Monday, October 27, 2014

This IEP Is Beginning to Feel a Lot Like ...

On Friday after school, the Services Coordinator gave to me: a big manilla envelope - 12 pages of a pre-IEP.
                                                      image borrowed from specialneeds.com

On Saturday I opened an envelope addressed to me; it contained results from James' CAPA test (the first to me I believe I have seen).

On Monday, while at work, two phone calls rang through to me:
 - The Behaviourist with clarification questions so she could bring recommendations to the table.
 - James' OT Therapist, full of encouragement for the tasks of which James was able.
    Who also notified me of his notes and the student OT respresentative, who'd take his place at
    the IEP and keep the meeting stable.

At pickup time on Monday, James' aide did share with me: funds were needed for a party; he was short on milk money; and he loved his music class and listened to Vivaldi.

Paperwork, money, presents, stress, get togethers, anticipation, trying to hold on to messages of hope ... this meeting is reminding me a lot of the holidays.

Sunday, October 26, 2014

Weekend Summary

James loves driving around town with us to look at Halloween decorations. He has a new favourite decoration to supplant the Splatty Witch: big black Halloween cats, preferably inflated.

James, his Dad, and I lay siege to his room today. Out came 2 large garbage bags of trash, a bag of outgrown clothing & shoes, and 2 bags of outgrown toys and books (to be donated to his preschool). Oh, and a rocking chair. In came another book shelf for all the books that had been tumbled about on the floor, precariously perched on some things and buried under others. James now has room to play. And get dressed. This only took the entire afternoon ...

Realization: eating french fries together with milk will now almost aways trigger an upchuck episode with James. Milk alone is not the trigger. French fries are tricky but he has eaten them solo and not been sick. Adios to this duo for a while.

Saturday, October 25, 2014

Adventure at the Library - Ahoy!

James, outside our library.
"Come on, James, time to get your shoes on. We're going!"
"Where we going?" (with reluctance - he's on his iPad)
"Where have you been asking to go all week?"

GASP

"The Liiiiiiiibrary!!!!!!!"

Happy dance ensues.

I wish I could tell you it was for the books. But really, it was for this. They have Eye Spy on the games computer at the library.

We do check out books too, for our weekly reading log. They don't get the happy dance, but they still get a bit of the shine from visiting our local library.

Some of the books we've checked out lately:


So far, Peppa's the favourite. So it goes.

Friday, October 24, 2014

IEP For Fourth Grade

James' annual IEP is next week, and so far I am relieved at the communication beforehand. It's rather organic this time around, and with a new team on a new campus. It's rather refreshing because they seem to be looking at James, rather than a standardized checklist.

t-shirt from zazzle.com
There was no issue with changing the date of the IEP (their request this time and they asked if it worked for me too), which right away made me feel better, There's been communication back and forth. When I wrote a note this week, asking to have a behaviourist added to the meeting to address the recent bathroom issues, I got a phone call 2 days later from the services coordinator to go over ideas she and the behaviourist had come up with and asking for input. I will hopefully get a look at a draft of the IEP before the meeting, which would really help.

AND: she shared with me that they have bought noise-cancelling headphones, especially for James, to help filter out noise and help him stay in the classroom and focus on his work. This, compared to the last 2 years? I think I've died and gone to IEP heaven.


Thursday, October 23, 2014

Throwing Back to Pumpkins Past

I was looking back through the pictures of the kids, visiting a local pumpkin patch over the years. Hard to believe these were taken 5 years ago!






And here are a couple that are 4 years old:




....

and then there's this year:




Wednesday, October 22, 2014

Diabolical Digestion (Not for the Queasy)

So we've been struggling still with James' digestive issues. After an epic visit at the medical office, involving a horrible howling meltdown and culminating with me pinning his head and four nurses restraining him to get a blood draw (two tries, because no blood appeared on the first stick) ... James came up negative for diabetes and positive for Celiac Disease.

I cried. I won't lie. Yes, I know it's always good to know what the issue is and we are lucky that there are now so many gluten free options ... It's another blow; another 20# weight to drag around and another endless series of trial and error while hoping for improvement.

Next step was a follow up with a pediatric GI specialist. Who is based in SF. Of course. Took a couple of weeks, but I scheduled a phone appointment. Which was interesting, because he saw the results and said the positive result was for a test with a 20% false positive rate and the more reliable test showed elevated levels, but not what he considered to be positive.

So, two options: (A) Bring James in to SF for an endoscopic biopsy for a definitive answer. (B) Retest in six months with another blood test. I totally went with B.

Option A entails me losing a day of work, James a day of school, and me transporting a car sick guy (who will be crying, because he won't understand why he had to fast this morning)  and putting him under anesthesia (after waiting around, checking in, etc.), and then driving back up in commute traffic.


Also, James' dad had brought home some probiotic powder, which I put into his yogurt squeeze-ups. They seemed to have a good effect. I also bought prune juice and started spiking his other yogurt squeeze-ups. The prunes helped things start to empty out. The vomiting stopped.

Until today. There's been some very messy, extended sessions in the bathroom both at home and at school. He has had a lot of gas. Yesterday, I had to pick him up early from school, as he kept using the bathroom and then whining about not feeling good. Lots of laundry. Lots of cleaning. At the end of today he kind of purged his system from both ends, thankfully in the bathroom here at home. The only reason I can write about it now is because James' dad cleaned it up.

Good lord, I hope tomorrow is better.

Monday, September 01, 2014

Constipation Constrictions, Encore

This latest all-stop constipation episode has been coming on gradually, in spite of my upping his morning Miralax dose in milk. He's stopped eating regular meals and claims he hates food. He wants a new James. The yammying and not feeling good have been taking a toll on James and the rest of us. Getting him out of the house is a trial and involves extreme, loud melt downs that are not typical for James.

Good news is that it's not as excruciating as other occurrences. Bad news is that his bowels are plugged with matter and air and he's good only while at home. So I have been looking up home remedies. So far I've tried adding probiotics to his yogurts, trying to get him to drink more water and less milk (which is always now spiked with at least a little Miralax. Tonight I added some Magnesium Citrate to his apple juice and he actually ate half a pb&j on whole wheat bread with plum jam. The pharmacy in town gave us some lotion that contains magnesium - I rubbed some on his tummy.

Next up: adding baking soda to some water -- supposed to be good for clearing air out of the system. He'll be out tomorrow from school and his doctor is supposed to call back with results from the epically screamy blood draw last Friday. Hopefully there will not be anything new to contend with.