Monday, October 25, 2010

31 for 21: A story from a sibling who has a brother with Down Syndrome

I had to share this article today, its from a local girl, Natalie Bonavita Spencer, whom I've never met before.  She grew up here in DuBois yet I have never had the honor of meeting with her.  I met her online ironically a few years back.  This was posted on her facebook today and she said I was allow to repost on my blog.  Her story appears in a book I truly want and need to get soon called Gifts 2 and she is featured on page 77.

In September of 2008, I submitted a story two nights before the deadline.  The story was about Greg and I and was for the book Gifts 2: How People with Down Syndrome Enrich the World, edited by Kathryn Lynard Soper.  I had Matt and my friend, Adirenne, edit the story via e-mail and submitted my story for hopeful selection into the book.  Not too long after, I learned that my story would be included in the book and started the editing process.  Just over a year later, Gifts 2 was published, right around Greg's birthday in October 2009.  This book, along with the first Gifts book, provide first hand accounts of what it's like to live with someone with Down syndrome, from parents to siblings to educators to friends.  Below is the story I wrote for Gifts 2.

Subtle Wisdom
By Natalie Bonavita Spencer

I have never known life without Down syndrome.  From the day I was born, it was everywhere.  When I wanted to play with toys, Down syndrome was there.  When I wanted the attention of one of my older siblings, Down syndrome was there.  When I went to school, to the baby sitter’s, to the mall, to Grandma’s, Down syndrome was there.  But I never saw it.

Gregory Joseph was born in October of 1977; I was born three-and-a-half years later, the sixth and last child to join our family. Throughout my teen and young adult  years, each member of the family has told me how they reacted to Greg’s birth and diagnosis of Down syndrome.  My mother was able to fully accept Greg within the first few weeks following his birth, while my father admits it took him six months to see beyond the Down syndrome and finally “see” Greg. My four older siblings, who were between the ages of eight and twelve, each reported an adjustment period. I, however, can’t remember when I first realized Greg had Down syndrome. He was always just Greg.

What I do remember is having a brother who would play Barbie’s with me and watch the movie Annie with me over and over, singing along with all the songs.  I was the member of my family best able to understand Greg’s “language” and would often interpret what he said for the rest of my family. He may have looked and sounded different to the outside world, but not to me.  His tongue sliding out of his mouth when he was concentrating or tired; the “W” position he sat in, with each leg bent at the knees and each foot touching its corresponding hip bone; his full-body laugh, which prevented all sound from escaping and left only a big smile and a shaking body—these were all parts of Greg, not the Down syndrome.  I saw him no differently than I saw my older siblings, or how they, in return, saw me.

As I entered my teen years, Greg and I were the only kids at home, as my older siblings had all married and started their own families.  I found myself realizing that I didn’t have a typical teen sibling relationship with Greg. I never had to fight for the car, as Greg does not drive.  I never had to fight to watch what I wanted on TV, as we both had our own TVs in our bedrooms.  I never had to fight for the phone, or the living room when friends were over.  There were times I wondered what it would be like to have a “typical” sibling close to my age, but this was my life, and it was okay. Granted, we had our share of times where we bickered, as only siblings can – like over who would get the last Oreo cookie.  During these times, Greg would get mad and storm out of the room, only to come back a half hour later with the most somber look on his face, sighing deeply, and saying “No happy.  Sorry.”  Greg made it easier to let go of some of the teen angst that we all experience.  He taught me that it is possible for someone to give a genuine and heartfelt apology, then move on – a lesson I’m still trying to apply today.

Greg also taught me that it is more than okay to accept someone despite how he or she may look or sound.  It’s easy to judge a book by its cover, but those who do so may miss out on seeing the person beyond the difference or disability. In our home, we get to enjoy Greg’s tradition of calling our father every April 1st, tell him to look at the snow outside, and yelling “APRIL FOOL’S!!” while giggling. We’re aware of things we normally wouldn’t be interested in, such as WWE wrestling and Power Rangers. We watch Greg get up each morning and independently get himself ready for work, from showering, to dressing, to shaving and packing his own lunch, and finally getting himself on the bus, all the while talking to himself and planning out his entire day for all to hear.  We understand that he can find his favorite show on TV at any given moment, despite not being able to tell time.  We realize his abilities far outweigh his disabilities.

