A Mother’s Day Wish

May 8, 2018 by Courtney

These are the messy years of motherhood for me.

Strips of paper with scribbles on them are strewn about the house. So are wet socks, dirty diapers, overly-loved books, and legos.

My 3 vivacious children create such a constant eruption of clatter that the neighbor often comments on the chaos.

These may also be some of the most magical years of motherhood.

My type-A personality and independent spirit sometimes prevents me from fully embracing the mess that is motherhood. Still, I’m starting to realize my magical days may be numbered.

Our son, Troy, has Down syndrome.

We talk about Down syndrome often in passing, but it enjoys a backseat to the craziness of having 3 kids under 5-years-old.

Troy’s typical twin brother, Hunter, seems immune to the term. Our baby girl, Cora, blissfully loves and hates Troy in any given moment throughout the day.

We live in a bubble. A safe and simple safe-space.

In our day to day life, no one seems to care about Down syndrome.

We love Troy; he loves us. It’s that simple.

But children grow, and life gets complicated.

Down syndrome morphs into school placement, IEPs, LRE, FAPE, inclusion or exclusion. Kids question. Teachers negotiate. Parents complain. Our family bubble takes on a slow leak.

So this Mother’s Day I wish to cherish and immortalize these days.

I wish to remember these days as I fight to have Troy included in school, community, and work. The simply messy days where everyone is ignorant to the brutal world that sometimes overtakes unique families like ours.

These are the days!

How My Twin Sons’ Tee-Ball Games Became Great Practice for Inclusion

April 23, 2018 by Courtney

Like many 4-year-olds, my twin boys, Hunter and Troy, love baseball! But when it came time to sign them up for tee-ball, I couldn’t help but be anxious.

Typically, parents wouldn’t bat an eye at signing their twin boys up for the same tee-ball team, but our situation is not so typical. Troy has Down syndrome, and I wasn’t sure how he would be received.

Should I call and tell the coach that one of my boys’ has a cognitive disability? During the first practice should I describe Troy’s low tone, and how it may impact his ability to keep up? During the games should I apologize for my son’s performance?

In the end, I didn’t say anything.

We play backyard baseball all the time. Troy is as good, if not better, than his typical twin brother at hitting, throwing, and catching the ball, which is to say they both suck as much as any 4-year-old that has never played. I hoped his team would accept him as any other first-time player.

We showed up to the first practice, and I could tell Troy was really nervous. The fact is, even though he’s as good as any other kid his age, he hates crowds. I hear about other kids with Down syndrome loving the spotlight. Troy is the opposite. If you laugh or cheer at his successes, he shuts down. I’m not sure if he thinks people are laughing at him, or if it’s too much sensory overload.

His seemingly lack of interest in the game was predictable, but still bummed me out. I wanted his team to see the enthusiastic ball player I watch in our backyard. I did mention to his coach that Troy has Down syndrome, and he may or may not decide to play. “That’s ok, right?” I asked with bated breath.

Coach Kyle, a laid-back father of two, said “This is my first time coaching. I think we’re all nervous. Let’s give him some time to get use to his team and the game.”

This is inclusion at its finest, and Coach Kyle seemed to come by it naturally. There was no hesitation to include Troy. Just an open-mind, and support if needed.

I wish I could say the team’s acceptance of Troy made his apprehension to play go away. It didn’t. He practiced with the team, he even played the field a few innings each game, but when it came time to hit the ball stage fright took over.

It took 5 games for Troy to finally hit the ball. But when he did you could see the pride and pure happiness in his face!

More importantly, you could see the excitement in his teammates and their parents’ faces! They were genuinely excited to have Troy as part of the team, and more important see him succeed.

One particular player, 5-year-old Michael, always made a point to talk to Troy during the games he didn’t play. When Troy played his first full game, you could see the impact it had on Michael. He was so proud of his friend.

Although most of the kids on Troy’s team are too young to understand Troy’s difference, there’s still an important lesson to be learned by his presence. I know these sports encounters will become less as Troy gets older. We expect that Troy will play on typical sports teams, as well as in the Special Olympics. But its these early encounters that change perceptions of individuals with Down syndrome, and opens doors for Troy later. His teammates will one day be employers, teachers, or friends that will remember that Troy is more alike than different.

