up to segregation. And I’m especially exhausted by all of the people who will judge me as being melodramatic. Because I truly believe school inclusion for my daughter is a civil rights issue.

Discrimination against people with disabilities is so ingrained in all of us (even myself) that we can, at times, think of them as second-class citizens. The best of us will want to help them, but will also pity them. And in the worst minds, they are thought of as burdens to society or even, less than human. Why are medical companies producing multiple prenatal screening tests to detect Down syndrome and other genetic abnormalities? They don’t make money on products that society doesn’t have a need for, and they are making plenty of money on prenatal screening.

Back to the issue at hand…I don’t want to give the impression that I am in denial of my daughter’s ability to perform in a classroom setting with typical children. I know that she won’t be raising her hand to answer every question. I know that her speech pattern will be difficult for most people to understand when they first meet her. I know that she will always need extra tutoring and might not ever catch up to the intellectual level of her classmates. But I also know that she will learn faster – and be a happier person – if she is experiencing school alongside typical kids. I know that she will have friends. I know that she will be proud of herself for the grades that she tries her hardest to earn. I know that if she is segregated into a Special Education classroom with the opportunity to visit a typical classroom at select times, that she is NOT a real member of that class. She is a visitor. She is an outsider. I know that a lot of parents of typical children take for granted the access they have to public education. I have to fight for access for my daughter. And I might not win.

So please: take back your ‘special’ labels. Reevaluate your good intentions. Think about a child being denied a full-time place in a Kindergarten classroom before they are ever given a chance.

Photo Credit: Wokandapix/Pixabay

MeganMegan is mother to three, a writer of speculative fiction, Colorado native transplanted in Georgia and writes for her blog, Our Girl Gwyneth.

 

Macyn’s First Day of First Grade

Macyn
This article was posted with the author’s permission and was originally published on The Lucky Few.

Today Macyn started first grade. Today I walked the three blocks to her school, lingered longer than any other parent there, and walked away leaving one third of my heart behind.

This growing up and getting big and being in someone else’s care for the majority of the day is happening just a bit too fast for this mama bear.

I watched Macyn hang her new sparkly backpack, the one that is almost as big as she is, on the hook outside of her classroom and follow her teachers and new friends inside. I looked through the door, slowly coming toward me until it latched shut and I could no longer see. Then I ran to the window, stood up on my tiptoes, cupped my hands around my eyes and watched as she sat on a green square on the rug. When I turned to walk away, I was crying. My husband asked what was wrong. I told him nothing… and everything. A thousand reasons to be a sobbing mess, yet not one I could articulate.

Macyn is in first grade.

As we start a new school year, we know its unfolding will be different for us than it is for most. I have a daughter who doesn’t fit into the common mold that (unfortunately) has been created for us. She’s a little different. She talks a little funny and doesn’t always know how to make her wants and needs known. She’s a pretty messy eater. Day to day tasks take her a little longer. She’s a little different.

But she’s a lot alike.

She felt the same butterflies your kid felt on the first day of school, and she talked about her teacher and potential new friends all morning as we got ready. Macyn loves to make new friends. She loves music and dancing. She likes watching movies and jumping on her trampoline. Her favorite foods are doughnuts and cake (although her mom and dad don’t let her eat those things very often). She doesn’t like to be alone, and she gets sad when other people are sad and happy when other people are happy. She’s a lot like the rest of us.

The thing that irks me though, the thing that gets my blood boiling is that most people only see the ways she’s different. This is especially obvious when we start a new school year.

And I get it. I think most of us are prone to seek out people who are similar to us. It’s comfortable and predictable and easy. I’ve seen how Macyn gets excited when she meets a friend who is “like her,” another child with Down syndrome.

But I’m learning that I am the best version of myself when I get uncomfortable and seek out relationships with people who are very different than me. People who challenge my thinking. People who look and act differently than me and in so doing open my eyes to the world around me, a world that I’m otherwise prone to ignore or overlook in everyday interactions.

Sure, it’s easy, and oftentimes it’s nice to be with people who are just like us. But life is so much richer when we allow ourselves to be stretched and challenged—when we take the time to learn from one another.

Macyn has taught me so much. She’s opened my eyes to a world I didn’t know, and I would have missed out on it if not for her. She has been my key to the gate of a secret garden, where the beauty of a flower grows from the dirt, where hard work is necessary and growth is slow and the fruit of our labor is so very, very sweet.

But being a parent of a child with Down syndrome has also opened my eyes to weeds and thorns and the occasional bee sting, not because of Macyn, but because of a society only willing to see how she’s different. There is adversity in any garden. There is a struggle happening within every bloom.

Sometimes, school is one of those struggles. School is a tricky part of raising a child with Down syndrome.

You see, she is in a Special Day Class (SDC), a learning environment apart from the other first graders. We would like her to be in a general education class with them, but this is not an option… at least, not without a little fight.

Macyn went through three years of preschool and then a year of kindergarten. In our four years of school, we’ve learned that this little fight for first grade is not going to be easy.

When it comes to our local public schools, I am discovering that when Macyn steps onto the campus, people are not only noticing Macyn’s differences and how they might hinder her education… they’re also worrying about how Macyn’s differences could hinder the education of the other kids. And this, my friends, simply sucks!

