Tomorrow Is Too Long to Wait for Inclusion

A Place for Parents: Autistics and Allies

Sticker of two people holding hands.

By Larkin Taylor-Parker

Disagreements between stakeholders of various kinds are fairly common in the disability community, but conflict plagues autism discourse. The place of parents is particularly contentious. As I prepared for this post, I glanced around the Internet for what had already been said. There are too many existing attempts to fix this with a blog post, or, worse, one that oversimplifies the conflict or makes a straw man of one side. I decided this would not be another iteration of an endemic, useless thing. As I read others’ thoughts on the subject, I happened on a year-old article called Who Should Lead the Autism Rights Movement? Instantly, I knew how to articulate the problem and solution.

The answer to that question is obvious: people whose lives are most shaped by society’s decisions on what to do with autistic people deserve the final say. Social change that undermines oppression has never been ally-led. Agency as charitable donation is a contradiction in terms. We must take it for ourselves, not wait until others deign to bestow it. The thrust of every argument I have seen against our leadership is that we are too disabled to have a say in our future. I see this sentiment often. It comes couched in sympathy, recommended for convenience’s sake, and presented in the tired terminology of a moldy eugenics textbook in my vintage and antiquarian collection. I have never seen these claims hold up to scrutiny. The arguments are full of transparent fallacies. Besides, Autistics and other people with disabilities are challenging notions of our incapacity in numbers hard to dismiss as anecdotal evidence. Given a measure of control over our lives, we usually improve them. We will always know more about how to do that than allistic* people. We know our priorities, experiences, needs.

Parents may not be able to set the agenda, but they have a natural role in neurodiversity and disability rights efforts. It is partly restraint. They can be quiet in our safe spaces and encourage others to do likewise. They can stop calling anyone capable of typing insufficiently disabled to have valid opinions. They can stop speaking for and talking over us. However, not everything we need from them is passivity. There are active roles no one could better fulfill.

The media asks them about autism before it does us. Parents have the opportunity to amplify our voices where they would otherwise be ignored, redirect questions, challenge purely negative perceptions. Parents can raise money for worthy causes and organizations. The silver lining of the Autism Speaks problem is that many learned fundraising. Parents can raise assertive autistic children with a healthy sense of self-worth. They can bring up kids who carve a place for themselves in the world and understand their right to be here. Parents can stand with autistic children and adults as we demand a fair chance at rich, full, dignified lives.

As parents work to ensure they are on our side, autistics should help. We must find a healthy middle ground between the extremes of ignoring ableism and writing decent people off for one ignorant word. This is more than being humane. It is pragmatism. We need allies more than most groups. At just over one percent of the population, we will never have the numbers to go it alone.

*non-autistic

Editor’s Note: This post was originally published in 2012 and has been updated with a new author bio as well as a new featured image. 

Larkin Taylor-Parker is a second-year law student at the University of Georgia. She is interested in disability rights, the experiences of young professionals from historically marginalized groups, and fixing internet culture. She is also an avid recreational tuba player.

Mix Applesauce with Medicine to Create Inclusive Classroom Communities

jars of homemade applesauce

By Alex Dunn

Inclusion is not a place, but rather a philosophy that all students deserve to experience successful academic and social participation side-by-side with peers. 

What does successful inclusion look like?  Recently Nicole Eredics on her Inclusive Class Blog asked this question and found this wonderful visual from The Parent Leadership Support Group of Georgia, which was posted on their Facebook page, as a response.

From our four year Smart Inclusion research project, I would like to propose some small changes to this great image in order to recognize that in order to create inclusive classroom communities, we need to acknowledge that no two students are alike and that changes need to be made to existing learning environments to reach and teach every student; “barriers to learning are not, in fact, inherent in the capacities of learners, but instead arise in learners’ interactions with inflexible educational materials and methods.  (CAST Teaching Every Student in the Digital Age: Universal Design for Learning, Preface p. iv).

For those like me in the trenches, in schools every day, it is important to ask the question: How can we make a difference to the students and educators we serve and really achieve inclusive classroom communities?  A recent Twitter exchange with Jeannette Van Houten (@jvanhoutensped) and Tim Villegas (@think_inclusive) made me reflect on what we tried to do in our schools at Upper Canada District School Board in Ontario Canada over the past four years.

