Testing The Fates: It Was A Good Year

I know, I know - year is not over yet. But it kinda is for us - we are taking kids out of school for the month of May for a Family Adventure, so feel comfortable evaluating the school year. The 4th Grade has been good to us. Partially because we had a great support team at Alameda, but also because of Isaac. He is almost completely in GenEd, some days not venturing back at all to the CB classroom, and doing almost all of the same work as his GenEd classmates, with just a few modifications regarding handwriting. So what changed? I've been pondering this, knowing that any success is carefully crafted like a house of cards, and just as easily falls apart. So what changed? How far should I get caught up on speculation? Maturity: And I'm not talking about 10yo behavior. More like 8-9yo behavior. But this still means greater understanding, perspective, and self control. Oh, and the onset of puberty. It's started, and heaven help us. Boredom: I've said this before, but its worth repeating. A behaviorist came in to observe him at the end of 3rd grade when he was exclusively in the CB classroom. While it is labeled a CB Academic classroom, a huge amount of academic time is sacrificed to managing behavior problems. And to be honest, Isaac was one of those problems last year. So not sure if the boredom was causing the issues or he was just incapable of handling educational demands, we were not sure what to do. When things are crappy, it can make taking a chance a bit easier. So we took a chance on insisting on starting GenEd at least 50% of the day from day the first week of 4th grade. And it worked. But why? Was it he using the genEd students own behavior as role-modals? Was he just happy to step up to the challenge? Could this be repeated in 5th grade? Expectations: As parents, we started changing our own language. We verbally laid out our expectations for him. He participated in setting goals for himself. HS impassioned love of the U of Oregon Ducks and wanting to go their for college was a really good one (I'm a Beaver, but what can you do?). College is about independence study, reading, writing, and testing. And boom. He went from resisting to working on all. Peer pressure: It apparently has its uses. For years we have been trying to get him interested in reading books and athletics. Within a month of hanging with NT peers, he's reading books independently and asking to join a basketball team. And the more time spent with NT peers, the more he requests to not go back to the CB classroom. Sad and surprising all at the same time. Tomorrow is a meeting regarding Isaac's re-evaluation for SPED. He still qualifies, still solidly ASD. But how he moves forward in this adventure through PPS has to be discussed. We know all too well that it's always two steps forwards, one step back.

Good Times in 4th Grade

I know it's been forever. Sorry. I was distracted by...well..stuff. Ok. I will admit it. I think I've been holding my breath since the start of the school year. My motto has has been to hope for the best, but expect the worst. But experience has taught me to basically hold on to my ass, this roller coaster has just started the ascent. So this school year has thrown me completely off, and I just can't relax and enjoy the ride. It has been my DS's best and most rewarding, and it has me more nervous as hell. This is the year we decided to try the big push into GenEd. Considering what a disaster the end of 3rd grade was for us (multiple suspensions, an FBA), we did know that we needed to try something different. The Oregon Virtual Academy was one viable option, but we decided to request Isaac start GenEd first. Last year he had almost zero time out of the CB classroom, so we did not have high hopes. But he started, first day, in a 4th grade classroom. And it's been great so far. Can I say that aloud? Will I jinx it? In the beginning, he was spending only 50% of his time in GenEd. Now, 90%. He only returns to The CB classroom for social skills, speech, and occasional handwriting support. The only pieces he is not doing in GenEd is cursive and spelling, but I have requested that we add that to his curriculum as well, even if it is just for practice. He is starting to make friends there, although this has been a slower process. But he feels liked and supported. And that is pretty darn good. Now the question of why. Why now? What changed? This has been bopping around my head for the last few months and I have come up with a few theories. Not all very great individually, but together there might be an answer. 1. He was bored in the CB classroom. Although Alameda's CB room is supposed to be an 'academic' one, with most kids just managing behavioral problems but academically near or at grade level, that really isn't the case right now. Love the teacher, love the support team, they've been awesome. But many kids struggle with the most basic academics, and the behavior issues are often so overwhelmingly that academics are just getting pushed to the side. Isaac was spending a lot of time waiting and not doing. 2. Role modeling. When melt downs are common in your classroom, you think that is an acceptable way to communicate your problems. It's the old 'monkey-see monkey-do' effect. 3. He's older. He's 10yo now, and I can tell in many ways he is maturing and handling things better. He seems more self-aware, and seems more in control. 4. His GenEd teacher is amazing, and his entire classroom is a celebration of the slightly geeky - even rocking a Star Trek theme! And many of the kids in his class seem to be slightly shy and bookish, a good combo for him. 5. Zoloft. So who knows. Time will tell.

