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...

Our Over-Scheduled Summer - or, How I am Learning to Chill Out and Enjoy the Summer

Pretty hefty title considering that summer has only JUST STARTED, but just listen to what I did to my poor kids.

Bike camp took up all of our first week of summer, and I was warned to just let him relax when not in camp, so he can process. Sage advice, need to heed it more often. But this week we were off and running on our summer schedule. Now, when I was setting up the summer plans, I was soooo proud of myself. I think I mistook (again) a shit-load of activites for good parenting once more. Mornings at the day camp at Beaumont, then 30 minutes to choke down lunch and down to Grant Pool for swimming lessons (both kids), and then on Mondays and Tuesdays we dash over to the Artz center for speech and social skills, and then on Monday and Wednesdays, we still have martial arts for Isaac from 5:30-6:30. And on top of it, we would be starting our new Gluten-Free diet! Aren't I great! See how I keep my kids engaged through the summer!

Well, will let you know that this new summer schedule didn't even last one day. I think I made it to noon, and then it fell apart. I spent more time than expected adjusting Isaac to the Sun Day Camp (he attended two years ago, and the director remembered him and was so happy to have him back, and we are flying minus the inclusion services to see how it goes), and while he had fun in the end, I was on edge. By lunch time I was so proud of him for not becoming too anxious by the new routine, that I took him out to lunch (Pokemon toys at McDonalds, damn you marketing team!), and missed the swimming lesson. Oh well. We managed to get to everything else that day, but it was obvious there was a little burn out.

So here we are, day two of our Official Summer, and we have already dropped out of swimming until end of July. I can tell myself that it's too cold for the outdoor pool, but ALL of last summer was too cold and we still managed to splash around.

I remind myself that back in my day it was ok to sleep late in the summer and watch Scooby Doo while eating cereal, that I wasn't being shuttled off to camp and swim lessons every day. I need to relax, and let them too. Well, at least until I start to feel guilty again for not doing enough for them and start searching for openings in random Portland Parks and Rec classes...poor kids...

Bike First NW: Lose the Training Wheels Camp Ends!

I will start by saying that the Bike First NW Lose the Training Wheels camp was worth every penny, not just because they got Isaac up on two wheels as advertised, but because they seemed to have shifted his entire attitude about bike-riding in general. He gets on the bike for our daily practice runs without a single complaint, he does not get frustrated when things don't go perfectly, and when he was nipped by the bike and bled from a small scratch, he managed to not sound as if the injury would lead to an eventual amputation, but instead asked for a band-aid and GOT BACK ON THE BIKE!

Now, we have only cruised around the church parking lot across the street from our house (only filled with cars on Sunday, perfect location), and over on the Jefferson HS Track that he learned on, but we will get there in good time. In the meantime, I jog alongside him and challange him to "races" (helps motivate him to keep pedaling faster). And the second miracle from the Bike First camp...I find that I can (when properly motivated) actually jog for more than 2 minute stretches! I might survive the Zombie Apocolypse after all!

Bike First NW: Lose the Training Wheels Camp, Days 1 2 & 3

It is a summer ritual. We trim up the backyard, start regularly scooping up the doogie doo, hose out the long-suffering kid-pool, buy a Costco-sized (yes, I use 'Costco' as a verb) bottle of sunscreen that gets lost by July 4th, and purchase Isaac a new, bigger bike to fit his new, bigger frame. Does the helmet still fit (always 'no' - he is wearing an adult sized one now. Thank god I didn't have to push that noggin through my nether-regions when he was born)? Does it come with training wheels? Good.

And then the bike rusts, unused and unloved in the backyard. To be fare, it has good company - my big pink cruiser sits beside it, similarly avoided. My husbands street bike taunts it from near the gate. Screw you, you yellow Bike Gallery Snob! What even makes this more tragic is that I live 4 blocks from a major bike highway (N. Williams) in one of the most bike-obsessed cities in the U.S. I also don't hike and will only camp if there is a working toilet within 50 yards, so yeah, I am a BAAADDD (native) Oregonian.

Anyway, we do try to get him on the bike with the training wheels. But he just hates it. He freaks out in the most Isaac-of-ways, usually involving screeching "I'm going to die!" if you don't hold on the the handlebars and walk (never have to run) alongside him. And note, this is WITH the training wheels. We would pull it out once a day for a week, get burned out and maybe bring it out once a week, and then by July 15th, it was locked up until we donated it to GoodWill. Until Spring bloomed in our hearts, and with renewed vigor, we bought the next one.

So what was wrong? Well, his balance was horrid, a combination of anxiety and nature. This kid crashes into the living room walls, which have not moved in 110 years and are still in the same location as when he moved in at 5 days old. He has issues paying attention at times, especially when trying to combat his anxiety, and is notorious for not looking where he is going. He further more was very stiff in his hips, and had a hard time pushing the pedals. We did not give up, but when faced with kid who rises to challenges each and every day, it became to hard to push one more in his face.

Last summer we were told about the Lose the Training Wheels Camp, a national program that travels every summer teaching kids, NT and not, how to ride a two-wheeler. We were too late for Summer 2010, but I jumped on it this year and we signed up for the 5 day bike camp for kids with disabilities. It sold out fast.

The camp started this week, Monday. Isaac was hesitant, telling me over and over that he "wasn't ready". We signed in at Jefferson HS where the camp was located this summer, put his name tag on, and had a snack and quiet time before going in. Still, he wasn't ready. Then his spotter came out to introduce himself, and Isaac was not ready, but dutifully followed Elliot into the gymnasium. The door was closed, and that was it.