Educators told us that in order to achieve inclusive classroom communities they, with their students, needed to become proficient across three continuums – inclusion, curriculum, and technology.  In a way, I equate the integration of all three continuums to applesauce and medicine.  Although the technology (e.g., iPads, SMART Technology, Nintendo, Laptops etc) and other classroom manipulatives (e.g., Lego, Wikki Stix etc)  have been the all-important applesauce, I think all those involved with Smart Inclusion research would agree the key to the success for both educators and students has been the way the applesauce of technology has been combined with the medicine of bringing research-based pedagogy (e.g., Universal Design for Learning (UDL), Differentiated Instruction (DI), Aided Language Stimulation, Student, Environments, Tasks, and Tools (SETT) and Participation Models) into practice.  In short, educators cast a UDL net attempting to catch all students but sometimes, despite our best efforts, some students fall through the net and sit on the outside of education looking in which is completely unacceptable.  Pat Mirenda and David Beukleman’s Participation Model (PM) (really Differentiated Instruction with a twist) has provided us a way of catching all students that fall through the net.  As Jeannette Van Houten suggests “failure is a way to move to success”.  The Activity Standards Inventory (ASI), from the PM does just that.  Here is a link to a case study of one of our Smart Inclusion students and how we applied the Participation Model to help identify barriers to participation and subsequent intervention, including the use of technology.

A special thank you to the staff, students and parents at UCDSB for giving their nights and weekends and for sharing their work and that of their children, so that children worldwide can experience the same successful academic and social participation.  This groundbreaking research we have undertaken has been replicated in other school Districts in Ontario and Alberta, Canada.  Many other Districts, educators, parents, and students, worldwide have joined us on our journey to ensure that ALL really means ALL and that we are truly welcoming everyone, all the time, everywhere” (Pat Mirenda).

Photo Credit: Andrew Seaman/Flickr

Alex DunnAs Speech-Language Pathologist at the Upper Canada District School Board and president of Inclusioneers, Alex Dunn has presented across the USA, Canada, Germany, England, Spain, exploring technology (SMART Technology, iDevices, Assistive Technology) and theory as part of Universal Design for Learning Toolkit to ensure ALL students, achieve the goal of meaningful educational, social participation.  Recently Alex Dunn was named SMART Exemplary Educator of the Year for Canada for 2012 and appointed as an Officer for Special Education Technology Special Interest Group for the International Society for Technology in Education (ISTE).  You can find her on Twitter @SmartInclusion or visit the Smart Inclusion Wikispaces Page

Striving for Community as a God-Loving Aspie

man looking up towards heaven thinking about god

By Timotheus “Pharaoh” Gordon

Being autistic and striving to be a Christian is very rigorous at times, especially if there are little resources or examples for such community.

I’ve been practicing Christianity for about a year and two months. It may have been a difficult year of struggles; heck I still have to work on (e.g., having MY OWN convictions that are based on the Bible, not solely word-of-mouth). But I’m growing more convinced that through the power of the Trinity, even autistic people can change the world as Jesus did.

I love studying the bible, praying for people, helping out people, going to mission trips (to take pictures of those experiences), and hanging out.  Sometimes, I would blog about my faith on my website.

Yet, I don’t really feel like a member of the church at times. I interact with people, but not as well in huge crowds (so many people and too noisy). It seems like some would see this as not wanting to fellowship when it’s only part of my autism. I feel like very few of my peers understand my challenges with fellowshipping. I also struggle with emotional meanings behind certain passages.

I’m scared even more when it appears that I’m alone in the fight to stick with Christianity as an autistic person.  I met two boys in a Birmingham church who are autistic, but I’ve yet to find autistic adults who are Christian. How can I be an autistic Christian if there is lack of adequate examples of such persons out there?

I believe that first step in seeing more autistic Christians (especially those who are living independently and are verbal) is to provide resources that could help them grow in the faith. The catch is that resources have to come from someone or an entity who fully understands autistic Christians’ hardships in the world. Resources could even come from a person in the autistic spectrum who been the faith for a long time (e.g., at least 2 years). Providing spiritual guidance from the verbal, independent autistic’s point of view is more beneficial than turning to a place or someone with limited/stereotypical knowledge of the condition.

Meanwhile, more Christians that are autistic should network with each other and share their testimonies to non-autistic Christians. That will inspire many people and convince of how God could work through anyone.

With those, I would hope to see news of more autistic Christians making a difference in people’s lives and less of parent’s woes with raising an autistic child in a Christian household.

(sidebar) Links related to Autistic Christians:

Autism Society (Religion and Autism): http://www.autism-society.org/living-with-autism/family-issues/religion-and-autism.html

Books and Resources on Religion, Spirituality, and Moral Development: http://www.neurodiversity.com/religion.html

Christianity and Autism Forum: http://www.aspiesforfreedom.com/showthread.php?tid=21631

James Tuttle (autism advocate, political advocate, and commentator on spiritual issues): https://www.facebook.com/pages/James-Tuttle/23053891623

Spectrum Ministries: http://www.facebook.com/pages/Spectrum-Ministires

Photo Credit: Carlos Solares/Flickr

Editor’s Note: This post was originally published in 2012 and has been edited for clarity, has a new author bio and has as a new featured image.

