Sunday, November 25, 2018

Duck, Duck, New Site!

Super exciting news!

This fall, I noticed an opportunity to attend an "adult prom" to benefit a local non-profit, The Mother Ship. This organization provides vital support to mothers of children with disabilities, which is obviously a cause to which I can certainly relate. After looking into details for the event, I noticed a grant opportunity, and after a bit of consideration I decided to apply for funding to upgrade my blog. It's long been a goal to have my own URL, a place I could really make mine and hopefully continue to progress with my writing.

I was beyond honored to be nominated to the Prom Court for this event (joining two other lovely grant finalists), and completely shocked to be crowned Prom Queen...meaning that I had been selected to receive the grant.

Prom Queen!

My new site is currently in the works, and while it will have a new name and look, the duck theme will still be apparent. I can't wait to show you around the new digs, so stay tuned for the "grand opening" of my site!

I am extremely grateful to The Mother Ship and everyone involved in this project. Thank you for sharing in my dream and joining me on this adventure which will (hopefully!) lead to that book that everyone keeps telling me to write. 😉

Saturday, October 13, 2018

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.

Wednesday, October 10, 2018

I Am Aware: Thoughts on Down Syndrome Awareness Month

October is an important month in the Down syndrome community, a time to promote awareness and acceptance by educating our peers and sharing our stories about our loved ones with Down syndrome. I’ve seen many essays and social media posts dedicated to Down Syndrome Awareness Month; so many friends and fellow advocates are doing a wonderful job informing their greater communities about what Down syndrome is. Having celebrated DSAM for many years now, I was struggling with how to promote awareness this month. After much consideration, I discovered that I am very aware of Down syndrome. I mean really, really aware. Because so many facts and advocacy tips are already circulating, I’ve decided that my contribution to Down Syndrome Awareness Month lies somewhere in my own personal experiences.

I am aware that building awareness and acceptance of Down syndrome is a responsibility 365 days a year, not just 31 days in the month of October. Many people have shared that they celebrate their loved ones with Down syndrome every day of the year, so they don’t see the importance of doing it just one month, and I agree with that…to a point. It takes a conscious effort to carefully and consistently educate our families, friends, educators, and community members year round so that this information becomes second nature, and not just something that is pointed out one month a year. However, upping our game during October is a great way to increase our advocacy skills and highlight some major elements and key concepts that we want to share.

I am aware that inclusion is not a “one size fits all” concept. When I advocate for inclusive opportunities for my son, Alex, or share my thoughts about inclusion, I inevitably hear something along the lines of “that would never work for my child.” And I have experienced that, too; after reading about different circumstances, I’ve often thought “that’s amazing…but it would never work for Alex.” And that’s ok! I wouldn’t want an opportunity to not be available for someone else because it wouldn’t work for my family, nor would I want to see something forced on someone else if it wouldn’t be appropriate. Inclusion should be a fluid, customizable concept that benefits an individual, and I think that special education would best function in this manner as well. Supports should look different, because they are serving different individuals, but the big picture should be the same. It is challenging at times, but most certainly worth it.

I am aware that many people have good intentions, yet low expectations. My son has met many wonderful people in his life, most of whom only wish the best for him. I’ve noticed, though, that many of us need to raise our expectations in regards to individuals with disabilities. These individuals can and will accomplish extraordinary feats, but we may never know exactly what they can do until they are encouraged to try and then fully supported.

I am aware that all of my kids are awesome. Our family dynamic is different, and because of that, I’m watching my kids become amazing people. They began learning, at very young ages, that they can advocate for their brother, and other individuals, with Down syndrome…and that their voices matter. I believe that they will only continue to grow as advocates, and that this will benefit them (and all those around them) for the rest of their lives.

I am aware that I am stronger than I ever thought possible, and I have Alex to thank for that. Like my younger kids, I am finding my voice as an advocate, and realizing that my part in this story is a powerful one that can help others. Learning how to advocate is empowering, and knowing that I am making a difference is rewarding.

