I’ve racked my brain over and over about how to start off this first post. As a perfectionist at heart, I wanted dazzle, fireworks, jaw-dropping amazement. In short, I wanted perfection. Then it dawned on me, I use the word “I” too much.
Yes, this blog is about me, but it is also about my family and our journey as we navigate between the desires of being an “average/normal” family, and the reality we are actually living. Our oldest son (E) has Autism along with several other conditions that go hand-in-hand with it: Hyperlexia, Twice Exceptional (2E), Sensory Processing Disorder (SPD), Oppositional Defiant Disorder (ODD) and Attention Deficit Hyperactivity Disorder (ADHD). This grab bag of issues gives us good days and bad days. It’s hard on our whole family, but we try to remember that this brilliant boy also knows that he is different and cannot control some of these issues (as hard as he tries). He’s mostly home-schooled with a splash of activities at the public school.
Our younger son (C) is another child with “issues.” We are currently starting the process of figuring out what he deals with but, we feel fairly confident that he also deals with ADHD, sensory processing issues and possibly ODD.
I am hoping that writing about our ins and outs, our discoveries and our disasters, will offer a form of catharsis for me, as the primary caregiver, but also offer insights, ideas and support to others who are dealing with much of the same issues.
The start of this blog coincides with the start of a new regime of sorts in our house, as instructed by our son’s doctor. We are trying positive reinforcements and immediate rewards for good behavior, rather than always scolding and leaving E always in trouble. We are using less talking and more action. The doctor tells us that we will have to deal with it getting worse before it gets better.
Case in point: last night E was ramping up around bedtime, as usual. When instructed to start his bedtime routine, he refused. This is the norm, and we are hoping to make it easier with a new reward system suggested by E’s doctor.
How it works is this: if he completes his routine he can earn 2 points, if he does it right away or without being asked. If we have to remind him another time to do it, he only gets one point. Any reminders after that, he gets no more points. With this system he has multiple chances throughout the day to earn points. The points add up and can be traded in for rewards such as extra video game time or an extra story chapter to be read at bedtime.
Not surprising, he fought us at every step. He earned no points. This made him angry and his ODD kicked in. He started ranting and screaming that he hates me, wishing that he had a new mother. He started throwing small blocks at me. This is what happens when he is no longer in control.
As instructed by our doctor, I calmly informed him we could talk about it when he calms down and that I was going to shut the door until that time. This made things worse. He craves the audience of his tantrum. For a few moments we fought over the door being open or closed. Round and round it went. Finally I was able to keep the door shut. He starts crying. My heart rips open. He is still ranting, but he’s also crying. He’s angry and upset and he can’t even express why. I hate seeing him like this. He is such a sweet and loving boy most of the day, but these outbursts are almost daily. How do you not hurt when you hear them express hate for you? Even when you know they don’t really mean it, how do you not feel it? Well I felt it, tears came and ran down my face. E storms out of his room to rant in my face and sees me like this: sad and almost broken. He deflates. He goes back to room sobbing that he upset me, apologizing all over himself.
Dad is now done getting C to bed and steps in. He reads to E, puts him to bed and peace descends on house for a time. Time that is precious and rare. Sad and exhausted, I head to bed. Lights out, and hoping sleep comes.