Carly’s Voice (49 page)

Q: Jeff @CarlysVoice
How do you feel about gluten-free, dairy-free, casein-free and wheat-free diets? what
do you eat?
A:
I tried it when I was younger. It never made me feel different. If it works 4 some
people that is great. but I haven’t spoken to many that actually say its helps and
not alot of kids are still on it that i no of that are my age.

Q: Jeff @CarlysVoice
What would you tell siblings of a Autistic kid on how to better deal with Autism?
A:
That we don’t mean to steal the attention form them and we are sorry when we brake
things and we do care for them.

Q: AnthonyH @CarlysVoice
Would you recommend (or discourage) any devices/apps ideal for kids with autism. Eg
iPod Touch or Nintendo DS?
A:
I like using proloquo2go on my ipod it helps me communicate when I don’t have a computer
around and look like all the other kids with it.

Q: ferrista @CarlysVoice
I am a teacher for kids like you. If you were my student what one thing would you
like me to know?
A:
That we are all teachable you just need to think out side of the box. Never give
up.

Q: jubilee @CarlysVoice
if you didn’t live at home what technology would you want in your apartment?
A:
I would need my Ipod my laptop and a free chip vending machine. I would really like
a t.v that I could hook my laptop into so people dont look over my shoulder to see
what I am saying/spelling. I like to listen to t.v with wireless headphones sometimes.
They help me block out the other overwhelming sounds and can helps me focus.

Q: Healher @CarlysVoice
When you can’t control yourself even when you know it’s wrong, what is the best support
a person can give you when this happens?

A:
I know people want me 2 say they can help control some of our behaviors but alot
of times. Some of our behaviors are to stop other behaviors. I was hitting my hands
and the doctors thought it was self aggressive behavior. In fact I was hitting my
hands to stop another behavior. I could not walk by paper or bags with out feeling
the need 2 rip or shred them. So I would hit my hands to stop it. Sometimes when people
interject they end up making things worse. But sometimes it can be great help.

Q: GreenDilly @CarlysVoice
my younger brother has autism, he sometimes gets very frustrated and hits himself,
what is the best way to calm him down?
A:
First of all we hit ourself for many reasons. I hit my self 2 stop me from doing
what I no is wrong. So if that is the case don’t stop it. Best way to help is to read
us when we our getting frustrated and try to calm us down be for we get to that point.

Carly’s input to her Grade 10 Individualized Education Plan, Fall 2011

When referring to raising Carly, we have often evoked the African proverb that it
takes a village to raise a child. Though in our version, we elevate the
village
to an
army
. Without the following people in our lives, my family and I would still live under
a cloud of darkness.

We would not have gotten to really know our daughter Carly if not for Barb Nash-Fenton
and Howard Dalal. This magical duo saw Carly’s potential—even before she did—and never
gave up guiding her forward. They have done more for our family than we could have
ever asked or ever done for ourselves.

While there are numerous medical professionals to whom we are indebted, the commitment
and wisdom of Dr. Wendy Roberts, Carly’s “Cool Doctor,” has been a beacon for us.
We also feel enormous gratitude to Dr. Morton Goldbach, Dr. Diane Superina, and Dr.
Rose Geist for helping us through the most chaotic years and working tirelessly to
improve the quality of Carly’s life. The team
of doctors, specialists, and nurses at the Hospital for Sick Children in Toronto are
too many to mention by name, too important to ever forget. The patience and counsel
of Dr. Sharon Marcovitch helped guide us in planning Carly’s education and understanding
the intellectual milestones Carly has achieved.

Years of excellent, scientifically backed therapy are at the root of helping Carly
thrive. From the outstanding programming and dedication of the team at the Behaviour
Institute led by Dr. Nicole Walton-Allen, Donna Chenney, and Kendra Gayadeen and Audrey
Meisner at New Haven Learning Center, to the ABA teams that preceded them led by Elizabeth
Benedetto-Nasho and Shayna Guenther, these people have taught Carly every skill she
possesses. Autism affects the ability to learn, but not necessarily a person’s innate
intelligence, and through the creativity, focus, and discipline of these wonderful
ABA providers and therapists, Carly has shown us that her disability needn’t be her
prison.

While many therapists and support workers joined us for a period of time before moving
on to other callings, some are a part of our life years later: Joanne Alexander, Dina
Kalales, Melissa Perri, Colin Campbell, and, more recently, Katie Czich and Sheila
Duggin (whose first “teaching position” was to work with Carly at school and which
required her to do things never taught in teachers’ college). Carly’s team in recent
years has expanded to include Barb Muskat, who provides Carly with a confidante and
counselor. Ashleigh Eccles, Carly’s occupational therapist, has helped Carly reach
personal goals that many of us take for granted and, on occasion, achieve an inner
calm many of us would love to find. Running our crazy household would have been impossible
without the dedicated support of Shiela, our nanny of seven years.

Thank you to Paul McCormack, Steve Noonan, and Brenda Scott for your never-ending
support to our family. You have always had our back.

We have been fortunate to have family in our lives—in particular, Tammy’s sister Carol;
a better aunt does not exist. But friends
have frequently been an extension of our family, and I don’t know where we would be
without Mary Eberts, a legal champion for the cause of families living with autism,
and a loyal friend. David Corbett and Jonathan Strug also stood by us in court when
that was the only forum available to ensure our own voices were heard. Chip and Ruthie
Bailey, whose door is always open to us, and who opened doors
for
us when we sought out Ellen to read Carly’s bat mitzvah speech. Similarly, those
generous of time and patience who supported us and tried to understand the incomprehensible
nature of our life include the Collies, Kibels, Seldons, Shepherds, Smiths, and Wellses,
and friends from our youth who endured the test of time: Brian Saber, Randi Stern,
and Karen Willsky.