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20 years ago, the Ethan Saylors of this country were gay. 50 years ago, they were African American. Is the marginalization of those with intellectual disability our legacy? I hope not.

Little Bird's Dad

LB20130329(Daily Show)The Attig Law Firm, based in Dallas, Texas, is offering $1,000 to the International Down Syndrome Coalition (IDSC) if you can help get Ethan’s mom on the Daily Show to talk about this incident.

The offer was made on the Attig Law Firm’s facebook page.  Take these 4 steps:

1) Go to the Attig Law Firm’s facebook page.  Share the post on your home page on Facebook.  Tweet it. Pin it on interest.  Get the word out.

2) Contact Jon Stewart, and ask them to host Ethan Saylor’s mom on the Daily Show to discuss this incident. Use the same subject, to bring attention to all the emails:  “Please Have Ethan Saylor’s Mom on the Daily Show”

3) Ask 10 of your friends to spread the word.

4) Repeat Steps 2 and 3.

If Social Media can foment rebellion in Egypt, it can get Ethan’s…

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Three 21st Chromosomes Walk Into a Bar and the Bartender Says, “Why the Cognitive Delay?”

Photo courtesy of Noah’s Dad

The 21st chromosome affects up to 2% of a person’s overall DNA.  That may be small, but it is not known entirely what that 2% affects.  How integral is that extra copy of the 21st chromosome to who my daughter is?  It obviously shapes her beauty.  How does it affect her view of the world, her personality?  Yes, Evelyn is so much more than Down syndrome, but it is certainly a part of her – one that I would not change, because then she wouldn’t be Evelyn.

I did not always feel this way.  When I was pregnant, even through her infancy, I would have jumped at the opportunity to “cure” Evelyn’s Down syndrome.  It certainly would have made her life and our’s easier.

Then, as Evelyn grew into a toddler, her personality emerged and I began to understand her more.  I came to realize Down syndrome is not an affliction to be cured; it is not a disease.  True, some health issues sometimes associated with Down syndrome can be life-threatening, but the syndrome itself is merely a collection of symptoms – most of which have no lethal inclination.   Life without Down syndrome might be easier, but I am certain it would not be better.  On the contrary, I believe Down syndrome has improved my life, as I have written before.  I wouldn’t want to eliminate that extra chromosome because I think it would fundamentally change who she is.

I will, however, do anything I can to improve her life.  Evelyn wears orthotics to help train her muscles to work against her low tone and increase her mobility.  She has ear tubes to improve her hearing, allowing her to use all of her senses to learn.  Evelyn participates in early intervention services that provide physical, speech and occupational therapy. All of this is intended to help Evelyn achieve the fullest life possible –  hopefully one of independence and inclusion with her peers.

I recently read about a study which concluded the third copy of the 21st chromosome limits the amount of a specific protein in the brain. This protein helps neurons to work properly.  With this knowledge, the scientific community is one step closer to thwarting the effects of Down syndrome on the brain’s ability to absorb and store information.  I can’t help but be hopeful that soon there will be a safe, effective therapy to grant Evelyn the ability to learn and retain much more than her current capabilities.  A treatment that would allow her to learn to drive a car, graduate from college, and live independently.  Of course, some people with Down syndrome already do all of these things, but it is not the norm.

I don’t believe this would change who she is, essentially.  Certainly, it would make her life easier.  Better?  Maybe.  I’m open to the possibility – as long as she is still Evelyn.

Happy Birthday and I’m Sorry You Don’t Have Down Syndrome

IMG_0763Today is my Adelle’s first birthday! She is whip smart like her brother, and fiery like her sister.  She loves sneezing and dancing and she thinks that the proper farewell to anyone, anywhere is “Bye-bye, Daddy!”  When she looks at a book or watches a video, she doesn’t sit – she takes a knee.  Delle is a serious observer, just like her father, watching and absorbing everything around her.  She both worships and fears Evelyn, who is her only playmate and her only persecutor.  I am pretty sure she thinks Brady is just some little guy who happens to live in our house.

