One year ago today, we first heard the words, “Your son has
PDD-NOS”. My response, “What is that?” The psychologist replied with a single phrase
that shook me to the core, “It’s on the Autism spectrum.” I felt as though I was living on a planet
inside of a snow globe and someone shook it as hard as they could. I wasn’t sure which way was up, what day it
was, who my child was or who I was. All
I knew was, with that one phrase, my life would never be the same and that
moment would be a pivotal turning point.
I received the word by phone while at work in my
office. I tried to listen and soak up as
much information as possible, but part of me was so shocked that I went numb –
and then broke down completely. My boss
told me to go home and take care of myself.
I’m so thankful that I work in a flexible, kind, understanding and human
office. It has made all of the
difference over this past year. I went
home on that bright, warm September day, promptly hugged my son and stared at
him, trying (unsuccessfully) to reign in that powerful wave of emotion. We decided to go to Union Square Park so we
could be together as a family and K could have some fun. As we pushed him on the swing, I remember
thinking, he is the same person now that he was when I left this morning, but
he seems different. At that same
moment, my husband said the exact same thing.
Autism. How was that
possible? How could I possibly have
missed that? What did I do wrong? When could we catch a break? Wasn’t it enough that we lost Dashiell and
were deprived of a “normal” pregnancy, but now we’d never know what being a
parent to a “normal” child would be like?
What will happen to him when he gets older? And then, I thought, “Thank God it’s not
cancer, or some terminal illness. We can
deal with this.”
Looking back now, those thoughts seem selfish and
ridiculous. I wouldn’t trade Kannon,
quirks and all, for anything. The truth
is, I went through a grieving process. I
think I had to trudge through the depths of despair in order to come out fighting. I now realize that the conversation with that
psychologist was a real blessing. I
embrace the label of “autism”. That
label has enabled us to provide Kannon with outstanding care. The progress he has made in less than a year
(he didn’t really start therapy until November 2011) is astounding. That label has given me a deeper
understanding of who my child is. It has
given me patience and understanding when he gets overwhelmed or struggles with
transitions. Before, he was just a tough
kid, now I get it. Now, I understand why
he needed to constantly be bounced on the exercise ball as an infant. I understand why he always needed to have a
white noise machine. I understand why he
knew his letters by 18 months and was reading by 2.
I also understand the answer to the question, “why me” that
I asked myself repeatedly in those early days.
The answer is because I can handle it.
I have the wherewithal to be able to negotiate this ridiculous
process. I am blessed with a beautiful,
warm, gifted child with a magnetic personality.
I am blessed with the best husband anyone could ask for. This has only brought us closer as a family
and cemented my husband and I as a team.
I also have the great fortune of having had arguably the best mother in
the world. Her example is emblazoned on
my brain. She may have died 13 years
ago, but I think of her every day and wonder what she would do. The answer to that question largely guides my
decisions and there is no question that she is here with me. This is not to say this has been an easy
year. It hasn’t. At times, it has been downright miserable,
but even in those moments, I need only look back to one year ago and see how
far we come.
Today, as I write this, I am filled with hope and gratitude. In this short year, Kannon:
-
Has gone from eating nothing but pureed baby food
to cooking and eating just about anything
-
Has enjoyed buying new shoes (before, when he would
try on shoes, he would scream like we were cutting off his feet)
-
Largely stopped scripting his speech (it still
happens, but much less)
-
Started connecting with peers
-
Started engaging adults and children in our
building and on the street
-
Started sleeping through the night
-
Transitioned beautifully into a new school (one
year ago, it took over 2 months and a LOT of tears)
I am so thankful to his wonderful therapists, his school
last year, his developmental pediatrician, his nutritionist, his neurologist his
geneticist, his new school and most of all, my husband. With this incredible team all working
together Kannon’s potential is unlimited.
I will be one of the driving forces to help be right there to help him
reach that potential. All I can say is
watch out, world. My child is going to
make a huge and positive impact on this world!