When normal ain’t normal…

Is it just me, or has their been an abundance of news stories as of late relating to individuals with Down syndrome? These stories are getting a lot of attention in social media circles…but for (what I think) is the wrong reason.
Today we had this piece floating around…garnering a lot of “LIKES”:

Meet Madeline Stuart

My first reaction upon seeing this headline was “Great!”.

Then I got to the part where the mom says she wants people with Down syndrome to be seen as “sexy”, I cringed a little. I think it’s great to represent and mainstream individuals with Down Syndrome. Increased media exposure helps our society adjust to seeing these people as just normal folks. Seeing these same individuals as sexy bugs me a bit because of consent. I call my daughters “beautiful”, but not “sexy”. It becomes creepy like a pageant mom to me at that point. Just me.

I do think she’s a beautiful girl, I love her confidence and fearlessness. I hope she gets tons of wholesome, catalog work.

Many individuals with Down syndrome are vulnerable throughout their lives. To see them as “sexy” is just a whole new way to objectify them and perhaps victimize them.

Another piece making the rounds the last few weeks was this seemingly sweet headline:

Pennsylvania QB take friend with Down syndrome to prom

What kind of monster wouldn’t find this story endearing and sweet? Well, me. A little.

What this boy did is nice. It’s not heroic. It’s not so out of the realm of “normal” behavior that it warrants national attention, is it? I’m irked that being a decent human being has become exceptionalism in our society. This girl didn’t have ebola. He knew her since childhood. This story reminds me a bit of this “news” item that went around last year before the holidays about the cop who gave a homeless man a pair of boots. How heartwarming. A policeman does something kind. Shocking!

That ain’t news folks. That’s what should be expected. Kindness. Humanity. Helping others. Thinking of the needs of others.

When each person with Down syndrome goes to prom, or graduates high school, makes the swim team, or does something completely normal and it’s national news, we are missing this point of acceptance and inclusion. Sure, these are great moments in anyone’s life, and yes, I know how hard this little girl worked to make the cheerleading squad (as did all of her older sisters), but when we put them on a pedestal and award them with (albeit fleeting) fame, we make it seem miraculous that they were able to accomplish this.

Now try to convince people that your child with Down syndrome is really just like everyone else.

Didn’t your prom photo get 27 million likes?


The Secrets of Raising A Child with Down Syndrome

10acd39f10f35b1c29170d4I surely don’t cast myself as speaking for all parents of child with Down syndrome or any other disability. But there’s some things about raising them that maybe not everyone knows.

It’s so much more expensive, it’s absurd.
When we dreamed about our new child, we never thought for a second that we would be changing diapers for 6 years. Most “mainstream” children in America are housebroken by age 3. Some much earlier, before their second birthday. So that $200 a month on diapers is no longer a financial burden for most. You’re tagged with it for another 4 years. Do the math please, I’m horrible at it.
Also consider the additional laundry, caused by the near-daily “accidents” that happen while at school or overnight.

Think you can throw your kid in any after-school program or the before-school daycare? Not so fast. Your kid requires a 1-on-1 attendant. That is gonna cost you. Finding an opening for a child who is “different” takes more than running down the list a google search yields. It takes calling people you know who can recommend a place, or person. If your child is non-verbal, (i.e., can’t tell you if someone is behaving badly), you can bet that you will want to pay for quality care when you can’t be home. Or…you can really be nuts, like we are, realize it’s easier to have a parent at home. My husband and I have alternated throughout the years. Truth is though, someone gets their career derailed for a while. The family income is reduced, and you are maybe just gettin’ by at times. Or worse.

Don’t even get me started on medical co-pays. (Oh wait, there’s government programs to help with those? See my next point “The extra time it takes.”) The additional medical bills probably vary greatly from family to family, but can devastate you. Once you fall behind, things have a way of snowballing pretty quick.

