Small Talk Leads to Big Rewards

Our group of adult self-advocates are learning that small talk is where real opportunities begin.

These adult self-advocates meet once a month to hone their communication skills. It was an idea I got from a program out of Maryland. Our mantra is “I can,” and you can read about our first session here.

Our end goal is for these nine self-advocates to act as our 15th Annual Buddy Walk Ambassadors. They’ll educate attendees about Down syndrome and the programs our local Down syndrome group provides. They will also escort VIP guests like Ohio Representative Niraj Antani. Since we know where we’re going and what we’re doing (advocating at the Buddy Walk), now we’re learning how small talk will get us there.

Small talk is like a free, unknown gift. There’s no initial cost or risk, but the outcomes are endless.

Small talk can lead to just a pleasant exchange with a stranger or an amazing job offer. You’ll never know what you’ll get unless you try.

But conversational skills require you to think on your toes. This can be hard for anyone, and it was an obvious challenge for some of our self-advocates.

35-year-old Joe had a 14-year start on the rest of us!

He’s a loyal employee of Kroger grocery store for the last 14 years, and is now a natural at making small talk. I watch him do this every time I visit Kroger, and he is a great coach for our other self-advocates.

Our amazing Theater Educator, Stephanie Radford (heavy on the “RAD”), added another tool to our communication toolbox with a conversational acronym: FORD.

“If you get to the Buddy Walk and can’t think of anything to say to Congressman Antani, remember FORD,” Stephanie urges.

Small talk usually revolves around FORD, which stands for (Family, Occupation, Recreation, and Dreams). These are always safe topics to bring up to a complete stranger.

By the end of our session we created a web of small talk with questions like:

“What do you like to do with your family?”

“Do you work?”

“What’s your favorite hobby?”

“If you won the lottery what would you do with the money?”

It seems so simple, and studies show that small talk actually makes us smarter. It forces you to take someone else’s perspective and boosts our ability to problem solve.

Another great point Stephanie makes, is people love to talk about themselves.

How better to engage Buddy Walk attendees and get them to listen to our advocacy message than to ask them about themselves first.

I love how each of these self-advocates are so open to learning new techniques that will help them become better communicators. It takes a lot of courage to step out of your comfort zone. That’s why we love the informal workshop approach, because they have a safe space to practice skills like small talk.

15th Annual Buddy Walk: HERE WE COME!

May 30, 2017December 11, 2017

InclusiveU: What College Should Look Like for Students with Intellectual Disabilities

Many people agree, college is some of the best years of life.

It’s the first time we live independently. We make decisions that will shape our life forever. It’s a place were lasting relationships are made.

This experience is no different for Josh, a recent graduate of Syracuse University.

He cheers for the Giant Orange in the Otto’s Army section of the SU football stadium. He hangs out with his friends at the UU and interned at SubCat, a professional recording studio off campus.

“SubCat was my favorite internship. I could find out information about getting a job and how to work with the people involved in the job, like the boss or co-workers,” Josh says.

All of these experiences are extraordinary compared to your typical college student, because Josh has Down syndrome.

There are currently more than 260 college programs available to students with intellectual disabilities. The cream of the crop is Syracuse University’s InclusiveU program in New York state.

Related: Yes, My Son with Down Syndrome Can Go to College

I got the privilege to hear InclusiveU executive director, Beth Myers, speak at the first annual NDSS #DSWorks conference in Washington, D.C. I learned how the program fully integrates students with intellectual disabilities into the fabric of campus life.

InclusiveU is one of only a few college programs that practices full equitable inclusion.

This means students with intellectual disabilities declare a major, enroll as an audit student for certificate (which is open to all students), take the same classes as their typical peers, and live with them in the dormitory.

Josh recall’s his favorite professor: “My favorite memory was working on the lights with David Bowman, one of my teachers. He was a really fun guy to be with. Doing the lights for the stage is one of my goals for the future and part of my major.”

A peer-to-peer program helps to facilitate this inclusion.

Josh says, “I got to go to classes, I would study with my peer partners, Cindy and Lindsay. My favorite classes were the classes at Syracuse Stage and stage techniques, were really fun. I graduated with a certificate in Visual and Performing Arts.”

