I Step Up Because A Life With Down Syndrome Is a Life Worth Living


“God only gives special children to special people.” “We are never given more than we can handle.” It’s meant to be comforting, but it feels like people are saying, “You should be held to a higher standard, you should bear more than others, this happened to you because you deserve it.”

When it looked like we might lose the baby, my doctor suggested non-invasive prenatal testing to determine a cause and any possible treatments.  While we waited for the results of our prenatal testing, I searched the internet for information about the possible results, especially Down syndrome. I read about heart defects, special education battles, necessary therapies that are not covered by insurance, blatant discrimination. There were videos and memes mocking people with Down syndrome. A woman commented on a message board that her twin brother had Down syndrome and had been institutionalized his entire life – she said she…

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Random Acts of Kindness

I believe that our small acts can create that fundamental change, a ripple effect as people go about their day, seeing the kindness around them and passing it along to others.

Having a child with Down syndrome is challenging, for sure. But raising a child with special needs has brought many blessings into my life as well. I am especially thankful for the kindness we have received within the Down syndrome community and our community-at-large. I know this kindness existed prior to Evelyn. The world didn’t become kinder, I just became aware of the kindness that existed around me.

Prior to Evelyn’s birth, I kept to myself.  I had a few close friends, but I wasn’t interested in forming more relationships.  I didn’t see the point.   But when Evelyn was born, I longed to connect with people who would understand what I was going through and not judge me for the the feelings I was experiencing.  This need drove me out of my comfort zone and into the social arena.  I attended playgroups and Mom’s Night Out.  I joined online groups for parents of children with Ds and other disabilities.  I shared my true self with other parents, and they shared theirs.  Because I was open to meeting new people, I have been introduced to so many kind, thoughtful, supportive parents.  Yes, these people were out there all along, and Down syndrome gave me the push I needed to go out and find them.  This change carried over to all areas of my life, which is now full of kind people.

Small acts of kindness can be uplifting!
Small acts of kindness can be uplifting!

Having Evelyn changed my perception of people with disabilities.  Previously, I would have been apprehensive about approaching people with intellectual disabilities – worried that I would say or do the wrong thing, offend them and embarrass myself.  As a result, I didn’t interact with people with disabilities.  I now understand that people with disabilities are the same as everyone else.  Yes, some people might be offended when I put my foot in my mouth, disability or not, but most people will give me the benefit of the doubt.  I am lucky enough to interact with people with Down syndrome frequently through my work, and I am thankful for all of the kind words, gestures and hugs I’ve received, and everything they have been patient enough to teach me (like how to use instagram, and the art of comedic timing).

And the strangers!  So many people go out of their way to share kind words and smiles with Evelyn.  Complete strangers make the effort to let her know they welcome and accept her.

All of this was there, waiting to be discovered.  I just didn’t bother looking for it before Evelyn.  I’ve been given a fantastic gift – a change in perspective.  I’ve been able to slow down and appreciate all the kindness around me.  And when a person gets a chance to experience kindness, its natural to want to pass it on.  It’s a fundamental shift to want to share that gift with someone else.

Tomorrow is World Down Syndrome Day (WDSD), a global awareness day that is officially recognized by the United Nations and is dedicated to raising awareness and promoting acceptance of people with Down syndrome.  This year, to celebrate WDSD, our family will be teaming up with our local Down Syndrome Association to commit Random Acts of Kindness throughout or community.  I believe that our small acts will create that fundamental change, a ripple effect as people go about their day, seeing the kindness around them and passing it along to others.  I think it’s the perfect way to honor someone who opened my eyes to the kindness around me.  Maybe tomorrow, we can all make an effort to notice that kindness, great and small, and pass it on to someone else.  I think you will find, at the end of the day, that your world feels a little bit brighter.

Photo credit: Down Syndrome Association of West Michigan

What You Really Told Me When You Said Retard

Language is powerful.  What we say and how we say it has impact. I love someone with a disability.  I know how language can be respectful and uplifting and how it can degrade and demean.  I have done my research and made evidence-based arguments.  I should be able to discuss this calmly with you.  I shouldn’t be afraid to speak up.  I know I’m right.  But I also know this conversation can be a wedge.  It can make people feel embarrassed and uncomfortable – defensive even. I don’t want to make people feel ashamed and I don’t want an apology.  I know you mean well and have probably never thought about it before.  I’m not judging you, but I want you to understand how the words you choose matter to me and to Evelyn and other families like ours.

