Mama Tiger

I couldn't even blog yesterday afternoon, I was so upset.

When I went to pick up R. from school early yesterday (to go to the dentist where he behaved AMAZINGLY well!), I found him in the principal's office wearing his headphones and typing text from a book into his adaptive computer. The principal then accosted me about why R. was refusing to do his work in the classroom and said, "well, if he refuses to do his work, then why is he here?" I'm looking at him contentedly typing into his computer on her floor and thinking, "if he's so utterly defiant, then why is he doing his work so happily right now?" Anyway, things went downhill after that. She kept pushing me to explain exactly what R. could and could not do and why, I kept telling her to read his file to get those answers and that I had to take him to his dentist appointment and why don't we schedule a meeting to talk about these things? I felt completely ambushed. She acted like this was just the last straw, when I had been so happy earlier that his behavior had evened out and he was not hitting, etc. any other kids this week.

The good news is that through my frustration yesterday, I did what I do best which is to call everyone I can think of...which led to me talking to a behavioral consultant today at our local Children's Hospital who deals with kids on the spectrum. D. and I are meeting with her in a few weeks, and she has already promised to serve as support for his classroom teacher and resource teacher. Plus, she already has some good ideas to keep him on task in the classroom.

Also, his teacher emailed me this morning to say that he was doing so much better today, and that they had figured out that he could dictate his writing to her (or another kid) and then have R. type their writing into his computer. How creative! And a much better solution than rushing to judgement and questioning the child's placement in a public school. Mama Tiger was out in full force today and yesterday...you don't want to mess with her!

**shout out to my friend, Sheri, for the Mama Tiger reference.

Brain Freeze

Today, R.'s brain was frozen. At least, that's what he said as I was trying to get him into his day at school. I had read on another autism mom's blog (who knew there were more of us?) that sometimes these kids have a problem with white paper...it's too bright for them. So, I asked R's teacher if she could put his daily contract on colored paper rather than white. She happened to have a few copies run off on light green paper, so we used that today. Hard to tell if it was helpful or not, though, since R decided that he wasn't having anything to do with writing today...not even the date and his name.

Sigh. I left him working with his former Resource teacher (that's what they call Special Ed these days) who always had a great way of making him laugh and getting him to do things when no one else could last year. She is a miracle worker. Let's hope that she worked a miracle on R.'s frozen brain this morning.

Tuesday Sunshine

R. had a good morning...no hitting, choking others, or taking off his pants at school (yesterday's fun!)...bravo! The only wrinkle this AM was an announced fire drill. He started worrying about that the moment they announced it on the intercom first thing. I told him he had his headphones on and they would call his teacher on the intercom before the big buzz. I left with my fingers crossed. His teacher emailed me mid-morning to say that he was fine during the fire drill...no small feat. I'm really coming to love his new teacher; I think she gets it.

Oh, and R.'s new obsession (and I mean a literal obsession...he mentions it all the time) is the release of the new Lego Star Wars II video game on September 12. Their website even has a countdown clock until the big release...how nice of them to accomodate R. that way! He's taken to checking the clock online every morning and he worries that it really won't be released on Sept. 12 as they say. My mom is tapped to actually get the game for him...he asked her this weekend on the phone. She says she likes his directness. No subtleties with this kid, nosiree!

Monday

This morning, R. slammed into the door at school first thing. Then, he rolled up in a ball and rocked back and forth on the floor when he was supposed to be doing his work. I couldn't even get his headphones on him. Finally, as I tried to ignore what was going on, he started taking off his pants (to get my attention? because the waistband of his underwear was bothering him? I don't know). I was so angry at him...

But, I finally got him on track, got his headphones and "hug belt" on him, and got him in his seat. I left and told his teacher that at least he was being quiet and sitting in a chair. A small triumph.

Update: I went to check in on him at lunchtime. His teacher said that he had tried to take off his pants again, and I was reminded that we need to get him larger underwear (maybe that will help? He keeps complaining of "rashes," which I think are just the waistband bothering him). He had his headphones on and was reading a "Captain Underwear" book (do you see a theme emerging?) in his quiet place. He had settled down so much; I was proud of him.

