Uncategorized – Page 32 – Coffee and Inclusion

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Diva?

I may be nearing diva status. Not the typical diva, one who performs and is celebrated for her vocal talents. Rather, something a little different: a Mom Diva. A Miva? A Dimo? I don’t know. The name really isn’t that important.

Like many mothers, I’m involved in my kids’ activities. I have always been supportive of them and their endeavors, but I have always promised myself that I wouldn’t be that mom. I don’t want to be the obnoxious Dance Mom, the pushy Stage Mom, or the loudmouthed Sports Mom. I really, really don’t want to be any of those people. I just don’t have the time or energy. I see the reality shows; I’ve witnessed acts of hard core mom-ing at my own kids’ events. I want none of it. I’m sure their coaches/instructors appreciate it.

Now, when it comes to school matters, or similar issues, it’s a different story. Any time I find myself in the role of the advocate, I find myself a little bit closer to the diva line. Or, at least, that is how those on the other side of the issue tend to respond, like I’m some prima donna that they have to satisfy just to shut me up. When I get what I want for my kids, what I think is in their best interest (I’m not making unreasonable demands), I feel like I’m regarded as that mom. In this case, I’m ok with it.

I’ve recently found myself at two different events, which didn’t go the way I would have liked, and I was unhappy about it. For once, these issues weren’t directly related to the school, but they were tied to the kids. I found myself all wound up, spouting things like “There needs to be a change!” and “Maybe I just won’t kill myself to participate this year!” Definitely diva-worthy statements; had my hair been longer, I probably would have flipped it.

Who am I kidding, though? Of course I’ll continue to participate, and I’ll suggest changes that will probably be easily dismissed. That will feed the inner diva in me, I’ll throw a couple more hissy fits, and that will be the end of it. Or will it? I haven’t really decided yet. (Is this blog post vague enough for you? Ha!)

Fortunately for everyone, the person who will most likely get to deal with Jen the Diva is my husband. Everyone else will probably see a reserved, maybe scowling, Jen, but don’t let that fool you. I could be just one more frustrating meeting away from becoming a full blown, Real Housewives worthy, diva.

Maybe, at the very least, I’ll get my own tv show…

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Ugh

Ugh. Yep, that about sums up today.

It snowed, again. The kids are refusing to do their homework, and pretty much everything else I ask them to do. I had to attend an unorganized, frustrating meeting (which, for once, had nothing to do with school). I have a crappy cough that won’t go away, for which my doc prescribed a pricey nighttime cough syrup that I’m reluctant to take because I have too much to do to just slurp it down and pass out in bed for the next 10 hours.

Ugh.

So, yeah, this is all I got for today. Super.

Tomorrow is a new day, though, so I will just fumble my way through the rest of today and hope that inspiration strikes tomorrow. Until then, good night…and ugh, again.

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Monday, again.

It’s Monday. We’re all tired, right? And, I want to watch Dancing with the Stars. But, since I’m on this journey to post a blog every day this year, I can’t just bail and let everyone down. So, I’ve decided to share with you my other blog space.

I’m fortunate enough to be working with a wonderful foundation on a new concept which can benefit Buddy Walks across the nation, and part of my job is contributing to their blog. Today during a conference call, I was referred to as the “resident blogger”…way cool!! Please check out my very first blog post on the ds-connex blog.

I hope you’ll enjoy reading it as much as I enjoyed writing it. Until tomorrow, friends.

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Break

While pondering what I should blog about this evening, my lovely husband suggested I write about how he so generously gave me a break this afternoon. I enjoyed the support, so here goes…

Sunday. A time to relax and gear up for the week ahead. We begin our Sundays with church; it is a great way to refocus and find peace after a week of chaos, to recharge and prepare for the upcoming days. This morning was no different. We enjoyed a wonderful service, and were ready to head home and move on to the next part of our day (a trip to the library).

I should totally know, by now, that my best laid plans are quickly revised by Alex.