Timotheus GordonBorn and raised on the south side of Chicago, Timotheus “Pharaoh” Gordon has loved the power of writing since 3rd grade when he copied love poems and read history literature in his free time. He got married to poetry in 2003 after turning in a humorous poem on his daily routine for a homework assignment. Writing, especially poetry, also helped him develop a voice as an African-American male with autism.
He is a freelance writer and blogger specializing in autism acceptance, social commentary, sports, cosplay, and comic/anime conventions. He is published in online publications such as Football.com, Creative Loafing Atlanta, and Yahoo Contributor Network. In addition, he takes event pictures at anime/comic conventions, rallies, college events, class reunions, 5K races, and church functions. Along with those two professions,  am currently an independent marketing representative, where I utilize social media and word-of-mouth to provide essential productions and show people how they can gain financial independence. Connect with him on Twitter @TimotheusGordon or his other social media outlets.

Why Autism Speaks Hurts Us

a collection of blue puzzles pieces with one red piece in the midst of them

By Amy Sequenzia

Autism Speaks…Are You Listening?

When I was little and started to type, I was saying things like “life with autism is insanity”.  I didn’t recognize autism as an important part of who I am and I was only repeating what I heard. My parents were supportive of my typing and loved me deeply. But they also were told that I could never be happy as long as I “had” autism. The efforts, “experts” said, from families and advocates, should be towards supporting research to find a cure.

That was a long time ago. At some point in my life, I started thinking for myself and accepting autism as the most important part of my personality. I am autistic and that’s who I am. It wasn’t easy and it was bumpy. But if today I am accepted by a growing number of people, if more people read and value what I write, it is because I accepted myself as I am. And I am a proud autistic woman!

Saying Autism Needs to Be Defeated Sends the Wrong Message

I do not have the advocacy organizations of my younger years to thank for that. Back then, they proclaimed in their names that they would “defeat” and “cure” autism – NOW!  They were saying that I had to be defeated, cured from a terrible condition, exterminated. They never paused to think that I, and other autistics, did not really want to be discarded as undesirable. And it is scary when people keep saying that we don’t deserve to be here.

Today things seem to be even worse. Even for me, although I have found my place and my voice. My family and close friends have accepted me as autistic, but the challenges I face are made worse by the negativity Autism Speaks and their followers link with being autistic.  Things are worse because those organizations that once wanted to see me gone, today follow the lead of Autism Speaks.

Most of the Money Raised Goes to Research Not Services

Autism Speaks is a powerful organization, with support of many celebrities and easy media access. I believe most of the celebrities that help making Autism Speaks so recognizable don’t have an understanding of what autism is. They probably want to help and they buy into the picture of despair spread by Autism Speaks.

The same is true for the thousands of people going to “autism walks” and donating money to Autism Speaks. They don’t know, or refuse to acknowledge, that the message they are supporting is that society should fear and segregate their children; they don’t know, or refuse to acknowledge, that all the money raised will not be used to help their children with education, services or accommodations that can make navigate the world a little easier for their children; they don’t know, or refuse to acknowledge, that a lot of the money is used to advertise their children as burdens, as people society should shun, isolate and eventually eliminate.

I Am Disabled and Different, but Not Less

We, autistics, know this well and, with our allies, have been very vocal about the damages Autism Speaks is doing to our lives and to our future.  I keep thinking about my life. Accepting myself was a difficult and long process. My self-esteem was low and I did not have consistent support. People in my life were torn between believing the messages of despair and gloom, and seeing me as a whole person – disabled and different, but not less.

Eventually, we were able to move forward in our process and this is my point: I cannot avoid thinking that it could have been easier, that time would not have been lost and that I could have had many opportunities – now gone – in my life if my family had been offered more support instead of being told I was too defective and that my only chance to be a “real person” was if I could be fixed.

We Need to Cure False Assumptions About Autism

But I am here today, speaking out, despite the predictions of a lesser life. If organizations like Autism Speaks were really thinking about us, they would stop spreading fear of autism and they would start talking to us, the only true experts on autism. They would then help us achieve the goal to cure what really needs to be cured: the false assumptions of what life as an autistic person is, what life with an autistic person is.

And I mean talking to all of us. I for example, am one of the adults Autism Speaks considers helpless and a burden to society. I am said to be a tragedy for my family, although I am not and Autism Speaks cannot tell my family how they should feel about me. I can give the so-called “experts” valuable information about how to better help me with the difficulties I face.

Families Need a Message of Hope Not Despair

Autism Speaks hurts us when families of newly diagnosed autistic children have their energy drained by the negative messages they get from that organization. The fear and the bleak future is all they get. They start resenting the child in front of them and they start hoping for a “better”, “non-defective” child. They waste their energy trying to fix what is not broken, what is simply different. And the autistic individuals are silenced, with an uneasy feeling that we are disappointing to the people we love, that no matter how much we try, we will never be good enough, ever.