The program is as such: there are 4-8 kids per session, 5 sessions a day, with 2-3 spotters per rider. Each session is 75 minutes long. They start out on special bikes fitted with rollers for a back wheel, which is slowly raised throughout the first few days. If the riders need additional help, they then move to a tandem bike with their spotters, and then to a two wheeler with a special handle before hopping on their own bikes and moving outside to a runners track (if you want to see it in action, go to YouTube and put in "lose the training wheels" - there are tons of videos of previous camps and campers). They are also taught the basics of safety, braking, self-starting, and staying focused. There is a success rate of 80%. I guessed our success rate was more like 70%. Could they even get him on the bike? I couldn't.

Day one he emerges with a big smile. "I did it mom, I was GREAT!". Oh joy, he had fun, which was so much of the battle for us. Now Isaac is quite the politician, and even when he HATES something, he will say he loved it, but then not want to do it again. But the next morning he put on his camp t-shirt and went back in the gymnasium with a smile on his face.

Day two - he improved. They gave me his daily update, and balance and focus were still on his to-do list, but so was his progression to a higher and higher roller. And more enthusiasm. My sweaty and happy boy received his daily prize (Day 2 was an REI water bottle), and talked about coming back on Day 3 and trying it on two wheels for the first time.

Day 3, and 15 minutes after I sat down to amuse Olivia, I was told to gather my things and head outside to the track with my camera. And sure enough, there was my baby on two wheels with his spotter running alongside him, no roller, no training wheels, and laughing with joy. Day 3, and he was doing it!!! Sappy sissy that I am, I cried a bit. Quietly and quickly.

Bike First is very strict towards the parents and very positive towards the child. The list of rules the parents have to follow to attain (and maintain) success is pretty long. I will go into that more in a future post. But so far, I think it is all worth it. The simple joy of the wind in his face, doing something so average as riding his bike. It is so worth it.

The GF Diet - AKA How to Suck the Joy Out of Life

I have resisted the GF (and CF) diet for my kids for years now. Resisted? I RESENTED the damn diet is more like it. Maybe it's because we live in food-obsessed Portland, where I feel the need to hide the bag of Cheetos when we have people over, or maybe because when I place the GFCF products at New Seasons into my cart I know that I am basically going to be buggered at the check out stand. Yes, I buy organic and shop locally, so do I need ONE more thing to feel guilty about?

Apparently, yes. So this summer we are going GF as a family. 8 week trial run, while I am still home with the kids and we have the time to carefully handcraft their foods. And only GF to start with - I have not the strength to do both right away.

So back to looking for more than odd preservatives and food dyes on the boxes. I love my babies, and they are worth the hassle. I feel good about this decision, and announced my intention to friends and family. I picked up a range of GF cookbooks from the library to give me inspiration.

And now I am pissy again. It is like a guidebook on how to make eating suck. The list of things to avoid looks like my damned GROCERY list - pasta, bread, oatmeal's, cookies, and if I add the CF to the list, well there goes butter, yogurt, yummy milk and ice cream. How can I really say goodbye to my greatest love - fresh bread and whipped butter? Really?

*breathe*

Yes, we will do this. Summer is a good time for lots of grilling, fresh fruits and veggies, colorful trips to the farmers market and cooking at home. And if after 8 weeks, I see changes, then ok. And if not, I am marching us down to the Pearl Bakery and going at it with wild abandon!


Of course, the above statement does not account for the fact that my kids will hate it, and are damned picky eaters as it is. Can we do it without cracking?

Light Up the Phones: Push for Hearing on SB 555

An amazing mom clued me in to this push to pass SB555, an Autism insurance reform bill, that would reimburse families for costs related to medical treatments related to the diagnosis. For more information regarding this bill, please refer to the link to the right labeled "Autism Votes".

(The Following is from Autism Votes: What the "push" is trying to do)

Here is how YOU can help: You will need to call each day until we say STOP. The People answering the phones should be breathless from answering the phone so much - if they aren't, redial and do it again!

1. Sen. David Nelson - 503.986.1729
2. Sen. Richard Devlin - 503.986.1719
3. Sen. Peter Courtney - 503.986.1600

All you need to say is:

"Hi. My name is (name). Please hold a hearing on SB 555, the Autism insurance reform bill. New cost estimates from PEBB/OEBB indicate our state CAN afford this. Thank you."

After you make these 3 calls, send a quick email stating the same thing.

Spread the word!

One More First in the Books: O and her IEP

It is the IEP dance. First-timers might be surprised by the performance, thinking it either too slow, too fast, or generally lacking in finesse, but those of us in the know see it for what it is. It is the strip-tease without the T&A, the sometimes painfull disrobing of your childs abilities and how they do or don't fit in with the mainstreamed students. The student you mentally (or in my case, physically as well), brought into the meeting is transformed from the person you know into a series of percentages and deadlines.

But most leave feeling the same way: disappointed.

But not me. No way, uh-uh. Because after years of IEP meetings with Isaac, I have learned a simple survival trick.

Are you ready to hear it? Shhh, move closer. I will tell you if you promise not to pass judgement. Oh, hell. I will tell you anyway...

Lowered Expectiations. YES! I said it! Not about my child though - I lower my expectations about the MEETING. Because you know what? It is not really regarding my childs' academic future. Her academic future is a fluid thing, and I can gurantee we are not going to fully understand that in Kindergarten. We are creating the loose framework of her next year, to see what works and what doesn't. And if it doesn't work, we will change it. And I know we can change it in a heartbeat if I want to.

But I have learned two very important things from past IEP's.

First: Manage the Behavior and the Academics Will Follow. This should be obvious, but in many an IEP meeting, it is not fully addressed. I have learned this from my son who was labled as being at "high risk" for academic failure (I have read and re-read that particular IEP from Roseway and all I can see is the hidden word 'retarded' all over it, rat-bastards). Finally, at Pioneer, he learned to get his behavior in check and then suddenly there he was, not only catching up to his grade level but passing it in two subjects, in the space of 6 months. So I made sure that on her IEP the focus on Kindie was her behavior, because how can we expect her to learn in circle time if she is too anxious to even sit down with her classmates?

