Saturday, December 18, 2010

Sunnyside Sensory Preschool, End of Session 1

Leaving Early Intervention and having Olivia attend a private preschool was an experiment. Her small, lovely little program at Edwards was closing, and the preschoolers were being shuttled to different larger programs in various Elementary Schools around Portland. She was doing OK at Edwards, and she loved her teachers. But it was a delicate balance at times, and we were still struggling with a lot of basic things - potty training, counting, alphabets, shapes and colors. Going to a much larger school with a much larger class just scared us to death.
We were lucky that a couple of her teachers decided this was the time to try an experiment of their own. Could they create a better environment for socially struggling children on a much smaller scale, with the same services and typical peer interaction, and see more progress in these kids? So Sunnyside Sensory and Art Preschool was started, and Olivia started attending 4 days a week back in October.
And with the end of Fall session, it is time to assess.
Lets see. Olivia is suddenly potty-trained. She goes days without an accident, at school and now at home. This is still a shock for me. I was beginning to wonder if we would be going straight from pull-ups to Depends (TM) at some point. She started counting to 5 on her fingers, and just the other day, she counted to 10. And recognized the written numbers. She knows her colors. She sings the "ABC"s to me. She has prolonged reciprocal conversations with others. She talks about what she did at school that day. She talks about her friends, and no longer shuts down at drop-off. In fact, she only shows anxiety at pick-up if she was having fun and doesn't want to leave. Twice a week a teacher from MESD comes to her school to assist with speech, OT, and other items on her IFSP. And they too have noticed a change.
Oh joy! There are a multitude of factors I am sure that contribute to the Emergence of O, but nothing is more important than feeling safe, supported, and valued. So we got a winner, folks. Now, this is Preschool, and I have already started to receive a slew of letters from MESD and PPS gearing up for the transition of O from one to the other. My reaction to these letters is totally neurotic ("yeah, that's what you think, suckers. I will decide what goes on, when and where she does" - said loudly in the kitchen with my husband peering in asking if I am OK), but that doesn't change the reality of decisions to be made in the near future. But right now, one week before Christmas, I am happy and at peace.

OHSU and Child # 2

I just love signing my kids up for studies. Am I sick? Is there a little Munchausan by proxy issue? Do I view my brood like bacteria in a petri dish?
Actually, I am prone to saying "oh Hell, why not". Here we have two kids, brother and sister, both on the spectrum, with similar issues translated differently due to what? Gender differences? Personality differences?
Olivia just started the OHSU Communication Study at the Beaverton Campus. 8 sessions, each evaluating how she communicates and how she absorbs what others are trying to communicate. Isaac participated in this study in the Spring and it was a good experience, and at the end we had a priceless piece of paper in our hands - an intense evaluation of how Isaac thinks and learns, 20 pages long. We applied it to his IEP, with great results so far.
So it is her turn. So far they have tested her hearing and vision, to confirm that these are not limiting her communication. Now they have started on her cognitive skills. This step raises the Kracken of Worries for me - what kind of playing field do we have, what basic tools are we working with? Although I know better, that evil statistic I read 4 years ago still lurks beneath the surface "70% of children diagnosed Autistic show signs of Mental Retardation". How much (if at all) is O affected by this? What are our limitations?
Of course, if OHSU finds that there are signs, I will ignore them anyway. I am good at that. I will assume she is typical (just as I do with both kids now), just taking a different route. But still...nope. This study will let me know in what way she takes in information best. And I will use that information to tackle her upcoming IEP this spring (holy shit, am not ready to go from IFSP to IEP yet with her).

Friday, December 10, 2010

Liar Liar II

So I am just paranoid, and Isaac has not been exhibiting a tendency to exaggerate or lie at school. So maybe the tales told at home are an example of the growing narrative in his head (in fact, he sounds as if he is reading from a text - including throwing in phrases like {"and G was mad at R", he said}.

Which brings me back to my age old problem, how to recognize an ASD behavior and a NT behavior. Or, better put, learning to recognize when my kids are JUST BEING KIDS, dammit! I really need a hobby.

I will talk about it to his Social Skills Teacher at the Artz center, of course, to make sure his exaggerations are not impeding on his communication skills.

Wednesday, December 8, 2010

Liar Liar Pants On Fire

Now I have read a few books on ASD (heh, a FEW). One of the reoccurring themes is how honest the child is, how the concept of lying is totally foreign to the average Autistic Child.

Yeah yeah. Does that mean that Isaac is really not ASD? Is Doc. G right with the re-dx? 'Cause MY child is just full of sh*t these days. I mean, seriously need some hip-waders.

Now, just like any other child, when in trouble and cornered, he would occasionally eliminate a few facts. He would tell us what happened but skillfully delete the part where he pushed his cousin, etc. This started a few years ago, maybe around 5, and was rare. But the last few weeks, for whatever the reason, it has been coming fast and furious. And not only when in trouble, but just in the retelling of his day at school, to show off to friends, even talking with his therapists. I need a canister of Morton's Salt anytime he talks to me (a grain just isn't gonna cover it!).

