It's October which means it's Down Syndrome Awareness Month. This post is for my son and the miracles I have the privilege of witnessing him perform.
Having a child with different abilities often brings concerns about their future. You worry they won’t have friends or be accepted; and that their life may have no value. In those moments, you aren’t aware of the incredible things they will do, like magically changing a person.
I don’t recall if I’ve ever come right out and told another mom that her child will literally change a person or their life for the better. I’ve witnessed this with my son on several occasions, so I feel compelled to share this now. The following are two of my favorite moments that I think about often.
The first is about a little boy my son met when we lived in New Hampshire. We moved there for a brief stint when Matt was in fifth grade. I was pleasantly surprised when I learned that NH was the first state to do away with institutions for people with developmental disabilities. I was even more surprised when I learned the school my son would be attending did not have segregated classrooms for kids with special needs. This meant my son would be in a regular classroom setting and would be assigned a personal aid. I loved it! I had wanted this for him when we lived in Utah but sadly it was not available. In fact, any time I brought it up in our IEP meetings, I was met with immediate resistance. In this classroom, my son would learn the same curriculum as his peers, but on a level, he could understand.
School had already been in session for a few months when we made the move, but the children in this classroom welcomed Matt immediately. They loved him! What’s not to love about an adorable boy who has an outgoing personality, right?
This wasn’t how it was for “Evin.” Evin was the outcast in the classroom. He was a hefty, little boy, and it was obvious his home life was different than others. He didn’t have the nicest of clothes and some days I wondered if he had brushed his hair or even bathed. For these reasons, he didn’t have friends. Evin rarely smiled and was a sad child. My heart always went out to him.
Things began to change for Evin when my sweet boy began to gravitate toward him. In a matter of time, my son, who had quickly become a popular boy, chose Evin, out of all of the kids in the class, to be his best friend. I watched the confidence in this sad boy grow when he began to realize what was happening. He began to smile more and participate more, and eventually, the other children began to accept Evin and include him in things. By the end of the school year, there were no outcasts in the classroom. It was incredible to watch the transformation in a young boy, who just needed someone to like him. Evin began to believe in himself.
This circumstance is a perfect example of how one person can change the world for another. It was my son, the one with “special needs” who was able to teach an entire classroom the power of acceptance and kindness. To turn fifth grade around for Evin.
I often think about Evin and wonder where he ended up. I hope his confidence remained with him when we moved back to Utah, and I hope his life turned out to be a great one.
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The second story is one I wrote about in my book. It’s one of my favorite chapters “When a Split Becomes a Strike.” It’s the story of a miserable older gentleman who lacked compassion in a circumstance that involved my son and his bowling ball.
In summary, my son’s ball had “broken” after less than a year of use, so we were trying to get with the manufacturer to see if they had a warranty. This gentleman did not want to be bothered by our situation and treated my husband and me poorly as we tried to discuss the issue with him. Our conversation was starting to get heated which had awakened the Mama Bear in me. My son noticed my emotions, because he’s in tune like that, and stepped in before I had a chance to lose it. He grabbed the man's hand and shook it while saying “Hi I, Matt.” This caught both me and Mr. Cranky Pants off guard. The man accepted the handshake and returned it as he introduced himself.
“You a smart man” Matt continued. My frenemy was speechless. A moment passed, and then he asked Matt.
“Do you like to Bowl?”
Excited that this man returned the attention, Matt perked up. “Yep, a lot. I’m Fireball and I bowl in the Special Olympics. I have lots of medals.”
“Oh yeah?” the man just stood there speechless as did I. Awkward silence as we waited for one of us to speak up. It was he who did so first. I held the receipt for the ball in my hand and he took it and said, “I’ll make some calls, but I don’t know that I’ll have much success in getting anyone to help us.” He finished by saying he would call me when he had information. We said our goodbyes and left the shop. I had little hope for this outcome.
A few days later my phone rang, and it was the manager of the shop.
“Mrs. Hooton, I’ve contacted the manufacturer of your son’s ball, and just as suspected they aren’t willing to help with the situation.” I could feel the heat rising to my face but before I had a chance to say anything he went on. “I wanted to let you know that you have an amazing son. He touched me in a way I’ve never experienced.” I felt the sincerity in his tone. “After you left the store, I sat in the back room and cried. I was not being kind to you, and your son helped me to see that. I let the little things bother me and he helped me to see that as well. His ball is important to him. I have gone ahead and ordered him a new one and have taken care of the expense. I will call you when it comes in.”
Do you feel what I felt that day? Is your heart about to explode? When we hung up, I sat at my desk and sobbed. My sweet son had done it again.
A few weeks later we received the call that the ball had arrived. Matt was so excited! He had been impatiently waiting and missing his bowling partner. We took him to the shop and unlike the last visit, were welcomed with smiles. Matt proceeded to high-five the manager before being led to the counter where his shiny red and black ball sat waiting for him. Matt yelled out “Woo Hoo” when he saw it. He picked it up, admiring it and as he turned it over something caught my eye. Engraved on the ball was the word “Fireball,” the nickname Matt goes by when he bowls. It’s a special name he was given because he throws his ball so fast it looks like flames as it races down the lane. Emotional mama bear came to the surface and started to cry. This man had not only replaced my son's ball, but he had taken his service to the next level by engraving his name on it.
This moment was elevated by one word. A moment between me and him that I would cherish forever. I will never forget this experience and the magic my son has on people. My son still has that ball and bowls with it every Thursday. And Fireball is still on fire!
If you would like to read this story in full, it can be found in Chapter Seven in my book, "Big People Don’t Pee in the Park- A Mother and Son’s Journey with Down Syndrome."
Envisioning our world without Matt, brings my heart sorrow. And yet sadly, eighty percent of women who receive a pre-Down syndrome diagnosis, don’t feel they are equipped to raise that child, so they are not carried to term. Eighty percent!
I hope to show that this life is not one to fear. That, just as you would with any child, you take each day one at a time. Miracles will happen. Sometimes our children create them, and sometimes they are created because of them. If you become a parent of a child with differing abilities, I’m here to tell you that you will ultimately be amazed by your strength as you help them grow into incredible humans.
Is it hard? Yes! Is it worth it? Yes!!!! You’ll witness amazing transformations as your child impacts and literally changes the lives of others.
And on that note, let's get out there and rock our awesomeness!!
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