Unearthed Jewel No. 9

It’s a blessing and a curse. It’s said to be a spectrum, and in my head I envision a spectrum as a rainbow from least to greatest. My son, is said to be “high functioning” and I am picking up that is now determined in levels of some sort. Haven’t read the latest on methods of diagnosis because I have been reading more on “Executive Functioning.” That seems to be where we are struggling presently in his adolescents. I remember bringing home my second little bundle of joy. He would sleep for about 21 hours a day…give or take. That might seem like a blessing to many, but it freaked me out. He would not nurse a lot, vastly different from my first born, and was losing weight. Scared and constantly referencing What to Expect When Expecting about sleeping habits to be again, reassured that some babies actually do sleep that often. This provided a sigh of relief for a few hours, but would later find myself again rereading the bookmarked areas to give myself some solace. My mother in law stated it was hard to bond with him due to his excessive sleeping, and I agreed. Looking back, that was the first indicator that something was off. As he grew there were other signs. Even before walking, he was flapping his arms and constantly kicking his legs while sitting in his car seat. As he began to walk we noticed more flapping, spinning, shaking his head, and playing with things other than his toys. He was constantly putting things on his head, unafraid of things he should be afraid of. Grabbing my hand and leading me to things he wanted and pointing. As we went into a store with florescent lights his behavior would change drastically. He would spin more, pick up things that were really inappropriately heavy for him. He would jump and preform acrobatic feats that were pretty amazing for his age. One day our house filled with company and he started jumping and throwing himself to the ground in ways that seemed dangerous and hurtful. He was both a dichotomy of unusual and extraordinary. He enjoyed jumping, stacking, and lining things up. His first words were concrete objects. Things that never changed. As we walked through any store or building, he would repeat square, circle, rectangle, and triangle as he noticed them. It could have been a bowl, a pizza box, tile flooring, or a triangle shaped potato chip, but to him it was the shape and that was that. That was concrete, never changing, and gave him comfort. That he understood. I remember knowing but not knowing something was off, out of sync. Having a bachelors in social work, and a masters in education, I had read all the things. Situational irony at its best. I accidently, subconsciously out of no where, told my sister in law that he was Autistic one day on the phone. I had not even consciously thought about Autism at that point. If you know me, you know that my sister in law and I are not even close. That word splurge still haunts me today. Was I ignoring my intuition? Finally, another family member who had an autistic child called me one day and said, “Sis, we need to have the talk.” She went on to explain that my second bundle was probably Autistic. Showed signs that she too saw when her child was about his age. I had mixed emotions. I had many to see why she was right and was rationalizing why she might be wrong. I was also in the midst of towering boxes because we had just sold our house. We were scheduled to sell our house and close on a new one the same day. When I mentioned to my pediatrician, I was told that I should not compare this baby to my first. That I was just overreacting. I scheduled an evaluation with the local program in our county. The social worker walked in. She was so pleasant, we chatted for a while. My littles in the room with us the whole time. I then asked if my second born should really be evaluated. She smiled and said, “Oh yes, definitely.” I know my face went blank and I shook my head. Not expecting such a quick and firm response. We had just been chatting, but all the while she had been observing. From then, the appointments and whirlwind began. Social workers in and out of my house, testing my son. My untrusting mother warning me about letting social workers in my house and forgetting I too had the same degree. It still was unnerving. He was qualified for services, yet when I asked if he was Autistic, I always got the same nervous laugh, and phrase, “we don’t label.” “We don’t diagnose.” I too, had said this to parents and clients as a teacher and social worker. Yet, I knew they knew the real answer. Just as I had filled out many forms myself so that a doctor could use it to “diagnose.” I was given a sea of appointment times to meet with my little one. All while I had my other motherly duties to adhere to with my oldest. I kept asking over and over if he was Autistic. What was he? Was he going to be okay? All I ever got was, “he qualified for services.” My favorite, that infuriated me was, “Will any of our kids be okay?” This one made me want to scream. I remember my perfect friend calling to check on me and asking some questions, to which I said, “I don’t know what is going on.” I didn’t, I was in a whirlwind. Overwhelmed was an understatement. Amidst the five appointments a week we were venturing to, and the employment I had given up to make it to said appointments, I found one more place to go. It was to a pediatric language clinic at our state university. It was free and hard to get into but God does amazing things, and so we got a spot there. The first day we arrived, the coordinator looked at me and said, “Yes, he seems Autistic and a lot of time these children are also intellectually disabled, but only time will tell. We will just have to watch him.” She was a truth teller, and was confident in her work. There it was….the whiskey….the hard, stout, truth. The whiskey truth that burns. My knees literally went weak and I had to lean against a wall to keep from descending to the ground. My first day there and was trying to not be that “dramatic mother.” We had our child tested privately and he was in fact, Autistic with Pervasive Development Disorder. Through my reading about Autism, I learned that oversleeping, those 21 hours of sleeping, was normal for children with Autism. My son is an adolescent now. It has been a journey, and one we are still on. There are so many stories, lessons to share. He is smart, he is playing a sport, and has more friends than I ever had at his age. We talk about Autism everyday usually. His friends are well aware. It has been embraced among his friends, and our family. Autism is a term of endearment for his friends and family. It’s an explanation for his comments, his stems, and his food choices…or lack there of. I have shouted it from the rooftops and been extremely open to him and others who interact with him. I did this because I would throat punch someone who looked at my son weird. I am a mother bear and do not apologize. Being open and saying it first, was my way of shielding him. What it is not, is an excuse for him to use to not meet his potential. It is not an excuse for him to be lazy, or rude. We are muddling through this. He still needs extra sleep. I see that some interactions or days take more exertion than others. He has learned that being physically active is imperative for his sensory integration. I try to keep it real with him. For example, when he was in second grade, I told him that while he was in school, he should not stem too loud or be too disruptive. If he chooses too, people may not understand, give him looks, or laugh at him. He has to live in a world that is not like him but understand that he can bring ideas and understandings that we neurotypicals can’t imagine to the world. While other parents were teaching their children the alphabet. My little one and I were learning that A is for Autism and all that entailed. It is a blessing because it is a part of him. It’s one of the ingredients that makes him– him. I love and learn from the way he looks at the world. It’s a curse because for him, it’s not always easy. A is for Autism and Amazing.