Tag: inclusion

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Self-Advocate Uses Fame To Spread Message of Inclusion

You’ve probably seen this incredible World Down Syndrome Day PSA. I’ve yet to watch it without smiling and crying simultaneously.

Gorgeous actress and model, Olivia Wilde, spending time with family, working, dating, living an ordinary life. But the voice is not Olivia Wilde’s. And the life it describes is anything but ordinary.

20-year-old AnnaRose is the voice behind the 2016 World Down Syndrome Day PSA “How Do You See Me?”

She says the video perfectly reflects her life of inclusion: “I want people with Down syndrome to be heard and to be treated with respect like everybody else. I think that speaking up is the right way to advocate for people who have Down Syndrome like me.”

The ad quickly became a sensation in and out of the Down syndrome community, but AnnaRose says a more recent accomplishment is what really makes her proud.

“I just graduated from Rowan College in New Jersey, and I’m so excited and proud of myself. I did a lot of exciting things to achieve my goal of graduating.” 

AnnaRose says the best part of college life was being included on campus. “I’m a DJ at the Pemberton Campus at RCBC and I have also worked at the bookstore at the RCBC Mount Laurel Campus,” she explains.

This incredible self-advocate didn’t stumble upon fame and inclusion at college by accident. AnnaRose says she and her family have worked hard from day one to make her a fully included member of her school and community. 

“I have always been in inclusive classes, ever since I started school.  My classmates have helped me with school projects, sharing notes, following along, and learning acceptable behavior.  I also have had to work sometimes to get my teachers on board with MY educational goals.  I had to show them that I want to learn. In 2014, I graduated from high school and got my diploma.  I was a member of the National Honor Society and an active member of many clubs in my high school,” AnnaRose describes.

She’s also been included in sports teams throughout her childhood, and in 2015 she was invited as a VIP guest of the ticker tape parade after the USA Women’s National Soccer Team won the Women’s FIFA World Cup.

AnnaRose takes her role as self-advocate seriously.

I had the privilege of meeting her this past April, as we both advocated for the rights of individuals with Down syndrome on Capitol Hill. There, she spoke with Congressmen about issues that impact her.

“For all my life, in my experience, inclusion works. Studies prove that inclusion works for everyone. But, there is still a lot of work to be done,” she argues.

AnnaRose says she is not the exception to the rule. “Inclusion is for everyone,” she argues.

For those who want to follow her path of inclusion, AnnaRose has this advice: 

“In high school, you have to take serious, inclusive classes. Academics comes first. You have to be prepared to work hard in college, and that starts in middle and high school, even elementary school…

You should also take classes that you are passionate about so that in college, you will know what you want to learn more about. I took TV Technology in high school, and then interned in that classroom in college for my major, Entertainment Technology: Video and Digital Media Production. You should also make friends who support your goals, and who you can support, too. I have friends on both sides: with and without Down syndrome. That is important.”

The recent college grad now plans to look for a summer job in filmmaking, radio, or television. She’ll further her education this fall. ” I’m going to Rider University to continue my degree in Filmmaking, TV and Radio,” AnnaRose explains.

And while her ultimate dream is to work on or behind the silver screen, that dream also includes something most of us take for granted.

“I dream of having a strong group of supportive friends, and of being treated with respect by everyone I meet and work with.” 

Congratulations to the amazing AnnaRose! Inclusion Evolution and the entire Down Syndrome community applauds you! You’re an inspiration and we can’t wait to follow your journey of inclusion!

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Inclusion for Individuals with Down Syndrome is Just a Click Away

Down syndrome comes with a lot of assumed can’ts and won’ts. But the world often misses the incredible way individuals with Down syndrome adapt. With the right supports, most things are possible.

Us with my 85-year-old Grandmother

Today, more than any time in history, a life of independence and self-determination is just a click away.

My 85-year-old grandmother laughs that her 4-year-old twin great-grandsons, one with Down syndrome, knows more about modern life than she does. And in a way, she’s right! Troy gets very limited screen time, but has still managed to master his Great-Grandma’s iPad. Technology is intuitive to all young people today; children with Down syndrome are no different.

