Something
happened this week that, on the surface, may seem inconsequential but WOW it
made my heart smile. So, the background is that Issy invented a
game that she had Roxy and I playing. It
was very sweet – we each had to take a turn to write the name of someone we
love on a Post-it note, crumple the note up, and then fling it in the general
direction of the person whose name we had written, that person then had to
unwrap the note and be very happy and surprised to find their name in it. This game went on for a while and afterwards,
while I was tidying up, I gave Issy a hug, told her I thought it was a lovely
game and that “I love the way your mind works.”
Issy got a very smug expression and said, “that’s because I am autistic,
I have a very special mind!” BOOM….. my
heart wanted to explode in my chest! I
literally tear up as I write these words.
Having a
child in the family who has PDA is such a unique challenge. It’s hard to convey the struggles that PDA causes
for both Issy and for the family as well.
Imagine for a moment what it is like to struggle to do the most mundane
everyday tasks. Imagine finding the
thought of brushing your hair too much to bear.
Imagine knowing that you need to bath or brush your teeth but finding
the prospect desperately anxiety-inducing; or knowing that you need to go to
the loo but finding it too hard to do until it’s too late. Wanting to go on an outing but being unable
to leave the security of your own home.
For a long time
after Issy’s diagnosis, I couldn’t wrap my head around the fact that for Issy
(or anyone with PDA) it’s not a case of she won’t do these things, rather
she frequently can’t do these things.
I read a post by an adult with PDA recently, where she tried to explain
the feeling that these simple tasks induce in her and it brought to mind the
way I feel when we are near the edge of a cliff and I really want to see the
view, but I am paralysed with fear by the sheer drop in front of me (I suffer from cremnophobia!). My heart pounds and I get a fizzy feeling in
my veins, my breathing becomes shallow and my mind is torn between wanting to
do something, knowing I should do it, but being completely overcome with
anxiety. Now picture feeling like that
every single time a demand is placed on you…
Then picture being the parent of this child, knowing that they really
need to brush their teeth/go to the loo/learn to read/see the doctor etc etc
and realizing that they just can’t do it!
Dealing with this 24 hours a day, 7 days a week. The stress….!
We are
having to learn so many new things: how to word things using Declarative
Language (it’s a whole new ball game!) how to find teachable moments in games,
when and why it’s okay for her to have screen-time, how to deal with meltdowns,
how to pick our battles, collaborative parenting, co-regulating… the list goes
on and on… Navigating all of this is extremely difficult but navigating this
while at the same time ensuring that Issy feels loved, supported, accepted and
celebrated is no mean feat!
Compounding
this is the fact that we live in a society where differences are often viewed
as deficiencies. Where unless you are neurotypical,
heterosexual and fair-skinned you are seen as “less than”.
While we
can’t provide Issy with a society that will necessarily celebrate her
uniqueness, we can certainly try our level best to ensure that she has a family
that does. And when Issy says “that’s because I am
autistic, I have a very special mind!” That
tells me that maybe, just maybe, we are getting something right.