Yes, it’s true, absolutely no one and nothing can prepare you to be the parent of
a child with autism.
But, no, this sentence does not have a tragic connotation, no matter how much it
may seem like it at the moment when the words: “your child is on the autism
spectrum” first resonate before you. Parenthood when you find out that your child
is on the autism spectrum is not a tragedy that marks you forever, just a different
path, which you did not exactly choose, but will change you forever, believe me,
for the better. No one prepares you for parenthood as it comes, for that different
path, full of bends, ups and downs, with signs that you do not always understand,
with directions that you do not know where they lead.
The world is not made to measure. What is the “normal” that defines the
majority compared to the uniqueness of each child with autism?
There is noise, commotion. Always someone is in a hurry, everyone is saying
something, proving something. But not my child on the autistic spectrum. He is
silent, but at the same time he speaks loudest to the one who knows how to hear
his thoughts. He covers his ears to defend himself from every attack of someone
else’s everyday life. In that silence, my “senses” of love, humanity, empathy,
understanding, and patience sharpened, making me a parent with special power.
Who says love always has to be loud? Love doesn’t need words, but presence
and actions.
It’s okay to love routine, the little kingdom of comfort, in which it is entirely
expected to be afraid of the future sometimes. One look from him at me, one less
fear in my soul. These small, but actually huge victories are not counted by any
statistics. They don’t exist anywhere, and they are the most important thing that
nourishes my hope.
My autistic child taught me the power of patience and perseverance. How can I
explain to you the feeling when you repeat something a thousand times, with the
hope and faith that it will deceive your little one into at least one look, one word,
one extended hand, meaning in the game, a door into his world. I often wonder
why the system persistently tries to “insert” my child on the autistic spectrum into
that big picture of society, without trying to enter his world. And that world is
beautiful, with rainbow colors, only if you have the key to that seemingly iron door.
As if my child is a pebble in the mosaic, which somehow bounces off the picture,
shines brighter, and I often feel like I have to be here just to explain my child’s
actions to others, just to make them more comfortable.
My child taught me not to be bothered by the fact that I am not always understood,
that we are not always understood by the environment either. Instead of learning
to explain, I learned to stand firm by his side, calm and proud, even when the
sharp looks of passers-by or their silent comments try to cut me like a sharp blade
when my child is experiencing his own little shipwreck.
Hope does not mean not looking reality in the eye. Hope comes when acceptance
of the situation occurs and when moving on.
I realized, I cannot fix the world. I do not want anyone to value my child on the
autism spectrum based on how well he fits in. What if the environment is not as
solidly based as we realistically think? Would we still want to be a part of it?
My child did not teach me how to be a perfect parent.
He taught me how to be a human being. To go through life more slowly at a pace
that we ourselves determine, to rejoice in the little things, to be a braver person,
to experience instead of survive, not to compare and to love most sincerely.
Believe me, courage is getting up in the morning and continuing. To fight without
medals on your chest, to bravely embark on a new battle, even though you have
lost many battles before, without applause if you achieve a huge victory. My
autistic child taught me the true value of life by allowing me to feel what true, pure
and most sincere love means.
Believe me, sometimes I think that only those angels on earth know what true
love means. It would be a great shame not to enjoy it, denying them from us.
Written by:
M.A. Ana-Marija Ciglenjak Simonovska
