The YEAH Council has decided to feature a different disability each month experienced by one of our Council members. We will be sharing resources, helpful sites, book recommendations, a little bit about the disability in a general sense, and then some specific stories from the Council member or members who have that particular diagnosis or something similar.
This portrait of disability will focus on premature babies.
Premature birth is defined as the birth of a baby before 37 weeks gestation. The cause is often unknown. Premature babies are at greater risk for both short and long term complications; including disabilities, health conditions and issues with growth. Significant progress has been made in the care and treatment of premature babies, but not in reducing the numbers of pre-term births. One of the last organs to develop in utero are the lungs, consequently many premature babies spend time on ventilators and have respiratory issues. There are some drugs that can be used to accelerate maturation of the fetus.
The earlier the baby is born the more likely for long term complications. The earliest weeks at which the infant has at least a 50% chance of survival is referred to as the “limit of viability”. As medical care has improves this age of viability has been reduced to approximately 24 weeks. There are rare stories of survivors as early as 21 weeks. There is a significant risk of brain damage and developmental delay at that age.
Having a premature baby is very hard on families as each day can be scary. It can be very traumatic to see your tiny little baby hooked up to wires and monitors and machines and some times the amount of contact a family can have with their premature baby is limited.
Many premature babies will adjust well through childhood and adolescence.

A few words from Cordelia, a council member who was a premature baby:
I was born three months premature at Brigham and Women’s Hospital in Boston MA. My due date was supposed to be November 10 and I entered the world on August 10 1985. I was a micro preemie and was 25 weeks gestational age. At the time my parents lived in Rye New Hampshire. I lived in the hospital for six months. During that time my parents came and visited me. Even at that time I was aware of who my parents were. My parents would have special ways of interacting with me. In January of 1986 I was finally discharged and came home to New Hampshire. About a month later I was diagnosis with Respiratory Syncytial Virus aka RSV bug. I went back into the hospital for another three months and it was an uncertain time for my parents. During that time the feeding tube was placed in. In May of 1986 I was discharged for a second time. I had an oxygen tank and a feeding tube that was with me. I went back and forth to Boston and had health care in New Hampshire. My lungs were able to get new tissue to cover the scars up. Although my lungs are damaged from all the work it took to keep me alive. By 1993 I was using oxygen only at night. No one could believe how much progress I had made in a few years! In 1995 I got my feeding tube removed at Children Hospital in Boston. Having special health care needs is a roller coaster and I give credit to my parents for working together as a team during that time. Even after they divorced they always supported me in my interests. Today I am an advocate for people with disabilities. It been a long journey but I would not have it any other way.
Two resources that helped the family of our Council member who was a preemie:
References
Born Early:The Story of a Premature Baby
Mary Ellen Avery
1983 little brown

Baby Girl Scott
May 24 1987
John. Korty, Director
John Lithgow
Mary Ellen Hunt
A few words from Matthew, a Council member who was a premature baby:
I was born a month early. My lung collapsed 30 minutess after birth, and while they were able to re-inflate it, I live with the aftereffects to this day. I was diagnosed with Pulmonary Hypertension in Middle School and have had to wear oxygen when I sleep since that time. It has also caused me to have to go to the hospital for frequent tests to determine that I am not getting worse. I also have to get a blood test every mo nth to make sure my liver isn’t affected by the medication I am taking for this problem. My due date was September 12. I was born August 12. I lived in the hospital for 444 days at first and then I was in and out because I didn’t eat and I was and am chronically thin. I had to have a Fundoplycation, and a feeding tube put into me at 10 months old.

The web is full of resources to help support families with a premature baby:

http://www.prematurity.org/index.html

http://www.comeunity.com/premature/

http://home.vicnet.net.au/~earlyed/welcome.htm

http://www.premature-infant.com/

http://www.preemieparents.com/

http://kingproductions.com/

http://preemie.info/wp/

http://www.preemie-l.org/newparents.html

http://www.preemievoices.com/resources/

There are many, many books that offer support, help and advice for families, here are some of them:
Newborn Intensive Care: What Every Parent Needs to Know
Edited by Jeanette Zaichkin
Parenting Your Premature Baby and Child: The Emotional Journey
by Deborah L. Davis and Mara Tesler Stein.
The Preemie Parents’ Companion : The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home, and Through the First Years.
By Susan L. Madden
Your Premature Baby and Child : Helpful Answers and Advice for Parents
Amy E. Tracy, Dianne I. Maroney
Breast Feeding Your Premature Baby
by Gwen Gotsch
Your Premature Baby : Everything You Need to Know About Childbirth, Treatment, and Parenting.
Frank P. Manginello, Theresa Foy Digeronimo
The Premature Baby Book : A Parent’s Guide to Coping and Caring in the First Years
Helen Harrison, Ann Kositsky
Your Premature Baby: The First Five Years
by Nikki Bradford
Preemies : The Essential Guide for Parents of Premature Babies
by Dana Wechsler Linden, Emma Trenti Paroli, Mia Wechsler Doron M.D