When you say, “I felt like a retard!” or “That movie was so retarded!” it hurts me.  Do you know what that word means?  That word was a medical diagnosis.  Twenty years ago, Evelyn’s medical file would have read “mentally retarded.”  And that would have been okay.  Because what that word used to mean is “cognitively impaired.”  Evelyn has cognitive impairment – it’s a fact.  But now, doctors don’t use that term anymore.  Because people started saying it like it was a foul word.  Like you just did.  It’s an insult.  It’s derogatory language.  Retard has been reappropriated in the worst kind of way.

Mommy EvieMade a stupid choice?  You’re a retard.  Something is ridiculous?  It’s retarded.  The insult is being like my daughter.  Think for a minute what that feels like to me.  When you say it, I never see it coming.  It’s like an unexpected slap in the face.  I feel my cheeks get hot.  I want the ground to open up and swallow me, because you think that being like my daughter is terrible.  You said it to demean someone or something.  I think about what it will feel like to Evelyn when she is old enough to understand that you choose to express your contempt and disrespect for someone or something by comparing it to her and my heart breaks for her.  I want to explain this to you, but I don’t know how.

If I do work up the nerve to say this to you, you might get defensive.  You might justify it by saying, you would never call someone with a disability retarded – you didn’t mean it that way.  But that is what that word means.  I mean, just because you say “duck” doesn’t mean duck anymore, that doesn’t change the fact that it does. It doesn’t stop you from thinking of a duck when somebody says it. Try saying her name.  Try putting Evelyn’s name in place of the word retard.  Say, “That’s so Evelyn!” when someone really screws up.   Do you get it now?

If you’re still not sure, you can visit r-word.org and find lots of personal stories about how the r-word affects people. After that, if you still don’t understand, it doesn’t really matter.  Because if you believe in respecting people and their feelings, it should be enough for you to know that it hurts, even if you don’t get why.  It should be enough to choose a different word.  It should be enough to make you buy a thesaurus. Just stop saying it!  I never want my daughter to hear it.

What You Aren’t Quite Ready To Hear

That’s me, practically hurdling the toilet paper display to tell you your baby is beautiful.  I see you in the grocery store.  I peered into the carseat, and I saw beautiful almond shaped eyes, a little flat nose, tiny ears.

It’s taking everything I have not to hug you.  I want to tell you that I know.  I want to tell you I am so happy for you, but you won’t understand yet.  You’ve just begun your journey.

I don’t tell you it will be difficult and no big deal at the same time.  That soon, you will sometimes forget the Down syndrome.  It will become an afterthought.  One day you will realize that you went the whole day without thinking about it, and that will happen on more days then not.

I don’t tell you that you will be so thankful.  That he will make you a better parent.  A kinder person.  I clench my teeth so I don’t shout that your world is expanding – that he will teach you to see people in an entirely different way.

I want to say, you are as strong as you need to be.  That whatever comes your way, you can handle it.  I want to tell you that you will learn as you go, that it will be alright –  better than alright!

I want you to know all of this.  Probably, you aren’t ready to hear it now.  It’s too much for someone who might still be grieving.  You wouldn’t believe me.

So, I tell you your baby is beautiful, and I mean it.  He is.  I hope you can tell I mean it, because in this very grocery store, over by the deli counter, a mother told me my baby was beautiful – a gift.   I could see she meant it.  Now I know all the things she didn’t say.  I remember her sincere joy at seeing my little girl, and now I understand she had her own different but beautiful baby at home.

Fortunately, My Baby Was Born With Down Syndrome

A friend shared “Why I Terminated My Pregnancy After Learning My Baby Had Down Syndrome” by Sophie Horan on Facebook today.  I can’t even begin to describe to you the tragedy that is this article.  I am angry.  The misleading and false information Ms. Horan presents in her article disgusts me.  It’s irresponsible and reckless.  But getting angry doesn’t make a difference does it?  So, instead I ask that you take a few minutes to read on and share this so that we may undo the damage done and fight the spread of this horrible misinformation.

