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.

September 3, 2017September 3, 2017

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.

September 1, 2017September 2, 2017

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.

“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!

August 29, 2017August 29, 2017

Communication is Key to Self-Advocates’ Pursuit of Goals

This summer I started a “Self-Advocate Communications Workshop” in my local area, and I’ve been blown away by the progress of the teens and adults with Down syndrome.

Honestly, I didn’t have many expectations for the workshop. I just wanted our local self-advocates to better represent themselves and the organization that supports them (MVDSA).

But watching our group of self-advocates rehearse for their role at our 15th Annual Buddy Walk literally brought happy tears to my eyes. I know it sounds cheesy, but they are really starting to act like self-advocates by communicating their wants and needs to people outside their family.

Our mantra for the workshop is “I Can!”

Many of our self-advocates started the workshop apprehensive to speak in front of strangers, to look someone in the eye, and tell others who they are and what they stand for. The “I Can!” mantra helped them put into words their goals for the Buddy Walk and life in general.

In our last workshop before the Buddy Walk our Theater Educator, Stephanie Radford (heavy on the “RAD”), brought in strangers to test the self-advocates’ new communications skills.

They’ve been working on:

conversational skills
non-verbal communication skills like eye contact and body language
improv skills
speech skills

The self-advocates have warmed up to us over the last three months, but we wondered how they would perform in front of complete strangers. We set up a practice advocacy table with games and brochures, like they’ll have at the real Buddy Walk.

Practice with strangers to prep for the Buddy Walk

The first interaction was a bit forced, but as the strangers started asking the self-advocates questions about their life everyone started smiling and having a good time. The self-advocates used what they’ve learned about eye contact and reciprocal conversations to engage these strangers they’ve never met. I was impressed! They know that people may have a harder time understanding them, but still they advocated for themselves and got the job done.

I can’t wait to see how they do September 16th at our Buddy Walk!

They’ll be the ambassadors of the Miami Valley Down Syndrome Association; running our advocacy table and introducing national, state, and local politicians to Buddy Walk attendees.

Self-Advocates with our volunteer actors

August 28, 2017August 29, 2017

Serving Up Sportsmanship Through Inclusive Tennis

Tennis requires a fast response time, hand-eye coordination and a lot of stamina. The non-profit, Buddy Up Tennis, is serving up these skills to athletes with Down syndrome and creating a community of tennis lovers.

Serve it, smash it, win it, love it!

The 90-minute weekly session I watched locally would have anyone’s heart rate up. More than 20 athletes with Down syndrome teamed up with “buddies” who also enjoy the sport. There was a half an hour of high-intensity calisthenics, another half hour of basic skill building, and then time to play the game.

“Buddy Up Tennis is my favorite MVDSA (Miami Valley Down Syndrome Association) activity. My buddy, Jeff, is so funny and I accidentally hit him with the tennis ball a couple times this Saturday but he just laughed,” explains athlete Walter May. Buddy Up Tennis even led to a job for May at the local tennis club.

The non-profit was started in 2008, when an Ohio mom, Beth Gibson, was playing tennis with her typical child and noticed her 3-year-old son with Down syndrome loved watching them play. “Will was always fascinated with tennis. Staff members at our tennis club soon volunteered to teach tennis to Will, and researched techniques for teaching children with Down syndrome in order to do so. As a result of this research, the need was identified for an organized tennis and fitness program for individuals with Down syndrome,” Gibson explains.

No experience is required and all individuals with Down syndrome 5-years-old and up are welcome to play. The program teaches the following skills:

specialized training in the fundamentals of tennis
improvement in muscle tone, core strength, agility, coordination skills
opportunities to expand social and emotional skills through sportsmanship and team building
connection to the Down syndrome community in your area

Buddy volunteers are at the heart of the Buddy Up Tennis program.

The buddies include a combination of tennis professionals and typical peers who love the game. Anna Jones, head coach for Dayton’s Buddy Up Tennis says the local group has a strong following. “It’s a great opportunity for everyone involved,” Jones says.

My Dad is visiting from California, and is an old tennis pro from way back. He was chopping at the bit to get out their and play. By the end, he’d made fast, new friends with 14-year-old Aljoon, who happens to rock an extra chromosome. “What an awesome program! I can’t wait for Troy to be old enough to play. Tennis is a great sport and these kids are gaining life-long skills they can use to stay active,” my dad happily describes.

In 2016, the United States Tennis Association named Buddy Up Tennis the “Adaptive Tennis Program of the Year.” Today there are 17 locations throughout the nation from Ohio to Texas.

Resources