“Faith” in Inclusion Leads Student with Down Syndrome to Make History

A standard high school diploma can seem out of reach for students with Down syndrome. But with inclusion and a lot of hard work, 19-year-old Faith did just that! 

Faith (bottom left) performing with her typical peers

Faith became the first person with Down syndrome to graduate with a regular high school diploma in Martin County, Florida School District. Also unprecedented, she was included in general education throughout her educational career. 

“I’m really happy to graduate with a standard diploma. I learned chorus, I learned drama. I like drama, I like to act. I was in Romeo and Juliet, Wizard of OZ, Beauty and the Beast. I was in Jubilate chorus too. I like all my friends,” Faith says.

Faith was on track to earn a special certificate of completion until 2014, when Florida special education law changed to allow students with disabilities to try for a standard diploma. Students with disabilities can use alternate assessments and something called “access points,” which allows them to access the general curriculum in a modified way with supports. They still must pass alternative assessments and earn enough credits to receive a standard diploma.

The school district told her mom, Paulette, that on top of being the first student with a significant disability to receive a standard diploma, Faith was the first to use the “access points” in a general education setting. “That has always seemed odd to me, that a special curriculum offering access to the general education curriculum would cause the student to be excluded from the gen ed class,” Paulette describes. 

Paulette said inclusion wasn’t easy. She received a lot of push back when Faith entered kindergarten and again as she entered middle and high school. But she always set high expectations and was able to find at least one educator who supported their efforts or had an open-mind.

“At Faith’s first IEP meeting, her preschool teacher remarked that Faith had done well in the preschool, developed friendships, learned the alphabet and how to write her name. Then this wise and wonderful woman said: ‘I am not trained in special education, no one is in our private school. Faith has been successful. Certainly with all the resources of the public school system she can continue to be included with typical children,'” Paulette describes.

Faith (bottom, third from the left) performing with the Senior Jubilates

“At the beginning of 8th grade our supportive inclusion specialist called the high school to tell them to get ready, they would be including their first student with Ds. The ESE director at the high school laughed and told her they didn’t do that. The first year of high school was rocky, but then the woman retired and the new director was fully on board with making history!” Paulette remembers.

Faith’s inclusive experience allows her to be comfortable in many situations. She’s danced and acted alongside her typical peers. With appropriate supports and modifications she dissected a frog in a general education Biology class, which she described as a “yucky experience.”

“I have friends in drama club and Jubilate. I have friends from economics, history, math. I learned all things and got A’s. My mom helped me to learn in other classes,” Faith describes.

“Faith has made a difference in the lives of many typical students over the years. She has changed the attitude of people she has shared the classroom with. They know that although it is challenging, people with Ds can learn and be a valued member of a group,” Paulette says.

Faith is set to begin vocational training at a local hospital with Project Search. Her goal is to be a musical theater actress, but says she wouldn’t mind working in a movie theater for now to earn money. 

Faith’s mom hopes that their story will lead other parents to fight for inclusion. “I really want parents of younger kids to follow the path we have blazed. Faith is a pioneer and I have led the wagon train. I am willing to help parents who want help with IEP meetings or just for a listening ear. I don’t want our experiences to be an anomaly. I want us to be an example of success,” Paulette explains.

As for Faith, she has her own advice for students with Down syndrome that want to follow in her footsteps: “My advice to other kids with Ds is get a standard diploma. Take drama, chorus, English, economics, history. My teachers are impressed with me and my activities. I learned about Beowulf, Hamlet, Romeo and Juliet and I did projects. Read a lot of books. That’s it.”

Faith and her family at graduation. Faith’s mom, Paulette, to the right of Faith.

 

 

 

How Homeschooling is One Path to Inclusion for Some Students with Down Syndrome

Guest blogger, Geralyn Spiesz, shares her thought-provoking journey of homeschooling her son with Down syndrome:

Geralyn with her son, Lucas

In some ways I feel as if I have always been a homeschooler.

My eldest son had an insatiable desire for more information, so evenings and weekends were spent reading, trips to the library, projects, and museums. My next son followed suit and although he did well at school, I couldn’t help notice his interests were not in the books but in experiences. We spent time doing all sorts of things to augment time spent sitting and listening in a classroom.

When Lucas was born with Trisomy 21, I was fortunate enough to find literature very early on from The Institutes for the Achievement of Human Potential. It changed my entire perspective.

I was sold on the fact that I could teach my son to read at 1 year, since reading is sensory and not academic. I could create an environment where every movement he made, every intention he had, would result in success. I could get him to walk and crawl miles everyday to improve brain cross-patterning and speech. I did, and by age 3 it was clear to me that whatever we were doing was working. Lucas was growing, developing, learning, and was very happy!