I am an educated, informed parent of a child with Down syndrome.  Through my work, I have had the honor of actually getting to know many people with Down syndrome and the pleasure of meeting so many more.  I’m not claiming this makes me a Skotko-level expert, but I would say I know much more about Down syndrome than the average person, and certainly a lot more than Ms. Horan.  I’d like to correct the half-truths and outright fallacies she presents:

“After all, we were both healthy: vegan, fit; I meditated semi-regularly.”

There is absolutely no proven link between Down syndrome and anything parents do before or during a pregnancy or environment factors.  Feel free to check herehere and here if you don’t believe me.  And if you see anywhere in there that my lack of “semi-regular meditation” and joyful consumption of things with faces caused Evelyn’s Down syndrome, I will lick the bottom of my shoe.

“On our way home, we stopped at a sidewalk cafe. There I noticed an older couple with their son who appeared to have Down Syndrome. They were trying to prevent him from running out into the street so they could hand-feed him a slice of pizza and wipe his face with a napkin. Though he behaved like a rambunctious toddler, I wondered if he were a teenager or older (it’s often difficult to determine the age of someone with Down’s). I looked at my husband. He had noticed them too.”

“Plus, there was no predicting the severity of the disorder — some children with Down Syndrome are able to feed themselves and attend school; others require more urgent and consistent care.

Alright, I have a problem with someone assuming that one, short, very limited exposure to a single interaction between an elderly couple and their adult son with Down syndrome is indicative of an entire population.  It seems rather ignorant and small minded to assume this solitary person in this single moment represents the hundreds of thousands of people with Down syndrome living in the United States.  I mean, if I saw a bear ride a unicycle, would it be rational to assume that all, or even most, bears ride unicycles?

While one cannot predict the level of impairment, most people with Down syndrome fall into the moderate range of intellectual disability.  Yes, some people do need to be hand fed and need help not running into the street, but that is not the case for MOST people with Down syndrome.  I know many people with Down syndrome at varying life stages and their level of abilities vary.  They all have strengths and weaknesses.  For example, Evelyn is five years old and feeds herself.  I have seen infants with Down syndrome who hit developmental milestones right on schedule.  I have been lucky enough to know a man named Adam who lives independently.  A talented artist named Bradley.  Our office Intern, Allie, has Down syndrome. I know a 9 year old, Petra, who is an excellent reader, actress and comedian.  This guy drives.  Christian Royal makes beautiful pottery.  Yes, I also know people who require more care in some areas of their lives, but the level of care assumed by this one small pizza-feeding exposure is not typical.  Just because one man could not (or would not), that doesn’t mean it is the norm.

We now know that people with Down syndrome benefit greatly from early intervention services and continued support. It’s not a fact, but it is probable that if this couple was elderly, they raised their child during a time that he was not afforded these advantages.  When they raised their son they probably received little or no support.  Unless they were wealthy, he would not have received physical therapy, occupational therapy, and speech therapy.  He may have been barred from attending a public school.  Today, there are federal laws that protect the educational rights of people with disabilities. Now that we know how to best support people with Down syndrome, the majority go to school, hold jobs, and lead fulfilling lives.  It is even becoming more common for people with Down syndrome to go to college and live independently.

“Knowing that my husband and I wouldn’t live long enough to provide the necessary long-term care for our child was stressful, to say the least. I did not want him or her to ever feel lonely, lack independence, or be confined to a nursing home when we passed on.

“‘Do you remember the people who live in Nana’s nursing home — the ones who aren’t elderly?’ I tried explaining to my husband. Mostly they just sat in their wheel chairs, staring into space. ‘No one comes to visit them,’ Nana had said, adding that most had older parents who’d already passed on.”

Where to begin?  First of all, as a parent of a child with special needs, it is my responsibility to make sure she will receive the support she needs after we are gone.  If I don’t want her to end up in a crappy nursing home, I better do the work to make it happen.  Yes, that requires more work on my part, but she is my child and I love her so I can do some work to ensure her happiness.  Figure it out.  Do better.  That’s parenting.  For any child, you work hard so they have a good life.  This is just another challenge, and as parents (or siblings) it is our job to rise to the occasion, not just throw up our hands.  That is what family does.