It’s such a strange feeling, loving my daughter with every ounce of my being and then feeling the need to convince people of her worth. When we start a new school year, one of the things at the forefront of my mind is the need to prove to the teachers and kids at school that Macyn is worthy of being there.

And she is. All kids with different abilities are worthy of being in class beside your kid(s). All kids with different abilities have great, great worth. And so what if their behavior is not ideal, if they’re in first grade and still learning the alphabet…so what!

As we start this school year I find myself wishing that when I walk into the office, almond-eyed girl in one hand, IEP in the other, people would greet us like this:

“What do you need?”

“We can do that!”

“Let’s get creative here.”

“Nothing is too tricky for us.”

“Anything to keep Macyn in our class!”

And then, the parent of a typical child would overhear the conversation and chime in…

“We are so excited for Macyn to be in our class!”

“Look, Sam, a new friend.”

“She can sit by Sam—he’d love to help her with her alphabet.”

“Gosh, this must be difficult. How can I help?”

At the start of a new school year, I feel as though I’m stepping onto a battle field alone with the goal of proving my child’s worth. MY CHILD!

I do think people mean well, and they do the best they can with the systems in place. I’m so thankful for friends sending me texts to say that they’re praying for us as we start school. I have friends who are teachers beside me in this battle. I have countless friends who have a child with Down syndrome; with one glance, they see the worth of my daughter. These people were perfect strangers to me until the day we were crying on each other’s shoulders because we “get it,” and not many people do.

So, today was Macyn’s first day of school.

She put on her new uniform and slung her new sparkly backpack over her shoulders and we walked to school. As I spied on her though the classroom window, I thought of all the times the Lord gently reminded me to hand her over to Him. I thought about a sick five-month-old being carried back for open heart surgery. I thought about a feisty two-year-old learning to walk. I thought about a confident three-year-old running into her preschool classroom, ready to take on the world. And then I watched her today, as she sat down on the rug with the rest of her classmates, and I know God’s got her. God created her, God sees her worth and not only does He have my back on this battlefield—He’s gone before us, as well.

Here’s to a great year—one that will have its fair share of thorns and weeds and lots of hard work, but one full of fragrant flowers and sweet, sweet fruits.

Photo Credit: Heather Avis

Heather AvisHeather Avis is wife to her handsome and hardworking man Josh, and mother to the adorable Macyn, Truly and August. After working as an Education Specialist she found herself as a full-time stay at home mom when she and her husband adopted their first daughter, Macyn, in 2008. Shortly thereafter, in 2011, they adopted their second daughter, Truly. And in 2013, their son August was born and came home to be theirs. Heather currently resides in Southern California where between oatmeal making, diaper changing and dance parties she is writing her first book and using her hit Instagram account @macymakesmyday, to share the awesomeness of all things Down syndrome and adoption.  She cares fiercely for the underdog and believes the beauty of Jesus is found in the most seemingly uncomfortable places. She’s a hugger and would love nothing more than to sit across a table from you sipping an Americano and delving into all things awesome. Heather can be found on her blog, The Lucky Few, and on Instagram.

When Our Society Is Not “Ready” to Be Inclusive Everybody Loses

This article was posted with permission from the author and was originally published at the Washington Post.

“Nico will get to participate as an audience member.”

With those words, the teacher explained why my son, a second-grader with Down syndrome, wouldn’t be part of the end of the year performances. These were just little informal plays that emerged from reading groups, groups in which my son was supposed to be included. But the teacher had announced these end-of-the-year events with a flier cheerfully titled, “Come One, Come All.” There were 23 names on the flier, detailing who was in each play on a given day. Nico’s name was conspicuously absent.

The end of the school year should be a happy time filled with celebrations of all the hard work and preparation for a busy summer ahead. For us, though, Nico’s exclusion from these plays was just another reminder how far we have to go.

This year marks the 25th anniversary of the Americans with Disabilities Act (ADA). Later that year, the Education for all Handicapped Children Act (EHA) was reauthorized and re-named the Individuals with Disabilities Education Act (IDEA). While the ADA mandated “reasonable accommodations,” EHA and IDEA ensure “Free and Appropriate Public Education” in the “Least Restrictive Environment” for children with disabilities. In the 1990s and more recently, as the ADA has begun to transform our culture, “least restrictive” increasingly means a typical classroom with an adapted curriculum.

I’m 42 and graduated from high-school in 1991, the year after IDEA was enacted. Throughout my education, in both public and private schools in the Northeast, Midwest, and South, I can’t remember ever meeting a child with visible disabilities. For me, like most people of my generation and older, the “handicapped” kids were kept in separate classrooms and separate schools, fully segregated from the general population.

But all those seniors who are receiving their high school diplomas this year are part of a growing generation of people, with and without disabilities, who have been learning from each other in inclusive classrooms throughout their lives. They’ve seen both the rewards and the challenges. Ideally, they’ll carry the knowledge that inclusion is possible and desirable into their future, shaping how they interact with others throughout their adult lives. That’s only going to happen if they get the right cues from their teachers and parents.

Nico’s Individualized Education Plan (IEP) proposes a roughly even split between included and segregated education. We are not hardliners. My mantra is that inclusion is not same-ness, and that the best approach is to carefully consider the needs of the individual. Nico is very social. His time in the full classroom builds on those strengths. For some subjects – math and writing especially – he needs a quiet space and one on one instruction, so he gets pulled out for those subjects.

