In 1999 a grandparent to a child with Down syndrome (DS) was having
support meetings in a little building behind a local hospital for parents
of children with DS. A couple of parents, and grandparents continued
to stay in contact, even though the group dissolved due to lack of
attendance. This small group of parents and grandparents, studied,
and talk to everyone they could in reference to services, supports,
and information. The closest DS support group for families was more
than a 2 hour drive from Bay County. Some of the families participated
in Councils for the State of Florida as parents of a child with a disability.
These parents were invited to conferences about children with disabilities,
and they attended conferences in other States, at their own expense
and brought back information to share with other families. This process
has continued since 1999, and these family members are still an encouraging
driving force for this newly formed corporation Acton Up With Downs,
Inc. (AUWDI).
This history illustrates the determination, dedication, and dependability
of the founding members and is believed to give validity to this
newly formed Corporation, so not to be seen as a “fly by night” group.
There has been much time, effort, and money spent getting to this
point of our journey. In the decision to take support a step further,
because we saw and experienced the need for such a group. Acton Up
With Downs, Inc., (AUWDI), was started September 2006 just prior
to our 1st Annual Buddy Walk. The group gathered in homes, offices,
public parks, and churches to share information collected about DS.
We shared how to educate our kids, how to advocate for our kids,
and how to bring about awareness and inclusion in our community.
During our first year, AUWDI was once again was called to help with
organized support meeting. AUWDI collaborated with Children’s
Home Society, Early Intervention Department, to provide family support
services to a group of parents & caregivers of children with
DS age’s birth to 3 years and share expenses on the snacks.
Eventually Children’s Home Society, Early Steps program dropped
their group, and AUWDI picked up all ages, but mostly ranging between
birth to 13 years of age.
We stay in close contact with other agencies so not to duplicate, but cooperate with educational opportunities, updates, and expansions of services. AUWDI, as part of our mission to provide resources and referrals to the community, the group publicizes ongoing organization’s efforts instead of replacing them. In turn, we have spoken to several public service groups to tell them about AUWDI and our mission, vision, and values, as well as, local therapists, doctors and school district offices. We are eager to meet with anyone desiring information about DS. We have spoken before the FICCIT Committee, the Pilot’s Club, the Miracle League Committee, and have actually sponsored the kick off dinner for the Miracle League Fundraising Efforts. We have participated in the Jaycees Christmas Parade and won the Spirit Award for the 2007 Jaycee’s Downtown Christmas Parade. We have been representatives on the ESE Advisory Council at the Bay County School District at the parent participation level, and have sat in on the Partners in Transition in the capacity as parent/family Involvement Committee.
AUWDI maintains a list of active members who are willing to talk with anyone in need of emotional support. We build individual relationships one at a time. We seek to encourage and give hope based on our own experience to anyone who is struggling with issues related to Down syndrome.
We currently mail our AUWDI Newsletter to 365 people, comprised of family members, self advocates, organizations, donors, businesses and professionals. We email the newsletter to another 70 contacts. This year we contracted someone to set up our website, and then someone stepped up and volunteered to finish building, managing, and sponsoring a website for free at www.ActonUpWithDowns.org . AUWDI has a P.O. Box for mail and a physical address that is used as a business site for record keeping and storage. This physical site will also become a future gathering place for playgroups, workshops, committee meetings, tutoring, work groups, etc. AUWDI has its own email address, ActonUpWithDowns@knology.net that has been very helpful in our communications all over.
We have hosted quarterly meetings with educational
guest speakers for the past two years, these meetings have come to
be known as our Family Support Meetings. Childcare is provided at
theses quarterly meetings and we are expanding our "Kids Group" to
offer more organized activities and to give access to more leisure/sports
opportunities. We also organize “Greet and Chat” get-togethers
once a month so members have an opportunity to just relax and share.
We are reestablishing a playgroup that will meet at local parks.
We have plans for a FETA (From Emotions to Advocacy) group to be
started; this group follows a book written by Pete Wright Esq. who
is the founder of Wrightslaw, a well respected source on disability
law and rights. The FETA group furthers our commitment to educate
ourselves and others on the rights of persons with disabilities,
and expanding our ability to advocate effectively for people who
have DS.
