We are the Crowe family from Canberra; Vanessa, Richard, Sophie
(22) and Angus (19).
Angus
was diagnosed with PWS at the tender age of 8 weeks of
age. Even after 19 years I can still remember receiving the phone call
from our Paediatrician telling me our beautiful baby boy has PWS. I was
looking at my darling, innocent son the whole time I was on the
phone and I wondered what the future held
for him; would he have friends? Would he learn to drive? The
phone call brought devastating news for us and the information I was
given over the phone by a previous PWS NSW spokesperson was not so great,
in fact was so upsetting and heartbreaking, I
decided at that moment I would do anything to give him the best chance
ever.
After visiting our Paediatrician the following day, the next stop
was to visit the ACT Genetics Service. We met a wonderful geneticist,
Dr Anne Turner, who gave us the best advice
ever which even today I am so grateful for. Through our tears, she told
us to take one day at a time and not to keep looking too far in to the
future otherwise we would miss Angus’ milestones; she was so right. Our
first PWS NSW (New South Wales) meeting was on our 5th wedding
anniversary when Angus was 3 months old.
The
piece of advice I would give a newly diagnosed family is
(I can’t stress enough how important therapy) speech, physio and
occupational therapy. I did everything that was asked. Yes, it was hard
work and was a constant reminder that we had a child with a disability
but I truly believe Angus is the man he is today
as a result of all the support he received as a baby and young child.
Our mantra for Angus is “Near enough is not good enough”. Even when
Angus was still in the NICU after being born he started speech and
physiotherapy. He then had regular therapy from 8
weeks of age right up until he started school and then some. Angus
attended therapy sometimes up to 3 times a week. I remember one year
clocking up 50,000kms in my car between therapy and medical
appointments.
Angus is very active in Special Olympics. He attends
swimming and plays basketball, football and cricket which is also a
wonderful way of continuing to get physical therapy in to this life. I highly
recommend Special Olympics. Angus also played mainstream basketball -
it was such a thrill to see him play cricket and
football; it meant he could now really be like his childhood heroes of
sport.
Growing
up, Angus was amazing. His long-term memory used to fascinate
people. For example, he would ask friends what all the keys on their
keyring would be used for and then each time he would see them he would
go through each key and tell them what it was. His love of
sport was his passport to the world. He still
loves to find out what team you follow and will recall games and scores
especially games against his beloved Raiders and St George or Sydney
Swans. He has brightened our lives. We now follow cricket, tennis and
darts and all types of footy; male and female
teams. He is well known in Canberra and we can’t go anywhere without
someone recognising him.
We
were fortunate to be able to send Angus to Turner Primary
here in Canberra. This is a School that runs a special education program
alongside a mainstream program. We loved the fact that Angus had his own
classroom with 6-8 other students to get the intense schooling he
needed but also had the opportunity to be part of a
mainstream school where acceptance of students with a disability was
just the norm.
He then went on to a special education high school until Year 9 when it was suggested he attend a mainstream high school from Years 10
to 12. This filled us with fear as we now had
to deal with a canteen!!! The support we had at Marist College,
Canberra was brilliant. Yes, we had daily challenges and yes, Angus’
tiredness really made it hard for him not to be grumpy during the day,
but we were so grateful that he was able to have the
opportunity of being part of this community which focuses on social
justice. It was a community that not only accepted him fully but also
challenged him beyond our wildest dreams. Needless to say, we were so
proud of him when he completed the Year 10 Outward
Bound Program and especially when he graduated Year 12.
PWS
is not only devastating for the individual but also for
their families – there is no way around it. They are some of the most
discriminated people in the world – unless you are immediate family or
specialise in PWS, no one understands PWS as much as they would like to say they
do. You are your son or daughter's advocate at all times.
I still check
in regularly to the PWS NSW and PWS Australia websites and follow the
PWS USA Facebook page. They all keep me up to date with what is happening in
the world of PWS. I still have times where getting out of bed each day
can be a challenge but Angus has brought love
and light to our whole family in ways we would never have thought
possible. The promise we made to Angus when he was a baby still exists
today. We recently bought a workwear and promotional business so Angus
has a meaningful and structured working environment.
Angus embroiders caps and weeds vinyl for pressing (where
you peel the excess vinyl away from a printed logo and then work on the
finer details of the logo with a vinyl picker to ensure it is
ready to be pressed on to garments) and each day he is
learning new skills on how to work in an office. During that phone call
19 years ago, I couldn’t imagine Angus learning to drive but Angus
passed his Learners Licence and is now driving me to and from
work. Getting his full licence will be a challenge but in the meantime, he is
driving. We have come a long way on this journey and we still have a
long way to go. We are currently looking into long term supported
accommodation for Angus.