He’s made great strides this year thanks to such instruction. I cannot overemphasize the joy and gratitude that we feel when Nico sits down with a book, his finger tracing each word, reading aloud, clearly understanding and understandable. At such moments, his potential feels limitless.

And then something like this flier happens and the doors slam shut. What’s apparent to us is that if Nico’s potential is, in fact, limited, it’s because of a culture that builds barriers towards inclusion, not because of his genetic makeup. In the disability community, we call this the “social model” of disability, in which problems emerge from a society not ready to be inclusive. His teacher is not a bad person, but she is part of a culture for which exclusion seems natural. In her mind, it’s not a big deal to her to send out a flier listing every name but for my son’s, and then, when we asked, to brush us off. No one is fooled by the idea that sitting in the audience equals full participation. Not us. Not Nico. Not his classmates.

What lessons are his peers learning from Nico’s exclusion? He’s had great relationships with them. They whisper to each other that he’s “famous” in the school. When we showed up for a school musical performance in March (another instance in which his teacher had no knowledge of plans for his inclusion), his classmates surrounded him with cheers, hugs, and happiness to see their friend. We regularly get notes sent home, often misspelled in adorable ways, addressed to their “budy Niko,” and painted with pictures of kids having fun.

When a child with disabilities is kept out of an activity, not only will it hurt them (and their families), but the typical children internalize this segregation as necessary. They will carry that lesson forward. Right now, one of the biggest challenges facing the disability community is how to build more inclusive workspace and living spaces, so that people with disabilities don’t have to be housed in isolated institutions and work in sheltered workshops (often for sub-minimum wage). The ADA and IDEA generation is primed to shake up society, but they are going to need positive models.

It doesn’t have to be this way. Last weekend, Nico got invited to a birthday party. The instant we walked into a party room, four or five kids leapt to their feet to come over and say hello. Overwhelmed, Nico had to lay down on the floor for a few minutes, and the kids just understood that including Nico didn’t mean same-ness. They patted him on the back, returned to their seats, and waited for him to be ready. Within a few minutes, he was up, playing video games and otherwise hanging out with his friends. They found ways to include him, and he found ways to include them.

But for how long? How many times does an authority figure have to signal that Nico is just audience, not participant, before the kids stop seeing him as a peer? How many times do parents have to decide to exclude Nico from social functions? He has been invited to exactly zero play dates by other parents this year. He has been invited to only two birthday parties. By the time he’s in high school, will he no longer be welcome in the loving community of peers that I witnessed last weekend?

Nico is going to be fine. We will meet with the principal of the school, articulate a more robust philosophy of inclusion in his upcoming IEP, and make sure to build better pathways of communication next year. Hopefully, the next time this teacher wants to do readers’ theater, she’ll collaborate with the special ed teacher, rather than just inviting those students to watch. All it takes is a consistent expectation of inclusion, something that may not come naturally to those of us raised in schools that segregated the children with disabilities, but we can all learn.

To celebrate the 25th anniversary of IDEA, I am asking all educators and parents to go out of their way to be more inclusive. The law mandates certain kinds of formal structures, but that’s not enough. Kids are smart. They know that “participating” as an “audience member” is that special kind of nonsense with which adults patronize children. Participation is participation, and “come one, come all” must really mean everybody, for everyone’s sake.

Photo Credit: David Perry

David Perry is a freelance writer who focuses on disability issues. He can be found at How Did We Get Into This Mess and on Twitter @lollardfish.

Why We All Should Have The Chance To Hate (Love) Shakespeare

Why We All Should Have The Chance To Hate (Love) Shakespeare

A version of this article was originally posted on Beth’s blog, Grace In The Ordinary.

By Beth Foraker

When Patrick was in kindergarten we needed some sort of incentive that he was willing to work for.
We needed a pay out.
Since I didn’t want an obese child, the pay out couldn’t be candy.
Who am I kidding, Patrick is not candy focused, he’s all about the carb.
He, for sure, would have worked for a fresh baguette every day but I just couldn’t do that.

So we brainstormed and perseverated and finally landed on the library.
Patrick and I could go to the library every day after school if he had a happy face day.
Oh, those happy face days!
That meant that Patrick had listened, worked hard and kept it together.
It also meant that he came in from recess on his own — a true trial for Patrick —
since he couldn’t distinguish when his time was up.
If he saw anyone on the playground, he thought it was his time to play too.

At first, going to the library was a big deal.
We celebrated!
We cheered.
We did the happy dance.
And then we waltzed right in and Patrick spent a delicious amount of time
l-i-n-g-e-r-i-n-g
over the videos and DVD’s,
like a guy named Patrick at a bakery filled with croissants and baguettes and other sourdough options.

He relished the moment.
He perused and paused and savored so many choices.
The library was his spot.

Like all favorite memories, the library still makes him happy but it’s no longer something he works for.
His happy face days are the norm now.
The library is just a pit stop on our way to the park…or a place to go to directly if there’s research for a school project involved.

And so yesterday I casually suggested that we go to the library while Caroline had basketball practice.
Since he is still known for his slow pace of perusal, I was a bit worried we might be cutting it too close.
But we gave it a try.