Second: This is Not A Sprint - It is a Marathon. And the route is not well marked, so it is ok to go off the beaten path. I really don't care about standardized ANYTHING at this point - and if my son or daughter solves a problem in a unique way, they are not going to be penalized for it. I am raising human beings, not robots, and Autistic ones at that. Their hardware is different, and I will do my best to make sure that they are proud of that, not ashamed. The finish line is there, and we will cross it (and for us, that finish line is to get the most out of the life they are given).

(My husband just pointed out that I sound a little 'rant-y'. Sorry).

Walking in with those two ideas in my head helped me to have what I would describe as a successful IEP meeting. She is going into a CB classroom (next door to Isaac's), and will slowly be mainstreamed through the year. The focus will be her behavior, and we are slowing down so we catch things as needed, instead of letting them all and scatter on the ground (oh, poor Isaac. Kindie as rough for him). Yes, should might be fine in a mainstream class. But there is a big difference between swimming and just dog-paddling.

End of the Second Grade - Our Grand Experiement at Alameda

One week left, and we are filing away Isaac's 2nd Grade year in our memory books. It was a good year, an IMPORTANT year, and the first year he has had since leaving EI three years ago that was, (dare I even say it?), NORMAL. Not in the NT sense of normal, which I honestly believe now that there is no NT Normal, but in a normal school year.

What constitutes a normal school year? It is very simple. Your take them to school, they attend class, have homework, field trips, playdates, school concerts, plays, parent/teacher conferences. What exactly did we do before the second grade? Emergancy IEP meetings, Functional Behavior Assesments, multiple calls from the front office to come get him because of meltdowns, two (yes, two) calls from the Portland Police to report "incidents" in the classroom (both at Roseway - check previous posts for details), an expulsion hearing, and a transfer to a special contained behavioral program at Pioneer.

The biggest emergancy this year at Alameda? His teacher called once this entire school year. ONCE. To report that they couldn't find his lunch box. And then they found it in the classroom. That was yesterday.

What changed? I think mainly we stopped trying to force our square peg into the round hole. He is not a typical student, and finally between us and PPS, this was awknowleged and accepted. And no that he is finding his own rythem, suddenly even the mainstream classes are working.

Next year is a very different year. Classes are going to become harder, the social world more complicated. And we are going to try to be ready for that. Now the focus has shifted to the summer and the first summer off for Isaac since he was 4 years old. No extended year services, no fear of behavior or academics slipping during the months off. Might need to call it our "Summer of Being a Kid".

Still, I am looking towards fall already. His mainstreaming is going to increase, which is good and scary. Isaac is getting bored in his CB classroom. It is a CB Academic, but he comes home asking why some of the older kids are not doing as much as him when it comes to math, reading, and science. And boredom in kids is always a bad thing.

So, what are you doing this summer?

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.

ASD and Phonics...

Quick note on phonics: I have a sight reader in my 2nd grader. He knows what sound each letter makes, and what sound letter combinations make (such as 'ch' and 'th'). But he is a sight reader, and that is just the way it is. And he is a damn good sight reader by the way.

He is getting better with phonics, but I put it all in perspective. I am a sight reader, and most likely, so are you. Only on occasion do I need to sound out a word (although it came in handy when I was learning a foreign language). Yes, phonics are handy-if-not-essential as a skill. But sight reader or phonics master, they are still going to reach that same goal of reading the damn book. ASD kids just are hardwired differently and need to need to learn their own way and not be pigeonhold by an education system that are obsessed with meeting test score goals. Really, how successful has that been so far for US schools?

Talk to the teacher. Talk to whomever you need to about alternatives. Make sure they understand there are 'neuro-typical', and there are 'neuro-different'. Talk talk talk until they are so sick of your voice, they just agree with you.

CB Classrooms in PPS

*This is based on our experience and observation, and may differ from the experience others have had. Please view it in this light.*

There are two types of CB (contained special education) Classrooms off erred by Portland Public Schools. There is the Academic and there is the Functional. They are almost always further separated by age groups, for example a K-2nd grade and a
3rd-5th grade. Some schools offer only one type and only one age group. A few, like Alameda Elementary, offer all types instructed side by side within the greater school. Every school cluster should have a CB program (for example, Alameda for Grant Cluster, Roseway Heights for the Madison Cluster).

YOU ARE NOT RESTRICTED TO THE CB PROGRAM IN YOUR CLUSTER (although you will be given preference there). We started at the Roseway CB program although we are in the Grant Cluster (due to lack of openings at Alameda at that time of year). In our Alameda CB program, there are kids from many different PPS clusters. But it is not easy to get into a program outside our cluster, and there are waiting lists at the better (and yes, there are better), programs. And if you happen to live in a cluster with a preferred program and they try to tell you that you must go outside your cluster due to lack of room in that class, dig in your heels and start to push on how you CAN make that happen. PPS did try to move Isaac from Pioneer to Roseway Heights (yes, even after our previous experience at Roseway), and I was up in arms and we were able to start at Alameda in the fall.

Although Isaac was never supposed to be in a CB functional class, at Roseway Heights he was in one. I was told it was academic, but it was not. What is the difference? Academic is for children who have either a physical or a social/behavioral issue that does not allow them to have success in a typical class environment. Academically, they are supposed to be taught at grade level. Most kids spend some time out of the CB class with their typical peers, with the goal to slowly increase that typical time until the are only attending the CB classes for special services, such as OT or Speech. This is a great transition place for kids that are almost there, but need a bit more support. It is a good time to focus on strenghts and work on weaknesses. But note that some of the kids in that class are not working at grade level. For example, Isaac does 2nd grade math with children who are actually in 5th grade, but struggle. He is also doing some 3rd grade math. So in my observation, it is a fluid thing, and kids are allowed to learn at their own pace without stress or anxiety. The difference is that these kids are also capable of managing themselves in a supported classroom, during group time and APE (adjusted PE, I think).

