spectrumom

   Tonight Sam and I were discussing best and worst parts of his day. Mom: What is the hardest part of your day? ('Hardest' is a more acceptable word than worst.) Sam: Oh, at school or home? M: How about both.  What was hardest at school and what was hardest at home? S: Well, everything was good at school.  But I hate it because Nathan is always out of control! M: Oh.  How was Nathan out of control? S: He was screaming and screaming after dad put him to bed.  It hurts my ears! M: Ah.  Well, he does scream loud.  But I don't think he was out of control.  I think it was a way of regulating himself, like you do with walking up and down the hall. S: Well, it hurts my ears! M: It sure it loud.  I wonder how you could cope better.  How about your ear protectors? S: I could go to another part of the house. M: That's a good idea.  Or you could use earphones and listen to music. S: I could do that. M: So when N...

There is so much of me that is not embarrassed anymore. Walking out of the public bathroom with your pants around your ankles?  And you're 12? Eh. Falling on the ground in the grocery?  Not once or twice, but 6 times in one trip, all while screaming incoherently.  And you're 10? So. Walking up to a counter clerk and saying "You are SO BLACK?" Haha!  There's one for the blog. But there is one place that uncovers my dark side.  That part of me that does not want my kid to show how autistic he is. At his high school. The place where he goes every single day.  Where he acts his usual autistic self.  Where his need to control is stronger than his need to fit in. In other words, where the students and staff see his autism shining through more than I do probably.  Because he's under more stress there. So why, when I'm at his school, does it grate on my last nerve to see him do inappropriate things? At his chorus concert last week,...

I've been in this autism game what seems like a looooooonnnggg time.  12.5 years since the first diagnosis.  Of course, I was playing the game incognito for 2.5 years before that.   'Cause I didn't know what was going on.  And how the shit was about to hit the fan. And I see these poor souls hanging out in the low functioning autism boards with toddlers that have a diagnosis, and I think "What's up, homies?"  Because they don't know for sure that LF (whatever the hell that means) is where they really fall. What I do know is that you don't know what's going to happen.  The future happens with a little input from genes, a little input from therapy, and a lotta sweat equity from all the folks who believe in these little people. We started out with two autistic kids.  Because 3 weeks after diagnosis that's what we had.  One autistic toddler, and an infant-in-training.  Toddler had NO speech.  Zero, zip, nada.  Did not devel...

 Again, there is a huge difference between types of autism. And there seems to be no acceptable names for the myriad types. There is the verbal kind, the less verbal kind, the minimally verbal kind, and the non-verbal kind.  That divides them up into general categories, but does a lot less to tell you about them than you think. Then there are the secondary diagnoses.  How does OCD, anxiety, bipolar, Tourette's, ADHD, learning disorders and a host of other co-occuring diagnoses affect an individual's ability to function? When you toss that salad together with the verbal differences, you begin to see some of the nearly infinite variety. But now you add in personality.  Easy going, hard nosed.  Gets along with people/social (yes, our kids fit these personalities too) or more of a loner. And our kids don't come into a vacuum.  They are born into families with their own unique issues.  And communities with varied strengths. How good is the sch...

Sam was reading my talk to the Lion's club (the rough draft is from just a few days ago on the blog) when he got to the part about it being a "disorder." "I have a disorder?"  It was not a positive statement.  More like "Who the HELL said that?"" Thinking quickly I said "Many people say it is a difference.  A different way of brain organization and a different way of thinking.  Do you think that is a better way of saying it?" Yes.  Yes it was. And yes.  Yes it is. In Sam's mind there is nothing wrong with him.  And I pretty much like the way he is too.  I've kind of come to the conclusion that he doesn't frustrate me more than most other teenagers do their parents.  It's a little hard to tell, since all of my experience raising teens has been as an autistic spectrum parent. Sam has a hard time seeing his limitations.  (No, I don't really think he will be ready to drive next year.  And no matter how many ti...

This is a rough draft for a community talk I am doing: Autism is A disorder in communication, both verbal and nonverbal.  People with autism are often delayed in speaking. They have trouble with many parts of language.  Idioms are often hard for them.  They use and understand language very concretely.  Something is or isn’t.  Things are black or white.  You have one emotion or another.  So something like “laughter through tears” is confusing for them.  They have trouble with nonverbal language.  Recognizing emotions.  When they are standing too close.  When people are getting annoyed or bored.   A disorder of movement.  People with autism often move their bodies in non-fluid ways.  I can sometimes tell a person with autism just by watching them walk.  In spite of the fact that my boys all have very good senses of rhythm, their walking and running are awkward.  When the body has trouble mo...

When oldest boy was diagnosed with autism, lo these many years ago, my feelings were hurt. Actually they were shredded into tiny bits.  There were no guarantees that he would ever talk.  There was no idea of what his potential was.  There was no knowledge of what kind of behaviors we would face. There was no guarantee of how this would also affect my second child I was so obviously pregnant with in that exam room. Who we now know is even more affected by autism than his brother. When I sent him off on a school bus at 3 years of age, when we had wanted to nurture him at home, my feelings were hurt.  Seeing my baby get on that bus tore me to pieces. When we couldn't get physical or occupational or speech therapy at school or our community, except as a lame excuse for an aide, my feelings were hurt. When there was no ABA available , and I bought books and set up my own therapy, my feelings were hurt. When a kindergarten teacher told me she had taught an au...