• The boys and I

  • A Little ‘Bout Me

    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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"A rose by any other name would smell as sweet."

It’s been growing clearer lately that D is showing more and more signs of being autistic. He has Norrie’s Disease. Autism is known to be fairly prevalent (roughly a third) in Norrie’s boys. For the last 6 months or more I’ve gone back & forth every few weeks or so on his symptoms, first convinced he is clearly autistic then doubting the evidence before me. When we’ve approached his Vision Instructor about his behaviors and our concerns she always dismisses them by saying how similar blindisms and autisms are…

Well, about a month ago D obtained a new therapist of sorts. There is a graduate student getting her Masters in Behavioral Special Ed (?) who also aides at the county special ed preschool. D is in her Master’s study. Through her observations at his mainstream preschool (i.e. he never interacts with his peers) we set some social goals at his first IEP and she did a video taped play date with my girlfriend (who is an OT) and her daughter to discuss with her professor.

I rarely see D with other kids his age. We just don’t know any. But at that play date I saw behavior I have never seen before. There was hand flapping. A lot of hand flapping. And I heard a word used many times that I had also never heard before.


That would be the mower / blower / vacuum / weed eater noises that he joyously makes for sometimes hours on end. Sometimes up to 9 hours. Sometimes so long that I want to put an ice pick in my ear. But it makes him so blasted happy to do it that we let him and we smile because he is adorable doing it too.

D turns 3 on Sunday. On Monday he falls under the School District’s jurisdiction for therapy & special education. We will contact them to pursue an evaluation/diagnosis on the autism issue. Nothing like hitting the ground running. I think they are going to hate me. We are hoping to take him to the Autism Diagnostic Center in Fresno. Everyone agrees that he is “very high functioning” even if they won’t actually say they think he is autistic. However, the Drs around here have been known to give an autism diagnosis because that is what you want. I would like something a bit more reliable and specific than that, thank you very much.

Our day to day world of laughter and frustration with the Light Of Our Lives won’t change one way or another because of an “autistic” label. But an accurate diagnosis will give us access to a few more tools for his life-skills tool belt. Us too. And I’ll take all the help I can get.

I do have a question or two for those of you who’s kids are also autistic. Once their autism became obvious, was there degeneration or progression of skills and behaviors? Or is this as individual as the children themselves?

Socialization has long been D’s weakest area but he seems to be making great strides there. On the other hand, he reverts to the mower/blower noises far more frequently and asks repetitive questions continually and becomes quite upset if he doesn’t get the expected/desired answer. I can’t help wondering if the pressure of socializing is causing the other “comfort” behaviors…


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