The idea to homeschool started to take shape and I had a huge advantage. Lucas could already read, spell and count.

Lucas turned 4 on August 30 and I had decided that we would embark on our “Kindergarten homeschool year.” I had nothing to lose. He wasn’t old enough for real kindergarten. If it went horribly I could send him to school the following year.

I poured over homeschool books, blogs, and curriculum, but I never consulted the special needs resources. I figured, all children’s needs were special and homeschool is about tailored education. I just picked and chose materials that I knew would be a good fit.

So, that first trial year, I chose mostly 1st grade curriculum for reading and math. We also did interesting things from history, science, and lots of art and music. Lucas worked on handwriting, as well as his neurodevelopment program and running daily. By the end of that year it was absolutely clear this path was necessary.

I was worried and conflicted about things like socialization. But here’s the thing, inclusion for us is the goal not the method.

Lucas’s academic ability is high, but his processing ability requires improvement to allow him to sit in a classroom and listen. His ability to maintain attention and switch attention must improve before he can sit at the lunch table and follow a conversation. If I forewent teaching Lucas as I knew he needed in a distraction-free environment, while focusing on improving neurodevelopment, he would never truly be integrated into a class.

As an OT I realized that Lucas could certainly learn routines by being in a classroom. Things like staying in line, keeping hands to himself, following the leader, etc., were certainly very important, but when the questions morph from “What color is this?” in kindergarten, to “Why do you think the artist chose that color?” In 3rd grade, the wheels would fall off the cart. Not because he couldn’t learn, but because he wasn’t neurologically ready for that level yet. It would have been like putting a 3-year-old in 3rd grade. I could not sacrifice a relatively good academic trajectory waiting for his visual and auditory attention and processing to improve.

When the year passed Lucas could handily complete all of the 1st grade work (he was not yet 5). But he still bolted away from me at the supermarket and was not able to attend in a busy environment, further solidifying my decision to homeschool. It would allow me the ability to continue teaching him academics and work on neurodevelopment.

Socialization happens in tons of places.

At parks, at the the grocery store, at home within the family unit, at parties, etc. Socialization is exposure and opportunity. Lucas takes skating lessons, and plays baseball for the town. He is at the park most days of the week and has a huge extended family.

In addition, Lucas attends a learning center for homeschool families twice a week where he takes science lab, Latin, history, and literature. I attend his groups with him as he still is unable to learn in an auditory environment, although we are making progress!

At the time I made the decision to begin homeschooling, I would have been fooling myself to think that my son was neurologically wired for a same-age peer relationship.

Lucas with his older brother, who’s also homeschooled.

Homeschooling with Lucas went so incredibly well, that I pulled my middle son (the one who couldn’t sit still…had a ton of energy…and asked a million questions) out of school and homeschooled him as well. He went from barely proficient in math on the fourth grade standardized test to the 98th %ile the following year. Turns out he was bored. I chose a very aggressive math curriculum that goes quickly, with repetition built in, and he took off. He is going into 8th grade and this will be our last year of homeschooling. He will go to the same high school as his older brother. He needed to learn the way he was wired to learn, the same is true for all children with or without an extra chromosome.

Lucas and I work very hard in school and his neurodevelopment program. He is just finishing 3rd grade. In some areas he is working at a late 4th grade level, and others at a late second grade level. If we’re honest, this this actually pretty typical of all of us. we are really good at some things and some things take more effort.

Our goal is to homeschool until 8th grade and for Lucas to sit for the entrance exam to the same private high school his brothers attend.

We would like to see him graduate with an academic diploma. We want Lucas to have neurodevelopment to understand sarcasm at the lunch table, and attend to the ping ponging conversation in a noisy cafeteria. Our goal is for him to learn by listening to a lecture instead of having everything in print for him to read. We want him to be happy and achieve all he can to do all he wishes.

The decision to homeschool a child is massive and it’s effects should not be underestimated.

I worry when it takes a long time to get a concept. But I’m getting better at realizing it isn’t Lucas’s inability to learn, it is my inability to teach it using the right method and I need to change my approach. This would not be possible in a classroom situation with multiple children. I also realize that at some point in the future we may have to make a different decision, but for now we wouldn’t change a thing.

Geralyn Spiesz is a passionate homeschooler who created the Facebook page “DSAP Homeschool,” which provides discussion and resources about homeschooling children with Down syndrome. She uses Dr. JoQueta Handy’s Brilliant Learning Program as a framework for her son, Lucas’ learning.

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.

Joe making small talk with Megan

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! 

 

 

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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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: