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This is a Facebook post of mine from last week that I wanted to share here, as well:

I work for the @Down Syndrome Association of Middle Tennessee, have a God son with Down syndrome, and scores of friends with kids with Down syndrome. Suffice it to say that I ADORE kids/people with Down syndrome. I feel similarly about kids/people with any kind of disability, but this post is geared towards those with some form of intellectual or developmental disability. (which obviously includes a much larger population than just folks with Down syndrome).

I have, for years, advocated for the educational rights of students with disabilities. And I have consistently throughout those years encountered folks who make dangerous assumptions about kids, especially about kids with intellectual disabilities. It happened last week (3 year old with a chromosomal abnormality "needs" to be in a special education classroom because he likely "won't be able to handle" a pre-k classroom with a mix of typical and non-typical kids) and again this week (one reason elementary-aged student with Down syndrome is having behavior is that he "obviously doesn't understand what's being taught in the classroom").

In both of these examples, there was zero data or actual evidence that either of these assumptions were correct, and in both cases, had the assumption not been challenged, it would likely have led to a negative outcome for the student. In both of those meetings, I shared with the team the concept of "least dangerous assumption," with which I recently have become acquainted. Over 30 years ago, special educator Anne McDonnellan coined this phrase by stating that in the “absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to functional independently as adults.” She also argued that educators should assume a student’s “poor performance is due to instructional inadequacies rather than student deficiencies.” In other words, according to Ms. McDonnellan, we should assume competence and ability, not incompetence and inability, AND failing to do so threatens to deprive folks of the opportunities and exposures needed to lead them to living full, independent lives.

THIS, my friends, is the paradigm shift that I believe we so badly need in this world in order to move our wonderful friends with Down syndrome and other intellectual and developmental disabilities from the margins into the mainstream. Turning back to my examples above, I had to challenge the folks at the tables in both of those meetings -- how do we know that so-and-so won't be able to "handle" the inclusive classroom, I asked, and we have no evidence that so-and-so isn't understanding what's happening in the classroom; that's just an unsupported assumption, I stated. In both cases, I'm glad to say, there wasn't a whole lot of push back to my comments/questions, and one team member even stated at the end of the meeting that she "had learned a lot from me" during the meeting. Ha! Obviously, I take zero credit for having come up with this brilliant concept/way of describing how we should approach decision-making related to people with disabilities, but I am grateful that her ears and mind were open to hearing it.

With that, I will simply say that if each one of us can do our part in trying to shift the paradigm from what our kids and adults CAN'T do to what they CAN do, as well as to encourage others to (a) not make assumptions about what folks can/can't do; and (b) if assumptions are made, to ensure that they are the least dangerous assumptions possible, we can all contribute to making this world a much better place where our friends with different/better/amazing gifts are more fully included in every aspect of society!  #yesyoucan#yesican #yesshecan #yeshecan#thecanrevolution

 

Hello, DSAMT community.  I wanted to write a blog post and share a little about myself and my family with everyone.  You may be wondering….what brought me to DSAMT given that I don’t have a child with Down syndrome?  Well, the answer is a little long, but here goes.

Like many of you, I’m sure, my exposure as a child and teenager to individuals with disabilities was extremely limited.  I was born in 1966, before the passage of the federal law in 1975 that gave children with disabilities the right to attend public school.  There was a young man with Down syndrome who lived down the street from my childhood home, and my primary memory of him is him sitting on his ride lawn mower, mowing his family's large lawn.  Regrettably, I never knew much about him, and we never became friends, but I do recall wondering whether he went to school, and if so, where.  Now that I know a bit about the history of educational rights for folks with disabilities, however, I know that young man most likely did not attend school.  Which both floors and horrifies me.

My next exposure to the disability world was when I interned one summer during law school at Disability Education and Defense Fund (“DREDF”) in Berkeley, California.  I was the only intern that summer without either a disability myself or a family member with a disability.  I remember thinking at the time it was odd that I was there without a personal connection to disability.  I was just super interested in justice for underserved communities, including the disability community.  Little did I know that I, myself, would soon become deeply immersed in all things disability-related.

Flash forward to 2000.  My husband, oldest son and I were living in Maplewood, New Jersey, anticipating the arrival of our second child.  This pregnancy had been different than my first.  The baby was quieter, calmer, almost to a worrisome degree.  The baby was smaller by nearly two pounds at birth than my first, didn’t nurse well like my older son, and failed his hearing test in the hospital.  While none of these things were major red flags at the time, looking back, they were very early signs of what was to come.  We took our seemingly healthy baby home and over the next few months, I began to worry more.  Baby Graham didn’t smile when most babies his age were smiling, he didn’t turn his head when his name was called, and he seemed disengaged.  Then, he began missing major physical developmental milestones, like sitting up and rolling over.  I visited my parents in North Carolina with Graham and his older brother when Graham was around eight months old, and when I got back home, my Dad faxed me a one-page list of developmental milestones — his way of suggesting to me that something was “off.”

