Raising Quinn

I knew in utero about my son's heart condition...but was told when he was born that he tested for 22q (VCFS).  Your son's courage and high profile parents gave us the needed in to get interviewed by our local news station, along with another local family.  We thank you for believing in Quinn and helping him to change, or at least educate,the world.

cyberhugs from one parent to another!

Diane

My son was diagnosed late with 22q11, in his mid teens.  While it was sad to have a hard 'black and white' name, and knowing it was 'permanent', there was also a sense of relief in that things finally made sense. He'd had 30-40 of the 180+ signs since birth, and it seemed every couple of years something new would come up medically.  All things considered 22q-wise, and compared to others, he's relatively mildly affected, but the ongoing medical issues are something he has to learn to deal with. But school is difficult and he has lost confidence and self-esteem. He needs to find something he likes and develop skills.

Sally,

I just saw your interview with Diane Saywer and I am anxious to get Quinn's book.  My son did not have VCFS, but was diagnosed with Epilepsy at the age of three.  Along with the seizures, he had a multitude of learning disabilities.  Your comments paralleled my own feelings when I realized that something was "wrong".  Chris was my only child so I had no point of reference in which to measure symptoms I "missed" initially.  I went through about two years of a sort-of self-conflagration, too, about what I had  possibly done wrong in my pregnancy (I didn't even drink coffee for nine months!!).

Special Education was not in my vocabulary and when it was obvious that this was a route we would have to take, I was ashamed.  Shame on ME!  What would I tell my family?  How would our friends react?  I knew the glances of those other parents at preschool, never having a playdate initiated by them.  I couldn't even fathom how difficult it would be for my son!

I have to say that when he was finally diagnosed, I, too, was relieved.  Finally, something to confirm what I knew was not right but couldn't quite put a finger on.  I finally learned to accept and become an advocate for him.  I learned everything I could about disabilities and epilepsy.  The "R" word was banned from our house (retard), even though kids at school could be so cruel.  Instead of mourning the loss of what I had hoped our lives would be, I looked at our situation and accepted that this was what it was. I knew I needed to use this as a tool to educate everyone I could and to keep Chris involved in as many things as possible just like other kids (which was more often than not an overwhelmingly daunting challenge!).

When Chris was in ninth grade, I just couldn't imagine what we were going to "do" with him after high school. He couldn't even keep a job with his seizures.  He had so much anxiety and his learning was so fractured (he would go through cycles of having 40-50 seizures a day) I couldn't possibly see how he could even get accepted to a college, let alone survive independently in the real world.  Luckily, living in Vermont and working at a high school in Special Education, I knew of a college for learning disabilities.  Luckily, Chris was accepted at Landmark College, a two-year college for students with ADHD and LD.  It was a life-changing experience for him.

After he was accepted (and before he started) at Landmark, he had brain surgery which successfully removed the portion of his brain that was causing the seizures in the frontal lobe.  (The medical issues are an entirely separate story in themselves, as you know!)  It took him three and a half years to get his associate's degree, but he is now at a "regular" college finishing up his bachelor's degree, and actually talking about his master's degree.

When I went with him on "Transfer Student" day at his current institution, he and I met with the support services counselor.  Without me prompting him, he explained how he learns, what strategies seem to work best for him, where he needs the most support and how he would like to set up his support program.  I was astounded and it took everything I could muster to keep from "losing it".  He had become such an advocate for himself and while the social scars of his childhood were not totally healed, he could stand up for himself and hold his head high.

At 46, I went back to school to become an elementary special education teacher.  I had worked with high school students for 14 years and felt it was time to try and give parents of younger children some hope.  I am working on my own version of "our"story at the persuasion of one of my professors and several family members.  I work with parents through the Epilepsy Foundation of VT and have tried to create a greater understanding for children with disabilities.  I have corresponded with Dana Buchman (A Special Education) and have read Ann Ford's account of her daughter's experience in Laughing Allegra.  It is so difficult to impart the agony of a parent of a child with chronic health and learning issues.  This is why I'd like to thank you for your candor and I share in your pride and exuberance in seeing Quinn become the incredible young man he obviously is.  Always know, Sally, that his success comes from an incredible mother and family who stood up when it would have been easier to curl up and hide.  You were his encouragement, his rock, his guide to knowing that it would be ok.

As parents, we need to keep the dialogue open and ongoing.  I applaud you, Quinn and your supports.  I am looking forward to reading his book and to passing it along to my son.  Thank you for the courage to share your story.

Sincerely,

Penny Adams LaPointe

Dear Sally,

   I came upon Quinn's story in the March 30th edition of Newsweek, and have since read his book "A Different Life".

   Our son, David, the middle of three sons, has a profound learning disability. His disability is not due to VCFS, but to neonatal anoxia secondary to the umbilical cord wrapped three times around his neck. As a consequence, he developed short-term memory loss, learning disability, petit-mal epilepsy, grand-mal epilepsy (after a number of falls and head injuries), psychological problems (related to his many failures and rejections)...and to top it all off, David was diagnosed with a malignant brain tumor 20 years ago. He was obviously treated successfully at the Children's Hospital of Philadelphia. We too were told by a pediatric neurologist early in David's life to "put him in an instution, and forget about him" 

   David is our Job and like Job has taken it all as "the will of God", although he is not particularly religious. He is now doing as well as he ever has... working, living alone,graduated from Drexel University with a BSc and is finally getting excellent psychotherapy (Intensive Short-term Dynamic Psychotherapy, as developed by Habib Davanloo MD of Montreal, Canada).