Of all of Isaac's phases so far in life, this is the one I can identify with. Let me explain. I was a military brat for the first 8 years of life. There was a fair amount of shifting and moving, but when on base, it was ok - I was not alone. Then my parents split up and I started a new school full of kids who had known each other all of their lives, it was tough. To top it off, I was shy, insecure, and pretty funny looking with giant owl-sized blue glasses and frizzy hair.

So, I elaborated a bit, thinking that it would make me more interesting. This continued for a few years, actually, and with the obvious result that in the end, none of my new friends could believe half of what I said. Not a solid social skill. And one that Isaac has adopted. Just like this former Army-Brat, he has shifted about in schools - he is currently in his 4th school since Kindergarten (he's in 2nd grade now).

I don't want him to repeat my mistakes (well, not all of them). So I have to think how to approach this. Telling his that honesty will not get him in as much trouble as lies is one, of course. Or that his friends will doubt his tales. What else should I say?

Oh THAT'S right - I have a team now. Calling Dr. G and his Social Skills teacher, Ms. D and setting up an appointment. David and I don't have to do this alone. We are not re-creating the wheel every time there is a challenge.

Will keep you posted.

Monday, December 6, 2010

Sensitive Santa @ Lloyd Mall: A Review

I found myself bellowing up the stairs at 8:30AM on a Sunday, something that this Heretic does not do on a regular Sunday -basis, for everyone to get up and at 'em: it was time to visit Santa.

For Olivia this would be the first time. Sure, we had peered around the corner at various Mall Santa's over the years, but despite my nudging, neither child was all that interested in standing in a line to sit on a strangers lap. And to be honest, I didn't have the greatest memories of that experience as a child - either I was scared and crying, or I felt uncomfortable and wished it to be over soon (Oh God, sounds like I am describing my first sexual encounter!). I never pushed THAT hard.

Isaac had been once before, under the power of a determined grandmother, when he was an infant. I don't even know where that photo is - good mothering, huh?

So we threw on clean, non-clashing clothes and hustled down to the Lloyd Center Mall. It had been going on for an hour already (I recommend going at the start of it - apparently 8AM was fairly empty, but we had a 30 minute wait).

The mall was empty save for the families, music was off, lights were low, and it really was a calmer experience for the kids. For the parents, not so much. There was a lot of checking out other families, talking about our experiences (where do you go for speech was a common question asked), soothing, distracting, and primping of children. And ages were across the board - from toddlers to teenagers. I am glad we went. But we will only go next year if the kids ask to.


Gonna sound bad now. Oh, I am not a bad person, I swear. But it was a bit scary for me. I looked at the older kids and wondered if that was going to be my future. One teenage boy had such a hard time that when it was his turn with Santa, he just dropped to the ground and had a tantrum. He was so large, trying to physically moved him would likely have hurt either him or someone else, so he was allowed to calm down on his own, a sight that agitated many others in line. But then, that was the beauty of it all. We got it. Each one of us. We knew that he just needed to find his calm space again, and all would be right with the world.

But still, is that going to be Isaac and I in 5 years? Are we going to hit a wall in our progress and not be able to hurdle it? I look at him-here he is doing his homework, fractions for crying out loud, he is not severe, he talks and shares and cares. But his anxiety can be a deal breaker, and will the hormone surge of adolescents see us out in public managing through a shut-down?

I don't think so. I hope not, anyway. Joining our little community this Sunday, nay, our Band of Brothers, reminded me that there are no guarantees.

And it freaked me out ever so slightly.

Will see about next year.

Tuesday, November 30, 2010

I Really Hate it When He is Right...

As predicted by my husband, I have burned out on the twice weekly schlep to the Heart of Beaverton for Isaac to attend the adapted OGA and Martial Arts class. That, combined with various other therapies and special classes made me feel as if I should just MOVE to the suburbs and get it over with, but dammit, I just can't do it. I am an Urban Gal. I do not like spending quality time in the car. I am allergic to strip-malls.

All of this dark, gloomy weather has not helped.

So I have put those on hold and am looking for closer replacements. One possibility is the Lotus Seed, just one mile from my house. They have a Capoeira for Children class twice a week at a more reasonable 4PM-5:30PM, so we are going to check it out. And, no, I have no idea what that is nor does the name "The Lotus Seed" fill me with anything other than annoyance, but I will try to be open minded (can ya give me an "ohmmmmm"). Am not being very open minded these days. Much easier to be annoyed and grumpy.

Or maybe it is because until I recover from my pinched nerve, the Doc has me on muscle relaxers, and they are making me feel useless these days. Or maybe it is because for the life of me I can't find Harry Potter Lego sets on sale anywhere. Or maybe I am still traumatized by agreeing to go Black Friday shopping with my in-laws and having spent the hours of 12Am-6AM in various lines at Jantzen Beach has thrown me right off the holidays.

Yep. Need a drink (which I can't have because of the muscle relaxers).


Thursday, November 18, 2010

Sensory Santa!

ASO just announced there would be an opportunity for kids on the spectrum to have their own Santa Visit at the Lloyd Center, on Dec. 5th from 8AM to 10AM.

