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.

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.

WHY DOES IT HAVE TO BE JUST ONE ISSUE OR ANOTHER??

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.

Why I Advocate

I've always been a quiet person (until you get to know me, I suppose), someone who would rather avoid confrontation than speak up and "cause trouble."

This all changed when I became part of the disability community 13 years ago, as the mother of an awesome kid with Down syndrome. With the birth of my son also came the birth of an advocate: me.

It wasn't an immediate change, as I still struggle of when and how to speak up, but in the last year I've definitely found myself more determined to have my voice heard. Not only have I advocated for my son, but I've gone beyond that to also share my concerns with elected officials in terms of federal and state issues that affect the Down syndrome community and the larger disability community. For the woman who hates phone calls, this was a huge leap outside of my comfort zone, but I did it anyway.

 Calling my Senator to share my thoughts about the proposed repeal of the ACHA, June 2017

I fought through nerves and feeling like I was too inexperienced to make a difference to call, email, fax (thanks, ResistBot!), and tag my elected officials on social media in order to be heard. Why, though? Why would this introverted mess put herself through all of this? How did this stressed out mother of three become an advocate? 

Because...

My head nearly explodes every time I hear someone drop the R-word.

Seriously, folks. It's 2018! Let's get it together. There are other words you can substitute instead of labeling something or someone as "retarded" when you truly mean "ridiculous." Fix it, please, but until you do, I will be here to correct you and let you know why your word choices are inappropriate. 

Others in my community don't understand.

A few months ago, when I was picking up one of my kids from school, another parent came flying in, irritated, and loudly proclaimed "Sorry I'm late, but a handicap bus took six freakin' minutes to unload and I was stuck there behind them!" Had I not been so busy biting my tongue to keep my initial reactions in check, I would have thanked that parent for their patience in allowing a student with a disability to safely get off their bus. But, I stood there, my left eyebrow grazing the ceiling, incredulous that someone would be that ignorant. In this instance, something that allows a child with a disability to safely travel to school was simply dismissed as a burden. So many times the disability community is overlooked because something that helps them could potentially be seen as an inconvenience to everyone else. I've seen this in education and workplace settings, and I'm sure it exists otherwise. It needs to stop, but until others realize that this type of behavior is not acceptable, it won't. Next time I find myself in this situation, I hope I will have enough grace and courage to politely engage and raise awareness. 

My son has the same rights as everyone else.

Until recently, most of my advocacy has centered around my own son and his inclusion at school. Inclusion is a tricky thing, as there is no "one size fits all" formula to enact it in our schools, churches, and workplaces. I am constantly striving to learn how to be a better advocate for my son so that he has the same opportunities as his non-disabled peers. Once his school years are complete, he has the right to to work and participate in his community as an adult, and lately, it seems that some of the supports that will aide him in this have been jeopardized. Although I had very little experience calling my congressmen, I picked up my phone and called to express my concern about this. I am very fortunate to have fantastic mentors so I can continue to learn how to be the best advocate I can be for my son. It is definitely a learning experience, all around, and I am thankful that I have the chance to learn as I go. 

My kids need a strong example to follow.

More than anything, I want my kids to grow up to be confident participants in their communities. They have watched and listened to me make phone calls to Senators, they have asked about the countless emails I have sent, and they have participated in our video messages to our elected officials whom we tag on my social media profiles. I want them to know that their voices can make a difference, no matter what the issue is, and that it is their responsibility and privilege to speak up. They are already on their way to becoming awesome advocates, and I could not be more excited and proud. 

Advocacy, no matter how big or small, can be stressful and tiring. Often times, I am tempted to put off an email to my son's school or a call to my Senator because I am exhausted. But, knowing the impact that can be made, I trudge on, hoping that my quiet, non-confrontational self can make a difference. If nothing else, I have a story to tell, a story that continues to unfold, day after day. Perhaps by sharing a bit of this story, others will be inspired to speak up for those who can't yet speak up for themselves.

This is how change is made. Change is the ultimate goal of advocacy, and it is also the reward. 

Why I Advocate 

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.

Big Announcement

I enjoy writing. I've been told that I'm fairly good at it; at least, my Facebook posts keep people entertained. So much so, in fact, that I've been encouraged many times to write a book.

The thought of that scares the snot out of me.

Why? Not because of the work it takes to write a book, or the very possible chance of rejection by publishers, or the fact that I already can barely keep up with all the projects on my desk. The real reason it scares me is this: people on the internet are mean. Awful, even. I often find myself breaking a major rule of Facebook scrolling (Thou Shalt Not Read the Comments), and some of them really upset me. If I write something that is featured online somewhere, would I be able to handle it if people said terrible things about my writing, or my family? Doubtful. But, that hasn't stopped me from submitting essays I've written to online journals, and so far I've survived the treacherous comment sections after my pieces were published. Because I would probably forever regret it if I didn't try, I've decided that it's time to put pen to paper (er, fingers to keyboard?) and write the message that's been on my heart for a few years.

