As many of you know hearing the word autism is to most, one of the worst experiences if not the worst experience of our lifes. When we received Alex’s diagnosis we were in very bad place in our lives. My husband Luis had lost his job December of 2008. April of this same year we had purchased our first home, something that we were so proud of. I was only 25 and he was 26 years old, we both felt we were ahead of the game. He had a really good job, paid great money which allowed us to buy the house. We had a beautiful son, you could say we were living the American Dream. Our dream only lasted about 8 months, because of the economy crashing. Luis was laid off two weeks before Christmas, great timing right? So there we were standing in a house that we had no idea how we would pay. I was about 3 month months pregnant with our second child, Julianna. So needless to say it was not a good situation. I told Luis why don’t we leave to my god mothers house for Christmas and figure out what will do after that. Christmas came and went, New Years was here and now its time to face the truth. We had to go back home and figure out how we would pay for our mortgage, how we would feed Alex, how would we survive. Luis would be receiving an unemployment check but that wouldn’t be sufficient for everything we needed to pay. After a long conversation we decided to stay a little longer since I wanted to see other doctors about Alex’s behavior.
I have seen 2 pediatricians already regarding Alex’s regression. Two of which I stopped seeing already because they were not listening to my concerns about Alex. I kept telling them something was wrong but no one would listen. The pediatrician I took Alex to for the first year of his life always told me Alex was developing great, ahead in many developmental milestones, that he would be a very tall man and that he was a bright little boy. I remember like it was yesterday when he told me “Lucy you are doing an awesome job at raising this child” I agreed with him. I never missed an appointment, I took him to get his vaccinations right on time like it was a religion I needed to follow. I kept up with every appointment and called his office at every single concern I had, never letting my baby suffer or so I thought.
The second doctor I saw was at the time another pediatrician Luis’s aunt had recommended, she also took my concerns and dumped them in the garbage can in her office. I kept telling her I think something is wrong with Alex, he is not the same. He doesn’t talk which is weird because all the other kids his age have words already, he wont respond to his name at times and is forgetting things he knew already. Long story short she didn’t listen to me, She said he wasn’t talking because he lived in a bilingual home or because he was a boy,I asked her to refer us to Early Intervention and her answer was lets wait until his 2 1/2yrs old, Alex was 18months at the time.
I scheduled a visit with the OB-GYN I saw during my pregnancy with Alex. at the appointment she took one look at Alex and said ” You are right Lucy, something is not ok”. She gave us a referral to see a developmental pediatrician, but that would take 6-12 months. They had a ridiculously long waiting list, I couldn’t wait months to see a doctor I needed an answer now. I called around until I found the Early Intervention program. They came to our house to evaluate him within a week. I anxiously waited for the day of our appointment, I had so many questions i needed answers to. About 15 minutes into the visit i asked them, ” does Alex has autism?”. The two women looked at each other and in that instant I knew my suspicions were right. I then heard “Yes your son has Autism” my life completely stopped. Life as I knew was over. I was 6 months pregnant by this time, Luis still unemployed and now our son had autism. What else could go wrong I asked my self, what else? I will be brutally honest when I say that the first thing that came to mind was Why? Why Me? Why Alex? Why God? Why? What had I done to deserve this? And if this was a punishment, punish me bit leave my son out of it. I felt this was a punishment that I didn’t deserve, that Alex didn’t deserve. I was very mad at God, I thought he had done this to hurt me. Hearing that your child will probably never speak, never look at you in the eyes, never graduate from high school, never say I love you,that kills you. It kills you inside, its like being alive while inside you are dead. Nothing else mattered nor had meaning or purpose to me. The whole world could collapse and I could give two cents about it. I cried for days, it seemed like eternity to me, living was not something I wanted to do anymore. The joy of being pregnant with my precious little Princess was gone. I no longer saw joy in life, life was painful, life was a punishment to me. I wanted to run away and never look back, I wanted this to be a nightmare, a horrible nightmare. People kept talking to me but words would just go passed me, I was not listening, I was dead. Everything I wanted for my son was no longer going to be possible, no HOPE was given to me, nothing, just a diagnosis that I knew nothing about. And not knowing killed me, the things I did know about autism were scary and nothing to look forward to. I had seen a commercial about it, but never paid real attention to it. I guess I was going to learn about it the hard way, a way I would never forget. Looking at Alex was torture, I would call his name just to prove that he would look at me, that he was fine, those women were crazy, my son was perfectly fine. Alex only proved them right by not even moving when I called his name. He had no eye contact like those women said, he didn’t respond to his name, he had autism and I was dead. My precious boy was sick and I had no idea how to help him. They didn’t offer too much help, to them autism was a life long disability. He could make progress but that would only happen IF it happened with time. We were on our own. All they recommended was reading about autism and to be strong. Strong huh? Easier said then done if you ask me. To me life as I knew it was over. There was nothing to live for, my son was sick and if there is nothing I can do to help him then what is life worth? I wanted to hear him call me mom, I wanted him to have friends and be able to live a great life. I wanted Alex to be happy and cheerful, I wanted him to have the life I wish I had. I was going to devote my life to make him happy, because to me if he wasn’t happy I could not be happy. Being his mom was the reason why I woke up everyday and smiled, he was the reason I lived. How would I go on with my life if he was not going to be a part of it? He was not going to be able to enjoy life, all he wanted to do is be alone, Alex didn’t want to be around people, when people would go see him in his room he would shove the door in their face. He wanted nothing to do with others , he was happy in his room alone while I died slowly, very very slowly. I was not going to be able to live if I didn’t find a way to undo this. I knew it could change this because he was not born like this. I asked myself “How could someone go from developing ahead of others and now he is not there?” As far as I understood autism was a neurological condition, this would mean that he was not mentally there? I didn’t really know what that meant. I could not stand to think that my baby was mentally not there, I imagined me feeding him for the rest of my life, changing his diaper forever, him living and be taken care of by me until I took my last breath. That was not the life I wanted for him, can you imagine this?
God could not have possibly be doing this to him, or me, there had to be something I could do. I was not going to stop until I found it, I was not going to live like this, hopeless. I have never been the one to give up, I always found a way out and a way up, this would not be the exception. I said to myself ” Ok Lucy you have always said you are not a quitter, well here is your chance to prove it, here is your chance to prove to yourself, you are a STRONG WOMAN, a MOTHER and that together was going to be enough to get Alex out of this”. I finally got out of my room and was ready to face the world. A world where I knew I could find HOPE, a world that was not going to let me down, nor let Alex suffer the rest of his life. I set out on my mission, a mission where failure was not an option. Failure would mean loosing my happiness, loosing my life and loosing my son. That was something I was not willing to do, not as long as I lived. I was going to find a way to recover Alex even if that took my life, I was going to find that cure no matter how long it took, I was not going to give up, never have before, can’t afford to now.