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Holding
« Hiding in plain sight | Main | The Anger »
Monday
28Sep2009

EEG in captivity

My sixteen-year-old son, Rocky, is about to spend 48 hours locked down in a glass-walled hospital room while he undergoes continuous video and EEG (electro-encephalogram) monitoring. Constant parental supervision is required.

GAAAAAH! I don't wanna go! I! Don't! Wan! Na!

Let me emphasize that I am very, VERY grateful that Rocky is receiving this evaluation. Earlier this year, his teachers and I noticed that he was becoming spacier and spacier. His grades tanked. He began to struggle emotionally and behaviorally. I chalked all this up to the combined effects of autism and teen angst until I read a great book, Adolescents on the Autism Spectrum, by (my imaginary BFF) Chantal Sicile-Kira. She noted that 25% (!) of teens with autism have seizures that can interfere with learning and cause behavioral and mood changes. Aha! I got Rocky in for a preliminary EEG lickety-split, and the results were abnormal. Now he's having this two-day evaluation to determine if he has a treatable seizure disorder.

This isn't my first time at the EEG rodeo. I've spent many days in the hospital with my younger son, Taz, who was diagnosed with epilepsy seven years ago. It's a miserable experience that I liken to being incarcerated with my child without! a! break! for! two! days! straight! I've learned from past hospital stays that I cannot ever, EVER get caught committing a crime that would result in jail time. Just a few days in EEG captivity, I'm ashamed to admit, brings out the absolute worst in me. 

For example, no matter how hard I try to stop myself, I frequently dissolve in fits of inappropriate giggles at the sight of my poor child, who has to walk around with a gazillion multi-colored wires protruding out of a gauze turban that protects the electrodes glued to his scalp. I know this is wrong of me, but I can't help but think that he looks like something out of a really bad Ed Wood movie.

And it gets worse. More than once, I -- well -- I broke wind in the presence of a nurse. (What can I say? That hospital food is a gastric nightmare!) Then, I caught her eye, nodded in the direction of my innocent child, and mouthed the words, "Poor baby has bad gas." Blog forgive me.

I blame my insanity on the nonstop video monitoring, which totally messes with my head. At first, I always feel like I'm being watched like a hawk for signs of Munchausen-by-Proxy disorder, where the mom intentionally makes her kid sick to get attention from others.  As a result, for the first several hours of the evaluation, I'm afraid to get within 10 feet of my child, and I compulsively keep my hands out where they can be seen at all times.

But then I start to worry that I look too cold and distant, like the so-called "Refrigerator mother" who was blamed for causing autism back in the 1950s. I become intensely self-conscious, moving around the room like a Stepford mom-bot with proprioceptive issues.

By day two, I am a cowering mess. I try to hide in the camera's only blind spot, and I keep expecting white-labcoated scientists to burst in and try to coax me out from the corner with cheese. Paranoid and bored and cabin-fevered to the limits of my sanity, I actually start wishing my kid would have a big ol' blue-lipped seizure already so that the EEG techs will declare that they have enough data to send us home early.

With today's EEG, I am hoping I can atone for my past transgressions. Here are my goals: 

  • I shall NOT giggle immaturely at Rocky's gauze-and-wire turban head, even though his thick, three-inch Jewfro will necessitate a turban *snort* as swollen as a ready-to-burst Jiffy Pop tin.
  • I shall take responsibility for my own bodily functions (note to self: avoid the hospital's bean soup).
  • I shall act naturally on camera. After all, it is my son, not I, who is the focus of the video monitoring. Yes, I shall just be me and treat the whole event as good practice for the future, when I have my own reality show (as we all undoubtedly will someday).
  • I shall NOT wish seizures on my son... even though I sort of hope he does have a seizure disorder, the kind that can be successfully treated with medication that miraculously eliminates all of Rocky's attentional, academic, emotional, and behavioral struggles. (What? A girl can dream.)

 Wish me luck! Let the captivity begin.

Reader Comments (15)

BEST of LUCK! xoxox

September 28, 2009 | Unregistered CommenterAng

How's he going to keep himself from jerking off for 2 whole days?

September 28, 2009 | Unregistered Commentermamaedgefan

hugs to you both!!!

September 28, 2009 | Unregistered CommenterMichelle

Good luck to you both.

September 28, 2009 | Unregistered Commenterfurious feline

Ugh -- nothing worse than spending days in a hospital while your child is hooked up to video telemetry. All right, there are probably many far worse scenarios, but I concur with you -- it's captivity. I'll think positive thoughts for you on all counts!

September 28, 2009 | Unregistered Commenterelizabeth

Ooh, I feel your pain. BTDT a couple of times with my son (he's almost 6). TORTURE! I'd rather be locked up in solitary for a week. Seriously! Good luck. More importantly, I hope you get some useful information which leads to answers that will help your son.

September 28, 2009 | Unregistered CommenterNiksmom

Good luck to you! I know the feeling of wanting to identify something that YOU CAN FIX.

September 28, 2009 | Unregistered CommenterEmily

I've also heard/read that 25% figure, and it scares me. I'll be thinking of you, hoping all goes well. xoxo

September 28, 2009 | Unregistered CommenterTanya @ TeenAutism

first of all, someone stole my handle .. but um, anyway ..

wishing you all the best and still in awe that, as always, you did the research, learned more than the drs and knocked them over the head to get what your boy(s) needed.

good luck!

September 28, 2009 | Unregistered Commentertherealmamedgefan

Why shouldn't the drug addict father be expected to stay one of the days? Why do you let the loser get away with taking no responsibility?

September 28, 2009 | Unregistered Commenter?

Really hope it goes well - good luck!

September 29, 2009 | Unregistered CommenterCasdok

Mama on the Edge - I think I would recognize your writing anywhere!!
Love your article - no comment re passing gas - that's why we have a dog - so we can blame him!

This is a GREAT blog site ? Who runs it?

Love to hear how it turns out for your son, let me know!

Your BFF (today I am not imaginary)

September 29, 2009 | Unregistered CommenterChantal Sicile-Kira

My son did two or three 10-day stints on telemetry. It's been 15 years since the first time but I remember that trapped feeling like it was yesterday. The first few hours felt like we'd fallen into an alternate universe.

All these years later I know those experiences gave us more than they cost us. May the same be true for you, many times over.

September 29, 2009 | Unregistered CommenterJerri

Mama Mara, Elmer asked me to go back to see why Rocky was having an EEG/. He had not heard of refrigerator mothers and was amazed. We send our best wishes.

October 1, 2009 | Unregistered CommenterAnonymom

you are SO FUNNY!!!! this cracked me up. and made me clasp my neckline in codependent angst. when will it be over?????? and when will we know the results?

October 2, 2009 | Unregistered Commenterkyra

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