spectrumom

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...

I've been reading this really excellent book about adults with autism by Nancy Perry.   It's taking me a very long time to read it.  Not because it's obtuse or technical.  Really, it's very readable.  Lots of interesting stories to highlight her points. No, it's taking me a long time to read it, because at the same time that I'm learning, I'm being forced to face a reality that I've managed to ignore. At almost 15 years of age, Sam has very major executive function deficits that he may or may not ever be able to deal with independently. Each EF deficit can be broken down into hundreds of practical skill sets that can be taught.  For example, we can teach Planning, Sequencing and Organizing for hundreds of different skills.  Following a recipe, taking care of an apartment, getting ready for school or work, writing a paper, shopping for groceries, personal hygiene.  The list goes on and on and on.  And it changes with each new phase of ...

As I become a teenager, I am becoming more interested in girls. I hear a lot about kissing, private touching, and sex. I see it on the computer also. My friends talk about it too.  I think about it a lot also. Kissing, touching, and sex are a normal part of life.  They are fun and make me feel good. However, some things I can do now and some things I should not do until I am older.  Some things are appropriate at school, and some in private. Before doing any of these things I should make sure that the girl I want to do them with also wants to do them with me.  Before I kiss a girl I should follow these rules:    1. I have known her for more than a month    2. We talk frequently and consider each other good friends.    3. I ask her if I can kiss her.    4. She says yes.    5. We are not at school during school hours.  I can kiss after school or at a dance. Before I touch a girl on the breasts ...

Our middle son has autism and bipolar.  He is fully able bodied.  But when things are bad for him (and this can last months) he is a danger in the parking lot if he bolts.  We got a permit for this reason.  We've never used it.  But I worry that someone who would never give two shits to hold a door for a disabled person will take it upon themselves to remind me what real disability is-the inability to see humanity in others.

Recently I have been posting on the characteristics my children share.  And share they do. But the challenges they face are often quite disparate. In my course of seeking answers, I have joined or been added to several boards.  Some for high functioning, some for low functioning.  Many of them are newly started, and the first posts often read something like this: "I'm glad this board was started.  I was on some other boards, and their children are so different from mine.  I couldn't understand their problems, and they couldn't understand mine." I often feel offended by this.  Because whoever was on that other board has a child like one of mine.  But whoever is on this board probably has a child like one of mine too!  I keep this offense to myself, because I recognize the lack of comprehension that goes into it.  Whether you have a child on Level 1, 2 or 3 on the spectrum (per the new DSM), you often don't comprehend the issues the oth...

Everyone has that one kid who gets into stuff and makes a mess. In our family, that kid is Nathan. The problem is, he is now twelve. And he's still that kid. His autism makes him so impulsive that, even on the odd occasion he considers there might be a consequence, it is SO worth it. Many times I will mention something, and, like I flipped a switch, he just does it. He had punctured a therapy ball with a knife so we got a new one. Thinking perhaps he had learned a lesson, I said "Now don't pop this one.". He walked over, grabbed a knife and POP. We lock up our knives, medicines (he overdosed on meds we stored in the cabinet over the fridge. Yes, a child resistant cap.), sweets, juice, cereal, tools. We lock the door to the upstairs when he is up. When he is in bed we lock the attic, bathroom and our bedroom. We have keyed locks on all the doors that lead outside. It is effing inconvenient to have the bathroom door locked at night when you get up to pee. ...