April is Autism Awareness Month. It's a month that has been dedicated specifically to spreading knowledge and information about ASD through media, word of mouth, events and every other method possible. It's a month dedicated to educating those who don't know what it means to be autistic or have a child who has ASD. It's month dedicated to helping people know that something is being done and they are not alone. It's a month dedicated to sharing knowledge, love and concern.
And rightly so.
Autism is growing. And it's growing fast. There are confirmed statistics to prove that one in every 50 children born in the United States has Autism Spectrum Disorder. 'Anyone you know, knows someone with Autism' is a statement that I have heard often while living here. The numbers are similar around the world in other countries.
There has been a whole month put aside for spreading awareness about this issue. Not a day. Not a week. Not two weeks, but an entire month.
That says something to me. Something scary.
Personally speaking, I am aware of Autism all year round. It fills my life, in an all-encompassing way. It's right there for me to deal with, morning, noon and night. I have come to call myself an 'Autism Veteran,' a self-invented term to congratulate myself on the fact that as a parent of a child with ASD, I have been there, done that and I have survived. As much as one can in a situation like this. I have lived.
The question is, how does one deal with Autism? More importantly, can it ever be explained? How does one quantify the emotional upheaval starting from the point of first getting to know of the diagnosis to the point when you start accepting it as part of your life and your child's? If you asked me, I wouldn't know how to answer that. I don't know.
What I do know however is, how it feels. And what it takes to do it.
So, when someone asks me what it means to raise a child with Autism, I want to say this and few more things.
It means spending sleepless night worrying whether your child will ever be able to say a three-word sentence independently.
It means wondering whether he or she will ever experience things like friendship, love and companionship in their lives.
It means constantly working, interacting with your child every single minute that they are with you, making sure that they don't tune out of the real world.
It means feeling guilty even if you spend half an hour doing something for yourself in your child's presence because you know you should be engaging with them.
It means being in a roomful of parents wishing that their kids would shut up for a minute and you wishing that yours would talk, if only a few words.
It means nodding misty-eyed in agreement when a friend tells you that she cried watching videos of her kid with ASD from three years ago and realized how little he interacted with anyone.
It means going to the park and seeing that your kid is being left out of games by other kids because they know somehow that he or she does not understand how to play them.
It means scolding yourself every single day for categorizing your child and yet secretly hoping that they would be 'typical' one day.
It means looking around and seeing most parents talk about how hard parenting is and only managing to smile upon hearing that.
It means hoping that your child will say "I love you,' spontaneously to you some day and you will be besides yourself with joy.
It means living with a constant raw ache in your heart and yet counting your blessings because it could have been worse.
Lastly and most importantly, it means being on a life-long journey, one that you did not choose but one that has taught you to love your child for what he or she actually is, as opposed to what they should have been. It means learning to love unconditionally.