Like a salmon finding its place to spawn, without thought, he honed himself straight into the kids’ section and started the monumental task of choosing a video.
It only took about 5 minutes and we were done.
He had nothing.

“So, what do you think?” I asked.
“I need the computer.” he replied.
so causal…so big

He gets on the computer and types in his item: Macbeth.

He finds all sorts of options but zeroes in on a Macbeth video in the adult section…we repeat the call numbers to ourselves over and over as we cross through the library.
We find the Shakespeare section and attempt to locate the video.
Nothing.
My mind: tick tock, tick tock
I suggest that we can put in a request for it and he agrees.
We walk right up and talk to the librarian who happens to be a young guy —
note to self: when did that happen??

He says it should be on the shelf…he meanders over to the section with us, finds it for us
(library newbs) and Patrick is smiling…fired up…for Macbeth???

We don’t have time that night to watch the show.

So I wake up to my husband leaving for work and telling me,
“Yeah, Patrick is fully dressed and watching Macbeth.”
Weird.

I come out a half hour later to check on Patrick and he’s engrossed…
full middle English +Shakespearean drama + early morning = confused momma.
I shake my head and keep my morning pace.

He comes out for breakfast asking questions.
“Who killed Macbeth?”
My mind needs simple gimme questions like, “Where’s the toast?”
I do what all motley, sleepy, busy parents do…I tell him to Google it.

He does.
Fascinated he tells me that Macduff kills Macbeth —
because Macbeth had killed Macduff’s wife and son.
I start to get interested.
I can’t help it…
this whole weirdness is also super cool.
It starts to break through my early-morning mind fog: my kid is curious about Shakespeare?!?

I tell him that Macduff got revenge on Macbeth. I ask him if he knows what that means.
He pauses and lets me continue…Macbeth gets killed because he killed other people…he had it coming.
He understands…and he reveals others that Macbeth has killed, Duncan and one other whose name I can’t understand.

But here’s what I do understand.
Talking to my 14 year old son about the plot of Macbeth in the early morning time before school was an unanticipated miracle.
My son has Down syndrome.

The statistic most often given is that women who find out they are carrying a baby with Down syndrome abort that baby 90% of the time.

I like to think that number is a little high…but if it’s 75% or 50% it really doesn’t matter.
Women are terminating their wanted pregnancies because of fear.
Because they don’t think they will be talking Shakespeare to that child, ever.
Because they can’t imagine someone with Down syndrome being clever or funny or
independent
with dreams of their own.

Because all they know is mis-information.

My son is no “gifted and talented” child with Down syndrome, trust me.
But here’s what he has had…access to the curriculum.
He’s been fully included alongside his typical peers and exposed to rich literature, big ideas like
social justice and freedom. He’s been in on class discussions and wrestled with morality.
He’s learned about the arts, history, science and math…just like any other kid at his school.

Once in awhile, his curiosity gets the better of him and he gets sucked in.
It happened when he had to do a big project about New York City in 5th grade.
It happened when he pretended to attend Apple Valley (a school set 150 years ago) in 3rd grade.
It happened with the Terra Cotta Warriors and with 6th grade science camp and music.
And now it’s happened again with Shakespeare.

The problem with limited curriculum for people with cognitive disabilities is that we limit the menu.
I don’t know if Patrick will become a vegetarian, passionate about mangoes or obsessed with granola.
Who am I to decide??
He gets introduced to new foods all the time…that’s part of living.

It’s the same in school.
People like Patrick deserve to have the same menu as anybody else.
We can’t know what will intrigue or light the fire of anyone’s mind — people like Patrick most of all.
If you would have asked me if Patrick would love Macbeth, I would have guessed no.
I would have guessed wrong.

People like Patrick love learning; they light up with excitement when they figure it out.
Just like anybody else.

People like Patrick deserve more opportunities and more depth and more enrichment in school.
Why??
Because we can never guess or know what will touch their hearts and speak to their soul.
Their individual passion and interest is unpredictable and incongruous.
Just like every human on the planet.

So, yes, it matters if people like Patrick get to learn alongside their typical classmates.
Yes, it matters if opportunities are limited.
If the curriculum is watered down and dull.

No mind should be wasted.
Nobody should be denied.

We should all get the chance to hate Shakespeare…or in Patrick’s case, love it.
It matters.

Beth Foraker has a husband and four great kids — 21,19,15 and 8. Her 15 year old son has Down syndrome and has been fully included in her local Catholic school until he graduated last May. She works as an educator, helping train teachers for UC Davis School of Education is passionate about full inclusion for all students, writes a blog, reads for fun and hangs with her family and beloved dog as much as possible. You can find her on twitter and Instagram @inclusionchick or on Facebook at the National Catholic Board on Full Inclusion’s page.

How Not to Work with Kids with Special Needs

Nico in a swimming pool, holding onto a tube, swimming and laughing.

Nico in a swimming pool, holding onto a tube, swimming and laughing.

By David Perry

A version of this post was originally published at How Did We Get Into This Mess? 

This is my son swimming at a party this summer. He’s never happier than when he’s in the pool, using his body, feeling the water, playing and filled with joy. So, finally, my wife and I signed him up for swimming lessons with a special needs recreational association in our community. It’s been going great, until last night. But there are some lessons to learn here.
Here’s the letter I wrote to the program director last night.