As we were making our way out of the church, Mr Alex decided (for a still unknown reason) that he wasn’t ready to leave. Instead, he apparently thought it would be more fun to drop to the floor and refuse to move. Good times. We just started working with a behaviorist, who will hopefully guide us in maneuvering these tantrums, so I started to employ some of our newly learned tactics. I let him tantrum. Ad and I stood with him while he sat on the floor, letting him know that he could sit as long as he wanted, but we would still need to walk to the car to go home. He was not impressed. After about ten minutes, I was done. Patience gone. I helped him to his feet and began to assist him in walking down the hall. We made it a few steps and he dropped to a bench. I decided to start over, and let him know that we needed to go to the car so we could go home. This went on for a while, and then my patience was gone again. I hoisted him up and began to carry him out to the car; this is not an easy task when you have 50 pounds of squirming, angry boy in your arms!

After another 10 minutes or so, we made it to the car. Not without a scene in front of visitors to our church from Mexico, of course; it wouldn’t happen any other way. Ha! At least I can giggle about what they must have been thinking as I struggled to get Alex to the car. Oh, well.

When we finally made it to the car, Al would not get buckled. At that point, I didn’t care; we were in the car, and this introvert could, at long last, exhale. Another 10 minutes went by, and Alex was buckled in his seat and ready to go. It took us about a half hour to get to that point.

We made it home, and I went to find Mark (who had stayed home today), and I quickly told him that I was taking Addie out for a lunch date. I needed to get away from the chaos, I was hungry, and I felt like Ad needed rewarded for not complaining once when we were dealing with Al’s latest episode. She helped carry our stuff to the car, she patiently waited, and I felt like treating her to lunch.

Mark instantly recognized that I needed a break, and he accepted the spontaneous change of our afternoon plans without question. He’s awesome like that. He doesn’t spend as much time with the kids, as he works full time (while I work part time and escort the kids to most of their after-school activities), so he doesn’t get to deal with quite as many fits as I do. He knows how much a well-timed getaway is needed to help restore my patience, so he encouraged us to go.

Ad and I had a lovely time at lunch; we did a little shopping, and we returned home. I had a headache (go figure) and spent the rest of the day lounging on the couch, watching basketball. I haven’t had a “lazy day” in a long time. It was nice.

I am very thankful to all of those in our lives that help and support us. Alex can certainly be a handful sometimes (but mostly for me…go figure, again!). I tend to play it off like it either doesn’t happen as much, or that I can easily handle it, but the truth is that it is very difficult. It wears on me. But, because I have a partner who sees right through me and has the insight to not say a word when I decide on a whim to change our plans, I manage it. If not for his support and understanding, this ride would be much wilder.

Now, I’m off to enjoy the last couple of hours of my “lazy day” so I can suit up and be ready to tackle the world tomorrow.

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Hats

From the Duck Pond archives, this was originally posted over a year ago. But, it’s one of my favorite posts, so please indulge me in this “rerun”.

I have a huge head. Not as a result of an overactive ego, just a physically large head. Seems ironic and cruel that I love hats so much; I seem to be on a never ending quest to find a cute, stylish ladies’ hat that actually fits my head. Perhaps this is why I tend to take on so many projects: I want to figuratively “wear many hats”. My list of commitments seems overwhelming to most: stay-at-home-mom to three kids (although, we’re never actually at home), PTO Co-President, leadership representative with a direct sales company, board member, committee member, volunteer, fundraiser. I imagine each one of these as a different hat; some are bright with big feathers, others are more subdued. Perhaps my hardest earned hat is that of “advocate”; my oldest son has Down syndrome. This hat goes from conservative and understated to colorful and wild, depending on the day.