In the functional CB room, they are still working on the basics. ABC's, numbers, basic reading skills, learning to sit in small groups and follow directions, learning the skills to be independent (use the bathroom, waiting their turn, etc). It is less structured at times, a little more time with independent play, less time with actual academics. Some of these kids will spend time with typical peers, and generally start out with non-academic activities, such as recess, lunch, etc.

Some programs are a melding of all of these. Confused yet? How to tell which one is offered? Ask, but not simple "yes or no" - ask what curriculum is offered, how much time does the average kid spend with their typical peers, how many of the students are learning at grade level.

How to tell which one is best for your child? Or just mainstreaming with some supports is the right choice?

Look at your child. Isaac is my best example, so I will talk about him. He started in typical kindergarten with an aide. The aide was slated to last for only 8weeks to help with the transition. The kindergarten teacher was not receptive to having a special needs child in her classroom. She actually panicked a bit. Not a good sign. Meet the kindie teacher - how open is she/he to having your child in class? Do they ask questions about your child? Ask for suggestions on how to help and motivate your child? What are their experiences with children with different needs? Trust our gut. I didn't, and it was not good. Even with the aide, by Christmas Vacation, it was falling apart. Isaac just could not keep up with his peers. It was causing anxiety. He did get some wonderful things from it - his speech improved, he was able to keep up with math and sight reading, but at one point he was just struggling too much. He had a panic attack and we removed him from the class. It was the constant low-level of anxiety over months (he never said that he hated school or anyone in it) building up and finally, collapse. And it was serious - it took us over a year to recover from it. We lost time in school because of our own need for him to be as typical as possible.

Roseway, and the not-quite-Academic CB program was next. It was ok at first, because he was in recovery mode and learning to handle himself in a classroom again. But after a few months, cracks were beginning to show there too. Some were unrelated to the actual program itself (part of that year-long recovery), but because the class was not academic and the teacher was too inexperienced to understand that Isaac was detaching out of boredom, not inability, the teacher added to his IEP that she thought he might be showing signs of depression (?!?!?), and mild retardation (not her word, but that was what she was suggesting). He was not being challenged, so he spent a lot of time on the computer and looking at books. I am noting this because when we pulled him from Roseway, the home school teacher and then the staff at Pioneer were very confused on why he was assessed as behind and depressed, when he was actually able to work at grade level or better. It was the wrong environment again, and he suffered from it.

So here we are again. Olivia is entering K in the fall. The PPS rep observing her asked what WE saw her doing next year. I immediately took mainstreaming off the table. I am no longer stuck on the glories of mainstreaming in the beginning. I already know she is not as up to speed as her peers, and do not need to make her feel even more so. This PPS rep knows our struggles with Isaac, and so agreed with me. She is starting in the CB class next door to Isaac's for Kindie, with some mainstream time with her typical peers. She will be fully supported as she catches up. And then she will re-take kindergarten fully mainstreamed the following year. This has been proposed by the PPS rep, so will see if it is accepted. Or, if that doesn't look likely to succeed, she will continue in the CB classroom with some mainstreaming time increasing as the year progresses.

We have a saying in my household: It is a marathon, not a race, and we will get there in the end at our own pace and taking our own route. But we will get there.

Our expectations for our kids shifted the day the received their diagnosis. But not our dreams for them.

And Now I am Freaking Out About 3rd Grade...

Yep. I have a general rule of Deal With The Now - don't regret the past (too much), don't fret about anything too far out. Oh, and one kid at a time. Otherwise my jesting about copious wine consumption would be less funny, more After School Special.

So just days after meeting with PPS and discussing O's immediate academic future and coming up with a plan for next year, I have moved on to freaking out about 3rd grade. I freak out in the same way, each time, each child. Mainly, horrid dreams, always tired, and incapable of making a decision. So healthy.

It started innocently enough, chatting with a Isaac's classmates Mom about how the friend ended up in Isaac's class (she is a new student, coming in from a school in NW PDX). Maybe not so innocent - it is like comparing war wounds at times. And we are so matter of fact about it. Anway, she said E had done fine being mainstreamed since Kindie, then 3rd grade. Larger classes, different teaching style, different level of class participation. E didn't so much fall behind since the she could finish her homework in no time flat. But she stopped particpating in her classroom. The day would start with her grabbing a book and reading it all day, shutting out everything else. So E started in a contained classroom with Isaac.

So what will this mean for us? I think I had it in my head that Isaac would move to being fully mainstreamed by 4th grade, spending a huge portion of 3rd grade with his typical peers. We definately saw him out of the CB classroom by middleschool. Now, I wonder if that is the best course to take. Now I am beginning to wonder if mainstream, or in our world, MAINSTREAM, is the best course of action. For us and him.

How important is mainstreaming, anyway?

Missing In Action

It has been a few weeks since I even opened up this dashboard to look or write. Things have been crazy, spinning around like a cartoon Tasmanian Devil. And I have been just hanging around in the dust and debris left behind.

To be honest, I am still there, but emerging.

So the shorthand: Olivia's sweet little Sunnyside program is gone, due to just a range of non-school related issues that are none of my business to go into detail on. It was a school run with love and care, but like many small programs, it was subject to the storms of life and LIFE. I am sad, but not surprised.

Olivia has also been on a medical whirl. First it was a nasty virus, then it was chronic hives (virus related), then it was a slew of sensory craziness no doubt due to the above. Then, one silly, typical day, Olivia looked at me and I realized one of her eyes was suddenly, and without obvious reason, crossed. And the sensory maelstrom increased, poor bug. To the point that I am somewhat concerned about some behavior regression while she deals with her blurred world. Now we have glasses, patches, and have an MRI scheduled. And we wait.