What does it mean to make something accessible? According to Bing’s dictionary access is able to be obtained, used, or experienced without difficulty. Wikipedia has this to say about accessibilty -Accessibility is a general term used to describe the degree to which a product, device, service, or environment is available to as many people as possible. Accessibility can be viewed as the “ability to access” and benefit from some system or entity.  Accessibility is often used to focus on people with disabilities or special needs and their right of access to entities, often through use of assistive technology and as I started my research for our project I encountered a lot of information about how to make classroom learning accessible, including modifying curriculum, large print text books and sensory friendly classrooms.

Most of us think of buildings when we think of access for people with disabilities but it recently came to the attention of the YEAH Council that accessibility means so much more. And that realization has brought us to our new project!! We are working on making the materials we have created for youth with special health care needs fully accessible. What does it mean to make print material accessible? Well, it can mean a variety of things for different people, but the basic meaning is that even paper needs to be modified sometimes in order for everyone to access the information contained in it.  In order to read materials some people need large print, some need high contrast, print with very literal visual distraction or having something done in Braille .  We are currently working on making the materials we have already created around transition into fully accessible materials and plan in the future to create materials with accessibility in mind.

We will also be working on having our materials translated so that they can be accessed by non-English speakers.

Have an interesting accessibility story? Come like us on Facebook and share your story!

http://www.facebook.com/pages/YEAH-Council/267404923281292

The YEAH Council is sponsoring a self advocacy training on Saturday March 10th!! Climbing the Ropes to Independence – Be Your Own Guide will feature keynote speaker Josie Badger, Ms. Wheelchair America 2012!!! This should be a fantastic training!! Here is the info -

Climbing the Ropes to Independence – Be Your Own Guide
Saturday March 10th 9:30-2:30
The Derryfield School 2108 River Rd Manchester NH
YEAH Council Sponsors a Self Advocacy Training for youth and young adults! Come learn the skills you need to speak up for yourself!!! The one day workshop will feature keynote speaker –
Josie Badger – Ms. Wheelchair America 2012
Josie Badger was recently crowned Ms. Wheelchair Pennsylvania 2011 and Ms. Wheelchair America 2012. In April 2011 she completed her coursework and comprehensive examination for her PhD in Healthcare Ethics at Duquesne University and is currently starting her dissertation. She completed graduate school for Rehabilitation Counseling at the University of Pittsburgh in April 2009 and is a Certified Rehabilitation Counselor. In May of 2007 she graduated summa cum laude from Geneva College, majoring in Disability Law and Advocacy and in 2003 graduated high school valedictorian. Josie works at the PEAL Center as Youth Coordinator for the Family to Family Grant, assisting youth in healthcare transition and leadership development. Josie additionally works for the ActNow grant, funded through the Pennsylvania Development Disabilities Council, creating materials for youth to assist them in presenting on issues important to young adults with disabilities. She has served as president and vice president of the National Youth Leadership Network. On the state level, Josie was a founding member and president of the Pennsylvania Youth Leadership Network. She works with Children’s Hospital of Pittsburgh on the Family Forum and the Ethics Committee. Josie was named Glamour Magazine’s 11th Top College Women of 2006.
YEAH Council – Youth Educating Adults about Healthcare – is a group of young adults with special healthcare needs who work on issues of transitioning to adulthood when you have a healthcare need or disability. They are sponsored by NH Family Voices. For more information contact yeah council at yeahcouncil@yahoo.com

Name Number
Email Address
Lunch Included. Please enclose a $10 registration fee, checks can be made payable to NH Family Voices. Please mail registration to NH Family Voices 129 Pleasant St Concord, NH 03301 attn Terry Ohlson-Martin

Last year the YEAH council applied to become the NH chapter of KASA (kids as self advocates) and we got it!! We are so excited to see what changes we can make in the state of NH to make the lives of teens with disabilities better!  At our October meeting we will be going over their guidelines and setting our goals! So exciting!! Click here to check out KASA! http://www.fvkasa.org/index.php