Military Special Needs Network

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The Awakening

In 1990, when the Robin Williams/Robert DeNiro movie Awakenings came out, I had an epiphany: I wanted to help people; 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.

14 comments on “The Awakening

  1. mostlytruestuff
    November 29, 2012

    This made me weep bitterly. He’s in there.

    I thought about this same thing when I saw “The Notebook,” I think it was. Every so often- a lot of times when he’s having fevers- Casey is SO much more lucid. It’s really something to watch.

    I almost want him to be sick so I can hang out with the awake Casey.

    • militaryspecialneedsnetwork
      November 29, 2012

      Isn’t that interesting, Lexi? It’s almost like Ted’s hard drive gets rebooted for these short periods of times…and then…the blue screen of death.

  2. Kim Robinson
    November 29, 2012

    Kelly, I am so angry for you. You need to get a longer EEG, try to get one in the hospital, or even better, one that they can do at home, try to find an Epileptologist around you, a neurologist who only sees Epilepsy patients. You described Emma when she was on Topamax. She was a shell, and her first neurologist didn’t give a shit. There are SO MANY antiseizure medications out there. And even with an abnormal EEG, that didn’t show seizures, that doesn’t mean is is not having them, it means he is susceptible to them, and could be having many that are just not being caught. I’m here if you need me 🙂

    • militaryspecialneedsnetwork
      November 29, 2012

      Kim – you have been so helpful. I cannot thank you enough. I am definitely going to be picking your brain about this. Thank you.

  3. akbutler
    November 29, 2012

    Kelly, I just want to wrap my arms around you and Ted and hug you. And then knock down the doors of the sleep study people and get you in. You have an army of people behind you helping you keep your mojo going.
    I just hate that it’s been this hard.

  4. Oh WOW! Sitting here taking in your post, I can not begin to imagine the range of emotions you must be going through. I’m stunned, overwhelmed, excited, sad…I’m sure you don’t need to read how I’m feeling. 🙂

    Riley started having complex partial seizures with the onset of puberty. He is on tegretol and it has worked for him. Can’t wait to hear how things go with Ted. Good luck!

    • militaryspecialneedsnetwork
      November 29, 2012

      Thanks, Diane. For the school nurse (never again will I be so dismissive of a school nurse. Lesson learned!) to so easily see what I have been begging others to see for years? I’m just, well, pathetically grateful that someone other than my mother believes me.

  5. Niksmom
    November 29, 2012

    Oh, love, I KNOW this story. I lived this story with my son’s four-plus year struggle with excruciating pain which woke him every night. Which hit him at predictable times of day. Which kept him from being able to function in his own life. Trust your instincts and don’t give up. There is an answer to be found…even if it’s only in the realm of those things so many doctors dismiss because it’s a statistically slim possiblity. You will not walk this walk alone. xo

  6. Jennie B
    November 29, 2012

    How wonderful to see that Ted. Now fight until you get to see him every day. You both deserve it.

    • militaryspecialneedsnetwork
      November 29, 2012

      Thanks, Jenn. Yeah. It’s time to go to war. Again. And, yes, he is so worth it. He deserves every chance at a quality life we can give him.

  7. blogginglily
    November 29, 2012

    this made me “misty”. everytime we feel like some rx has made a positive impact, we see it slowly disappear and then ramp down, like Sisyphus, but instead of the stone rolling back down the hill and coming to rest, it keeps going further down until the rx makes her “symptoms” worse than they were when we started.

    And nobody knows what drug. They just try this…then this…then this…over and over and over like your kid is some kind of fucking science experiment. And it’s not THEIR fault, because they don’t know either…and all you can do is just keep swimming.

    • militaryspecialneedsnetwork
      November 29, 2012

      They have told us flat-out that Ted is a Guinea pig. They have no idea what will work for him. We DO know that he metabolizes these meds so quickly. And, if there is a side effect, he’ll likely have it.

      But, I get your frustration. They just throw stuff at our kids to see what will stick.

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