I pictured something entirely different than what it has become. To my husband’s and my pleasant surprise, we found out we were pregnant just 4 short months after getting married. We were thrilled and I eagerly pictured the boy that he was going to be. I knew he was a boy from the beginning and that was what I had always wanted first. Everything seemed to be normal throughout the pregnancy until my water broke 7 weeks early. He seemed fine, big for a preemie, and because of lots of determination on the part of us, he only spent 4 short days in NICU. He was healthy, but progressed slowly. “He’s fine,” we said “Of course he will progress slowly, he was born almost 2 months early,” or so we thought. He turned 2, and he still couldn’t talk or do any of the things that a normal 2 year old could do and we kept waiting for it to happen, the light bulb to come on and magically he would be caught up. We tried everything… “We’ll put him in school, he just needs peer models,” “I do too many things for him, I need to let him be more independent,” “He’s just not being exposed to enough language, we’ll read more,” and most of these things failed. He learned some things, like putting on his shoes and clothes, so we felt maybe we were on a good course. At 2 ½ he finally started to say some words, and it was mostly repeating, “That’s how you learn,” we said, but at 3 he was still repeating. We went to the doctor for something totally unrelated and they were used to him not speaking, so it was not a big concern for them, until he repeated something that the doctor said. The doctor turned to me and said “If he is still repeating at this age, you need to get that checked out,” and I didn’t hear the rest, just one word registered with me…Echolalia. To be honest, I was in hardcore denial, and I waited a few days before I even looked it up stubbornly refusing to believe that there was anything wrong with my son. Eventually I relented and did some research. The first article I clicked on seemed promising so I began to skim through not paying a lot of attention, and then my eyes focused on a particular phrase, “…usually associated with Autism” and my world shattered.
Autism? Autism. “My son is not Autistic!” , I told myself over and over all the while blinking back furious tears as the realization gradually dawned on me, my son is autistic. I had never looked up the signs of Autism, but my heart and my mother’s instinct knew that I had my answer. I don’t remember how long I wept that day, or how many times I’ve wept since, wept for the difficult struggle ahead for him, the life that I felt he had lost, the death of all my foolish childhood fantasies about motherhood, and the day to day struggles that we encounter. Reality came barreling down on me full force as I thought “Oh no, what can we do?” In the beginning, I felt powerless. Would he ever be able to live by himself? Would he ever want to get married? What about school? College? What were we going to do? My mind was racing to all of the worst possible scenarios. I began to research the signs and some of the more obscure ones fit, but not some of the main ones. Preoccupied with spinning, check, repetition, check, quoting entire scripts from his favorite movies, check, and the list went on but the one thing that I couldn’t check was unsocial. He was extremely social and loved to be around other kids so I told myself that he was too social to be autistic. To get some perspective, I made an appointment with his doctor to talk about what was going on, I didn’t know what we could do but I knew we just couldn’t let him drown. She didn’t rule out Autism, but she said that she didn’t see much to make her jump right to it. She told me that she saw some really encouraging things, gave me a whole list of things to do, and told me that she was going to make an appointment with a specialist for us. We are very fortunate to within an easy driving distance of Amos Cottage, which deals with these kinds of things and the specialist had a year long wait, so I began to work on the rest of the list. We enrolled him in some programs and within just a few weeks, my son started to make sentences. His own sentences and not just memorized sentences that he repeated. As the year progressed, some things improved, while some actually got worse. When the time finally came for us to see the specialist, we came prepared. I had notes from his speech therapist, notes from his More at 4 teacher, as well as samples of his art work, or writings would be a better description, my own observations, and questions we wanted answered. I tried to make everything as clear as possible so we could get some kind of diagnosis as I was terrified they would tell me that they just didn’t know what was wrong with him. Atypical Autism however, was what she told us, that he needed no special classes, normal kindergarten, and that by the time he was finished with 2nd grade there would be no noticeable difference between him and the other kids. He’ll always be a little quirky, a little bit weird but there will be no noticeable surface difference. This was, of course, the best we could’ve hoped for under the circumstances.
When I imagined being a parent, I pictured something entirely different than what it has become. Sure, that day I was happy with my son’s prognosis and I still am. My son is a brilliant, happy, loving, silly child with the most beautiful smile who loves to be the clown and make others laugh. I’m so proud of him and all of his progress and he amazes me everyday. Although prognosis wise we are very blessed, how do we make it until the end of 2nd grade? I’ll admit it; I’m lost when it comes to dealing with him. What do you do when you are having 20-30 meltdowns a day, he’s almost 5 and still not fully potty- trained, and you can’t really communicate deeper than simple commands, and you are glad that the gluten free diet worked for Jenny McCarthy, but honestly what regular person can afford it in this economy? What do you do when you feel like you have dredged up everything in you that you can to try to help and it just isn’t enough, and it will never be enough? I don’t have any of the answers to these questions. When we first started down this dark road, I came up with expectations, fantasies of how this would turn out, and like my childhood fantasies of motherhood I was wrong. I understand why the symbol for Autism is a puzzle. Nothing is ever the same, you really just try to find the right piece to make things work, and like so many puzzles we encounter, pieces are missing. You blindly search for them, but are still left with the glaring holes of an incomplete picture. My situation is good, and so much more hopeful than other parents who are wrestling with this, but I think what has really been the worst part of this is feeling alone. People just don’t understand, they mean well but at the end of the day they really don’t have a clue what you are going through. They never encounter the stares you get in the store when you are dealing with a meltdown from ignorant people who think they know how to be a better parent than you. “You’re just not disciplining him enough,” they say. They’ve never had to fight back tears at a park when a child comes up to you and says “Your kid is really weird,” and you drag your child, in full meltdown mode because he wasn’t ready to leave from the park because you are afraid you will say something to this rotten little child that is probably undeserved. Perhaps it is deserved, but you hate it when people make judgments about your child without all of the facts and you don’t want to be guilty of the same kind of ignorance; after all he could’ve had Tourette’s or something, right? Your friends, and family their hearts are in the right place but they really don’t understand. I think if the truth be told, not all Autism parents will understand because of the vastness of the spectrum. I saw something one time that said,” Autism: it’s not a processing error, it’s a different operating system.” and it really stuck with me because it is so true. A different operating system, a puzzle, however it helps me to describe this, no matter how alone I feel…my story is just one, just one story in the thousands of nameless, faceless 1 in 150 I keep hearing about. For every frustration I feel, every tear I shed, every failure in handling things, every battle I fight, every time I feel totally lost, every time I feel like I am not helping him progress I have a sunny, forgiving smile on the face of my son, my Autistic son and I find the strength to keep fighting. To keep trying, to keep living and to keep praying, to keep trying new things and I hope that my story will remind everyone who reads this to do the same. 1 in 150, we really aren’t as alone as we feel. No, being a parent isn’t at all what I thought that it would be, but really is it such a bad thing?
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God
Pulling on my jacket, I located my purse, cell phone, keys…. 
A.P. Sullivan
mrsnavillus
devotedspirit
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