By God’s Grace: One Mom’s Mission to Make Catholic Schools More Inclusive

January 26, 2018 by Courtney

Patrick was born 17 years ago with Down syndrome. At 3 he battled leukemia and won. But none of this scared Patrick’s mom, Beth, as much as the prospect of Patrick being excluded from their community; especially their religious community.

Patrick, center, with his family. His mom, Beth, is top right.

“I can remember a parishioner with Down syndrome in my Catholic parish growing up,” Beth says. “My mom used to say ‘it’s so sad,’ every time we saw him.” Ever since then, Beth says she felt this unusual sense that she would be touched by disability.

Beth with Sara today. Sara is now 32-years-old.

She later went on to teach a young girl with Down syndrome in her regular general public education classroom in the 1990s. “Sara was my teacher. She was so capable, and so amazing. It was my bigotry, my stereotype, my unknowing that got crushed daily by Sara’s will to learn and be included,” Beth explains.

“People with disabilities are a gift for the family and an opportunity to grow in love, mutual aid and unity.”- Pope Francis

When Patrick was born, Beth faced the typical medical model of disability: “They put a ‘no visitors’ sign up on my hospital room door, and everyone seemed so sad. There was no celebration.” But her experience with Sara taught her that her son shouldn’t be feared or ignored.

“I had this crazy familiarity that I knew him from birth. I showed my husband our son and said: ‘This is Patrick. He has Down syndrome, and he is just as he is meant to be’.”

Read Related Post Here: How My Son with Down Syndrome Pushes Me to be “That Mom”

Patrick, center, with his older sister and brother

Patrick’s family is completely immersed in their Catholic community. Living only six houses away from their local parish, it seemed natural that all the kids would attend school there.

“Since I taught a child with Down syndrome before, I knew it could be done and realized how life changing it was for teachers and students.” Beth approached her local parish and received their blessing to enroll Patrick in Kindergarten.

But Patrick struggled in kindergarten. “His teacher didn’t believe he belonged in her class,” Beth explains. Beth started attending the Network of Inclusive Catholic Educators (NICE) and got Patrick a full-time aide.

Read Related Post Here: What I Should Have Asked When My Son was Born With Down Syndrome

Soon Patrick thrived: “He learned to read, and made great growth. His teachers were astonished, and it was wonderful to see what grace Patrick’s presence brought to our school.”

Beth realized she wanted the same experience for other Catholic families. She started a website to give parents “what I always wished I had when Patrick was entering school.” That led to a non-profit, The National Catholic Board on Full Inclusion, which promotes and supports Catholic schools who include students of all abilities.

“An inclusive education finds a place for all and does not select in an elitist way the beneficiaries of its efforts.” -Pope Francis

The National Catholic Board on Full Inclusion has two goals in mind: to advocate for families and support teachers to ensure more inclusive practices in Catholic schools. There were always a few diocese that were inclusive, but there was no national network to connect them. So far, Beth has verified 125 Catholic schools as practicing inclusion nationwide.

The non-profit provides free mentors to Catholic school teachers to help them implement inclusion in their classroom. Beth also helps families with research-based practices, giving them the strength to ask their diocese or school to practice inclusion.

Read a Related Post Here: Federal Vouchers Are No Choice for Students with Down Syndrome

Beth says her organization takes a non-judgemental approach to inclusion. “If a school says no, we have the power of ‘yet.” With proper research and supports we can move the school to a supportive, more inclusive place. We never shame a school.” And she notes that inclusion is different for every student and every school.

“Inclusive education means every person in the school is sacred and wholely, nobody is broken, and everyone has a purpose.”

With over 7,000 Catholic schools in America today, Beth says there’s much more work to be done. While many Catholic schools have remained silent, Beth’s organization has been vocal about the track record of vouchers in parochial schools. “Just look at Florida. The state has a voucher program for students with disabilities, but there’s only 2 diocese in the entire state that practices inclusion.” Still, Beth says the price of tuition is a big issue, and that’s why the National Catholic Board of Full Inclusion raises money to support families.

Even in their own family, the path to inclusion for Patrick isn’t easy. After being included kindergarten through 8th grade, the local Jesuit high school said they couldn’t support Patrick.

