As a child she was easily startled and
frightened of many things, especially some sounds.
Although obsessive, easily upset and over
stimulated, she was the happiest little child, full
of mischief and an overabundance of hugs and
kisses. Always emptying out the cupboards and
drawers, she was and still is a master at making a
mess but she has learned to clean up after
herself.. most of the time! Mindy has given such
joy to her family and friends along with the
headaches and although she is sometimes moody,
obsessive and at times hard to live with, she is my
greatest friend and dearest companion and has
taught me a lot about loving, giving and patience.
Mindy doesn't read or write but she can recognize
some words and loves to draw. Schooling was always
at a special school since the choice to attend a
regular school wasn't available when she was
younger. The positive behaviour models in a regular
setting would have been much better for her and it
is good that many children with disabilities now
have the opportunity for full inclusion. They are part of our
community and should be included in all aspects of
it.
Her biggest problems have been obsessions, skin
picking and tempers which were often the result of
her inability to communicate adequately. She used
hair pulling, pinching and biting to communicate
when young but soon learned more effective ways to
make herself understood. She made up her own signs
and gestures but a formal sign and symbol system
for communication would have done much to improve
her life. Again these were not available to us so
long ago. Children with cri du chat syndrome
usually have a reasonably good understanding of language
and can get very frustrated with their inability to
communicate effectively often leading to the
development of "challenging behaviours". Providing
them with other means of communication makes their
lives easier and gives them a good basis for
language development. As their speech improves they
gradually stop using the additional means of
communication. Mindy eventually learned some
Makaton signs and was a real wiz with Compic
symbols but rarely uses them now. She communicates
in 3-6 word sentences and so doesn't need to.
Mindy's health has not been perfect with many upper
respiratory infections, bronchitis, constant runny
nose, accidental falls and the occasional bout of
pneumonia but she escaped most other childhood
diseases and the frequent ear infections so common
to cri du chat syndrome. Constipation is an ongoing
problem as it is with the majority of those with
this syndrome. It has been very successfully
managed with diet for most of her life but now
requires the use of laxatives. Her eyesight is
mildly impaired requiring her to wear glasses
although she won't wear them all the time and she
has a very slight hearing impairment that hasn't
affected her noticeably.
Mindy (28) with her friend's puppy,
Biggles.
She loves animals and is very
gentle and compassionate.
TOP
Mindy is now a beautiful, loving, grown up young
woman, living in a group home called Helen
Schutt House in a bayside suburb of Melbourne,
Australia. She has lived away from home since she
was 19 years old. She is currently attending an
adult day centre where she continues her training
in living skills and and enjoys many social
activities. Her life is mostly a happy one and she enjoys a
valued and respected position within her home, community and
family.
Although she has a busy life away from home just like any
other adult, we both look
forward each week to Saturday when we spend the day
together and every other year when we go on holidays
together for a week. Mindy always comes home for a
few days for her favourite celebrations - Christmas and
Easter - she gets overexcited and it is exhausting but the enthusiasm with which she celebrates
it makes the whole exercise worthwhile.
Mindy at
home - Christmas 1999
When she was born and given such a dismal prognosis
for the future, no one ever expected her to live
this long or accomplish so much. We now know that
cri du chat syndrome is extremely variable and
delays in a child's development can range from
slight to very severe. No one can yet predict what
effect the loss of material from the short arm of chromosome
five will have on any particular child. We also know that children with cri du chat syndrome
do not generally die in infancy as was thought when
she was born, and, although we cannot predict how
long she will be with us, I expect and hope it will
be a long time. I cherish every day we have together.
Margarette Christie.
UPDATE
ON MINDY - March 2000
Mindy's hair, in common with that of
many
adults with cri du chat syndrome, is going grey quite early.
Her friends at her residential home encouraged her to have it
coloured. This is a great achievement for Mindy, who wouldn't
even go into a hair salon until she was 12 years old. Her
hairdresser of 12 years, Robyn, was almost in tears because
she had never thought Mindy would cope with the colouring
treatment. Mindy is very proud of the result.
Click on thumbnail to view photos
TOP
Update
June 2001
Mindy
continues to progress well. Late in 2000 we moved her to a
new adult day centre. The change in her has been astounding.
Change tends to stimulate development because it is
challenging and in this case very rewarding. Mindy loves her
new placement, the people are higher functioning than those
at her last day centre and so she is challenged daily to
improve her communication skills and behaviour. More is
expected of her and she is coping well with this. At her last
placement she was bored and had excuses every day not to go,
often getting upset or angry. Her new programs are more
interesting and she looks forward to going each day and comes
home talking with enthusiasm about what she has done during
the day.
Each
weekend when I spend the day with her, I notice new skills,
improved speech and a more mature attitude. At almost thirty
years of age I am thrilled to say she still has more to learn
and more to achieve.
Photos
taken May 2001
Mindy's 30th Birthday
In November
2001 Mindy reached 30 years of age.
We gave her a
large party which was shared with one of her housemates who
also turned 30 that same week. Below she is shown with her
Grandfather and Great-uncle.
Photos from
Mindy's most recent holiday in Queensland
Mindy is now almost 32 yrs old.
Her favourite holiday spot is the Gold Coast of Queensland.
We try to go there every two or three years and on each trip I notice
that she displays a greater maturity and awareness. She is more independent and
more skilled at negotiating new situations. She is quite the
seasoned air traveler now.
Below greeting Courtney at a meeting of
the Queensland families from our cri du chat support group.
Mindy now 32
years old at the
Melbourne Cri Du Chat Support Group
Family Day
November 2003
Mindy at the last
Melbourne meeting for Cri Du Chat
Support Group at the Melbourne Museum 2004
Update
April 2005
Mindy (33) with
her Riding For the Disabled horse, Sebastion.
Update September 2005
Mindy's latest accomplishment. Her local Riding for the
Disabled group had a demonstration ride. She has only been
going for 5 months and all who know her were impressed with
her successful completion of the 40 minute long riding display. She
was excited and confident and was so proud of herself, as
were we all. It has enhanced her self-esteem immeasurably.
Update December 2005
Mindy really enjoys Christmas and
she loves the water. We have always had some type of small
above ground pool for the residents to use to cool off in
during our long and sometimes hot summers here in Melbourne,
Australia. Finally, the management decided it was time to
get a permanent pool installed since all of the residents
derived so much pleasure from their pools. A new in-ground
fibreglass pool was to be installed in time for summer
2004/05 but due to problems with the builders, it wasn't
completed until very late in the summer when the season for
swimming was almost over. So, this summer is the first time
she has had a chance to really enjoy the water as much as
possible.
The day of the annual Christmas
party was hot and dry and as soon as Santa had been and
given gifts to all the residents and their young friends and
relatives, it was time to jump into the pool. Since it is a
fairly small pool, first the young children cooled off with
their parents (the brothers and sisters of the residents)
and then the residents hopped in for their long-awaited
turn.
Here are two photos taken at the
Christmas party including one of her standing next to
their new pool holding a beach ball she received from Santa
and one of her floating in the pool with the help of
the ball. Mindy can't swim alone but can float with
assistance and move around by kicking. Mindy
had weekly swimming lessons from a young age but without a pool at
home she didn't get enough practice to learn to swim.
Email Mindy's Mother
Margarette
