The Important Lesson My Son’s Cousin Taught Him Through Music

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My dearest Callie,

I remember how excited you were, 23 years ago, to find out at the age of 2 that you had a cousin.  You don’t remember, you were too young at the time, but I assure you, you were thrilled.

You were less thrilled when you tried to get him to play dolls with you and he declined because even at a year old he was obstinate. But you still loved him and decided if he wanted to play trucks, you would play trucks with him. I think you lived a lot of your life doing what Andy wanted.

Years passed and you were still probably too young to remember Andy before the diagnosis. You don’t remember the sleepless nights or the countless times your uncle and I cried on your father’s shoulders because Andy had Aspergers and we didn’t know what this would mean for him.

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More years passed and you only got to see us periodically because new jobs meant we moved away and more babies in both our families meant traveling was harder.

I know you were old enough to remember staying with us when you were in middle school and Grammy was so sick. You and your daddy had come to say goodbye, and you were both glad to visit us as well.

I knew it wasn’t what you expected, Andy being so different that you had more in common with our 9-year-old daughters than with the cousin who was almost your same age. I braced myself for the explanations and excuses for Andy’s behavior. But I never had to use them. You just loved him and worked extra hard to find common ground. That common ground was music.

Andy had been trying to play the cello for years because he liked the sound, it soothed him. But he didn’t understand “gentle” or “lightly” so when he played he sawed the bow over the strings like he was trying to skin a deer, not trying to play the cello. At first, you tried what everyone does, saying, “play gentle, Andy, like you hold a baby.” But he didn’t understand.

Then I heard you both play again, you, decent for a 12-year-old, Andy, like nails on a chalkboard. I heard the sigh and ran in to prevent the meltdown. But before I got there, I heard my youngest daughter tell you he didn’t know what “gently” meant. I was just reaching the door when I heard you say “Oh” and I thought “oh no, here it comes.”

But then you said what has possibly become the most meaningful sentence anyone has ever said to him: “You’re holding the bow too close to the strings.”

Andy has played the cello gently ever since.

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The Conversation With My 9-Year-Old Daughter That Broke My Heart

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“Momma, what did I do wrong?”

“What do you mean?”

“What did I do wrong to make people not like me?”

“You didn’t do anything wrong. You are a kind, lovable child. The right people see that. It’s the wrong ones that do not.”

This sadly was a conversation I had with my 9-year-old daughter, who is on the spectrum, last night.

I can’t tell you how many times it breaks my heart to have a conversation like this with my autistic child. A child that doesn’t understand the social sphere around her. I see her trying to understand. The gears and emotions turn inside that little head of hers, Trying so desperately to understand the why and the how of things. And for any parent, it can be hard to stand back and let our children face adversity to make them learn a lesson that will help them into adulthood: Not everyone is going to like you.

It doesn’t matter if you are the perfect cup of tea, there will always be that one person who will find fault in you.

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But this lesson is hard for those who don’t pick up on the social cues given to them.

They start to internalize things. They start to think there is something actually wrong with them. All those insecurities like, “why can’t people see me and like me?” plague them. They start to be ashamed of themselves when there is no need. Their self-confidence and self-esteem plummets. And as parents, we watch as our children become shells of themselves. I understand that rejection is a way of life, but even for some adults, it’s a hard pill to swallow.

I read an article this morning about how to be a friend to a person with autism. It was a fantastic article and something resonated with me. How about how to be a friend in general? Everyone has their quirks. Everyone. How about trying to look past what makes a person different. I know I preach that more times than I want to admit. But it’s the sad truth of it.

I watch as my child is rejected and pushed away, told “no” or told she isn’t the desired person other children want to play with. I watch the hurt that comes across her face. Even though she might not understand the reasoning behind the rejection, the emotion is still there. I get that she is a somewhat shy child, and sometimes her play isn’t what others expected, but she is still a child. A child with feelings. A child that often gets her feelings hurt. I think people think just because she understands the world differently she is somewhat immune to it all.

Guess what? She is not. She takes it all in.

For most of her life, she has lived in the shadow of her more outgoing brother. My eldest is the social butterfly, but he is also the brother that was my daughter’s voice when she didn’t have one. He is the brother that tries to include her when she is pushed away or when he sees her by herself.