Modifications and adapted coursework allows students to experience a wide-range of courses on campus.

Students have full access to the course catalog, but they can’t take Writing 400 unless they’ve passed the prerequisite courses.

InclusiveU uses Project Search to help students with independence skills. “I love it. The reason why I loved Project SEARCH was because I could explore all the job opportunities I liked,” Josh explains.

The 42 students currently in the program are expected to complete three employment internships on or off campus. They also take seminars in communication skills, professional dress, employment, and self-advocacy.

Entry into the program includes a written application and in-person interview. The student doesn’t need a high school diploma, and the program doesn’t look at GPA or SAT scores. InclusiveU accepts students who are non-verbal, non-readers, and who have low mobility.

Related: Inclusion for Students with Down Syndrome is Just a Click Away

During the #DSWorks seminar I learned that the biggest barrier to more higher education opportunities like InclusiveU is money (isn’t it always?).

Tuition for InclusiveU can run upwards of $23,000 a year. Medicaid waivers, pell grants, scholarships, and federal financial aid are now available to students with an intellectual disability. Still, the cost can be prohibitive. And starting a program like this takes a lot of advocacy and a lot more money.

For Josh, the experience was priceless!

He learned to live independently and hopes to use the skills he learned in his eventual career: “I want to work at pop concerts (Lady Gaga, Ke$ha) working on live audio, lights and special effects. I would like to also work on a TV show specifically a reunion show (Brady Brunch, Full House) being an assistant.”

“I will miss the people at Syracuse University and InclusiveU when I move to Florida.”

Congratulations Josh! You’re an inspiration. Inclusion Evolution and the Down syndrome community wishes you the best of luck!

Do you know someone with Down syndrome that is attending college? Tell me about your experience below or private message me.

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Thank you for your response. ✨

May 22, 2017May 21, 2017

“Wonder” Book Review: How Loving Someone with a Visible Disability Forces You to Stand Out

The old adage “don’t judge a book by its cover” never resonates with me more than after I had Troy, my son with Down syndrome.

I’ll be honest, I’m a conformist. A follower even. I’ve blended my whole life. I was never the richest kid, or the smartest kid, or the prettiest either.

But what happens when you can’t blend, because you were born to stand out?

My Troy stands out. His visible disability brings instant judgement wherever we go:

From fellow moms: “Can he climb those playground stairs?”

From other kids: “Troy, let me help you with that.”

From his teachers: “I am shocked that he’s potty trained and knows all his letter sounds! But we’re still not sure he can keep up in higher grades. May be you should consider a resource room.”

Even from sweet grandmothers: “Oh, those children are always so happy. Your son is an angel sent from heaven!”

These comments are all well-meaning, which is what makes them sometimes hurt the most.

In my experience, I can more easily ignore and shut out the uneducated jerk who treats Troy like the plague.

It’s the good intentioned comments that I receive on a daily basis that weighs me down. I at once want to hug them for their desire to “want what’s best for Troy,” and punch them for instantly and subconsciously assuming “he can’t.”

Their comments often catch me off guard, because 99.9% of the time ALL I SEE IS TROY—NOT Down syndrome.

It’s a constant internal struggle.

That’s why I simply adore a recent pick by my beloved book club called “Wonder” by Raquel J. Palacio.

It’s a pre-teen book (one of my personal fav book genres) about a boy named August (“Auggie”), who has a severe facial deformity. At 10-years-old he leaves the decade-long safety of his homeschooling career to enter a private middle school.

You can imagine the drama that ensues.

This thought-provoking, witty, and eloquently written book will have you reeling, especially if you’re directly connected to someone with a visible disability or just different.

Auggie is introspective, vulnerable, and hilarious.

The book starts out with Auggie declaring “I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.”

He’s not a novel device or token disabled kid. Neither are the other characters, which I found especially fascinating.

There’s characters in the novel that never come to accept Auggie, or see him as anything other than “other.” But there’s also truly inspiring friends, who are amazing because they learn to see Auggie for who he truly is: a smart, funny kid.