I've already started outlining my ideas so I can begin to craft the first draft of my book. My book. I'm excited, but may throw up. I'll keep you posted via Facebook. Seriously, though, I have no idea where this will go, but I'm doing it.

Thanks to all who have encouraged me, and hopefully I won't disappoint anyone (read: disappoint myself). For now, keep your fingers crossed, say a little prayer for me, and stay tuned...

Advocacy Doesn't Get a Holiday

When one of your children has disabilities, holidays may not always resemble the traditional celebrations that others enjoy. Independence Day, with all its patriotic fanfare, can be an absolute nightmare for a child with sensory sensitivities (and also for their families). 

For several years, my family has not attended community fireworks displays because the crowds and sounds have just been too much for my son. We have also spent time apart on the holiday so that I could take the younger kids to the parade. This year, we decided to try to spend the holiday together. We decided to watch a local fireworks display at an off-site location, one that was just far away enough to see everything but with a fraction of the noise. We also took a big leap of faith and attended a parade as a family. This was an even bigger deal, because my son tends to associate parades with sirens (as the police cars and fire trucks participate in the parade, and those sirens are just too much for him), but we figured we should give it a try this year. Although he struggled at the beginning of both of these events, he was eventually able to relax and enjoy them, and now even uses words like "awesome" and "best ever" to describe them. That is a major milestone for us!

While we found a way to celebrate the holiday this year, we are still dealing with sensory issues in our own home. Neighbors who choose to terrorize the most vulnerable residents of our community with their illegal fireworks, in order to satisfy their pyromaniac tendencies, make a challenging holiday exponentially worse for families like mine. Last week, after many rounds of pro-firework vs anti-firework posts on our neighborhood Facebook page, it was suggested that we confront neighbors who choose to ignore the laws regarding fireworks, rather than posting passive aggressive complaints online. Last night, I found myself in that situation. I was angry because my kid (and dog!) were terrified, and I decided to address it directly rather than post in the Facebook group and inevitably cause another battle. When I approached a group of neighbors to inquire how much longer their obnoxious antics (which took place one block from my house, sounded way louder than the community display we watched, and caused mass hysteria) would last, I was verbally attacked. They belligerently told me to "relax, it's the 4th of July," and "it's my right as a Vet to celebrate my freedom." When I explained that my son also has rights, the gentleman who described himself as a Vet called me an a**hole. There was absolutely no compassion, no apology, and no respect.  

I was shocked and upset. I wasn't trying to kill their fun; I was requesting that they observe the laws regarding fireworks. They could have celebrated at one of many fireworks displays around town. Their good time should not have superseded common courtesies. My responsibility is to my kids; if I can advocate for my son and raise awareness of a situation (as I know that others in our neighborhood are also struggling with the noisy amateur fireworks), then I will absolutely do it. No one deserves to feel unsafe in their own homes, and yes, that includes people with disabilities. 

Now more than ever, we need to be civil to one another. Acting in kindness would be ideal, but if that is too difficult, I implore you to at least be respectful. When you are stubbornly insisting that you have a right to engage in illegal behavior that is scaring children with disabilities, there is a major problem. If pointing that out to you makes me an "a**hole," then fine, yeah: I'm an a**hole. It's probably not the first time I've been called a name because I've stood up for my kid, and it probably won't be the last time, either.

Waiting for the July 4th parade to begin

On Top of My Soapbox...Again

Sometimes, advocacy just creeps right up on you.

The other night at dinner, we were talking about silly names, and Andrew said he should be called "Mustache McGee". That made me snicker and recall some ridiculous moment from what I remembered as a scene from Saturday Night Live (I later learned that it was actually from a Will Ferrell movie, but whatever). When the kids asked what I was smiling about, I told them it shouldn't be mentioned at the dinner table. Andrew immediately thought I was referring to something with a swear word, and I then had to explain to him that while some words aren't "bad" like swear words, they just aren't nice and shouldn't be used.

"Like 'retard', or 'retarded'?" asked my daughter, her eyes wide.

Whoa. Until then, I naively thought that my kids were just oblivious to that word. They know some swear words, sure, but we don't use the r-word and I didn't think they were really exposed to it. I was wrong.

Addie and Andrew proceeded to tell me that they hear the r-word used on their playground at school. From their stories, it doesn't sound like it's used in a name-calling way, but more like an "Oh, I missed that goal, that's so retarded!" kind of way. I probably shouldn't have been, but I was stunned. But, the kids kept talking.

They told us that they correct people when they hear them use the r-word. We also learned that the accessible playground equipment is monitored by our kids, and when they see someone not using it properly, they speak up.

I was so proud to hear of my young advocates speaking up for what they know is right. But, I was sad to hear that this awful word is still so prevalent among young people. Why aren't more adults standing up against hurtful language?