Now that she is coming into her own, she is being more vocal about how she feels. The joys, the sadness and the times she is angry. As a parent, this is a blessing to see. But with that blessing comes watching the whole wide range of emotions she is discovering.

Teaching children to be kind isn’t a hardship. It isn’t like trying to teach a university level physics problem. Teaching them to be aware of the growing world around them isn’t a hardship.

No parent wants hear from their child that they think there is something wrong with them because others can’t accept them for who they are. I’m trying desperately to make her see that she is worth someone’s time.

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To the Sister Who Gave Students With Special Needs a Chance When It Seemed No One Else Would

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There was a time in our community when orphanages and institutions housed children considered “unteachable.” Left to their own devices, without the tools to learn or encouragement to explore, without love to sustain them, these children did not thrive.

However this one time, in our community, a kind and ambitious woman who was a Sister and teacher at the St. James Orphanage decided to teach the children she knew weren’t allowed to attend the public school. Then, she began teaching others who needed special attention and had nowhere else to turn. This was 1960 and how the Madonna School in Omaha, Nebraska began. 

Sr Mary Evangeline Sister Mary Evangeline gave her students a chance, she gave them love and most of all, she gave them confidence to learn. She worked under the premise that every person deserves dignity and should be taught to live as independently as possible. For many years, The Madonna School was the only option in our community for “special children.” 

She wrote, “I thank God for giving me a heart which cannot be satisfied with just knowing about or reading about these children of God.” 

Sr. Evangeline was not just a teacher but also a student of the children at the Madonna School. She wrote these words as comfort to herself and others after a young girl named Mary Beth died while still a student:

So many times, Mary Beth would smile and say to me, “It’s all right, sister – it’ll be OK!” And now I remember, and I thank God for the message he sent me through Mary Beth. “Don’t worry,” she often told me – and somehow these difficult days, I cannot recall what I did for Mary Beth or what I brought her or if I brightened any of her days – I am only remembering the patience she had with me, her attitude that whatever it was, was all right. In so short a time Mary Beth learned what some of us are still trying to figure out.

We found the Madonna School because my son, Marcus, although in the same building as “normal children,” was being excluded from them in his old school. The administrators saw Marcus not as a socially growing and anxious-to-learn child but instead as a severely handicapped boy with an IQ too low for integration. To me, those with the power were dooming him to failure. When we heard of The Madonna School, we were desperate for an option. 

On our first visit, the school building at that time was in a renovated church with small classrooms and narrow halls. But it was lit with positive energy, with ambition and, I’ll say it again, with love. How could I not choose the school where I felt the teachers wanted my child to learn? They rooted for his success. The halls were not darkened from defeat, which I literally felt like a weight in the public school option. 

This was 20 years ago, and again, much has changed. The public schools in my community no longer express that Down syndrome, in and of itself, is impossible to teach. Although many parents still have to work closely with the schools to promote integration and fair teaching of their children, there are several stories of success. 

The Madonna School, too, has grown and adapted, offering specialized teachers and therapists. All along Sr. Evangeline believed every child should be given the education and tools to be a part of his community, to be as independent as possible, to contribute, to love and be loved. 

In this era, the Madonna School is the option families turn to for a place of safe learning and social interaction, the students build life-long friendships. Students are taught both academic and life skills in an environment that allows positive peer relationships. And once the students reach high school and transition ages, independent living and job skills are an integral part of the curriculum. Sr. Evangeline was one of the first in our community to make adult living and life skills part of the goals for her students. As adults, she said, “I did not want them to sit at home all day with no possibility of being important to others or to themselves.” 

Sr. Evangeline was truly a hero among us; she dedicated her life to the children in need of a teacher and in turn taught our whole community how to value life. “There will always be special people who need special people.” This was her mission. 

Rest in Peace, Sister. My family and many others are indebted to your legacy.

Sister Mary Evangeline Randolph, RSM, was born on September 25, 1919 and died on February 10, 2015.

*All Sr. Mary Evangeline quotes are from her autobiography, I Have Seen Him.