Caution: Pre-Teen Ahead II

How the hell do I gauge when a behavior is due to the Autism and when it is due to being 10 years old? Both can be difficult. Am I worried over something that, in the end, is pretty darned typical? Example: Isaac is being quite negative. He is under the impression that his parents are being unfair, and that we "hate" him. That we are not listening to him, and we don't understand what he is trying to say. Yes, he has used these words. I'm torn between taking his concerns seriously and being jazzed that he can communicate these feeling to us so well. Not to bad for a kid giving a Dx of moderate to severe autism when he was 4 yo. My perspective is rather tangled, I know. For now, I guess all I can do is take him seriously and not giggle and smile when I hear I'm go on like this. Good times.

Caution: Pre-Teen Ahead

From the day that you start to suspect, through the day it's diagnosed, the therapies chosen, the special classes attended, through all of the books read, the conversations with friends and specialists, all of the way through the paranoia, the fear, the optimism and the hope. To the day, this day. After all of my fumbling and fussing, today I realized that life takes its' own course. All of the progress and often the lack of progress is really up to them. I look at Isaac, and the strides he's made recently. He seems more self aware, more in control. More MATURE. His curiosity has been turned on, the world is opening up to him. The good and the bad. And I have no idea why the change. Totally bewildered.

Time to digest...

I know it's been awhile since I posted. Things have been...complicated. And let's be honest, I can call it complicated, I can blame exhaustion or some personal energy barrier, but the truth is that I needed to ride the wave for a bit. Things were difficult in the spring. Isaac had started Zoloft, was suspended from school multiple times within a very short period, and suffered from a very low self-image. Our focus this past summer was to bring back our boy. We tried upping his meds. We continued our therapy with the behaviorist. We spent an amazing amount of time just supporting him. He started to have problems sleeping, and there was a visible surge in his anxiety. Then, there was this one day in August. He had another horrid session with the behaviorist, where we had to physically restrain him to keep him from running out of the room. The session was cut short and Olivia started her session. Now Olivia's sessions usually are a dream. But this one was not. Olivia was tearful and frustrated. The behaviorist came out to discuss both sessions with me. Things were not good, she said. Things were in fact very bad. Isaac's behavior was "scaring" her, and now Olivia was going down the same path. Ok. I'm like any parent. Hard to see your kids in a negative light sometimes. We left her office, and I was in shock. Was it really that bad? Was I raising a couple of bi-polar rug rats? I came home. I digested, not just her words, but the last 9 months. In session, Isaac had been upset for months. Cried, was frustrated, occasionally would toss a toy at the wall. He was stubborn and inflexible in his thinking. But did this give the behaviorist reason to be "scared"? And why was it only right after these sessions that Isaac would have incidents at school and summer camp? And in the past 9 months, had I seen improvement in either Isaac or Olivia? And why we she use words like "scared" to describe her patients, and in front of those very young patients? You can guess where I am going with this. We did not simply stop going to sessions. We DUMPED our behaviorist. Dumped, as in Hell No dumped. And it felt good. Sometimes, as a parent, I can get just as stuck in my thinking as my kids. I rigidly think certain kinds of therapy is supposed to work, regardless of the imperial evidence in front of me. We started executive function training with our OT, increased swimming lessons with one on one sessions, and just spent more time together. We approached 4th grade with a goal of starting in the mainstream class, something we had not done since Kindie. And somehow, someway, it's working. Isaac is in a gen Ed class 70% of his academic day. Holy crap. He's learning about history, geology, division. He's speaking up in class and doing well. He still has anxiety, but I can see that his perspective is changing. I'm still trying to figure out the "why" behind this change. More digestion.

