our family Archives – Page 3 of 3

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 9, 2017August 9, 2017

Enjoying the Quiet Before the Storm

A typical week for me may seem like a hurricane to others. It includes 24-hour care of my three kids under 5-years-old, at least three private therapy sessions for my son with Down syndrome, typically one medical appointment, swim lessons, preparing 3 square meals a day, and keeping house (whatever that entails in 2017 LOL!).

I do this with no family support system (the closest lives 500 miles away), and my husband works 80+ hours a week as an Emergency Medicine resident (although he’s amazingly helpful even with his insane schedule).

Looking at our crazy life, one would NOT imagine these days are the sunniest. But in many ways, this is the quiet before the storm!

As the school year fast approaches and my twin boys enter their third and final year of preschool, I realize this is the last year our young family will enjoy the safety of naivety. I have one more year to bask in the glory of unasked questions, the freedom of play, and power of a small circle of family and friends who accept us for who we are: PERFECTLY IMPERFECT!

Troy (back left) enjoying life with his typical twin, Hunter

That’s one more year of easy-peasy IEP meetings, no homework or standardized tests. One more year of kids playing with Troy on the playground without asking why he’s so little or can’t talk like them. One more birthday where the boys want a party with the same friends, same theme, and same gifts. One more year where my boys think of themselves as they are: TWINS.

Next year, my first born sons will start “real school”, and boy has it changed a lot in the generation since I attended kindergarten. You’ve likely heard the news: kindergarten is the new 1st, or is it 2nd grade.

As we peacefully go through life in the safety of our home, I often worry if Troy will be ready. Of course he will, whether I’m ready or not. I also worry that his typical twin, Hunter, will struggle with the confirmed knowledge that Troy is indeed different. The words “Down syndrome” come up a lot in our house, and even though Hunter uses these words freely in conversation he has yet to assign it to his twin brother.

As a parent of a child with a disability, I’ve practiced in my mind how I might explain this revelation of difference to my typical children. Will I choke when the time comes to pass on this sage advice?

My 2-year-old typical daughter, Cora, is the perfect playmate and foe to Troy. Theirs is a love-hate relationship. But I’ve noticed lately she’s been innately mastering milestones that Troy is just starting to find easy: jumping, verbalizing complete sentences, dressing independently.

How will I navigate the rough seas of a younger child surpassing an older one?

Still, these intimate family dynamics will likely not be what causes the biggest waves a year from now.

Instead, it may be the storm outside our doors.

It may be the teachers or school administrators who deny equitable education to my son with Down syndrome.

The older students who ask Hunter why his twin can’t do the same things he can.

The sports coaches who can’t find a spot for Troy to play on a peewee team.

The parents who remark about how “cute” Troy is, while quietly worrying about the impact of his presence in their typical child’s class.

They say meteorology is the only profession where you can be wrong 50% of the time. So, here’s hoping my predictions for the storm to come are unfounded!

Even if my predictions do come true, I realize now it will be ok. We’ve been through a lot as a family, even before our kids were born. Even through rough times, we’ve held tight to each other knowing we’d see brighter days.

And what I’ve learned and hope to instill in my children is the sunniest path isn’t always the prettiest. Sometimes the storm helps you put life into perspective.

Sure, if I we could have it all, I’d wished my kids easy, fun-filled lives, full of lots of interesting friends, successful careers, heaps of money, and perfect marriages. But if we can’t have it all; If I can only choose a few, EASY wouldn’t make it on my wish list.

Instead, I’d rather my children live an authentic life, where they feel compelled to stand up for what is right and good in this one life we’re given. This is the rainbow after the storm in a life connected to Down syndrome. We are the lucky few!

July 3, 2017June 27, 2018

This Land is Made For My Son with Down Syndrome, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a special needs mom and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son, Troy, who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son, Troy, was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat, and one of the most important was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash strapped states would likely cut Community and Home Based programs first.

Troy playing baseball with his typical peers

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neuro-typical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood Medicaid provides job training, transportation, and independent living supports through local and state run programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121 , remind them how far we’ve come as a nation in the treatment of our most vunerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.