I’m just back from Ireland, where I led a writers workshop for young adults at the VCFS International Scientific Meeting, a conference which brought together researchers, students, medical specialists and families dealing with the disorder from all over the world. One of my favorite researchers presenting at the conference was Dr. Tony Simon, of the U.C. Davis M.I.N.D. Institute. Simon directs the MIND Institute’s Cognitive Analysis and Brain Imaging Laboratory (CABIL, pronounced “cable”). CABIL’s mission is to investigate, explain and eventually treat the impairments in cognitive function experienced by children with neurodevelopmental disorders.
This year there were many activities designed for teens and young adult attendees, one of which was my writers workshop. We did some free writing, some journaling, and I’m pretty sure I learned more from the attendees than they learned from me!
The remarkable young people who took part in the workshop are all affected by a micro-deletion on the q arm of the 22nd chromosome; they all have 22q11.2 deletion syndrome, which presents in a myriad of phenotypes. Some have VCFS — velo-cardio-facial-syndrome, while others are affected in other ways, such as endocrine and immune disorders, learning differences and in many cases, impaired intelligence, as well as psychiatric disorders. Over 180 symptoms or anomalies have been identified, and no two people with the 22q deletion present exactly the same. In the past the disorder has been called by a variety of names, including VCFS, DiGeorge, Conotruncal Anomaly Face Syndrome, but the current trend is to call them by the genetic name, 22q11.1 deletion syndrome — 22q, for short.
My granddaughter has 22q11.2 deletion syndrome. The deletion happens during meiosis and it happens randomly. It’s not a question of mother’s age. 22q11.2 deletion is not uncommon; the occurrence is thought to happen 1:2000 births. Many people presently go undetected for some years, if they don’t have a severe cardiac malformation. My granddaughter has had numerous medical problems and surgeries, but her biggest challenges are cognitive, social, and emotional. Yet as a writer, she is already better than many people who have no cognitive impairments. Lauren writes vividly and evocatively to explore her deepest fears and anxieties. She is currently working on a novel called Stalking the Undead.
Although 22q11.2 deletion syndrome can’t be cured or even prevented, medicine can address most of the physical abnormalities. The psychiatric, the social, the cognitive problems are much harder to fix. Interestingly, many people with 22q deletion are extremely creative, even when they are intellectually impaired. Some, like my granddaughter, find themselves through language arts. The young writers who attended the workshop expressed themselves through poetry, essays, memoir and fiction. Each had her own voice and style. Each moved me deeply.
I used to feel like I lived in a dark hole
Where I felt cold, there was nothing I could hold…
— from a poem by Aine Lawlor titled Me Before, Me Now.
Aine is a young adult with 22q, who writes poetry and essays, plays the violin, bowls, dances the Irish jig, and inspires all who know her.
…Now I have a choice, now I
make people listen to my voice.
So right, Aine. And how to make people listen to our voice? To what we have to say? That is ever the writer’s dilemma.
…All I need to do is be honest and
be true.
Once again, the teacher learns from the pupil.
Internationally known photographer Rick Guidotti, has an eye for honesty and truth. Rick, beloved by all who know him, brings out the best in all of us. We were so fortunate to have Guidotti at the conference, capturing the truth and the beauty of those with differences. Check out this NBC clip about Rick’s work. Rick Guidotti re-interprets beauty