NYCM employees join together throughout the year to recognize and rally
around various causes. As April is Autism Awareness Month, one specific cause
close to the hearts of many, we are sharing inspiring and courageous stories of
employees and their families to bring awareness to autism. Continue reading
below to learn more.
A Different Way of Navigating the World
Peter French, a member of our Distribution Team recalls the early days
of his 26-year-old son, David’s, diagnosis with autism. “I think we were a
little more equipped than some other parents might
have been at the time. My wife was a special education teacher
and had a lot of experience with children with special needs.” Peter explains
there has been major growth in the community,
as well as resources over the past few decades. “Twenty years ago or so, the
experience of having a child with autism and the process of getting a diagnosis
was very different than it is today. For a long time, there weren’t very many
pediatricians trained in this area in general, let alone programs or resources.
We had to travel pretty far across the state to find support,” Peter explains.
At the time, it was not uncommon for autism to go undiagnosed until the
individual was of school age, which
in turn meant that a person would go on without support or resources for long
periods of time.
“We learned about the spectrum scale over time. In the beginning there
was one (stereotypical) way that autism was known to present. For a while we
didn’t think David had autism because his signifiers didn’t “check the right
boxes.”
Before he was diagnosed, David’s pediatrician
told Peter and his wife Kristen that David was fine and not to worry about him.
With today’s technology and
research, Peter knows that David’s autism would
have been recognized much sooner, as more and more doctors are becoming
familiar with the condition. The truth is autism doesn’t manifest the same way
in every individual. Peter goes on to say that almost immediately after David’s
diagnosis, they were able to get him into an integrated pre-school with proper services
and support. Peter knows that this was the best possible thing for David and
that it helped propel his success.
“Once there were professionals involved who knew how to approach the
situation - we started seeing truly remarkable results.” Peter noted that
although it was an emotional and at times nerve-wracking time in their lives,
they recognized how fortunate they were to have gained the support they
did, because not everyone who was experiencing this has had the same resources.
Upon receiving David’s diagnosis, Peter and Kristen decided that in order
to put David in the best possible position for growth,
they would need to move somewhere he would be well supported - not only in the
community but in resources as well. Peter says that they knew David would need
to live somewhere that was walkable, and that had a strongly connected inner
community. David would need to live in a town
that made sense for him and that was not an additional challenge. Knowing this,
they decided to move into Cooperstown as this was an area David was already
familiar with, and a community that was already familiar with him. Peter and
Kristen say that this was just a part of parenthood
for them, and just like any other parent, they wanted to give their child the
best opportunities available.
When asked if there was anything he wished people outside the community
knew about autism, Peter says that “Autism is not a lack of capability but a
different way of navigating the world.”
Leaning
on Community
Debra goes on to tell us that Matthew was diagnosed at the age of four.
“We had noticed a few signifiers before we really knew what that meant. A woman
we went to church with
at the time had two grandchildren with autism and was able to share some
information that led us to take Matthew to get some testing done though the
Kelberman Center.” Once Matthew was diagnosed, they were then able to enroll
him in the Upstate Cerebral Palsy Center’s preschool class for children with
special needs. Debra knows just how hard it can be to seek out help when you
are used to handling so much on your own. To parents of newly diagnosed children,
or to those who are still navigating the process, Debra has this to share,
“Even though you might be nervous about what the future has to hold, you need
to know that you are not going through this alone. Autism is a lot more common
that you might think, there are people to reach out too, there is a community,
and it gets so much easier once you have that support in place.”
Advocating for Resources
“We first received a diagnosis for my son about 15 years ago when he was
three years old. At the time, we didn’t know what the spectrum was as it
pertained to autism. There is so much more research and information now than there
was back then,” shares NYCM Fitness Coordinator/Trainer, Karen Fagan about her
connection to the autism community.
“We struggled early on due to a lack of resources. Essentially, we were
told that there was nothing that could be done for my son and my concerns were
written off as behavioral issues.” Karen explains. This interaction with her
son’s doctors is
what drove the family into advocacy for support and awareness. Karen continued
fighting to find support for her son and eventually met with a local physician
named Dr. Lopez, who later was able to come to their school district
and help create
resources for children with autism like her son.
Because autism exists on a spectrum, there is no “one size fits all”.
Although it can often come from hearts being in the right place, many people
may not realize that the help they are offering is in fact perpetuating the
intolerance of autistic behavior rather than acceptance. For example, Karen shared that
her son often likes to wear the same outfit because it is comfortable and
familiar to him. Karen had been contacted in the past out of concern by someone
looking to offer financial assistance
to help them afford new clothes. Unbeknownst to them, Karen had actually
purchased ten sets of the same outfit for her son, and washed them
through the week so that he could wear what he wanted to.
Karen points out that oftentimes the biggest hurdles with autism aren’t
something you can necessarily see. People with autism can find a disconnect
when it comes to the more social aspects
of life. For example, noise pollution
can be overwhelming and many may prefer to stay away from large groups of
unorganized people. For Karen’s son, this means eating lunch in another room
with a teacher or in the library rather than in a crowded cafeteria.
“The truth is that many individuals with autism are fully capable of
living independently,” Karen explained. “Autism is not a cookie-cutter
condition, it looks different on everyone. My son is extremely bright, a
straight-A-student who will be graduating at the top of his class this year.
Having autism doesn’t mean that you can’t be successful,
it might just mean finding another way.”
Inspiring Kindness
“My goal has always been to give Sam as much support
as possible and to take as much consideration around his needs as possible.
I’ve never looked at my son any differently because he’s just that - my son,” shared
Matt Johnson of our IT Infrastructure
Team. Matt tells us that Sam was diagnosed at the age of three and will be
turning 21 within the next few weeks.
“Something that no one really prepares you for when you have a child
with high-functioning autism is that as they get older, there are less and less
resources available and support available. Although Sam is a talented artist
who has completed an art program through the local BOCES Program, the job opportunities
available to him are somewhat limited due to the lack of autism awareness and
acceptance in the workforce.
Sam attended counseling through The Kelberman
Center, which is where they were first introduced
to the various Autism Awareness walks and events. “It was such a cool
opportunity to get involved because it was something we could do not only for
our health, but also to support my son and the community.” Since then, Matt and
his family have
participated in several different organizations' events in an effort to help
spread awareness and provide a connection to the community for Sam. It was
important to Matt that Sam had a community as he doesn’t always seek out social
interaction for himself. For many years
while the program was still running,
they would participate in the Dragon Dates Program, at SUNY Oneonta, where a
group of students with different abilities are able to come together and
interact with each other in a judgement free space.
When asked if there was anything Matt wished other people knew or would
consider about autism he had this to share, “This doesn’t just pertain to
autism, but I do think this is an opportunity to remind each other to approach
one another with kindness.
You truly never know what someone is going through. If we can all try to
understand each other and respect the different perspectives that we each bring
to the table, the world would be a much more welcoming place. We all have our
own unique value
to share.”
How You Can Get Involved
Team NYCM will be taking part in the Walk for Autism,
which is a virtual event taking place throughout the month of April.
This event was created in an effort to support and inspire a kinder, more
inclusive world for those with autism. For more information on how you can
participate, check out this link.
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