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.

Advertisements

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.

Liebster Award: Using My Powers For Good Instead of Evil

The first Liebster-qualifying question posed by Bright Blue Line, “What Inspired You To Start Blogging?” is addressed briefly on my “Get Down With Me” page. I’ll try to expand without boring you.

I’d like to preface this by saying that I am pro-choice. Whatever your position, I respect your right to your opinion and I expect the same from you. This post is NOT an invitation to debate that issue. I just don’t want what I say next to be misinterpreted as an argument for outlawing abortion. It is simply an argument for access to information.

Currently, 97% of pregnancies testing positive for Down syndrome are terminated. Ninety-seven percent. There are hundreds of thousands of people with Down syndrome living in the U.S., but most of those people are not part of that other three percent. Most people with Down syndrome were diagnosed after birth. All that is changing. There are now several tests on the market that can screen for Down syndrome earlier, more accurately, and less invasively than ever before. Easier, more efficient screening means more prenatal diagnoses – and more terminations.  This information was what pushed me out of my comfort zone and into the blogsphere.

I don’t have a problem with prenatal testing; I had prenatal testing. However, have you ever heard the phrase “knowing just enough to be dangerous?” It means a person has knowledge, but just enough knowledge to provide a false confidence, and not nearly enough to know all the possible consequences of their actions.  When medical professionals provide expectant parents with a diagnosis but no additional information about Down syndrome, they are really giving them just one piece of the information they need to make an educated decision. Prior to testing, my husband and I had discussed the possible outcomes and decided that we would not terminate the pregnancy if the baby had Down syndrome.  Yet, when I heard the diagnosis, my first instinct was to terminate because I didn’t know anything about Down syndrome. Like most people, I was afraid of the unknown.

I took to the internet, intent on informing myself before making such an important decision. I found a lot of statistics.  I found reports of all the medical problems that could affect a person with Down syndrome. I found a lot of outdated information. I found a lot of postings from other mothers and fathers looking for answers, just like me.  I did not find what I was looking for – What is it like to live with Down syndrome?  What does it take to raise a child with Down syndrome? Ultimately, thousands of families in the U.S. alone will be put in that same position each year.  I hope when they Google “Down syndrome diagnosis” my blog will pop up, along with the others that have started showing up on the web in the last few years. I hope that I am helping these families make an informed choice. I believe that some of them will choose to continue their pregnancies.  I am glad I did, and I think other families will feel the same.

Basically, I decided to use my powers for good instead of evil.

For now.

Photo credits: josavill.com, theidsc.org

So, You Just Found Out Your Baby Has An Extra Chromosome…

I’m sure you are shocked, scared, overwhelmed and grieving – I know I was.  I was 11 weeks pregnant the first time I heard that my baby might have Down syndrome.  It was confirmed at 18 weeks.  I considered terminating my pregnancy, but I was lucky enough to have well-informed medical professionals and a local Down syndrome association who helped me to learn about the realities of life with Down syndrome.  I know though, that many people are provided little to no information, or incorrect information.  There are several great websites that can help you find out more, including ndss.org and nads.org.   They will help you find support and can give you lots of factual information.  But you can start here with a few of the most important things to know when receiving a Down syndrome diagnosis.

IMG_1159First, please understand that this does not define you, your child, or your family. My family is normal.  We have exciting Christmas mornings and nervous first days of school.  My kids play and laugh and fight together.  We go to parent-teacher conferences and way too many after school activities.   We have barbecues and birthday parties.  We have tons of friends.  It may seem impossible to you now, but Down syndrome is merely a footnote in your family’s story.

This next part may be hard to hear but… You are not special.  Well, maybe you are special – I don’t know you.  But that’s not why your child has Down syndrome.  I am a regular person.  I yell at my kids, I swear too much, and at times I feel overwhelmed by parenthood.  I’m not a saint.  You were not given this child because, “God knew you could handle it.”  Anyone is capable of raising a child with Down syndrome.  If I can do it, you can.  Parenting works like this: Take things one step at a time; what you don’t know, you learn; love your child.  None of that changed just because my child has Down syndrome.  She makes me laugh, she drives me crazy, sometimes I am AWESOME… and sometimes I screw up – just like with my other kids.

However, you will become a better you.  Becoming a parent changes you, and becoming a parent of a child with a disability is even more affecting.  I had a much narrower view of the world before my daughter was born. I now practice empathy instead of sympathy, and I judge people by who they are, not what they can do. I’ve opened my life to include people I never noticed before.  I stopped letting fear of saying the wrong thing prevent me from getting to know all different kinds of people.  I don’t value my journey by where it ends or how quickly I arrive, but by what happens along the way.  My world is bigger, my life is fuller, my heart is freer, and I am happier because of this change in perspective.

485207_10200638402467277_2047462886_nFinally, and most importantly, you are not alone!  There are hundreds of thousands of families in the U.S. who have taken this journey – millions worldwide.   You really need to meet some of these people!  We have been where you are and we are living proof that life with Down syndrome is not much different than life without it.  You can contact your local Down syndrome association or join an online group and talk with someone who understands.  We are here to support you.

I’m not saying life with Down syndrome is all rainbows and unicorns – but life isn’t all rainbows and unicorns.  As someone who’s been where you are, I just want you to understand this:   My life is good. 

 

If you already love someone with Down syndrome, please share anything else you wish you would have known when you first met them.