Dear _______,

I am writing to express my deep frustration and anger at today’s swim lessons for Nico. I will first explain what transpired, then the problems, then my request for some solutions.

Nico has been working with L. L and Nico established instant rapport and have been going back and forth – stomach, then back, stomach, then back, since the first lesson. I was really happy about the way they worked together, but I did ask about progress towards getting the back of his head in the water and getting him to blow bubbles. The woman from SEASPAR who observes the lessons got in the pool at the end of the last session to offer some suggestions, they didn’t really work, but Nico was happy to work with L. a little at the end of last session.

Today when I arrived L went to work with another boy, and E took Nico. Nico was baffled, upset, and frightened. It took a few minutes to get him in the water and he complained. I also asked E to concentrate on Nico’s stomach – he does better with consistent effort rather than swapping back and forth. E replied that he needed to do both sides for safety, and I suggested maybe 3/4ths stomach – we would really like Nico to swim.

It didn’t go well. Nico did a little kicking on his stomach and a few bubbles, then after a few minutes, she switched him to his back. And kept him on his back for about 20 minutes without a break. She never took him to a wall to rest. Meanwhile, Nico screamed. He screamed the scream he gives out when he’s getting his blood drawn. It’s his absolute fright and unhappy scream. She would ask him to do something and he would say, “no.” She ignored him. Then he’d go back to screaming. At the end, she let him be on his stomach for a few more minutes and he calmed down.

1. A child with severe communication delays cannot be surprised like this. I spent the previous 30 minutes talking about L, preparing him for L, and he was ready for L. If the swimming staff feels the need to make a switch, it is reasonable to expect that they will communicate that with the parents. If they do not understand the complexities of working with children with communication delays, kids who often rely heavily on patterns and consistency to make their way through the world, it is reasonable to expect that they become educated in best practices.

2. If L, or anyone, would like more or less engagement with the parents (L had previously said my engagement was fine), I expect them to contact me and talk about the issues. As a parent, my job is to advocate for my child – but I am always interested in dialogue. I just need to know there’s a plan.

3. Nico loves swimming. His love for swimming provides a pathway to teach him to swim, with gentle and creative pressure to get him to learn to swim properly and safely. More lessons like this will turn it into something terrifying. I will not allow that to happen.

I eagerly await your communication explaining first what happened yesterday and second what’s going to be done differently. I’d like to know what experience the instructors have with children with Down syndrome and what strategies they plan to use to help him swim. I know that they are not specialists for children with special needs, but something has to change.

Terrifying him and forcing him is NOT an acceptable strategy. And it’s totally not necessary.

Sincerely,

So the special rec group contracts with a swimming lessons firm to provide one-on-one instruction. They are not experts in special needs. But the special rec group is, and I hold them responsible  for hiring people who can do the job, and educating people to do the job if they aren’t prepared already.

Nico was having a good time with L, but I really wanted a sense of what the plan was, and perhaps somehow this bothered L. She’s youngish, as parents we can get uptight, and if I bothered her (or if the special need recreational association rep who jumped in the pool and tried to help Nico learn to put the back of his head in the water bothered her), then I regret that. But L is an adult and can say so, either directly to me or through her supervisor.

Here’s the big thing. Children with special needs often CLING to consistency. Sometimes we have to shake them out of that, always we need to prep for something new, What we can’t do is spring changes on them. Nico could see L right there in the pool, working with someone new. He does not have the communication ability to understand why this is happening. Moreover, no one made any attempt to explain to him or to me why this was happening.

During the lesson, I tried to engage at various points, when I wasn’t shaking with rage at being so ignored (but it’s not about me, so I mostly just walked away). E went out of her way to avoid eye contact. I almost stopped the lesson, but I didn’t. This can happen once. It just can’t happen repeatedly.

I am furious. Nico is fine. He came out of the pool pretty happy and I expect him to go back in happily next week. But if this happens repeatedly, it could easily become something scary, rather than joyous.

And I Will. Not. Let. That. Happen.

Update: Apparently “E” is the head of the whole program that my special ed rec folks contract with.

Update: 55 minute conversation with the head of the special rec organization about building dialogue among all parties in the future. I am optimistic that there will be both patience and creativity applied to working with Nico.

About David
I write popular commentary about parenting, disability, gender, and history. I am also a history professor, musician, husband, and father. My essays have recently appeared on CNN.com, The AtlanticThe Nation, and in The Chronicle of Higher Education.
I am the father of a boy with Down syndrome and his precocious and hyper-verbal sister. My wife is a corporate food scientist (who travels a lot), so we work hard to figure out how to achieve a sustainable work/life integration. I am also an associate professor of medieval history at Dominican University in River Forest, IL. My scholarly work focuses on Venice, the Crusades, and the Mediterranean world.
I am on Twitter, Facebook, and Google+.

There Is No Excuse For Children With Intellectual Disabilities To Be Educated In Separate Classrooms.

No Excuses - CACL

These three commercials will make you think again about using excuses for educating students with intellectual disabilities in separate classrooms. From the Canadian Association for Community Living.

Over 70% of parents, whose children with intellectual disabilities are in regular classrooms, report that their children are doing average or better:

Inclusive education is better for all children. Children learn what they experience.

Inclusive education settings enable children without disabilities to learn about diversity as well as respecting and valuing all people.