I think it probably comes down to a few reasons. Topping that list: people still don't understand that the language they choose is important. When I correct someone for throwing out the r-word, I am usually immediately told "I didn't mean it that way". Do yourself a favor, and start paying attention to any derogatory language you use, and then make a real effort to discontinue it. This isn't something you do just for yourself; other people are listening to the words you choose, including your kids. If a child hears their parent saying something, then they probably won't hesitate to repeat it. Most times, they don't know any better, but the adult in this scenario should. This is a difficult transformation to make, but let's give it a try, shall we?

Beyond that, there are probably people who just don't care, and we can just hope that through our advocacy we can continue to change those mindsets. There are most likely others who think their kids would never say such awful things so they don't address it with them. This is a big issue, far beyond language choices. I don't think my kids would ever bully someone, do drugs, or steal from others, but we still have discussions about why those things are wrong. Why aren't we doing that when it comes to issues of respect? Even if you don't think your kids would ever use the r-word, it's still worth a conversation so that they know why it's wrong. This is how we build advocates.

I don't think this is something that will easily go away. Too many people think it's funny to use the r-word, and too many people find it acceptable to disrespect anyone who is different. This will not keep me from spreading awareness, though. From our dinner time conversation, I now know that my kids are on board with me, and for now, I'll take that as a win.

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.

Battles

I got a lot of advice after my son was born and we learned of his Down syndrome.  Suddenly, there were experts ("experts"?) at every turn, offering words of advice on everything from what to feed him, which therapies to start, and even tips for hiring a special needs attorney.

I remember bristling at that suggestion, thinking that if it ever came to the point where we thought we needed an attorney, then the situation would be so off base that we would just remove him from whatever was causing the problem.

Alas, first time mothers often make mistakes on which they later reflect in amazement.

I never imagined that I would have to spend hours revising IEPs, or that I would worry incessantly about the words I chose, so as to not affect the reputation of my family and negatively impact a situation for my other children.  I never thought I would have to nitpick every last detail about my son's schedule, both at school and for extracurricular activities, to ensure the highest level of inclusion.  Some days (years!) I worry more than others; some activities cause more stress than others, while still other situations leave me banging my head against the wall. And, on the flip side, sometimes I find myself in a complete state of astonishment because I don't have to work at all to find the right balance for Alex because the party on the other side of the scenario just gets it (church programs and dance studio, I'm referring to you here...).  That situation doesn't occur often, but when it does, I find myself happy but also frustrated, because shouldn't it be that "easy" all the time?!?

Beggars can't be choosers, though.  I'll enjoy these rare occurrences whenever they arise.

I've seen the term "Warrior Mom" applied to mothers of children on the autism spectrum, but I think it is fitting for all mothers who are fighting for their children.  While mothers of children with special needs might find themselves with more cause to battle schools, government institutions, healthcare companies (the list could go on and on, I'm sure), all moms who advocate for their children are Warrior Moms.  Our armor? The tough skin that you have to develop to take all the nonsense, set backs, and other struggles that come with this territory.

And let's not forget the dads!  I so rarely hear about the fathers of children with special needs and their advocacy efforts.  They may not be the vocal parent at the conference table, but they are just as involved in the process.  Advocacy is definitely not a one-person show.

While Alex has been blessed with many great teachers, therapists, and cheerleaders, we still spend a lot of time making certain that he has every opportunity available.  I tend to be a "pick your battles" kind of mom, except when it comes to matters of inclusion.  I don't mess around there.  I'm trying to relax this summer, and take a break from the constant looking-over-shoulders that I find myself doing during the school year.  So far, it's been difficult to step away; it's now to the point that I feel that I'll miss something if I let my guard down for even a few weeks in the summer.  It's pathetic to think that, right?

I'll always feel that way, though.  I suppose it's just one of the many pieces of this big advocacy puzzle that we're still trying to put together.





 

Socks

Our socks from last year!

Ok, friends, a big day is coming up this week!  Friday, 3/21, is World Down Syndrome Day.  This is an opportunity for advocates of Down syndrome to join together and raise our voices in support of all those included in the Down syndrome community.

Part of this day is the Lots of Socks campaign.  To get people talking about Down syndrome awareness, we're encouraging everyone to wear fun, crazy, mismatched socks.  If somebody asks you why you're wearing colorful, silly socks, take that opportunity to share with them about World Down Syndrome Day (click here for some talking points).

If you are going to participate, I'd love to see photos of Lots of Socks!  I invite you to tweet them to me (@jnfranklin, with #TeamAlex), or post them on this Facebook page (be sure to "like" it first!).

I hope you'll join us!  I can't wait to see pictures.  Here's a sneak peek of the socks my boys will be wearing:

Andrew will wear the red/navy/beige socks; Al, the navy, turquoise/orange.