The idea is that the kids will have the mall pretty much to themselves, and provide lower lighting and a calmer environment for those who are a bit sensitive or easily overwhelmed. Each family that attends will receive a free photo with the Big Guy himself.

Isaac visited a mall Santa once, when a little guy. But that was about it. My kids usually look on at Mall Santa Lands with wonder but I can never get them to join the Que to participate. Not that I blame them. I have a whole series of pics of me on Santa's lap looking a bit underwhelmed, wondering where my F%*#@g candy cane is. But we will go. If you too want to give it a go, contact Heather Munro at:

I stopped believing in Santa on my 8th Christmas, when I caught my dad putting together a dollhouse in the middle of the night, and he came clean rather then go into a production about being Santa's Helper. This is Isaac's 8th Christmas. I wonder, how will he take it? "You mean you've been lying all of these years?".

Wednesday, November 17, 2010

Special Education PTA: First Impressions

I left the meeting last night with two very obvious thoughts:

"They (we) need more members".
"They (we) need to meet more often to be effective and address all of the issues".

The topic of last nights discussion was "Conflict Happens", and there were a number of speakers from a variety of resources to discuss what a family can do when there is a disagreement with the teacher, school and/or district. A very good topic indeed. But damn, was it hard to STAY on topic for pretty much everybody. I could see some of the heads getting frustrated as we strayed from funding to class size, using the meeting as a forum to air frustrations. Does this happen at other PTA meetings? I have joined but never attended a typical PTA function. Is it because we just, as families with an IEP, have way more baggage then average?

Yes. But I also think there is one more factor: SEPTAP meets once every two months. How the hell can we maintain momentum and discuss issues when we meet maybe 4 or 5 times a year?
And of course we go off topic - when there is only a limited opportunity to discuss things, all of the crap gets laid out on the table despite best efforts.

So I joined SEPTAP, signed up for two committees (Hospitality and School Rep and no, I have no idea what they actually do), and am going to try to make a few suggestions to help. Like, informal meetings that meet once a month. And Social Skills groups that meet once a month at the grade school level to engage with one another.

Any other ideas? How about reaching out to the parents at the EI level, introduce ourselves, and make connections? We have been out of EI for over two years with Isaac and I just learned about SEPTAP.


Monday, November 15, 2010

SEPTAP Tomorrow

At Beverly Cleary school, 6:30pm to 8pm. It will be my first. Please let it be less rant-y then the MPAC meetings! it BYOB? Can I bring a cocktail? Hell, even our Cub Scout troop parent meeting happens at Laurelwood Pub. It is not a bad damn idea. Hmm. Cub Scout troop - wow. I have totally deserted that activity this year. Am I bad for saying it was a little creepy and lame? Come on people, priests in Eagle Scout uniforms is just not right!

Why Can't I Be More Angry?

I Facebook-Lurked on a tirade today between two parents, one I know, one I don't know, but both with kids in Special Ed in PPS.

They were pissed (for lack of a better word). Yelling, kicking, screaming pissed. About lack of funding, about PPS seeking a maintenance of effort waiver from the Federal government because they can't meet guidelines, about available funds not being used for education but instead being diverted to lawsuits that fight educational demands.

Yeah, I know it ain't good.

Still, watching their angered interchange actually upset me. I felt...defensive. And no, I do not work for PPS.

Why were they so angry? I am all about expressing feelings, but this level of anger, as justified as it might me, really seems wrong to me. So I pondered and I wondered, all morning long. Why was I disturbed by this?

And then, as I picked Olivia and then Isaac up from their respective special Ed programs, smiled and chatted with teachers and aides, I finally figured it out.

Waste of energy. They were wasting energy, a nuclear amount. If one of my own kids had such a meltdown, it would inevitably end with a monster nap. How could we take this energy and put it towards something that they (and we) can actually use? I have met a few parents during this journey that have ranted in a similar fashion to me, and when I asked a few key questions, I had found out that as much as they love their kids and want the best, ranting is as far as they got in communicating their frustration to PPS. And if their ranting is anything like my husbands ranting at the Blazers during a game, I doubt it is every effective.

I just refuse to get that upset anymore. I did during (what I will start calling) the Roseway Incident, and man was that exhausting. It was not good. I don't think I can do it again so easily.

Thursday, November 11, 2010

It's Been A Good Week

Oh, I love weeks like this.

There are weeks when AUTISM has been branded on everything we do, when Olivia cries at every peer encounter she has, when Isaac suddenly goes into orbit and anxiety colors everything hes sees some particularly horrid color of red. On those weeks I wonder when I am going to crack, if I need to put them both on meds and hide myself behind prescriptions and full-time ABA therapy.

Then there are weeks when we almost forget we are on the spectrum, when because of some cosmic balance all is well. No panic attacks. No spiraling. Actually, the whole month of August was like that (we also did not have school, therapy, or any other challenges).

But this week, this week of life as usual, was full of encounters and challenges and therapies, and we handled it very well. We, of course, since I am half of the problem at times (I get anxious myself, frustrated, or cranky sometimes when things go awry).

