For 40 years now I’ve been cruising through life as I had always planned. I’m one of those people who planned pap smears and birthday parties a year in advance. I'm pretty focused and rarely let things throw me off track from achieving my goals. When life happened to throw a curve ball my way, I’d keep going--moving toward the life I had always imagined for myself conjured up somewhere between 1st and 9th grade. Like most, I dreamed about having a career, a nice home with a tall, dark and handsome husband who happened to be a great father to our children and, most of all, loving my life.
Flash forward to today. April 2009. I’m hating my life and I can’t imagine hating it much more unless someone I loved was given a death sentence. That would be pretty bad and I know things can get worse. And I do know that people have it worse. But this is my blog dammit and my story so I get to dwell and complain about the things that effect ME.
A day I will never forget happened 1 1/2 years ago. A truly life-changing moment which froze time for me. It was a day of great sadness, disappointment and heartache. It was the day my (then) 13 month old was diagnosed on the Autism Spectrum (PDD NOS). It was the day I thought my world would fall apart.
At first, we just thought the Doodle Bug was quirky. Even as a newborn he had some curious traits. It was so cute the way he would wave to the sky—we used to joke that he “saw dead people”. We thought he was going to have such strong calf muscles from standing on his toes, and how talented he was that he loved to open and close doors at such a young age. We used to joke that he was going to be a Door Man when he grew up. How funny, we thought, that he would flap his arms when he got excited and how he would lay on his stomach and kick his foot up and down. It was the not talking or walking at 18 months that alarmed us.
Learning that your child has a development disorder is bad enough, it was the uncertain gray area that keeps me up at night worrying about how severe his condition is going to be. The not being able to get a straight answer from any of the doctors involved. The rip off DAN Doctor we paid $1600 out of pocket to see. The hope that fades in and out on whether or not Autism can be cured. Will my son ever have a normal life and be able to function on his own? Or will he always be riding the short bus? Will he ever talk? Will he regress and get worse and slip into that dark place where you cannot get through. There are so many unknowns, my brain hurts thinking about it and it has begun to consume me.
The day I found out my son was autistic would forever change my world; it changed me—but not necessarily for the worse. Oh, who am I kidding? Yes, it's made me an even bigger Bitch than I used to be. Never much for optimism, I do believe that you are the creator of your destiny and all things truly are possible.
That's what I get for never experiencing much tragedy in my life. I quickly learned that things aren’t always up to us…some things are out of our control and the hardest thing for me to do is to accept that and stop trying to find the answer why this was happening (to us). Although I can't help but wonder: Was it in our genes and hereditary? Was it something I ate during my pregnancy, perhaps my addiction to $4.00 a day at Starbucks? Did I not eat enough fruits and vegetables? Was it the pesticides on the fruits and vegetables that I ate? Was it the immunizations? Was it food allergies? Was it the chemical BPA toxins in his plastic baby bottles? I replay things over and over and wish I had a do-over so that I could go back and fix this. I even have feelings of selfishness about having another child at my age, after all I was no spring chicken pushing 40 so what was I thinking having a child at this age? What did I expect? Why couldn’t I leave well enough alone and be happy with what I had? This, I began to believe, was my fault. Why did I always have to want more? My ex-husband voice echoes within me…"you will never be happy”.
The rest of my life is on cruise control, working full time while trying to focus on my son’s health. That, while trying not to forget I have another child and husband that needs me as well.
Having a child with autism brings new meaning to the term “patience tester” especially when you throw in the “terrible twos” stage. Taking him out places turned into a freak-show that, at first, I was embarrassed by. I couldn’t bare the stares and whispers of this “out-of-control” child I had who did nothing but scream and shake his head back and forth. People don’t understand that he is special, he looks exactly like any other toddler, except his behavior makes him look like the biggest brat you have ever seen.
Taking him in public turned out to be a serious cause of stress for me. I wanted to get tee-shirts made that said things like, “my autistic kid rocks”, “kiss my asbergers syndrome”, “stop judging my mom, I’m autistic”, “this isn’t a tantrum, I’m on the Spectrum”. Then I realized I was literally putting a label on my child. What kind of mother was I? His learning disability and the way he processes information has given me the gift of awareness. It is my job as his mom to help him try to understand things while not being so focused on how other people view me. Not caring what people think has been a huge hurdle for me to overcome and I hate to admit it but I still struggle with it. Every day.
Most people take for granted that communication skills and learning abilities come naturally. At two years – 8 months old, the Doodle Bug has never spoken one word and I can’t help but wonder if he ever will. Some days are better than others and I had to learn that everyday I could not expect a breakthrough or I would be setting myself up for disappointment. Being new to this autism thing, I didn’t know if I should treat him like a “special” child or treat him like I did my other son. These are the things they don’t teach you in college Economics or American History.
Just when I thought it couldn’t get worse, 3 months ago on January 20th—Dominic began having grand mal seizures. The heartbreaking kind of seizure no one should ever have to watch someone they love experience. Since then, Dominic has had increasingly more and more seizures and is experiencing different kinds of now. Staring, Head drop and still the big ones. He’s been to 2 specialists and had every test imaginable done and they cannot figure out why. They continue to up his dosage of medicines which are not working. He is now on 4 different anti-convulsant drugs and is a Zombie. What happened to my cute little autistic boy? Now he has no balance or strength, can’t focus, can’t sleep and is highly agitated from the plethora of drugs they have him on.
Now I think, I would take the autism over the epilepsy any day.