If the messages and information they get come from Autism Speaks, they never see autistics that are happy, accomplished, successful and thriving, as autistics, in our own way; or the families that are not suffering, despairing, afraid of the future or depressed because a child is autistic; they don’t see that, fear replaced by acceptance, no longer makes sense. When more families accept autism, they work for the rights of every autistic. And this is a good goal.

We Can All Thrive in Our Own Way

Autism Speaks hurts us when they use all their resources trying to make us look like not good enough for society. We need to fight for acceptance, so that families, allies, educators and policy makers can re-direct their energy to what is uniquely important to each autistic child and adult, so that we can all thrive, in our own pace, in our own way.

No burden, no tragedy, no fear, no despair. Those concepts come from Autism Speaks, an organization that never listened to autistics, and is not interested in listening to us. They don’t have the insight, the expertise and ultimately, the right to direct the conversation about autism. This right belongs to us and we are the only ones who can decide who our allies are, who can speak on our behalf.

Editor’s Note: This post was originally written in 2012 and has been updated with a new featured image, headings and author bio. 

Photo Credit: Flickr/rawdonfox

Amy_Sequenzia_150x150Amy Sequenzia blogs regularly for Ollibean and Autism Women’s Network.

The Reality of Inclusion Is Not as Simple as You Think

Inclusion is the goal.  It’s the ideal way for students to learn, because inclusion seems to be synonymous with equality.  Everyone deserves to access the curriculum.  Everyone deserves to form relationships with people who are outwardly different or invisibly so–that’s how it will be in the real world.  Everyone benefits from the classroom strategies that support students with disabilities.  Those are all true statements… but add a measure of reality, and it’s not that inclusion is no longer good, but the effects for the people involved are not as simple as we want them to be.

I was diagnosed with autism at 21, and it wasn’t a shock for my family nearly so much as a finally!  The issues were not unnoticed–they were only unnamed, and it was very, very hard.  In school, I was way ahead of the game academically, but I often heard that I was “smart enough to know better!”  Know what?  I hated the crowded halls, the lights, the alarms… I actually felt sick from overstimulation but had no way to understand or communicate it.  A “2E” kid (twice exceptional, both gifted and disabled*) with only one E identified has half her educational needs unmet.

Twenty years later, the real world is just as challenging. I’m very verbal with facts and information, but true expression comes through writing far better than speaking.  I’m extremely hypersensitive, and grocery shopping is something I still need direct support to manage; I have trouble making sense of the items on the shelf, because they blend together.  I might as well be looking at a math test or a fish bowl.  The explanation helped others understand, but it took 25 years and maybe awful grocery trips to get there.  Sensory overload impacts my communication, especially when I’m out, so you might get half the correct words, quite a few it’ll-do words, and a lot of pausing… and they go through a blender before I say them, so they might be out of order, too.  I’m often misunderstood and then very frustrated.  Socially, I have little in common with most people my age, unless they like cats, and too much noise or fast-paced conversation are a roadblock to participation.  It’s not that most people want to exclude me.  The barriers aren’t really in their control any more than they are in mine… not unless people stop having multi-person conversations and shoppers stop bumping other people…

Most classrooms have sensory, social, and communication barriers built right into them, too.  Being with a horde of same-age kids who were essentially twice my age socially but half academically and facing changes in schedules and subs who use sarcasm… the lights flickering, the bright posters all over the walls, the hurry-hurry-hurrying, the handwriting… the balls that fly around at recess, the screaming lunchroom with its permanent stink, the bus ride home… even if every student were nothing but kind, there are many reasons that school is inherently exclusive to some kids.  It was much harder to be in the room and look in the right direction than it ever was to get my straight-A grades.

As an adult, having been mis-labeled, mis-understood and just downright baffled long enough, I’ve mostly secluded myself.  Work, leisure, friendships–all based in the autism/disability communities.  I’m involved with an autism nonprofit; it’s both my job and my (only) social outlet. I love that I can mentor instead of being an actress.  I can engage without the fear of a dead end after one question–I still get stuck, but they see the social connection and not the poor delivery.  If things get hectic, I can retreat without being badgered or seen as rude.  I came in late recently and joined the eight other girls at the table.  I was greeted with questions about my cat, how she’s doing, did I have new pictures–my love of cats has typically been cause for a little sarcasm and a chuckle, but these friends, none of whom are all that into cats and with their terrible social skills made me feel like I matter.  I do matter, and I know I do, for the first time in a social setting.  That’s a great feeling, mattering, because they matter to me.

