Being Present

So, getting up at way-too-early ack emma and driving through early commute traffic for 65 miles for a 1-hour appointment, reversing it, then going in to work can be a bit rough. But oh the benefits of a therapy that you can actually see helping your child! More on that later.

For now, some images of what you can see by showing up and being present:

All taken with my little point-and-shoot. It's the little things.

On the Road for Answers

We're back in SF again, waiting for our much-anticipated appointment for the biofeedback clinic at CPMC.

Guess where we're hanging out?

It's something of an adventure and much more relaxed this time around. For one thing: James can eat and is not facing a medical procedure. For another, over the past week, James has had some success eating and producing BMs on his own.

Because we both hate traffic, and have committments in the afternoon (work for me, a local appointment with a dietician for James), we got up very early and were on the road shortly after 5:30am. We hit some traffic, but not too much, and used the heck out of the carpool lane -- yes!

We watched the moon set over the Pacific, just north of Land's End. There was a moon path over the waters. Gulls and sparrows fluttered and flew over the sea and sands. We saw a parked school bus in the lot again. Then we headed up to the Legion of Honour, and watched the sun rise. Gorgeous.

Now we're almost ready to head out. James already drank his milk and ate a croissant and cookies. He is so much more lively than our last trip a month back.

We still have a way to go. I can take days like these though. Hoping for good things!

Reactivity Zone

James is still participating in weekly (well, not so much over the holidays) social communication classes. The program focuses on the Zones of Regulation and it is based on a fantastic premise and group of ideas to help kids learn to communicate instead of act out.

Part of a free download from zonesofregulation.com

Each week, James resists by saying he doesn't want to go. Almost every week he comes back, excited about the program and being with kids his own age outside of a school environment.

It's helped him communicate the emotions that get masked by smiles or a hanging head. A couple times we check in with him about how he's feeling and discover he describes himself as Red when we thought he was Yellow, or even Green. It's an eye-opener.

James is supposed to be starting a Speech program at his school that will dovetail with this program. I am not holding my breath though. James and his speech sessions at school is a whole other topic. Or three.

Traditions - His Voice

James had an assignment for a class project: choose a family tradition and write about it.

I discussed traditions and ran a few examples by him. He chose one and we talked about it. I did some Q&A on him and did some ghost writing but here it is, in his words:

 

James typed a bit but then stopped in frustration. We are working on typing on the computer with him. He gets frustrated because he's used to tapping and swiping on his iPad. I finished typing what we'd written. I chose the font based on an article I'd seen on the Read Regular website (a fascinating look at how font choice and spacing can help those with reading difficulties) and printed out the finished product. Then I asked James to get the printout and read it.

I thought he'd just skim it, but he read the entire thing aloud. At the end, he looked up, excited. Because he recognized his words. On paper. Just like a book!

And it did become part of a book - his class sent home a bound book of traditions, and James' was right there, along with everyone else's.

So proud!

New Year's Goals

Time to set some goals for the coming year 2015:

1. James needs to eat more to gain weight. Currently he is pushing 4' 11" and we're struggling to keep him above 60 pounds. He was 87 pounds last August. Not sure why he's decided food is evil. We have ruled out Celiac Disease and throat/stomach/upper bowel issues with an endoscopy. Which made James even more determined to Never Eat Again. Sigh.
       
2. Help James become more "regular." We're going to be trying biofeedback for that. In San Francisco at a Lucille Packard clinic once a week for the next 12 weeks. I'd say "shoot me now" but the truth is ... we are desperate for help with this.
        
3. Get James' speech back on track at school. It's pretty much not been happening over the past 2 months. Not happy about that at all. He needs help speaking. It's in his IEP.
   
4. Get Behaviourist help going. We're finally approved and not having to worry about hundreds of dollars in copays. We've started the intake merry-go-round. We need to finish it AND start the sessions!
   

                          Goals on a more normal level ...

       
5. Have James' birthday party BEFORE Easter this year. Bowling alley sounds good!
        
6. Send Thank You cards for Christmas this year (meaning for Christmas 2014 by the end of January). I know we all can do it. We should do it. We will do it!
         
7. Try to add Saturday Sidekicks back into our routine. That is one awesome program!
        
8. Breathe. Believe. Do.

Christmas Morning 2014

We all got to bed a bit late Christmas Eve, so I was able to sleep in until just after 6:30 -- yes!

James was first up. He was so excited: "Is today December 25th?" "Yes." "Is it Christmas?" "Yes." "Hooray!!! Angry Bird Season Christmas is open! Can I play my iPad?"

My, what Charles Dickens could have done with that one!

Anywho, we did all wake up a little after that, had some freshly baked scones, bacon, and eggs for breakfast (unless you were James, who had mini blueberry muffins and a scone). James did get excited with his stocking and presents:

James unexpectedly liked the snowman tic-tac-toe game. Not that he wants to play it with us, he just thinks it's neat and likes to fiddle with it. He also liked the hand rocket launcher ... until the fins started coming off the rocket. Then it was oh noes time and we had to hide them before he could calm down and move on to something else.

He really liked the Star Wars selection of bath soap - more for the figurine/bottles than happy anticipation of bath time, I'd say. He also liked the Star Wars reader book.

James does not like sugar or candy much. He does love the Trader Joe's organic lollipops - only the red ones, though! Santa's paper this year was SpongeBob & Co in Santa gear ...

  

He did like Fred from Big Hero 6 ... mainly because Fred dresses as an over-the-top monster who shoots fire sticks from his mouth. What is not to like?

James did a Happy Dance for his Robot and the Minion characters went on such a spin that I could not capture them on film. He also received a large amount of fabulous books!


Is he playing with some of these toys? YES! Not as much as I'd like to see, but he is playing. So that's a good thing.

Pineapple Express '14

What else happened in December ... oh yes - rain! After too many years of drought, especially after this past Spring that almost never was, we welcomed rain from a Pineapple Express.

I think we received some delayed water shipments, because the storm on December 11th dumped so much on us in a short while that roads, freeways, storm drains, and creeks were overwhelmed.

From Kent Porter in the Press Democrat

For the first time ever up here, school was cancelled for both kids/districts. Really, it was because the roads were compromised and people weren't sure about landslides later in the day. Regardless, I am so glad James does not take the bus. Some kids were waiting in the rain for 30 minutes for buses that never came - that's how close his school district cut it.  I actually called him in sick first, because his lack of eating after his procedure plus his anxiety over getting spots of water on his clothing just made staying home the better option that day.

James' sister's school waited too late, in my opinion. I was almost in the car with her before getting their cancellation message. Some parents had already dropped their kids at school and had to go back and get them. Oh, there were MANY unhappy parents that day ... which is why both districts announced that same afternoon that schools would also be closed the next day (Friday).

While I was glad my husband could be home with the kids, it was a bit sad to be the only one in the family who did not get a Rain Day off. Still, I did get an earlier start (and finish) than usual. I even got to do what the locals do when we get Rain -- head up to Memorial Bridge and take some pictures while sipping some Flying Goat coffee.

Memorial Bridge, under construction - yes, the workers were there & working - almost at flood stage.

On the railroad bridge, watching the park flood. haven't seen *that* in a while!