Olivia had school, and although shy-as-always, managed to go into the classroom with her head up and have a good day with her classmates. She went to a friend's bday party with 4 other kids and while shy and hesitant to join the kids, she slowly emerged from her shell and came to join the festivities. Afterwards, she could not stop talking about going to M's house and playing with her friends.

Isaac had his usual challenges, especially at recess with his CB class. But he started telling me about his day in detail, who did what, who got in trouble, who got extra stars, and what he learned. And just being able to get himself to share with me seems to have helped his anxiety from two weeks ago. He seemed satisfied that all was right. Then, on Wednesday, he attended his first Typical class in two years. Granted, it was music class, but he enjoyed it, it went well, and soon we will add PE and Math with the NT 2nd grade class.

So this week was a balance. We handled our ASD, managed it. Took a bit of control. Beat that bastard down, told him who was Lord of THIS manor.

I even met my own ASD challenge and came out OK. And trust me, that doesn't always happen. I met with our Developmental Ped this time re: Olivia. It is odd to lay it all out on the table. I saw all of Olivia's quirks itemized, and instead of wanted to cry, or even worse, tell stupid jokes to calm myself down (yes, nasty habit), I walked out of the meeting with Dr. G feeling pretty good.

Yeah baby - we got this.

Sunday, November 7, 2010

SEPTA meeting coming up: Conflict Happens: What to Do When Things Go Wrong

PPS's Special Education PTA is having a meeting at Beverly Cleary School in NE PDX, Tuesday November 16th from 6:30-8:00PM. As part of the general meeting, they will have a few speakers to help parents manage conflicts with a child's teacher, their school, or district. Diann Drummond will be one of the speakers, and she was one of my personal angels when Isaac was going through a pretty bad patch last year (bad as in Police, EMT's, and an expulsion hearing).

Yep, pretty bad.

I would recommend any parent whose child is in PPS or expects their child to join that party soon to come. This will be my first time as well.

Wednesday, November 3, 2010

I'm Trying

I have been fussing over my most recent posting for days now. Now, I am never the most eloquent of bloggers to begin with, but when I am truly stressed, I seize up a bit.

Isaac is starting to show real signs of anxiety at his new school. It was to be expected, and I have been looking for signs for the past 3 weeks. I like to live in la-la-land, and had hoped that we could skip this part of the new transition. And to give the kid some credit, the anxiety has been only slightly visible at school. Instead, home has been a mine field. He's been high strung, making silly demands, defiant, and argumentative. It is a departure for him.

So this is what I think it is. At school he has been surrounded by kids with their own behavior issues. Every day, he has to stop and remind himself to NOT push, to NOT get angry, to NOT freakout when someone else in his class is pushing, angry, freaking out. Yesterday he said one of the boys punched him in the stomach. "But it didn't hurt, mom, and I told Mr. K and (the boy) got a time out and no stars for the day". Oh, so proud. But all day at school he has to be on high alert, surrounded by kids who are fighting their own behavior demons. At some point, will Isaac crack? Is it too much to be in a CB class? Have I pushed him over the edge with the addition of Gymnastics, Karate, and Piano? WTF am I doing?

Then there is Olivia, who for no apparent reason (other than it is the fall, and she did this last fall as well), has decided that she does not like other kids near her age (older kids and her brother are OK). She runs behind trees, tries to hide under my shirt/skirt, and has socially shut down. Argh. When this happened last year, we finally had to pull her out of school and take a two month break (while Isaac was being home schooled having been kicked out of Roseway and awaiting a placement decision). Oh, fun times. This time, we are getting therapy and pushing through.

Argh again. Anxiety has been one of the biggest issues we have dealt with in our little ASD bubble. And it is not going to get any easier as the get older, is it?

Thursday, October 28, 2010

OGA Halloween Gathering Reminder

OGA Social Skills group is meeting again this weekend, Sunday, same bat time, same bat place. Yes, get your ghouls together at the satanic hour of 9AM to terrorize the suburbs once again. Link to the right.

Gack Yuck

Plague making it's way through the household, and I am the most recent victim. Trying to pull it together before Halloween.

I have had the blues lately. Not depressed - seems to harsh a word. Just blah blah blah. Isaac seems highly strung lately, Olivia is stressed out every time I drop her off for school. I worry that things are going off again (do my kids just hate the month of October?), and am trying to stop it all yet not over react.

So excuse me if I am not keeping things up to date. Still trying to decide my approach. And I am quite the drama-queen about these things - way back, back in the dark reaches of my brain, I am preparing for the worst. What is the worst? Am not sure about that either. And my flu is not helping...

Geeze. Need to perk up a bit.

Friday, October 15, 2010


First there is the blood work. CBC, Ferritin, then checking for lead levels and heavy metals.
Then, the genetic studies. High Resolution chromosomes, and a Fragile X Probe. And to round up this first course in using Isaac as a Pin Cushion, a Thyroid study, Free T-4 and TSH.

Yep. Why do they bother explaining these things to me in the office? I can never hold the information, and spend the following two hours hunting through trying to sort it out.