I cried while reading the perspective of Auggie’s parents. They at once want to shield their child from this brutal world, but also push him to reach his highest potential. Any parent can find commonality in their story.

And the perspective of Auggie’s sister, Olivia (“Via”) particularly stuck with me.

I worry about the impact of Troy’s disability on my typical children, as much as I worry about Troy.

Will they resent Troy, or my husband and I for the extra care that Troy sometimes needs? Will they be bullied, because their brother is different? Will this visible disability ruin their life?

Via taught me to take a deep breath, and embrace the mess that is life.

Yes, she does some time resent her situation (don’t we all at one time or another), but she’s the only character who somehow inherently embraces her brother and pushes him to live life like no one else.

Get this book! Have kids you know read it. You won’t be disappointed!

The movie version, starring Julia Roberts, Jacob Tremblay, and Owen Wilson, was supposed to come out this past February. It has been postponed to fall of 2017.

I “wonder” if viewers will be able to embrace this movie, understand it’s impact, and not judge a book by its cover.

May 17, 2017May 17, 2017

Born This Way: Adult Self-Advocate Gives Hope that the Seemingly Impossible Can be Reached with the Right Motivation

Like 40% of individuals with Down syndrome, my son Troy has Childhood Apraxia.

It’s a motor speech disorder in which the brain has trouble planning to move the body parts (tongue, lips, jaw) needed for speech (see the video at the end). Some days I feel like Troy will never be understood by anyone outside of our immediate family.

But then I was lucky enough to meet Sean, from the Emmy Award winning reality television show, Born this Way.

We both decided to advocate on Capitol Hill this past April at the Buddy Walk on Washington, and I got to have dinner with him and his mom. This mom-son duo is a formidable force!

Lower right: Sean with his mom, Sandra, and California Congresswoman Maxine Waters

I was a bit star-struck! I mean, here’s a guy that’s co-starring in an award winning reality show entering its third season, and he has Down syndrome!

But I was even more inspired when Sandra, Sean’s mom, told me that Sean has Apraxia too, and she says “It was not so long ago I had to translate everything Sean said.”

How then, is it possible that Sean is on television, making celebrity appearances, and booking regular speaking engagements?

It’s because Sean dreams only one way:

BIG!

“I want to buy a house at the beach with a pool, a bowling alley, a movie theater and a man-cave in the basement.”

“I want to go on a date with Megan Trainor.”

This is how he opens his speeches these days. With what he calls his “crazy dreams.” Then he has the crowd repeat after him “It could happen!” In which he replies, “That’s what faith can do.”

These phrases are so well-known by fans of Sean’s that they’ve inspired Seanese —Sean’s newest business venture. Sandra hopes it won’t be lost on readers that “less than 5 years ago he was unintelligible, and today we celebrate his speech by immortalizing it on swag.”

But here’s what those with Apraxia and their loved ones need to know:

Sean’s hard-won success is a marathon, not a sprint.

Sandra never dreamt that Sean would be on television, but he did. He was involved in drama throughout school, and auditioned for a sitcom while in community college. Sean was confident that he would get the role, but his mom was honest with him: “I couldn’t understand your words, and if I couldn’t understand them, I know they couldn’t.”

But it seems this small failure served as further motivation for Sean. He took his mom’s advice and worked tirelessly on his intelligibility at every chance. Now look at him!

Born This Way opened doors for Sean once thought impossible. And has also helped Sean perceive himself in a new way.

In the first season, Sean was the self-proclaimed “Ladies Man.” But after watching himself on the show, he realized the saying’s true intent.

Sandra says Sean has “grown so much by watching himself on TV and learning from his mistakes in an authentic way.”

Sean’s also living in his own apartment, subsidized by HUD. He has a roommate who is a live-in-aide.

He had a job at Home Depot, but it didn’t give him the social outlet he was looking for. He loves kids, and is now starting a job at a trampoline park working with children.

Some within the Down syndrome community criticized Born This Way for only showing what they say are “high functioning” individuals with Down syndrome. But Sandra argues that Sean is not the smartest, or most intelligible. In fact, she says the show uses some pretty “creative captioning” so the cast can be understood.

