year and what we’re hearing from her on
a regular basis is it’s my grad year
it’s my grand year she was determined to
buy herself a grad ring so she saved her
money made the purchase and then ex off
on the calendar the six week mark when
the ring was supposed to be delivered
between week six and seven we heard
things like where’s my ring when is it
coming why isn’t it here did they lose
it did you check the mail finally at
week seven it arrived I don’t know what
we would have done if it had taken
longer than seven weeks she bought her
grad dress
we tried on about 18 of them every dress
was the perfect dress she’s now trying
to decide who to go to the banquet with
will she go with the boy or a boy she’s
consumed with all things graduation of
course along with graduation we’re
experiencing moments of teenage
rebellion I see some of you have
teenagers instead of typical teenage
rebellion such as staying out late
drinking talking back my daughter does
things like take her shoes and socks off
go stand in the snow for ten minutes
just to see what it feels like knowing
full well that it would call it caused
us great stress but this is her level of
rebellion I say her level because she’s
a person with special needs being a
person with special needs can be
exhausting being the parent of a child
with special needs can be exhausting in
its own way
I wear the hats of advocate ambassador
educator and caregiver because Maddie’s
been excluded through things in her life
I now see the world through the lens of
inclusion for those of you that may have
experienced the natural progression of
child rearing your children go to school
get a job maybe get married possibly
have a family
there have been choices and options
along the way for my daughter those
choices and options haven’t always been
a given because she’s been limited by
her labels instead of included by her
abilities when teenagers go to get their
driver’s license
there’s a gradual system of learning
first they take a written test and they
get their L and they proudly display
that on the back of the car and that
signifies to the rest of us that they’re
learning and they need lots of practice
and they have they’re under adult
supervision for a year then after a year
they take another test and they get
their IDI at this point they can take a
passenger and a little less supervision
it’s not for another two years until
they become a full fledged unrestricted
driver
this gradual system of support is in
every drivers best interest we want safe
drivers on our roads
this system is inclusive it’s supportive
it encourages practice to become
proficient this is the type of system
that my daughter needs to learn new
things in order to truly understand what
inclusion meant I had to first
understand what its opposite exclusion
meant I wondered why are people excluded
what it came up with is that it’s people
who are outside of the norm who are
excluded so then I had to figure out
what does normal mean as far as I can
tell normal is anything that is typical
usual most common normal makes us feel
comfortable in our communities we expect
certain things to be normal and when
they’re not
we either shy away from them because of
discomfort or we learn about them in
order to feel comfortable again we
always have these two
choices to leave or to learn to exclude
or to include to the extent that my
daughter will be included in society she
will be a contributing member of that
society just because she can’t do things
independently doesn’t mean she won’t be
a valuable member of society I would
argue that contribution can mean more
than just money what about the service a
person can provide in one of my favorite
articles on inclusion entitled the
golden rule the author’s suggests that
inclusive communities promote growth
independence and interactions with peers
my daughter could be a dog walker a vet
assistant a care aide or a recreation
leader when you take the time to ask her
what she’d like to do after graduation
she will tell you her three areas of
interest
dogs old people and kids if she wants to
give back to the people or dogs that
bring her happiness she should be able
to do so we have never put limits on
what she could be able to do she may
even surprise us by doing something we
in fact my daughter never knew she was a
person with special needs until she
learned that in school up until high
school she just knew that some things
were frustrating and difficult for her
and she needed help but we explained
that her brain works a little bit
differently than other people and that’s
okay diversity is a good thing we want
differences in our world because it
makes the world a more interesting place
sadly when she went to high school she
started referring to herself as a
resource kid a special-needs kid one
night at dinner during her first week of
high school she turned to me and she
asked mom that’s a resource kid and why
I’m in the resource room it kind of
sucked a lot of joy than the whole idea
of going to high school for her
she was baffled by the idea of why she
was in the resource room when she sees
all people as people and she didn’t
understand why she was separated from
her peers or her equals thankfully
together with her school team we work
together to come up with a plan that was
person centered around Maddie’s
strengths and we were able to tap into
all the options of resources at the
school in order to make high school a
meaningful experience I actually see
Maddie’s view of the world where
everyone is equal in her eyes as one of
her ways of contributing to society she
will give love kindness caring and
compassion to everyone without judgment
she sees everyone as an equal she will
ask for anybody’s help at the grocery
store if she needs help wing her bananas
she will ask you unfortunately while
she’s getting help wing those bananas
sometimes a long line will form behind
her and people start to become impatient
because he can’t see her disability last
month Maddie and I went skiing together
she decided to take her own route down
the mountain so this of course had me
skiing ahead of her instead of behind