But what we do have is a New Diagnosis of PDD-NOS (wiki it yourself), with a side label of Communication Disorder. But since the ASD diagnosis was accurate at the time it was given 4 years ago, we are keeping that on the books too.

"Hi, I am Isaac. I have PDD-NOS with a Communication Disorder and a previous diagnosis of ASD."

Hi, I am Isaac's mom, and right now the DSM-IV can bite me.

I'll me mature about it tomorrow. It has been a big week.

Tuesday, October 12, 2010

Welcome to Alameda Elementary School

Yesterday was Isaac's first day back in a Typical School. I know that I am making a huge deal about this, and yes, I do err on the side of exaggeration. I'm Irish, it's my heritage.

But it has been such a long twisted journey to get back to square one. Things started to fall apart around Jan. of his Kindergarten year, so 22 months ago. 22 months to get back to where Isaac was yesterday.

It went well. No, it went great. He was excited to be there, and had a blast in class and even the dicey minefield of recess and lunch. According to his transition aide from Pioneer - "He was the best behaved kid in the class, easily", and his new teacher "I could have used Isaac at the beginning of the year". He was used as a role model of appropriate behavior for the rest of the CB class. He did well in his academics. He is on track to leaving the shelter of the CB class to sit in on the academics of the typical class.

So of course, I am paranoid. Let the honeymoon wear off, some challenges start (he is not really being challenged at the moment), and we will see.

Dr. Gertz, Our New Behaviorist

Is anyone else prone to this? You know, months of laying low and then suddenly throwing everything you can find at Autism?

So after a summer of sitting in the backyard eating strawberries, I am back in the game. We found a Behavioral Developmental Ped that we like and have started going to sessions. I will call them sessions since that is what it feels like - visiting a shrink. The first one was on Thursday last, with just D and I relating Isaac and his history. This Friday, we all go in as a family to be discussed and observed.

And trust me - the parents and siblings are as much under the microscope as Isaac. It reminds me that as much as we discuss the biology of ASD, with diets and vitamins and massage therapies, with GI and bloodwork and sleep tests done, that from the start, Autism is a psych diagnosis.

Still in the early stages. Psycho therapy has been mentioned, maybe meds someday. But it is still to early to tell.

What we did get from Dr. Gertz (@ Artz Center), is that while it sounds as if the Autism diagnosis was accurate in the beginning, if he was re-diagnosed today, it would be PDD-NOS. Sound familiar, Tina? Sounds good, right? Not as severe? Who knows.

But what I DO know is that we have been dealing with a little kid with an ASD. And this newly minted 8 year old has suddenly decided that he is a Big Kid now, wants to take the bus to school, wants to take showers instead of baths, and thinks kissing is yucky. And his life is just going to get more complicated as he gets older. So what can we do to help him?

Thursday, October 7, 2010

Super-Duper Kick Ass!!!!!!!

Oh, am soooooo excited. Finally, after lots of calls and messages to Portland Parks and Rec locations all over East PDX, I have made contact and found the enthusiasm I was looking for.

Yes, Patty of Sellwood Community Center, I love you.

It is still a bit early in the process to say when the Social Skills Group will start meeting, but we have a where folks, and a champion to help us start it up.

So for those of you who don't know, and that included me until this morning, Patty Gaines helps teach the Gentle Start Preschool at the Sellwood Community Center, which I will post a link to.

It is just what it sounds - a preschool for kids 3-4 years old who might be a bit overwhelmed by the typical preschool experience. We talked about the community need for more programs for these kids similar to those for the typical kids - Indoor playgrounds, maybe other classes such as social skills groups, game playing, etc. We talked about needing it maybe once a week, including one or two meetings a month on the weekend for a chance for all parents to participate.

She said she was excited to work on it. And you know I am excited. So all by dears, lets fill those spaces. Anyone who is interested in participating in such a program, email me at Pass the word on, send them my way. We are just looking for names at this point to get an idea of interest, no need for commitment just yet. I am hoping that with enough interest, we can add classes in other centers in East Portland.

Go Team!

Will talk about the other big event today, the meeting with Isaac's new Developmental Behaviorist, after I calm down a bit.

Tuesday, October 5, 2010

Almost Back to Normal (Normal for Us, Anyway)

Miss O started school again this week. I can't really comment on it just yet since it is only day 2, but O was less then pleased to be dropped off. I left her clinging to Miss Amanda. I have no doubt she will be fine - she is just P.O.'d that yesterday wasn't just a random event.

After drop off, I went and had coffee on Belmont with D's mom, Susie. As is usual when I have only had coffee and one 6 day old powdered donut for breakfast, my conversation was all over the place. But we did discuss the subject of Expectations, especially with the new preschool.

Now, to be clear, Sunnyside Sensory Preschool is focused on advancing social skills. That is what it is billed as, it is why the kids were selected to go there. But if you have looked at my previous posts, you know I am starting to worry that we are not doing enough (in EI, in private preschools, at home), to prepare these kids for Kindergarten. Susie shared this concern, as well as wanting to know more about what the students are doing in school, what they are learning and what they need to work on more.


