“The Silver Lining” A Mother who Buried the Myths Surrounding Down Syndrome.
By MCC Admin
“The Silver Lining” A Mother who Buried the Myths Surrounding Down Syndrome.2020-07-082021-02-11https://makingchromosomescount.co.uk/wp-content/uploads/2020/02/logomcc-v2-1.pngMaking Chromosomes Counthttps://makingchromosomescount.co.uk/wp-content/uploads/2020/06/oxbywfrw.jpeg200px200px
THE SILVER LINING
Thankfully, the COVID-19 lockdown has proven that old Down syndrome myths and worries can finally die and be buried, never to be resurrected into the doubting mind of this mother.
My daughter, Christina, is a sixteen-year-old high school freshman who continues to achieve, even though popular belief is that she is (or will be) limited. This lockdown has been like a super-Summer; after the busy year of school and working, I am pleasantly surprised at gains I had not realized Christina was making over the past year. One of the blessings of being home to work and “home-school” is the intense one-on-one experience that has opened a clearer window into Christina’s need areas, abilities, hopes and dreams.
Because I have been concerned for years about her lack of interest in friends, the most satisfying aspect of Christina’s world I have realized during lockdown is her social life and friend–base at school. We live in a neighborhood with mostly boys and no girls near her age. If you’re thinking, “why not play with the boys?”, forget that notion. She decided years ago to be anti-tomboy to the extent of rejecting board games, movies and books even hinting at being male. To be clear, she was not raised this way: I have never been a girly-girl, I enjoy sports, I adore the outdoors, and I am a structural engineer in a male-dominated profession. (Myth busted – she does have a mind of her own, thank you very much!)
Maybe I’m wrong, but I believe the fairy tale relationships we see on the news of typical kids befriending and establishing tight bonds with kids with Down syndrome are few and far between. As far as I can tell, as Christina has gotten older, these types of friendships have faded away likely due to the widening developmental gap. Being a single, working mom, it is difficult to get acquainted with parents of school friends to help foster age-appropriate relationships. I wished and hoped that participation in Special Olympic sports, our local York Area Down Syndrome Association, and Star Players, a therapeutic musical theater program for differently–abled children, would spawn her interest in friends. While we do have many friends through these groups, most of these friendships are nurtured by bonding moms with the greater need of sharing experiences and advice to help each other to “raise extra chromosomes”.
Then, I became the proverbial fly on the wall, a special needs mom’s dream! Optional Google meetings were scheduled by our schoolteachers for remote “office” hours and lesson time during the lockdown. Christina faithfully attends two hour-long sessions each day with her learning support teacher and other students who choose to attend. During those sessions, accidental eavesdropping informed me of the person Christina is in the school setting. (This led me to practice more deliberate eavesdropping too.) I was very pleased to observe her social interactions with both teachers and students. She is comfortable talking with them. She is humorous and makes them laugh. She is missing them and is motivated to attend office hours to fill the void the lockdown created. Best of all, one of the other classmates who religiously attends these sessions is quite obviously Christina’s B.F.F.
The other day, Christina wrote heartfelt sentiments in a card to send her friend in the mail. Every day, they “race” each other to see who will “get to class” first. They compete and egg each other on, playing educational games on Kahoot and Quizlet. Listening to their banter is music to my ears. (Worry busted – she can make friends without me and is motivated to be with them without my involvement.)
During this spring session, English language arts classes included Shakespeare’s comedy, A Midsummer Night’s Dream. Using the kid-friendly No-Fear Shakespeare version of the play, we worked the way through each act exploring all the expected English subject matter. Initially I had reservations. However, after reading the first act and exploring literary subtleties in the text, I was astounded at her enthusiasm and understanding. With read-aloud sessions and guidance, she enjoyed working out nuances woven into the writing. Perhaps her preoccupation with boys helped to pique her interest as this play includes so many love triangles it can make your head spin. Also, she has always enjoyed the play format, assigning parts to herself and others, and practically forcing all to practice ad nauseum. Although they are finished with it, Christina continues to carry around her play, and reads it over and over, inserting people she knows for Lysander, Hermia, Helena, and Demetrius. She fancies herself as Hermia every time. (Myth busted – kids with extra genetic material do like to explore and immerse themselves in literature too.)
Since taking piano lessons through the Zoom meeting application, Christina has been able to spend more practice time and has made significant strides in music. It usually takes Christina a few months with weekly lessons from her music-therapist piano teacher to “master” a song in a form that sounds beautiful although played from amateur hands. Her song prior to COVID-19 was Michael Bublé’s “Forever Now”, a song we immediately considered written for us when we discovered it. Her goal this past fall was to play the song to me on her sixteenth birthday and she did so with blocked chords.
During the lockdown, she graduated to incorporating arpeggio chords with the melody of “So This is Love” from Cinderella, playing the chords individually, in succession, in lieu of playing them simultaneously. This results in a pretty, romantic sound. Listening to her play, I marvel at Christina’s ability as I watch her small, soft hands navigate the keys. (Myth busted – with visual learning aids and modifications, she can read and play music, and it sounds amazing.)
Since she was born, I always assumed and insisted Christina could and would do things everyone else did. She started learning sign language at eight months old. I used vocabulary words beyond her level. She helped “fold” laundry in pre-school. We used all sorts of flashcards to encourage reading. We used indoor hopscotch boards, dice games, and cards to learn numbers and math skills. The silver lining of the lockdown is that my vision of Christina’s abilities has come back into focus. She will indeed go on to be whom she wants to be and do what she wants to do.
Christina and I have many songs between us with special meaning. Since her birth, “Wonder” by Natalie Merchant has always fortified my resolve to support her dreams. When those doubts start to seep into my soul, I remind myself that she is indeed “one of the wonders of God’s own creation” and she “will be gifted with love, with patience and with faith, she’ll make her way.”
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