Last night, after celebrating World Down Syndrome Day with our local Down syndrome association, I came home to bake her birthday cake.  I made her the same cake my grandma made for me every year, at my request – a Jell-o cake.  As I enjoyed the sweet, strawberry scent that filled my happy, little house, I wondered how it will be for her, and her brother, growing up with a sister with Down syndrome.

I don’t mean that in the way you may think.  I don’t worry she will be a burden to her siblings.  I hope all three will consider it a privilege to love and support each other, as my sisters and I do.  No, my concern is that somehow my other children will feel…well…ordinary compared to Evelyn, constantly sitting in the shadow of her Down syndrome.

For instance, each March, we celebrate World Down Syndrome Day, and every October we build a Step Up team that is, essentially, a parade for Evelyn and Down syndrome.  Additionally, we attend fun parties and playgroups all because Evelyn has Down syndrome.   Then, we sit in waiting rooms at doctors’ offices because Evelyn has down syndrome.  If I add up the hours my children spend waiting in doctors’ offices…actually, I don’t want to.

IMG_0024As an adult who has survived adolescence, I know all the pains of growing up that Brady and Adelle will experience will be visited upon Evelyn two fold, if not more.  While they may occasionally be ignored, mocked or underestimated, Evelyn will face those obstacles on more occasions and, most likely, well into adulthood. I also believe they will be better people because they love her.  They will presumably be more patient, empathetic, and considerate than their peers.

However, they are children who can’t and shouldn’t know that yet.  Therefore, I worry they will constantly feel outshined by Down syndrome.  Good or bad, when people meet our family, it is probably what they notice first.  Somewhere in it’s shadow lie my other wonderful children, as unique and exceptional as Evelyn.  Just as I don’t want Evelyn to feel defined by her Down syndrome, I don’t want them to feel excluded by their lack of it.

Today, as I honor my last born by hanging streamers and balloons, lighting a candle, and singing with family and friends, I ponder a question:  In my quest to carve out a space for Evelyn in this world, how can I be certain my Brady Bean and my Delle-Belle know they are just as important?

I Am Three Years Old


My name is Evelyn. I am three years old. I am stubborn, “spirited”, and funny. My idea of a perfect evening is curling up with a good board book, some goldfish crackers and a nice vintage juice. I enjoy the company of stuffed monkeys, the intelligent drama of “Signing Time,” and the musical styling of The Laurie Berkner Band. My hobbies include dancing, playing dress up, coloring on anything but paper, and throwing anything that is not a ball. Just for fun, I talk in a voice that sounds like Linda Blair in the The Exorcist. I excel at annoying my brother, tormenting my sister, and sticking both fingers up my nose at the same time in the car and saying “Mama – Look!” – because I know she is driving and there is nothing she can do about it.

Take a picture of THIS!
Take a picture of THIS!

I am adorably and alarmingly audacious. I stack books on boxes on small chairs on coffee tables and try to convince people it’s a good idea for me to climb up there. I jump into the bathtub like it’s an Olympic swimming pool. I dance in public – I don’t care who is watching! I once rode solo in a shopping cart across the Lowe’s parking lot and I love taking off on my own to explore large, crowded public spaces.

Like most three year olds, I think I am the center of the universe. So many people love me, and I’m pretty sure their role in life is to orbit around me and fulfill my every need and desire. They have been caught in my gravitational pull since the universe was created, and will stay that way as long as I exist. I make the rules in this universe – I think that if I cover my face, you can’t see me because I am a really good hider. And like most three year olds, I like to do things my way. On my first day of school, I refused to stand up and have my picture taken, I don’t like when my foods touch each other, and I am way too cool to hold my mom’s hand.

1st day of school
1st day of school

Also like other three year olds, I am not a “little angel” – I am a unique person with complex thoughts and emotions. Please, don’t take away my individuality by assigning me a personality based on my chromosomal make up. Saying that children with Down syndrome are sweet and loving all the time is equivalent to saying Asians are good at math, Jewish people are great with money, or African-Americans are good at sports. Just because the trait that is assigned is not negative doesn’t mean it is true and it doesn’t mean it is okay to define a person based on just one aspect of who they are. Yes, I am fearlessly friendly and I give the  best hugs – when I feel like it. But I will also unroll the toilet paper or shred an entire box of tissues, given the opportunity. Because that’s who I am – I am three years old!

