Tuesday, August 30, 2011

First Hiccup of Many! CB Program @ Boise Eloit

I forgot to post this earlier this month, but I think it is worth doing, just to show how the best laid plans are just that - plans. Also, to highlight something most of you know - SPED is a moving target, and nothing is written in stone (even that IEP you worked so hard on a few months ago).

Back in the spring, there were the exhausting collection of meetings regarding Olivia's entry into Kindie. The IEP was signed off on, and her placement was confirmed by not one but 4 people on the SPED team. CB Academic K-2 with increasing time in the mainstream class, at Alameda, next door to her big brother in the CB 3-5 class. It was obvious, easy, and agreed upon all they way up to Mary Pearson.

Then in early August I received the letter from SPED confirming Olivia's placement.
At Boise-Eliot.

This did not surprise me too much. We received a letter last summer confirming Isaac's entry into the CB program at Roseway Heights which is not l only in another cluster, but is also the class (with same teacher) where just a year prior he had the joy of two police involved incidents, an EMT was called, and an expulsion hearing was called on the then 1st grader. It had been agreed on that he would attend a CB program at the MUCH closer Alameda prior to this, so you can imagine how I reacted to THAT letter. A quick call to Mary assured me that Roseway was an accident and of course he was still heading to Alameda.

Olivia's letter was handled better by me. I did not melt down when I saw it and assumed that yet again, there was a miscommunication. I made the required phone call to discuss, and found myself arguing with an unknown woman about why my daughter should be at Alameda. I know I could have called Mary or Colleen Forbes to bypass this argument, but I was curious to see how this was handled by the placement department in general. So I told her the was a mistake.

"Oh no, it's not a mistake. Olivia is in the Boise Eliot CB class."
Her IEP meeting minutes clearly states she is at Alameda. It's been signed off on.
"Boise Eliot has just started a CB K-2. And Alameda is full."
Yes. With Olivia.
This was annoying me now. So I mentioned Isaac being at Alameda already.
"I am sure he will be transferred as well to Boise Eliot."
It's a K-2. He's in 3rd grade.
"Oh. I don't see him on the Alameda list."
Look again.
"found him. It's not noted that they are related."
Are there that many Sanchez-Bishops in PPS?
"Well, we have her going to Boise Eliot."
That was her argument. Her list was correct, Olivia's IEP and the fact her brother was in the same program at another school that was actually in our cluster was not. Yes, I know at this point, I should have gone over her head. But now I was irritated and itching to make my point.
So let me get his: you expect me to send my kids to the SAME program at DIFFERENT schools that just so happen to start and end at the same time. There is no way to put her brother at Boise Eliot since it is K-2 since he is a third grader. And that school is not in our cluster. And her placement has already been confirmed.
Silence on the other line. Followed by this oldie but goodie.
"Alameda already has 15 kids in it. Boise is a new program, and is not as full."
This is how we ended up at Roseway Heights. Alameda is full, Roseway has a much better ratio. Within 3 months Roseway was bursting and the ratio was crap. She was supposed to be one of the 15, put her back in Alameda.
"OK. If you are sure."
Yes, dammit.
"She's back on the list for Alameda, then."

Heart pounding, amped in that nasty mama-bear way. I hate being THAT parent, I really do. But PPS corners parents in this way. What do they expect? These last minute changes are too hard on families, not knowing who your teacher is going to be is hard on kids sensitive to transitions, we work hard on the IEPs and placements, and then 3 weeks before the school year everything goes haywire. And then they wonder why we call emergency meetings and rant away.

Monday, August 29, 2011

Goodbye MESD - Hello PPS

I cannot help but compare at this point, view O's entry into Kindie through an Isaac-lens. Early intervention was cake. Now the real challenges start.

I don't know how well MESD prepared Isaac for Kindergarten and PPS. Yes, he did well in EI. But it in no way helped him to manage being in the typical classroom at Sabin. The unstructured free time (recess, lunch), were fraught with anxiety. He could not keep up with the social aspects of his peers (he had, and still has, a speech impediment as well as a communication process delay), the simple act of cut-and-paste projects would bring him to tears (let's just say scissors were not his friend), and when the academics really kicked in after Winter Holidays, all of this underlying anxiety increased his delay and we lost the second half of kindergarten. And trust me, this aint your mama's kindergarten. They are learning things I didn't learn until first grade.