I can envision Troy living on his own one day, driving to work on time, shopping, exercising, and loving life all with the help of modern assistive technology.

The future is here, and it’s revolutionizing how people with disabilities live

Many of you may have paused when I said “driving to work,” and rightly so. In reality, the likelihood of someone with Down syndrome earning their driver’s license is extremely low. I’ve read a handful of success stories, but by the time Troy’s old enough to learn to drive that number could be higher because of driverless car technology.

This is no longer the stuff of sci-fi movies and dreamers. Tesla recently released their mid-level, $35,000 driverless car, and Nissan promises a car with “autonomous drive technology” by 2020. Google’s second generation car doesn’t even have a steering wheel or brake pedal. Google says in order for people with disabilities to benefit from this type of technology, the car needs to be completely autonomous. Regulators and society in general will have to consider the ethics of this new technology, but that debate is already beginning and there’s no stopping progress.

Inclusion Through Innovation

If driverless cars seems too far-fetched for you, there’s a multitude of assistive technologies that you probably use every day that can help foster inclusion for individuals with Down syndrome. Everyone’s got a smartphone, and that alone has endless possibilities for supporting independence and inclusion.

Got a problem or an accommodation, there’s an app for that:

Alarm Clock

Voice to Text, Text to Voice

Sign Language, iSigns

Navigation

GPS technology

screen magnifiers

Word prediction

Social networking

Tracking Behavior

Organize Personal Tasks, iPrompt

Steve (left) lives independently with his roommate (right)

Disability advocate and Mom-extraordinaire, Ricky Sabia, says her son, Steve’s smartphone was a life line in high school and is now crucial to his independence. “I don’t know if I would have survived him taking public transportation in high school if I couldn’t track him on “Find My iPhone.” Believe it or not, the biggest tool Steve uses now is the alarm. He sets it to remind him of when he needs to leave, when he starts a break, comes back from a break, leaves for the metro—the alarm is for so much more than getting up in the morning,” Sabia explains.

A college student with Down syndrome wants to attend a general class, but can’t take notes. No problem, Google Glasses can record the teacher’s lecture. Grade school students with disabilities could wear the glasses to the zoo and get real time facts about the animals they see.

An iWatch could track a self-advocate’s calorie intake and heart rate, all while listening to music and calling a friend.

I love how all these technologies blur the line between assistive and general consumer technology. This is Universal Design for Learning at its finest. Read my post about UDL here. UDL means providing flexible technologies so that everyone can learn. Typical people use the technologies above every day, and may not even consider how they could help someone with an intellectual disability be better included. The possibilities are endless!

What technologies does your loved one with Down syndrome use to lead a more inclusive, independent life? Share below.

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How Having a Son with Down Syndrome Pushes Me to be “That Mom”

I’m becoming “that mom.” You know the one: 

The one who honestly thinks her child would be an asset, rather than a liability to your typical kid’s classroom.

Who thinks her son doesn’t have to “keep up” to be included.

The one who cares when you say “retarded,” even when you argue that you “didn’t mean Troy.”

Who writes all those annoying political posts about how Medicaid cuts would impact Troy, and take disability rights back a generation.
The one who thinks inclusion for her son is the civil rights debate of our time.

Who shouts that separate is NEVER equal to anyone that will listen.

How dare she! The audacity of it all! 

The evolution to becoming “that mom,” isn’t an easy one for me. I’ve had to adapt to my new environment. I used to be so easily swayed.

First, I was a journalist who always tried hard to be unbiased. Then, I was a teacher who ran my classroom like a well-oiled machine, not thinking much about the absence of any kids with disabilities in my school.

But what I now realize is if I don’t stand for Troy, who will?

Our culture has yet to embrace full inclusion of my son. Sure, there’s been good progress, but you know how I can tell we’re not there yet? I can tell when I take my twin son’s to school, and one can enter a regular kindergarten class no questions asked; while the other must fight to earn a spot in the same class.

Federal law protects my son from this culture of exclusion. IDEA says he deserves an individualized, free, and appropriate education in the least restrictive environment. Still, these laws are not enforced the same across our nation.