   David's issues are very much those of Quinn's...acceptance, girl friends, independence (from his parents), feeling good about himself etc.

   David's parents, like Quinn's, are accomplished and successful... although not to the same extent. Father is a pediatric urologist (now retired) and mother an architect/real estate developer. Susan, David's mother, like yourself, has been a aggressive and tireless warrior on David"s behalf for the 39 years of his life. The two of you would have a lot to talk about.

   We have a beach-house in Sag Harbor NY and I would like to invite you to have lunch with us at the American Hotel, one day this summer.

Hyman Rabinovitch MD

I so understand your story and face unbelievable obstacles daily about guilt, saddness, anger, over why on earth would I have a child who has only been put on this earth to struggle.  Then I look at Kasey, my son with VCFS, and he doesn't look, act, or even remotely look disappointed, ever.  This journey with VCFS is lonely, and I so appreciate you sharing Quinn's life and your feelings of being a mother of a child who is affected by this genetic condition. 

It was so amazing to hear that Quinn had been on TV, as I have written Oprah a million times in hopes to educate people on VCFS, since she has such an amazing platform for getting issues out.

I pray daily that my son finds a fit in this life and his dreams can be fulfilled.  We as parents just want the comfort that they are happy and safe and can live in this world without harm or predjudice about how God made them.

I saw you on the View and I want to thank-you for giving us hope.  They tell us our daughter wmight never talk, she might need special ed, and never have a life of her own, but we keep pushing her to do things and after seeing you  I now have hope for her.  She is only two now and I hope she can do as well as you have she was a drug baby we adopted and love as our own. Thank-you for the hope keep up your good work.

Dennis Gerst

Thanks for the interview--and for letting Quinn do most of the talking.  I am telling my friends and colleagues about his site.

Tanya S. Castiglione. Ph.D.

i'm alone in my struggle to educate and nurture and love my child.  i know you know how difficult it can be getting through the day, let alone trying to learn what it is that ails him, and then be enabled and capable of doing.  there is a long journey ahead, and you've made it possible ... with hope and understanding ... and humor never hurt anyone.

thanks for sharing.

My son never had any heart problems so he went undiagnosed until he was 6.  An ENT noticed his carotid artery wasn't where it was supposed to be.  But he has mostof the other problems associated with VCFS.  His mother and I have dedicated ourselves to him and the rewards have been amazing.  He is a wonderful and thoughtful young man.  He just graduated from a private Jesuit High School and is on is way to college.  We watch carefully what he takes and he has to take less than a full load.  But he has accomplished more than any of us ever thought possible.

My dilemna is we haven't told him about the VCFS.  His mother doesn't want to tell him.  When did you tell Quinn?  How was it when you did?  

GHD Australia was the earliest institution to take advantage. GHD straighteners sale of ceramic plates within their straighteners. Ceramic could possibly be the best product for locks GHD Dark IV Styler.Hair Straighteners using the reason that it conducts heat probably the most properly also it permits the metal to slide by utilizing the locks without any snagging.The genuine GHD Midnight Deluxe Gift Set also experienced no warm places in contrast to other irons. GHD Eras Glamour Hair Straighteners quantities of competition which could discount ghd burn up and harm hair. The genuine GHD Pure IV Styler released a matrixed heating element to be certain even heat distribution by utilizing the plate to cut back warm places and broken hair.The engineering inside the genuine GHD Boho Chic Limited Edition Straightener also permitted the metal to heat up quickly and sustain its temperature. GHD Gold IV Styler reached its optimum temperatures in about 10 seconds which was a good offer sooner than its competition. GHD Purple Gift Set also maintained its temperatures a good offer better than other irons that lost heat since it experienced been absorbed to the hair.That have to be it, your GHD Diamond Limited Edition full and now with the instant of truth, plug your GHD Butterfly Pink 2010 straightener in and move them on. nicely done, you're now a ghd assistance expert, go available and locate far more GHD Precious Gift Set and do far more ghd repairs.

The <a href="http://www.winterboots-uk.net/"><strong>ugg boots sale</strong></a> was a quintessentially Australian product. Traditionally <a href="http://www.genuineuggboots-au.net/"><strong>genuine ugg boots</strong></a> are worn outside the trousers. It is now the norm to find <a href="http://www.winterboots-uk.net/women-ugg-short-boots-c-12.html"><strong>Women Ugg Short Boots</strong></a> in the stores and online which feature a wide range of colors including bright reds and greens or pinks <a href="http://www.snowbootsaustralia.org/"><strong>ugg boot</strong></a> , and all sorts of other bright colors. In the past you had little choice for your <a href="http://www.genuineuggboots-au.net/"><strong>ugg boots</strong></a> but they are now available in a wide range of colors and styles. <a href="http://www.snowbootsaustralia.org/women-ugg-boots-c-8.html"><strong>women snow boots</strong></a> made from pure sheepskin. The outer covering of the <a href="http://www.snowbootsaustralia.org/"><strong>ugg boots</strong></a> is the outside of the sheepskin, and the warm woollen part of the skin faces in. The <a href="http://www.winterboots-uk.net/"><strong>Winter boots</strong></a> is usually a high fitting <a href="http://www.genuineuggboots-au.net/"><strong>ugg boots sale</strong></a>, and usually much higher.