MAX

I remember feeling exhausted and depleted when my husband and I went to Max’s eighteen month old well child check. Once again, we were asked a lot of questions pertaining to his development. We answered honestly. The doctor then dropped the bomb on us, ‘I’m concerned that Max could have some developmental delays and he is exhibiting signs of a possible autistic spectrum disorder’, he calmly said. I tried to listen and catch each word, but my intake seemed slow and processing those words were difficult because I couldn’t believe how this felt. It was very uncomfortable and Max was squirming all around as he was passed between our laps and given different toys. Somewhere between the doctor trying to comfort us with words of hope and Max digging his foot into my stomach to climb up me and out of my arms I could feel my eyes swell slowly. I was mad for not holding myself together and astonished by Trevor’s stability and even tone of voice as he asked questions. The doctor handed me a tissue and then my tears began to roll down my face. I kissed my baby boy as he still pushed against me to force himself away. It felt as though he was being taken away from me. Finally there was a reason for my depletion. Maybe his understanding of the world was a little askew. We all needed a nap after this, so we got ice cream. Over the last few weeks there are many recollections of things that now seem odd. This is because I am looking for them, so that he can have the very best outcome in our quest to provide all information needed to properly diagnose an autism spectrum disorder.



Before we were parents, Trevor and I spoke of the kind of child God would give us. One that was willful, strong and stubborn. This time, we were right. The first time I saw my sweet boy’s temper flare he was less than 2 days old when a nurse came in our hospital room and tried to wrap him in a bilirubin blanket in the middle of the night. He screamed so loud and for a long time even after my husband made her leave. When we nursed, he never really studied my face. I had read about mom and baby bonding, but my initiations seemed worthless. And he didn’t want to sit still for very long, even in infancy. His dad and I would move him from bouncer, to rocker, to mat, to play pack, to Bjorn. The circuit continued frequently throughout the day. If nothing worked inside then a trip outside for a walk seemed to always settle him. He cried, a lot, but not a colic cry, or sick baby cry. Just a cry to let us know he was unhappy with his situation. He just seemed unable to relax. I remember his body so tense, and his muscles always flexed. My husband was concerned enough about this that he mentioned it to the doctor. He quickly outgrew the bouncers, swings and various things we could offer. Walking was encouraged and he was strong, so he caught on quickly. He was getting too heavy to carry and he was large for his age. I always wondered why he didn’t make eye contact for long, or study any toys. I attributed this to his unique personality and gave my acceptance. When we would go to a restaurant our arsenal of toys and books were thrown on the floor. I just prayed each time that the spoon full of vegetables would not end up on the customer sitting next to our table. He loved boxes and containers with lids, and so we saved different containers for him to play with and watched as he unscrewed lids and climbed into boxes. There was always a very specific water temperature that was needed to keep him from crying at bath time. The first time I put a band aid on his finger he protested and ripped it off. The second time he did the same thing, but I held his hand until he fell asleep with the band aid still on. He hates stickers on his skin. I have been very surprised that a shinny, brightly colored fish sticker could be so abruptly discarded into a crinkled ball and dropped on the floor. He never walks… ever. He runs everywhere. I noticed him twirling around the room with his head up to the ceiling and thought nothing of it. When he flaps his arms hastily in front of his chest I am more concerned because he does this so often, for protest, in confusion, frustration, fear, and excitement. He screams loudly when someone new comes into the room. With Max nothing hurts. He might cry if he gets frustrated, but there are times he does things that hurt you in watching and he isn’t fazed by any pain. Many of the typical methods of discipline have not worked for him. A loud and stern voice, getting face to face and saying no while shaking your head does nothing to change his behavior usually. All of these efforts often end in headache and frustration. Light switches are a constant source of entertainment, and I often think what our neighbors across the street must think we’re doing when he flicks them on and off over and over. He looks at you, knows his name and can hear well, but he is on to the next thing when you’re just getting started to communicate with him. If you can hold his attention for any period of time it’s a major accomplishment. His nanny says he’s “busy”. Well stated. You want to show him, play with him and teach him, but his focus cannot be sustained. He climbs up on top of you when you begin to show him something. This sounds cute, but imagine this happening with each opportunity you take to teach and communicate with your loved one. I say ‘Mama’ and he repeats ‘Mama’, sometimes. If I say ‘Dada’ (something he used to say), he never repeats this. Despite being encouraged, he still will not point. A wave goodbye is very rare for him, though he has done so in the past, and still, everyday one of us leaves we wave goodbye over and over trying to get Max involved in this.



The second most frustrating part of this situation, second to not being able to have reciprocated communication between you and your child, is that his symptoms come and go. They seem to worsen after his immunizations and subside in degree and severity weeks later. When you mention this to medical workers you will not receive any sympathy or concern. As a matter of fact you get back the regurgitated versions of what they have read. The shots are completely safe and there’s no scientific link between autism and immunizations. I had a doctor tell me she never worried about this because she has the benefit of being educated. As soon as his pediatrician told us he was concerned for Max having this disorder he immediately assured us, without a word of the subject from us, that immunizations were not the cause. One thing we have going for us is strong instinct, and my husband and I both agree that the immunizations have something to do with it. If they didn’t cause it they most certainly trigger the condition. It’s also frustrating to have people come and evaluate to diagnose and openly admit that what they see in a few hours is merely a glimpse into what Max is capable of or not capable of. You begin to wonder, if they had seen him stacks blocks that day, like he has before, would the outcome have been different. They say that his development is that of a 10-12 month old, but tell us to only see that as measurement for the purpose of fulfilling scales and ratings for paperwork to ensure he gets therapy. It doesn’t mean much beyond that. What are these people talking about? Which is it, take it seriously or don’t take it seriously? In trying to comfort me you send me very mixed messages, and the last thing a mom needs is unnecessary worrying.



One thing I do know from this whole experience so far is to be less judgmental. When you see a family and a child is acting up don’t scoff at how the parents handle them. You have no idea what the child’s limitations are or what any of them have been through. When a child comes into the world and it’s up to you to take care of them, listen to no one else! Traditional parenting techniques don’t work for all kids. Throw away the how to guides. There is no manual on what to do because it needs to be created by you, from your experience and how you both understand each other. A child that is confused by his environment because his brain works differently does not need to learn tough love or self soothing before he learns trust and safety. A baby that can’t accept external texture changes does not need to be traumatized by force feeding or teeth brushing. There is an abrasive methodology in traditional parenting that we all can survive, but it doesn’t take into account individual differences and needs. There is something I can respect in this, because we learn how to cope as an individual and take care of ourselves. A big problem with the world today is that children don’t respect their parents or themselves. So I really ride the fence on this issue and for me, I will need to continually reevaluate my methods of parenting and the effectiveness I provide. In the end, when Max is grown up, I want to have given the lessons, wisdom and ability to allow him to thrive in finding happiness in life and live it well and long.