But it definitely doesn’t qualify as an inclusive setting–it exists as a safe space by nature of it being segregated from “everyone else.”  Maybe inclusion isn’t about the other people present or the specific location so much as it’s about the individual’s experience in a setting.  Plopping the autistic person into a group or classroom does not mean it’s inclusive.  The same space, the same information, the same opportunity–they can be even more other-ing by making the differences even more obvious.  True inclusion is a layered, complex thing, but if it’s going to work, the child first and foremost has to feel like a part of things.  Forget jumping into the gen ed class for social studies–the child needs to know what had the class cracking up that morning.  He needs to be a part of the transitions before and after social studies, not inserted into a chair once everyone else is ready.  He needs to be part of the routine, not exempt from it.  He needs responsibility in the classroom, to serve in meaningful ways and not only be served.  He needs to feel free to participate without others staring, to take a guess at the answer without fear of being wrong.  He needs to feel like he can asks questions and respond to other students.  He needs to explore his own strengths and weaknesses. He needs to be treated as a peer; children need to understand disability and capability are not opposites, and that we all show our strengths in different ways.

Inclusion is more about a culture than it is being privy to the same information or experience.  I can sit with my typical peers at a game or go out to dinner and be surrounded by the same conversation… I might hear all the same words, I might see the same plays on the field, I might even have information to contribute… but the sensory, social, and communication barriers in those settings keep me separated.  It feels like their evening wouldn’t change if I poofed into thin air.  If the highest goals of inclusive education are for people to be in the same space for a little while or even for them to be in the same space and attend to the same thing… I think there are better ways to spend our time and effort.  But our goals are much broader, deeper, and worthier than that–we want to foster mutual comfort, connections, and guide students toward seeing past labels to the competence and value in everyone.  When the “included” student is wheeled in and parked on the side of the classroom halfway through the class and the rest of the kids don’t know more than his name and his wheelchair, kids are taught how to tolerate that child in their space for a time. They learn to ignore their curiosity and steal sideways glances to figure it out.  They see that the “included” child must always have an adult right next to him like the baby brother at home.  Not surprisingly, the adult disability community talks about those very same barriers.

In the autism-only spaces of my life, I’ve learned things like reciprocation, when to hold my tongue, and what to do when I don’t have the right words or need a break or need help.  I’ve learned about myself as a friend, an employee, and a leader… that I can ask someone to turn the volume down, that I’d rather be seen as a little odd for being kind than hold back for the sake of being normal.  I was never comfortable with men and feared people who felt authoritative, so I have only ever interacted with other girls and young women.  Finally, I have friends of every sort without fear; I’ve learned that I may have a lot in common with a kid half my age and how to interact with people when there are really no common interests (answer: awkwardly!).  The center is a safe haven, but not because it’s all people just like me.  Familiarity with autism is the only unifying factor there, and that does nothing to make us a uniform crowd. It’s really the culture, one where things like kindness, creativity, and giving someone the benefit of the doubt are the currency–instead of the common currency of impressing other people.

Finally (and cautiously…), it doesn’t quite sit right with me that spending time “included” with everybody is automatically valued over spending time in a segregated setting.  In school, many of us get hung up like pinatas while some “typical” peers take daily strikes for years–and yet this is the social scene where we’re encouraged to learn to belong?  I had some experiences like that, but even more, I ran into situations where I would ask if there were issues between a friend and I, knowing that I don’t pick up on them, and the friend would say no and then later tell me I should have known she meant yes.  I like my friends who use words that mean what they say.  I don’t worry about every chuckle being at my expense.  They aren’t my last-chance friends; they’re the people who are fun and supportive, ones who share my interests and make me feel like I’m valued as a person.  A disability alone should not disqualify a kid or a group as first choice friends.

A setting is considered more or less restrictive because of the people in it.  If we had a self-contained room and a general ed one and switched the kids, we’d have switched the level of restriction.  While a separate class might feel like accepting defeat after a series of failures in less restrictive settings, consider the people who define that setting and how tied up in the “last option” concept their identities come to be.  I think about the sad fact that if we were all the same age, my closest friends and I would have never even known each other existed if we attended the same school.  We pull kids out of the general ed classroom for being disruptive or needing sensory breaks or taking too long to learn to read, but the kids who bully or manipulate others even to an extreme aren’t pulled to a restrictive social environment.  After years with those kids (and adults), I was having a tough time, so I focused on the healthy friendships in my life and the places I liked to be.  For now, I’m staying right here, where I’m challenged and amused and supported and needed–I’m exactly who I am, and I’m happy.

