When My Son With Down Syndrome Proved He Can Participate in Music

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When my son, George, who has Down Syndrome, was in the middle of second grade, we moved to a different house in a different part of town. This was a good move for our family: a larger house and a better school district. The move was hard on George. He was having trouble with the transition. We also went from a school willing to fully include him to a school that wanted him to be in a self-contained program.

After many meetings, much debate, an attorney and an advocate, we agreed on a hybrid model of placement in a self-contained special education classroom balanced with mainstreaming into typical classes in one or two academic subjects and all elective classes: Technology, Music, Physical Education and Library. Even though I wanted him around typical peers throughout the day, I clearly didn’t have the staff support of full inclusion. I thought the hybrid model was a compromise to support behavior and academic needs.

The music teacher came to several school meetings trying to convince me regular music class was not for my son. Once she said, “Your son is teased by his classmates in music class.” Another time, “In regular music class we read, write and compose music, adapted music is a better fit because we sing and dance.”

 

I tried to fight back, “As mandated under the IDEA Act, he must be provided with accommodations to participate in the least restricted environment. He can still attend adapted music, but I would like him to be in regular music as well.” I made suggestions on how the aide could adapt the curriculum. A few attempts were tried but George continued to be served in only adaptive music through fourth grade because regular music was deemed too hard and he couldn’t behave.

In fifth grade the music curriculum changed. Instead of general music, kids were placed in band, choir or orchestra. George wanted to play clarinet like the character Squidworth on “Sponge Bob.” He was enrolled in regular band class with a new teacher. Would this be too hard? Could he behave?

All year I never heard a complaint . In May we were invited to a band concert. George behaved quietly and appropriately. He kept up with “Fere Jacques,” “Ode to Joy” and an impressive Queen remix of “We Will Rock You.” Were there a few clunkers?  Yes, those were probably notes by George. Did he stand a little too long after the applause stopped? Yes. But other than that his performance was great. This was because this teacher had put his energies into giving George a chance.

It took every bone in my body not to walk up to the general music teacher and give her a piece of my mind. I think George’s performance may have accomplished that lesson.

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Dear Doctor, My Son With Down Syndrome Is a Joy

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Two years ago, on this very day, you gave me some news that changed my life. You told me my unborn son would be born with Down syndrome. This must have been hard for you. I don’t know if this was the first time you had to do this or if you had done it before. Perhaps you felt you held the responsibility of crushing my dream of who I imagined my child would be.

I believe you delivered the news to me the best you knew how. You said you were sorry many times. And you quickly rushed to help me with my options. Options that I took very seriously. I was traumatized and your solutions were very enticing. I did not like the news you were telling me and if I could get out of the situation I was willing to listen. I knew nothing about Down syndrome and I looked to you for guidance. You told me everything you knew about Down syndrome and it sounded very bleak. You told me about all the things my son, Cody, would not be able to do and all the possible problems he may endure. It sounded horrible and I thought maybe your suggestion of terminating my pregnancy or giving Cody up for adoption would make my life and his much better.

I am writing you this letter because you deserve to know the outcome of my story. I want you to know that your role as the deliverer of a Down syndrome diagnosis to future mothers may look a lot different when you hear my story about Down syndrome. Yes, I needed to know the hard stuff about Down syndrome, that is your job, but I wish you would have started with the positives, because there are so many!

Despite Cody’s Down syndrome diagnosis, I have a very capable, happy, adorable little boy who is easy to love. I absolutely love being his mom. I cannot imagine my life without him. It’s different and not what I expected, but it is not bad, it is not scary and it is definitely not something to be sorry about. I believe terminating a pregnancy just because of a Down syndrome diagnosis should not even be a consideration. People with Down syndrome can achieve so much and contribute great things to our world. Cody is so much fun, with an energy we can barely contain. He is full of smiles, has big blue eyes that melt your heart and his contagious giggles make him a constant joy to be with. He fits in perfectly with our family and is always right in the middle of the fun with his big brother and sister. His Down syndrome diagnosis does not define him, and honestly we forget about it most of the time. 

I have met a lot of parents of children with Down syndrome since I received my diagnosis and none of them are unhappy or miserable being a parent to their child. Women that receive a Down syndrome diagnosis need to know this!

Sure, some days are hard and frustrating and the extra time needed to accomplish milestones can be challenging, but my other kids are also hard and cause me frustration, just in other ways. Cody has not decreased my quality of life at all. In fact, he has given me new purpose and I have grown so much as a person since he has entered my world. I am more patient, less critical, I hand out grace more freely and I have learned about inclusion and acceptance of all people.