Now, as an adult early in my career as a speech-language pathologist – a career I wouldn’t have known about or considered without Greg – I appreciate the subtle ways Greg has affected my life.  He has shown me how to fully accept people for who they are – something he does very easily.  He has taught me that there are many different ways to view a situation and to express yourself.  Without me realizing it on a conscious level, Greg has influenced how I view my students, many of whom come to me with limited speech and language skills due to a diagnosis of Down syndrome, autism, or overall developmental delay.  I know these children each have many abilities that are known to their parents, siblings, grandparents, and extended family members who love them.

Greg has taught me by example that if you can’t make yourself understood the first way you try, you try another method. This has helped me to help Robbie, who is nonverbal, my height, has the strength of ten of me when he becomes upset, and has autism. Robbie enjoys books and puzzles, and can turn on and navigate through a computer better than most adults I know.  He can run faster than I can down the hall and has a great smile.  He is an intelligent boy who is learning how to express himself nonverbally. However, he becomes incredibly frustrated and sometimes aggressive when his wants and needs are not met on his timeline.  Greg’s speech is fairly unintelligible to the unfamiliar listener, and like Robbie, Greg becomes frustrated when he is not understood after a few tries and will occasionally give up.  But more often than not, Greg will take a few seconds and will figure out another way to express what he was trying to say.  Through Greg’s living example, I am aware that although Robbie may not be able to tell me what wants using clear, precise words, that doesn’t mean he can’t tell me another way, either using sign language, pictures, or by taking my hand and showing me.  When Robbie does this, I see his frustration level decrease, just as I do with Greg when his thought is understood and he looks at us all as if he is thinking, “what was so hard about that to understand?”

Because Greg can’t always tell us what he’s thinking or feeling, some may think he does not understand some of the world around him.  My understanding that this isn’t the case has enabled me to help Kiara, who like Robbie is nonverbal.  When I first started working with Kiara two years ago, she was very difficult to engage, barely looking at me when I encouraged her to sign “more” or wave “hi.”  Kiara was very lax in all areas, physically and cognitively.  Then, halfway through my second year working with her, something started clicking.  Kiara started establishing eye contact more frequently, interacting with adults on her own for brief periods, identifying vocabulary, and initiating requests for objects she wants by pointing or gazing.  She began to imitate some sounds and vocalized more audibly.  She would become upset if she couldn’t write her own name.  She also showed us she was very interested in how things work: she would make sure a zipper is zipped up fully, and tried to take apart toys if possible.  She also had a knowing smile when she is doing something she knows she isn’t supposed to do.  Because of Greg, I know that just because Kiara can’t verbally express herself doesn’t mean she’s incapable of understanding when someone’s feelings are hurt, or when someone is mad or sad.  Kiara, Robbie, and Greg understand much more than you might think at first glance – just give them time to show you in their own way.

The subtle wisdom Greg has shared with me is truly significant. It has affected not only my life, but the lives of others. Because I grew up learning from Greg and realizing he is much more capable than not, I look for what my students and others in my life can do. I am willing to give my people the benefit of the doubt more readily because of him. I am grateful that my life has always included Greg as my brother, who has taught me so much and influenced my life in so many wonderful and positive ways – some of which I’m just beginning to understand.


Natalie lives in Pennsylvania with her husband, Matt.  She enjoys her work as a speech-language pathologist.  Her brother, Greg, lives in Pennsylvania with his mother and works five days a week.  He is planning to move into a group home as soon as possible, and will expect a phone call before visits.

Greg's birthday 2008

Christmas 1982

1 comment:

Natalie said...

And even more ironic, we met on, not on a DS site. :) Thanks for wanting to share my story. We really need to fix this issue of never having met in real life. I'm down there enough. :)