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?

Advertisements

3/21 World Down Syndrome Day

Down syndrome. You can spot “them” from across a gymnasium. Their eyes are different…they have a flat nose bridge. They have some kind of learning disability.

And that, dear friend, is all I knew about Down syndrome 8 years ago. And then an individual who happens to have Down syndrome came into my world. It temporarily upheaved my life. Now it’s my norm, and I wouldn’t change a thing. This individual with Down syndrome has made a profound impact upon my life.

But before I describe this impact, I’d like to tell you some other things I now know about Down syndrome. I hope you’ll read this and understand.

March 21, or “3/21” was chosen as World Down Syndrome Day because of the significance of the numbers in that date.  

Most humans have 23 pairs of chromosomes within the nucleus of each cell in their bodies. The genes within these chromosomes give each of us our uniques traits. Individuals with Down syndrome have a little something extra on the 21st set of chromosomes. Instead of this set being a pair, for some random reason, they have triplets here: 3 chromosomes on the 21st set. This is what makes Down syndrome (also called “Trisomy 21”). It happens naturally in humans, in about 1 out of every 700 births. It’s rarely hereditary (less than 1%). The chance of having a baby with Down syndrome increases with maternal age. However, most babies with Down syndrome are born to young mothers…(no doubt since young mothers make the most babies). There is no “cause”. It’s just because.

To clarify: it is not caused by sin, incest, booze, marijuana, or LSD, or any of the other depressingly ignorant notions I’ve seen posted online. It just happens in nature. Like 4-leafed clovers, cleft palletes,  or left-handedness.

So 3/21 was chosen for the 3 and the 21. Now you know! And that makes it easy to remember the date, AND remember some cool sciencey-stuff about human genetic material.

There are about 400,000 people with Down syndrome living in America right now. People with Down syndrome are recognizable. They have unusual almond-shaped and lidded eyes. They are shorter than the average person. Because the previously mentioned chromosomal disorder can affect the thyroid, they may be subject to being overweight.

About half of individuals with Down syndrome are born with a heart defect. Some may require surgery to correct that defect at some point in their lives. Many wear glasses because of eye problems. Hearing can also be an issue. They have elevated incidences of leukemia and Alzheimer’s within their population.

Down syndrome is discovered by either prenatal testing or at birth. About 90% of those diagnosed prenatally are aborted.

In 1910, children with Down syndrome lived to about the age of 9. Today, 80% of adults with Down syndrome reach age 60, and many live much longer. Individuals with Down syndrome are not always happy, nor do they all like to hug or be hugged. They are individuals, just like you and I.

At the risk of stereotyping, there are some traits aside from general appearance that many parents and friends of people will tell you they all share: They love music. They want to fit in and have friends. They can learn to read. They like to make you laugh. They love to laugh. They find what it is they like or enjoy, and stick with it. They are passionate about things. They are stubborn. They are strong-willed. They know what is important in life. They can teach you things you never thought you needed to know.

So for World Down Syndrome Day, I’d just like to say thank you, to my youngest daughter, Presley, who brought Down syndrome front-and-center into my life. And thank you to my husband, Rob, who has taken this journey with me, and been the voice of calm and reason whenever I’ve need it.

Presley having Down syndrome was a surprise. Prenatal testing showed my risk (Eek!), then additional testing ruled it out (Whew!). Then when she was born, Surprise! “Wait…what? This can’t be! They said she didn’t have it!” …And I was shocked and sad and scared, because remember, at that time, I only knew:

Down syndrome. You can spot “them” from across a gymnasium. Their eyes are different…they have a flat nose bridge. They have some kind of learning disability.

But here she was, and I didn’t see “Down syndrome”, I saw this perfect little baby. A baby who had some immediate health concerns and needed the miracle of modern medicine, and a baby who needed me to be there for her. And I had to rise to that challenge. I had to learn what I could about Down syndrome.

Now feel I have to tell other people about Down syndrome so that others understand and “get it”, and don’t fear her or underestimate or discriminate against her. I want her to be accepted and treated like anyone else.

I have to be her advocate. I want people to know Down syndrome is not scary or contagious. You can talk to people with Down syndrome; not at them or over them. You can treat them as you would anyone else.

We have very high expectations for Presley. We want her life to be as normal and average as possible! Individuals with Down syndrome can live independent lives with the right support and assistance. They go to school (yes, college even!), work, and contribute to society. Their cognitive delays are mild to moderate, and educators are working every day to unlock their full potential.

My youngest daughter is just a regular kid. She has challenges. Some things take her longer to master. Those baby milestones came and she passed them all…just sometimes years later than mainstream kids. But she did it. She had to work extra hard; harder than mainstream kids to master her goals.

Did you know that a survey of people with Down syndrome found that 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked? Isn’t that awesome? What the heck is wrong with the rest of us?!

So I understandably laugh a little when I see a news report that refers to someone as “suffering from Down syndrome.” I really don’t think that’s possible. They seem to like themselves and their lives.

Another survey of parents of children with Down syndrome indicated that 99% loved their son or daughter; 97% were proud of them; and 79% felt their outlook on life was more positive because of them.