 

This growth has led to me being a part of starting an inclusive program for students with intellectual disabilities at the college where I work. Yes, people with Down syndrome can go to college! This fall 12 students with various intellectual disabilities, including Down syndrome, will come to Judson University in Elgin and live in the dorms, eat in the cafeteria, go to classes, participate in co-curricular activities and gain work experience through both an on-campus job and an off-campus internship. These students will be prepared for independent living and pursue competitive employment at the completion of the program. The world is such a better place for people with Down syndrome thanks to so many who have seen the value and significance that these wonderful human beings have despite the stereotypes and false perceptions. I feel honored that I am a part of moving society forward in inclusion and acceptance.

Approximately one in every 700 babies born in the United States is born with Down syndrome, so there is a good chance you may have to give a Down syndrome diagnosis again. If you do, please don’t tell them you’re sorry. Do not start with the negatives. Communicate to them that it will be a different road than expected but that it is not a bad one. Educate them about the many therapies and services ready to help their child achieve. Tell them that people with Down syndrome are included in mainstream school and can even go to college and hold meaningful jobs. Make sure they know that most parents enjoy having a child with Down syndrome and instead of giving them the phone number to an abortion clinic, give them the phone numbers of some local moms that have children with Down syndrome so they can seek advice and reassurance from them.

My hope is that my story has inspired you to learn more about Down syndrome and that you will deliver the news of any future diagnosis with encouragement and hope. Reinforcing to these parents that, despite their fears and probable challenges, they need to be brave. Brave to have faith and embrace this different and wonderful gift that they will soon be so thankful for. And please, don’t feel sorry for them, they just hit the jackpot.

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Thinkstock image by BerSonnE

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To All the Dads Who Love a Child With a Disability

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This might be one of those cheesy posts my husband despises. Actually, I recently went up onstage at an improv comedy show and they asked me to describe my husband so they could act him out. I told them he was cynical, yet loving.

He is so much more than that. And he will never let on to how much he actually does for our kids, especially for our little Harrison.

But I have been secretly photographing him with Harrison for the past few months when he doesn’t know it, and the photographs, though not professional, tell a beautiful story.

It’s not always easy raising a child with a disability, but Vincent, my amazing husband, embraces each moment of it and shows our little Harrison lots of patience and love.

Since my husband doesn’t like cheesy posts, this is dedicated to all other dads like him. Because it’s these little things you dads do that make your kid ask for “Dadddyyy!”

I see you stop whatever you are doing to read a book to your kid. Your kid carefully picked the book out or he picked out a book that had a pig on it or he randomly grabbed whatever was on the ground. You read it to him because any of those reasons are huge for him. The fact that he leaned down, picked up a book, and walked over to you is a milestone in itself that has taken years to accomplish.

I see you take your kid outside to go for a walk. He signed “outside” and “walk” together, so, to keep encouraging his stringing of signs, you quickly put on his socks and shoes and take him outside for a walk.

And when he gets tired, you carry him.

 

I see you take care of him when he is sick. You’re the first to jump up when you hear him at night (well, most of the time). Even if he is just stirring in his sleep, you fill up his water cup and take him his water. You call your wife several times throughout the day to check to see how he is doing.

When the sickness becomes serious, you’re the one who takes him to the ER. Multiple times. You’re the one who insists on staying with him for when those inevitable ER visits turn into hospital stays.

You take him to the studies I can’t emotionally handle. A.K.A. The “Dreaded Sleep Study.” (All kids with Down syndrome need to have this study done before age 4 since they have an increased chance of sleep apnea.) I’m still in awe of how you survived that.

I see you share your snacks. And I see you hold the water cup while also encouraging and teaching your son to hold it on his own.

I see you get sad. As a father of a kid with a disability, I see you realize you can’t fix everything. The frustration that comes with another illness that you know will take your son two times longer to get over, or the heartache that comes with yet another medical diagnosis is wearing.

Yet, you continue to lift your son up. When the world looks down upon him because of his disability, you lift him above so he can see things from a different perspective. To see that God loves him. To see that he is fearfully and wonderfully made, and how we should all stand back in awe of God’s goodness.

So, thank you, Dads of kids with disabilities. We notice all the little things you do. We see you and we thank you.

Follow this journey at Down By the Marsh

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'Seeing the Forest for the Trees' in My Son's Future With Down Syndrome

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Courtney with Troy at 6 months old.
Courtney with Troy at 6 months old.

My son, Troy, is almost 5 years old. When he was born I knew no one and nothing about Down syndrome.

I was hungry for any information I could find about Down syndrome. I spent the first month of his life on Google (bad idea, by the way). I quickly graduated to national conventions, advocacy groups, and now specialized training in special education law.

Secret Facebook groups and specialized books taught me all I need to know… Or so I thought.

Nothing can replace experience. Living life with someone who rocks an extra chromosome gives you a front row seat to the docudrama that is Trisomy 21. Troy has taught me so much about how outdated stereotypes and low expectations can warp your perception of disability.