Not Letting the Zoloft Get Me Down...

Or would a better title be "Better Living Through Pharmacology"? Because I did it. Isaac took his first pill 4 weeks ago. And dammit to h*ll, the little green pills seem to be working. I am not sure if I am relieved or disappointed. I can say this - the guilt I felt for the first two weeks has faded as I have watched my 9 year old boy return to me. After being suspended from school twice in one week (I know that sounds harsh, but I actually don't disagree with it - more on that later), I opened up the bottle and broke one of those little bastards in half. I explained to him what we were doing and exactly why, and talked to him about how it might make him feel. And he took it. Minor miracle in itself - it was his first pill. Ever. And maybe it was a sign that even he felt things were getting out of control. Earlier that day, he had said to me that he wished he had "not been born this way", which no parent ever EVER wants to hear their child say. And what else could I say, but that I was glad he was the way he was. In every way (cue Lady Gaga song). It was an extremely small dose. Maybe too small for his height and weight. We upped it a tad per the Doc in week 3, to a more appropriate dosage. Week one was still tough, but it takes a bit. Week two was better. Week three and four? Oh, heaven. And I really mean that. He has been...happier. Smiling. Flexible. Less obsessive. Stays calmer in anxious situations. He still gets anxious, but he just handles it better. He even did his standardized testing, which all of you parents of kids 3rd grade and up know about. Testing is not Isaac's thing. Testing leads to massive melt downs. And he did it. And did WELL. He's connecting with friends again. But what we have noticed more is that his mind seems calmer, and he is finding joy in things he enjoyed before, like reading. I feel as if my smiling son is back. Very happy. Now, for full disclosure, I will add we made other changes as well during this time, that I am sure have added to the change we see. First, we took a brain break. We turned off the video games, limited most screen time, and started doing far more activities outside. We also changed his routine at school. His class is a CB (read "contained") classroom, and the start of the day was always "free time", while some kids transitioned to their main stream classes or ate their breakfasts at their desks. He is autistic. Free time is not always a good start. Now, he has tasks; some days he does work sheets at his desk, some days he sits quietly reading a few chapters of his book. Either way, there is direction to his start, and he knows exactly what is expected of him. This is how the mainstream classes are run in his school. Shouldn't every class be like this? We have also taken away a big part of the reward system in class. No stars for good behavior - we now tell him that certain behavior is simply expected of him. That's it. Finally, we stopped seeing the Behaviorist. Oh, "taking a break" is a better way of saying it. I still consult with her once a week, and Olivia sees her every Friday. But the shit hit the fan when we started seeing her, and I believe that she will be helpful eventually, but the sessions really stirred up the debris and we can't have that during school time. At the end of the day, I know I can't escape the fact that I drug my own child. And I know that at any point, it might stop working and we will have to re-address this. But it is hard to deny the smile on his face as he comes home from another good day, and I find that I can live with that just fine.

Mental Break or Massive Flake?