Today is a great day to learn a little something about Down syndrome…as if I need an excuse to talk about it. It’s changed my life, and truly for the better. I’m still a flawed human, but I have a greater understanding about priorities, love, patience, kindness, equality, and happiness.

Please help me by giving respect to the lives of  those with Down syndrome. Their lives matter. Through respect and understanding, individuals with Down syndrome can have a positive affect on the world, as they do upon the lives they touch: They don’t weaken society. They bring out the best in society.

As Presley would say, “Peace, out.”

 

If you’re pregnant with a child with Down syndrome, I encourage you to keep reading and learn all that you can from many sources. You owe it to yourself to make an informed and educated decision about your baby. You’ll hopefully know more about it than I did when Presley was born. You won’t regret it, I promise.


http://www.ncbi.nlm.nih.gov/pubmed/21910244

http://www.ncbi.nlm.nih.gov/pubmed/21915989
 *There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.   - See more at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/#sthash.oupSI7O0.dpuf

			

In my sketchbook…

So I’m a doodler. I love to have a black marker pen or crayon in my hands. I do it throughout meetings when there’s rarely “real” notes to take. I do it while I’m on a conference call (any phone call, honestly). I do it while I’m watching the hockey game. I do it while my youngest daughter colors along side me.

This is a small progression with a pretty funny, (albeit somewhat creepy-looking), end to it…

A poor pen drawing of the little girl, here in bunny slippers by a sunny window.
A poor pen drawing of the little girl, here in bunny slippers by a sunny window.

So I have this very rough idea in mind for a children’s book. (Very rough…like just developing some fun characters I want to know, and hoping a story pops up). The first character in my story is a little girl. She’s 9 or 10. She’s cute but plain. Lonely. And just found that her mother left a very disappointing note on the kitchen table. I generally just start drawing without really paying close attention, until I come up with something I like, then I develop and go from there.

An OK first attempt, but I thought she was way too tall. I should maybe make her stouter, more cutesy.

Much cuter, but this nightgown looks like she should be a waitress at a truck stop.
Much cuter, but this nightgown looks like she should be a waitress at a truck stop.

Maybe she needs to be a little more plain.

Not going to the right direction here either...
Not going to the right direction here either…

Nope. Too plain. Too young now.

She should perhaps look a little more despondent.

Did you just have a good cry, little girl?
Did you just have a good cry, little girl?

Nah. Try…Irked?

I also came up with a better name than Zou Zou...maybe.
I also came up with a better name than Zou Zou…maybe.

She just looks miffed.

Hmm. The brows could be interesting. Expressive. That's easy.
Hmm. The brows could be interesting. Expressive. That’s easy.

So does she.

A couple of attempts...the window is back for practice...but neither of these are the little girl that can pull off this story...she has to be stronger maybe.
A couple of attempts…the window is back for practice…but neither of these are the little girl that can pull off this story…she has to be stronger maybe.

Maybe make her a little Darker. No, maybe Dressier.

Better dresser. ooh. Do better eyes.

Sleepier eyes.
Sleepier eyes.

…and let’s consider her sidekick I have in mind. A little goat guy named Botis.

Here comes trouble.
Here comes trouble.

A Cocky Botis…

botis2

…and here’s one of the little girl that I started, and then Presley took my pen and worked on her while I stepped out of the room.

Exhibit A: Kids always get into your stuff. It's why you can't have nice things.
Exhibit A: Kids always get into your stuff. It’s why you can’t have nice things.

Darker! Angrier! Yes! Make this story something parents might tell other parents about. Darker…

darkerEmbrace the dark!

scary

Well now she just looks like a child who would hurt a pet.

What about something looser…just in silhouette….

That note her mom left is really having an effect on her mood...
That note her mom left is really having an effect on her mood…

Okay. That’s creepy. But kind of fun. Add in Botis, the window..you know…

Presley strikes again with the marker. "I love mama".
Presley strikes again with the marker. “I love mama”.

Gah! Time to work on a different project…

 

 

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.

The new book…

I am hard at work and in a heavy production cycle for my newest book called “AAAAAAAGH! SPIDER!”. I will hopefully be completed by early February 2015, and the book should be available about that time.

A first-draft of the cover
A first-draft of the cover

I am thinking that maybe I should do a kickstarter.com campaign. The hard work is done, now the rest is just having a budget to get out and promote it; making a media kit and sending it out. It might seem like no big deal, but everything from printing to postage costs money…money that is hard to scrape together yourself sometimes on an artist’s salary!
Maybe I’ll do the social media thing for awhile, hope it takes off, and test the waters.

I am really proud of this book. I think it’s funny and clever, and hopefully other kids and parents will like it. It features a spider, which is my youngest daughter’s (Presley, 8) obsession.

Ending Down syndrome abortions

This blog entry is my off-the-cuff response reply to this op ed in the Times today: 
http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/

Today the New York Times offered up an editorial called “Outlawing Abortion Won’t Help Children with Down Syndrome”. A title like that is sure to draw me in, being both a parent of a child with Down syndrome and a resident of North Dakota.

North Dakota has one abortion provider in the entire state. Continue reading