This post was originally published on the Madonna School Blog.

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When a Hockey Game Turned Into Something Much More

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I’m sure we can all recall a bad day in our lives, one we didn’t expect would happen. Those negative moments seem to remain with us. But when was the last time you had a really good day that you didn’t expect would turn out that way? Why are those days difficult to remember? Is it because they are few and far between? Maybe so, but here’s one I know I’ll remember for a long time.

We start every hockey season with grand plans to attend at least a half dozen home games. Our local team, the Sea Dogs, are exciting to watch. This season, we missed all the fall games, thanks largely to a more-hectic-than-normal home front. But a few weekends ago, we actually made it to a Sunday afternoon game to watch the Screaming Eagles face a good group of Sea Dogs.

With the best of intentions to arrive early, we pulled up to the stadium, Harbour Station, only to discover the main parking lot was full. I guess we weren’t early after all. I asked the attendant if it would be OK to drop my son, Ben, off before finding a place to park the van. He acknowledged without hesitation and offered a club parking spot for free so Ben wouldn’t have to travel far in the winter air at the end of the game.

As I made my way to the main foyer, I was greeted by a wall of people. Eventually, I reached Ben and my wife, Jan, as she was talking to one of the ushers. An attendant then parted the crowd and led us to a “fast pass” line of sorts to purchase tickets so Ben wouldn’t have to wait. As we filed into this line, a friend stopped to donate his season tickets, since he was going to one of the corporate boxes to watch the game.

Wow. Three random acts of kindness in less than 10 minutes. This was going to be a fun afternoon.

The ticket agent provided Ben with a seat that was both wheelchair accessible and close to our newly acquired season seats. She even threw in a discounted rate, just because.

Make that four acts of kindness.

We entered the section to find our seats and quickly scouted out a good vantage point for Ben, directly behind the visiting team’s goalie. Shortly after the national anthem, two guys with Harbour Station shirts approached us, one with a large video camera and one with a mic, and asked if we had the Alpine “Best Seats in the House” seats for the game (these are two large, leather recliners, propped onto a high platform).

When we told them no, one of them asked if we’d like to have them. Caught off guard, we asked, “What’s the catch?”

He said, “Nothing. You just have to sit there at the 14th minute of the first period and be displayed on the big screen. Plus you get free popcorn and beer tickets.”

Who could refuse that?

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So that’s five acts of kindness. This never happens. I was feeling out of sorts.

During the first intermission, as Ben and I went for a drive along the concourse, I recalled a lesson from the DreamBuilder course I took last year, where the host, Mary Morrisey, taught that the law of receiving is activated by the law of giving. And how important it is to focus on giving and generosity since we live in an abundant world.

That notion has stuck with me, and I must say I’ve at least become more aware of little ways to practice it, like larger tips at coffee shops and restaurants, larger donations for weekly mass collections and how I interact with people in general. I don’t always follow through, but I’ve been, certainly, more intentional.

Putting all that together, I wondered if, perhaps, the events of the day weren’t coincidental. That I have, somehow, activated this cycle of abundance, where complete strangers can play an active role in showing kindness and giving back to us and ultimately, to Ben.

What a great way to see the world! And what a really good day it was that we didn’t expect!

Follow this journey on Third Time Lucky.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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For a Mom or Dad Going Through One of Down Syndrome’s Hard Days…

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Some days are really dark being a momma to a child with Down syndrome, congenital cataracts, congenital heart defects and a slew of other special needs. Some days you’re beyond frustrated because hours upon hours are spent in therapies and appointments. Some days you’re so desperate to just hear the word “momma” instead of teaching her how to sign. Some days you’re jealous of other kids lapping your little one in milestones and accomplishments. Some days tracing the scars of their many surgeries almost chokes you in fear like the days they happened. Some days you can’t believe the ugly in the world when people say/write/think, “Why didn’t she abort,” “Down syndrome babies are a drain on our taxes,” or “Their lives are useless.”

Some days are thankfully just that… Some days.

Most days are filled with so much happiness because of contagious laughter. Most days are filled with pride at the determination in accomplishing everyday challenges. Most days are drenched in joy because what really matters is what is being presented. Most days are filled with a deep thanks because your child survived and is showing you and others just how much purpose their lives hold.