I am aware that there is a lot of work to do. Advocacy doesn’t end.  I don’t think there will ever be a time when I will sit back and say “Yep. I’ve done all I can for my son, and there’s nothing left to learn.” It just won’t happen. We can all do so much to help our loved ones with Down syndrome flourish, and we can always find ways to help build awareness and acceptance in our communities.

I hope you’ll join me in taking the time to build awareness and acceptance of Down syndrome this month, and also learn how to best educate, support, and include individuals with Down syndrome well after the calendar flips to November.

My reason to celebrate #DSAM

Saturday, September 1, 2018

Raising Expectations: When Alex Performed in a Dance Competition

Alex loves a stage. He enjoys performing, he adores the attention, and he can usually find a willing audience. When my daughter joined the competition team at her dance studio, Alex was eager to follow suit. But, the company program is audition based and requires an intense rehearsal schedule, and Alex simply doesn't have the stamina to participate in that type of program.

We are so fortunate to have a wonderful dance studio and a director who believes in inclusion. Realizing that there are students who aren't quite ready to compete at the company level, yet have a desire to experience some of the privileges that come with company membership, she introduced an Ensemble Company. Dancers in this company are not required to audition, and they take two classes per week and learn a performance piece, which is performed at one competition in the season. To compare, dancers in our studio's company program take at least three classes per week (and often many more!) and compete in 3-5 competitions throughout the season). I was especially excited to learn about this opportunity; I felt like Alex could definitely handle that commitment.

But, being the over thinker that I am, I decided to speak with the director before signing Alex up for the program. I opened with "Do you think this would be appropriate for Alex?" As much as he loves to dance, he has noticeable differences. His low muscle tone makes it nearly impossible for him to point his toes, and he's typically a second or so behind his fellow dancers. I was worried that maybe I was just too excited to him to participate, and I wanted to be realistic. The director, however, didn't miss a beat. "I can't see any reason why Alex couldn't do this," she quickly responded after my initial question. That was it. I figured that if she wasn't worried about it, then I definitely shouldn't be. Sometimes, even our kids' biggest advocates need reassurance from others in our communities, and she definitely provided this for me that day.

Alex became a proud member of the inaugural Ensemble Company at his dance studio. He learned a fun jazz piece, and he worked really hard. Parents in our dance studio are invited to record their dancers' progress at the end of rehearsals, in order to facilitate practice at home. This is such a huge asset for my visual learner! I text those videos to him, and he watches them, over and over, until his choreography is memorized. His teacher has commented that Alex is a student on whom she can always rely on knowing his choreography. Before we knew it, it was April and time for the Ensemble Company to join the other company dancers from our studio at competition.

I think I was more nervous than my dancers. I pride myself on being a low-key dance mom; I'm there to pay the bill and offer encouragement, but everything else is on them. But, knowing that Alex was going to be on stage, dancing in front of so many people who don't get to see how hard he works, terrified me. I considered writing a letter and asking the studio director to send it to the competition organizers, to give the judges a heads up about Alex and his Down syndrome. I just didn't want them to be mean in their comments; I didn't want to risk killing his excitement for dance because a stranger too harshly judged him. After a lot of thought, and more reassurance from our studio's director that it would all be just fine, I let it go. In the end, I realized that I didn't want them to set their expectations too low, before even having a chance to see the performance.

Alex was so proud that day to spend time with all of the company dancers from our studio, and to cheer them on in their performances. Eventually, it was his group's turn, and he received tremendous support from his dance friends. They showed him just as much enthusiasm as he'd shown them, and it was fantastic. I nervously stood in the audience (there was no way I could sit still in a chair!) and watched as he took the stage. Once the music started, and he began performing his choreography, the crowd began to cheer for him. I will never forget the moment he realized they were cheering for him and his group; his whole face lit up.

While their performance was amazing, and it was so fun to hear their scores, one of the best moments came as we were preparing to leave the competition for the day. We were walking through the building, on our way to pack up to leave, and Alex was carrying his award. Still in his costume and beaming from his latest accomplishment, Al was stopped by another dancer at the competition. She gave him a big hug, exclaiming "You did a great job!" She then quickly went on her way, and I asked Alex if he knew her from school. He had no idea who she was. How remarkable, in such a competitive environment, for another young dancer to stop and offer encouragement to Alex!