I have been having my own communication "disorder" this long, long winter. I dropped off from many many scenes, as well as from the blogosphere. I haven't quite emerged from the goo, but what the hell. Time to get back in the saddle of this particular bucking bronco. Because my sweet kids like to take turns having breakdowns, Olivia is doing amazing and Isaac is in the behavioral cesspool. Poor guy, I get the feeling he isn't enjoying life all of that much of late. His anxiety is pretty much code yellow at best, and the journey to code red is a mere hop away. Anything can set him off - a small schedule change, someone being negative to him, or even the usually enjoyable swimming lesson that we have been going to for 4 years now. So what happened? The only real change is that he started seeing a Cognitive Behaviorist back in December. The goal was to help him work on his anxiety and get him ready for more mainstream classes. And since then, his anxiety has rocketed to the point that we dropped his mainstream classes, he resists doing anything new even with prepping, he is anxious about doing anything from sleep overs with friends to swimming lessons, and I have had to collect him from school a half dozen times because he was being "unsafe" (his a teacher, hit another student, threw an item, or tried to leave school). I had to pick him up today at 10:00 AM. At one point today hew as so upset that they had to clear the classroom. By 10:00 AM. He had been at school for all of 80 minutes. His anxiety is of the "flare-up" variety. It flashes hot and bright, but burns out quickly. I was at the school by 10:10 AM, and he was calmly sitting in the class quiet space, asking me why I was there. It felt odd taking a calm and smiling child home for negative behavior. I think I need to reassess our approach. I will talk to the behaviorist of course, and I already picked up a prescription for Zoloft for him that is waiting on the top shelf of the kitchen, somewhat accusingly. Are you the answer, Zoloft, or just the start of more problems? Bastard. Stop staring at me. I guess the question I have now is are we doing the right thing? Are we babying him too much? Is it OK to tell him we expect more? Do we need a paradigm shift?

School Pictures, or How To Make A Cute Girl Look Damn Horrible

So bad. Oh, no words too describe how bad. Five year-old girl in line for school pictures, distraught because her aides are trying to convince her to take off her headphones for the school picture (by my request, by the way). She is crying, anxious, refusing to even open her eyes for the photographer. After many tries, he finally gets one with he eyes open, red and weepy. Big tears on her cheeks. She did manage a "smile", which looks an awful lot like the grimaces I made while in labor with her.

We are not doing a retake. Screw it. Hopefully someday, at her College graduation or her wedding, I will pull it out so we can laugh. This will take some perspective only time can provide.

And no, will not be posting it.

TOPS Soccer Comes to the East Side...

...and my kids were poops about it.

We went last week, and the kids did great. It was a small showing, just the coach and 5 kids kicking the ball around the Ferwood gym and having a good time. We spread the word around to friends and classmates, and the showing this weeks was a dramatic increase in kids and even a dozen Grant HS kids to help with out. The balls were flying, the teens were drawing out the shy guys and kicking the balls, it was fantastic.

Isaac kicked around the ball at first with a cute Grant Girl, then sat down and refused to move. She sat next to him and he finally told her that he was "too tired". Instead of demanding that he get up off the floor, I tried a different tactic. "OK. You're tired. That's OK. But if you are this tired at 5pm, then after soccer we need to get you home, feed you something quickly, and send you to bed to get some rest. OK? You get to decide. If you get back up and try to participate, we can still go get hamburgers after and you can have 20 minutes on the computer game".

It took him awhile to get back up. I asked Isaac to be the goalie while I tried to kick the ball at him. Finally, movement.

Olivia was worse. We are talking fingers firmly plugged in her ears, not talking, and LYING on the gym floor while balls flew around her. Her friend from last week, Wren, came over and tried to draw her out, and her best friend Mia did the same.

Nada.

We tried everything (I did not bring her headphones, since she hadn't needed them at last weeks soccer practice), to lure her out of her turtle shell. Nothing, although at one point she did giggle and tried to catch the ball with her elbows, not willing to unplug her ears. Poor Wren and Mia were so disappointed, and I kept telling them to please not take it personally. She is just really (pathologically) shy. Finally, I placed her next to Isaac and tried to get her to be goalie too. Isaac played goalie, O just lay down behind him. She started laughing at our silliness eventually, and Wren and Mia joined out little game, but still. When both kids left the building and started piling into the car, both kids emerged from their goo and were laughing and playing.

What is going on? Isaac has never been this shy before, and Olivia is prone to this, but how do I manage it? I think we need professional help again. I don't want them to miss out on their own childhood, burdened by all of this anxiety. And I feel so anxious for them, I worry they can somehow sense it!