Through a community program, our daughter received a beautiful brand new bike last year. It’s adaptive, meaning the pedals, handlebars, seat, etc, are all set-up in such a way to make it easiest for her to master. Wonderful program. (Spin For Kids, in Grand Forks, North Dakota) The bike, cost nearly $900. I cringe a little when I see a flyer for Target with a “mainstream” kids’ bike for under $100.
And yet we are lucky. Our daughter’s additional therapeutic and medical expenses for devices are nothing compared to other families whose precious children face even greater challenges in life.

The extra time it takes
Hope you’re patient. All parents say/think this, right? Ohtheyhavenoidea. Want to plan a special activity? Better start telling them about it a couple days in advance. Our daughter loves to look at the calendar or a visual schedule. That’s because transitioning, (going from one activity to the next) is difficult. I repeat myself so often and have for so many years, I feel challenged carrying on conversations with other adults sometimes. I probably say the same instruction a minimum of 3 different ways to try to find one that resonates. I feign enthusiasm. I exaggerate urgency. I exude anticipation. I scream in my car.

Ever heard of an “I.E.P.”? If not, consider yourself lucky. I.E.P. stands for “Individualized Educational Plan”. Plan on taking time off work to attend these in addition to regular conferences at school. First of all, let me say that I think I.E.P.s are a good thing. No, a great thing.
People who went to school, have had experience, and often times a passion for helping kids with special needs have watched your child, listened to you, and have put together a plan of how to address the special individual challenges, and cause positive change. Many times I’ve been relieved that other people see the same things in her that I do, and saddened by the realization that needing this plan is necessary. You’ll sit in meetings with specialists, therapists, teachers, principals, advocates, social workers, paras, and learn a lot. Hopefully laugh a little. (Or a lot, if you retain your sense of humor). You will sign your name a hundred times. You were there. You know the plan. You are okay with using this plan. As a parent, you should know your rights, and stand-up if you see any shortcomings. We learned this firsthand while living in Montana, in a city that has policies to this day that violate the Americans with Disabilities Act. We fought, and won for our child, but nothing changed system-wide for any other kids.

More time is spent try to take advantage of programs that are supposed to help your situation; the county or state programs vary widely depending on where you live. The only common denominator I’ve found is that filling out the bullshit paperwork and interviewing and talking on the phone is a full time job for about 2 to 5 months each year. I’m not even exaggerating, based on our experience. You can’t go to your job and sit on the phone with human services for an hour and a half while you’re on the clock. Also, you’ll spend many evenings completing the paperwork. Oh, and hunting down social security numbers and birth certificates and past I.E.P.s and medical records and bills, and paycheck stubs, and tax returns, and list of contacts, references, and medical practitioners. Some of these will need a notary. Or certification of some sort. Have fun.

Finding a place to play, a playgroup, a family activity, all take longer because your options may be limited. We can’t take our daughter to a movie, for example, because it would not be something she’d tolerate. She can’t sit still for 2 hours, and the light/sound stimulation would prove overwhelming. We tried. It doesn’t work. It’s too expensive to keep trying, so we’ll wait until she shows us she’s ready in other ways. I’m totally okay with that! We’ll just have to stick to the things that do work for her. We’ll go to the pool clear across town. Or the playground 2 towns over. We’ll spend extra time finding whatever works for us.

You are thrown into the role of rabid advocate.
Suddenly you want to scream at people who want to cut special education funding. You are overjoyed and tell people whenever you hear about a spectacular feat by a person with disabilities in the news. You join facebook groups with other parents in the same, special club. You resist the urge to punch mouths that say something is “retarded”.

You’ll tell anyone who will listen about all the ways your child is the same. You’ll argue to lessen the differences.

You might lose friends over this. Balance, my friend.

The Milestones come so hard.
Walking, a year long wait. Riding a bike, 3 year wait. Using a toilet, a 4 year wait.
All those insignificant things that happen to “mainstream” kids at an appointed time become I.E.P. goals and therapy exercises for you. And yes, it is even sweeter and soul-affecting for us.

