Friday, April 27, 2012

Special Needs Spotlight: Lily



      Suzieque Photography 

I'm Emily Orton.  My husband Erik and I have been raising our five curious creative children in New York City for the past dozen years.  We think it's high time we moved from our two bedroom apartment into a 42' sailboat, but we're still working on that.  We started home schooling in April 2007, the same time we learned our fifth child was on the way.  The magnolias were in bloom.  The following spring we learned our six month old, Lily, had Down syndrome.  She totally rocks that extra chromosome!

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Miggy:  Emily, I'm very excited to be spotlighting you and your beautiful Lily today.   Not only do I know you and your amazing family in person (including a wee baby Lily), but Lily is my first spotlight of a child with Downs Syndrome!  So let's start at the beginning, when did you know Lily did in fact have Down's Syndrome?  How did that news first affect you and how do you feel now?  

Emily:  I suspected Lily might have Down syndrome the day she was born, but I had thought the same thing about her older sister and had been wrong.  My husband, the midwife, the doula, and our pediatrician all agreed that I had nothing to worry about.  When she was eight weeks old, we headed west to shoot a film my husband had written.  Lily had a role and was the calmest on-set baby in history.  Over the next several weeks I continued to worry and wonder, researching "sleepy baby" and "Down syndrome" ad nauseum.  The symptoms seemed almost identical.  By the time we got home, she was four months old and not holding her head up.  My doula and pediatrician suggested I seek solid answers from a geneticist.  There was a long wait for the appointment and then the tests results, but they confirmed the extra chromosome.  By this point, Lily was six months old and it was a tremendous relief to get some direction.  Now, I feel like my husband, the midwife, the doula, and our pediatrician were right; even though Lily has Down syndrome, it's really nothing to worry about.  


Miggy:  While DS is probably one of the most widely recognized disabilities, I imagine that there can still be a lot of misconceptions.  Do you want to take a moment to tell us a little about DS itself, what your notions about DS used to be and what it means to you now?   

Emily:  Prior to having a child with DS, I thought people with DS had slanted eyes and some level of intellectual challenge.  Now, the only thing I know for sure is that a person with DS has 47 chromosomes instead of 46.  There are plenty of other characteristics or symptoms, but they vary so widely that you just can't assume what a person with DS will or will not be able to do.  People with DS read, write, speak clearly, crack jokes, play golf, earn a living, ride a bicycle, ski, surf, earn degrees, make friends, speak multiple languages, play instruments, teach children to read, live alone, advocate for themselves, etc.  Having a child with DS has introduced our family to a whole community of fascinating people.

                                           ILLUMEA Photography

Miggy:  Explain how Lily's special needs affects your day-to-day life?  

Emily:  The initiation months were like getting hazed by life; being dunked breathless in swirling emotions, having our baby poked, prodded, X-rayed, measured, and evaluated, being tethered to 32 therapist visits each month, all topped off with several months of hypsarrhythmia (a.k.a. infantile spasms).  Only 6% of kids with Downs experience seizures.  Of course, we didn't know it was temporary then.  Maybe this developmental pause, and having to administer shots multiple times daily--each one the price of a Caribbean vacation for two--made up for Lily's otherwise robust health. No heart surgery or oxygen machines for us.

Over the next two and a half years, we got into a rhythm with Lily's check-ups and all those therapists.  Because we choose to home school, this was a family affair.  The older children adored Lily and learning to help her, but the flip side of therapy was  sacrifice.  We had to stay close to home and the older kids couldn't even play outside sans adult.  It is New York City after all.  We ran timed drills getting socks, shoes, and stroller ready to take advantage of any post-therapy sunshine or a last minute cancellation.  We also took turns keeping lookout for therapists from the park near our home so we could stay out for as long as possible.

We began to notice that whenever we visited Grandpa and Grandma, Lily would make developmental leaps.  New environments and experiences fueled her curiosity compelling her to try new things.  So we scaled back on therapy from 100% to 75% to 25%, giving us more time for outdoors and field trips.  Her pace of progress seemed to increase.  Once Lily turned three, the magic age when early intervention ends and therapy is turned over to the Department of Education, we decided to drop professional therapy all together.  They were willing to give us the moon…or nothing.  We didn't want the moon; we wanted our daughter, home with us, where she was clearly thriving in the least restrictive mainstream environment of our highly verbal home school.  Nurturing Lily now naturally folds into our learning lifestyle, but it's nice to know the moon is out there if that changes.
  