her as I usually do and her route had
her going through piles and piles of
powder which she hates so she did a
couple of turns and she was down on her
but I’m farther down the hill so I take
off my skis and start trekking up and as
she’s sitting there she just starts
calling for help from whoever comes by
the next person down the mountain is
going to be the person to help her she
doesn’t discriminate and why should she
if it was your child who needed help and
I was the next person down the mountain
wouldn’t you want or even expect me to
help them
does the disability even matter at what
point do we decide to
turn away from someone who’s asking for
our help the disabilities shouldn’t
matter what if we all had to wear labels
around our necks
to show to the world what our challenges
are if my daughter had to wear labels
osteopenia scoliosis and for the cherry
on top anxiety my daughter doesn’t wear
labels on her neck she wears her heart
on her sleeve
she is whole hearted she is the most
non-judgmental loving caring person I
know her smile lights a room and if
you’ve ever walked along the better
trail you’ve probably heard her say
hello especially if you have a dog
walking with you she and because she’s
she is she’s the better trail dog
ambassador I actually think when she
says oh that’s a cute dog what she
actually means is that’s a dog I could
love I’ll never forget the day we were
at Sunny Hill waiting for one of
Maddie’s diagnoses my palms were
sweating my stomach was doing flips and
when the doctor entered the room the
smell of antibacterial soap wafted
through the air he sat down and he told
us that Maddie has autism of the many
things he said that day that were tough
to hear one of the things that resonated
with me and has proven to be true is the
fact that Maddie will learn about the
social world through hard knocks nobody
wants to hear that their child that hard
knocks are inevitable for their child
but he was right Maddie has learned
about the social world through
until nudging from her support network
to hard knocks from her schoolmates we
as her support network have learned
patience oh so much patience and
perseverance her schoolmates have
learned to accept and include people
that are different than them the social
world is where we need to be careful
that Maddie’s not taken advantage of
because she finds navigating social cues
and social norms a challenge we have to
put supports in place to make sure that
she’s safe and yet it feels freedom it’s
a delicate balance to ensure that she
feels freedom without the constraints of
too many protections like any teenager
she wants to go be free from a parent or
support person to go for tea with a
friend so what we do is she and her
friend leave our house and they walk to
the coffee shop their route and then we
walk to the coffee shop our route we
meet there we check in we talked to the
staff let me say hey Maddie Sarah she’s
with their French they don’t have some
tea and then we go off and we do
something really exciting like grocery
shopping and then we come back we check
in Maddy goes her route home we go our
route home this is the fine balance of a
village raising a child it takes some
extra work we work with our community to
to put those supports in place so that
Maddy feels independence it takes some
extra effort but the smile on her face
from having those social interactions
makes it worth it she belongs
she is included Maddy is ultimately
trusting and naive which makes her
vulnerable yet it is her vulnerability
that makes her beautiful as brené Brown
said in her TED talk on vulnerability
vulnerability is the willingness to do
something when there are no guarantees
he does this on a daily basis she is the
first say hello on the Vetter trail
she’s the first to say I love you at
random points during the day and she’s
the first to say I don’t understand
having a community that supports and
understands her gives her courage to
take risks to do the things that she
needs to do and to learn the things that
she needs to learn often when I’m out
with Maddie I noticed that people with
obvious disabilities are often looked
past as if they were invisible
and I wonder why inside in truth we are
all just one accident one chromosome or
one unfortunate event away from being a
person with special needs ourselves no
one wants to be invisible there is
nothing special about the need to be
seen as human and worthy of caring we
are pretty considered of the needs of
others in our community we have
designated parking for pute for new
parents veterans and people with
disabilities we have points of access
into buildings ramps and elevators and
once inside we have designated seating
but these are for the disabilities that
are easy to see for people with an
invisible disability there are points of
access into social situations as I know
all too well
there is no designated access for
someone like Maddie to enter into a
regardless of what intolerance is going
on in the rest of the world we have
control over the open mindedness we
teach our children the acceptance we
show in our communities and the
inclusive society we build as a result
everything we do has impact on others
what if we all acted like young children
where everyone was a friend and an equal
we wouldn’t even have to try to be an
inclusive community
it would just be natural instinct my
oldest daughter taught me this when she
was in grade two she came home from
school one day and she said mom guess
what of course being the very attentive
parent I responded with what she said
did you know that jasmine has brown skin
being the attentive parent again I said
well how did you discover that she said
well today we were doing art they were
sitting together we were doing a
self-portrait and I was a little bit
ahead so I finished with my crayon so I
slid it over to Jasmine I said here you
go and she looked at me and she said
what are you doing I said it’s crayon
for you for your portrait she said
that’s not the color I need I need a
brown crayon I have brown skin I never
knew she had brown skin all I ever saw
was a person wouldn’t it be great if all we ever saw was the person