Friday, September 4, 2009

Outta the blue - a pinpoint of light.

Can someone please tell me what is going on in Zach's head? After today, I would say likely not. Went to the doctor to discuss the fact that Zach is appearing to regress again and his issues with not sleeping well, the spasms/ticks, loss of skills. I just realized while writing this that I didn't address motor skills- he is not using his fork all the sudden. As part of this mind numbing experience, I mention to the doctor that I was interested about knowing when an MRI is warranted. Mind you, this is a kid who had an anomaly on his EEG, at least 2 of 3 doctor's reading the EEG thought so. Anyhow, he described some stuff and then asked me what I was thinking when I mentioned the MRI. I asked if there could be inflammation in the brain? He asked me if I was talking about encephalitis, I said perhaps. He said that if it was encephalitis there would be symptoms like low consciousness. He then went on to say, "You know ...things that are very serious." Are you kidding me? Is autism not serious? Oh... I see autism is not medical. It's all psychological. Please.

According to the Mayo Clinic (anyone else out there think that naming some serious health institution something that sounds like a condiment is funny?) symptoms of encephalitis may include:

* Confusion and hallucinations
* Personality changes
* Double vision
* Seizures
* Muscle weakness
* Loss of sensation or paralysis in certain areas
* Tremors
* Rash
* Vomitting

C'mon - I am not saying it is maybe typically what you see for the rest of the population - but could there be something to this? He didn't care to pursue it. Will just have to make the neurologist do it. *sigh*

I just cannot let this get me down. I have to stay within a degree of sanity for Zach's sake. At least we have had a few things that have helped to add a little hope. I'll share the following with you for your reading pleasure.

Taken from an exchange between me and Zach's therapist regarding his recent lack of progress...

He surprised the snot out of me this morning. He slept well last night and ate breakfast . Anyhow, he was singing to himself, which made me feel a little better, especially with all that he has NOT been doing lately. Well, as he is singing to himself running around my bedroom - I hear "bladda bladda bladda ... .Winnie the Pooh, Winnie the Pooh... blaggadaggablaggdagga bloo bloo bloo, Winnie the Pooh, Winnie the Pooh, iwwee iwweee iweee". It was like me trying to sing a Stevie Nicks song - I never could understand her, just sounded like she had marbles in her mouth.

It made me realize that I really need to inundate him with media right now - books, videos, music. The stubborn sh*t needs to comply, but he also needs to learn and I think he really picks up on things in this other way.

Amazon.com would normally heed this call, but with finances being what they are, a trip to the library will have to do, plus maybe a used bookstore or something?

2 comments:

Natalie PlanetSmarty said...

Hey, do you have a wish list for Zach? Perhaps Anna could send something to him for his birthday :) As you know, I am not a big fan of TV, but if you say it works... maybe it does for Zach.

deb said...

(Connected through Melissa) Background: Jake is 8.5 years old diagnosed with CP and secondary autism. Videos have always reached him, excited him. One of the ways that he can have control is in manipulating videos on his computer or a handheld device. Baby Einstein and Blues Clues have taught him the most. Baby Einstein has helped with body parts, the alphabet and numbers (multiple languages), and identifying items. Blues Clues has been great for situations like going to the doctor. Jake would never allow a stethscope to touch him without screaming (not good when one of your issues has to do with your lungs). Blues Clues taught him to "take a deep breath" when the stethoscope touches him.

The shows have also improved his fine motor skills since he has to manipulate a mouse to control the show. We also use the shows to work on balance by making him stand on a bosu or sit on a ball in order to use them.

Hope that helps some. You can find our adventures, when I have time to write them, at http://movingtoazonedefense.blogspot.com