In honor of World Down Syndrome Day, please watch this video from the International Down Syndrome Coalition to meet a lot of other people and allow them to tell you who they are. They are not three years old (mostly), and they are all different. I know you will watch it – because I make the rules in this universe.

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 and   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.




643969_4661226333432_1690287911_nEvelyn pokes the ground with a stick.  She tries hitting the flowers, the sidewalk, and the grass.  She finds satisfaction in the echoing, metallic clang of the downspout.  She is so small for three years old: just eye-level with my knee.  The wind blows her hair and one light brown pigtail flows in front of her almond-shaped blue eyes, but it doesn’t seem to bother her.  We hear the shifting of the bus before we see it come around the corner.  Evelyn is already excitedly signing with her small fist, Bus!  Bus!  Bus!  She has spent the first three years of her life waiting for her brother’s bus to pick him up and drop him off from school.  Consequently, the word bus was one of the first ASL signs she mastered.  Today is the first time she will ever go on the bus, instead of just watching and waving.

I offer Evelyn my hand and she wraps her tiny, short fingers around one of mine.  We walk slowly down the driveway to the bus.  Her legs, in the pink leggings that she chose for this first day of school, move in a deliberate, stiff-legged march that reminds me of movie clips I’ve seen of Charlie Chaplin.  We can feel the vibration of the engine idling and the doors of the bus screech open as we approach.  She waves to the smiling driver and excitedly repeats, “Hi! Hi! Hi!”  She looks so small next to the giant, marigold bus.  We spent all summer learning to walk up and down three steps so that she would be able to board the bus without the assistance of an expensive, special stroller and the wheelchair lift.  She worked so hard – we worked so hard – and I celebrated when all that work paid off.  However, each of these steep steps comes up to her hip, and on this first day it becomes apparent she will not be able to climb them.   She has never been on a bus before and seems confused when I carry her onto the bus and buckle her into her seemingly over-sized seat.  When I tell her good-bye and that I will see her at school, she begins to cry.

As I start my car and back out of the garage, I think about her beginning.  I think about deciding that we didn’t want Brady to be an only child.  I remember the excitement of finding out we were pregnant and telling our friends and family.  I started looking at baby clothes, car seats, and cribs.  I began pouring over baby name websites.

Then, as I merge onto the expressway behind the bus, I remember the fear when the problems started.  I remember the doctor suggesting we see a specialist for prenatal screening.  I felt a sense of relief walking into the specialists’ office.  Soon I will be assured there is nothing wrong, I thought.  After all, I had been through pregnancy before.  I was younger, less responsible, and less prepared, yet I had still had a perfect, healthy little boy.

First, a genetics counselor took a family history.  She explained the litany of genetic disorders for which the combination of tests would calculate risk factors.  They took a blood sample and escorted me to the ultrasound room.  The technician introduced herself, took measurements and detailed photos and video for the doctor to review.  I was happy to see my baby on the monitor, which was positioned directly above my head.  The beautiful image of this tiny baby, curling its tiny hands in front of its face made me smile.  I was reassured by the steady blinking of its beating heart.  I was certain after seeing my baby that nothing could be wrong.

The technician left to take the information to the doctor.  I waited in the warm room with the lights dimmed.  The only sound was the white noise of the humming computers.  It was peaceful.  A nurse came in, smiling, and told me that the doctor would meet with me for a moment before I left.  I felt trapped in the small, windowless room she led me to.  The white walls were bare and there was nothing to read or look at.  I waited uncomfortably.  The doctor came in.  He wanted to talk to me unofficially about the test.  He’s here to tell me not to worry and that everything looks normal, I convinced myself. 

