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.”

 

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

			

When other parents scare me

I try, oh do I try, to never ever judge other parents. But parents, we need to talk. Some of the things you post on social media really make me cringe. Some of the things you post make me feel very sorry for your children.

And I’m trying not to judge.

I’m a member of a few online parenting groups (which are probably 99% moms, with dads rarely represented.) Some groups are very general, open-to-all type groups, some are based upon our proximity, some are based upon our child’s likes or special needs…it pretty much covers the gamut.

For the most part, I like the tips and hacks (though I hate that word; “hacks”), the photos of your child reaching a milestone, the pertinent news items, the jokes and anecdotal stories. I am a pretty frequent commenter; happy to share my ideas or experiences that will hopefully help someone else.

goingbald
Stress? Genetics? A velcro pillow case? A thyroid condition? Normal baby-hair shedding? I give up. …and in the case of parenting, it would seem you have as well.

But there’s a few of you moms out there who mistakenly believe that an internet forum is a safe group of close-knit friends where you can really let all the intimate details of your life fly, oh, and you are also convinced we are a medical community of highly skilled doctors and medical practitioners, who can make a sound medical diagnosis based upon your loose description and a blurry photo you snapped with your iPhone.

Horrifyingly, I saw a post from a mom who asked the group what to do because her baby “is panting and has a fever of 104°”.  Very quickly, loads of comments told her to step away from the computer and get to an ER. The post was removed a short time later by an admin, no doubt because some shocked women really tore into that mom.

dentist
Let me get this straight, you are inquiring if we fellow parents, agree that you should CONTINUE to neglect and postpone dental care for your child? Does it matter what we say?

I mean, I HOPED better for us, as women. It’s one thing to have a horribly “off” day..it’s quite another thing to post it on the Internet and look for support. Women, are we listening to ourselves?

I know it’s wrong to look down on the mom who is wearing fleece Paul Frank pajama pants when she drops her kid off at school. I wouldn’t judge that. That lucky mom maybe gets to work from home. Maybe she’s caring for a sick family member. I don’t know, and it’s none of my business. And only a dick would judge a person who is using food stamps or WIC. Also none of my business. Going to a strange church? Nope. Don’t care. Vote Republican? Vote Democrat? Nope. None of these things would ever make me judge you or not want to be your friend if you are a decent person.

I have been to General Practitioners who've sent me to a Dermatologist for rashes that didn't look this bad. Yet with no tests and no medical history, this virtual room full of liberal arts dropouts are going to nail this diagnosis.
I have been to General Practitioners who’ve sent me to a Dermatologist for rashes that didn’t look this bad. Yet with no tests and no medical history, this virtual room full of liberal arts dropouts are going to nail this diagnosis.

But…there is a line.

When I feel concern for your kid, that’s the line. When you share that your child is suffering, and the only effort you can muster to help them is to post their photo and broadcast their suffering,  I feel for your child. Do you really want to help them, or are you doing it for the attention? For the “likes”? Are these social media parenting groups are just a secret convention for Munchausen syndrome?

Please. Please. In the name of all that is holy, if your child has a medical condition that concerns you (upset tummy, snotty nose, itchy rash), call your local clinic. Ask to speak to a nurse. This trained and experienced medical worker will let you know if a doctor should take a look. If it’s more serious and the child is having a fever, a headache, a large area rash, neck pain, diarrhea and/or vomiting, put them in the car and get to the doctor.

Social media parent groups are great for sharing tips, funny photos, news…even a story about your trip to the doctor…but please, don’t use them for obtaining a medical diagnosis if something has you worried. Be a good proactive parent, lest ye be judged.