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.

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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

VIOLETWISP

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: This Is Why I Am Awesome.

When nominating Looking Up With Down Syndrome for a Liebster Award, Bright Blue Line asked: “Are you more awesome now, or 10 years ago? Why?”

I was born incredibly awesome, which makes it hard to believe that I am constantly gaining awesomeness! I am much better now than ten years ago for about a million reasons. I don’t have time to list all the amazing things about the new and improved me, so I’ll just hit the highlights.

I have an awesome husband. I don’t write about Dan much, because I know he probably doesn’t want his personal business broadcasts all over the internet on a soon to be world famous blog, but he does contribute to my awesomeness. He encourages and supports me in all aspects of my life. He is a thoughtful, intelligent, kind person – a fantastic friend and great father. He reminds me that I am awesome all the time. Having a real partner – someone I can rely on – allows me to explore my awesomeness fully.

I made three awesome people. Ten years ago, Brady was just starting to make me outgrow my pants. Today he is creative, thoughtful, and funny. His intelligence is unbelievable! He is so smart, sometimes I have to remind myself he is just a kid. Evelyn is expressive and affectionate. When she dances it makes my heart soar. Her emotional intelligence is off the charts, and she has a talent for copying other people and exaggeratedly acting out emotions. She may have a career in the dramatic arts. Adelle is at that age where she is just beginning to show her personality. She is determined and observant. She loves to dance like her sister. Not only did I make these awesome people, but becoming a mother is what motivated me to grow as a person and change my life. I wanted my kids to have an awesome role model, so they would have awesome expectations for life.

I have awesome friends. I have so many cool people in my life: friends from childhood, friends from high school, family friends, friends made through other friends, friends through marriage, friends I made through my Down syndrome association. All of these people from different walks of life provide different perspectives. In the last ten years, I’ve learned their camaraderie helps expand my world and shape my awesomeness. Plus, I look pretty awesome, just by association.

And the most awesome thing about awesome me that lead to all this other awesomeness?

I love myself. I really do. Ten years ago, I loathed myself. I was insecure. I didn’t know who I was. I didn’t know where I belonged. I was constantly searching for approval from others. I love myself today because I worked HARD to change the way I thought about myself, the way I treated myself, and the way I expected others to treat me. It was a long, painful journey, but it was completely worth it. It is why I have so many awesome people in my life. It’s why I take chances. It’s why I believe in myself. It’s the most awesome thing about me.

Photo Credit: shirtsayings.net

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

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.