The last few months have been up and down to say the least. As mentioned before, school had a rocky start. We had difficulty getting our son ready for his early school day start. Often we would need to wake him up by 6am in order to get him alert enough to be at school by 8am. He would need help showering, dressing, and eating. He wasn't really responsive and almost always too tired to really be anywhere but home most of the day.
We received more insight into our son's condition when we met with his Neuropsychologist. She didn't provide any answers as to why he was progressively delayed, but she was able to help us see what his abilities were at the time due to his medical condition. We knew that his overall functioning had steadily declined, and I knew just from reading with him that he was really struggling. However, it was worse than we thought. Our son went from an average 6 year old to an extremely low functioning 7 year old. Most of the areas they were able to investigate showed that he was functioning much below the 1st percentile. I was shocked with the realization that he had declined that much cognitively in just 1 year. These results explained so much about him emotionally as well. We really needed to simplify things for him; his routine, communication, school, expectations, tasks, everything.
With these assessment results, we, along with his teachers, decided to shorten his school days. This would allow him to get a couple hours more sleep and enable him to be at school when he's more alert. This modification has been amazing. Our son appears to have more energy throughout the day, is better able to perform simple tasks to get ready in the morning, is more engaged during class, and is interacting more with other children. Everyone is so pleased with these changes in our son's abilities. It gives me hope that maybe we'll keep getting glimpses of how our son used to be. Maybe he'll continue to pull through all these layers of fatigue, medication and seizures to show us he's still in there.
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