But living with a preschooler with Down syndrome often reminds me of the saying “It’s hard to see the forest for the trees.” We often get lost in weekly therapy sessions, frequent doctors’ appointments, and impulsive behavior.

Self-advocates at a communication workshop.
Self-advocates at a communication workshop.

For a while now, I’ve been searching for ways to steal a glimpse into Troy’s possible future. I really want to see “the forest.” One way I’ve done this is through a monthly communications workshop with adult self-advocates. Simply talking and interacting with adults with Down syndrome on a regular basis has taught me so much about what our future may hold and how to plan for the best.

This led to an opportunity, from our local Down syndrome group’s Executive Director, to talk about the impact of our communications workshop on a local radio show.

Walter (bottom left) with MVDSA Executive Director, Willie Cox, and I at iHeart Radio.
Walter (bottom left) with MVDSA Executive Director, Willie Cox, and I at iHeart Radio.

The natural pick for my co-interviewee was Walter, a 45-year-old iHeart Radio lover. When we showed up to the radio conglomerate, Walter already had long-time friendships with every disc jockey, knew which of the seven radio stations they were assigned to, and the exact times they each went live. Everyone hearts Walter!

I worked in radio for some time during college, and I came to appreciate the intimacy of the medium. You have to capture that emotion and authenticity the first go round, because your listeners can’t rewind or reread your story.

A common rally cry in the disability community is “Nothing about us, without us!”

Without Walter our story of advocacy would be flawed. We spoke with the radio DJ about needed services and jobs for individuals with Down syndrome. Walter nailed the interview. He gave our radio interview the authenticity and emotion the audience will remember.

He was direct: “Hi, I’m Walter. I have Down syndrome and I’m proud of who I am.”

Walter cracking jokes on-air.
Walter cracking jokes on-air.

Not to mention, funny: “107.7’s DJ, Chris Davis, promised to pay me if I mentioned him today. Chris, are you listening?”

I like to imagine an expecting or new parent, with what seems like a scary diagnosis, randomly tuning in just as Walter is proudly talking about his job at the Tennis Club. I know I would have loved to hear Walter when I was struggling during Troy’s first few months.

At 45 years old, Walter did not get all the great services Troy receives through early intervention and inclusive education. Still, Walter thrives! It’s so important to remember what you’re actually advocating for sometimes. Just like Troy, Walter deserves a life of self-determination and choice. We really have to listen to our self-advocates at all stages of life to understand their needs and how to pave a better path forward.

If you’re interested in hearing our radio interview, or just want to learn more about our journey of inclusion and advocacy, visit us at www.inclusionevolution.com.

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What It's Really Like Having a 2 1/2-Year-Old With Down Syndrome

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My son is 2 1/2 years old. By the end of the day I am exhausted, worn out, pooped if you will. My son has Down syndrome. He has “special needs.” You might be thinking, “Wow, dealing with all those ‘special needs’ must wear you out, run you down.” Or, “I don’t know how you do it. I couldn’t handle it. You’re a superhero. God chose you for a reason.” And every night when it’s time for me to crawl into bed I am thoroughly exhausted. But I’m not a superhero. And God didn’t have some “special” plan for me.

I’m exhausted because I’m the mom of a 2 1/2- year-old little boy. I’m the mom of an every day, totally typical ball of chaos. I’m the mom of a toddler.

I’m exhausted because he just learned how to climb and that’s all he wants to do. I’m worn out because he loves making messes. I’m tired because we spend hours dancing and screaming and playing and racing cars and singing songs. By the end of the night I’m pooped because he didn’t want to get out of the bath and 20 minutes later the water has gone cold and each of his perfect little fingers and toes are wrinkled and I’m behind on my chores because I couldn’t help myself but watch him laugh and explore and play.

 

Oliver is an early bird. When he wakes up, he wakes up fast and hard, and he’s ready to take on the day. When he wakes up, there’s barely enough time for coffee before the terrible 2s commence. So we get up and have breakfast. We watch “The Secret Life of Pets” at least once and we will probably watch it again before the day is over. We get dressed and we run errands. He helps with the laundry by unfolding every piece I’ve just completed. We do all the hand gestures to the itsy-bitsy spider about 30 times in a row. Sometimes he just likes to walk back and forth across the room and laugh to himself because he finally figured out how to move his legs in an upright position.

He’s a daredevil, he’s messy, he’s a goofball, he’s a kid. He isn’t challenging or exhausting or a steep mountain to overcome because of Down syndrome — he is all those things despite it.

On Mondays our friend Michael comes and does physical therapy with us for one hour, and on Wednesdays our friend Florence comes and does speech therapy with us for one hour. We see the doctor regularly. Sometimes a little more than average. But most of our days are filled with laughter and messes and Oliver constantly trying to cheat death by falling off of things. I clean up the same toys at least 17 times a day. My most used phrase is, “don’t touch that.”

