spectrumom

Today Sam came home from high school very upset. This has been his first week at high school, and it has been stressful for him.  He has done terrific!  He has kept up with the constant room and teacher change.  The practices that he did with this TSS have paid off, and he has gone from room to room to cafe to gym to chorus to class to class.  A total of 10 changes every day, not counting the bus.  But it did take a toll on him. We had made up two 3-ring binders, one for morning, one for afternoon.  Each had a folder for each of his classes, labeled.  Because I am anal and this is the best way I could think of.  But teachers provided a binder for math and one other class.  So one folder was redundant.  But he needed a folder for homework to come home with him in his backpack.  His TSS had mentioned it to me, but I had not gotten Sam to do it because I have not been home all week before bed.  Because his support staff changes five hours into the day (thank you PA Medicaid for thinki

A post I wrote in May, but never published.  It's unfinished, but I left it that way, since how I feel now is different and cannot be truthful to my thoughts in May.   Isaac was 6.5 years at this evaluation. Isaac was diagnosed with 'pretty classical' Asperger's yesterday. And I felt pretty good about the diagnosis. Unlike the first kid, whose diagnosis was like a kick to the head. Or the second when we were just like 'get it over so he can get the frigging services we need.' He demonstrated just why he was on spectrum during the interview. The evaluation was by a very kind speech pathologist, Beth Nottingham. I felt the Robin Hood connection was a good one. She first interviewed me about my concerns. And frankly, I was glad that it had taken us 6 months to get to this part of the evaluation (although I was very frustrated during the wait) because it allowed me to get my thoughts together about where we saw problems. And then, the ADOS. A very inte

I know so many parents of kids with disabilities worry about what will happen to our kids when they grow up. If we are not able to take care of them, what will become of them? In one way it is a good worry to have. I know this is an incredible thought! But I was reading blogs today from parents of kids with Niemann-Pick who have watched their children lose all skills and either have watched or are waiting for their kids to die. http://niemannpick.blogspot.com/2011/12/update.html http://gavinssafari.blogspot.com/ So I am glad that my kids are gaining skills, no matter how slowly, and have the potential for a normal life span. On the other hand, I wonder how Nathan will be? If we will be able to help him control the thoughts and sensations that overwhelm him and cause him to throw and break things and throw himself on the ground causing horrible bruises. If he will be manageable as he grows bigger and stronger. If we will be able to help him to adequately communicate his ne

Sometimes adults are wrong. Or, I think they are wrong. This can be upsetting. If this happens in class, I often have a hard time moving on in the class.  My body and mind get stuck on the mistake. But getting upset in class is rude and it keeps me from learning. It is important that I follow a few rules when people make mistakes. First, I must decide if it is important to the topic being discussed RIGHT NOW.  If it is not important to what we are discussing RIGHT NOW, I will wait until after class to tell the teacher.  For example, if the teacher says "Sam has sisters."  But now we are talking about George Washington, I will wait until after class.  But if the teacher says "George Washington was born in 1986" I know this is important to what we are discussing. Second, if it is part of what we are discussing, I will raise my hand.  When I am called on, I can say ONE TIME "I think you might be mistaken.  I think that (insert correct information her

Sometimes when I have gym I need to change my clothes. When I change clothes, I stay by my locker while I change.  If I need to pee, I pee after I change. Before gym I stand beside my locker or sit on the nearest open bench and take off my shoes, pants and shirt.  Then I put on my gym shorts and shirt.  Then I put my gym shoes on.  I put my regular clothes in my locker.  If I need to pee, I can go now.  Then I go out into the gym.  I never walk around in my underwear.  I never show off my private parts.  I change quickly so I'm not late to gym. After gym, I go to my gym locker.  I take off my gym shoes, shirt and shorts and put them in my locker.  I put on my regular pants, shirt and shoes.  If I need to pee, I can go now. I change quickly so I'm not late to class.  I go out to my next class. I never show off my private parts.  If anyone tells me to, I tell them "That's rude."  And then I tell Kim or a teacher what that person said.

Sam is grouchy tonight.  Probably just being a teenager.  But it brings up a problem he has had repeatedly - getting upset with a teacher or other authority figure because they made a mistake, or he assumes they made a mistake, and losing control when they refuse to correct themselves.  As he inevitably insists they do. Hours can be lost to this. There are a host of reasons why he has trouble with this.  - He needs adults to be right.  When they are wrong, his stability is in jeopardy.  How can he be safe, if adults don't know what they are doing?  - Things have to be right, just they do.  Information has to be correct.  It is a rule.  - He doesn't recognize his body signals that he is losing control, so the loss of control speeds down the rails until the inevitable crash occurs.  And he can't get back into control for a long time, once a total loss has occurred. Negative emotion packs a powerful wallop and causes that train to go so fast. - People (adults mostl

I have body parts that everyone sees.  Everyone sees my face and hands all the time.  I use my face and hands to communicate.  I communicate when I talk.  I communicate when I smile or frown or use other facial expressions.  I use my hands and arms for many things.  I write, operate my games, draw, put on my clothes and do many other things every day with my hands.  When I wear shorts, people can see my legs also. Some body parts are only for certain places.  I only take off my shirt at the pool.  Otherwise, people don’t see my chest.  Girls never show their chests.   I have body parts that are only for me or my doctor to see.  My penis and butt are private body parts.  I never show these in public.  I use my penis and butt to go to the bathroom.  As my body matures, I enjoy touching my penis as well.  But I can ONLY do these things in the bathroom and my bedroom when no one else is there. Sometimes I think it would be funny to show other people my private body parts.  But this

I keep seeing these Facebook 'shares': I'm afraid of a world run by kids who were never spanked and who got trophies for just participating. Well. I've discussed the spanking before.  It turns out it doesn't work for my kids.  And it was just a product of my own uncontrolled fear and anger. So, if you want MY opinion on that: I'm afraid of a world run by kids whose parents disciplined them with uncontrolled fear and anger. Now on to the trophies. My kids don't get trophies.  They don't get awards.  I sat through 2 hours of Sam's 6th grade recognition (like a graduation, you got the hot gym and the crying babies and the incessant speeches, but no gowns.)  I noticed the same 5 kids getting all of the awards.  Over and over. They are good kids.  I know some of them and they are great.  I really like them. But they get recognized when they're great (the star of the play, the soloist in band, the athlete that wins the game) and then th