Federal courts have ruled “Inclusion is a right, not a special privilege for a select few” in Oberti v. Board of Education.

Still, my friends tell me how their kid is doing laundry and vacuuming in primary school, instead of learning to read next to their typical peers.

At the Buddy Walk on Washington with self-advocate, Kyle McKay

So, instead of just hoping my son learns next to his brother, I’m applying to the Special Education Advocate Training through the Council of Parent Attorneys and Advocates. I will be an expert in the laws that protect my son in school.

Not only do I post on Facebook about legislation that impacts my son, I attend the Buddy Walk on Washington to actually meet with my legislator and tell them my son’s story.

Instead of waiting until Troy turns 21-years-old to think about what job he might get, I’ve started a local communications workshop for adult self-advocates to learn about their successes and challenges in employment.

Obviously, you don’t have to go this far to be “that mom.” I’ve seen moms feared, misunderstood, and even pitied for a lot less.

I surprise even myself by my moxie.

But I’ve also gained a new clarity of my life’s ambition. Because if I don’t stand as an advocate for my son now, how will he ever know how to advocate for himself in the future.

If I don’t stand for something, I’ll fall for anything.

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Why Your Child’s Teacher Should Be Trained in Non-Violent Crisis Intervention

So, wow! My recent post about an 7-year-old old boy being dragged by his teacher really hit a nerve. Many of you were shocked to see the video, and thankful for tips on how to help prevent this type of abuse.

Others responded that a No-Consent Letter alone is ineffective if school personnel are not trained properly in handling crisis situations. I wholeheartedly agree! We may disagree as to whether restraint and seclusion techniques work, but I think everyone can agree that crisis prevention training can help decrease these type of incidences.

As a teacher, I was never offered any crisis intervention training. And after digging around, I found that I am not alone.

Just as there are no federal laws restricting the use of restraints and seclusion, there is also no mandate for crisis prevention training across the country. School districts lack the money it takes to properly train their personnel in non-violent crisis interventions. This will only get worse if Title II, A is cut. Title II, A is federal funding for professional development, but the Trump administration wants to scrap it completely.

Another problem is the least qualified staff are often paired with students who have disabilities and the most challenging behaviors. And now Every Student Succeeds Act no longer requires teacher to be “highly qualified,” which will likely make matters worse. The result is hundreds of cases of abuse or even death related to using restraint and seclusion techniques, according to federal figures.

Advocating for Better Crisis Prevention Training

What can you do as a parent or teacher to prevent an incident like the one in above?

First, advocate for a Non-Violent Crisis Prevention Intervention program in your school district: Find out what, if any, behavior intervention training your school staff receives. At the very least, your child’s school should have access to a behavior specialist who’s trained in non-violent crisis prevention intervention. Your child should have a Functional Behavior Assessment as soon as a problem arises. Don’t let the situation get to crisis mode.

The Crisis Prevention Institute is an international organization that has provided training to teachers for more than 35 years. Their Non-Violent Crisis Prevention Intervention includes one-day seminars that help teachers identify how behavior escalates and how to respond in appropriately during times of chaos.

The lead instructor, Maria Navone, is part of a fabulous podcast about advocating and carrying out non-violent crisis prevention intervention. She stresses that all behavior is communication. “Being able to step aside and not take this acting-out personally helps you think more clearly about what your intervention is going to be,” Navone explains.

The institute also has a 4-day Instructor Certification program. They offer on-site and online training, but it all comes with a hefty price tag. That’s why it’s important to also advocate for funding for teacher training.

Call, email, and tweet your Congressmen: Tell them not to cut Title II, A. It seems “professional development” has become a dirty word. School districts have a hard time proving the effectiveness of teacher training, and politicians can’t stomach the cost. But it’s important that Congressmen know that Title II, A could be used for non-violent crisis prevention training for teachers. If we have one less abused student, then the tax money spent is worth it.

Contact your Congressperson here. 

Here’s the sample tweet I sent my Congressmen: @RepMikeTurner #TitleIIA is critical for school leaders and principals to do their jobs effectively; cuts threaten this ability. Get a sample email or call script here.