His teacher was concerned that he wasn't doing any work and especially since she will start grading them soon. I told her that I wasn't concerned with grades; I would be happy just to have consistent good behavior from him. I think she thinks I'm a strange parent that way! She also asked me if I had thought about how he will deal with middle school...I couldn't tell her that I think about this all the time...way too much. Instead, I said that we take it one year at a time (one day at a time!), and we'll deal with that when it happens. She's really trying to help R., and I do appreciate it, but this is all new for her. R. and the new teacher are both on the learning curve.

As I left R. at recess (which he hates), he was contentedly reading his book with his headphones on...sitting on the stairs...doing the best he can do.

He can draw, so why can't he write?

This is the question that I got from R.'s principal today. Not in so many words, but it was there underneath the surface of our conversation about her watching him draw this intricate picture of cyborgs and transformers battling the humans. In the moment, I had no answer for her. She and I have a history (thankfully, most of the bad stuff happened long ago), so I always have my guard up around her. After I left her, I thought of possible reasons why...drawing is free from expectations to produce or communicate, while writing is all about that. I'm sure R.'s anxiety level rises just thinking about writing at this point. I worry that they will take away his adaptive computer (fancy word for "laptop") and make him write. He just got the computer this week and is doing well with it. Sigh. Sometimes I think I know how R. feels--people coming at you from all sides. Sometimes I want to scream, "We're doing the best we can!" Sometimes I want to hold him like a little baby and go back to the time before we knew about all of this.

Day 9

It's 1:30pm, and I have yet to get a call from R.'s school. This is a good thing! Days 6 and 8 were bad this week, but Day 7 was fine. Let's hope Day 9 will be the day that he keeps his hands, feet, and other objects to himself. I've got an hour and a half to go (3pm is when his school lets out). Fingers crossed....

Update: YAY! Day 9 was a good one. He wore his headphones all day and did his work AND kept his hands, feet, and other objects to himself. We're celebrating tonight!

3rd Grade

R. started 3rd grade last week...I know the drill, so I met with his classroom teacher, his new Resource teacher, his new Art teacher, and the principal beforehand. Since he has been at this school since kindergarten (mid-way through that year), they know him. So, it seemed like everyone was on board. But it is so difficult to explain R. to someone who has never met him...it is an experiential thing! How can I explain how wonderful and smart he is, but how he will go on sensory overload for no apparent (to us, at least) reason and start attacking his friends? (already happened once this week). Or how he will interpret a gesture from another kid as a life-threatening event and then grab that child around the neck to stop him? (also happened this week). His new teacher is also new to the school, so the good thing is that she had no preconceived notions of R. But I could see it in her eyes when we talked...that look of "what am I getting myself into with this kid?" It is always so difficult for me to balance talking about R.'s limitations with talking about his strengths. Since his is a "hidden" disability and he is verbal, everyone assumes that he is "normal." And I want him to be "normal"...or at least functioning as normal. But I also want him to get the help that he needs when he needs it. It is such a fine line to walk...wanting him to be independent, yet knowing that he needs help.

A good example: when I took R. to get his haircut the day before school, I told the stylist that he hated the sound/feel of the electric clipper on his skin and near his ears. She chided him, "You're a big boy...you can't be scared of this!" What should I have done? Told her, "he's not scared because he's not a big boy, he's scared because it sounds like a jackhammer in his ear, you stupid idiot!" That's what I wanted to say, but instead I reassured R. that I was right there, that the buzzing sound would not last long and I held his hand throughout. I didn't want to waste my time or hers by explaining SPD to her. These are decisions I make every day when dealing with R. and the world. Soon enough, he will have to make these decisions for himself.

A change in focus

Recently, I have decided to change the focus of this blog, and talk about one of the biggest issues that I face daily...being a mom to my eight year old son who has been diagnosed with Sensory Processing Disorder (SPD) and Pervasive Developmental Delay--Not Otherwise Specified (PDD-NOS). This change in focus was born out of desperation relating to a very commonplace event...the start of a new school year. While my older daughter looks forward to the first day of school each year with anticipation and excitement, it is something that my son, R., dreads. For him, it means having a new teacher, a new classroom, a new set of rituals, routines, and rules...all of these things upset him more than you can imagine. So, out of my own frustration to try and help him (and as a writer who deals with life's issues best by writing about them!), I decided to use my blog as a place to vent my feelings, share our successes, and connect with other families dealing with children on the autism spectrum. It will be a place for me to record the absolute joy and the weary challenges of being a parent to one of the most amazing kids ever. I look forward to sharing my journey with you.