Miggy:  What are the biggest worries you face for Lily?    

Emily:  I have two long term concerns for Lily.  The first is her health (obesity related issues and Alzheimers disease).  The second, and more critical issue, is that she not be underestimated.  Lily continues to surprise and amaze us with her capacity.  I don't want anybody setting limits on what she can understand, what she can accomplish, or what she has to offer.  


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Emily:  Before her diagnosis the pediatrician didn't find any signs of DS besides of slanted eyes and low muscle tone.  He said, "She has slanted eyes, but so do 5 billion Chinese."  I did not know how to respond to that "Um…she's not Chinese."  

Also we get to make DS jokes like when Lily climbs up into our loft bed most mornings to wake us up.  She pulls on our hands and feet and faces saying, "Mommy, down?  Daddy, down?  Go down?  Morning!  Mommy down!"  And I say, "What?  Do you have down syndrome or something?"  

One of my favorite moments was when a young neighbor boy was walking along with me and told me his mother had explained that Lily was handicapped.  He was so surprised.  He said he hadn't even noticed.   Then he asked if my then five year old son was also handicapped.  "No," I said.  "Well, he acts really weird sometimes," the boy replied. "I wonder how you can tell when little kids are handicapped."  How indeed?


Miggy:  How can people best approach or respond to Lily? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Emily:  Just like anybody, Lily likes to hear her own name and to be spoken to directly.  She's incredibly expressive and very friendly.  Lily is still learning some things most four year olds have mastered, so other kids are a little confused.  I would love it if parents would say, "She's still learning…" instead of indicating that there is something wrong with Lily; it's really a matter of pace not potential.


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?    

Emily:  Lily took away my fear.  I was a world-class worrier.  I don't know if it made me feel important to have something major to worry about, but it's a colossal waste when what if hijacks what is.  Whatever comes our way, I'm sure we'll be able to figure something out. Having a child with mental disabilities was one of my big fears, but I didn't have "a child," I had my child.  I had Lily.  She's not afraid of anything and I honor her spirit by not being afraid either.

                              Suzieque Photography

Miggy:  If you could say something to the mom who just starting on this journey of special needs, what would you say?   What would you say to yourself if you could go back in time?    

Emily:  The easiest thing is to introduce Lily.  If I had to use words, I would say How are you feeling about it?  And then I would listen.  There is so much to consider and feel; all of it different than we were expecting.  It's really important to allow yourself to feel everything without guilt.  
I would share my favorite book about unconditional love.  And I would share this video

If I could go back to before I had a child with DS, I would tell myself, "She will help you let go of expectations for all of your children.  None of them are 'typical.'  Prepare to be amazed."

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Emily, thank you SO much for this spotlight.  It's so wonderful to see that beautiful baby all grown up.  I love what you said about how Lily helped you let go of expectations for all your children... what a beautiful gift.  For any of you wondering if Emily really is this awesome in real life... the answer is no.  She's awesomer.  I feel grateful to know her.  And please dear readers, do yourself a favor and watch the last video Emily posted.  

As always, if you or someone you know would like to participate in the special needs spotlight series please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!

4 comments:

  1. Emily really is that awesome. I'll vouch for the truth of that claim.

    -Lynaya Hernandez

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  2. Powerful. I feel like cheering out loud that I get to know Lily and Emily and the whole amazing crew in real life.... I feel inspired every time I interact with them and this is no exception. beautiful and applicable to all of us. Thank you for this!

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  3. Linda P.7:13 PM

    Thank you once again, Miggy, and thank you, Emily, for sharing your experiences, thoughts, concerns, and triumphs. I have a special needs young adult son, and I really appreciate hearing what others' experiences are. You sound like a great mom, and Lily sounds like a great little girl!

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  4. Anonymous6:50 PM

    Thank you so much for all these “Special Needs Spotlights,” they really help me better understand what it's like to raise a child with special needs and how to respond appropriately. I especially love Lily's story. She is beautiful and I can clearly see that she brings so much joy to her family and to the world! Some of the sweetest people I know have Downs Syndrome and I absolutely love all of them to death! And I am so glad that Lily has been born into such an amazing and accepting family with a sense of humor to help them through the challenges they may encounter. Laughter truly is a beautiful thing!

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