special needs parenting – Coffee and Inclusion

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

Uncategorized

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.

Uncategorized

Pizza Is Our Friend

Sometimes, I have a momentary lack of judgement as a mother. Today brought one of those times.

Because Andrew needed picked up from day camp at 4pm, I thought it would be the perfect opportunity to go shopping for Father’s Day gifts, since we would already be out.

Right before rush hour.

In the midst of ridiculous construction traffic. (Seriously, close more roads.)

When everyone was tired after a looooooong week.

So, yeah, lack of judgement. But, the kids did want to select treasures to present to their dad on Sunday, so we had to carry on with our mission. After sitting through relentless traffic, we made it to Target, and I discovered that Alex had fallen asleep. Major dilemma! I knew he would be a wreck after waking up, making our cranky shopping trip even worse, but it took us about 35 minutes to go five miles, and I wasn’t about to commit to trying again on Saturday.

We waited about 10 minutes, until Alex groggily agreed to walk into Target, but we weren’t four steps into the store before the kids wreaking havoc. Hanging right by the door was a large collection of Cavs t-shirts, which immediately caught Andrew’s eye. He wanted to give Mark a playoff t-shirt (I talked him out of that one; can you really expect a jilted fan to wear a playoff tee when their team lost??), and then a kids’ t-shirt (again, talked him out of it), all while Alex stealthily moved away from us, hunting for the Hot Wheels. And, as per typical Kearns Target Protocol, Andrew announced loudly that he needed to pee, causing the boys to race to the bathroom.

After bladders were voided, we started our gift hunt once again. Alex, still desperately wanting to find the Hot Wheels (for himself, mind you, not as part of his dad’s gift), planted himself in the middle of an aisle while the younger kids debated on another gift idea. There he sat, in all his angry criss-cross-applesauce glory, while other shoppers pretended to not watch the Kearns Family Circus. Eventually, he was back on his feet and we continued on with our shopping.

Once we finished at Target, we got back into the annoying traffic, and headed toward the grocery store. We were all even more hot and grumpy, and I knew the quick stop at Kroger was going to be a nightmare.

The kids did not disappoint.

They fought over which cart to choose, who would push the cart, what we were buying, through which line we would check out. Alex attempted to run down at least three other shoppers with our cart (and please, for the love of everything pure and good, if he ever tries to do this to you, do NOT smile and say “It’s ok!” while I am reprimanding him…but that’s another blog for another time).

We stumbled back out into the parking lot, loaded up our groceries, and Alex reminded me for the 432nd time that I had promised him a pizza for dinner. Fortunately for him, I was in no mood to cook AND I had a coupon AND I could pick up the pizza to save the delivery charge and tip. I ordered online and decided that I would stop and pick up a little treat for my own dinner while we waited for Al’s pizza. We finally reached our fourth and final stop (hallelujah!): the pizza joint. I pulled out my phone and checked to make sure we weren’t too early, although it had been at least 15 minutes which was plenty of time to make a plain cheese pizza. Right?

Wrong!! Why on earth did they need 65-75 minutes to prepare my takeout order? I had no idea, but I was determined to find out.

I marched the kids inside and pointed at a bench; they must have sensed my exasperation because they all sat down (in birth order, no less!), wide eyed and ready to watch their mom handle the situation.

I began my sob story to the young woman behind the counter: “I ordered 15 minutes ago,” “we’ve sat in traffic all evening,” “my kid has a disability and I promised him this pizza.” I quickly realized that I had draped myself over the counter, arms splayed out as I leaned in (probably looking crazed and scary!), but I went one further: “You’re gonna need to help me out here. I either need a refund, or a pizza, like right now!” I wasn’t rude, as it wasn’t this person’s fault, but it was obvious that I was agitated.

The young woman looked at me with a rather incredulous gaze, quietly asked for my name, and then said “You’re pizza is ready!” I stood up straight, smoothed out my shirt, lifted my chin, and signed the receipt. I then herded the kids back to the car and we once again slid into our place in traffic and eventually made it home.

I could blame the erroneous confirmation email on a wonky automated system, but no. You know why that pizza was ready after 15 minutes and not 65? BECAUSE PIZZA IS OUR FRIEND AND WILL NEVER LET US DOWN. I just know it.

I also know that I really, really need a vacation. Or, at the very least, a day without being imprisoned in my car with all three kids, stuck in traffic.

Yay, summer.

Tag: special needs parenting

Advocacy Doesn’t Get a Holiday

On Top of My Soapbox…Again

Pizza Is Our Friend