Advocacy can truly be absolutely exhausting; ensuring that Alex has every opportunity he deserves as he grows up is a lot of work. As tiring as it can be, though, these little moments of pure awesomeness really make it worth all the stress. Not only are these experiences good for Alex and our family, they are also great for everyone else who gets to witness them. We are raising awareness that people with Down syndrome are capable of so much, and in turn, we are raising expectations. These instances are exactly why inclusion matters.

Alex is looking forward to starting the new dance season soon, where he'll once again be a member of the Ensemble Company. We can't wait to see him shine, both on the stage and off.

Friday, May 4, 2018

When Kindness Isn't Enough

In our current culture, we cannot underestimate the importance of being kind. "Kind Is the New Cool" is the motto that my 11-year-old daughter has adopted in her advocacy efforts, and I hear myself constantly reminding all three of my kids that kindness counts.

But for my teenage son with Down syndrome, sometimes kindness just isn't enough.

Alex is a fortunate kid, in that he has many acquaintances at school and in our community. He receives plenty of high fives in the school hallways, and he hears many enthusiastic "hellos" when he passes a familiar face in the grocery store. He is constantly met with kindness, and for that, we are very grateful.

While we teach our children to be kind, how often are we teaching them to actually be a friend? To invite a peer to hang out after school, or join their "friend group" for ice cream? To respectfully speak to their peers with dignity? Not long ago, we ran into a schoolmate while we were out running errands. This young person cheerfully greeted my daughter, and then also spoke to Alex. With my daughter, she used her typical tone of voice, but with my son, she spoke in a high-pitched tone. She talked to him like he was a two year old, even though he's actually two years older than her. In the middle of her conversation, he shot me a look that clearly said "Really?!" My daughter was visibly troubled by the exchange, as well. It can be somewhat exasperating for all of us because we know that people have the best intentions, but we do wonder when the realization will hit that Alex is just a kid who wants to be treated like everyone else.

It's a tricky situation.

Alex enjoys those cheerful greetings and generous high fives, but just like any kid does, he longs for the day when there will be a knock at the front door from one of his friends, asking him to play. He looks forward to the time when he'll bring home a birthday party invitation. He dreams of having a group of friends that include him because he's a loyal, fun, genuine kid. As his mother, I spend a lot of time agonizing over how we can help him make these authentic connections, without embarrassing him (he is a teenager, after all!), and without seeming like a creepy, helicopter parent for trying to set up friendships for my teen.

While I continue to chew on that quandary, here's what parents can do to help families like mine: encourage your kids to not only be kind to everyone, but to also truly include everyone. Help them reach out to kids like Alex, to build true friendships. Teach them to be just as loyal a friend that Alex would be, and urge them to do it because Alex is worthy of having friends, not because it would make a great viral story on social media.

When we can master awareness and kindness, and move beyond those essential elements, we can enjoy true inclusion. How magical that would be!

Alex and Addie - siblings and BFFs

Tuesday, March 20, 2018

When the Ordinary is Extraordinary

Last week, Alex overslept (the time change is hard!) and missed his bus, so I drove him to school. We pulled into the designated car drop off line, and when it was our turn, he gave me a quick "Bye, Mom!" and then jumped out of the car and hurried into the school. I watched him walk into the building before I drove away, but knew that he would go straight to his locker, put away his coat and gather his supplies, and then report to his homeroom.

All on his own.

Without me hovering.

He did what most every other middle schooler did that morning.

It was so simple, yet so remarkable, all at the same time. I'd be lying if I said I didn't tear up when I drove away. Not because he doesn't need me anymore, but because so many people have doubted him, from the second he was born, but there he was...being a typical teenage kid, going to school, just like his peers. Down syndrome isn't holding him back like we once worried it would. Sure, he needs extra time and support, but he has proved time and time again that he is capable. He can do hard things, just like the rest of us.

This World Down Syndrome Day (3.21.18), I hope for even more ordinary moments. I want to see him accomplishing all of the plain, boring things that teenagers and young adults do. School work, sports, clubs, friends; I want to see him be included in all of the mundane activities that most of us take for granted.

I want to see him continue to exceed expectations.