Just got a call from Miss Amanda. The Drama Queen I dropped off is fine now, playing in the garden with the sad October tomatoes.

So happy.

So your assignment today, all of our friends who are in Kindergarten now or in a new EI program, is what do you like/dislike about it? Does it meet your expectations? Does it disappoint?

Sunday, October 3, 2010

Special Education PTA

How is it that I did not know that there was a PTA for families in Special Education here in Portland? I have been in the system for 4 years now, why did it take a trip to the Youth Games IN BEAVERTON yesterday to discover this?

I am glad, but still annoyed by how disconnected things are. Crud. Link to the right.

There For Each Other

Two kids, boy and girl, four years apart. So similar in so many ways, so different in others, both with Autism. Post-bath time comfort, watching a Scooby Doo cartoon, laughing then stimming a bit with excitement (Isaac clenches his hands together, Olivia makes a happy humming sound in the back of her throat).

My husband comes into the kitchen and says "Do you think they will call each other one day and talk about all of this?". Share stories of how it is to get through life with this little blip in their software systems?

I think so. It made me feel better that, like all soldiers, they will share war stories and help each other get on with their lives.

Saturday, October 2, 2010

Youth Games, Special Olympics Oregon - Who Would Have Thunk?

Let me state this again, in case it was not clear the first time around - we did not consider ourselves the Special Olympic Types. I am not sure what I thought that Type was, to be honest. Down Syndrome athletes? Kids in wheel chairs or leg braces? Who knows. Kids-with-bigger-issues, maybe.

But of the 6 kids on Isaac's soccer team for the Special Olympics Youth Games at the Nike Campus today, there was one with Downs, one in a walker, and the rest had an ASD.

So, in short WE are Special Olympics. Just because of sheer numbers.

We dragged ourselves out of bed this morning to be at B-town for the 8am sign-up, groggy with a birthday cake hangover (Isaac turned 8 yesterday), and were directed to the Tiger Woods Center at Nike (this lead to a lot of interesting conversations, by the way. Tiger still has that effect). We signed in, signed off, and were directed out to this massive grassy space filled with pavilions, balloons, and armies of volunteers in red shirts. We spotted the orange balloons (soccer), and a Frenchmen holding a number 31 (Isaac's team). A pretty young woman named Stacey introduced herself to Isaac (Stacey is a World Cup Winning Soccer Player from the US Women's team, BTW - many of the volunteers had something impressive about them), and off he walked over to the opening ceremonies with Stacey, hand in hand.

And that was Isaac for nearly 3 hours.

He worked on dribbling, defense, got to be the goalie, and did the Hokey Pokey with his teammates, completely independent of us. There were 6 kids on his team, and 6 volunteers guiding and cheering them the whole time. At the end, he was awarded a blue ribbon and had a big smile.

It was a good morning, and we will do it again, and encourage more of our friends to join us. It was truly amazing - there were more volunteers then there were kids participating. And I kept wondering why there weren't more. There was more than enough room for more athletes. So next year I must remember to get permission to put out posters and hand out flyers letting others know it is happening. I came across the event in the most random way - looking at one of those Metro Parents magazines at OMSI so that I wouldn't fall asleep while O played with flubber for an hour.

It was good. I am happy.

Thursday, September 30, 2010

Well, that could have gone better...

Oh, Miss O. How we torture you so.

I finally got Olivia to Peninsula School to check out Ms. Emily's EI class. And may I start by saying that it was lovely. It really was. The afternoon is a small class full of lovely children and wonderful teachers, in a light-filled room. Anyone in North or NE PDX looking for an EI program should check it out.

That being said, Olivia hated every second of it.

Yes, I know. Not only did she have a busy morning with social skills class and running her brother around, but then when she was begging and pleading to go home, I haul her off to check out the afternoon Peninsula EI class. So it didn't bode well. She was miserable from the beginning, but then it was made worse when she saw a little girl in the class having a hard time of it. She was a sweet little girl, but more severely effected Autism and would every few minutes let out a loud cry. And it shattered what little tolerance Olivia had with the new class. Olivia stood in the doorway, silently shaking and crying, overwhelmed with anxiety, until I conceded to the realization that it was just not working.

And yes, I know that we need to give it another try, and we will. But watching this class, and then watching the Kindergarten class at Alameda today getting ready to take their class pictures, I am suddenly convinced that she is just not going to be ready for K next year.

Kids run. Kids yell. Kids cry and go crazy and then have to be herded into nice neat rows by the teachers. And O just can't do it. She is still overwhelmed by unfamiliar kids and stressed when she hears someone crying or yelling. When Isaac would have a panic attack, he would lash out and run away. When O does it, she hides in a corner and sobs.

But I have a plan. Yes, I am voting for holding O back one year. It came up briefly once in conversation with my husband, and was dismissed, so I will petition again as the school year progresses.

I think O needs to stay in her sweet quiet Preschool for a year, working on her social skills and developing friendships. She is only really interested in other kids recently. Then, in the fall, I will enroll her in a public preschool, maybe even Alameda Preschool, with typical peers. K-test run. Then, Kindergarten.