So as Olivia entered MESD, I was not expecting a lot. Olivia started EI a year and a half younger then Isaac did. Isaac was a 3.5 when he was diagnosed, O was two. She received home services until she was 3, then started in an EI classroom. It was a lovely and supportive environment, filled with staff that truly cared about her and her progress. And she has made progress.

But MESD did not prepare her for Kindie either. Not because of the EI staff - MESD is just not working, and the EI staff is so strapped and spread so thin, all they can offer is the outline of an education, with limited content. But this time, I am not deluded that it has. I insisted on a CB class to start with and we are slowing things way down so she can adjust (you can "insist" on things if your family has had a horrid PPS experience by the way. Very limited resistance when you mention things such as Pioneer, police, EMT, and expulsion hearing in regards to your first grader).

So here we go.

Wednesday, August 17, 2011

Chiari 1 Update: Better Than Birthday Cake

So after all of the anxiety, headaches, and tears (please note NOT from affected child, totally from mama), it has been almost anticlimactic. 9 days since cracking open O's little nut, and the biggest struggle has been trying to get her to take her antibiotics!

All went well. We checked in, doped her pre-surgery, watched her wheel away, and 90 minutes later were called into the recovery room where a very pissed off Olivia was groggy and demanding that the nurses remove her IV. They then wheeled her into the PICU where, for the next 24 hours she was monitored. She was very doped which went at times from sad to kinda funny in a "wow-I'm-a-bad-parent" way. Lovely nurses, lots of gifts from friends and family, and Olivia seemed to be herself. We then left the PICU and were wheeled into a normal room, and one hour later, signing Discharge papers.

And that, folks, was it. They had assumed 3 days in the hospital, we left after a little over a day. They sent us home with meds and an order to avoid standing water and trampolines for two weeks.

And results? It's a bit too early to tell. Her brain still needs to retreat from her spinal column into the new space that was opened up. This can take weeks. This will then reduce the pressure and allow spinal fluid to move normally. Only another MRI can confirm this, so one is scheduled for the fall.

Her eye is still a bit crossed, and the stimming actually seemed to increase for a few days, but then has tapered off a bit. It is still unclear if she had related headaches to begin with. Will the absence of pressure on her cerebellum alleviate these in the future? Time will tell. At this point I'm more worried about making things worse, or discovering that the surgery was unsuccessful and we will have to go back in again.
But it seems the more I worry the less goes wrong (and the more weight I lose!). I will accept that trade for now.

Saturday, August 6, 2011


Yes, you history geeks (and prehistory geeks) know what I am talking about - one of the oldest surgical procedures known to humankind, trepanning - removing part of the skull to relieve pressure to the brain. And if a neanderthal can manage to thrive after this procedure is done with the most rudimentary of tool(and skill) sets, than little Miss O will do just fine.

On a Friday we received the doctors recommendation of surgery. It was not a surprise and we understood the course of action. I guessed that it would be a few months away, and I was mentally prepared for it being as early as the holidays. Three days later we received the call - no, not the Holidays. Not even the fall. August 8th, and the neurosurgeon and altered her surgical schedule to get O in as soon as possible. That sense of urgency threw me a bit, and I have been edgy ever since.

I understand why. Sooner is better, especially since the pooling of cranial fluid at the top of the spinal column could lead to damage to the dural matter, the skin like membrane covering the brain. So I get it. I just wasn't ready for it being so soon.

And hear we are, three days away from the knife. Since that meeting with the Neurosurgeon, we have had an additional MRI, a scare from the insurance co, and a tour of the Children's Hospital at Legacy Emanuel. The second MRI was negative for lower spinal cord damage (yeah!), the insurance co sent us a letter to say that the surgery was elective and not covered by our insurance (was corrected within a 30 minute phone call and received apologies from Blue Cross, but was rattling), and the tour was loved by both kids - O loved meeting the nursing staff and seeing the playroom.

I am feeling ok. Not great, and I can feel the stress building in my chest. But we are prepared, have support, and know what to expect. I know she will be in the PICU the first day and night, then in a regular room. That we will be there 3 days. That there are 100 people there to make her feel better as she recovers, and that mommy and daddy will be by her side the entire time. We have great insurance and this won't be a burden financially. That she will be ready for Kindie in the fall, and Disneyland in October will be a good time for all. That unlike with so many families out there, there is a surgical procedure for THIS, there is an answer. And Dammit, that is worth a hell of a lot.

Perspective! Yeah!
Anyway, am making a video Diary of O, before and after. To see if this C1M has impacted her ASD. Will post a few as time goes on.