My Son with Down Syndrome Ran for Student Council Representative

To say that I am a passionate advocate for inclusion may be an understatement. Having a son with Down syndrome has taught me many things, but perhaps the most important lesson is that we must see beyond labels and afford everyone the opportunities they need to truly be included in their communities.

A couple of weeks ago, I noticed in the school's daily email blast that it was time for Student Council elections. I will admit it: I geeked out. I was a Student Council representative in middle school, and held office in high school, and I loved it. You really don't need any special talents or abilities to serve your school as a member of Student Council, so it allows everyone - from the most shy, to the most popular; from the introverted book worm to the star athlete - to feel like they can contribute. Typically, Student Council reps and officers are voted in by their peers, and because everyone gets a vote, everyone gets to participate in the process.

The ever-determined advocate in me decided to pitch the idea to Alex; what a great way for him to get involved at school! After I explained to Al what it was, and what he would do if elected, he decided that he would like to throw his hat in the race. We requested an application packet, and when he brought it home, we got to work. He dictated his answers to the student questionnaire, I wrote them down for him. He selected three teachers to whom he would give the teacher recommendation form; I sent an email alerting them that he would be bringing the form.

Preparing his "campaign speech" was a bit more challenging. He has performed in many school plays and church programs, and has no problem speaking in front of groups of people. However, reading scripts has occasionally proven difficult in the past, so someone has stood by to prompt him through his lines. I requested that either a peer buddy or an aide prompt him during his speech, and we practiced and practiced at home. The morning of the election, I received this photo, showing that he did indeed deliver his speech to persuade his homeroom classmates to vote for him.

Elections results were supposed to be announced today, but I didn't hear an official announcement of the outcome. I can gather, though, that Alex was not elected as his homeroom's Student Council representative. While it would have been incredibly cool to have a student with Down syndrome elected to represent his peers, I'm still very proud of Alex. He accomplished so much just by trying! He showed his peers that he is, indeed, an equal and able member of their class. He demonstrated that all students can easily be included, when modifications are made. He proved, again, that we should constantly be seeking out the abilities of those around us, and not shortchanging them because we don't think they are capable.

Well done, Alex. And don't worry...you can try again next year. #InclusionMatters

November

Several years ago, I started a new year with a goal to blog every day. I was successful; not every post was worthy of reading, but there are 365 posts from 2014. This year, I contemplated participating in the #NaNoWriMo challenge, but decided against it. It's been a long time since I've even blogged, so how would I find time to write a novel?!?

As a compromise, I am going to relaunch my blog and hopefully find (make?) more time to spend at my computer. I have a whole list of ideas, just waiting to take shape on my screen, and I do miss sharing my musings. We'll see how it goes. I do know one thing: this could be the last blog I write on my phone. Hopefully I've caught all the typos...

Happy November!

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.

Writing Again

A few years ago, a dear friend challenged herself to blog every day. She did it, beautifully, and inspired me to do the same the following year. I don't think I did it as well as she did, and while some of my posts probably shouldn't be counted as an entry (I used the ol' "I can't think of anything to write but this totally still counts for today!" line more times than I should admit), I finished out 2014 with 365 new posts.

And then I blogged all of four times in 2015.

I didn't just hit the blogging wall; I crashed into it and laid there, quietly (quiet in the blogosphere, anyway!) for most of the year. I don't even think I was burned out, but I certainly wasn't disciplined enough to keep up a steady writing pace. While I needed some time to reflect on my writing, I regret not blogging more than those four times. Three of those four were pretty decent; two were stories about Alex, and one was a snarky piece about booking a Disney vacation (and from that, I learned that you should never bad mouth that mouse, or anything relating to him, without falling under fast criticism of all his adoring fans...yeesh!).

Last week, I was moved to sit down and open up my blog. With the last day of school quickly approaching, I was inspired to write about my oldest son's final days of elementary school. I pounded out a letter to my Alex; it didn't take me long, but it was heartfelt and I meant every single word. At the suggestion of friends, I submitted it to a couple different online publications...and then I sat in fear that one of them would actually post it. I am a pretty sensitive person, for better or for worse, and I feared that it wouldn't be well received if it was published outside of my little duck pond.

I was wrong to worry.

