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.

My Good Fortune

We have, thankfully and miraculously, survived Evelyn’s two week spring break.  It has been a long two weeks, plagued by cold, rainy weather, snotty noses, vomiting and teething.  After a few days away from the structure and stimulation of school, Evelyn started to seriously regress and fall back on a lot of old, negative behaviors.   I am proud to say I have not dropped my toddler off at a fire station, nor have I been committed to a psych ward.  However, I just might kiss the bus on Monday when it pulls up to the driveway.

At the end of this eternal spring “vacation”, I watch Adelle carefully hand Evelyn a pink plastic tea cup. Evelyn tosses it towards the ceiling, gleefully shouting, “Up high!”  When the cup clanks back down to the floor, booth girls laugh hysterically.  The baby delicately retrieves a yellow plastic banana with two fingers and gives it to Evelyn, who gives it the same treatment as the tea cup.  I love hearing them laugh; it makes my heart soar. As a parent, there is no better sound than that of your child laughing joyfully – with one exception…

I still remember the first time with Brady, back when it was just me and my boy trying to fill this house with not much furniture, but a lot of love – making a home. I had just worked my fifth 12 hour shift of the week and I was mentally and physically drained.  I made it home just in time to read him a story and tuck him into bed.  I was already thinking about the ice cold beer waiting in my fridge as I kissed him goodnight and told him, “I love you.”  As I stood to leave, he rolled over, snuggled down in the covers and simply said, “I love you, too, Mommy.”  I was surprised by the tidal wave of emotion that struck me.  When I became a parent and held Brady for the very first time, I felt love so powerful, so strong, that I thought it might break me.  I spent the first weeks of his life consumed by the overwhelming love I had for him.  When he verbalized his affection for me in the soft glow of his nightlight, the experience was equally moving.  I was so affected by it that, even years later, I can recall every minute detail of that moment.

It occurs to me that Evelyn has never said, “I love you.”  Evelyn probably can’t say, “I love you.”  She started speaking last summer and, while she can say a lot of different words, she is just beginning to string together two word phrases.  I am somewhat disheartened to think I may have to wait a long time to hear those words so dear to a parent’s heart.

I do know Evelyn loves me.  Every time she wraps her little arms tight around my neck and buries her face in my shoulder or climbs in my lap with a book, she is declaring her devotion.  Slobbery kisses and tiny hands patting me on the back are comforts given with true affection.  With each treasured Goldfish cracker shoved towards my mouth, scribbled drawing thrust under my nose, and funny face made for my eyes only, she is clearly stating, “I love you!”

Possibly, if she already said those three little words, I would neglect to notice all the ways she shows me she loves me every day. I know when she does say it, I will appreciate it because she worked hard to form those words with her little mouth, but I don’t really need her to speak it for me to know it. I will probably remember every detail of the moment Evelyn vocalizes, “I love you,”  but I will also remember these moments.  As I reflect on them, I feel the same swell of emotion I felt years ago, tucking a small, messy-haired boy into bed.

I am pulled away from this thought by Evelyn.  She has noticed she no longer holds my attention, and she thrusts one palm into the air.  “Five!” she demands.  I smack her raised hand with mine.  A small smile creeps across her face as she lowers her hand and her voice and says, “Down loooow!”  When I slap her palm again, she laughs loudly and reaches for a small purple plate in Adelle’s outstretched hand.  Confident I am watching, she tosses it in the air and screams, “Up high!”  Just like that, I stop feeling sorry for myself.  Instead, I feel fortunate.

Be An Ambassador For Social Evolution: All The Cool Kids Are Doing It

Every parent has that fiercely protective instinct. Mine makes me wrathfully stink-eye a small child at the mall play area because they pushed my pride and joy off the slide. It made me seriously consider locking my offspring in the house to guarantee safety from serial killers, pedophiles and bullies.  Even before Evelyn was born, this instinct kicked into overdrive. I was angry! I was angry at the children who would exclude my little peanut on the playground! I was furious with the elderly people who would assume she should be institutionalized! I was peeved with the everyday people who would experience discomfort at her proximity, or openly stare like she was some sort of circus side show attraction!  I had all sorts of preconceived notions and I was violently vindictive towards these hypothetical attackers who would dare hurt my child. I spent countless hours building an arsenal of angry rhetoric and biting replies to barrage these attackers before they even entered our lives.

