DIAGNOSIS AT BIRTH: FAMILY EXPERIENCE continued...
needed parental consent to give Jack
various tests. John wanted to be the first
to tell me about the Down syndrome and
he did. We were not expecting it.
That afternoon, a doctor from ge-
netics, who said all the right things in the
right way, explained things to us — he
said this is what he sees — he explained
Jack’s eyes, single palmar crease, and
sandal toe. We asked questions. He
shared what health conditions to look
for, like heart defects. He explained
there are three kinds of Down syndrome
— we had no idea — general trisomy 21
(nondisjunction), translocation, and mo-
saicism. Jack has general trisomy 21.
While in the hospital, a neurosur-
geon took Jack for an MRI. He was only
on oxygen for one day. We left the hos-
pital in the same amount of time when
we had our first baby.
Did the hospital provide you
with information about Down syn-
drome?
Amy: We did not have experiences
with Down syndrome. We both grew up
in small towns. If a kid had it, you just
never saw him/her.
John is the worrier in our rela-
tionship — he did a lot of research
and made many calls. The staff did of-
fer me a choice of going to a different
floor within the hospital so I wasn’t with
other moms who had babies without
conditions, but I stayed where I was.
We received information from the hos-
pital about the Down Syndrome Parents
Group of Western New York. Because of
HIPPA restrictions, the group could not
contact us and we contacted them.
I worried more about different
health aspects — will he be at the hos-
pital all the time, I was worried that he
would not be a well kid — I was com-
pletely wrong.
What was it like after the hos-
pital?
Amy: We had seven follow up ap-
pointments lined up right away, from a
heart doctor and a hearing test, to genet-
ics to go over results, and more blood
work. Children’s Hospital was wonder-
ful. Over the course of a few months, we
learned that Jack had two heart defects,
46 WNY Family April 2019
but did not need surgery.
Jack did not grow fast, so that was a
concern. We saw the same genetics doc-
tor again. John and I asked things like,
‘What’s next, what do we do — he said
take your boy home and love him.’ Wow,
that IS what we needed to hear! He even
asked us, ‘Do you love the Sabres — we
said yes — he said, Jack will love the
Sabres, too.’
We were very lucky. I have to say
that other stories that we know were not
so positive.
Growing up, what worked well
for Jack and for you and your hus-
band as parents?
Amy: We started Early Intervention
(EI). Jack was getting physical and oc-
cupational therapies at three months —
we learned the earlier, the better. He had
a hard time holding up his head — we
really credit EI for so much. He was get-
ting special education at six months.
Jack started attending Bornhava, an
early childhood program, at six months
and finished there at age five. From
there, John and I enrolled Jack into our
local school system.
What’s life like now for Jack, a
newly turned teenager? What type
of relationship do your children
have with each other?
Amy: When he started kindergar-
ten, I asked Jack’s teacher if I should do
some type of presentation about him and
she told me, ‘No, Jack will show kids
who he is.’ Jack is fully integrated in
school and activities. He is in 6th grade
at East Middle School in West Seneca.
His sister, Emma, goes to the same
school. Jack is a Boy Scout earning
many badges. His friends are his friends.
Emma and Jack have a typical sister/
brother relationship — they bug each
other! She just sees him as her brother.
I have to remind her sometimes that he
has Down syndrome.
What advice do you have for par-
ents who have children with Down
syndrome or other disabilities?
Amy: Find parents and others in the
same situation to talk to — it makes a
difference. I found that it helped, espe-
cially at Bornhava and with the Down
Syndrome Parents Group of Western
New York. It was devastating when we
got the Down syndrome diagnosis be-
cause your life is completely changed,
but I’ve met the most wonderful people
through the group. You can also find or-
ganizations that support kids similar to
yours, like Special Olympics, SABAH
and other sports programs who assist
kids with disabilities. We also person-
ally find that integration has been very
important to our family.
We have found that it is best to treat
people with Down syndrome like every-
one else. Keep expectations high and the
more they will accomplish. We treat our
kids equally.
Fast forward to present time and you
can find the Monson family very busy.
Amy works part-time at Bornhava and is
the co-president of the Down Syndrome
Parents Group of WNY (DSPGWNY),
actively providing support to fellow
families, coordinating speakers, and
planning their family events and fund-
raisers, along with educating the com-
munity and creating awareness of Down
syndrome. When John is not working as
a safety professional and volunteer fire
chief, he participates in DSPGWNY ac-
tivities, assists Jack’s Boy Scouts troop
and spends time coaching Jack’s base-
ball team. Emma is in tenth grade, and
enjoys playing volleyball. The family
loves to travel together.
And, just like his parents — and his
sister — Jack loves the Sabres!
Nicole Forgione is the assistant direc-
tor of marketing communications for
People Inc., a multispecialty non-profit
health and human services agency, pro-
viding programs and services to more
than 12,500 people with developmental
disabilities, special needs, their families
and older adults throughout Western
New York and the Greater Rochester
region. Since 1970, the agency has as-
sisted people to achieve greater degrees
of independence and productivity. For-
gione is an active member of Senior
Wishes and the public relations commit-
tee for the Developmental Disabilities
Alliance of Western New York.