You’re not a superhero. You are just a person. A person who faces extra challenges. Your challenges pale in comparison to your child’s. Maybe you’re not supposed to be hung up on teaching them things. Maybe you should focus on learning things.

That’s not how it works. That’s not how any of this works.

Today I unfriended someone who was never a friend. I never knew Sue, have never met her face to face. We just have several mutual facebook “friends”. Somewhere at sometime, we became facebook friends. This reminds me, I need to go through and thin out the ‘friend’ list to remove those I don’t really know know. What was I thinking?

But I digress.

Like religion, politics is one of those things you need to figure out for yourself in life if you can really and truly commit to it. I’ve voted for pretty much any party you’ll see on a ballot at one time or another in my life. I’m now some limbo-dwelling Independent, who hopes for the best, tries to “judge” politicians as individuals, and mostly keeps her eye rolls and beliefs to herself. I don’t care for folks who are spouting off their political viewpoint any more than I care for religious people who are constantly bringing up their personal faith. These things are just diversions and crap people like to fight about, and really believe that the other side is evil, and only they have the solution. “Don’t believe us?” You’re either ruining this country or going to hell. Sometimes, if you’re particularly¬†egregious, (i.e. gay, or in a teacher’s union, for example),¬† the fact you are going to hell is also ruining this country.

I’m not anti-religion or anti-government, I just believe civility begins by avoiding conflict. I like peace, what can I say? I like to think about things a lot, and talk about them a little.

So when Sue came up on my personal facebook feed today, I was taken aback by the term “libtard”. Obviously, this is their poor taste attempt and mocking left-leaning individuals, and lumping them in with the now-deemed uncool word “retard”. As though they are mentally deficient to hold their political views. Fine. I get it. “Teabaggers” is nasty too, and makes me cringe a little because of my previously stated thoughts on CIVILITY.

But the word “tard”, or “retard”. Ugh. Why? Why pick the one marginalized group in our society that cannot defend themselves and mock their disability? Oh, because you don’t mean one person in particular, you are dehumanizing everyone with your speech! Touche!

Calling someone a “retard” or another witless form of that, (celebutard, Biebtard, etc.) is mocking individuals like my daughter. You are implying that her opinion and personhood have little or no value. In short, people like her are a joke to you…so just combine the suffix “-tard” with a group or people you wish to ridicule, and let the hilarity commence! How fun!

So here goes. I only post one comment, then unfriend her, but facebook still sends me updates when someone posts to this thread.

I hope William isn't being sarcastic, but I'm feeling gun-shy at this point.
I hope William isn’t being sarcastic, but I’m feeling gun-shy at this point.

So Sue is conservative. She was once affiliated with the Libertarian party, which is why we have mutual friends. She once ran for MN Governor as a Republican. She has a local radio show. But now that William DeBerg has mentioned “libtard” is offensive…someone else is bound to call this out, right?

Let’s continue…

...and the attacking of the William begins. Why?!
…and the attacking of the William begins. Why?!

Now William is admonished to get over it. Apparently his feelings don’t matter in this. Hopefully he’s unfriended Sue by now too. And I don’t know you, but Sue Dettmann Feifert, are you raising bullies? How could you feel so slighted and annoyed by his comment that you are offended? You feel like you’re in junior high? Pure hyperbole nonsense. Gary calls him a skirt and panty wearing man, which we can only see as a slam on his sexuality. MEN don’t get offended by nuttin’.

Surely someone in this feed has sense?
Surely someone in this feed has sense?

I resisted preaching; pasting in something like this long post. Instead, I just wanted to say “Hey, it’s offensive, here’s more about that.”

Why yes, Jeffrey, I AM in fact offended by the n-word. I don’t know that Al Sharpton uses that word, but I don’t really pay much attention to him. It’s a horrible word. Since you brought it up, I’m glad you caught the similarity, because they are both hate speech. More importantly perhaps, show some civility.

Sue Dettman is back to remind us we’re wimps for being offended and faking offense for attention.

I unfriend you.

Happy Monday.