Secondly, this idea that every person who was not elderly in the “nursing home” had Down syndrome is preposterous.  I would bet my house that was not the case.  People end up in assisted living facilities for a variety of issues and various life stages.

And finally, if the people in this facility weren’t visited by their families and friends, It’s probably because they were jerks that nobody liked, their families were jerks that nobody liked, or everyone else they knew was already dead – not because they, allegedly, had Down syndrome.

“I was ready to make the hardest decision of my life — terminate the pregnancy. And I would make it as a mother who wanted to do the best for her child.”

“My child deserved better than a life of struggle and frustration due to a condition that he or she would never be able to change.”

I agree, deciding weather or not to terminate a pregnancy is the hardest decision a woman ever has to make, and I believe it’s her choice to make.  I suffered through the same decision.  I was terrified when I found out my daughter would have Down syndrome.  My knee jerk reaction was to get an abortion, make it go away.  Luckily my doctors provided me with accurate information and connected me to resources in my community.  Obviously, Ms. Horan was not afforded the same luxury.  I’m sorry for that.  Her doctors didn’t do their job.  The course of my life and hers was determined by a trusted doctor’s inclination to educate him/herself and others about Down syndrome, just in different ways.

But the assertion that terminating this pregnancy was best for that unborn child is categorically untrue. Yes, raising a child with Down syndrome is inconvenient and sometimes its downright difficult – for me.  But people with Down syndrome themselves?  Well, 99% of people with Down syndrome are happy with their lives and 97% like who they are.  That’s much higher than the overall population.  So, I don’t buy it.  I hope that at the time, Ms. Horan truly believed that she was making the best decision for her baby, and not just making the best decision for herself.

Either way she was wrong.  Because in addition to people with Down syndrome enjoying life, 99% of parents said they truly love their child with Down syndrome and 88% of siblings said they are better people because of their sibling with Down syndrome.  Me personally?  I’m thankful everyday that I decided to continue my pregnancy.  I’m grateful for the opportunity to raise a child with Down syndrome.  My life is better because of her.

Ds-connect is here!

The National Institutes of Health’s voluntary Down syndrome registry is up and running!  Ds-connect allows persons with Down syndrome and their parents and caregivers to directly impact the speed and cost of Down syndrome research.  The registry provides de-identified aggregate information to participants and researchers.  Best of all, registrants can choose to be contacted to participate in Ds research studies.  With recent medical developments, I believe there is a true urgency to discover as much as we can about Down syndrome, before the population dwindles to a level where we will no longer garner even the small amount of national funding we receive now.  I’m giddily imagining what can be accomplished when the Down syndrome community is given the power and ability to fuel this research.  Please, check it out, sign up, and tell all your friends with Down syndrome and the people who love them!

Smarty Pants

Today, when I pick Evelyn up from her summer program, I have the pleasure of reading the following note from her teacher:

“Evelyn had a good day…She counted her friends and teachers.  She said there were 10 people – which was correct.  We read the book ‘Old MacDonald Had A Farm’ and she told us the sounds of all the animals.”

When we recieved Evelyn’s diagnosis, one of my greatest concerns was that she wouldn’t be like our family.  She wouldn’t look like us.  She wouldn’t fit in with us.  She wouldn’t be like us.  I was especially concerned that she wouldn’t be smart.  I come from an intelligent family.  My identity was firmly rooted in my intellect.  I found a learned mind to be the most admirable quality one could possess.   I was constantly praising Brady for his intelligence.  I often worried how I would relate to this child who can’t learn?  How would I praise her?  I wouldn’t be able to say, “You are so smart! I’m proud of you!”