When children with disabilities learn alongside their peers, they are more likely to: continue in education, get a job, and be included and valued in their communities.

– See more at: http://www.cacl.ca/action/campaigns/no-excuses

 

Do you think there is ever a good reason for educating students with intellectual disabilities in separate classrooms? Tell us about it in the comments section below!

Tale of Inclusion: Down Syndrome and Violence at the Play Area

McDonald's_with_Prominent_PlaylandBy David Perry

This article was originally published at How Did We Get Into This Mess?

Yesterday I got a comment on another post from a parent who ended up on my blog. The short version is that at a public play-place her son was hurt by a child with DS and she didn’t know what to do about it, because how can you blame a child with DS for anything? I offer the comment in full and then my response.

I need advice. I have a four-year-old son who does not have Down Syndrome. Today, we went to a restaurant that had a play area. My son is big (tall and muscular) for his age, and I’ve always been worried about his playing in the play area there in fear that HE might hurt someone. Today at lunch he came screaming and crying out of the play area. It took five minutes to calm him down to the point to figure out that another child hurt him.

At this time, I saw a mother enter the play area and then come back out (by herself) but look at me as if I were a horrible parent because my child is screaming in the restaurant. So, after I finally calm my son down enough to find out that another child pinched him on the cheeks hard (and also I later found out from another child that the same child had first hit my son on the chin…and on the way home discovered that the child had pulled my son’s legs out from under him), I decided to go find the child, explain to him (possibly not in the nicest tone of voice) that hurting my child is not acceptable, and then tracking down the child’s parents (by the way…the woman who stared my child and me down for my son’s screaming was the boy’s mother and she knew what he did and still did nothing to stop the child) to explain to them that their child’s behavior was unacceptable…it turns out the child had Down’s. The one who violently hurt my son.

Of course, I couldn’t take action against the child or the parents, but how do you explain to a four-year-old who only understands that he was hurt for no reason? (By the way, my son did not behave with aggression to the child. Several other children and the parents who were sitting in the play area–the only reason I was not in there physically was because there was no more room for parents–substantiated that the other child turned violent toward my son for no reason.) How is anyone (whether they “know” what they are doing or not…and this child knew that what he did to my child was wrong) allowed to do violence to another? How is it more acceptable for some?

Because I even knew it was “taboo” to blame a child with Down’s for his behavior. I hate to say it, but I’m furious with the parents because they knew that their child was violent, knew that he was the one who hurt my son, didn’t remove their child from the play area, didn’t apologize to my son (but instead looked at me as if I were a horrible mother and my child a horrible child because my child was screaming because THEIR CHILD HURT MY CHILD).

DEAR READERS PLEASE NOTE – The person with the comment and I have exchanged emails and I anticipate she will read this blog. If you are rude in comments, I will simply delete your post without warning! It’s fine to disagree thoughtfully, I’d love to hear better ways of framing a response, but no rudeness to someone genuinely looking for help.

Dear S.

I’m really glad you wrote me and want to have this conversation. It’s important. When my son was three, the idea that he could just go into a play area and be around the other kids as seemed impossible. How could he control his behavior? What if the other kids didn’t understand his limitations? Most of all, what if he got stuck in one of the big climbing contraptions? Could he even physically, ever, go up those ladders and down those slides?

Now he does it all the time. I’m so proud of his physical and social development, but I’m still always worried something will go wrong. So far mostly so good, but your story reminds me of the challenges.

Here are my two key points:

First –  Having Down syndrome does NOT mean one can hurt other people without consequence. That is exactly the opposite of the message that I would hope to convey. I actually think it’s extra vital that we make sure that our children understand the consequences of their actions. It’s a harsh world out there for people with disabilities, and learning control is vital to inclusion. The problem is how. How do you make the connections between actions and results apparent with someone who has speech/developmental delays? There are solutions, or at least ideas, and I’ll offer them below.

Second –  I was struck by how often you talked about feeling shame. Other parents were looking at you, you felt like a bad mother, but you know that you didn’t do anything wrong. It’s not a good feeling. Here’s something to consider – That shame you were feeling, the shame that the other parents are looking at you and blaming you, parents of kids with disabilities live with that shame all the time. It can get really oppressive, making parents like us self-isolate. We just stay home, keeping our kids out of the grocery store, playground, or even school.

I’ve felt it, I feel it all the time when my son acts in a non-typical way, or his nose is too runny and people are judging me, when he shouts in the barber shop, when he dances randomly in the mall, I encounter so many micro-aggressions on a day-to-day basis that you’d think I’d be used to it, but no. I still feel shame.

So I’m asking you, as a parent, to think about that emotion you felt, to know that you were in the right here, but to approach those parents with compassion and empathy.

So now what? I operate under the principle of inclusion, but not same-ness. My goal is to have your son and the boy with DS included together, safely, in the play-space. That doesn’t mean consequence-free violence, but it also doesn’t mean that you can respond to the incident as you would for other kids, because the usual methods of parental reaction – yelling (sadly), time-outs, removal of privileges – might not have any meaning. Yeah, a parent can take away a toy or fun activity from a four-year-old with Down syndrome, but depending on their developmental level, it might not have any meaning. How do you connect the consequence to the act of hurting your son? That’s the challenge here.