The first year of incorporation, we only had one fundraiser, the
Buddy Walk which is a nationally recognized event through the National
Down Syndrome Society (NDSS). NDSS offers use of their national logo,
website materials, manual, and PSA’s to assist groups like
AUWDI promote acceptance and inclusion of people with DS. A percentage
of the net proceeds we raise from a Buddy Walk are donated back to
NDSS to support research, education, and advocacy information for
people with DS. The 2nd year we had the Buddy Walk, and smaller fundraisers
with national chain restaurants. These restaurants, on a chosen day,
will donate a percentage of all orders earmarked to support AUWDI.
The group also has sponsors who donate money to help offset the expenses
involved with the publication and distribution of the newsletter
we send out bi-monthly. These sponsors receive ad space in the newsletter
as recognition for their contribution.
We have sent a family to the "National Down Syndrome Conference" in
Kansas City, MO last year. And this year we are sponsoring 3 families
with $400 scholarships to attend the "Down Syndrome Conference
in Orlando", August of 2008. We are also, assisting in sending
a family to the "Family Café Conference" in June
2008. Some of our parents have attended "One Summer Goal Conference" about
inclusion in the Florida education system. Some of our board members
have been invited to apply for gubernatorial appointed seats such
as, Florida Interagency Coordinating Council for Infants & Toddlers,
and the Partners in Policy Council. We have sent future adoptive
parents of a child with DS to a Down Syndrome Clinic in Orlando,
March of 2007 prior to the finalized adoption so the adoptive parents
could be better prepared to care for a child with DS, and to get
the child assessed by varied professionals at the clinic. In the
future, one of AUWDI’s goals is to host the first "One
Day Down Syndrome Clinic" in the Florida Panhandle where clients
can receive evaluations & assessments on the multitude of medical
checks necessary for individuals who have DS. This is especially
important to those who cannot travel the distances or do not have
the financial resources, restrictions with work, etc. The panhandle
is sparsely populated compared to the rest of Florida, hence medical
resources are limited. DS can produce a myriad of medical conditions
which need specialist to diagnose, treat, correct and monitor. This
fact leaves AUWDI members having to travel between 2.5 and 5.5 hours
for routine (relatively speaking) medical care.
Presently we are arranging workshops to make “adaptive reading
books” for our Lending Library. These books make reading accessible
and fun for children with DS. Our Lending Library is currently being
set up with books, software, and equipment that will be available
to borrow. In the future we would like to have more assistive technology
for loan to assist individuals with DS and their families determine
what assistive learning products will work best for there specific
needs before having to invest financially.
.
AUWDI compiles informational flyers, emotional support materials
and contact information into baskets for parents of babies born with
DS. When and if a new parent goes out of town for surgeries (usually
open heart), then AUWDI networks with other county and state DS support
groups to be available for support, comfort and encouragement, or
assist if a family needs visitor information about the area.
AUWDI has come some distance in a short amount of time. We look forward to changing lives in our community of bay County and its outlying counties between Pensacola and Tallahassee. The AUWDI Board of Directors is determined to oversee the operations of the group and to ensure practices are ethical and effective. Our board governance plan is to become more involved with “Affiliates in Action” the leadership conference emphasizing best practices in non-profit management, service delivery, program design and implementation of DS support groups. This will ensure our Board is maturing into a reliable and productive contributor to this community. The groups newly installed Board of Directors are focused, first and foremost, on effectively impacting the community to know individuals with DS as people who have the same value and enjoy the same rights as any other citizen. Children with DS who are adequately stimulated from an early age, receive proper education, and are included in community activities become adults with DS who have appropriate social behavior, make friends and have a high degree of competence. The Board strives to encourage our members to be self-determined, informed, resourceful, goal-oriented, positive and persistent. AUWDI strives to encourage the community to set aside preconceptions and stereotypes, re-evaluate its beliefs, and recognize that individuals who have DS are people first with challenges and differences just like any other human being. The fact that they have Down syndrome is of secondary importance.