We get a lot of promises from people who have just the thing–books, games, apps, plans, curriculum sets, charts, devices, diets, programs– to teach us how to act more like them so that maybe someday we just might be “included” in their world.  But it’s funny… they never ask how they can learn to be more like us…

Photo Credit: Bust it Away Photography/Flickr

Lydia Wayman is an autistic young adult and advocate. She has her B.S. in Elementary Education and MFA in English and Creative Writing. Lydia combines professional knowledge with personal experience to reach parents and professionals through her blog, books, articles, and speaking engagements. She also works part-time at a nonprofit autism resource center and enjoys mentoring girls on the spectrum. Her message is that people are awesome not despite their differences but precisely because of them.

5 Steps to Getting Your Child Included in Your Community

5 Steps to Getting Your Child Included in Your Community

This summer we will celebrate the 25th anniversary of the signing of the Americans with Disabilities Act, an important piece of civil rights legislation that prohibits discrimination on the basis of disability. While there has been great progress in the disability rights movement, we have yet to see a significant number of children with disabilities participating in inclusive community activities.  At Kids Included Together (KIT), our mission is to help organizations meaningfully include children of all abilities. We believe that activities like childcare, summer camp, scouting and arts enrichment programs can be wonderful places for children to learn and play together, and that both children with and without disabilities benefit from inclusion.

However, we know that it is often difficult for parents who have children with disabilities to access these community-based programs. Parents report that programs are often resistant to serving their children, poorly equipped to make the necessary accommodations, or overwhelming to the child due to the environment or group size.  But we have seen that participation in the community is a wonderful complement to an inclusive education and can help a child build friendships, develop talents and explore new interests.

So, here are 5 steps toward getting your child included in your community.

1. Begin with the end in mind

Before signing up for a program, it helps to consider your goals for inclusive recreation. Would you like to help your child develop or enhance social skills? Are you hoping your child will make new friends at camp? Do you need childcare during specified hours? Being clear about your goals for the experience and then communicating them to the program staff will help everyone immensely.

2. Look to your child’s interests and strengths

Inclusion will be most successful if you select a program that is of interest to your particular child. What does he love?  Is she musical? Crafty? Interested in sports? Does your child thrive in large, busy social environment or quieter settings with smaller groups?

3. Find a program

Although, as a parent, you have a right to access any program that is open to children in your community, you may find it easier to work with local chapters of large national organizations. The YMCA, Girl Scouts and 4-H have all made diversity and inclusion a national priority, and these centralized groups may provide training and support to their local chapters. Larger organizations will have more staff and more resources available to meet the needs of all children.

Another way to find a program is through your local childcare resource and referral agency. Child Care Aware has a searchable directory .  Many of the resource and referral agencies have “enhanced referrals” for families who have children with special needs.

Talking to other parents is a great way to find options for inclusive childcare and recreation in your community.

4. Meet them where they are

When approaching a community-based program, it helps to manage your expectations. When you call to inquire or enroll, listen for a welcoming attitude. Try to view this as the start of a partnership that is focused on a successful and enriching experience for the child. The program staff will need help understanding your child’s specific needs, and they will need to be honest with you about what they can provide. Know that even if your child has a one-on-one para-educator during the school day, it is likely not needed in the out-of-school hours–and not something most programs provide. The program can’t legally require you to provide an aide or pay for extra staffing.

Kids Included Together has tools and resources that can help programs support your child’s needs. Here are a few you can share with a program:

What is Inclusion?

Understanding the Laws Supporting Inclusion

You can also share this blog post from Love That Max that outlines “8 Ways to Include Kids with Special Needs…”

5. Celebrate the success

Your child’s education, growth and development are all collaborative processes. There are many adults who will be involved in helping your child develop unique talents and interests. These relationships with others who support your child will be greatly enhanced when you celebrate the little milestones and successes along the way. Was your child practicing the camp song at home last night? Let your camp teacher know! Did your child mention another child in the program in a positive way? Tell the program director, as there may be a budding friendship there.  By keeping the lines of communication open and celebrating your child’s successes as they happen, you will lay the foundation for a partnership–one that will benefit all involved.

At Kids Included Together, our vision is a world where all children are welcomed and valued in their communities. If you find a program that needs our help, please tell them to visit us at KITonline.org or reach out to info@KITonline.org.

Photo Credit: Melanie Holtsman/Flickr

torrie dunlapTorrie Dunlap, Chief Inclusionista at Kids Included Together. Follow her on Twitter @torriedunlap

Five Steps to Getting Your Child Included in Your Community

The Real Problem With Disability Is How We Think About It

The Real Problem With Disability Is How We Think About It

If you have not seen the Tedx talk by Torrie Dunlap of Kids Included Together, then you are missing out on one of the most cohesive explanations of the different models of how we view disability. After watching this 17 minute video you won’t be able to view disability the same way.

Here is the full text transcript of Torrie’s talk.