After her arrival into this world, though, I experienced much less of this than I expected. The attacks I predicted, for the most part,  never came.  It took a while, but I began to relax. When I did, I realized what a toll all of that anger was taking on me. Constantly caught in a state of agitated readiness, waiting for attack – It was exhausting. I let my guard down and I began to enjoy my life again.

This isn’t to say that those things haven’t or won’t happen. They do, on occasion, and I’ve really had to look within myself for guidance in these situations. I have to remember before I had the pleasure of knowing Evelyn.

I always considered myself to be open minded. In hindsight, I see that was not the case. I couldn’t fully understand and accept what I had never experienced. Evelyn is capable, perceptive and loving – she is like any other child, in most ways. I now get that people with disabilities are just people. I don’t need to put them up on a pedestal and I certainly don’t need to pity them.  It’s hard for me to admit when I am wrong, but I was wrong.  I am ashamed of my previous thinking, and grateful that I have been shown the truth.

Unfortunately, I only gained this understanding from knowing someone with a disability. Our society doesn’t emphasize this side of disability – that people with disabilities are only people – no more, no less, and not much different from people without disabilities. I now realize that my anger was futile, but what else can I do?  As a society, we fall short.  How can one person change a whole society?

Honestly, most people mean well. I’m not talking about the Ann Coulters or the Rush Limaughs of the world (Relax – I don’t mean conservatives, I mean people who refuse to admit it’s wrong to use the slur “retard”), or the abusive educators or Eugenicists. I don’t refer to those who unapologetically choose hate. I am referring to the ignorant.

You see, in our society, ignorance has incorrectly taken on a negative connotation. To be ignorant is to simply not know. There is nothing wrong with not knowing, unless one is given the opportunity to learn and refuses. I don’t believe deliberate ignorance is the norm. On the contrary, most people are unintentionally ignorant – like me. There is so much I, myself, still have to learn; I certainly don’t want that held against me. I prefer for people to share their knowledge with me. I have an unquenchable thirst for understanding and I desire to grow as a person. I believe most people feel the same.

Then, how do I intend to alleviate ignorance? Simply by being not only an advocate for my daughter – but an ambassador, as well. To be both requires patience, thoughtfulness, and practice. I must calm that primordial, protective response and think before I speak. I am not, by nature, a “people person.” I am an introvert, but every day Evelyn and our family get out there, we provide an opportunity for society to see what life with Down syndrome is REALLY like. Every friend we make, every coworker, every person we come across is an opportunity to enact change.  Each Cub Scout meeting, trip to the grocery store, and playdate is a chance for people to get to know us and our family – to put a human face on disability. I don’t approach the afore mentioned situations as conflicts; I address them as opportunities. This change in prospective provides the  possibility to change the perception of my daughter which, in turn, improves her life. In order to accomplish that primeval goal of protecting her, I must quiet the instinctual response it inspires in me. If I am angry, aggressive, or admonishing, it will only serve to further alienate my audience by enforcing the perception that we are unalike. If I attack, they will defend.  Instead of encouraging an adversary, I prefer to establish an ally. If I am patient, gracious, and friendly, common ground can be found.

Undoubtedly, there are some people who take comfort in their ignorance. It provides a false sense of superiority and security. These people won’t be swayed by a smile and a few carefully chosen words, but an angry barrage of how-dare-you’s is equally ineffective.  I believe these people are the minority and  most people will respond in kind if they are approached with an open heart and mind.

Therefore, I have decided to let go of my anger and treat people how I would like to be treated – with respect, kindness, and empathy. It’s harder than stomping around in jackboots, threatening wrathful vengeance (and maybe a little less fun), but it just might be more effective. Perhaps the way to encourage respect, kindness and inclusion for my child is to kindly and respectfully include others in my life. Instead of waging a war for social revolution, I’m engaging others in the conversation that is social evolution.  I’ll let you know how it goes.

You can check out John Franklin Stephens, an amazing ambassador for social evolution, here. His ability to take the high road and speak thoughtfully and respectfully to someone who didn’t earn it is inspiring.

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?

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.