Jessie`s Story

Connections
Information + Support
Families of Children with Special Needs
Alleghany, Ashe, Avery, Mitchell, Watauga, Wilkes, & Yancey counties
FAMILY SUPPORT
NETWORK HIGH COUNTRY
2359 Hwy 105
Boone, NC 28607
Phone:
(828) 262-6089
Toll-Free Family Line:
(866) 812-3122
Fax:
(828) 265-5394
Email: [email protected]
parent2parent.appstate.edu
Our Staff
Kaaren Hayes
Director & Outreach Coordinator for
Avery and Watauga
Norma Bouchard
Outreach Coordinator for
Allegany, Ashe, Wilkes Counties
Teresa Emory
Outreach Coordinator for
Mitchell and Yancey Counties
828-682-4772
Advisory Board Members
Jeannie Caviness
Allie Funk
Rose Matuszny
Alice Naylor
Helen Phillips
Amy Roberts
Jessica Thackray
An Affiliate of
Family Support NetworkNorth Carolina
With Support From
Appalachian State University
Children’s Developmental Services
Agency—Blue Ridge
High Country & Mitchell United Way
Friends of Family Support
Network—High County
Avery Partnership for Children
Mitchell-Yancey Partnership for
Children
Yancey United Fund
Summer 2012
Jessie’s Story
By: Dayne Alexander
When she was very young, Jessie Jackson developed in much the
same way as others her age. When she
was five years old, Jessie could climb
trees and talk with a bit of a stutter. By
first grade, she had lost most of her
speech. By age nineteen she had lost
most of her spoken voice; she could say
around one-hundred words. Today, a
year later, Jessie can only say the word
“mom”. She uses a wheelchair to get
around and a speaking device to help
her communicate with those around her. Jessie has type II gm1 gangliodosis, a rare condition that was diagnosed after fifteen-and-a-half years by a
special research team in Maryland. Most people would give up if they were
in her position, but Jessie refuses to do so. Although her condition is degenerative, Jessie is determined to live her life to its fullest potential.
When Jessie was five years old, she began to notice that she could
not run and do things like other kids her age. Seeing how upset she was over this, her grandfather
sat her down at a table with a deck of cards. Showing her the deck, he told her that she had been
dealt difficult cards. He then told her that she had
two choices: she could fold or play her hand. That
day was the last time Jessie ever sulked; she chose
to play her hand and has not complained since. Her
mother, Merlie Jackson, says that Jessie is “all
about adventures”. She loves to go shopping, ride
horses at Blazing Saddles, and travel. Jessie also
enjoys going to drag races; Merlie says for her it’s
“The louder the better! She’s crazy!” She has also ridden twice in a wheelchair accessible hot air balloon, played at Disney World, sang karaoke with
her speaking device, and presented a powerpoint in front of four-hundred
people at a conference.
CONNECTIONS
Attending conferences and events around the country, Jessie never fails to make new friends.
There is even a joke in the Jackson family that they have
never left a hotel without the maids and everyone at the
front desk talking to her and saying goodbye. In Florida,
Jessie once met an elderly couple from Spain by the pool
and they are now friends on Facebook. Her mother says
that Jessie is always sure to make contact with everyone
around her. She goes one-hundred miles an hour, soaking up experiences and making the most of her life. Jessie
cannot go to college or live on her own, but she has
changed so many lives and done so much good already.
Jessie and her family’s advocacy have led other families
to have their children tested for various conditions that are
not in standard testing. She and the rest of the Jackson
family have saved others from years of pain, confusion, and frustration. How many other twenty year
olds can say that they have had this kind of impact?
Jessie is the kind of person who is always on the go, getting the most out of life. She is the
kind of person who is late to school because she stops to enjoy the new flowers blooming outside of
the building. She refuses to give up or to hide herself away because it is all too difficult to deal with.
Of her daughter’s thirst for adventure, Merlie says “She’s going to experience life and life needs to
get ready for Jessie.”
Spread the Word to End the Word!
The R-Word Campaign is a mission to end the use of the word “retarded.”
Make a pledge not to use the r-word and promote inclusion and acceptance
of those with intellectual or developmental disabilities.
Visit their website to pledge the campaign now!
www.r-word.org/r-word-pledge.aspx
Tips on how to Spread the Word in your school, community, workplace, or
online social network:
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Follow them on Facebook, Twitter, and YouTube
Learn how to Spread the Word in your community
Get involved in Special Olympics or Best Buddies
 Share their Videos
 Host a Youth Rally for Respect
 Get Merchandise to help Spread the Word
Find out if your state has made legislative changes
 Share their Photos
CONNECTIONS
More on the iPad!!
Help children develop new skills and refine old skills today!
The iPad brings children an interactive experience with multi-sensory feedback that can teach
children a wide range of necessary skills. It can teach children cause and effect, fine motor skills,
communication, and socialization! The Apps (programs) on the iPad can help promote children’s
participation in activities and routines by using positive feedback and engaging tactics. Some Apps
are free while others are inexpensive.
From daily routines at home to routines at school, there are numerous Apps that can help
children engage in those routines step by step. They give visuals, model socialization skills, and help
develop language and fine motor skills. There is literally an App for every situation. In addition, the
iPad is portable and lightweight, so you can use it anywhere! Also, it helps these children feel like
they fit in with all the other kids at school!
iPads price range from $199-799+
Some websites that help find apps and also reviews!
http://a4cwsn.com/
http://bridingapps.org/
Proud Partners of High Country FIF!
High Country First In Families helps assist families and individuals of all ages with developmental
disabilities or traumatic brain injuries in becoming self-sufficient, involved members of the community. They serve Alleghany, Ashe, Avery, Watauga and Wilkes Counties. Examples of support include
iPads, computers, monthly bills, oil for winter, summer camps, ramps, respite care, and repairs to
vehicles, just to name a few. They are not a charity program. Their goal is to link families to resources in the community and help them find long-term solutions.
For Mitchell and Yancey, families can go to
http://www.fifnc.org/help/local.html.
When they click on their county, they will be taken to instructions on how to apply for assistance in
their county.
Please contact Bethany (Program Coordinator) at [email protected] or Jessica
(Resource Coordinator) at [email protected] or check them out on Facebook at
http://facebook.com/HCFIF
CONNECTIONS
Family Support Network-HC
2359 Highway 105
Boone, NC 28607
If you have an email address, please email us at
[email protected] to receive the newsletter
electronically. Help us save dollars and trees!
Self Advocacy Tip
Courtesy of the Disability Rights of North Carolina
Know what you are going to ask for before the meeting or
phone call and write it down.
Plan how you will respond if you don’t get what you ask for!
For more information visit the Disability Rights of North Carolina at:
http://www.disabilityrightsnc.org/
Area Support Groups: Contact Information
Ashe County Support Group: Norma Bouchard at 336/246-3222 or toll free: 866/812-3122 or [email protected]
Mitchell County Support Group: Teresa Emory at 866/448-5781 or [email protected]
Watauga County Support Group: Kaaren Hayes at 828/262-6089 or toll free: 866/812-3122 or [email protected]
Wilkes County Support Group: Norma Bouchard at 336/838-0977ext. 212 or toll free: 866/812-3122 or [email protected]
Yancey County Support Group: Teresa Emory at 828/682-4772 or [email protected]
With Support from