Thursday, May 10, 2012

Year in Review Part 4

The Evaluation.
I was scared. I was terrified that something would be "wrong" with my Cameron-Bear. See, up until this point, I thought my little prayer to God was answered and that he let my child live, but he didn't have any noticeable disabilities, so I assumed that he was "normal". I kind of felt like taking him to the psychologist was like "paying the piper". I knew he wasn't "normal". I knew he was more than JUST normal from the moment I set eyes on him.
I loved him with all of my heart, deeper than I have ever loved anything. I didn't want to find out how "imperfect" my child was, or how he didn't meet the standard of normal. I thought society expected me to feel depressed, and like junk. I thought the "normal" response to such news was supposed to send me into a tailspin. So, when the news of the evaluation came back, I responded, in a way that I thought was "normal". I told the doctor that I had suspected his differences for quite some time.
 http://www.hawthorne-ed.com/images/autism-asperger/h04000_h04030.gif

Here's how the evaluation went down: The whole family went. The baby was 2 weeks old and slept in the car seat. We showed up at the office. It was quiet. One other parent and a young school aged child were there. The appointment was at 2 in the afternoon. My husband showed up separately since he was coming from work. We were handed 6 surveys to fill out. 1/2 were filled out by him, the other 1/2 by me. We filled them out over the course of the entire evaluation, and lacked 1/2 of 1 survey by the time we had to leave. They gave us an envelope, told us to mail it back in when we get it all complete. The next day it was in the mail. They were lengthy, and asked the same questions, but about 15 different ways. Cameron had a hard time adjusting to the new environment, and was fussy as we were filling out the surveys in the lobby. He kept tugging on us to pick him up. Finally, he found a toy table and some activities to play with. As soon as he got interested in a toy, we were called back. A small meltdown ensued as we took the toy out of his hand and instructed him to go back with us. He fussed and fussed. We went back to another room... the examination room. It wasn't like a doctors office... instead, it had a couch, a recliner, a dining room table and chairs, toys, and a favorite of his... blocks. He saw that we were going to a "private toy room" and he seemed to calm.

There was a grad student and the doctor. They watched him play by himself for a moment. He was drawn to the blocks. They met us, and we watched while they evaluated him. The doctor asked us questions on his behavior. She tried several things to interact with him and to try turn taking games. He wasn't going to have it. She tried to sit him at the dining table and give him goldfish crackers. He fussed and his butt may have sat in the seat a whopping 3 seconds before he bailed and wanted to get down and play with toys again. She tried taking a toy and hiding it, and that stressed him to the brink of meltdown. She did really good at finding his "boundaries". The eval. took about 2 hours, then she did a final "exit interview" with us in a separate room, which seemed to be her actual office area. She confirmed with us then that he appears to be on the spectrum but that she needed to review the surveys and she would see us back in about 2-3 weeks to go over the results with more certainty. We left, and as we did, I loaded up the kids to take them back to the house. This made the baby blues I kind of had go into overdrive. My husband went back to work, and I wouldn't see him again until it was close to the kids bedtime. How was I to hold myself together? I responded the way I thought I was supposed to... like I had lost a child. Like my little 2 year old boy was dead. He wasn't though. I would revisit these feelings over and over for the next several months regardless of how I tried to change my outlook on diagnosis. People would say...oh, he is still the same kid you fell in love with... yea, that works on the surface. That attitude helped me "save face", but it didn't feel genuine. It wasn't until later that what I was really mourning was the death of MY dreams I had for him. We all as parents have these visions of our sweet angel being the next president, or a famous actor, or wealthy. None of us dreams about our child living his days out institutionalized or imprisoned. NO ONE. So, when you are faced with the reality that your child will be anything but "normal", you get really scared for the future.

Two weeks later, the eval came back. She went over it with us... all 12 pages. It outlined how we answered on our testing. It showed his "marked delays" and put him in a percentile classification. When your child performs less than 1 percentile in a certain criteria, it breaks your heart. Like not even mildly affected.... SERIOUS impairments.... there is no mistaking it. When you focus on the things he can't do, it will destroy you. When you stop looking at your child as a gift and a blessing and you start feeling like he is a curse and "damaged", it leads to nothing good. I am not gonna sugar coat it. I felt that way often although I would NEVER let my son or my husband know I felt that way. I did usually late at night, after my husband was in bed and the kids were asleep. I would lay there and weep. I was so sad I felt like my bones hurt. Like I was 100 years old and couldn't move to get out of bed. Inevitably, the baby would cry and I would gently pick him up and nurse him. I would try to push the statistics I had read on the internet out of my head, but as I would stroke the baby's hair and cuddle him and do my best to concentrate on nursing, I would find myself a heaping mess. My baby has 1 in 4 odds of having this too... what have I done to him? 70 percent can't EVER live on their own and hold a job. 80 percent of married couples divorce within 5 years of a diagnosis.... If this baby is normal, what kind of burden am I leaving him with after my husband and I die? I felt for the first time ever a rift between my husband and I. If the baby does have Autism, how am I going to handle two? I can barely hold it together for 1 child on the spectrum right now. I saw the effects it was having on our marriage and I was so beaten down that I don't think I even had the will to fight back against the negativity.  At this rate, I knew something had to change or I was not going to be alive much longer... and not due to suicide... I felt my health declining.