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.
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.Â
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.Â
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.
Hunter and Troy with Coach Kyle
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.Â
Troy playing 3rd base
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.
Troy’s first hit
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.
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?
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.
“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?
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:Â
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!
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.
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.
What do you plan to get your loved one with Down syndrome this holiday season? Share your ideas with me below.
I just need to be up front: I’M NOT A HUGE FAN OF MATH! Add to this the fact that students with Down syndrome often struggle with the abstract idea of numbers, and we’ve got a tough problem to solve.Â
But one of my recent posts “Teaching Your Child with Down Syndrome to Read,” was so popular that I thought I should share a similar approach to teaching early math concepts. All of this information is from two programs that I learned about at the National Down Syndrome Congress Convention and other conferences I’ve attended. Most of the material is free, so in the end it’s just about finding the time to incorporate this into your child’s day.
Here’s what we know about math and students with Down syndrome. There’s less research regarding this topic compared to literacy and students with T21. We do know that you can teach these students math in the same way you teach it to typical students, but it needs to include “smaller steps, more repetition, more guided practice and lots of visuals.” That’s according to Orange County Learning Program Director, Dana L. Halle.
Math sense equals INDEPENDENCE!
Just like literacy, math can open doors for individuals with Down syndrome. But unlike my typical children, who seem to just figure out how to do simple counting and patterns on their own, Troy has needed a lot more guided practice. You will likely have to consciously teach concepts like “more than” and “less than.”
There’s a benefit to starting early and often. “This doesn’t mean 3 times a day everyday. It just means often enough that it becomes part of what they expect. So they don’t forget what you’re teaching and you have to start over again,” says Halle.
So, where do you we start?
With Troy I use Sue Buckley‘s one-to-one correspondence method, which includes keeping the objects the same. This means you want to throw out those counting visuals that has 1 elephant, 2 balls, 3 flowers, etc. Buckley argues the changing objects are too confusing for beginning counters.
We literally started one-to-one correspondence with Troy using black dots–simple, unmistakeable. Now Troy is using Buckley’s method with his favorite food. YES, food is imperative in teaching counting in our house (LOL)!
Like Halle encourages, we try to incorporate simple math sense into our every day routine. Troy counts the stair steps, the buttons on his shirt, the number of plates at the table, while we clap to music, etc. Troy is starting to understand that counting isn’t just memorizing the words 1 through ten, but instead that each number represents a specific amount of objects. It took us 2 years of counting and lots of one-to-one correspondence practice to get to this point.
What comes next?Â
Patterns worksheet from LP Online
Other early math skills include shapes and patterning. Troy has mastered shapes names and sorting through continuous repetition, but patterns are much more difficult. Understanding what comes next is a very abstract thought. We’re starting simple. You can download free pattern worksheets like these from LP Online with a guest login.
I always forget to print new pattern sheets out, so again FOOD works better for us. Check out Troy below doing a simple ABAB pattern with his favorites: blueberries and Cheerios a.k.a O’s (disclaimer: let me apologize in advance for my 2-year-old crying in the background…REAL LIFE here people! LOL!)
With all this conscious practice, Troy will be prepared for math lessons in kindergarten. He’s still behind his typical twin brother, but he has a basic understanding of the earliest math skills. Luckily, we have one more year to continue to practice.
If your child is ready to move on to the next stage of math sense, I would start with Down Syndrome Education USA’s “Number Skills for Children with Down Syndrome (5-11 years)“. Also, I bought a Numicon system for Troy, but have yet to start this skill. It’s a great visual way to make numbers real. Check it out below and here.
How do you teach math sense to your child with Down syndrome? Tell me about your triumphs and challenges below!
