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In 1990, when the Robin Williams/Robert DeNiro movie Awakenings came out, I had an epiphany: I wanted to help people; I wanted to become a doctor. Fast forward a few years to a nursing scholarship, marriage and Navy life, a child, and adoptions. A degree in microbiology is as far as I got towards living my dream. Or so I thought.
This movie is about a doctor who offers “catatonic victims of an encephalitis epidemic” a chance to “awaken.” Watch the clip. I’ll wait. It’s five minutes out of your life, and I promise you will be better for it. Watch the clip and then come back to this story:
This is our life with Ted. He is not catatonic. But his basic level of functioning is that of these adults when they first wake up. Physically and mentally confused, must be taught and retaught daily living and basic educational pieces over and over again.
Except for the days he is “awake.”
This Tuesday, Ted woke up. He was awake, lucid and beautifully six-year-old-boy-like. Oh, God, he was awake. He did not stutter. He was physically able to do things, such as snap his pants and self-feed without ending up wearing most of the meal. His intelligence was astounding. He knew things. A lot of things. Things that Monday he was incapable of telling us. This Tuesday, Ted was truly alive. He had emotions, we had conversations, he blew everyone’s mind. I do not have the words to describe this – the movie trailer shows the exact sort of transformation we had on Tuesday. We hadn’t seen a day like Tuesday for months and months now.
Tuesday, we had our son.
Wednesday, he was gone.
Wednesday, Ted woke up. While he was physically awake, he was not lucid. His body did not work the “right way”: his fingers were unable to manipulate, his walking gate was different – his right leg drags slightly. He was clumsy and awkward. We had a dramatic decrease in eye contact, ability to speak, and his daily living skills…well…they were, frankly, gone. Back to those of a 24 month old.
Wednesday, Ted woke up and his day was like 95% of the other days in his life.
Wednesday, Ted woke up a shell of the Tuesday Ted.
Today, I had the awakening.
When I took him to school this morning, the school nurse greeted Ted. Ted, who is having a “Wednesday” type of day, stared at her, non-responsive. This is a script he knows and one we have literally worked on for years. Upon prompting, Ted mumbled, “Thank you.” Clearly, he had the wrong script running. I said, “You can say, ‘Good morning.'” Again, he repeated his thanks and shuffled to his aid. The same scenario was repeated just a bit further down the hall. The school nurse said jokingly to Ted, “You must still be sleeping this morning!”
My fellow autism moms will understand that my hackles were raised, my boxing gloves were on, and I was ready to verbally throw down. “He isn’t sleepy,” I wanted to rage, “It’s the damn autism!” Instead, I shook my head, and said, no. “No, he isn’t sleepy. We’re having an autism day.” Some days are like this, I went on to explain. Some days he is awake, and vibrant, and knows things. Most days are like this.
She looked at me and said, “Has he been having his seizures this morning?”
What. The. Hell.
I said, what do you mean? Why do you think he has seizures? I said we’ve tested him for seizures. The EEGs are abnormal, but do not show seizures.
She proceeded to say, “I thought he was diagnosed with absence seizures. You can tell, physically, when he is having these types of days. It’s plain to see.” She asked whether or not we’ve done a sleep study and when the last time we saw the neurologist was. I just stared at her.
What. The. Hell.
I’ve been begging, BEGGING and PLEADING, for a sleep study. I’ve been begging for an ambulatory EEG. The developmental ped said he believes that Ted is having sub-clinical seizures, meaning that they are there, we just haven’t been able to clinically prove them yet. The neurologist patted me on the head, and told me to stop going to WebMD. His abnormal MRIs and EEGs didn’t specifically indicate anything other than the fact that Ted was “different than the other kids.” We finally got a psychiatrist who is trying to help. We started him on an anti-seizure med, Depakote. Depakote was a good 2-3 month stretch of Tuesday-type Ted. Then Depakote tried to kill him, so we had to stop; thus, Tuesday Ted disappeared. Ted is now on his second anti-seizure med, Lamictal, which has done nothing for us.
Do you have any idea what it is like to know, to really know, that your son is in there? That he is alive, awake, has deep thoughts, feelings and words – oh, the words he had Tuesday! To know that is inside of his head – and to know that you cannot unlock it? That the pure frustration over his inability to, yet again, be able to do the tasks that you have been teaching for YEARS – for goddamn YEARS – is really over everything that is beyond his control? That he will know it and be able to perform it on a random Tuesday, but may not be able to express his thoughts to you clearly for the next three months? That there is a cognizant, thoughtful, loving human being trapped by his neurology?
I’ve been looking for his Awakenings drug for years. I’ve alternated between rage and helplessness, despair and hopelessness. I’ve got my mojo back now. Not only did his ABA see the Tuesday Ted that I have been trying to explain to people, I now have a school nurse – a school nurse! Who would have thought! – who notices these things. I have proof, dammit, that I am not crazy. That there are two Teds. I may never make an impact on a large number of people, like I planned with my dream of becoming a doctor. But. But. I have been tasked with awakening one special little boy. And I’ll be damned if I get patted on the head again.
Written by Kelly Hafer. Kelly is a Navy wife and mother to three children; 16 year old NT, 6 and 5 year old boys on the spectrum, and a bun in the oven. In her spare time, Kelly is part of the Military Special Needs Network Executive Board. You can contact her via email at KellyHafer@MilitarySpecialNeedsNetwork.com.
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