The first step is to understand what might have happened. What does the violent behavior – pinching, tripping, hitting – mean in this case? Does it come from anger? Aggression? Confusion? Fear? Sometimes it’s from over-stimulation. Or, and this is pretty common, people with Down syndrome use physical responses as an alternate form of communication. When you don’t have words, hitting or hugging communicates perfectly well from the perspective of the child, and it might not even communicate what you think it does.

People with Down syndrome are not any more likely to be violent by nature than anyone else, in fact probably less so, but they do often have boundary issues. Maybe the parents knew their child was violent, as you say, but maybe not. We – parents – are often surprised by our children’s response to situations. I knew a boy who liked to grab hair and pull – it was an interesting texture and sensation for him. My son often pushes hands away, sometimes slapping, when he’s angry or frustrated. One time my son Nico was so afraid of splashing water that he reached out and grabbed my face with his hand, cutting the skin with his nail, terrified. That’s violent, but different than fighting from aggression or anger, or from knocking someone down because you’re playing ninja and don’t have good control.

The goal here is to communicate. We don’t want four year olds, or fourteen year olds, hitting as a way of expressing their frustrations. On the other hand, typical interventions – yelling, time outs, taking away privileges – might not have a lot of meaning for the child with Down syndrome. When my daughter misbehaves, we talk about it, we make sure to verbalize a clear cause-effect relationship. When my son, who has DS, misbehaves, we have to be more creative.

There are intervention strategies for kids with Down syndrome who are “challenging.” You focus on skills. You focus on communication. You find positive reinforcement rather than punishment (which works better for all kids).

socialstoryOne technique we’ve used with Nico is the social story. They are picture and word-based behavioral stories that try to make sure a person understands a situation and the consequences of actions, to help them make better decisions in the future. They use a lot of positive affirmation and perhaps one or two pieces of instructional advice to try and achieve better response to situations.  Therapists make them for their patients, though parents can make them as well. Here, for example, is a story about playing nicely with a brother, easily adapted for a public playground. Here’s another. Social stories have worked wonders for my son, but each kid is different.

So what might you do if you see the parents again, or if something like this happens again?

Comfort your son and comfort yourself! I’m sorry that people looked at you as if you were a horrible parent, but don’t let them get you down! People judge all the time and are usually clueless about context; ultimately, the opinions of strangers aren’t that important (to me anyway). Remember that no outsider ever has a clue about what’s going on in a family and try to just do what’s right.

Engage the parents. Tell them what happened. I would be devastated to know my son hurt another child, and so might they. Remember that raising a child with special needs is pretty difficult, so once you have calmed yourself and your child, engage with empathy.

If you see these parents again, I can’t tell you they’ll be happy to hear from you, but I think you have the right to talk to them because your son was hurt. Moreover, I think building an inclusive society requires someone to make the first conversational move, to reach out, and I’m hoping you are the one to do it.

I would say something like, “I know you’ve got a lot of challenges, but I felt it was important to tell you that that your child hurt my child today in the play area. Is there a way we can talk to him about more appropriate play? Is there anything that I or my son can do to help?

In the end, I’m really sorry that your son got hurt.

I hope, though, that this is a moment that can lead towards a more inclusive society, not away from it. Inclusion, not same-ness. We don’t respond to this boy hurting your son the same way that we might from another child. Same-ness just won’t accomplish anything. But we DO respond. We must respond, and respond with dialogue, patience, creativity, and empathy.

Photo Credit: Wikimedia Commons

About David
I write popular commentary about parenting, disability, gender, and history. I am also a history professor, musician, husband, and father. My essays have recently appeared on CNN.com, The AtlanticThe Nation, and in The Chronicle of Higher Education.
I am the father of a boy with Down syndrome and his precocious and hyper-verbal sister. My wife is a corporate food scientist (who travels a lot), so we work hard to figure out how to achieve a sustainable work/life integration. I am also an associate professor of medieval history at Dominican University in River Forest, IL. My scholarly work focuses on Venice, the Crusades, and the Mediterranean world.
I am on TwitterFacebook, and Google+.

 

“It’s so sad when people have special needs”: Thoughts on Inclusion from the Bus Stop

Thoughts On Inclusion From The Bus StopBy David Perry

This article was originally published at How Did We Get Into This Mess?

“It’s so sad when people have special needs.”

A caring, sweet, 4th-grader said this to me at the bus stop a few minutes ago. My son and I crossed the street, running and laughing, happy. Then he asked me to go see a dog that was being walked across the grass, I said no, we had to go get in line for the bus, so he said no to me, and then pouted. Nico is really developing his pout lately.

The girl, M, came over and reached out her hands to Nico asking if she could help. He said, passionately, “No!” Then she turned to me and smiled and said, “It’s so sad when people have special needs.”

It’s one of those moments when, as a parent, words fall with a kind of physical force. It’s not that they hurt, at least not in this case, but for me my whole body tenses in these kinds of interactions. I know, or I suspect, that I’m hitting a moment in which I might shape language, perception, action, reaction, and more – not just for my son, but for anyone this child interacts with who has special needs, and her friends and family.

If I handle it right, I hope, I might help build a more inclusive society and I might even manage to erode the gap between help and friendship (seriously, follow that link. It’s really interesting).

I said, “I don’t think having special needs is sad. I think it can be sad when people with special needs don’t get the help they need, and even worse when they don’t have a good community of friends and family around them.”

