SEPTAP Meeting Tonight, and the Rumor Mill is in Over-Production

Tonight is the last SEPTAP meeting for the 2010/2011 school year, and true to form, the rumor mill is spinning like crazy. Oh, to be fair, it is an environment created by the tight-lipped culture of PPS in this time of flux. Budget cuts, changes in programs, and shifting staff does not lead to an open environment for the Powers-That-Be, and they know that whatever decided, someone (let's be honest, multiple someones) will not be happy.

I won't fan the flames here, but I can almost gurantee this little tid-bit - nothing will be confirmed by the speaker tonight. Simply, even PPS won't know for sure on any thing until this summer, and the information wont be shared with families until, say, August. History is the model here.

So a moment to kevtch. And a point this girl will be making tonight. These are kids with a lot of transitional issues. We as parents do our best to prepare them for this, and the more time they give us to do so the better. Telling us 3 weeks before school is NOT enough time. Decisions need to be made, plans need to be changed, and IEP's might need to be updated (dammit!).

ENOUGH. Update tomorrow. And I will be posting the a resurrection of the SEPTAP (Special Education PTA of Portland) Newsletter to all interested parties starting next week (and coming out every month, summers included).

Oh, Kevtch #2: Did anyone else know that NIKE sponsored an Autism Sports Day last Sunday at their campus? How is this information not posted on the ASO or Autism Speakes websites?! Made a note of it for next spring, will make sure way more people know...

Year 5 Panic Attacks

Never underestimate the Power of a Panic Attack. I KNOW this. I know this and totally underestimated it again.

History: Isaac had a rough year 5. He was mainstreamed into Kindergarten, did ok for the first few months thanks to an aide and a typical friend that helped him, and when both left the school around the holidays, the carefully constructed world he was supported by fell to dust, and Isaac joined the bits and pieces on the ground and just could not get back up. Anxiety rampled, our ability to recognize the depth of what was happening just wasn't working, and it ended with a series of panic attacks that took over a year to end. Roughest year of my life so far.

But O has always handled her anxiety, if not better, than quieter than Isaac. I have recognized for a year now that when Olivia starts to become overwhelmed and panic sets in, she hides. She might flee to an adult, or cry to handle it, but it wasn't too serious. Then she turns 5 and it gets all really serious-like (hey, at least it's predictable).

The nuts and bolts of it are that there are two things that upset Little Miss O. Babies, and crying. Now, I know that those are fairly related, so you would think that when I we are at a friends house who just had a newborn and the newborn starts to cry, I would immediately go on alert and help her deal with the stress. Becuasee that is what a good parent would do, right? I wouldn't be chatting with someone in the kitchen with a glass of wine in one hand, oblivious. Right?

Instinct is an amazing thing. It wasn't only a moment, I am sure. Then something kicked in and I started to look for her. Was she in backyard with her dad and her friends? Did she retreat to a bedroom or a bathroom, door closed? Did she make her way down to the basement? I thought I was being calm and cool, but something maybe in my tone of voice or expression sent everyone else looking too. I am sure it was only 5 minutes that passed, but when I panic, time shuts down. I feel like a block of wood, a robot devoid of emotion.

Finally, my brother walked in and said "Stacey found her". I walked out the front door, and there they were - Stacey walking a tiny peanut of a girl from a solid 2 blocks away. O was found down the street, sitting on the front yard of a stranger's house. Waiting.

How I felt (shocked), and how I reacted (numb, totally numb), was typical me. That is how I handle my own stress. I did not freak out. I just asked her why she walked away, and told her that next time she should go to daddy or mommy and tell them she needed to get away, and that we would help her. It is the most basic of animal reactions: Fight or Flight. Isaac fought. Olivia fled.

Now we watch her reactions carefully, and gauge how we can give her tools to handle her anxiety. Dammit, we need to remember Isaac, and not repeat history. And I am wondering how to give my kids the tools they need to survive in this world. Where do we start?

There are two ways to handle her stress, and I have used both of them. You redirect, or you face it down. I know lots of ASD (and non-ASD) families that avoid situations that can cause anxiety. In fact, this was my main management strategy for Isaac as he was growing up. It was easier on him, easier on me. My theory was that with maturity, he would grow out of some of these fears naturally, and that was true in many cases. But not all. With O, I am taking a different stance. We face our fears, we manage our anxiety, we think of alternatives to handle the situations, we own our reactions. I am grilling Isaac in this now too. He gets embarrased (his biggest issue now), or he acts without thinking first, he then needs to take responsbility for how he feels.

Wish us luck.

It's Called a Chiari Malformation, Type 1...

It has been a busy few weeks. When are they not, for any parent? It has been a busy few weeks for us, filled with doctor appointments and scans and school upheaval, for Little Miss O. Things I have learned during this time:

If you have an MRI, they are going to find SOMETHING. Look over the laundry list
of discoveries and decide what is important, and what is static.

What a Chiari Malformation is.


So Olivia woke up one day with one of her eyes looking at the bridge of her nose. After consulting with the opthamologist, we decided she needed a deeper evaluation, so with the help of a very nice anesthesiologist, she had an MRI. Within an hour of our coming home, we had a call from her Pediatrician, our wonderful Dr. Carol Endo, with some results. As all MRI evaluations should go, she started out by telling me what it WASN'T: it wasn't a tumor. This would be a mantra I would repeat often in the following 24 hours. It puts everything in perspective. It's not a tumor. Part of her skull is pushing her brain stem into her spinal canal. It is causing pressure on her dural sack, and is most likely contributing to her eye wonkiness. IT WILL NOT KILL HER (part of my mantra). But if not treated, it can lead to migraines and some paralysis.

She will need surgery. What kind of surgery (removal of part of the bone or just "shaving" the bone), and when are still to be determined.

And because I am a dork, I googled "Chiari and Autism". Connection? No connection? Well, some connection. It can aggravate some sensory problems, for example, when her eye is crossed, she stims more and is cranky (I would be cranky too). The surgery can alleviate this in most patients with an ASD.

Good times.