Sideline Advocacy

As many parents do on an autumn Saturday morning, I headed to the soccer field to watch my youngest son compete in a match. It was early, chilly, and clear from the very beginning of the game that the competition was tough. Not having extensive knowledge of the game, I typically try to restrict my sideline banter to "Go Knights," or "Way to hustle," or sometimes even "Good job, keeper!"

This game was no different for me, although other parents (from both teams) had plenty to say. Several parents thought that the ref wasn't fairly calling the game, and that seemed to lead to an escalation in sideline tensions. I eventually stood up, forgoing my uncomfortable perch on a flimsy foldable chair in favor of pacing a bit as we watched the boys run up and down the field.

At one point, a boy from each team collided, but the play continued as the ref apparently just didn't realize that there were possible injuries. The sideline erupted with frustrated calls from parents. I hate seeing kids get hurt during games, so I was focused on the field, willing each player to get up and hoping they weren't seriously injured.

Then, the lady next to me called out, perhaps to the ref "How do you just keep running past them? That is so retarded!"

The tension of the game got to me, and I immediately snapped "Hey! That word is not ok!"

She and the woman sitting next to her looked at me, surprised. I was immediately disappointed in my approach, as my words had come off with an edge that I had not intended. But, in the heat of that moment, it was definitely there. I tried again: "Look, I know you're upset, but that is not an appropriate word to use."

The lady sitting next to her came to her defense: "She didn't mean it that way. She doesn't know."

I attempted a smile. "Ok, well, now we know. It's inappropriate. I'm a parent of a child with a disability, and it's not ok to say that."

The lady shot back, "NO, you're just perceiving it the wrong way."

At that point, I stopped. I could have gone on, but I knew that I was just really angry and anything else I would say would make the matter worse. I was seething, though. Yeah, calling her out like that was perhaps not the best approach, but turning it around and trying to make it my problem? Like she had a good reason for using that word that I was just not willing to consider? No. Not cool. She remained fairly quiet through the rest of the match, but at the end of the game (after a full-on parent sideline meltdown, from parents of both teams, which I didn't participate in and was disheartened by), she turned to the parents on our team and loudly declared "All y'all's just rude."

That's the thing with advocacy: it can come off in a rude manner, especially if you find yourself on the other end of it. It can be uncomfortable, and it's not always easy. However, the need for a change generally doesn't come from a place of comfort. While I didn't deliver my message as eloquently as I would like, I still got the word out, loud and clear. Hopefully they truly heard me, and maybe they went home and realized my intentions. We all need to do the hard work to create a kinder, more inclusive place for our kids, and for each other.

Here's hoping that the next soccer match isn't quite as eventful.

Yeah, I'm Asking a Lot

We want our son included.

We want him to have the independence he craves.

We want support to make that inclusion and independence possible.

We want those in supporting roles to not restrict his abilities.


We realize that all of this is a challenge.
We want it done anyway.


We want our community to acknowledge Down syndrome and the individuals experiencing it.

We want all of this done with reverence and consideration.

We appreciate hearing that improvements need to be made when it comes to awareness, acceptance, and respect for those with Down syndrome.

We are frustrated to see that proverbial ball dropped time and time again.


We realize that all of this is a challenge.
We want it done anyway.


We want to be heard without arguments or tired excuses.

We want to be partners, and not ruffle feathers.

We will continue to work, and work, and work.

We will persist, because he is worth it.


We realize that all of this is a challenge.
We want it done anyway.

Alex and His Soccer Pals

Sports are an important part of our culture. They provide entertainment, build communities, encourage strength (mental and physical) and teamwork. There are many benefits to having sports programs, from little leagues clear up to the professional ranks. As with anything, the fascination with athletics varies from person to person, from sport to sport. I'll admit, I'm not a big fan of any one sport. I like to watch certain teams (go Bucks!), and I love the Olympics, but mostly, I can take it or leave it. I do always enjoy the human interest type stories that evolve from the athletes' experiences; often, I think those stories entertain me more than the games themselves.

Five years ago, our very own story began with a local sports team.

In the summer of 2012, I received information about a soccer camp that was being hosted by a nearby high school soccer team. At that point, Alex was the only one of my kids who was old enough to participate, so I asked the organizers how they felt about having a camper with Down syndrome (that was back when I asked; now I typically don't give a heads up and just expect that he will be accepted into community programs). They enthusiastically welcomed him, and one hot summer evening, an almost eight year old Alex showed up to camp.

He promptly refused to play, and we left shortly after that.

The next night, though, we tried again; this time, a high school player took Alex aside and passed a ball back and forth with him. That passing drill somehow evolved into a game of Duck, Duck, Goose. I nervously watched, worried that Alex was distracting the high school player or the other campers, but the coach assured me that he was fine and that as long as he was having fun, that's all that mattered.

He had an absolute blast.

Alex finished that week of camp with a big group of new high school friends. He had a great time, and while he didn't develop many new soccer skills (by his own choice, not because of a lack of effort by the team!), he found something perhaps more important: inclusion and friendship.

Several weeks after the camp, I received an email from the coach, checking in on Alex and asking if there was a way that the team could remain involved with him. We were so touched that they were still thinking about Alex, and we invited the soccer team to join us at the Columbus Buddy Walk that year. We were blown away by their response: the coaches, players, and their family members supported our team, walked with us, posed for photos, and once again illustrated how great inclusion can be. Alex was thrilled to see his new friends again, and the following summer, he returned to camp.