My piece was picked up, it's been read and shared far and wide, and so far I've only heard positive feedback from it. If there are any naysayers, I'd rather not know. It was way outside of my comfort zone to share my writing, and hopefully I will be brave enough to do it again. I am more than grateful for the enthusiastic response, and for the way that piece has resonated with so many parents. At the very least, I hope this experience will inspire me to sit down and write more when the urge strikes, like I did last week. If nothing else, I hope to have more than four posts for 2016.

To those who encourage me, thank you. Keep doing it, please. I need all the help I can get.

To My Alex, as Elementary School Ends

Dear Alex,

Here it is, the week I've been anticipating since the first day of school. Tomorrow, you begin your very last week of elementary school. Wow. How quickly it arrived, and what a journey it's been.

When you started Kindergarten, six years ago, it was a new experience for both of us. You were excited, probably because it meant a bus ride to and from school and daily access to the school playground. I was optimistic that you would be a rock star, that you would have an awesome time in elementary school. What I didn't realize was how much noise I would have to make in order for you to have the experience that your dad and I envisioned. (You were, and always will be, a total rock star. No worries there.)

Al, your mom doesn't like confrontations. While I may have been blessed with a passion for writing, speaking up is just not my thing. Before you even started Kindergarten, I began to realize that I would just have to get over my reluctance to do that, and fast. Our society tends to operate with the "but we've always done it this way" philosophy, and when someone shows up to change that, it's not always well received. That explains my last six years, in a nutshell. You were not invited to Kindergarten orientation, you were not assigned a "job" in your Kindergarten class, and you did not even have lunch with your Kindergarten classmates. It seems those two words that are repeated throughout all the paperwork that preceded you to school, "Down syndrome", defined your path before you even stepped foot in your school. It wasn't done intentionally to leave you out; this is just how it worked back then.

I was flabbergasted. I had heard stories of children with disabilities not being included, of parents who spent a fortune on special needs attorneys so that their children would have the same opportunities. I blew it all off; we are in an excellent school district, and I refused to believe that we would have to make a fuss just so you could have a turn being "Line Leader" in your Kindergarten class. Yet, there we were. I have always been your advocate, Alex, but it was then that I knew I was going to have to turn up my efforts to make sure we were heard.

We started asking for meetings. I began challenging the standards; with just a few days left, I haven't let up! It is not always received well, and quite often we get the impression that our inquiries are not appreciated and are taken personally. We forged on; if Hoop Jumping was an Olympic sport, I'd be a gold medal contender. We made a lot of progress! You went from a Kindergartner who only joined your peers for a short time each day to a fifth grader who spends most of your day with your peers (as it should be).

It hasn't always been perfect, Alex. There have been many, many bumps along the way. But the beauty of this whole situation is that you love school. You have wonderful friends, and you like your teachers. You have no idea how much of a pain in the butt I've been to the school district. You don't know how often I've (sometimes literally) banged my head on my desk, cried in frustration after reading your assignments that weren't properly modified, or exchanged tense emails with people in the school district. You have no idea how often I've felt discouraged, how I've doubted my advocacy efforts, or how some days I just feel like giving up. But I won't give up, not ever, because of the other things you haven't yet realized. You haven't noticed that although you are learning a ton from your peers, just by being in class with them, they are also learning from you. You have yet to discover that you are teaching people that it's ok to be different. You are unknowingly showing everyone that if we stop to see the ability in all people, great things can happen across the board. Together, we are proving that #InclusionMatters.

There is still a lot of work ahead of us, Buddy. It will continue to be a challenge for me to speak up to ensure you get the education to which you are entitled. Your dad and I will do it, though; we will continue to work hard, behind the scenes, to make sure that you are seen as Alex and not an "SLC kid" or "Downs boy" (we have heard both of those labels, many times, and both make me cringe). You deserve better than that, and I will continue to demand it.

So as you walk the halls on Friday for the Fifth Grade "Clap Out", I will beam with joy and probably fight back some tears, but I won't be sad that you're leaving that building. I am proud of the work we've done there, but it's time to look ahead to the next milestone. We will certainly celebrate your accomplishments of the last six years, but I've already turned my attention to the adventure that is middle school.

Congratulations, Alex. We survived elementary school, you are absolutely a rock star, and I couldn't be prouder. Cheers to you!!

Love, Mom

Oh, how you've grown!!