Isn’t it a Pity? The Real Problem with Special Needs
Torrie Dunlap
CEO, Kids Included Together

In the early 90s I was a student on this very campus, and actually, on this very stage. I was a drama major who had a dream to change the world through arts education. The world, however, had something different in mind. In one of my first professional theater jobs I was directing a production of the musical Joseph and the Amazing Technicolor Dreamcoat. I don’t know if you’ve seen it but there are a lot of kids in that show. We held auditions and there was a very lovely middle schooler, with a really pretty voice. She happened to use a wheelchair. I remember casting her in the show and feeling so good about myself for casting someone with special needs in the show. How great for her, and how amazing for the audiences who would see someone using a wheelchair in a production. I spent a lot of time feeling good about myself for this. We had some logistics to figure out, so the production team and I put our heads together and we created a set design with the standard bleacher seating and we made a special cut out for this young girl so she would slide right in with her chair and sit next to the other kids. We hadn’t told her about this and on the day we moved into the theater I could not have been more excited. The theater was old and not very accessible, and so three dads had to hoist the chair with her in it up onto the stage. I proudly showed her the cut out where she would sit in her wheelchair. I will never forget what happened next. She looked up at me and said, “How come I don’t get to sit on the bleachers like the other kids?” And wow. I could not believe how badly I had missed the boat. I was so caught up in the visual and the good feelings I had about doing this that I had not even considered that how she participated was her choice- and I had not even asked her. Without intending to, I had marginalized her. I had turned her from a 7th grader who likes singing and wants to be in a play with her friends into some kind of poster child for disability representation in the arts. I never forgot this experience, and how much I learned that day.

In fact, it informed the rest of my career. After many years of teaching kids with all kinds of differences and abilities I took a leap of faith and became a part-time program coordinator at Kids Included Together, a small grassroots non-profit in San Diego that was teaching child care and after school programs how to meet the needs of all kids. Nine years later I became the CEO and we have now done this work in 45 states and 10 countries and we teach thousands of people each year.

I have learned in my close to 20 years of immersion in this field that we can overcome our fears and the barriers that separate children with and without disabilities by changing our mindset.

In 2011 the World Health Organization and the World Bank published a report on disability. The report states children with disabilities are among the most marginalized children in the world.

I believe that a reason why as a society we have not embraced children with disabilities as full participants in our schools and communities is the limitation of our own mental models around disability. We have moved from hiding and institutionalizing children to a world where kids with disabilities are “special” and receive special services in special settings with special caregivers, and they- and their families- are disenfranchised from the community at large and have become their own separate community. I believe that “special” has become a euphemism for “separate.” When we create a separate, “special” places for children where their “special needs” can be met, we are teaching them that their place is over there, with people like them and not in the full community. When young, impressionable children are taught that their needs are too great, that they are too different and that they don’t fit our very narrow definition of “normal” this has a life long affect on their ability to contribute positively to society. Our goal as adults, parents, teachers and child care providers, is to help kids grow up to be confident, happy adults who make a positive contribution to the world. But, when it comes to kids with disabilities we have missed the boat.

The disruption that’s needed is in conceptual models of disability. In the field of disability studies they are known as the “medical model” and the “social model.”

The medical model, obviously coming out of the medical community, but with widespread adoption outside of it, views disability as a problem that needs to be cured or fixed. People who have disabilities are perceived as sick and that only experts can determine what treatments are needed. It’s not that cures or medical interventions are necessarily a bad thing, but when we use the medical model as our way of perceiving disability we view children who have them as a problem that need fixing, and we separate them from their peers without disabilities. This is why we often lead with pity- we feel sorry for people who are broken and need fixing and we feel charitable by helping them and this is where we design “special services for special kids.” We feel good that we have done something kind for “those poor children.” We make a lot of assumptions here that children who have disabilities have a poor quality of life, can’t learn and can’t achieve. We assume they need something different than other kids, because they are “special.”

The counterpoint to the Medical Model is the Social Model of Disability.

In this model we view societal barriers as the problem, and not the child. Disability is perceived not as a negative, but as neutral. In this model we view disability as something that exists in the environment and in society, and it is the failure of the environment and not the person. In order to lessen the impact of disability on a person, we need to change the interaction between the person and the environment.

And because this is TEDx and we like big, fancy words I’ll give you one more- this is the model the World Health Organization works from and the one we use in our work at Kids Included Together. It’s called the biopsychosocial model.

This model accepts that medical labels and diagnoses are part of the identity of the person and environmental barriers are also considered when looking at how disability influences a child’s ability to function in the world. It’s a more holistic approach.

You may see your own perspective reflected in one of these models, or you may feel like you have never thought of it before. But, even if we haven’t been confronted with making a conscious choice to adopt a model, we all have one. We create our own mental models to make sense of the world.

