I started this blog in hopes that somebody somewhere would read it and maybe help a child in need. I wanted to keep a log of the trials and tribulations that we go through in getting Bryce to connect and succeed in the outside world. I thought if a mother suspected her child had a problem she would find comfort in my words – knowing that at the end of the day it would all be okay – even if you had to look back in time and realize that. But, my problem is that when I am on an upswing, I find it hard to write the words to describe this journey. If my mood is all pastels then I am reluctant to go down a path that is going to change me to all darks. Thinking about the past and what we are doing now in present day for Bryce does change my mood and I had some very bad days last week and I have finally turned the corner, so I am not ready to go back there. That being said, I will tell a few things.
Bryce’s vocabulary was extremely limited and there was alot of “jargon”. There were days when I could not figure out what he wanted and this would in turn frustrate him. I recall one afternoon when he wanted a snack. I asked him almost every food we had and he kept shaking his head no. I felt so helpless that I could not figure out what he wanted. He saw my despair and he reacted to that because he was frustrated as well. It ended up we both sat on the kitchen floor in tears because we could not communicate. This went on for 30 minutes(not a lie!)until I figured out what he wanted. I relayed this to his teacher the next day and she said that we needed to find an alternative way to communicate. She asked me to write down EVERYTHING that Bryce would come in contact with: food, medicine, daily rituals so that she could make up pictures for those words. This is called the PECS system and it worked wonderfully. They used it at school so it was easy to work it into our daily lives at home. I then put these cards on the refrigerator and he could point to what he wanted. There were even cards for happy, sad, angry, mouth closed(which is what I used when he was screaming or out of control). Bryce was just over 3 years old when we started and within a few months he started picking up that what he did at school was the same thing he could do at home. What makes this so hard is that, I knew how I was feeling, but I would become so upset because I knew he had to feel 10 times worse. Having words form in your head and not being able to get them to come out of your mouth; seeing your mother get upset because she doesn’t understand you what torture for such a young soul. Not a day would go by that I wouldn’t agonize over what to do to make things right(still do). I knew I had a backbone and I knew I needed to find it because Bryce couldn’t help himself so I had to be his advocate and if I was going to do that I had to get my act together. The next step that I took ended up being the best for Bryce but definietly took its toll on me. This is where I stop for now, but let me conclude that as a mother you need to find yourself the greatest support system there is, because as the caregiver you need to be able to have the time to wind down and build yourself up again. Trust me.