As we drove home I praised them for trying and told them we need to come up with a clear game plan for next week, because there will be a next week. And I want them to help me figure a way to make it better for them. We got home, and Isaac had his computer time, and Olivia was allowed to watch and episode of Word Girl.

Then I had a glass of wine.

Wandering Out into the Typical World

Isaac is 9. He is changing, more independent, more apt to challenge his mom and dad in the small ways of 9 year olds (I don't eat to do this, I don't want to eat this), and wait timidly to see how we respond to this defiance. We are semi-strict at best, so are trying out different responses. With the new expansion of his sense of self has come new fears, and suddenly Isaac, who has never really felt shy about doing new things, is almost crippled by anxiety.

For example, we have (re)-joined the Cub Scouts. We tried this in 1st grade and participated for about 10 months before we basically got bored and let it drop. We joined a new pack and are finding it a far more active and social group. At the first pack meeting, where Isaac was receiving his first badge, Isaac shut down in a way I have not seen before. He put his head down, lowered his shoulders, and put his hands up as blinders to block out the two kids sitting next to him. He mumbled responses, and refused to make eye contact even with me (eye contact has never been a problem with Isaac, at least not for the last few years). It was physically painful for me to watch, and confused the other boys.

All I could think to do was whisper to him , "Never hang your head. Always keep your chin up. The only way to get over your fear is to look it in the eye."

I don't know how helpful this was. After about 30 minutes, he finally got up and started to participate though. He was so brave. I can't imagine how hard that was for him, but I have a new appreciation, having witnessed this.

Since this meeting, there have been two other new experiences that Isaac has resisted heavily, but he has done each one, mainly because I forced him. Is this the right thing to do? One was a soccer class, one a school party. Afterwards, he told me both times that "you were right mom, it was fun", but was he just putting on a brave face? Is the stress of these social interactions more damaging then the benefits?

The Attack on the Mouse

So we did Disneyland. 5 straight days of over-stimulating-sensory-slamming-crowd-pushing-chaos. Not an easy feat with NT kids, intimidating with two kids dealing with a variety of anxiety issues. It was exhausting.

It was awesome.

We had planned the hell of this trip, evenings spent with the kids pouring over guide books, looking at YouTube uploads of the park and hotel, discussing game plans and park maps, going on for nearly a year. Was it all worth it? I will say yes since it was a great trip. Was all of that planning necessary? Probably not, they were so happy and distracted by everything all around them there was little in they way of anxiety or meltdowns (none, in fact). And every night at the Disney Hotel was a blank slate of dreamless sleep, the sleep of the truly exhausted.

In fact, I am still exhausted, unable to pull even a real post together. Sorry folks.

Week Two @ Alameda Continued

Something is changing for Olivia , and she seems more at ease going to school the last 2 days. At ease or resigned? So hard to tell. No tears, and she has established a morning routine with one of the para-aides, which is starting the day at a desk in the hallway until the final bell has sounded and her classmates have settled in for the day. They also have structured in a few social "breaks" for her, where she can leave the class with the aides to do things such as deliver things to the front office or the other CB class. And at recess she is allowed to sit on her own with one of the aides but only if she is willing to participate more during the learning stations. She is eating more at lunch, and every day she engages a bit more with teachers and peers. At pick up, she is holding a peers hand coming down the hall instead of clinging to an aide, and has actually smiled when seeing me again.

The difference is that the staff have managed to find a routine that is starting to work. They are being flexible, and encouraging her to be. That was missing in mainstream for Isaac, and from what a few parents have been telling me, is missing in some other CB classrooms. So I am feeling lucky and still holding my breath. It is still early.

Week Two @ Alameda : Are We Having Fun Yet?

Oh, Mini-Peanut. Oh boy. Do I wish I could make you feel better.

The second week of Kindie is rough. She wakes up sad, I struggle to get breakfast in her, she walks limply from the car to her school, and as we approach the school, insists that her ear coves go on to "make the sound go away"' and as we get closer to her room, she whimpers and then cries.