So in the midst of all of this wonk-eyed chaos, she turned 5yo, had her first "Friend Party" with two buddies (Princess Tea Party), and has been visited by PPS for her observation regarding placement. I joined some kind of SEPTAP committee (not quite sure what it is I am doing), volunteered to start a newsletter both at Alameda and for SEPTAP, and gained 4 pounds.

Christ on a cracker.

Get back to you soon with more.

More Posts from IEP-Land (and IFSP-Land)

Things are not so bad now. And, considering our history, it means I am paranoid. Happy, but paranoid, as if good times are a place I can visit but can never gain citizenship to.

In the past month, both kidlets have had their annual updates, and the good news is we are now done with IFSP's. IFSP's are not bad little creatures, in fact they are happy, optimistic, gentle beasts in our household, full of tales about how fantastically WELL the kids are (were) doing. I even pulled out Isaac's last IFSP to confirm this impression. The shit didn't hit the fan until his IEP's started. Olivia's was dominated with how her last IFSP goals have been met, except a few that simply stated "progressing". Oh, such joy. Aren't you excited, O's Mom? Felt like a real heel to be the Debbie Downer of the group, but once you've been bitten on the ass a few times, you learn to put on the Teflon granny underpants.

She is progressing, I have seen changes that are undeniable. Her social anxiety is under control for the most part, she is able to verbally manage her anxiety by talking with an adult about what she is uncomfortable with. She sits in circle, plays with friends, approaches children and engages with others in imaginative play, even going as far as making friends with new kids without adult coaxing. Her cognitive skills are very good, and she follows multiple instructions without issue.

But these are new skills. How new? Last 6 weeks? Maybe a tad longer? I noticed them sometime in late January. And these things can go away again. There can be a crisis, and we are slipping back a few steps. Yep, Debbie Downer.

Isaac was also reading this well on his last IFSP. Four months into Kindergarten, and we were sitting in a crisis meeting wondering what the hell happened. I think what happened was that as lovely as Preschool is and as lucky as we are to have the EI staff, this does not prepare a child for the academic riggers of today's Kindie in a classroom of 25 typical peers. The days of cutting out hearts and watching THAT kid eat glue off their fingers are gone.

So the debate is still going on whether Little Miss O is heading to Kindie next year. In the meantime, we are enjoying the good times of two kids who are comfortable and happy in their world.

Isaac's IEP went well. He has started attending mainstream classes with great success. His typical teacher has had a good experience so far with Isaac in class. He has friends, and his teachers adore him. He is funny, creative, and focused.

And it's 2nd grade, and things are going to get complicated soon. 3rd grade is a very different beast, and we need to be ready for that.

Anyway, I know I am a brat. I will try harder.

Stim-ey Stim-son

Our version of Autism is a funny little thing. It moves in fits and starts, like a jalopy sputtering down the road. It can stall out, go no-where for months on end, and then the engine turns over and we are on the move again.

In this analogy, stimming would be like the engine revving.

Let me back up a bit. O has been stimming like crazy since December. She is a dedicated stimmer, of course, much more so than her brother. He's a pacer, and still on occasion let's us know that he wants to be by himself and goes into the backyard to "think" (his word for it). He is very aware of this need, articulates to us what he is thinking about when he goes out (generally, what happened that day at school, or about his favorite game/cartoon). This happens a few times a week. O is far more regular - at least a few times a day, usually only for a few seconds or minutes. She is a bit of a hand flapper, but more of a noise-maker (a low, vibrating hum coming from the back of her throat). Books are her favorite object to stim with - and just try to take that book away from her. She is busy, thank you.

But for the last two months, oh man. She has been going for it. Harder. Longer (whoops! that sounds like a synopsis for a porn flick). O has had a few major stimming phases before, and it was alarming enough that first time for me to see the neurologist to make sure she wasn't having seizures (first clue she wasn't - she snaps out of it when you talk to her). They are harmless it seems. In fact, I will go a step further and say that I suspect that she has a major stimming phase right before something new emerges in Little Miss O. Are things connecting in her noggin? Is another part of the world opening up for her?

I think so.

Because the little girl I took into the Dev. Ped. in November is a bit different from the one who went in last Friday. Dr. G took notice. "Wow. I don't remember her being this...engaged in our last visit". She was all over the place, talking and laughing, playing games and even trying to tell a few jokes. Ok, she was a teeny bit out of control at times, but still very different than the shy little munchkin from a few months before. This joker has been showing up at school too, actually playing with her classmates rather than clinging to her teachers. She even made a poop joke. Yes. This is a source of pride in my house.

And finally, the biggest joy of the year so far. O attended a birthday party for a friend we have known for years. And this year, she actually ATTENDED IT. Not dragged by mommy out to play party games, she did not once hide in my lap or ask to leave. She went on the scavenger hunt, played red light green light, and even joined a three legged race. Not once did she grab for my hand or shy away from the 10 mostly new kids that attended the party with her.

So are we doing anything different? Any new diet feature? Therapy? Vitamins?

Nope. She was just ready to go play.

Siblings

Saturday night D and I came upstairs to find two little ones and a dog in our bed, snuggled up together. Child 1 was reading a book to Child 2. Child 2 was laughing at Child 1's interpretation of Big Nate's latest adventures. Then C1 folded the corner of the page (bad habit from mom - house is full of book marks) and told C2 "that's all for tonight. I'll read more tomorrow". Someday I will tell C2 in depth about how important C1 was to her development.

When O was born, wondered about how their relationship would play out. Her birth and his diagnosis happened within a few months of each other. The first year or so of her life, he barely noticed her. She really didn't register all that much in his world, and I was actually relieved at the time. Then when he did, she was merely an annoyance. As she started to make her presence known more, there were constant reminders for him to be "nice" to his sister. Don't take toys away. Don't say mean things to her.

