{"id":1505,"date":"2013-07-28T13:00:36","date_gmt":"2013-07-28T20:00:36","guid":{"rendered":"http:\/\/www.lindacollison.com\/?p=1505"},"modified":"2013-07-28T13:00:36","modified_gmt":"2013-07-28T20:00:36","slug":"young-writers-dublin","status":"publish","type":"post","link":"https:\/\/madhatdesign.com\/newsite\/young-writers-dublin\/","title":{"rendered":"Young Writers in Dublin"},"content":{"rendered":"

I’m just back from Ireland, where I led a writers workshop for young adults at the\u00a0\u00a0VCFS International Scientific Meeting<\/a>, a conference\u00a0which brought together researchers, students, medical specialists and families dealing with the disorder from all over the world.\u00a0 One of my favorite researchers presenting at the conference was Dr. Tony Simon, of the U.C. Davis M.I.N.D. Institute<\/a>.\u00a0 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.<\/p>\n

This year there were many activities designed for teens and young adult attendees, one of which was my writers workshop.\u00a0 We did some free writing, some\u00a0journaling, and\u00a0 I’m pretty sure I learned more\u00a0from the attendees than they learned from\u00a0me!<\/p>\n

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.\u00a0 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,\u00a0 as well as psychiatric disorders.\u00a0 Over 180 symptoms or anomalies have been identified, and no two people with the 22q deletion present exactly the same.\u00a0 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 <\/a>— 22q, for short.<\/p>\n

My granddaughter has 22q11.2 deletion syndrome.\u00a0 The deletion\u00a0happens during meiosis and it happens randomly.\u00a0 It’s not a question of mother’s age.\u00a0 22q11.2 deletion is not uncommon; the occurrence is thought to happen 1:2000 births.\u00a0 Many people presently go undetected for some years, if they don’t have a severe cardiac malformation.\u00a0 My granddaughter has had numerous medical problems and surgeries, but her biggest challenges are cognitive, social, and emotional.\u00a0 Yet as a writer, she is already better than many people who have no cognitive impairments.\u00a0 Lauren writes\u00a0vividly and evocatively to explore her deepest fears and anxieties.\u00a0 She is currently working on a novel called Stalking the Undead.\u00a0\u00a0<\/em><\/p>\n

Although 22q11.2 deletion syndrome <\/a>can’t be cured or even prevented, medicine can address most of the physical abnormalities.\u00a0 The psychiatric, the social, the cognitive problems are much harder to fix.\u00a0 Interestingly, many people with 22q deletion are extremely creative, even when they are intellectually impaired.\u00a0 Some, like my granddaughter, find themselves through language arts.\u00a0 The\u00a0young writers who attended the workshop expressed themselves through poetry, essays, memoir\u00a0and fiction.\u00a0 Each had her own voice and style.\u00a0\u00a0Each moved me deeply.<\/p>\n

I used to feel like I lived in a dark hole<\/em><\/p>\n

Where I felt cold, there was nothing I could hold…<\/em><\/p>\n

— from a poem by Aine Lawlor\u00a0titled Me Before, Me Now.<\/em><\/p>\n

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.<\/p>\n

…Now I have a choice, now I<\/em><\/p>\n

make people listen to my voice.<\/em><\/p>\n

So right, Aine.\u00a0 And how to make people listen to our voice?\u00a0 To what we have to say?\u00a0 That is ever the writer’s dilemma.<\/p>\n

…All I need to do is be honest and<\/em><\/p>\n

be true.<\/em><\/p>\n

Once again, the teacher learns from the pupil.<\/p>\n

Internationally known photographer Rick Guidotti,\u00a0has\u00a0an eye for honesty and truth.\u00a0 Rick, beloved by all\u00a0who know him, brings out the best in all of us.\u00a0\u00a0 We were so fortunate to have Guidotti at the conference, capturing\u00a0the truth and the beauty of\u00a0those with differences.\u00a0 Check out this NBC clip about Rick’s work. \u00a0Rick Guidotti re-interprets beauty<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

I’m just back from Ireland, where I led a writers […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,208,85],"tags":[],"class_list":["post-1505","post","type-post","status-publish","format-standard","hentry","category-uncategorized","category-what-inspires-me","category-writing-and-publishing"],"_links":{"self":[{"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/posts\/1505","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/comments?post=1505"}],"version-history":[{"count":4,"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/posts\/1505\/revisions"}],"predecessor-version":[{"id":1510,"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/posts\/1505\/revisions\/1510"}],"wp:attachment":[{"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/media?parent=1505"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/categories?post=1505"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/madhatdesign.com\/newsite\/wp-json\/wp\/v2\/tags?post=1505"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}