Today with great pain in my heart, I am going to share my real story. When our first child was born, that was the best thing that ever happened to us. Everything was fine until about 14 months of age. There was language, imitation, cuddling, hugs, kisses, a lot of laughter and everything that a child should be doing at 14 months of age. After we finished the vaccine schedule, within a few weeks we saw a seizure (at that time we didn’t know it was a seizure), and a terrible one. We had our hearts in our mouth with the way our child passed out in front of our eyes. For a fraction of a second we felt that our whole world had come to an end.
No one in either side of the family had any history of neurological issues, seizures, epilepsy, Down syndrome or any kind of genetic issues. We were very confused as to what happened to our child in that moment.
One by one we starting seeing regressions like complete loss of language and only blabbering remained, mealtimes became war zones, no ability to learn or understand anything, loss of eye contact, no memory, extreme sensitivity to sounds/temperatures/textures/touches/crowd, repetitive actions, terrible meltdowns and seizures reached to a new height everyday. Seizures became the only form of communication. It occurred even in sleep. They became so severe that we witnessed it 3-4 times a day, everyday. We became experts at CPR.
We just failed to understand what happened with our child overnight and couldn’t believe that this was the same child. I visited several times to my child’s pediatricians and kept on complaining that there was something really different and haunting. Every time the doctors would send me home with a handout saying it was long breath holding spells and nothing else. But we could clearly see, it wasn’t what the doctor was saying. Anyone as in family, friends or acquaintances who witnessed our child’s seizure would be so disturbed that they weren’t able to sleep for a couple of days. They would say, “We pity you mamma.” Some close friends said, “Might be you should see a Neurosurgeon.”
We failed again to understand that why going for groceries, taking a shower or simple chewing and swallowing was such a nightmare for our child? We couldn’t go out for parties, social gathering, dinners or movies. Especially, when I saw kids younger than my child, who could easily do everything a child, should be doing at his or her age, I would slip under depression. I very well remember those sleepless nights, those unstoppable tears, that anxiety, that worry and restlessness regarding my child’s situation.
I have lost the count of how many doctors, nurses, specialists and hospitals I approached for help. I am being completely honest here, first of all those so-called medical professionals couldn’t even quantify what was wrong with my child. Then an acquaintance out of nowhere suggested that my child needed evaluation and therapies to grow normally. I can’t express how offended I felt when I heard the words like ‘grow normally.’
We waited for 2 months to get an appointment for evaluation. At the end of evaluation they broke out the word, “It’s Autism.” I had never imagined even in my wildest dreams that this could happen to our child. My whole world turned upside down, I broke down into tears in front of all the therapists, evaluators and case manager. My husband held my hand but tears still kept rolling down my cheeks.
We started looking for the symptoms of Autism, thinking may be the evaluator was wrong. But to our heart’s misery she was right to the core. It was extremely difficult for us to accept it. We accepted Autism but still continued to believe that our child was perfect. We decided to look for a solution and make our child independent.
The strongest decision that we took a week after we found out the truth, “We will never give up on our child and never tell anyone about our problems.” The ‘only’ reason for that is, we never want our child to be judged for the shortcomings or failures on the basis of Autism and secondly we don’t want to attach it to our child’s name for the rest of the life, let our child decide if anyone needs to know. I have become selfish for my child’s identity. My only determination and drive is my child’s recovery.
My child is a piece of my body and there is no one on this earth that has made me fall in love so mad and deeply as my baby. So go judge me as much as you want, I am selfish for my child’s well-being and independency. I have gone to such unimaginable extents of hard work that people thought I was crazy. I battled with my fears and uncertainty.
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