What are the advantages? She is tiny. She has much younger classmates much larger than her (yes, I am thinking of you Tessa and Daschel). We need to work on her social piece and her anxiety issues (starting to see a Developmental Psych, next month).


(can you hear the crickets chirping?)

Ok. One. I was going to go back to work. Yes, pretty Princess Kristin and her nasty Anthropologie Addiction and desire to build the addition to the house needs at some point to add more than just charm and personality to the household (now, stop laughing. I KNOW who you are).

What to do, what to do...

Monday, September 27, 2010

Adventures in Kindergarten: Miss E's Story

EI is a nice safe place. Despite our concerns, as we let go of our little ones and let them walk into that classroom without our hovering (well, hovering TOO much, at least), we are safe in the knowledge that they will be cared for, taught, and loved.

And then they send us to Kindergarten.

My memories of K are shockingly warm and fuzzy. It wanders around images of finger painting, nap time, and the kid who ate the glue paste. I was surprised upon entering Isaac's K class and finding that it was very very different. It was very full - 28 kids. It was very academic. It was highly structured. You were expected to sit in your seat, sit in circle time, pay attention and keep your hands to your self.

In short, we were unprepared for it (and so was Isaac).

So you can imagine in this era of mainstreaming and budget cuts, we are anxious to release Olivia into the maw of Public School Kindergarten.

Others precede us, of course. With her permission, our friend T and her beautiful daughter, Miss E are allowing me to talk about their experience as they left Ms. Holly's preschool and entered into K this fall in their local school.

Just a bit of background...

Miss E is a smart little girl who is a bit socially shy but loves her friends and strives to add more. She does have a communication delay but she is outgoing enough to compensate for much of that. And she is used to the small and gentle Edwards class.

T was on top of this transition into mainstream K. She looked at various programs, talked to teachers, talked to advisers, and felt good and comfortable about her final choice for K. With apprehension but confidence, she walked into the K open house. There were two K classes at the school. And as of the first day of school, each class would have 30 kids each.

30 kids. Have you ever walked into a classroom with 30 5 year olds? And at an open house, where you can then add their parents/grandparents into the mix? In T's own words, "We were there at the open house no more than 5 minutes when it became clear that E was becoming agitated and we had to leave. E does not do well in large classrooms! What are they thinking? She has sensory issues!"

There are a few things to note about this first experience. In Miss E's IFSP/IEP, despite her sensory issues, it does not specify that she needs a small class environment. In the defense of the staff at K, they had no idea how many kids in the end would be in the class - many did not enroll until a few days before start of school. Because Miss E did not have that piece in her IEP, an Aide was not immediately assigned to her when the info about class size became known.

In her massive K class, there were two teachers, and Special Ed assistant. It sounds well staffed, I agree. That was not the issue, and is not the only issue for our shy kids. When in the face of 30 jumping, shouting, happy peers in a confined space, what will many of them do? Well, in Isaac's case, it was to push others (literally) away. In O's and maybe E's case, it would be to shut down a bit, always in the shadows, trying to block out the chaos. Neither would provide a happy child learning and making friends.

T did what all of us would do - freaked out. She sent off a barrage of emails to all she could think of about what on earth could be done. The principal petitioned the district for another K class, and everyone held their breath.

And it was granted. E is now in a class of 20 peers, with her teachers, class aide, and the relative calm of 10 less classmates. She seems happy, excited to get there, and having fewer sensory issues then was feared.

But T walked away with a few new tools in her school kit. One was to not think best laid plans were enough. She reviewed the IEP and is making some changes. The IEP is a contract, and everything must be stated and signed off on. Another was to have a back up plan for things that could go wrong, and have all of that stated before the start of class. PPS and MESD will always lean on optimism rather then preparedness.

We watch Miss E and know that at least she and her family are trying their best. One can only hope that PPS can match that.

Wednesday, September 22, 2010

OGA this Weekend!

For all interested parties, the OGA social group is meeting this Sunday at the new time, 9AM - 11AM. There is a 5$ fee per child, which is so worth it. The OGA staff that helps out volunteer their time, and are great. It is worth checking out.

I am still working on securing the location for an East Side group, but would love to get opinions from people who participate in the OGA group on what they like and what they would want to change for the East Side version. Sorry it is taking so long - had to go through channels and am waiting for permission from someone from Portland Parks and Rec to use either Matt Dishman or East Portland Community Center as a location.

OK, Step Away From the Ledge...

Good friend who has known me far too long (has it been 21 or 22 years?) came in to carefully lead me away from the edge of panic, to calm me down and hand me a chill pill. She also happens to be a Special Ed therapist who specializes in behavior replacement in the classroom, and works closely with ASD kids and para-aides down in Phoenix.

She came in from the side of the para-aides, in respect to their positions within the classroom and responsibilities to the children. Basically, she told me that most likely because Isaac is coming in with such good behaviors and is so high functioning, that they have not assigned a specific aide to him. The shared aides (the ones that seemed more engaged during the meeting), will likely be the ones helping Isaac when needed. The others need to know, of course, which is why they were at the meeting, but they have been assigned to specific kids and are more back-up personnel for him.