Most days are filled with nothing but gratitude because you realize most days trump some days. And some days make most days that much sweeter.

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This post is to celebrate all the Brave Heart Warriors out there and celebrate CHD Awareness WeekMy little girl’s heart surgery was life changing and something that will stay with me forever. To those who are fighting, those that didn’t make it and those going through it, Fight on Brave Ones, fight on.

All outrageously adorable photos by Eden Grove Photography.

This post originally appeared on Happy Soul Project.

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The Playdate My Son (and I) Will Absolutely Never Forget

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So, I love to talk about my son, Caleb, who has autism. I love to talk about our pride in his accomplishments, his amazing journey contained in only eight years on this earth, his great love of the world and the marvelously simple yet complicated way he sees things. But right now, I don’t want to talk about those things. I want to talk about his friend, Noah.

I met Noah at the end of Caleb’s first-grade year. I walked into his classroom, and this little guy ran up to me, jumping up and down and grabbing my hand. He introduced himself and asked if Caleb could come over for a playdate. Tomorrow. “Please, tomorrow!?”

Now, in the world of regular things, this does not sound like a big deal. In our world, it is truly exciting for Caleb and truly terrifying for us. You need the strategies of a military campaign, the finesse of a politician and pure, raw hope. Do I send Caleb to a stranger’s house with no idea how he will react to anything he sees? How he will react if he eats the wrong food? Or how they will react when he says something inappropriate or just ignores Noah because it is a totally new situation? (Because those are things that happen daily). Do I try to role-play every possible scenario that might occur and hope it sticks? (Or, more likely, get him more confused and make him nervous). Do I tell Noah’s parents about his autism and watch the invite dry up and excuses made? (Like so many, many, many times before). Or do I just invite Noah over to our house and hope for the best?

Unsure of what to do, I am completely caught off guard when Noah calls the next morning at 8:00 a.m. because he is so excited for them to get together. I take the cautious approach, and we invite Noah over here to swim and play. As I cross all available digits, he arrives, and I proceed to hover discreetly and watch as everything and nothing happens. For four hours, I watch Caleb play with Noah, ignore Noah, laugh with Noah, argue with Noah and throw a tantrum when they don’t play what Caleb wants, and I watch Noah take it all in stride.

And while I am sitting there in stunned wonder, it suddenly hits me: Noah has seen this all before. He has sat in a classroom for the last year and seen Caleb at his best, his worst, his sensory overloaded, his happiest and his stimming. All of these different emotions are just a part of Caleb. It is who he is in Noahs’ eyes. Gracious. I almost weep with the knowledge — the knowledge that a child understands, enjoys and loves our son as we do and, greatest of all, wants to be his friend.

Making new friends is something most parents take for granted and can just let happen naturally in school, in their neighborhood or at the park. For us, it’s not so easy: we have tried many times with friends’ children, but Caleb never clicked with anyone or, worse, he had a moment and was rejected. You may think I am overreacting, but in four years of school, he had only been invited to three birthday parties and no playdates. Seriously. Three parties, no playdates.

A friendship made completely organically is a gift that comes so rarely to children like ours. It feels like mountains were moved, but in reality, it was just love, kindness and understanding without judgment. It is truly one of the most genuine and beautiful things I have ever seen with my own eyes.

This weekend, I watched Noah across the pool as Caleb ignored him for the umpteenth time while Noah called his name over and over. I saw him take a deep breath as a look of determination crossed his face. He walked over to Caleb and started being silly, and while Caleb stared into the water, a smile broke across his freckled face. Then they went splashing into the pool.

I know that look of determination I saw on Noah’s face. That determination to bring Caleb into the experience that feeling of not giving up. I knew I had been taught something profound. Noah was teaching me that the world was not going to pass our son by — it was going to pull him in and open its doors wide. There is a generation of love and kindness coming, and when they inherit the earth, there is no thing, no accomplishment, no friendship and no experience that will pass them by. What a wonderful world this will truly be.

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Cyrus, Caleb and Noah eating ice cream and enjoying a lazy summer day.

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