Wednesday, February 09, 2005

Confronting the Blank Page

Right now I feel like I have sliver of a sense of Bud's world. I'm sitting here, a blogging neophyte, staring at a white screen that seems to be taunting me. My heart is racing. I'm in a state of flight-or-fight panic. I can barely stand to read the words I'm writing.

Bud has PDD-NOS, an autism spectrum disorder. We've been trying on this diagnosis for two-and-a-half years. Now it's like that sweatshirt-that-never-really-fit-right-but-is-the-right- weight-for-this-weather-so-I'll-wear-it-cause-it's-better-than-nothing. From what I have gleaned so far, the diagnosis of PDD-NOS doesn't really tell you anything about the individual who has it, because the "spectrum" plays out differently for everyone who has it.

For Bud, writing and drawing are challenging activities. He can hold the crayon and make the right marks, but he can't stand to look at the page while he's writing, so the marks are all disjointed and hanging out there in space.

Last week his teacher had a break-through. She went to hear Temple Grandin, an autistic woman who has written extensively about autism in a way that non-autistics can comprehend. Another teacher asked Temple about this not-looking-at-the-paper phenomenon (which I thought was unique to Bud, but I guess isn't.) Temple didn't miss a beat and suggested that the teacher start using cream or grey colored paper. Apparently, the light bouncing off the stark white paper is often too much for the sensory system of autists.

It never would have occurred to me. But now, sitting in front of an empty blog screen, I really get it.


Anonymous said...

I have never been on a blogger site before, so I hope I am doing this right. I am the mother of a 3 year old boy, who is in the final processes of diagnosis for what will more than likely be a PDD-NOS diagnosis. We are just waiting for the results from 14 genetic and metabolic tests, and the MRI. Next week he has his final test, the EEG, and then we will follow up immediately afterward. My son's name is Robbie and I have known somthing was not right with him since he was about 14 months old and he was not making any effort to communicate with me or anyone. At first, we thought he was only going to be a late talker, but then other things became noticeable. He has poor motor planning, sensory integration disorder, hypotonia in the wrists which causes a lack of interest in coloring or writing. Obsessive-compulsive behaviors that distract him from having social interaction with his peers. And now that he is 3, he is talking. He talks alot, but it is meaningless ranting about mechanical objects being on or off. There is no effective communication, just identification of items and people. Yet, he is very intelligent, he knows his numbers up to 40 and his ABC's. He potty trained with no problem at all. But he can't dress himself at all. I am having a hard time understanding all of this. I have never heard of such combinations of difficulties. I don't know what to tell family members who ask me, "What is wrong with him?" It is so painful and angering to me. I really feel like I need help to cope with this. And on top of all of this, I have another son who is just 5 months old. I feel like I am in a waiting game to see if he reaches his milestones on time. Well, everyone is up from their naps now so I must go. I enjoyed reading your blog. I feel like maybe there is someone else out there who could understand what I am now facing. Thank you,
Robbie's Mom

Tom and Amy Inc. said...

we are taking our 3 yr. old for a diagnosis in June. We have been working with ECI since he was 14 mos. old. he couldn't chew and seemed to not "notice" things /people like our dog. We beat the chewing thing. He didn't talk until he was 2 yr. 7 mos. Which seemed like forever, and then he just took right off. But he is now basically just echoing what we say. He has asked for a few things like a drink, but cannot answer yes, or no questions. The list is long. He is oving and smart and a great kid with these "quirks" This message may seem rambling ( & it is) but there is so much...

Christine said...

Just realized that we started our blogs ten years ago! You were one of the very fist people to comment on my blog (on the first post) -- and it seemed like magic to me then. I was so nervous to hit the publish button. Terrified. And then there you were, bringing the solidarity. And then the others followed. And it was a little bit of magic! I'm so proud of all of us!!!