Reflections on the early days of DSANV – then PODS
By Special Guest Blogger Stephanie Smith Lee
When my daughter, Laura, was born in 1982 with Down syndrome there
was no information available for parents – only one awful, outdated,
depressing book in the library. Luckily for my family, members of DSANV,
then called Parents of Children with Down Syndrome (PODS), contacted
me and shared their experiences, hope, and practical tips – such as having
Laura tested for a heart defect. She did have a severe heart defect and
was moved to National Children’s Hospital where she stayed most of the
next two years and had two open heart operations.
I will always be grateful for that early support. When asked, I joined the
small PODS Board and served during the 1980s. We had little money but
big hearts. This was before social media and indeed before the internet
was widely available. We had a newsletter that was printed, collated and
mailed by the students with intellectual disability (ID) at the Fairfax County
Schools Davis Center. Despite the financial and communication challenges,
PODS was active during the 1980s through:
Monthly meetings with education, medical and other experts to share information and respond to questions.
Coffees for new mothers.
Outreach to hospitals to encourage referrals to PODS.
An annual picnic.
Meeting with school personnel from several school districts to
advocate for improved policies.
Representatives attended National Down Syndrome Congress
Conventions and recruited many volunteers when the convention was in Washington DC.
In the early 1990s I organized successful, multi-year state-wide advocacy
efforts to pass legislation and appropriations in Virginia to increase staffing
for students with ID and to stop the state from stripping the state special
education regulations. Many PODS members were deeply engaged in this
effort, making frequent trips to Richmond with me, contacting legislators,
and making a difference.
Over the years, my family and I have had the pleasure of volunteering in
various ways with DSANV. After Laura passed away, it was my honor to
serve as the DSANV Buddy Walk Co-Grand Marshal.
