Tuesday, July 30, 2013

Looking Back


I was sitting today and thinking, how far the boys have come from the beginning of our journey.... I look back to that first day when Evan was 17 months old and I woke up to him having a seizure. I woke up to the beginning of a nightmare that I didn't know how to handle. I thought about his second seizure just twenty days later that went on for over ten minutes in the ambulance. The paramedics were not sure if he lost oxygen. I thought about how I couldn't get into the hospital room while they were working on my little boy that was just laying there still. I didn't know if he would wake up or what was causing my angel to have seizures. I waiting outside his room and then felt relief when the nurse told me I could go in. He lay there like he was sleeping. Tubes and wires were everywhere on him. I didn't know what the doctors were about to tell me. He made no noises or moved around. There was just silence and everything was completely still. I remember how I wanted to pick up my angel and hold him. When the nurse looked at me and asked, "do you want to hold him?" I of course jumped up and said, "YES please!". She came over to the other side of bed and said, "let me help you" I thought, I can pick him up on my own, then thought she meant with all the tubes. But no what she meant was help pick him up. He had no muscle tone what so ever. It was like picking up a rag doll. I had no words for what I was thinking of feeling at that moment. The tears just poured down my face as I held my angel in my arms. I kept saying, "it's okay, Mommy is here and she loves you. Please wake up baby, please wake up." They would take my son to get multiple tests and scans and no I wasn't allowed to go with him because I was pregnant with our second son at the time. I would spend the next year and half watching him regress and no matter what I did, I couldn't stop it. No more words. Only screams and scratching, kicking and biting. The night terrors were a nightmare. We couldn't have anyone come over to visit us, he would just scream and run and hide underneath his bed. He wouldn't stop screaming until they left. We couldn't go out in public; he would lose it in the stores. I felt helpless and lost. I would also live in fear that my second son would also begin to display these same symptoms. I feared another seizure would happen. Something I assure you don't want to ever see your child go through. 
Once we were finally referred to a specialist and found out he had Autism. Our first thoughts.... What is Autism? We would soon go home and research Autism. And cried our eyes out because none of the information that we found seemed good. The ideas that we had for our child, were now gone. We sort of felt like we were mourning the loss of our child. I cried for several days. I asked why my child. He didn't deserve this. He is so innocent. It's not fair! 
Then one morning, I looked at my son, and decided that enough was enough. I wasn't helping him by sitting in the house and crying my eyes out. I had to get up and get him help. What ever needed to be done, it would happen. I would make sure that it would happen. The reality of how expensive that help would be would hit home very quickly. And understand that we couldn't afford that help that our son so desperately needed. We just didn't know what to do. 
We soon began our Autism journey, for both of our sons' it would turn out. IEP's, OT, Speech therapy, Neurologists, Psychologists. So much of our lives became about getting the kids the help that the needed. The hell that we lived in, and we felt that no one understood. I can't tell you how many times we heard the "they don't look like they have Autism." I still would love for someone to show me what Autism "looks" like. Actually I know what it looks like. Both of my kids. All the kids and adults with Autism, that's what it looks like. I heard, don't use their Autism as an excuse for their behavior. Of course this would come from those who knew nothing about Autism. I would soon stop talking to most if not all of my former friends. They just didn't understand nor would they ever understand. 
This journey, we are all on it, and I have seen such improvement, achievements by both of our boys. I am one very proud mother of the both of them. They are my heroes. They are the reason I am becoming a teacher. I love them with all my heart. I know that it's so scary when you first get the diagnosis. All I can say is never give up hope! Never give up on your child. I have learned that they will teach me so much more than I thought I could learn.