“Catholic schools’ biggest barrier to inclusion is mindset, not money. They believe an elite college-prep high school and inclusion are mutually exclusive. That’s just not the case. Look at Vanderbilt’s inclusion program. We’ll get there one day with the power of ‘yet’.”

Find out which Catholic schools in your state practice inclusion, or how you can bring inclusion to your neighborhood school here.

Why I Want My Son With Down Syndrome to Live a Life of Interdependence, Not Independence

December 13, 2017 by Courtney

Recently I wrote a blog post lamenting my mortality as it relates to my son with Down syndrome. Parents are often a child with a disability’s first and most important advocate. While the post started off with me whining that no one can replace me, it ended on a more realistic, less narcissistic note. I will probably die before my son, and he will be just fine without me. How, you ask?

Read Related Post: The Immortal Mom: Why I Can Never Die

He will do just fine, because he will have a “Circle of Support” that will allow him to lead a successful life of interdependence. You read that right: not independence, “interdependence.”

This idea is not mine. Many parents of children with disabilities facilitate this idea of interdependence every day, and one in particular has coined the phrase “Circle of Support.”

National recognized speaker, author and advocate, Janice Fialka, shared her son’s journey to interdependence with me via phone the other day. You may recognize her 30-year-old son, Micah, from the upcoming documentary “Intelligent Lives.”

Micah lives exactly 471 miles from home (I had to smile over the phone, because of course his mom knew the exact mileage), and has worked for the University of Syracuse as a teacher’s assistant for the past 5 1/2 years. He also has an IQ well below what most people would consider functional for a life of independence and “success.” Micah’s mom, Janice, says Micah’s success is 30 years in the making and includes help from dozens of friends.

“My advice to families is to seek out support. At first I felt awkward, uncomfortable, angry or too shy to ask for help. I soon realized Micah needs more than just me,” says Janice.

Micah (center) with his most inner circle–his family.

Fialka says families need to drop their love affair with independence. We all need a circle of support to be successful. “It’s important to learn the value of interdependence. Learn to ask for help and let people in. We had to be intentional about this with Micah,” explains Janice. Micah’s family became intentional about interdependence in elementary school by creating a “circle of friends.” First they invited friends in his class to hang out with Micah at lunch time, recess, and at home.

“Micah is poised now, but he could be very annoying when he was younger. He just didn’t know how to interact with people. I can remember crying because we invited friends over and Micah would be standing in the corner not playing with his guests,” Janice describes. The “Circle of Friends” got more complicated in middle school, but Janice was able to build relationships with eight families who continued to interact with Micah. By the end of high school, Micah had a group of friends rally, petition, and eventually help Micah sue a local university to allow him to live on campus and attend college courses there.

Read Related Post: Social Media Give Self-Advocates Voice

“When you ask Micah now, he will tell you he’s always had lots of friends. But he spent countless weekends at home alone. He’d call five friends and no one could meet up,” remembers Janice. Still, the family continue with the intentional interaction, and it really paid off. “When Micah was offered a job seven hours from home, he was the one that came to us an said ‘I’m going to need to create a circle in Syracuse if I’m going to live on my own.’ We knew then what an impact the idea had on Micah’s life,” Janice says.

Janice wants parents to know it’s “not about letting go, but holding on differently.”

What an impactful message from a mom who’s been there and gets it. You can order Janice and Micah’s new book, “What Matters: Reflections on Disability, Community, and Love,” here. Listen to an interview Janice gave to NPR here.

Tell me what you think about the idea of a “Circle of Support” for your loved one with Down syndrome below. How have you already begun this journey? What challenges and successes have you found in helping your loved one seek a successful life of interdependence?

Last Minute Holiday Gifts for Preschoolers With or Without Down Syndrome

December 4, 2017 by Courtney

If your home is anything like ours, the last thing your child needs is another plastic toy. That’s not to say that some of those type of gifts won’t make it under the tree, but I’m always on the look out for thoughtful gifts that teach empathy, confidence, and cooperation.