At some point in the last six months, Little Miss O started to assert herself, make her own demands. I waited for fireworks, that never came. Instead, they started to PLAY together. I even remember the day - it was May 6th, and we had just watched Toy Story for the first time. I had picked up a few of the action figures and presented them to the little monsters, and within a few minutes they were in the playroom, re-creating their favorite scenes from the movie. It has been chaotic at times, and there is bickering of course, but they are still playing together. And she is now taking these "skills" and playing with her friends. When they are together, they are as typical as two kids can get. And I am one happy momma.

I think all I did for my little brother was thump him in the head on occasion and tell him to go away a lot. Somehow, he survived. Isaac is a much better sibling than I ever was.

Bike First! Registration Open for Summer Clinic

Heard about this last year too late to join, but we are attending the Bike First Clinic this summer (link to right under "What We Know About").

This is one of our parental failures friends: hubby and I were just not capable of teaching Isaac how to ride the bike with anything resembling confidence. He is still on training wheels, and seems unable to get over his anxiety. He also does not seem to understand how hard he needs to push the pedals to move forward, and can't steer very well.

But yet, at the end of last "Summer-that-never-was", we saw Isaac pedaling and steering like a pro on an adult sized trike during a company picnic. So we know he CAN do it, but his anxiety and our sad-parenting skills are likely getting in the way.

I have heard stellar things about this program, and signed us as soon as the registration opened (which was today). Will report back to let you know how it goes this summer.

Basically, what this is telling me is that my new Mommy-approach is going to be "if there's a problem, let's throw money at it!" Can't be any worse than some of my other approaches, such as "ignore it and it will go away", "they are the experts so let's let them handle it", and the infamous "that's not my kid - I don't know WHERE his/her mother is"!

ACB, You and Me

Tara's momma (note link to her blog to the right under 'Things We Know About') emailed me some damned good questions last night, and I wanted to share those answers with everyone.

Here are the questions (almost)in full:



"Could you tell me about the ACB classroom at Alameda? Do they teach the STAR Curriculum? How is the classroom set up? How functional are the kids? What do you think about the teachers and aides? How many kids? How many girls? Do they have supported play times? Do you like it? Does Isaac like it? Is this the potential setting for Olivia next year?"



So for those of you who don't know, an ACB classroom is an Academic Communication and Behavior classroom. What that means is academically, the children are able to perform at grade level, but they need additional supports to function on a social and behavior level. Alameda has two such classes (although at Alameda they are referred to as SLC classes). One for the K-2 set, one for the 3-5 set (Alameda is only a K-5 school). Isaac is in the latter, although only in the second grade. Academically and size wise, they decided he was a better fit for the older class.



There are currently 5 aides and one teacher. And 13 kids (two were recently added). There are only two girls in this class. About half of the kids spend time outside of the classroom with their typical peers. A few actually spend MOST of their time with their typical peers, coming back only for supported lessons. One of the aides goes with them to those classes, and brings them back when needed. The other half do not attend classes outside of the SLC room. They have their own recess time when there are no other classes are out, so that it is a calmer environment for them. They eat lunch with the rest of the student body, at their own table. There is an adapted PE (APE) class twice a week.

Am gonna admit I am not so sure about the Star curriculum, and am embarrassed to say so. Finding out from Mr. Kroswek ASAP.

The class has a high level of structure. Each child has their own desk, facing the front and with an individual calendar on it, and a general schedule for the class on the main board. In the back is a "Calm corner", a little space to have down time if needed. There is a lesson area for group lessons, a small class library and a lot of games for social skills times. There are 5 macs for kids to either earn play time on, and for a variety of lessons (I don't know about your kids, but mine always learn better in a multi-media form. I don't mind a little AHA math time at school). There is free time every day to allow kids to interact more, and if a kid has a "hard day", it can be limited by the teacher.

There is a lot of structure. The rules are very clear, expectations are set out very clearly. It is not exactly warm and fuzzy sounding, but these are 3rd-5th graders and structure is important. One of the problems Isaac had at Roseway was a lack of structure and unclear expectations, and it cause a lot of anxiety. He knows that when he comes in, he needs to sit down, and start with his daily assignment (waiting in his folder on his desk). He knows that if he wants to earn his stars, he needs to behave nicely, do his school work with little prompting, and follow the general rules of the classroom. Stars mean rewards at the end of the week, and my kid digs that. The teacher and aides are eternally helpful and supportive, which was not my first impression when I met them. They have proven to be great advocates for Isaac. He likes his teacher, likes his classmates, and loves the aides.

Isaac has limited typical peer time, partially my request. I was concerned when we transferred from Pioneer, and wanted to slow down mainstreaming to make sure he was comfortable and ready. He does have Music and PE once a week with his typical peers, which he has enjoyed and been successful at. In March, we are adding math and reading, two topics that he is able to handle easily at grade level. I have requested that he receive a homework packet from the typical 2nd grade class for us to work on at home so he doesn't fall behind his peers. It also allows me to know where our weaknesses are. He is ahead of his peers in math and geometry. He needs to work on his creative writing and spelling. It is important to get a sense of the "playing field" in order to compete.

The functionality of his classmates fluctuates. It is considered an academic program, and they try to instruct at grade level, but obviously there are a variety of issues. Now, I get this info from Isaac, so how accurate it is might be subjective. Isaac tells me who he is "better" than in subjects, and how it surprises him because that classmate is older than him. Most of the kids are ASD (hey, it is a party), but there is also a mixture of other issues; Downs, oppositional disorder, etc. There are kids in his class who would not be able to be mainstreamed. Period. And then there are a couple of kids who have been fully mainstreamed, and are no longer in the SLC class.

