Sunday, August 24, 2014

And finally - I bring you the NOW

I promised you an update weeks ago and clearly my follow through sucks.

The concise version is that Noah is doing so much better.

The longer version starts with Noah being discharged from the hospital after 22 days. He wasn't really better, he was just different. His emotions were back. All of them, not just anger. He wanted to come home. The next step typically would be a week or two of outpatient treatment, but he did a trial  run that went spectacularly awful for him and he refused to go back. So he jumped right back into school.

I had a meeting with the school before he went back and made many demands requests, most of which they put in place. It was interesting how they were finally taking Noah's needs and my concerns seriously.

Noah was back. He was happy. He had a full range of emotions again. But he was still so fast. Too fast. Exhausting to those around him fast. His speech, his body, his thoughts. All too fast!

But he was happy. And he hadn't had a single motor or vocal tic since he left the hospital. A lot of medication changes had been made and we were trying to keep him off stimulants because of the tics and the anger.

School was trying hard to work with him and help him be successful. They finally put regular/consistent movement breaks into his schedule. They put an exercise bike into his class room. Each kid was given a laminated pass kept at their desk to use if they needed a break. They changed the aid that was working with him from a stern grandmotherly woman to a young male. And they gave him his own bus to ride home in each afternoon. (Did I ever tell you about his afternoon bus driver and aid for the first part of his year? Oy, disaster.)

All great stuff. Yet he was still struggling. His point sheet that they use to monitor his behavior throughout the day was coming home with similar numbers as before the hospital. It was obvious Noah was trying, and the school was trying, but he was still struggling - behaviorally and academically.

At home things were better, but his speed was causing big problems. It really was exhausting being with him. He never stopped talking or moving. He had very little concept of where his body was in space, so things got knocked down around him all the time. He really struggled with Kiel too. Lots of jealousy going on there.

This went on for several weeks until one weekend when Rich was working. By 10am I was ready to lose my mind listening to Noah, especially how he was terrorizing interacting with Kiel, which meant Kiel as crying every other minute. So I caved and gave Noah a half dose of the stimulant that he was on prior to the hospital.

OMG People! It was like a magic pill. Within an hour he was able to have a real conversation. He was interacting appropriately with Kiel. He even told me that he felt better in his head, which was a first!

We sent him to school on that dose the next Monday and his teacher called midday to ask me who I sent to school because the kid that looked like Noah was amazing.

It continued for the rest of the school year. Just like that he was bringing home point sheets with 99's and 100's, instead of 75's and 80's. And even better he was learning again!

This summer I hired a college student to work with him 32 hours a week when I'm at work. It worked out very well and Noah enjoyed being with her every day. They played lots of basketball and went bowling almost every day. I had hoped they would spread their wings a bit and try some new things, go on some different adventures together, but Noah's anxiety is still an issue, and he preferred staying close to home or doing things he was comfortable with already. I did send both boys to a week of soccer camp (locally run, 9-1) in both July and August. Noah did well the first week, but struggled the second with his anxiety. Overall it was a good summer for Noah.

Right now it's the end of August and we have ten days until school starts. He's nervous about starting sixth grade, which he has told me several times. Soccer season has already started and he struggled going to the first practice but once he got into it he did fine. He did fine the next practice, but then fell apart at the first academy practice. Too many kids and the commands were too fast and too many steps. He was so afraid he was going to embarrass himself that he froze and refused to participate.

So that's where we are right now. Gearing up for school, worrying about his anxiety, hoping we can still keep soccer his positive place.

Maybe next time I'll write about something totally not related to Noah. How novel...



  1. Been wondering how you have all Brennan. Hope the school year starts of positively!!!

  2. Above should read, "been wondering how you have all been." Sorry for the typo!