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#JFKpositive365

In addition to writing more in 2017, I’m also challenging myself to recognize the positive moments that occur each day. Big or small, I’m hoping these moments will help me balance out the chaotic, overwhelming nonsense that tends to crowd my mind. (Ah, the glamorous life of a special needs parent!)

The first entry in this exercise? FaceTiming with Alex earlier this evening. As difficult as he can be, he always tells me his misses me when we are apart.

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My Son with Down Syndrome Ran for Student Council…

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

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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!

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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.

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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.

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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!!

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Thank You, Barbara

Technology is great, until it doesn’t work the way it it should; I think we’d all agree on that. We had one of those issues last night, when we discovered our satellite was no longer working. No TV on a Monday night? That meant missing Dancing with the Stars, which in this house is just unacceptable.

I checked all the cables, and the satellite dish itself, and concluded that either the dish is fried, or that there was some universal issue with DirecTV. I just didn’t have it in me to call customer service last night, so I just checked out the DirecTV Facebook page to see if anyone else was reporting a similar issue. They weren’t (why would it be that easy??), but they were reporting awful instances of long hold times and rude representatives.

I was so not looking forward to making that call to DirecTV for help.

Of course, most people only post things like that when they are unhappy, so I realized that there were probably many more happy customers than unhappy. I still didn’t have the energy to deal with it. I decided to just stream Netflix from my phone and hope that the satellite would magically fix itself.

That didn’t happen.

So, this afternoon I reluctantly dialed the customer service number, bracing myself for many minutes of awful hold music. Surprisingly, though, I got through to a representative not long after I dialed in. That was all well and good, but certainly I wouldn’t luck out twice, so I anticipated being met with a grumpy, impatient rep on the other end of the call.

Wrong, again.

A lovely rep, Barbara in Mississippi, walked me through several troubleshooting tips, but we had no luck. Just as she was trying to determine how quickly she could get a tech out to service the equipment, Alex started pulling on my arm.

“Mommy!! Tell her it was working yesterday, and then it didn’t, and I couldn’t watch Dancing with the Stars!!”

Barbara heard Alex repeat this statement many times before commenting on my “little helper”, and she asked how old he is. I figured that she thought he was much younger, so I told her that he’s 11, but that he has Down syndrome, and that he was just furious that he had to miss his favorite show. She laughed, then paused and said “If it makes you feel any better, my sister has Down syndrome, so I completely understand that.”

She went on to schedule our service call, then thanked me for calling in today, saying that she “really needed this call”. Her sister had been on her mind lately, she said, and she was happy to learn about Alex. She then told me that we could stream DWTS on the computer so he wouldn’t have to miss tonight’s two hour episode, and then she wrapped up by saying “Kiss your angel for me!”

I always find it interesting how we make these random connections with others in the Down syndrome community, seemingly just by luck. Last night, as Alex helped me pay for something, we learned that the gentleman helping us has a brother with Down syndrome. He beamed as he spoke with Alex; I could tell that he is quite fond of his brother. We could have picked up dinner from a number of places, but we were drawn to that restaurant, where this gentleman chatted with Alex. I could have called DirecTV last night, but I might not have been able to connect with Barbara. I’m glad these things worked out the way they did.

Thank you, Barbara, for your excellent service (and I will make sure that DirecTV knows about this, too). Alex quite happily watched clips from DWTS on his iPad tonight, although he made it quite clear that he misses watching it on the real TV. I guess the die-hard fans are a little particular about how they watch their favorite shows, right?

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He’s Faking It

Alex and the coveted basketball

Tonight, the boys and I headed over to the mall for dinner in the food court, as part of a school event. We had a relaxing meal with friends, then made our way to the book store for story time with the teachers. Both kids enjoyed their leisurely strolls up and down the aisles in the children’s section of the store, eventually choosing a couple of titles to take home. (I mean, they were excited over books. BOOKS! And, it benefited the school. How could I say no to that?!? Well played, school.)

Once I finally convinced the boys that it was time to leave, we attempted to make an exit from the mall, but we were sucked into a new store. Mesmerized by the glowing basketball in the shiny new Dick’s Sporting Goods sign, the kids made a beeline into the tidy rows of athletic wear. Alex declared that he was looking for a new basketball, and then told me I could buy it for him.

Enter teachable moment. Or so I thought…

After finding a ball he liked (a nice Under Armour basketball), Al started making his way to the check out. “Hang on there, dude. I am not buying a new basketball for you tonight. It’s nice, but we’ll have to get it another day. Let’s put it back.”

“Nope,” came his quick reply. “I’ll buy it with my own monies.”

I sighed. Loudly. It had been a long day, and it wasn’t over yet. “How about we tell Santa?”, I almost-too-desperately called after him. He stopped. Score!!

“Yes. Let’s take a picture and email it to Santa!” Alex was elated. I thought of the cute blog post I could whip up after the kids fell asleep tonight. Win win, right?

We snapped the photo, and I again asked him to put the ball away. “Nope. I gotta give it to a guy.”

Here we go. I was just plain exasperated at this point. I was losing this battle. I figured I should just hear him out and let him give the stinking ball back to someone who worked there, and decided to chalk it up as an opportunity to practice social skills.