What she says is unfair are the differences in adult transitional services throughout our nation.

It’s obvious the cast members benefit greatly from California’s system, which has no waitlist for job coaches and supported living services.

Sandra also makes an important point that “if we criticize television shows like Born This Way and stop watching it, we’ll lose the opportunity to open doors for all individuals with Down syndrome.”

Both Sean and Sandra have sage advice for parents like me and kids like Troy, who seem to not yet see the forest for the trees:

Sandra says it’s important parents find a speech pathologist and occupational therapist who are knowledgable in the therapy techniques for Apraxia, and practice with your child every day.

But more important “find out what your young adult LIKES, and help them learn about the types of jobs they can do to fulfill their dreams.”

I want Troy to have the best services and therapies to address Apraxia, but what Sandra and Sean taught me is even more important. If we want our children to be success in school and work, we have to focus on what’s really important: “Have good behavior and listen and be nice to everyone,” Sean says.

The rest will follow with hard work and the right motivation!

Season 3 of Born This Way aired May 16, 2017. You can catch up on Seasons 1 & 2, and watch current episodes here. Sean won’t reveal any real spoilers, but says parents of young children with Down syndrome will definitely want to tune in for a surprise this season.

You can help support Sean in his next business venture at https://seanese.com.

If you’re still trying to understand Apraxia, watch the video below:

May 11, 2017May 11, 2017

$10 Million To be Awarded To Agency that Delivers Inclusive Results for Students with Down Syndrome

Should students with the most significant cognitive disabilities be educated alongside their typical peers?

Evidence-based research and special needs parents overwhelmingly say YES, they should.

Now the Department of Education’s Office of Special Education is awarding a up to $10 million dollars to an educational agency that promises to deliver inclusive results for these type of students.

This is big news for the inclusive education crowd!

The Department of Education is accepting applications from state and local education agencies, as well as non-profit and for-profit agencies until June 16, 2017.

The hope is this competition will help address problems with continued segregation of students with the most significant cognitive disabilities, like Down syndrome.

Here’s what we know: Evidence-based research continues to support and Federal law continues to require INCLUSION. Students with disabilities are supposed to receive a Free and Appropriate Education (FAPE) in the Least Restrictive Environment (LRE) with an Individualized Education Plan (IEP) under the Individuals with Disabilities Education Act (IDEA).

Reality is much different:

The majority of American school children with the most significant disabilities (intellectual disabilities, Autism, multiple disabilities, and traumatic brain injury) continue to be segregated in separate classrooms, schools, and out-of-district placements.

Here’s the other problem:

The evidence and tools for inclusion are available, but real-world implementation and support in schools is serious lacking.

I understand this as a former secondary school teacher. My first year teaching in Virginia was in an “inclusive” setting, but I did not receive appropriate support. My students suffered the most from this lack of support.

When I moved to Utah, students with significant disabilities were sent to special schools; no support needed.

The winning educational agency will receive $2 million federal dollars annually for up to 5 years to implement and sustain inclusive practices.

The competition’s media director, Tina Diamond, told me the Office of Special Education doesn’t want to give limitations to the agency such as exactly how many students they must impact. The agency is not limited to a brick-and-mortar building to implement their strategy either.

But there will be performance goals to sustain the funding, and the OSE has these specific 4 goals in mind:

Increase the amount of time students with significant disabilities are educated in inclusive classrooms.
Increase education engagement of students with significant disabilities (i.e. academic instruction and extracurricular activities).
Increase the quality of instruction through interventions and accommodations supported by evidence.
Supporting districts and education groups in implementing inclusive practices in grade-level academics and extracurricular activities.

The OSE is responsible for funding other inclusive programs like SWIFT Schools (Schoolwide Integrated Framework for Transformation).

Still, Diamond says the OSE continues to see a barrier for inclusion for students with the most significant disabilities.

Diamond says the OSE worked on unveiling this competition for many months, and are excited to finally have it rolled out this year. Applications will be reviewed in August, and a winner is expected to be announced some time in September 2017.

Find out how educational agencies can apply here!