A mental model is a deeply engrained set of beliefs based on assumptions, generalizations, media images, our own experience or lack of it. Basically, how we think about stuff. Think of it as your internal personal algorithm. When faced with a decision, before you are even conscious of it, your mental model goes to work. For many of us, our mental model around disability reflects the medical model- something to fear, something to fix, something to feel sorry for, and that we can feel good when we help less fortunate people. But, what happens when we consciously change our internal model and view disability as neutral, and the environment as a factor. What if we see children with disabilities first as children, and not a diagnosis or as “special?”

Here is a very typical community event- it’s a rodeo for “Challenged Buckaroos.” A special rodeo for children with disabilities. The event is designed for children – no special adaptations for disability are needed or offered that I can tell, and the marketing materials say that this is a chance for some “very special kids to meet real cowboys and cowgirls while being cheered on by their fans.” The piece in the newspaper includes a quote from the organizer about how “rodeo fans can give a great day to some great kids.” What do you think? Medical model or social model? What assumptions are we making about children and their disability in an event like this? Why do children who have a disability label need their own special rodeo? What message are we sending to kids when we create a separate rodeo just for them?

What if the rodeo committee held a children’s event and invited all children- regardless of their ability to attend. Picture what a day at the rodeo with all kinds of kids there could look like. They would make sure that children who needed it had extra assistance, but would anything else really have to change? What do we gain by building a community where everyone belongs?

Here is another one- and I know I am going to get some pushback on this one- and it involves someone many of us hold near and dear to our hearts- Santa Claus. I was at the mall one November day and I saw this poster for a special Santa Claus photo session for special kids. I know these events are happening all over the country, and I bet most people feel good about them. It seems like a nice thing to do, right? Making sure that everyone who wants to can visit Santa. It’s called Caring Santa. For me, this raises a lot of questions- and I hope it does for you too- isn’t Santa always caring? Would you want your child sitting on the lap of Uncaring Santa? What are the barriers to access for Santa? These events are targeted to families who have children with sensory sensitivities, but I wonder if there is a way to meet the needs of all kids in a way that actually enhances the experience for everyone.

What do we gain by keeping kids separate? What do we lose out on when we do?

There are a lot of milestones in a child’s life, for kids who celebrate Christmas a visit to Santa is one of them. For most high schoolers the Prom is a rite of passage. Over the past few years I have seen events called “Special Needs Proms” pop up. These are events that invite teens who receive special education services to attend a separate prom together with other teens from other area high schools. All of the dresses, tuxedos, limos are donated to the teens. Teens without disabilities volunteer at the event as “hosts” to the honored guests and receive their community service credit. The parents, family and friends of the kids view the prom from in real time a live video feed.

I know that as adults we worry about, and we care about kids who might get left out of the prom experience, because they are different. High school is a tough place. But, what if we instead looked through a different lens and put our energy toward making sure that every high school prom is welcoming and inclusive to all the students who attend the school? We need to examine what the actual barriers to prom are for teens with disabilities. Is it really the cost? Is it the lack of someone to be a date? Are there physical accessibility barriers? I wonder what underlying message we are sending, both to the teens with disabilities who may hear us say that they aren’t welcome at a school event on their campus with kids they have gone to school with, and also to the volunteer teen “escorts” and what message we are sending to them about pity and helplessness and separation by ability. And, really, would you have wanted your mom watching you at your prom through a video feed?

I want to introduce you to my friend Addie. She’s 8 now, and in 3rd grade, but I want to tell you about her school music performances in 1st and 2nd grade. Addie uses a wheelchair and also does not use her voice to communicate. During the performance Addie sat 20 feet away from her peers, on the other side of a wall with her aide. The way she was made a part of it was by the decorations the class put on her wheelchair. So, there she is in her adorned chair far away from her peers. You can see which model is in play, right? Fast forward to 2nd grade and it’s time for a music performance. Addie has a teacher using a different mental model and this time she is on stage, next to her peers and she has a meaningful role to play in the show. They had used Addie’s recorder to capture her sister Emily’s voice saying “Thank you for coming to our performance” and after the few songs are over Addie hits a button that starts the recording. Huge beaming smile on her face. The teacher looked at the barriers and overcame them- and it wasn’t that difficult.

This is the opportunity we have. And it is important. Disability is going to touch all of our lives at some point, by disease, by accident, by the natural process of aging and living longer. And we probably all have friends or family members who experience some kind of disability. How do we want to be included in our communities? How do we want our children to be regarded? As something fragile, broken and “special” or as people who have a right to belong in our communities? I believe that when we examine our own mental models toward disability, we won’t default to pity and charity but will focus our efforts on making our society accessible to everyone, and everyone will benefit.

Thank you.

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+.

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