“I can’t be certain until we have the blood tests back, but I have a good idea of what they might say.  In my experience and with the measurements we’ve taken today, your results will come back high risk for Trisomy 21,” he said calmly.  I was dumbfounded.  Down syndrome?  How could that be?  I had been certain nothing was wrong.  Wouldn’t I know?  Wouldn’t I be able to tell?  I asked how high of a risk he was talking about.  “Probably one in ten for Trisomy 21.”  This was much worse than I had expected.  I felt oddly calm and a bit numb. The doctor explained what would happen next.  As he walked me out to the waiting room he commented on how well I was handling the news.  He said most people were visibly upset when he had to deliver this type of news.  Well, I thought to myself, it’s only a one in ten chance.  There’s still a 90% chance that the baby is fine. The official results could come back with a lower risk ratio, I tried to convince myself.

Alone, I walked out into the parking ramp.  It was hot and muggy.  I have to get back to work, I thought.  I have so much to do.  I looked around, making a mental “To Do” list for the rest of my day.  Now, where had I parked?  Why couldn’t I remember?  What would I do if I couldn’t find my car and I was stuck here?  That’s when I started to panic.

Suddenly, I began to cry sloppy, sniffling sobs that seemed even louder in the echoing concrete ramp.  Even though I was embarrassed that someone might hear or see me, I couldn’t stop.  My heart was racing and my hands were shaking.  I cried because I knew.  I knew this baby wasn’t part of the 90%.  Before it had taken its first breath, even before it had eyelashes or fingernails, I knew this baby had Down syndrome.  I wasn’t even showing yet, and already there was a life sentence for this baby and our family.  I cried because I wasn’t strong, patient, kind or focused enough to take care of this baby.  I cried especially because I wasn’t brave enough.  Why would someone like me be given this baby?  I was just a regular person.  I wasn’t exceptional.  I wasn’t capable of this.  I was scared and disappointed.  I wanted to go back in time and undo everything.  I didn’t want this responsibility.  I didn’t want this baby.

Now, I park my car and walk over to Evelyn’s bus, idling in the circular driveway of the stout, brick school.  I climb the stairs just as I did a few minutes ago.  I can hear Evelyn before I can see her.  She’s not crying anymore.  She is talking in her own little language to herself and looking interestedly out the windows.  When her gaze lands on me, she grins happily, points, and says, “Mama.”  I walk her down the isle and carry her down the stairs.  I set her on the sidewalk and put her backpack on her shoulders.  It’s almost as big as she is.  I tell her it’s time to go into school.  I am both sad and proud as she hesitantly unwraps her fingers from around mine and grasps the hand of one of the smiling staff members who will take her to her classroom.  She waves and, looking anxious, begins her march of tiny steps into the school, her backpack bumping against the back of her knees.  I want to catch up to her, take her hand again and never let it go, but instead I keep my feet planted and watch her walk away.

Of course, she doesn’t look back because she is brave and strong.  She showed me how to be brave when she came into this world six weeks early and so tiny, unable to maintain her own body temperature, and needing to be fed though a tube.  She taught me how to be strong when we waited eight excruciating hours for a surgeon to rebuild her tiny heart, no bigger than a walnut, while a machine worked for her lungs and heart, and then waited three unending days for her to open her eyes again and smile.

Certainly, she will learn a lot in school, at her own pace, because she is focused and patient.  I have learned to stay focused, repeating movements, sounds and words thousands of times to help her learn.  I discovered patience waiting weeks, months and sometimes years, for that focus to pay off when she reached milestones that I had taken for granted with her brother.

Finally, I know Evelyn will enjoy being with the other children because she is friendly and kind and she loves to make others happy.  I now know the value of kindness because I know the sting of an offhanded comment, or an uncomfortable glance, but I also know and the comfort of a stranger taking the time to acknowledge my tiny princess sitting in the shopping cart, messily eating a cookie and shouting a greeting at everyone who passes.  I see how even the smallest act of kindness can have the largest impact.

Eventually, I arrive home, where the amber bus will return Evelyn in three long hours.  I realize that I was right when I stood crying and scared in the parking ramp outside the doctor’s office.  On that day, I wasn’t patient, kind, strong, focused or brave enough for the journey ahead, but I became all of those things because of her.