Therefore, I had to take a hard look at myself.  I’d always looked down on other’s who placed the highest value in beauty or athleticism, but was my point of view any less small minded?  I spent a lot of time before Evelyn was born rewriting my definition of human value.  I was surprised to find so many other admirable attributes.  I began noticing and appreciating patience, humor, kindness, and thoughtfulness in others as much, and sometimes even more, than intellegence.  I learned a valuable lesson:  There is no singular trait or attribute that is more valuable than the others.  We all have our strengths and our weaknesses, and the value is in what we do with them.  I am thankful for this change in perspective.  It adds dimension to my relationships and my life.  I’m glad I was pushed to take this journey by her diagnosis.  I hope anyone who is living in a small world, like I was, is given the opportunity to expand their horizons.

Yes, my concern for Evelyn’s lack of intelligence changed me and I am grateful I took that journey, but I was wrong – Evelyn is smart.  People with Down syndrome are smart.  People with Down syndrome can learn.  Sometimes in a different way, or at a different pace, but that can be said of many people.  While I want to encourage others to find value in more than intelligence,  I also want to assure you there is no need to count out intellect when it comes to someone with Down syndrome.  Evelyn can sign at least fifty signs.  She can read the alphabet, count to ten, and identify her colors and shapes.  She sight reads dozens of words.  That’s pretty good for even a typical three year old.  Granted, it didn’t come as easily as with her brother, and her sister is rapidly gaining on her.  That is why I am especially proud of how determined she is.  She never quits.  She just keeps trying.  When I feel frustrated or overwhelmed, I think of Evelyn, and I carry on.  She is inspiring.

So today, I read the note from her teacher and I say without hesitation, “You are so smart!  I’m so proud of you!” and I mean it.

Down Syndrome and Birthdays

Looking at the searches that have lead people to this blog is an adventure.  Some are hits – each time I see a search about prenatal diagnosis I give myself a mental high five.  Some are misses – “natural garden images” for my Welcome to Holland analysis.  Some surprise me – I’ve had multiple views of my post from Adelle’s birthday for searches relating to celebrating birthdays of people with Down syndrome.  That post doesn’t address the topic at all and, honestly, I never would have thought about addressing this topic because sometimes I forget about Before Meredith.

Before Meredith was nice.   She tried to do the right thing.  She didn’t want to offend anyone or hurt any feelings – to the extent that she avoided situations or people that might cause either of those things to happen.

I can imagine her flipping through the mail while walking up the driveway from the mailbox, smiling a little at a small colorful envelope addressed to Brady, obviously carrying an invitation from a friend.  I can imagine her reading the glossy photo invite over his shoulder, happy that he has been included in this celebration by a little classmate.  The who, when, and where listed next to a smiling picture of a little boy or girl with Down syndrome in the shape of a balloon or a birthday cake, colorful cartoon confetti splashed all over the background.  That picture would morph Before Meredith’s smile into an anxious frown.  Later, she would carefully Google “Down syndrome birthday”, for the perfect “Down syndrome gift” so as not to offend the poor “Down syndrome child” or “Down syndrome parents.” Then, on the day of the party, she would drop her son off with his brightly decorated gift, to play games and eat cake, and she would cross her fingers that the gift was correct and be proud that her son had a friend with a disability – big parenting pat on the back. Yeah!

It would be easy for the person I am now to get angry at Before Meredith.  There is so much injustice in the world when it comes to people with disabilities.  It can be overwhelmingly heart breaking.  Before Meredith is a convenient (although not fair) scapegoat.  Before Meredith doesn’t know many people with disabilities.  But I know what is in her heart, because I was her.  Her heart is mine, with less experience.  Her mind is open.  She is looking for the right answer.  So here it is:

A child with Down syndrome is a child first.  They would probably appreciate whatever fad is popular with children in their class.  Feel free to ask what they are interested in when you call in your RSVP, or let your child choose the gift.  A birthday with Down syndrome is the same as a birthday without Down syndrome.  Just like any other child, a child with Down syndrome will care more about having friends at their party than the gift brought with the friend.

The same goes for any other situation for people with Down syndrome.  They are people first.  Down syndrome is something they have, not who they are.  Down syndrome does not make someone all that different from anyone else.  To Before Meredith I say: Don’t be afraid of saying or doing the wrong thing.  Don’t worry about what you don’t understand.  Put yourself out there.  Ask Now Meredith.  She would be happy to answer your questions and you will be better because of what you learn.

photo credit: chambanamoms.com

Liebster Nominees – Surprise! I’m Not Dead!

