This week my son saw an occupational therapist (OT) he had not seen for five months. He walked into the room, with which he is very familiar, and he talked nonstop for the entire 45 minute session. Some of it was nonsensical, colors scripting, but the majority of it was actual conversation. Admittedly, it was somewhat strange conversation about feeding boulders water and apple juice, (See my story in this book) but much of it was actual, here and now conversation.
“Do you want to go slow or fast?” she asked.
“Fast!” he answered happily.
“Fasten your seat belt so I can start the engine,” she replied.
She knows he likes to “pretend” that the swing is a race car and he is driving somewhere. When she asked him what kind of car he was he answered that he was a “hot rod”. They made car noises together. She swung him very high and fast. He loved it.
As she swung him, she asked, “Where are you going?”
“To [Town Name],” he answered which is a small town between here and there where he gets to look at his boulders at a little strip mall and gas station.
“Of course!” she responded, laughing. This was a carry over from the last time she saw him. “What will you do there?” she asked. “See the boulders,” he responded. She laughed. Then, he volunteered, “What do they drink?” and when she asked him what they drank, he told her “Apples and water.” (apple juice).
She put him through a cloth tunnel, where he carries pieces of a puzzle and puts the puzzle together each time he climbs through the tunnel. As he made his way through the tunnel, he would say, “It’s dark in here,” and she would tell him to keep going to get out the other side.
Overall, both of us could see the tremendous increase in his language, responsiveness and focus. As the session occurred in the late afternoon, he kept talking about how it was getting dark outside. Before the time change a week ago, he did not pay attention to when the sun went down or the change from day to night. He seemed to take it all for granted or not notice.
In the last week, he has been talking about the change from day to night nonstop. He says, “It’s getting dark out,” or “What color are the trees?” and then answering himself, “They are black!” His reasoning goes so far as to say, “When it is light, the trees will be green again.”
Now, this may seem all too simple to you. Let me tell you. This kind of language literally, makes me cry with joy. (not melodramatically, just a little teary-eyed sort of thing…) You see, before he had the EEG and we found the silent seizure activity, he was nonresponsive and oblivious to so much more of his environment. Now, a month after we found out, and started working to stop the seizure activity, my son is seeing, processing, acknowledging and responding to so much more of the world around him. It’s like he’s been given glasses and sees the world with a much sharper focus for the first time.
Thinking back, there were so many times I would try to point out something while driving. He would either not look at all, or not see what I was referring to. Now, he sees, and 60-70 percent of the time reacts and acknowledges. He can communicate his understanding. There is a very special bond that comes with that understanding between my son and I. The newness of the communication is not taken for granted – by either of us. By his looks and words, it is clear that he understands how much more of the world he is seeing and experiencing for the first time. It’s cool. It’s heart-wrenching and it’s beautiful.
I was excited to report it all to our neurologist at our follow up visit. When we went in, there was a new nurse who took us back. She wanted to take my son’s blood pressure and I told her we just don’t do that, but she said she had to try. Being as it was the “Autism Treatment Center” I deferred to her knowing what she was doing. My son was having none of it and thus began an hour and 15 minute meltdown for the duration of our time in the doctor’s office.
So clearly, we are not “cured”. We are not close to “cured”. We are improved – significantly. Despite the meltdown, even the doctor could tell that my son’s language had improved. As I’ve mentioned, there is an inability to stay still. He is wild, at times. Interestingly, the doctor told us that, because my son is able to receive and understand more language, it can be overwhelming for him at times. He is receiving but his processing may still be too slow to understand and keep up with it all. Thus, the result is an increase in anxiety that manifests itself in pacing or anxious behavior.
This is the next hurdle to work on. I’m hoping for more balance in his behavior and an evening-out of his moods. I will let you know how this second lag of the journey goes.
I have faith in our neurologist. He has already brought a new world to my son. For that, on Thanksgiving, we will have more to be grateful for than I could say.