[When I began this blog, in January, my goal was to write about my experiences with my son. Nothing more. As I wrote I got to know the autism community, through this blog and Twitter, and an amazing thing happened. I found a wealth of information, support, answers to specific questions and really genuine and kind people from all over the world who offered advice, support, comfort and friendship.
This is Autism Awareness Month. There was a lot of talk about it on the first couple of days of April and then, it was back to business as usual. Let’s not forget, as the month wears on, that we can still shed the light of awareness, blue or otherwise, every day.
This post is for the ones who don’t know us- the ones who pass by us as we fight our battle every day. It was inspired by what Stuart Duncan wrote here.]
So you have a child and you feel something may not be quite right. You don’t want to face it or you aren’t quite sure, or you haven’t found the right combination of words that have struck home with you. Maybe, just maybe, I sound like you. Maybe I can help.
Take a look through my window…
I used to be you. There was a time that I dreamt of having a family. I was never so bold as to say out loud that I thought I would be a good mom. That would just not be nice. Plus, I had my doubts. Would I have patience? Because I sure did not have it before I had my child. Did I want to give up the selfish days? Of course, I did. But there was fear. Fear of the simplest task of changing a diaper or breastfeeding or giving a bottle. How would I burp a baby? How would I hold one?
How would I afford a child? How could I pay for school? Because, surely, I would want to give my child the best education. I knew I could manage it. After all, I was smart enough to have an advanced degree and career before planning a family…
And health wise? Oh, I was the healthiest mom-to-be of all. I did not smoke or drink. I worked out for 1.5 to 2 hours daily and logged every mile, calorie, and heart rate. I cooked the healthiest meals, in all the right food groups, and ate organic produce. I took vitamins and drank water. I was the perfect specimen. Not like all those moms who had one night stands and did drugs, drank or ate nothing but crap during pregnancy. No, no. I was way better than all of them.
There was one more thing. I would never -ever- let my child behave the way I saw other mothers let their children behave in public places! What kind of parents were these that would not control their kids in public? Oh, the screaming and crying in the lines at the mall, grocery store, theater, doctor’s office, post office, restaurants and on the planes! That was me you saw casting that evil glance at the mom who child was screaming and kicking and having the tantrums there. I would be better. My child was going to be perfect.
I got pregnant. I bought everything the pregnancy world of consumerism thought up to sell. I gave up everything including phthalates, fish, caffeine. I drank only water. I took vitamins and folic acid. I cared. I came home with a tiny bundle of joy.
But then something happened.
The tiny bundle of joy just would not stop crying. For 2.5 years. Every night. Every day. He grew but did not nap. We were told it was colic. The tiny bundle grew larger than all the other children. He topped the charts in size. He did not eat. He took little food, supplemented with bottles of soy milk for 2.5 years. It was the only thing that seemed to quell the crying, if only for a half hour at a time.
There were times in the middle of the night, I wanted to take him to the emergency room because his screaming terrified me. It was relentless. Only the theme song from a cartoon would soothe him. I played it over and over from 2:30 in the morning until 4 a.m. when he finally fell back to sleep in my arms. I was exhausted. And yet, I still did not know.
The growing boy did not talk to me. He did speak. He spoke the requisite number of words, according to the pediatrician. He did not use the words in the fashion in which they were intended, although occasionally he would and those were the times I’d write it down. The growing boy knew his alphabet and numbers before he was 2 years old. He started to spell as fast as he could recite his alphabet. He knew his shapes and the planets before he was 2.5.
Just because he did not speak to me, I reasoned, did not mean he was behind the other kids. The boy was a genius. He would get to it in his own time. There was nothing that would indicate a delay or a -don’t even speak it- developmental problem. That was ridiculous. If I ignored everything else, and focused on the genius, it would all work out. I did not know. Maybe, I did not want to know.
The boy would repeat things – lines from TV, books, and his toys. I thought this was the way all children learned to speak. He taught himself how to read before he was three. I still did not know.
The growing boy would never stop running. When there was no room, he would run full-on, body slamming himself into the walls. He would laugh and laugh. He would fall to the floor, get up and walk on tiptoes. That was okay, I told myself. He’s a boy with lots of energy. He’s having fun.
He would spend hours watching the wheels on his cars spin around. He would play with buttons on toys. He wanted a toy toaster so he could push down the button and watch it pop up. He wanted to play with timers and computers and phones. That was okay. There were toys that did all those things. It must be normal.
Before I knew it, I had become the woman to whom I used to give the evil eye. It was my son, my joy that would scream in the middle of the mall and fall to the floor, limp and yell and kick and cry, tears streaming down his face, as I carried him out of public view. It was my son who would grab things that did not belong to him and cut people off to touch the handicapped button to enter or exit a building. I still did not know.
Finally, one day, when he was 3.5 years old, two weeks before Christmas, the pediatrician said the six letter word I had avoided like the plague. She said it gently while my son screamed and cried under her exam table. “He may have autism.”
It was the end. It was the beginning. It is my life.
It really is not as scary once you hear the diagnosis for real. You don’t have time to be scared or self-absorbed or anything other than your child’s advocate. That advocacy comes from love. Pure and simple. The only thing I would change if I could is that I would have demanded testing for a diagnosis when he was much younger if I had known. If only I had known.
Do not blind yourself to autism. You already love your child with all your heart. Get early intervention. It is your child’s best chance.