I’m leery of gift lists that are only for children with Down syndrome. My son, Troy, plays with everything his typical twin brother plays with, but there are some things he really gravitates towards. I wanted to share an all inclusive gift list. So, I gathered up all of Troy’s favorites, but these are also toys that his 2-year-old sister and 5-year-old typical twin play with often. I tried to choose gifts that teach an important skill like empowerment, empathy, cooperation, STEM, fine motor skills, gross motor skills, etc.

Without further ado, a list of my favorite gifts sure to empower any preschooler in your life:

The affiliate links in this post help you easily locate the products I mention, but don’t cost you to use them. When you use the affiliate links you help to support the efforts of this blog.

Does your child with a little something extra love music? Mine is obsessed. We’ve run the gamut of speech related music CDs, and some are better than others. Troy’s favorite is “Kids’ Express: Imitation Station.” He knows every word to this CD. You can find it here. My favorite is “Kids in Action,” because it gets all my kids up and moving.

There’s also Apraxia specific CDs like “Time to Sing,” which slows down all the well-known nursery rhymes and children’s songs so Troy can sing them along with the beat. It’s amazing how clear Troy can talk when he sings. Has anyone else found this to be true? I really think music is the key to better speech for Troy. We even make up our own songs to get dressed, wash our hands, brush our teeth, or learn our address and my phone number. Message me if you want any other music CD recommendations. We have a ton!

Related: Adult Self-Advocate with Down Syndrome and Apraxia Gives Hope that the Seemingly Impossible Can Be Reached with the Right Motivation

STEM, as well as sensory activities are all the rage these days and this “Marble Genius Marble Run” combines both in a perfect toy (albeit plastic). All three of my kids LOVE this toy, and use it EVERY day.

My neuro-typical 5-year-old has impressed me countless times as he’s created a unique and challenging new marble run. Troy hasn’t mastered the mechanics of how to put the marble run together, but he loves helping Hunter physically put the pieces together (great fine motor task). All three kids are almost in a zen-like state as they watch the marbles run down the maze of tubes. This is definitely my favorite toy, because I don’t have to feel guilty about taking a mini-mental break from the kids while they play with it.

Troy’s teacher is always commenting on how well he takes turns and waits during game time at school. I credit this in part to his love of board games at home. Stack Up! board game is just one example of a game that really teaches it all: balance, counting, fine-motor skills, hand eye coordination, cooperation, and patience.

Playing Stack Up! Check out the tongue–lots of concentration!

It’s not easy or fun to always sit down with your kids and play these type of board games, but it really does pay off. What I like about Stack Up! is that all three of my kids (age 2 to 5, typical and not) can enjoy the game because it scaffolds the directions to reach each age player. Troy and his siblings sat with me a few times to play, and now they enjoy playing without me.

Related: Fostering Acceptance in the Classroom

Books are always a timeless gift. There are so many great children’s books to choose from. Troy especially loves any book that rhymes or can be sung like the “Pete the Cat” series or anything by Dr. Seuss. When we read the book, “What Are Your Superpowers?” by Marget Wincent together they were eager to name their own superpowers.

Troy could relate to the book’s character whose superpower is dancing alone when no one is looking. Hunter, my typical twin son, was a bit more skeptical. He couldn’t understand how every day actions could count as superpowers, which led to a great discussion on importance of valuing everyone’s gifts, big or small.

If you’re looking for something a little more high-tech, Osmo is a fantastic interactive learning game preschoolers can use on any iPad. Troy is obsessed with Osmo Monster, Mo, who asks the kids to draw objects that he then pulls into the iPad screen and uses in hilarious ways. All three kids are laughing nonstop with this game.

Other Osmo games my kids enjoy are Tangram an interactive wooden puzzle, Numbers where the kids can practice one-to-one correspondence and counting, and Words where they use letters to build sight words.

What would the holidays be without one fantastic gross motor gift. This year Troy is getting “Radio Flyer My 1st Scooter.” His typical twin is getting a Razor scooter, but Troy struggles with balance and coordination so I’m hoping this wider-based scooter helps.

Right now Troy uses a specially fitted Amtryke bike that he’s close to mastering. You can learn more here. I’d really like to get him on a “Strider Bike,” which he already has but doesn’t like because it takes a lot of core strength and balance. The Strider bike company is always at the National Down Syndrome Congress Convention, and I think it is a great beginning bike for our loved ones with an extra chromosome.