So, at Graham’s one-year check-up with our pediatrician, I again raised my concerns about his slow development.  Although Dr. Boodish tried to reassure me that all was well and that “all children develop differently,” he relented and referred us to a developmental specialist, who ran multiple tests, one of which revealed that Graham had “extra genetic material” on his 15th chromosome (official diagnosis: Isodicentric 15; now called Dup 15q syndrome).  And so our journey began.

I could go on and on about our 19 year journey with our wonderful, magical son, but I want to bring this back to my position with DSAMT.  Several years after Graham was born, dear friends of ours in New Jersey who were experiencing infertility issues decided to adopt a newborn with Down syndrome.  They asked my husband and me to be his God parents.  Although they now live in Wisconsin, and we don’t get to see them often, we adore our Patrick!!  Shortly after moving to Nashville, our family became friends with a family with a son with Down syndrome and we all became huge Brian fans!  A few years later, I had the opportunity to help that same family fight their school district’s efforts to force Brian to undergo an IQ test, something the family thought was inappropriate and unhelpful.  With the help of a lawyer friend of mine, and great courage on the part of my friends, Brian’s parents, the family won their case.

It was official — I was passionate about issues affecting kids with Down syndrome.  Over those early years in Nashville, I had also become passionate about helping families of kids with all kinds of disabilities navigate the educational system.  This passion led to several professional positions, culminating in my creation in 2011 of the Special Education Advocacy Center.  Over the next six years, SEAC would serve hundreds of families all over Middle Tennessee by helping them fight for the educational rights of their kids.  During those years, I became acquainted with Alecia Talbott and involved in various trainings and workshops for DSAMT.  Since then, I also have had the great privilege of sitting next to many parents of kids with Down syndrome in IEP meetings, helping them obtain appropriate services and supports for their amazing kids.  In short, I have loved getting to know and advocate for students with Down syndrome and their families!

Flash forward to 2019, when Alecia approached me about the possibility of joining the organization as Director of Policy and Advocacy.  I was, needless to say, THRILLED.  My journey to this place — like the journeys of each of you — has been long and windy, full of mostly good days but spotted with the dark, awful, challenging ones, as well.  I am grateful for that journey, though, and for our kids who make us better people and who teach us lessons we couldn’t and wouldn’t learn any other way.  I am grateful to be a part of DSAMT and I look forward to working with you all.

xo

Erin

  Hello, Nashville!

My name is Paul Daugherty. My blessing, one of many, is my daughter Jillian Daugherty Mavriplis. She’s 27 and has achieved a lot: High school graduation, four years of college, full-time employment, complete independence and marriage to the love of her life, Ryan. Oh, she has Down syndrome. Almost forgot that.

We’re grateful, but also mindful of what it took for Jillian to get where she is today. Every dream begins with imagination and comes true with determination. My wife Kerry and I never doubted our daughter’s life would be as full and rich as she could make it. We gave Jillian the means to succeed, fighting for her right to be fully included in school and wholly accepted by her peers. She did the rest.        

Jillian was born 10 minutes after Kerry got to the hospital. Like a watermelon seed between two fingers. When she was 5 weeks old, bronchiolitis clogged her lungs to the point that she almost died of suffocation. Nine days into her hospital stay, a nurse poked Jillian in the head with yet another needle. Our daughter became so enraged, she let out a wail heard across town. The force of the scream knocked the mucous from her airways. Knocked the snot outta her, you might say. This was a young lady who would be heard from. We left the hospital the next day.

Jillian’s ambition and love of life was equal to the challenges we placed before her. None of our prodding (and warfare in school conference rooms) would have worked without Jillian’s fearless determination.

We allowed her to define herself. As they say on the TV show Born This Way, we didn’t limit her. We still don’t.

I cannot tell you the joy and the wisdom she has brought to our lives. Our family members are better people for knowing her. The world is a better place. I doubt I’m telling you anything you haven’t experienced yourselves, with your own children.

I wrote a memoir about raising Jillian. An Uncomplicated Life is available in hardback, paperback, Kindle and audio, on Amazon. You can also order it on my website about Jillian, pdaugherty.com. Please visit the site. We try to update at least once a week, with uplifting stuff that’ll make you smile.

Thank you so much for welcoming me and my family to your blog. As always,

Expect. Don’t Accept.

Paul Daugherty