I advocate for my son so many levels. I work with his school to ensure he receives the proper education in an inclusive setting. I oversee his community activities to make sure he is treated as all the other children are treated. I watch him like a hawk on the playground or even in our neighborhood to make sure the other kids are including him in their games. As he gets older, I know it won’t get any easier; my advocacy efforts will focus on workplace equality, or making sure there is a place for him in continuing education opportunities. Sometimes I do these things gracefully and with a calm demeanor, while other times I am “that mom” who ends up taking out all the day’s frustrations on whatever issue is closest at hand with the awkward gusto of an irritated elephant. Either way, I get my point across…eventually. I like to consider myself a “pick your battles” kind of girl, but when it comes to advocating for my son, I will get my way. Patience is a good byproduct of advocacy, but not an easy learned lesson. For every “no” I hear, I have to revamp my argument and efforts until that “no” becomes a “yes”. It can be exhausting. I will do it, every time, if I truly believe that whatever it is I am fighting for will help Alex in any way. Small change or huge impact, I will do it.

I imagine my advocacy “hat” to be slightly tattered, and not as fancy as my other “hats”, but it is by far my favorite. I wear it proudly, and every time I see my son’s smile or hear his laugh, it mends itself and gives me strength to take on my next battle. And battle I will; you can bet your hat on it.

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World Down Syndrome Day

Today (3/21) is World Down Syndrome Day. What does that mean? Well, it’s a day to raise awareness, around the world, about Down syndrome. It’s a time to share about all the awesome accomplishments of individuals with Down syndrome. It’s an opportunity for advocates, like me, to try and show others that my son and his peers are equal and able members of our communities.

The most important thing you can do, to observe World Down Syndrome Day, is to think about how you might promote inclusion for an individual with Down syndrome. Deep down, that is what every individual with Ds wants: to be regarded as a peer, as an equal participant, as someone who can contribute. With the help of their families and friends, they are working so hard for inclusion, for something that anyone who is not considered “different” is readily handed.

We’ll get there. Some day, the voice of the Down syndrome community will be so powerful that we will help everyone understand how important inclusion is, not just for those with Ds and their families, but for everyone. Inclusion matters.

#InclusionMatters

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A Day in the Life of Alex

With World Down Syndrome Day now just hours away, I thought I would give you a glimpse into a typical day for Alex…

Morning
The alarm begins to go off at 6:40am. That time typically comes way too early for me, but Alex is usually quick to hop out of bed. Sure, he may grumble a bit, but he is generally ready to begin his day. He heads downstairs to free his beloved dog, Maisey, from her crate and lets her outside in the backyard. He waits for her, then lets her back inside and (with reminders) gives her breakfast and some fresh water.

By now, the other kids are also awake. The noisy chaos is elevated, as we all scramble through our morning routines. Alex tries to sneak some time on his iPad, and is none too pleased when I remind him that there should be no screen time until he is completely ready for school. I remind him to use the bathroom and get dressed; Maisey dutifully accompanies him to the bathroom, under my supervision, then leads him back out to get dressed.

Once Alex and his siblings are dressed, they have their breakfast. Alex likes to help prepare his scrambled eggs (under my close watch, using the microwave), and he likes to help the other kids with their breakfast, too. As they eat, I make their lunches; Alex packs his lunch most days, but he has started buying on days when the cafeteria offerings are to his liking.

Soon after breakfast, the bus rolls up and carries Al and Ad off to school. Andrew and I wrap up our morning agendas, then I drop him off at preschool and either head to work, or to complete the day’s errands.
Afternoon
Alex spends most of his mornings and afternoons at school, in the third grade. Several hours later, the bus returns Al & Addie and we all reconvene at home, and get ready for the late afternoon/evening activities (either appointments, sports, or dance).

Evening
Once those activities are complete, we return home again for homework, dinner, and baths. Alex enjoys helping with dinner, and often helps to set and clear the table. Shortly after dinner, we begin the bath rotation, and Alex sits down with his dad or I to complete his homework. Once Andrew is sound asleep, it’s Alex’s turn to be tucked into his bed (as the boys share a room, and putting them to bed at the same time is counterproductive!).

Obviously, depending on the day, the month, and even the season, our days can vary. But, what hopefully strikes you about Alex’s schedule is how very similar it is to your family’s schedules. Alex goes to school, helps around the house, participates in activities after school, does homework, fights with his siblings…he does the things most third graders are doing.