He marched right up to a sales associate, and no sooner than the guy said “Hey, buddy!” did Al hold that ball out and say “I want this for Christmas. Will you tell Santa?”

Up went my left eyebrow, and I frantically looked up at the sales guy. His reaction was going to make an important impression on Alex. Please don’t blow this, Mr Sales Guy.

“I will tell Santa!! I will go call him right now!” The guy didn’t miss a beat. Al beamed. I let out the breath that I didn’t realize I was holding until then.

I suggested, for the third time, that Alex put the ball back on its shelf. As he triumphantly marched away, I looked at the sales guy and said “Thanks! I appreciate your response to him,” and turned to watch Al make his way back towards me.

Later, after finally dragging them out of the mall, Alex and I were waiting while Andrew got his hair cut. Al was flipping through the photos on my phone, and stopped on the picture we had just taken earlier, with the basketball.

“How cool is it that the guy called Santa to tell him about this ball?!?” Apparently, I thought it was way cooler than Al did, because he quickly responded.

“Nah. He was faking it.”

I let that statement fall flat, which took a lot of effort, because I guess I’m not ready for Alex to let go of Santa quite yet. It could easily happen at this point, for any of my kids, as they are all getting older. Too old, and too smart, for their own good.

Whether he truly still believes or not, I really do appreciate the sales guy (Tommy, at the Polaris store, if anyone local is wondering) for his quick thinking and cooperation. There aren’t many that would have played along, but he did, and that was very cool.

And yes, I will go back for the ball, so that Santa really can leave it under our tree for Alex…

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I’m Back, Baby

So, yeah. In 2014, I vowed to blog every day, and I did it, posting 365 times. Now, in 2015, I’ve posted twice (including this one). Such is life, right? But, I miss my daily writing ritual, and while I can’t promise to publish something every day, I do hope to get back into the habit.

You’ll have to excuse the dust; not much has been going on around here lately. In fact, my last attempt at sharing my gift of snark was back in January, after which I quickly learned that those who criticize anything Disney related are not received well on social media. I will (probably) refrain from discussing my thoughts on that topic, in the near future, at least.

I look forward to writing again, and I have dreams of creating a much bigger duck pond for us to hang out in as we laugh about my daily adventures. Until later, friends.

Yours in chaos,

Jen

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How to Book a Vacation in 205 Easy Steps

Vacations, while well deserved and exciting, can also be very overwhelming…especially when you are in the planning stages. Add in a child with special needs, and the whole process becomes exponentially more difficult. Never fear, though! After deciding to take the kids on a fun-filled trip to Disney World this spring, and experiencing the joy of planning the adventure, I’ve put together a handy list to help you plan your own magical vacation.

1. Decide to (finally) take a vacation and return to the “happiest place on earth”. I mean, it’s been five years, so you can surely suck it up and have some “fun”, right?

2-52. Change your mind. Fifty times. Your thoughts should alternate between “Who in their right mind would spend that kind of money on a vacation?!?” and “The kids are only little once, and we’ve been promising a return trip. We’re going.”

53. Ask your partner to research resorts and travel packages. Wait a week and ask again.

54. Refuse to look at the information your partner has found, because it’s Disney, and You. Just. Can’t.

55. Repeat steps 2-52 again.

105. Decide, again, that you really should go, and freak out in front of your partner because now you’ve waited so late that you probably won’t get character dining reservations and you’ve probably ruined your children’s magical adventure.

106. Apologize to your partner.

107. Find a place to board the dog. I mean, if no one can take care of the pup while you’re gone, then you can’t go anyway.

108. Book luxury accommodations for the dog. At least she’ll enjoy her vacation.

109. Look at the Disney website for the eight zillionith time and finally decide on a resort.

110. Pour over the list of dining options, try to decipher which one has which character experiences, get mad because the website does not give enough information, and then throw the keyboard out of desperation.

111. Sit in the corner, softly beat your head against the wall and hum “It’s a Small World” quietly, to yourself.

112. Apologize to your partner…again.

113. Discover the chat feature on the Disney website. Inundate the customer service representative with questions, and imagine that he is now banging his head against the wall.

114. Stay up all night, unable to sleep because you’re immediately regretting your decision.

115. Spend the next eight weeks obsessing over the plans you’ve made. Will the park be too overwhelming for your kiddo with special needs? Will anyone have any fun? Will you find enough wine in or around the theme parks?!?

116-201: Read every Disney blog you can find. Decide that you’re the worst Disney vacation planner ever, threaten not to go, change your mind and reassure yourself that it will all be just fine. Repeat 85 times.

202. Try to find matching Disney themed outfits for your entire family. Give up. Nobody will see past their adorably smiling faces in the photos, anyway.

203. Worry incessantly about the lack of accommodations for your child with special needs. Get angry at all the people who pretended to need special accommodations and ruined it for those of us who truly need them. Fantasize that those people step in gum the next time they go to Disney.

204. Finally, finally, finally book all your reservations. Take many, many deep breaths.

205. Repeat as many times as often: “It will be a magical vacation. It will be a magical vacation.”

See how easy it is? Best of luck in your planning.