Monday, August 4, 2014

Did you just call my son the "A" word?

As I was sitting there watching the doctor give my 5-day old infant boy the "once-over", I couldn't help but to hold my breath and await to hear that everything was OK
"-Yep, he looks perfectly healthy. In fact, he is about the healthiest baby I've seen today. Most of the babies coming in today are jaundiced."
Ok, now I could breath. After all, that's what I had been waiting to hear all day. Although he wasn't sleeping a lot during the night, in fact waking on the dot every two hours round the clock, I figured it would get better as he got older. After all, he was supposed to be fed at these times anyway, and the nurse said he looked healthy. Contently, I drove home, unaware of what the future hold, but with a positive attitude. It will get better.
The months seemed to fly by and I seemed to feel more and more exhausted. My husband, doing the best he could to help out with the night time wakings, was starting to wear on him as well. We both knew that once he was awake, it was almost impossible to get him back into the crib without kicking and screaming. Having to get up early and go to work, we agreed that I would get up with the baby at night during the week, and he would let me sleep in on the weekends. I spent the nights on a couch in his room, afraid to almost get comfortable because he would wake up the minute I would start to relax. Things were not getting better. They were getting worse. He seemed so overly-sensitive to just about everything.
I was doing the dishes one day and he was in his playpen, when I noticed that he was just sitting there backed in a corner staring at something. I went over to see what it was. He seemed to be in some kind of a trance over some flashing lights on a ball. I called his name. He didn't even flinch. I kept calling desperately trying to get his attention, but he appeared to be totally unaware that I was even there. He picked up the ball and began mouthing it only now he was looking in my direction but seemed to be looking right through me. Horrified and not knowing what to think of this, I picked him up and just held him. Things will get better, I thought.