Olivia will not be in Isaac's class, obviously. And I have not gone next door yet to talk with the K-2 teacher, since we are still not sure about Olivia's placement. I have some quick impressions of this class though:

It is less structured, softer, gentler. The kids seem happy and attached to their teacher and aides. The teacher has taught this class for years and has a great reputation. In fact, Alameda has a well regarded SLC program. Isaac's teacher, Mr. Kroswek, is new this year, but has experience both as a teacher and as an ASD specialist. He is still finding his feet in the classroom, but things have gotten smoother as the year has progressed. Overall, we are happy with him.

It is interesting to note that the K-2 class has far more girls then the 3-5 class. Are they easier to mainstream? Will have to ask that.

Will Olivia be there? We are assuming so. Our home school is Sabin, and I received a call from Sabin about having a meeting about Olivia's placement there. I emailed the specials coordinator back (he also works at Alameda, and I have met him before), to let him know we had concerns that she would be able to be mainstreamed (as Isaac was back in Kindie) at Sabin since there are few supports for her. Alameda has the nearest SLC class in our cluster. The assumption is that she will start in the SLC K-2 when the time comes, next door to where her brother is. Will find out for sure shortly.

Sorry folks. That went on far too long and I am sure there are more questions, but I have to make dinner and my mother is in town and already annoying the sh*t out of me. It is her job, just as someday it will be my job with Olivia. Circle of life.

Bedtime Conversation with Eight Year Old II

For years I have been watching the wheels spinning in Isaac's head as he contemplates how to phrase a question or get more information from the people around him. The excitement last fall was when he went from asking "what is your favorite color" to "WHY is that your favorite color?"

So these bedtime conversations have been no less then thrilling. So need to share. Especially in the light of reading his previous IEP's.

Last night it was a continuation of his fascination with Benjamin Franklin. "So what did he look like? Why was he so important? What did he invent? Can I invent things too? Do I need to go to college to invent? Can I invent a time machine? How does a time machine work? Mom, would you go into the past or the future? I would go into the past to when everyone was born to see that. How do you get to be on money? Will Obama be on money?".

Please note all of the "Who's what's when's how's". I even showed him how to research Ben on wikipedia to get more information. At times, I wonder what has changed in him to make this contemplative leap. But honestly, I believe his brain is maturing, just like the rest of him. And it is good times, friends. Good times.

His IEP is in a few short weeks. The next "Big Step" is on the horizon (back to more mainstream classes). Need to remember these bits for when I am sitting in the meeting surrounded by what he can't do.

Me, Schmee...

Am half way through a glass of wine and just realized that, wow, I haven't eaten anything today since a Special K breakfast bar at 8AM. So am half way through my FIRST glass of wine and feeling as if I just polished off my third. Yeah for the cheap date!

Mondays are interesting. They are the most mommy-abusive of the week. Getting ready for school, drowsy kids, rush rush, running around, therapy in the afternoon for one, a new martial arts class for the other, husband working laaaate, and once again I have forgotten to think about the basics. You know, like eating. And the sucky thing is that I am not even getting a benefit for ignoring myself. Saddlebags? Check. Pouchy tummy? Check. 'Cause when I do remember to eat, it is crud food supplemented by the occasional V-8.

And the closest thing I have had to a fruit today is the fermented grape in my drink. Yum, but feeling a little loose and blurry. Fun when it is a Saturday night with the girls, not so fun when it is bath time. Dear God. Will I end up a story on the Nancy Grace Show? "Mommy Drunk and Blogging while 8 year-old Drowns in Shower"?

Hey, it could happen.

So I am not doing the best job of looking after myself. But the kids are sleeping through the night, are doing well in school, are have success in their various therapies, they are pooping (hey, you know how important that is in the ASD world), I have two more weeks to prep for the first of this years IEPs (and yes, there is always more than one per child in my world) and it is my hubbies turn to read to the kids at bedtime tonight. Will finish my wine and stop bitching.

To IEP or to IFSP: That is the Question!

So O's transition meeting with MESD and PPS is coming up, and the discussion on the table (okay, on my side of the table), is whether or not my soon to be 5 year old is starting Kindergarten in the fall (the "where" is on the back burner a bit, but could be stoked at any minute).

So I am working on the Pros and Cons.

Pros:
Well, she is almost 5.
She is very verbal.
She is catching up academically.
She is almost potty trained.

Oh God. Wait. My "Pros" list is starting to sound like a "Cons" list. Will start with the Cons.

Cons:
She is still prone to toilet accidents.
She still has a hard time in a group of over 5 kids.
She can only identify some numbers and letters, but we suspect she knows more.
When overcome with social anxiety, she hides in a corner of the room.
She needs to be monitored, will sometimes take off.
She has a hard time sitting in circle time.
She is so freakin' tiny. She is still wearing 3T's, and weighs 32 pounds soaking wet.

Pros:
She is getting better at ALL of these things.

Miss O is having fewer accidents. She is starting to articulate when she has to use the bathroom. Now, O is very comfortable with her small class and is starting to actually make friends and have reciprocal interactions. Her anxiety keeps her from telling us all she knows ("I don't know, what is it?" is a common response, even to topics we know she knows), but she does learn things. She no longer hides when she enters her classroom, although we still have to coax her out in public, and she now knows that she can't take off on her own, although we still have to practice this. And she sits in circle now, but only just.

So there are pros wrapped up in the cons. But she needs more time and maturity to get there and have success in K.

And there is a little parent-guilt. When we were sitting in Isaac's first IEP meeting, all so optimistic about Isaac's transition from MESD to PPS, I think we ended up pushing a kid who just wasn't ready. I am terrified we will do it again.

Petrified.

I need wine.

Welcome to IEP-land. The Sh*ttest Amusement Park in the World!

Ok ok ok. Exaggeration.