M. thought about this and said, “I used to help my grandpa. He was in a wheelchair because of the war and his leg.”

I replied, “Exactly, and imagine if he didn’t have you and your family and his friends not just to help push his chair, but to be his granddaughter, to be his friends, and to make sure he has what he needs. And if our community didn’t build wheelchair ramps or automatic doors, so he couldn’t have moved around.”

She nodded. Then the bus came and I had to get my surly boy onto his feet and onto the bus, which he did with only mild protest, surrounding by his aide and three girls, M, F and H, with G waiting for him on the bus.

I’m not quite satisfied with my answer, but I’ll keep working on it.

Two other stories about inclusion and the girls who go to school with my son. And yeah, it’s pretty much the girls, a sign of the ways that girls are pushed towards caregiving early, but that’s another essay.

I’ve written about H before, back on the first days of school, when she included herself with Nico in a way that made me weep. She comes over and has playdates sometimes, and while she and my daughter have a beautiful big-sister/little-sister relationship, she’s never satisfied just playing with Ellie for all my daughter provides her with an imaginative hyperverbal playmate for their games. Instead, every few minutes, she breaks away to go find Nico and see if she can bring him in. Sometimes, it works. On Sunday, the three kids sat huddled in a corner of couch passing two ipads around, giggling and happy. It was so powerfully inclusive, especially given that Nico had refused to participate in my daughter’s birthday party earlier that day (too many kids, too loud, too hot).

F, on the other hand, lives across the street, but I haven’t really processed her relationship with Nico. She’s quiet, or at least a bunch of the other neighborhood kids are really loud. Two Fridays ago, though, Nico’s aide wasn’t on the bus and F was one of the girls who volunteered to help. It didn’t go well at all, but everyone made it home safely.

Monday morning, though, I saw F with a plastic bag with little rectangles of paper, pencil drawings, and words written on it. I asked her what they were and discovered that she was trying to replicate one of the communication systems that the teachers and aides use for Nico. They carry a bunch of communication cards (bathroom, thirsty, desk, marker, etc. They look more or less like this.) to supplement the use of an Ipad-based communication program. F decided to make her own cards. As near as I can tell, no one told her to do this or helped her – she just observed what the teachers were doing and decided to generate her own assistive technology.

So, M, thinking more about the community in which my son lives, I can say pretty strongly that it is not so sad when people have special needs. Thanks to you and his other friends who are trying to do their best to create a more inclusive society. I’ll do what I can to help you.

Photo Adapted from Bernd Moehle (Flickr: School bus) [CC-BY-2.0], via Wikimedia Commons

About David
I write popular commentary about parenting, disability, gender, and history. I am also a history professor, musician, husband, and father. My essays have recently appeared on CNN.com, The AtlanticThe Nation, and in The Chronicle of Higher Education.
I am the father of a boy with Down syndrome and his precocious and hyper-verbal sister. My wife is a corporate food scientist (who travels a lot), so we work hard to figure out how to achieve a sustainable work/life integration. I am also an associate professor of medieval history at Dominican University in River Forest, IL. My scholarly work focuses on Venice, the Crusades, and the Mediterranean world.
I am on TwitterFacebook, and Google+.

Achieving Inclusion: What Every Parent Should Know When Advocating For Their Child

Achieving InclusionThe following is a PDF article that Julie Causton and Christi Kasi wrote which was produced with funds from the PA Developmental Disabilities Council (PA DDC) Educational Rights Grant.

ONE FAMILY’S EXPERIENCE

“The family’s vision was clear. Nate would go to school in his neighborhood with the same friends with whom he ran through the sprinklers. Nate’s family wanted him to learn to read, make friends, and love school. The IEP team supported this vision until Nate entered high school. During his transition meeting from middle to high school, the principal informed Nate’s parents that he would now be attending the “life skills program.” This information shocked the family; why should Nate’s placement be changed when he had done so well in the general education classroom? The principal responded, “This is where students with Down syndrome are most successful. We focus on navigating the community and learning functional skills…” Dissatisfied with these reasons, Nate’s parents began learning how they could work with the IEP team to continue to support Nate’s successful participation in the inclusive classroom. Over a series of IEP meetings, the family carefully laid out their vision for Nate’s high school education, his desire to attend college, and the successful modifications from his middle school years. The team was reluctant, but after several hours of discussion about the importance of Nate receiving his education in the general education classroom, they agreed to support his inclusion. Nate is now a junior taking biology, creative writing, home economics, and world history alongside his peers.”

Click here to DOWNLOAD “Achieving Inclusion: What Every Parent Should Know When Advocating For Their Child” (PDF).

Download the PDF file .

For more from Julie Causton, visit her website, Inspire Inclusion. For more from Christi Kasi, visit her website, Inclusion University.

Watch This Self-Advocate Shut Down Anyone Who Wants To Put Limits On Her Learning

-DON'T LIMIT ME!-- Powerful message from Megan with Down Syndrome - YouTube.clipular

This video is fabulous. 

Watch self-advocate, Megan Bomgaars, a young woman with Down syndrome who is not afraid to tell her educators to “DON’T LIMIT ME!” This video originally was shared by Everyone Matters.

Share this video with your friends and colleagues. What do you think? Did Megan get her message across? Tell us in the comments section below!

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