Around turning 18 months it was time for another checkup. I always dreaded going to the pediatrician because I knew I would have to go through another milestone checklist. That day I had no clue that my son would give the entire staff and people sitting in the waiting room some excitement. When it was our turn to go into the dr.'s office, I had to take off all of his clothes, with the exception of his diaper. Already struggling to get him to cooperate and the nurses twiddling their thumbs waiting, he decided he was going to have no part of this so-called check-up. He pulled himself away and took off out the door. I quickly chased after him with a milestone- checklist in one hand and his pants in the other. I eventually caught up to him in the full waiting room. I grabbed him by his hand and he laid down on the floor arching his back and shrieking as if to be in pain. I could just feel everyone staring and could only imagine what they were thinking. At this point I had to get down on my knees and scoop him up. He kicked and screamed all the way back into the office. I tried desperately to console him. To my amazement it was over as quickly as it started. The door-stopper spring had caught his eye. He sat there content flicking it over and over again. The nurse obviously thought checking his height and weight could be done later. My first thought was "well, duh!", but I realized the nurse had done nothing wrong and was trying to be considerate. Still out of breath, I replied "Thank you". The pediatrician entered and saw him flicking the door stopper. "Hi, I see you have found something to play with", the dr. said. He didn't look up, just kept flicking "spyoing, spyoing, spyoing". "Well, let's see how he is doing on his milestones, then we can try again to get his height and weight". Ha!, I thought. You go right ahead, doc. I'll just sit here and watch you chase a half naked child down the hall this time. Still reading his milestone checklist, I was wondering what the dr. was thinking. It couldn't be good since her smile always seemed to disappear whenever she continued looking at the checklist. "How are his eating habits?", the dr. asked. "Well, he is kind of a picky eater, and already being diagnosed with milk, egg, peanut and tree nut allergies, his food choices are limited. Overall, though, he is eating pretty good, but shows a preference to anything crunchy". "Ok, well how is he sleeping at night"? Ok, so the dark circles under my eyes don't give that one away. Some Dr. you are. "Well, I said, he might be waking every three hours now instead of two.
"Well, here's the deal, the Dr. said. "He is not meeting some of his developmental milestones. He is also displaying some autism-like tendencies. He should be checked out".
I felt a jolt of electricity run from head to toe. Did the Dr' really just call my son the "A" word. OK, hold the phone, time to find another pediatrician and get a second opinion. Although I knew in my heart that something just wasn't right with my son, it couldn't be autism. So much stigma surrounded this word. I became frustrated and hopeless. Driving home I kept my eye on that cute little boy in the rear-view mirror. All was forgotten about the little walk-about earlier at the Dr.'s office. He was sitting in his car seat with his Billy-Blazes sunglasses that he always had to have on before even considering going out the front door. So innocent, so cute, so unaware of the world.
It would get better.
After telling my husband what the doctor had said, he too did not believe his son to have autism. It couldn't be. That night I was obsessed with finding an answer. I used the time he was asleep on the computer. Expressive language delay. Yep, that looked good, but then again so did semantic-pragmatic disorder. The beauty of the internet, I thought. You type in a couple of words and you will get an answer. As a matter of fact, you'll get so many "right" answers" that you can basically choose whichever one sounds good. Autism did not sound good.
I had tried previously to enter him into ECFE class thinking this would give him a good chance at socializing and developing new skills. After the first class, I remembered how tired I felt just keeping up with him, trying to keep his attention on something for more than 2 seconds. I thought it was too early.
It would get better.
Some time went by and I was determined that this time I would be better prepared. I enrolled them at ECFE again. Little did I know that this would be my turning point. While talking with the ECFE teacher, I watched my son "appear" to play. Only upon closer looking I could see that he wasn't playing. He was picking up toys, fiddling with them, dropping them and moving on to the next object of interest. Though he appeared content doing this, he was not at all showing any interest in the other children. Then came circle time....I tried to coax him into the circle to sit down beside me. First he just shrugged me off. I persisted. He gave a loud shriek and kicked me. I immediately picked him up thinking he was not going to win this one and brought him over to the circle kicking and screaming. He would not sit still. He kept hitting and kicking me until I figured we had to leave not to disrupt the rest of the class. Although, it was obvious from the other parents' glares that we had already disrupted the class and were taking away time from their "perfect" children that were sitting quietly next to them. While carrying him in the hallway he swung and hit m right in the nose. I found a place to sit with him, sat him on the bench and checked my nose to see if it was bleeding. Thank god, it was still attached and no blood. I sat down next to him and didn't say a word. Just watched him acting totally unaware of the event that had just taken place. I couldn't take it anymore. I was biting my lip. This was not the time or place to breakdown. I wanted to leave never to do this again and at the same time realizing my son desperately needed help. The ECFE teacher came out in the hall. Exhausted and still trying to fight from breaking down, I listened as the teacher told me how important it really was for my son to keep coming to ECFE and that if I was ready to get help for my son, we could be referred and get the help we needed. This is what I needed to hear. Up until this point, I had felt pretty confused about what to do. I went home and cried. It will get better.
Within a week, their was a case coordinator and an Early Intervention teacher in our home observing my son, explaining that he would be assessed for services through psychological, speech and other evaluations over the next few weeks. Then they would come back and go over the results. She slowly started feeling a little more relieved. Her son was finally going to get help. With a little more concrete information, I was ready and able to conduct more thorough research online. They all pointed to one result - Autism. We quickly decided that in order for our son to get the help he needed, we needed to put aside any negative feelings we had towards this word, and for some reason, it was a little more easy to do this time. It was still our son no matter what. It will get better.
The next year was spent on educational and medical testing to get the "official diagnosis". In the mean time, our son was receiving early intervention, speech and occupational therapy in the home. Our son steadily progressed. Through the use of pictures and other visuals and some sign language, he appeared to understand that their was a world out there. Less tantrums, more speech, more socializing, more understanding.....more laughing. The best day of my life was when I put him to bed one night and he signed " I love you".....and slept all night. After this, I decided that my goal in life is to see the gifts that children with autism give. To turn ignorance into interest, and interest into knowledge. And from now on if anyone ever calls my son the "A" word, it will be nothing short of "awesome". It does get better.