Like the first year, he didn't care for many of the soccer drills, but he had a ton of fun and continued to make new friends, and those new friends once again showed up to support Team Alex at the Buddy Walk. Soon after that, the team decided to host another camp, just for individuals with Down syndrome. This pattern has continued ever since that first year, and as Alex gets older, those friendships grow stronger. Alex's original friends from the team are now college students, but they still make a point to visit with him and exchange hugs and high fives. He feels like he's part of that team, and that's how he's regarded by the players and coaches. It's a remarkable thing to see.

This past summer, as we drove to the first night of soccer camp, I suggested to Alex that maybe he should run the soccer drills rather than play Duck, Duck, Goose. "No, Mom!" he replied. "They like to play Duck, Duck, Goose! That's how they include me." After realizing that he was right, I stayed out of it. These kids get it. Alex is treated like any other kid, but they know when he needs a break or when something needs to be modified (or changed completely!) to suit him. They look after him, and he looks up to them.

Alex started attending the high school soccer games a few years ago, where he sometimes finagles his way to a seat on the bench, to fiercely support each and every player. Perched on that bench with his soccer pals is one of his most favorite places to be. He gives pep talks, he encourages players as they come on and off the field, and he cracks jokes to make his friends laugh.

Last night, we took Alex to see his friends play their last home game of the season, and it was Senior Night. Alex has been around the program as long as this group of seniors has, and he was really excited to celebrate them. He was invited out on the field with the team before the game started, to line up with them as the seniors were recognized, and he gave high fives to everyone as they passed by him. Admittedly, I'm a big cry baby any more, and it doesn't take much to make me cry; I was teary eyed as the tributes the players wrote to their families, teammates, and coaches were read as they walked across the field with their parents. When one of the seniors stopped to give Alex a huge hug, I may have choked back an ugly cry right there in the bleachers. It was such an amazing demonstration of the friendships Alex has developed with the team over the years.

It's our hope that these high school kids, their coaches, and their families know how truly grateful we are for them. Inclusion is not always an easy thing to accomplish, but they pull it off so effortlessly, making Alex feel like part of their soccer family. We look forward to continuing the tradition, and while Al may not attend that particular high school, he will always be one of the biggest fans of that soccer team.

After spending this many years observing at soccer camp, watching my younger son play on his teams, and attending these high school games, I still can't claim to know much about the sport of soccer. What I do know, though, is that it brought my family a beautiful gift of inclusion, and for that, it might just be my very favorite sport.

Nevertheless, He Persisted

Alex, after watching videos of a new Cars inspired race track on YouTube, is convinced that he has to have said track RIGHT THIS MINUTE. He received an Amazon gift card for his birthday, so we looked up the toy to see if he could order it.

The track costs $100.

He was understandably disappointed, but I wasn't about to cough up the $75 needed to complete the purchase. I took the opportunity to stress the importance of doing his chores to earn his allowance, which he could save up for the track.

He wasn't interested. He wants that track NOW.

After I concluded my lesson, he stormed off, and I figured he would stew in his room but soon forget about the track. I was wrong. Instead, he marched up to me with his box of coins, proudly presenting them and asking that I place the order.

I counted $2.50 in quarters, and explained that he still wouldn't have enough to buy the track. He wasn't giving up that easily, though. He spent the next five minutes trying to change my mind, hoping that I would just buy it for him.

"C'mon. You'll be the best mother ever!"

"Count it again. I don't trust you."

"Will you please just get me it??"

"RUDE." With that, he stormed away.

I continued with my work, but heard change rustling downstairs. A few minutes later, Alex returned with more coins in his box. This time, I counted $2.72, and reminded him that he can't just take coins out of my change bowl.

He didn't listen (he's nothing if he's not persistent!), and returned several more times. The last time, he presented $3.37, and an old bobby pin.

"Alex, you have to do your chores and save up to buy the things you want. Mom won't just buy whatever you want, when you want it. Enough!"

He sulked away, recognizing his defeat, and settled in to watch an episode of his favorite show on Netflix. I bookmarked the race track on Amazon so I would remember which one he wants. Santa will need ideas soon enough, right?

We're Listening

As a parent of a child with special needs, I can confidently say most special needs parents have a lot in common, regardless of their children's diagnoses. We are determined. We are strong (physically and mentally!). We are tired. We are amateur experts in several different types of therapies. We are eager to learn as much as we can in order to help our children succeed. Really, we are tired. We celebrate every milestone or accomplishment, no matter how small. We are frustrated because we have to continuously fight every stereotype there is relating to our child's diagnosis. We spend a lot of time driving our kids around from one service to another.

But while we're busy being or doing all of these things, we aren't so wrapped up in our lives that we don't notice things that may be going on around us. We hear you when you bad mouth children with special needs (yes, this happens). We see you when you glance at us with either sympathy (because we must be miserable, dealing with all of this) or disgust (surely there must be something else we can do for our children so that they aren't so awful, right?). We notice when you exchange looks with other parents when our children are having a difficult time (why would we expect our children to be treated as if they are "normal"??). We hear you when you say or write the r-word, and then watch you get defensive when you realize that we heard you (for the record, it's never ok to use that word, and yes, you should still use a different word even if you don't "mean it that way").

Guess what, though? None of your ridiculous behavior gives us pause to stop doing what we're doing for our children. In fact, this nonsense only motivates special needs parents to keep fighting, to continue to push not only our kids to be the best they can be, but to prove that the only thing that needs changing is your attitude towards people with disabilities.

And you know what else? Special needs parents also hear the words of encouragement, share in the smiles, and appreciate the inclusive actions from other parents, kids, teachers, coaches, people who live and work in our communities. These are the actions that overpower all of the negativity, that keep pushing the tired parents to keep going. Because while we know it's necessary, sometimes it's really hard to be "that parent", and that extra bit of support is really what we need to keep fighting.

We're listening. We hear the good, and especially the bad, because we are listening.