Ugh.

When I pick her up, Mrs. McCormick says each day is better, she participates a little more at their academic stations, and even wrote her name and named her letters yesterday. But when she comes out at 3:00pm she seems heavy with sadness, ear covers still on, not even perking up when she sees me, and with her eyes all wonky and crossed from strain (she needs her glasses full time now). She won't speak until we are clear of the school, and then immediately she smiles and sings songs.

Holy sh*t.

So here is the stress list I run through daily:

1. She needs time to adjust
2. She's heading towards a panic attack ala Isaac in Mrs. Raddick's class
3. She needs to learn independence
4. Her anxiety has her clouded in a fog all day
5. Kindie is a must, and she is in the best possible class and program
6. Can she even learn when she is like this
7. At some point she needs to join the typical world, and in that world, you go to school with all of the noises, lessons, and challenges that
come with it

I am giving it a month to see improvements in her demeanor. Then we will address her time in the classroom, and decide if we need to go part time. If that does not help, then maybe we need another year to mature.

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.

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.

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.

Trepanning!

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.

Seriously? They Have a Walk?

O's eye-crossing started around her 5th birthday, and four months later it has lead us down this crappy little road to watching an MRI video of the flow of her spinal fluid halting then pooling around the top of her C1 vertebrae. We have known it was a Chiari 1 malformation since the MRI a few months ago, but Friday was the big meeting with Dr. Wehby, the pediatric neurosurgeon.

I was actually very calm going into it. I had googled the hell out of it, talked ad nauseum, to friends and family, and knew the right decision would be made. Well, I though I was calm. For the four nights prior to the appointment, there were nightmares. One night it was the classic lost child dream, followed by the zombie invasion, tornado, and falling dreams. But I looked pretty calm, even through the appointment. Oh no, wait, I may have been a bit tense after all, snapping at the kids (did they sense my tension and act out?), looking as if I was one of those parents who can't manage their own brood.

Okay. It was bad.

Even the doc felt bad for me, telling me over and again, "it's okay, dah'ling" (she's a southern women maybe only a couple of years older than me).

Basically, her cerebellum tonsils are descending past her C1 vertebre and restricting the flow of spinal fluid, occasionally allowing the fluid to pool at the base of her skull and putting pressure on nerves, muscles, and cerebellum. This has developed over time, and the eye crossing was just the most obvious symptom. Headaches, numbness and/or weakness in toes and fingers, speech delays, sensory issues such as sensitivity to light and sounds, delays in potty-training, and other things can occur because of the restriction of spinal fluid and the pressure it is causing.

One can't help but see a similarity between the C1M symptoms and her Autistic traits. Can't quite go there yet.

A Decompression surgery has been recommended. A piece of her skull will be removed at the base to make room for cerebellum and eliminate the pressure. It is believed that the removal of the bone will be enough, and any messing around with the dural matter can be avoided. A "simple" surgery. Just bone.

And I was Very Calm while discussing this (in-between snapping at the kids) with the Doc, and Very Calm telling family and friends, and Very Calm until 5pm Saturday when I finally had a chance to sit down and do more research on the surgery, and then I stopped being Very Calm and started to be Slightly Freaked Out.

So not only are we members of the autism community, but apparently there is a Chiari community too. They even have a nationwide annual walk in September. Not feeling very community-minded right now...

Off the Wagon

We had a total GF-breakdown yesterday and baked Isaac's famous yummy peanut butter cookies (used flaxseed and 1/3 GF free baking flour, but yes, regular flour as well). Isaac begged, and I caved. Why? Why after 3 weeks of being so good?

Refer to next post. I was weakened by rough winds and was reduced to a grand moment of "f*ck it". It's okay to say that sometimes, isn't it?

P.S. on the Gluten Free...

I already cracked on the Gluten Free diet, by day 2. They were offered a cookie at the store, and I let them have it. Dammit! Weak weak, weak as water (me, of course, not them). Will try again tomorrow...