When I was nominated for a Liebster Award by Bright Blue Line, I had this grand idea to knock out all of my Liebster posts by posting once a day.  It’s safe to say, I bit off more than I could chew.  I mean, I wore a swimsuit instead of underwear yesterday.  Frankly speaking, I’m a little underwater here (no pun intended).  It has become clear to me that when I thought I was prepared for a third child, I was completely mistaken.   I have 91 new Facebook notifications and its not because I am popular.  My house smells weird and I can’t figure out if it’s the fridge, Mount St. Laundry, the diaper pail, or me (I’m not showering as much as I’d like).  I’ve seen a lot of women pull off three kids flawlessly, and good for them.  But for all you moms out there who have three or two or even one who’s pushing you to your limit, I’m right there with you.  I’m in survival mode here.  That’s my excuse for taking so long to make my nominations: I have three kids.  I have finally managed to find a few minutes (that’s right – I’m posting from the bathroom because the door has a lock) to share eleven blogs I love to read that I think you should be reading, too:

Autobiographical Reflections

Contrary Mom

The Cooper Chronicles

An Exacting Life

The Maiden Metallurgist

“Normal” is the New Boring

Punk Rock Mamma’s Blog

Simple.  I Just Do.

A Typical Son


We Will Begin Again

To accept the Liebster Award I have so graciously bestowed upon you, follow these simple rules.  You can do it all in one post, several posts, or not at all.  It’s up to you.

liebster-award-ribbon1.Thank the Liebster-winning Blogger who nominated you and link back to their blog.  Yay, that’s me!  Be sure to mention me in the dedication page of any future publications, or I can just write the forward for your novel.

2. Post 11 interesting facts about yourself.

3. Answer the 11 questions your nominator asked.  Check out my thought-provoking questions below!

4. Create 11 questions for your nominees.  

5. Nominate 11 blogs of 200 followers or less which you feel deserve to be noticed and leave a comment on their blog letting them know they have been chosen.  I have no idea how to tell how many followers a blog has, so if you have more than 200 followers, don’t be offended. Additionally, I left out Kimche Latkes, Dissocial Mom, and Little Bird’s Dad because you have all been nominated recently.

6.  Display the Liebster Award logo.

Should you choose to accept, here are my eleven questions for you:

  1. Why do you blog?
  2. Aside from me and my fabulous blog, what are you passionate about?
  3. Myself excluded, who do you admire?
  4. What would you like written on your tombstone?
  5. If someone is reading your blog for the first time because a wildly talented, somewhat disheveled blogger who is wearing actual underwear today nominated you for a Liebster Award, which post do you want to make sure they read?
  6. Hypothetically speaking, If my kids have allergies but they are not really affecting them right now, is it still okay to give them Benedryl so I can take a nap?
  7. What is your favorite place and why?
  8. What is your favorite book?
  9. You know that song that get’s stuck in your head even though you hate it – which song is that? Is it stuck in your head now? Hee hee hee.
  10. What is the meaning of life?
  11. Where did I put my car keys?

Liebster Award: All The Rest

liebster2The last of the questions posted posed by Bright Blue Line follow.  I couldn’t really make a post out of each, so here they are.

“What makes you unique?”

Well, it’s probable that I am not unique.  Most likely there has existed or does exist or will exist someone like me.

“Describe your most favorite night out?”

No kids, tasty beer, my favorite jeans fit – YEAH! Dan can come if he wants to.

“If you were a super hero, what would your powers be and how would you use them?”

My selfish answer is that I would love to be able to run forever like Dean Karnazes.  I would use this power to, well,  run forever.  The human body is amazing.  The way I feel when I am running is terrible and fantastic all at once. I crazy want this power.  If it would give me that power, I would drink his blood or something equally evil.  I would even sit through all The Twilight movies.

My selfless answer is that I want to shoot empathy laser beams from my eyes into people’s hearts.  I would use it to make people understand one another.  I really believe this would solve a lot of problems.

Now I am going to have a beer and build a trophy case for my Liebster Award.  Stay tuned for my Nominees!

Photo credit: tshirtsandtwine.com

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