it’s a story where grace and mercy and
forgiveness hasn’t had an opportunity to
be a soothing balm on the individual’s
heart it’s a place for the lack of
empathy and language really matters
really impacts that person’s journey I’m
a mother also known as a birth giver of
three children 18 16 and 13 – diagnosed
on the autism spectrum one undiagnosed
but self identifying as a self
identifying parent on the autism
spectrum as well I’m here to talk to you
about this journey of language and
empathy and how that impacts the parents
and the families as a parent who goes
through this journey and many parents
that I’ve walked with in the three
provinces I’ve lived in in Canada
working in three educational systems
I’ve homeschooled I’ve ein schooled I’ve
private schooled I’ve done distributed
learning and I’ve done mainstream
education with my children and the
impact of trying to navigate through
that husband quite significant often
what we find when I’m working with
parents as a counselor and that our
parents and our families are in fight
flight freeze mode and it causes us to
make incredible decisions and decisions
like one day we going through a show
home with my children when they were
very little and I was quite pregnant and
my one toddler needed to go to the
bathroom when I sought permission to go
into this washroom and this beautiful
million dollar show home that actually
was worth a million dollars and my child
did their business and I cleaned them up
and pushed them off to the side flush
the toilet and lo and behold this toilet
decides it’s going to start to crest and
I’m looking and panicking and like oh my
goodness what do I do there’s no plunger
my fight flight freeze ripped off my
rings thrusted my hand in that toilet
and I start plunging and I was like oh
my god
and I’m praying over this toilet and I’m
thinking this is going to be the most
blessed toilet anybody has ever owned
and it starts to receive a like thank
goodness and I clean myself up when I
scurry us out of that home as fast as I
can I’m like never to return those are
the kind of crazy decisions when we’re
in fight flight freeze and those
decisions are based on these knee-jerk
reactions sometimes because there’s a
gap that’s happening for us because
we’re in the middle of these chaotic
situations on an ongoing basis and
there’s pain that’s involved in that and
the pain comes at a time and a place
that we’re not expecting it we’re
seeking help for our children we’re
seeking a diagnosis and when we go in to
the medical office into the
psychologists office and that
psychologist sets us down after all our
weeks and months of assessments and has
us that beautiful binder and says your
child has autism these are the tools
you’re going to need to do the journey
at no point in time are we told in that
moment will be thrusted into a grieving
cycle that grieving cycle is deep and
it’s ongoing and it’s a deep experience
of loss that we will encounter again and
again and we will interface with shock
in that shock will bring us anger
sometimes sometimes that shock will
cause depression it’ll cause addictions
and it causes anxiety what we need to be
told when we’re given the diagnosis is
that you will be experiencing the
grieving cycle you will experience
anxiety you’ll probably have both the
depression and depending on the
neurodiversity of your child you may end
up with post-traumatic stress disorder
many parents will go in to protest
denying the diagnosis some of us will
purvey saan the diagnosis and learn as
much as we can to other try to deny it
or become as best of an advocate as we
can for that parent and anger sets in
and social isolation sets in and we move
to a place of disorganization because
there’s
no clear path on how to do this journey
with autism or autism with ADHD or
autism with OCD or whatever the comorbid
x’ may be and we get disorganized and
our patterns start to fall apart we’re
not exercising we’re not able to find
time to groom ourselves properly have
the simple things like a shower every
day and we continue to to proceed
forward to a place where we get into a
routine and we’re starting to understand
what’s to be expected of us in this new
role of advocacy as we parent it’s a
very very challenging role we start
organizing ourselves again and we’re
like I got it I get this we can do this
and we get the doctor’s appointment so
we’re getting the specialists and we’re
getting what it means to go into the
system of the schools and advocate and
we might start exercising when I start
joining some social groups right now in
the autism world Facebook is probably
one of the largest social groups for
support that we’re seeing right now and
there’s a concern about that because we
don’t have proper help in there it’s
parents helping parents which is
beautiful but we have a crisis in those
parents and we think it’s true that
organization we’re going towards
recovery
like in any grieving cycle we think
there’s recovery we’re going to do this
and that road is wavy but we don’t
really see where it’s going to end and
we don’t even know if it’s going to end
and then we see a regression in our
child and we go wow I’m here again I’m
not recovering what do I do
depression sets and anxiety sets and
further sometimes and some marriages
divorce transpires and then we see a
secondary loss that’s going to happen so
if we understand the typical grieving
cycle that we interface with for example
in the loss of death or or divorce even
for that matter we know it’s a cycle and
there’s a leap off but doing this
there’s a cycle there’s a leap off and
there’s a digression and then we do it
again and we keep doing it again then
there’s that secondary loss so I’m going
to talk about today that secondary loss
impacts the primary care
the one who’s taking the child to the
medical appointments going into the IEP
meetings translating information from
the doctors to the other parent or to
the other family members that person
starts to get lost their identity starts
going sometimes and if not almost always
many of the parents that are doing this
role experience a financial loss they
may have gone to university got educated
and are working full time prior to to
the diagnosis and the challenges they’re
interfacing suddenly finding themself
pulling out of work and working halftime
and then there’s many of us that have to
pull out of the work workforce
completely and it impacts the family
unit and then there’s the identity issue
any parent you ask about this will
confess to you I’m more of an advocate
than I am a mom and when I try to be mom
I’m so tired I’m more of an advocate
than I am a friend a wife a lover a
daughter and it’s a very confusing place
to be and it’s a very frightening place
to be and it’s a vulnerable place to be
because you get lost in the system of
confusion while you’re passionately
seeking how to care for your child and
the loss of an loss of dreams are
