spectrumom

This has been a wild week, and it isn't even Friday.  Two weeks ago, we decided to stop receiving TSS services for Nathan.  I hadn't had any particular issues with the TSS, I just felt Nathan didn't really need it, and it was becoming intrusive to have a relative stranger in our house 5-6 hours every weekday.  Tomorrow will be our last day of TSS services. A week ago, we tried to wean Nathan down from one of his medications.  The prescribing doctor approved the reduction, and gave us instructions in case it impacted his sleep.  It did impact his sleep.  It also impacted his mood.  On Tuesday, without any warning his mood changed from his usual impulsive, headstrong, but generally cheerful to angry and panicky.  He would lash out without warning.  He bit his hands dozens of times.  I was afraid to let him more than arms length away for fear he would break something.  None of the strategies I had used over the Summer seemed to work, and I began to flash back to last Winter.

I'm pretty sure I'm hormonal today. I spent the day with Nathan.  Dad was off with a Boy Scout hike with Sam, and Gram kept Isaac.  So we took a trip about an hour North for pizza, bagels, grocery, Target.  Yeah, we're that far in the boonies that to get to all that stuff we have to drive over an hour. I played music on my iPhone for him.  First he asked for Coldplay.  We have Parachutes, which does not include my favorite Coldplay song, Fix  you.  So I asked him if I could play my favorites list.  Which is how I started crying. I put my favorites list together last winter.  I put in songs that gave me hope and fire for the fight we were in. And it was a war.  A war against the rage and despair that was consuming Nathan and contaminating all of the family.  It not only drug us into the depths with him, but stole our sleep and wrecked a lot of our worldly goods.  I wrote lots of stuff about it, so you can click back through my blogs from that time.  I don't reall

Getting the dog was a leap of faith for us.  Sam had always hated dogs.   He feared them from childhood.  He had loved them until he was about 2, and then a racing dog leaped over his head at a park, and that was it. Dogs move too fast, bark too loud, are unpredictable and dangerous.  Nathan followed in his frightened footsteps.  They both cringed whenever a dog was near.  But I have always believed that a therapy dog might be the right step for Nathan.  He could use cues that don't come from us and don't involve words for calming.  A dog that could keep him from bolting.  A dog that is not a hand on his, but still keeps him safe in a parking lot, a store, on a walk.  He resists our hands, does not like holding them especially when he's the most dangerous, most likely to bolt.  Not that I think that running is what he has in mind.  I think his mind is chaotic and a hand is one more overwhelming input.   But right then is when he most needs imposed safety.  And I have

I'm going to let you in on a secret. I'm not a funny writer. Astonishing, I know, for those of you who have been sniggering along to my posts. You were wrong all along. I want to be humorous. Truly. I tried. I read all of these blogs by other parents that are very funny about their lives with a side of autism. They have thousands of followers. I looked at my little score chart. The most people who ever even viewed one of my blogs was 51. That was the one about Blues Clues. I'm pretty sure those people got there looking for something actually about BC and thought "WTF?" So I think to my self "Self, this next post WILL be humorous. Or else." In a very threatening manner. But I just don't work well under pressure. So I write another blog about how I feel about autism. And our lives with autism. Which, while often real and raw, doesn't seem very funny. I think it's because I write for myself. More of a journaling thing rather th

For several years after our children were diagnosed, our thoughts were full of 'might have beens.'. 'We might have been celebrating a regular Christmas, not roping off the tree to prevent a pica-afflicted 3 year old from eating it.' 'My son might have actually been invited to birthday parties.' 'My son might have snuggled with me while I read his story. And he would have said "I love you too, mom."' If only they hadn't had autism. But they did have autism. And I read 'Welcome to Holland.'. And hated it with a fucking passion. Because autism is not like going to a biking cheese-loving country instead of pasta heaven. Autism is oftentimes more like going to a war-torn middle Eastern country with IEDs and snipers. Or being kidnapped from your yacht in Somalia. It often sucks. And I waited for that peace that comes from living in disability-land me and my kids now inhabit for years. And learning to be proud of every delayed

As a homeschooler, one of Nathan's lifeskills/OT/chores is the laundry. Putting it in the washer, hanging it out and sorting it. His TSS helps with this chore. Since I am out of the house and my husband is the stay-at-home parent/teacher I don't think about it all that much. But today I was talking to Nathan's TSS about shopping and I mentioned my Betsy Johnson bra. "Oh, you mean that black one with the polka dots?" Yeah. That's the one I meant. And that statement has bothered me all day. It's not that I'm ashamed of the bra. Most of my underwear is in good shape. Although I'm pretty sure I'll be throwing out any shabby looking ones pdq. It's just that it is one more part of my life that is not mine. I don't go around showing off my undies. Even though I hang them out, I tend to hang a bra between two jeans. You know, so I can pretend it doesn't stand out too much. I'm a haphazard housekeeper who, every few month

I was reading this blog by a special ed teacher about the ongoing controversy of cure versus acceptance.  I've blogged before about this topic.  Here was my reply to this post. I come at this from both sides. I have 3 kids on spectrum. My oldest and youngest are moderately and mildly affected, respectively. I love how they are (most of the time.) I feel no desire to change them into something else, only to help them along the path they are on. They are growing and becoming fascinating people. They have things they need to learn to cope with, more than some others. My middle son is a different story. At 11 he is severely affected by autism. Home schooled because he couldn’t learn in our local school. Bipolar, with rages that break things, hurt himself and others. I want a change. I work every day for a change. We medicate him to help control the intense anger and sadness that run and ruin his life. I want for him what my others have. I want a chance.

Tonight I was annoying Sam. Which is not hard to do. This time it was by singing the Blues Clues theme. Paul and I have been sniggering over the recent satirical movie trailers for Blues Clues and Dora , which is why the theme was in my head. And Sam was shouting "Quit quoting mom!". We tell him to quit quoting about a dozen times a day. So the irony is not lost on me. But I told him why Blues Clues is so important to me. How the first thing he ever drew were the clues from BC. How it gave us insight into the mind of our silent little boy. How he would choose the PECS for his favorite BC episode from the velcro strip on the TV and this was his first language. His first way of communication. And this is why Blues Clues is so important. "And now I play MindCraft." "Ye-ess..." And in a gentle, encouraging tone, as if talking to someone with especially slow processing skills, my lovely son said "Maybe someday I can teach YOU to play MindCraft, m