I’m not a superhero. I wasn’t chosen for anything “special.” There was no set path that God planned for me because I am a stronger person than the next. I’m just a mom raising a toddler, trying to keep him fed and clothed and maybe teach him some things along the way.

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The Bond My Daughters Share Because of Down Syndrome

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“Sissy!”

It’s the clearest word in Willow’s vocabulary. It’s also the word she says most frequently. I’m talking at least 50 to 60 times a day. I kid you not. Just ask the “kid” she’s calling for, Bella, aka, “Sissy.”

To say these two are best friends is an understatement. Bella and Willow are soul sisters, BFF’s, joined at the hip, unless they’re dancing, of course.

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Sometimes, I just don’t believe it. I never thought it could be this way. Because, while they have so many similarities, in the beginning, I spent too much time focusing on all their differences.

When I found out I was pregnant with Willow it was a shock. We thought we were done having kids. Our oldest, Laken, was about to turn 6. Bella had just turned 4 and my biggest concern at that time was the age gap I thought would divide our children. Would our youngest ever bond with our oldest? Would our middle child have anything in common with the new baby?

I learned the answer to that question pretty quickly. Our 20 week ultrasound revealed our new little bundle was a girl, just like Bella. Needless to say, the soon-to-be big sister was excited. In fact, she spent the rest of my pregnancy planning and preparing for the arrival of her new playmate. While the age difference still worried me, I started thinking things would be OK. That is, until delivery day.

“We think you’re baby has a heart defect.”

Those were the first words out of the mouth of the doctor.

“And, we think the heart defect is due to your baby’s Down syndrome.”

Those were the last words out of his mouth. Well, the last words I heard, at least. I think he may have said more, but I really didn’t process much after that point. I was in shock. I was scared. I was confused.

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To be honest, the heart defect was the scariest part for me. I thought my new baby, the little girl I had just birthed, the precious child we had just named Willow, was going to die before she even had a chance to live. The Down syndrome diagnosis didn’t really phase me.

As the days passed and the cardiologist filled our hearts with hope, I caught myself thinking about what Willow’s future might actually look like. I felt a lot of happiness. That is, until I thought about Willow’s big brother and sister. Would they ever bond with Willow? I mean, it’s one thing to have an age gap between them, but, now they had an extra chromosome in there, too.

I wasn’t afraid of Down syndrome, but I was afraid of what it might mean for my older kids. I couldn’t help but worry for them, especially Bella. She was looking forward to being a “Big Sissy,” to having a little playmate, a built-in best friend. What would this diagnosis mean to her?

Fast forward 3 years. I have my answer.

I believe Down syndrome — that extra chromosome — has helped strengthen the extraordinary bond between Willow and her siblings, especially her big “Sissy,” Bella.

Willow and Bella, Bella and Willow, The Two Terrors, The Dynamic Duo are true best friends. BFF’s. They do everything together and love being together. Well, most of the time, that is. Bella could probably do without the 6:30 am wake up call from Willow. Willow doesn’t understand that just because she’s awake doesn’t mean Bella needs to be awake. If my husband and I don’t keep and eye on her, Willow usually finds her way to Bella’s room and starts banging on the door, yelling “Sissy!” in an attempt to rouse her playmate. It’s cute, I’m not gonna lie. In fact, I might be guilty of watching from behind a corner for a few seconds before coming to the rescue. Ooops.

When Bella finally does wake, the two sisters waste no time getting down to business. Sometimes they play with dolls and stuffed animals. Sometimes they set up a pretend store and load their cute little purses with fake dollar bills. Other times they play dress up. I’ve seen them as super heroes, doctors and even animals, but most often they dress up as dancers. These two love music. Love.

Occasionally, Bella has to break away from the fun to use the rest room. That’s when Willow switches to the role of the annoying little sister.

Case in point:

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There are other parts of being an older sibling I’m sure Bella and my son, Laken, find more annoying than a tiny hand under the bathroom door. But, you would never know. The love my children have for each other, the bond they share, is unbelievable. Honestly. Thinking back to those early days after receiving Willow’s diagnosis, I don’t know if I would have believed anyone who would have told me this is what it could be like, what it would be like.

The reality is my girls are — well — just girls. The bond was always there, even with the age gap. Throw in an extra chromosome and that bond just got tighter. Bella’s love for her sister is a protective, proud, adoring force that can actually be felt. In her words “I’m so lucky to have Willow as my sister. She’s the perfect sister for me.”

She right. They’re perfect for each other.

Bella is away at summer camp this week. It’s been pretty quiet around here. Well, except for the occasional “Sissy?”

She’ll be back soon, Willow. I promise.

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