incurred those loss of Dreams come in a
variety of different packages the
biggest one is going will my child be
able to go out and live independently
will my child be able to achieve the
vision I hoped for when I was carrying
my child in my womb either loss of
dreams are again the family unit
breakdown or simple things like going on
a holiday and not being able to do that
because your child cannot tolerate the
transition that’s about to take place
and that transition actually causes
trauma some people might see it as
disobedience but it’s actually trauma on
the mind and therefore the spirit of the
child and so all these things start
getting rearranged
and changed for how life looks and that
causes a loss of faith for many a lot of
faith in God sometimes a loss of faith
in the system
I lost the faith in how to proceed
forward and that tumbles very quickly
into a loss of confidence and you see
depression increase here and you see
anxiety increase here and you see health
issues increase here and you see
addictions often increase here and
socialization and then the security gets
fractured it could be a marital security
a complete family breakdown perhaps
bankruptcy in the family because the
costs and the burden of supports to help
that child succeed far exceeds the
ability to pay for what’s coming forward
and it harms the family the sense of
security and self going out into the
public and engaging thoughtfully in
relationships the sense of security as a
whole gets impacted greatly and it gets
impacted greatly because the support
system start failing for many of us the
immediate family doesn’t get the
diagnosis they want to reject it because
it’s not my genes or you’re not
parenting well enough you don’t have
strong enough boundaries because they
don’t understand the neurology of the
child and it looks like from the outside
that you’re being really relaxed and how
your you’re dressing your child and in
training them in the way they should go
but in essence the parent is trying to
to gently move them along so it’s
further trauma doesn’t happen and they
get isolated from family members and
friends they don’t really understand
what’s going on and don’t know how to
walk alongside you and say hey you
haven’t come out for a few weeks for
lunch or tea where are you are you okay
those kind of things
start falling off the edge and you start
walking alone and it becomes a long
journey alone working with your child
until you find someone who’s doing the
same journey and gets it and then
there’s this instant connection those
are the blessings in disguise
and so you might be curious what does
this have to do with with you as
educators perhaps I’m going to focus in
on what we call I like to call the
elephant in the room it’s the IEP
meetings and us getting ready for our
IEP meetings that’s one of the most
challenging journeys for us as parents
because guarantee two to three times a
year when that IEP meeting occurs that
parent has to interface with the initial
trauma of the diagnosis that is a
trigger for the grieving cycle to start
again and so the parent is talking to
themselves this is a lot of self-talk we
do I’m fine don’t worry about and we all
know the word fine is a dangerous word
especially if you’re talking to your
wife fine you know come back later
and we’re getting ready and we continue
to progress towards that IEP meaning our
tables filled with medical history and
academic history because we’re putting
our case together to show John II can do
this but you can see that anxiety is
increasing tremendously and the weight
is coming down on that parent mostly
because that parents doing their journey
alone and they think they’re okay until
they walk in to meet you and on that day
of the IEP meeting you’re going to
receive a parent who might be aggressive
and have an outburst because they’re
broken I want to tell you today it’s not
about you that parent may break down and
cry and it’s not about you that parent
will chronically be late and it’s not
about you and you may get a parent who
just doesn’t show up and it’s not about
you
that’s your flag that families in crisis
and you need to reach out I think
there’s hope though I am convinced after
almost 20 years of working in the
educational system our teachers our
educators are our primary frontline
workers you are with our children to six
hours a day sometimes more and so I
believe through working in the
counseling area
being an advocate being a mediator and
being a parent who’s been doing this for
a very long time that a big key element
is how we set up our IEP meetings and
setting them up for success and so I
want to encourage you today in some
thoughts on how to tackle this with me I
want to encourage you to think and
imagine your meetings do you have a
rectangular table in your room and if
you do when the parent comes in or is
all the educators on one side and the
parent on one that’s a threatening
position for that parent to come in
because suddenly they’re alone there’s
no team there so if you have an educator
in that room who gets that parent have
that person sit beside that parent greet
that parent coming in support them have
some candy on the table Candy’s
brilliant in your meetings because it if
the parent is taking the candy or
anybody who’s anxious for that matter
this is a great anxiety tool candy or
gum gets the brain working right brain
left brain work and gets the body to
preoccupy itself and it settles down the
nervous system it’s beautiful house
tissue most of us are going to break
down at some point whether because we’re
so elated because Johnny wrote five
sentences or because again we’re hearing
he didn’t do well I have some water and
be ready to excuse yourself if the
parent struggling take it upon yourself
to say you know why I need a washroom
break and by that parent time to
reorganize themselves leave the room
and let that calm B for a moment so that
parent can come back in but most
importantly before you start any meeting
the million dollar question that you see
behind me I want to encourage you to ask
that parent are you ready to tackle this
with me because when you’re thinking
about where they’re at coming in they
know you’re with them and if both of you
discern it’s a bad day it’s a bad day
let’s postpone this meeting it’s okay to
do that and that might release some
pressure and build some bridges with
parent that you’re working with him so
as we go forward and we’re looking at
the point of inclusion is not just about
the children it’s about the whole family
you know it’s not a program it’s a
mindset it’s a social integration of how
we treat others as a whole and we need
to take the whole encompassing
experience together to ensure that we’re
meeting the needs of the child because
if the child’s winning the educators
winning the parents winning every single
time so today I’m asking you to step
forward and to be seen and ask yourself if not me then who and if not now when