All on his own.

Without me hovering.

I'll just have to remember to keep extra tissues in my bag.

Sunday, February 18, 2018

It's Time to Do the Hard Work

The days following a national tragedy are often full of suggestions on how exactly we should remedy whatever caused the incident. All too often, we're debating how to address the issue of mass shootings in our country. Clearly, it's an issue, and there are several factors that are frequently offered as the culprit. In the days following the Parkland shooting, I've heard many theories tossed around and I've seen many social media posts which insist that the problem at hand can be solved by addressing one issue or another. Gun control, services for mental illness, social media, and bad parenting have each been touted as the ONE SINGLE ISSUE that needs to be addressed in order to fix this horrible epidemic in our country. Many debates and arguments have followed, and insults often accompany these conversations.

Those who argue that stricter gun control is the solution are torn down by people who say that mental illness is the cause and that guns have nothing to do with the issue. Those people are then ridiculed by others who blame social media for hyping the issues and bringing too much negative attention to the table, but those theories are tossed aside by people who insist that the lack of strong parenting is the underlying factor to all of this violence.


Seriously, I don't understand this, not at all. Before anything can really be accomplished, we need to admit that there is more than one issue at play, and call on our elected officials to address whatever it is that we feel is the best starting point. For me, that's stricter gun control. It should not be as easy as it currently is to obtain a gun and enough ammunition to shoot up a school. It just shouldn't. If you're a responsible gun owner, I don't understand why the idea of stricter laws bothers you. And the "bad guys will always find a way to get guns" argument is tired and weak. People don't always wear their seat belts, and they certainly don't always drive the speed limit, but we still have laws for those things. Should we just not have any laws? I promise you that there will always be people who break them. But, if stricter gun control prevents even one more senseless death, then I'm all for it.

For those who argue that better mental health services are necessary to curb the gun violence incidents, I understand your argument and I agree that yes, there should be more assistance available for those who are struggling. But how does that not go hand in hand with stricter gun control when we're talking about reducing the occurrence of mass shootings in this country? Further, I would argue that gun violence is not an automatic result of mental illness, and to perpetuate that belief is dangerous and uninformed.

If you believe that social media is fueling the fire and causing more gun violence, then I invite you to step away from your screen and stop engaging in all the online debates. Social media can be a really ugly place, but that's because of the people who make it that way. There are many advantages to having a strong online social network, but you have to be aware and carefully maintain those relationships. Social media is not the root cause of all the violence. It may contribute, but mass shootings were happening well before billions of people started sharing cat memes on Facebook.

Parent shaming makes me really sad. Should we be involved parents? Absolutely. I believe that most of us try to do just that. I am a major proponent of teaching children to be respectful, modest, and kind. I try to do that with my children; if I instill nothing else, I hope they all understand how important those three things are. I hope that others share that philosophy, but I don't dare think that shaming people into being better parents will magically end gun violence. It may make kids more pleasant to be around when they aren't being supervised in public (teenagers in malls and restaurants without your parents, I'm looking at you...), but it won't end gun violence. Let's figure out a way for parents to be more involved in our kids' schools, from grade school all the way through high school. I'm shocked by how many people dismiss the idea of parent organizations at the high school level, yet complain that other parents don't know what their kids are experiencing. It just doesn't make sense to me.

While I obviously see a hierarchy of issues here, I truly believe that this is indeed a multifaceted issue, and by insisting that we only address one issue or another, we are doing a disservice to every single person affected by these tragedies. If we only address one thing at a time, we'll get no where. If we consider each of these things (and probably other elements that I haven't listed) at the same time, and acknowledge that there is a LOT of work to do, AND be willing to do some of that work, just imagine the change we can bring to our country.

We must take the lead of the high school students in Florida who have chosen to use their grief as a way to advocate for change. Call, write, email, and tweet at your elected officials. All of them: national, state, and local. If you want more gun laws and more mental health services, make that known. Stronger parenting, on its own, may not end gun violence but it would make our society a better place, engage in that and be an example. This is how we'll make a difference. It won't happen solely by debating strangers on Facebook, but if we perform our civic duties and make our voices heard, we can do some of the hard work that must be done.