Or is it?

There is a House of Mirrors, where you think you have agreed on a clear path for your child but end up cornered between IEP goals and limited staffing.

There is the Haunted House, where the (budget) slashing might be metaphorical, but no less bloody.

Of course, right past (we'll do it) Tomorrow Land, is Fantasy Land, where you actually understand what all of those percentages and minutes on your IEP stand for.

Lastly, there is The Big Scream, IEP-lands famous roller coaster, where in-between wanting to scream at PPS for forcing your child into an environment you know will not work, you feel like losing your lunch from the stress of it all.

And the price of admission is your heart, your soul, your pride, your dignity, your sanity, but hopefully not your childs' future.

Good Friend Stars

Isaac can be a good friend. He is sought out in his class by others to sit next to, to play with. Isaac can be a great friend, when he likes you. If he doesn't like you, he can be a real sh*t head.

That is what we are finding out. Now, I never ever ever thought of Isaac as the Innocent One, or the Victim, or then anything else then what he is - a young boy. They can tease, they can be sneaky, they can play favorites. And in a typical world, that is just being a boy. Not great, but expected.

But in a class of social and behavioral issues, this is a hot topic and currently causing all kind of problems. These days, if we are not calling for an FBA (functional behavior assessment), or an expulsion hearing, it's all manageable. Still, I feel terrible that Isaac is part of what is causing stress in G (and it is a two way street I've been told, but at least I can run a detour on my end).

So, we are creating a Good Friend Award for Mr. Isaac, with the stress on stepping out of our comfort zone. Being a Good Friend to someone we like is not hard, but being a Good Friend to someone we have a hard time with (say, like my Sister-in-law, who I snapped at and made cry earlier today - yes, I apologized and made up for it, but am still feeling horrid about it) is being a really Good Friend, and will be rewarded. If he can be a Good Friend so many times in a week, he can pick something from the prize box. Will see how it goes...hey, at least this particular behavior might not be from his ASD. He might have just inherited being a sh*thead from me...

Your First IEP

On Tuesday, Jan. 18th, SEPTAP will focus their general meeting "Writing Effective IEPs". 6:30-9:30, Beverly Cleary School. Highly recommend anyone with kidlets entering into K this fall to try to attend or at least to touch base with a parent who has been through a few IEP's. 'Cause, folks, I could have used it myself when I was sitting down with the crew to write up the first one for Isaac.

Not that it was such a bad thing. We were surrounded by so much great feedback, such enthusiasm for Isaac's mainstreaming into a typical class at Sabin, and they were saying everything we wanted to hear. "He'll do great, with just a little direction. He will just need an aide for the first few weeks, just for the transition. There should be no problems at all. We will discuss all of this with his new teacher weeks before he actually starts." Like a virgin being deflowered, we were hearing all of the stuff we needed to hear to get us to cave in with a smile.

And so it started. Within 4 months of starting in K, things got rough. And you all know the story. 4 schools in two years. An expulsion hearing. A stint at Pioneer.

It made me sit down, with 20/20 hindsight, and ask what we missed. What we missed was so f*cking huge as to be an embarrassment.

First: we allowed Isaac to attend a school (our neighborhood school, which is Sabin and has a growing good reputation and engaged parent population) that lacked any real special ed program. What it had was one person in a K-8 program who specialized in reading problems in typical kids. And she tried to get him discontinued from spending time with her because, I realize, she was not equipped to handle an ASD (or much else, for that matter). When problems started to arise, the school was not able to handle it.

Second: we were not fully informed of options. I did not even know about CB programs until his K teacher mentioned them, 5 months into the school year. CB programs are offered at some, but not all or most, of schools, and are equipped to handle issues as they arise and even recognize them before hitting boiling point. And, good luck finding info regarding these classes through PPS. They don't easily offer up info, but dammit, if I had pursued options in that first IEP meeting, there would be no way I would have let Isaac attend a school without one.

Third: I was too easy giving up my game face in that first IEP meeting. We both wanted to hear that Isaac was a star, that he was going to do fine. I did not ask "What will we do if things go wrong? What is our plan?"

IEP's are chock full of details, broken down into so many minutes of this or that shall be given per month to whatever. WHATEVER! Main question I will ask regarding O's first IEP is this: What are her support systems? Who will be there to catch her when she stumbles and I am not there?

On the Other End of the Stick

So part of the Dark Days of Isaac last year was that Isaac was being aggressive with a classmate that he was being teased by. This aggression lead to a behavior plan and eventually to a his expulsion hearing, and attendance at Pioneer. So we know all about aggression, all about how hard it is for the child and his/her victim.

Yeah.

Now, Isaac is getting a new perspective. He is the victim of the aggression of a classmate at Alameda, and how he has handled this has been wonderful and heartbreaking.

G (the other boy), has a hard time. He has a hard time with impulse, controlling his feelings, and competition with other kids. You can see him struggling with it, and man, do I feel for him and his family. His mom has admitted that this continues at home, and maintaining friends and having play dates has been nigh impossible, and so exhausting that she has just stopped for the time being. The teachers are aware of it, and trying to manage it and keep Isaac and G separated as much as possible.

But they can't always be at a distance. This has been happening for a long time, and for the most part Isaac keeps away from G (and he is so proud of this - Isaac of last year would have hit back without considering the consequences). But since our return from Winter vacation, it has gotten to him. He has not hit G back, but instead has responded with tears and anxiety, announcing today that he "didn't want to go back to school until G goes away!" He is beginning to crack a bit, and our concern, and one that we shared with his teacher, is that he might lash out and end up back in a bad space.

What to do, what to do. What G really needs is a few months with with Mrs. Heidi at Pioneer, but there is no way I can say that to anyone. None of my business, right? Argh. Will have to contact Ms. Niki and ask what she thinks.