Also, advocate at the local level: You may have heard the saying “all politics is local,” and when it comes to education this is very true. Most school funding comes from local property tax. Only 5-10% of school funding comes from the federal government. That’s why it’s important to get involved with your child’s school board and advocate for better training in crisis prevention methods.

 

 

 

 

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Adult Twins, One with Down Syndrome, Inspire Hope

Our story of advocacy starts with two babies who shared a womb, born just seconds apart, whose bond is unbreakable.

Whose expectations at home are the same: respect, hard work, and love. The only difference between the two is about 4.36 seconds…

Twins really catches people’s attention. So having twins, one typical and one with Down syndrome, can often feel like a circus.

Troy (back) with his typical twin, Hunter (front) at 8-months-old

A normal trip to the grocery story with my twin babies garnered constant attention. If I had a dollar for every time someone tells me “You have your hands full,” I would actually make a decent wage at this stay-at-home-mom gig. If I had a dollar for every time someone stares extra long at both boys, trying to figure out how they’re actually twins, I could retire!

The likelihood of having twins, one typical and one with Down syndrome, is 14 in a million. If families blessed enough to have a child with Down syndrome take the moniker the “Lucy Few,” then we’re the “Lucky Ones.” I really should start playing the lotto (LOL)!

That’s why meeting other families with twins, one with Down syndrome, is so special. You feel like you’ve met a secret tribe that fully understands the blessing, and sometimes curse, of having children the same exact age with such different developmental paths. If comparison is the thief of joy, imagine watching your son with Down syndrome struggle to do things that come naturally to his twin. Still, it also comes with many surprising perks.

We never take life for granted, and both our boys are true fighters with an empathetic spirit.

You can imagine my excitement then to meet a set of successful adult twins, a typical sister and a brother with Down syndrome. I got a chance to see 39-year-old Katie and Kris Faith at the National Down Syndrome Convention this summer in Sacramento. Theirs is also a story of advocacy that has led to a life of self-determination and success for both twins.

Katie Faith Lingo and Kris Faith

“When we were born in 1978, our doctor was not encouraging. He suggested to our parents that they did not have to take Kris home. But leaving Kris at the hospital was NEVER an option for our family,” Katie Faith Lingo says. Undoubtedly, the Faith family decision to keep Kris was the exception rather than the rule at that time. However, Katie says her parents were adamant that what others saw as a burden, would end up being a blessing.

An Inclusive Family

Today, Kris works at California’s Department of Developmental Services as an office aide after attending the local city college. His sister, Katie, has a Master’s in Special Education and is an Inclusion Specialist at their local school district. It’s obvious that Kris’ disability led them to a path of service, but how did they get here?

The twins say it was their parents’ openness and determination to include Kris in every aspect of life. “Kris was accepted and loved. He was also expected to be a contributing member of our family with the same chores and responsibilities as all his other siblings,” Katie describes.

And it wasn’t always Katie who protected Kris. “I remember finding Kris pinning a guy to a locker in high school. After defusing the situation, I asked Kris: ‘what’s going on? Was he bullying you?’ Kris said ‘no, he was making fun of you!” Katie remembers.

At a time when inclusion didn’t exist, Kris’ parents pushed for him to be mainstreamed in his neighborhood school, sharing classes with his typical peers. “In middle school I earned the highest award, the Principal’s Award for Courage and Determination. I was also the ball boy for basketball. It was fun!” Kris describes. He went on to graduate from high school, and enroll in both general and special education college courses.

It’s obvious the doctors were wrong about Kris Faith. “Kris ended up influencing the path of my life, and has given our family the unique ability to see individuals with disabilities as more alike than different,” Katie explains. “I’m so glad I was born into a loving family. I’ve been given many gifts. One day I dream of being a famous author or song writer, but I feel like I’m already living the dream!” Kris exclaims.

The Faith twins’ story is such an inspiration to families like ours. They remind us that this unique road is worth it, and advocacy matters. Thank you Kris and Katie for sharing your story!