So often, Alex gets compared to typically developing children, but only in the categories in which he differs from them (academics, speech abilities, fine and gross motor skills). How many times, though, is he compared to his peers in every day tasks? Not frequently. If we thought about this, about how much he shares in common with everyone, we could all see how much more he is alike his peers than he is different.

This thought is something I hope you’ll consider tomorrow, on World Down Syndrome Day. Let’s embrace our similarities, instead of focusing on our differences. This is the way to a more inclusive community.

My Alex

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Danger

This evening, I was fortunate enough to hear a presentation on Digital Danger by the Digital Innocence Recovery Group, a non-profit organization which offers programming to battle internet-related crimes. My kids’ school guidance counselor hosted this discussion, and I figured it would be worth my time to attend the meeting. Even though my children are still pretty young, in terms of internet usage, I want to be as educated as possible in how I can keep them safe in the technological world.

The internet can offer amazing resources, and frankly, in order to find success as adults our children will need to be quite tech savvy; at least, they will have to be more tech savvy than some of us are now as adults. It was sobering to hear, though, how easily a kid can screw up their future chances in education and employment by their online behavior. Not only can they find themselves in trouble, they can also become a target of the evil that lurks on the internet, in far more ways than I cared to consider before tonight’s discussion.

As daunting as all of this may seem, we can’t shield our kids from technology. Rather, it is imperative that we take an active role in their online activity. Even now, with their limited use of technology at home, my kids know the rules. I hold the password to the Apple IDs on their devices, so that they can’t install any apps without my knowledge. My daughter knows that her dad and I reserve the right to pick up her iPod Touch at any time and read through her texts. She’s had no issue with us doing that (her texts to friends are very sweet and innocent), but hopefully she realizes that this rule will continue for a long, long time. My sons will have the same rules when they begin to text and more regularly use technology. I’m quite certain, that as online resources continue to evolve, their list of rules will only grow.

Overprotective? You better believe it. Tonight’s presentation opened my eyes to something very important: We can’t completely restrict the kids’ technological experiences, but instead, we have to inform them on how to be responsible digital citizens.

What’s one more thing on the “How to Be a Good Parent” list?

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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.

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Sláinte!

Yes, I’m typically one of “those” moms: the kind that can’t let a holiday pass without making a fuss. The overachieving, Pinterest-loving, stress-about-every-detail mom. The more bad-ass mommy bloggers make fun of this type of mom, perhaps as a coping mechanism to make themselves feel better about not making such a fuss.

Let me clarify: I’m not judging, no matter which side of the situation you claim. If you make a big to-do, fantastic. If you don’t, super. Moving on…

In the midst of IEP meetings, my husband landing a fabulous new job, and our everyday chaos, I completely forgot to have the kids make leprechaun traps, buy shirts adorned with shamrocks, and dye their milk green. It just never occurred to me. I started seeing the posts on Facebook last night, though, sharing adorable pictures of all of those things.

Oops.

Here’s the thing, though: they did not even notice. I did not feel bad about it. Life went on.

I dug out green shirts for the kids to wear to school, and that’s about the extent of our St Patrick’s Day celebration. Hey, at least they didn’t spend the day getting pinched, right?

I guess the lesson I learned here is that I don’t have to kill myself to create all these picture perfect holidays. The kids will still enjoy these “minor holidays”, even without all the extra fuss. I’ll still put the effort forth for the big ones (I mean, at this point I can’t abandon the elf hijinks in December), and maybe next year we’ll at least hit the St Patty’s Day parade. But, the point is, if we don’t do all these little things, we’ll all survive. I can give myself permission to skip one of these holidays, here and there, and our world won’t collapse. This realization alone makes this a lucky holiday for me.

I’ll leave you with this:

“May you always have walls for the winds,
a roof for the rain, tea beside the fire,
laughter to cheer you, those you love near you,
and all your heart might desire.”