Don’t Forget to Stop and Smell the Tulips: An Analysis of “Welcome to Holland”

In 1974, Emily Perl Kingsley and her husband welcomed a son, Jason, into the world. Jason had Down syndrome, and the dire predictions of medical professionals in the 1970’s left little hope for the Kingsleys. Thirteen years later, Emily Perl Kingsley wrote her essay, “Welcome to Holland”, about raising a child with a disability. Her experience was vastly different than anticipated, and she wanted to share her feelings as a parent of a child with a disability to correct the misconceptions often associated with having a child with special needs. Through the metaphor of an unexpected change to vacation plans, Emily Perl Kingsley shows that raising a child with a disability is different than rearing a typically developing child, but it is equally rewarding and fulfilling.
Kingsley begins her essay by comparing having a child to planning a vacation to Italy. The eager traveler prepares for the vacation: “You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting” (Kingsley). This is precisely what most expectant parents do: they buy baby books instead of tour books, learn a new language of feeding, diapering and nurturing, and plan for all of the exciting and amazing moments they will experience with their little bundle of joy.
Unfortunately, this plane doesn’t reach its intended destination. Instead of landing in stimulating, sophisticated Italy, the jet touches down in peaceful, picturesque Holland. Dismayed, the vacationer exclaims, “‘I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy’” (Kingsley). The feeling of forfeiture and incredulity is the same felt by mothers and fathers who anticipate a typically developing child, but unexpectedly receive a child for whom they are woefully unprepared. There is disbelief and overwhelming dismay at the prospect of facing a new, uncertain future.

Alone in this new place, the stunned tourist becomes prepared out of necessity. Kingsley writes, “So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.” This, too, is true of the parents of babies born with disabilities. To care for the child they love, they immerse themselves in the study of physical, intellectual, and emotional development. Medical specialists and special educators become part of daily life. These professionals speak in a foreign tongue of acronyms and technical jargon, and sometimes even misinformation. The parent becomes the child’s strongest advocate and must speak fluently and confidently to protect the little one’s best interests. Conversely, there are new friendships with other families, sprouted from the seeds of a unique and shared experience. These relationships provide friends and allies in a time when new parents often feel alienated from their normal circle of friends.

At last, after this whirlwind of education, the transplanted traveler has the opportunity to realize The Netherlands is indeed unlike Italy in many ways, but not necessarily displeasing: “It’s slower-paced than Italy, less flashy than Italy…. you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts” (Kingsley). Parents of youngsters with disabilities watch their progenies develop at a slower pace than others, and often celebrate small endeavors overlooked in the average tot. Yet, each milestone or achievement is still beautiful in an uncommon or unpretentious manner – like the unusual shape of a tulip or the simple, powerful turning of a windmill. Every accomplishment is more appreciated because of the extensive time and painstaking effort applied to complete it, much like an exquisite painting. “The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place,” explains Kingsley, because raising a child with a disability is not awful or unbearable.

Legitimately, Emily Perl Kingsley addresses the loss felt by this unforeseen itinerary change and the cultural differences that will forever separate the Hollanders from the Italians. “But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say ‘Yes, that’s where I was supposed to go. That’s what I had planned’” (Kingsley). This also rings true for parents of children with disabilities. They lost a child – the typical child they imagined and anticipated – and the pain of that loss never dissipates entirely. In spite of never having embraced or encountered that fantasy child, there is still a void in the soul where that child was meant to reside. Sometimes, watching other parents with their typical children exacerbates this sense of loss, because it is a reminder of that dreamed child.

Kingsley completes “Welcome to Holland” by sharing that “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.” For parents of children with special needs, this is sage advice. A child with a disability is still first and foremost a child, offering the same gifts of love and joy as all children. Granted, certain experiences are lost, but others are gained. These new experiences may not be the expected, but they are no better or worse – just as Holland is neither superior nor inferior to Italy – just different from the norm. Kingsley assures that although these gifts are obtained via a different route than expected, they are equally precious. It is important to see beyond the shock of diagnosis to the unique, inspiring blessing that is each child.

Works Cited

Kingsley, Emily Perl. “Welcome to Holland.” Emily Perl Kingsley, 1987. Web. 7 Nov. 2012.