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?

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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.”

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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.

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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

The Secrets of Raising A Child with Down Syndrome

I 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.

Dear Future Mom…

Great. I got something in my eyes again. Really lovely video created for World Down Syndrome Day last year.

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.

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?!

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?

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.

Inspired by my youngest daughter…

Presley made this with her self-proclaimed "best friend" (and nanny) Jessica. I get inspired by their fridge art.

As you probably know, our youngest daughter has Down syndrome. My new book, “Aaaaaaagh! Spider!” (which should be out in a couple of weeks), was totally inspired by Presley’s obsession with spiders. She will check out books about tarantulas from the library, but refuse to open the books. It’s a funny joke, I think. She will also seek out spider videos on YouTube, then hit play and run to the far corner of the room to watch as the video plays. Absurd.
I included the url for http://www.r-word.orgr-word.org on the dedication page of my new book. I think it’s a great movement. I would love to see language and attitudes take a positive shift in our lifetime. She is the reason for that nod and this whole book.

Feeling blessed, thankful, and honored

I am generally brought to tears whenever I check my email and some amazingly kind and thoughtful person has taken the time to drop me a line about the book.

It doesn’t happen every day, but I do hear from folks a few times each month, and it really just makes my day. A reader in Ireland recently dropped me a line, and said:

“I wanted to send you a note to thank you for this incredible book. I am the mum of an amazing little boy,, he is 17 months old, a bundle of love and cuddles and complete annoyance to his big 4 year old sister as all little brothers are!! Noah has Down Syndrome and a friend of mine gave me your book “What I Want You To Know” as a present.

I adore my little boy so I did not read the book to necessarily find answers or acceptance but I find myself reaching for this book all the time! It is beside my bed and I regularly fall asleep with a smile on my face after looking through the illustrations and the fantastic interpretations of the life of a smallie – I especially love the one with the little superhero as [my son] looks a little like the illustration and he truly is my hero! I can relate to so many of the pages in this book and I imagine it will come with me always.

Thank you for being a mum who pushed so hard to get this out into the hands of other parents. I think people handle this new world that is offered to them with many different approaches and perspectives, I am very grateful for my amazing family and I look forward to many adventures, I am now ready to smell the flowers, the grass, the trees while wearing our woolly hats in summer and even find some time for dancing all the way home : )

Thank you,
CS
Ireland

No, thank you! Words can’t express what a privilege it is to hear from you.

Thank you to any one who has taken a few minutes to read my simple little book, and share it with others. Being a new parent can be so hard, I am happy that some comfort can be taken away from the book.

 

I’m going to go give Presley a big hug and kiss now!