Being a parent to a child with special needs fundamentally changes
you. While I am now more than willing to go toe to toe with any parent, therapist,
doctor, teacher or school for the well being of my child, I haven’t always been
that way. Early on when I was seeing “warning signs” I had no clue what they
were warning me of. When the idea of Autism came to light, I had to google what
Autism was. When professionals told me about limitations, restrictions or
inabilities of my daughter I was scared, I was sad and I was shaken. How do you
process all your hopes and dreams for your child are suddenly gone? How do you
wrap your head around your child never graduating from needing caregiving? What
does it mean to fight for your child? How do you beat the odds? Where do I find
success stories to propel me forward? Why can’t her teacher love her like I do?
Will she ever have friends? Will she ever date, get married, have her own
family? Where do I turn?
You see as we grow up, we picture our perfect lives, married
with 2 kids a dog or two, maybe a cat, and a yard for them to play in. Then
from the moment the pregnancy test says “positive” you start dreaming about their
perfect life too. So much of this is programmed into you from as far back as
childhood, and its good. We all want and should want good lives we can be proud
of. But when the doctor says “Autism” and then says the list of “Nevers” that inevitably
will follow, that vision that you have cultivated your whole life shatters. All
of a sudden you are struggling to understand your new reality and often jump
into action so fast that you never let yourself process the trauma. So, the grief
will come in waves, silent moments where you let yourself- just for a moment-
let go, not hold on so tight and have the needed breakdown. You don’t wallow,
you don’t have time for that but you do need these moments to be honest with
yourself and heal. These moments not only allow you to heal, they change you. Each
time you stop, pause and grow- you mature and develop into the new you.
The person you are becoming is so much stronger than you
thought capable, this new you can hear the words that use to cut like a knife,
the new you can see the progress of your child, despite the setbacks and challenges.
And the new you can fight for your child in ways no one else can and ways you
never thought possible. You will find endurance to stay up all hours
researching, you will find hope in others stories, you will find solutions in
resilience. You will find friendship in others grief and you will prevail in
being your child’s champion.
Do not lose heart in being sad, worried or overwhelmed. Know
that each of these moments is shaping you into a warrior. You very likely are
in for the fight of your life and it is certainly the fight of your child’s
life, but should you overcome the 1,000 battles and endless war- you will have
managed to help your child become their best and you can rest knowing that the
dream you had for them once upon a time has been replaced with a bond and love
that is indescribable. This new reality will fill you with a new vision of their
future and if you really dial in you will see the thousand little miracles
every day is made of.
I may have lost the idealistic, naïve, and short sided
version of myself, but I now have perspective, love and hope. I can sympathize
with others; I can understand pain and I can see hardships. Life can be hard,
but it can also be beautiful. Learn to make your plans flexible and enjoy the
moments along the way.
