If you know my family,
we are a mom, a dad, 4 children and 3 dogs. 3 of our children have
special needs (neurodivergant) – 2 autistic and one who is
globally developmentally delayed. Our oldest daughter is
neurotypical. So trust me when I say, we have adjusted to life in a
unique way.
I work in a small
northern community (population around 1300) as a pastor of a
beautiful group of people. The main language here is French, we
are English. 2 of our children go to a school each day that is 67
km's away. That is where the English high school is.
Constant advocacy for
our children is a must. We communicate with the school on a daily
basis through “communication booklets” If warranted, the school
will call us to let us know something out of the ordinary has
happened. This usually is a couple times a week. Our family life is
planned meticulously. Because it has to be. Detailed routine
schedules, doctor appointments, special needs workers, school
meetings, more doctor appointments. Manoeuvring daily while adapting to life.
It has been years since
our first son was diagnosed as being on the autistic spectrum and
still it is hard for me to explain. Not the explanation, but just communicating to people in a way that they understand. Now we have 3 children that are unique.
As I wrote that last line, I smiled. I smiled because I know that
there are families facing even greater challenges than us and I want
to show you my heartfelt empathy to you. :)
So, how do we explain
what is going on? Explaining to family, to friends, and to strangers that
ask - “what is the matter with your kids?” Actually instead of
explaining, I like to use the word “educate”
Here is what we do - my
wife or I put on a smile and then start to educate the person who asked the question. We explain that this behaviour is
normal for our older son...or our younger son...or our youngest
daughter. He/she has trouble focusing, can't sit for periods of time,
is easily distracted (unless it sparks a interest, and then for hours
at a time they will focus on that item). There are specific textures
that drive them to gag, so they are 'picky' on what is eaten. That
'jumping around' that they do (each child is unique – one flaps and
nods his head, one jumps, one flaps his hands) is not because they
are trying to be disruptive...to them it is a release. A release of
anxiety, release of daily pressures, release of being teased, release
of over the stimulation of their senses.
Now this is usually
what happens – I am then told of a new diet, a new treatment, a new
study by the person I am trying to explain (educate) too. I usually
smile. 99% of the people are actually trying to be helpful and
compassionate so I don't confront, I don't argue, I don't rebut...I
smile... and hope that they heard me.
In the back of my mind
I sometimes think – and I am sure parents of neurodivergent
children would concur - If people knew how much scientific research I
have read, how many experts I have talked too, how many doctors I
have consulted, how many seminars I have participated in...if people
only knew.
I just want to say one
last little thing for today – maybe it will help someone in a
similar situation or life challenge. One thing that I hold tightly
onto is my faith in God. That is what gives me hope. That is what
keeps me sane. You see, I was told by a man one day (who has a son
with autism) - “Tim, do you know why you and your wife have 3 special needs
children? It is because God trusted you enough to watch over them.”
Have a great day
friends.