Ok. Sure. I get that. And I will come in with a smile and a positive attitude. But I optimism and assumptions are what got us here, and to quote my Kiwi pals, that road was as "rough as guts".

There is a Back to School night tonight at Alameda, and David and I are going so he can see the class and meet the teacher and aides. It is another opportunity to touch base and alter that first impression in a less formal setting. And on Isaac's first day at Alameda, I am stopping at Grand Central and picking up nibbles for the teaching staff in his room. I know, it is an obvious plea for clemency. But in my experience, a display of gratitude to the staff is a good start. Ok. It is a bribe. But even my friend said do it.

Oh, and did I mention Isaac is not starting on the 23rd now? Delayed by a week, so his first day is the 30th. And the reason is a positive one. Two of the kids are being mainstreamed out of the CB class and into the general population. Mr. P doesn't want Isaac to start until after the students have moved on, the class less in flux.

Friday, September 17, 2010

Transition Meeting Part II

It was good, I still have some worries, there were a lot of people, and I was surprised that the aides at Alameda didn't throw more questions out at the Pioneer aides, considering they are taking Isaac on.

Ok. Whew. Got it into one sentence.

It was good:

Because the teacher, the ASD specialist, and the transition team from Pioneer did an amazing job of sharing information and asking questions. We went over what went wrong at Roseway and what went right at Pioneer, and how those things could be avoided/applied at Alameda. We discussed how we would focus on his strengths and help him with his weaknesses. We talked about class structure and learning/teaching styles.

I still have worries:

The class is still finding its stride, and the teacher, his legs. The teacher also expressed one of my earlier concerns, that Isaac might be the most socially advanced kid in the class. We talked about how we can use that to our advantage (Isaac as role model, a role he relishes). Then they started discussing his eventual mainstreaming, and I told them to hold a moment on those thoughts. One transition at a time. Mr. P is still trying to work out his teaching method with kids that range from 1st to 3rd grades, and how Isaac fits in. I understand that all of this is new, and I need to be somewhat flexible.

There were a lot of people:

And I am not sure why. Some seem engaged in our introduction of Isaac into their midst, some seemed irritated that they had to sit there.

The Alameda Aides:

Oh, this is the one. The gut is churning, and I know now to listen to it. I was not impressed. The aides specific to his class did not ask ONE QUESTION. Not one. The aides shared by the two CB classes were great, asked questions, seemed to be part of the discussion. But Mr.P's aides - looked bored. Sounded bored. Were almost unfriendly (save for one). Then half way through the meeting, they got up to leave without saying goodbye. Come on people. You are role models here, molding young minds and behaviors. I understand they had to leave, but what happened to manners? You chose this job, after all. I was recruited, and I still manage.

So am sending an email and asking for another meet up, with the teacher and hopefully at least on of his aides.

Kinda pissed now. Will hold off on emailing until I let the wine breathe some more...

Youth Games, Special Olympics Oregon

So, in the spirit of full disclosure, I will say that it never occurred to me to look into an organization like Special Olympics. Blame NPR. There was a story broadcast two year ago about a Special Olympics Athlete who was suddenly considered ineligible because he was ASD, and Autism was not yet on the list of qualifiers. And I agreed - Autism just wasn't a "real" disability". It has been a fun trip on "da Nile", my friends.

When I heard about the Special Olympics Oregon event at Nike on Oct. 2nd, I was curious and took a closer look. Here was what I read under "eligibility":

"Individuals must be at least 8 year old and have been identified by an agency or professional as having one of the following conditions: intellectual disability, a cognitive delay as determined by standardized methods, or a closely related developmental disability."

Well, it certainly sounds like us.

So I signed us up. Isaac turns 8 on Oct. 1st, he likes soccer, and he qualifies. And I am on a kick this year to find and explore all kinds of resources out there.

Attaching a link to the right for the event, if anyone else is curious. If nothing else, it is something different to do, and we get to check out the Nike Campus.

Tuesday, September 14, 2010

Always a Bridesmaid, Never the Bride

Oh, poor little Miss O. Totally forgotten today, as I put together pieces for the transition meeting, worked on Isaac's B-day plans, and called around regarding Social Group venues.

Completely forgot I was supposed to take her to Peninsula to observe the EI program there. Never made it to the park, or the library. Didn't meet up with friends to play. Just let her sit on the couch beside me, surrounded by Charlie & Lola books, eating Ritz crackers, all day long.

Promise to be more of a mom tomorrow. Well, until 3:00pm, when I will drop her off at Sandy's and head over to the meeting.

But still, can't believe that she sat on the couch with me all day long without fussing or freaking, for hours on end. AMAZING!

Monday, September 13, 2010

Transition Meeting

If you have not had an IEP meeting yet, get ready. Your average IFSP meeting is a gathering of pertinent staff, usually the teacher, the OT, the speech path, and then the parents. It is usually a nice enough meeting, generally on little chairs at little tables in the classroom.

In comparison, the IEP meeting can be a complete cluster f*ck.

Sorry. A bit coarse.

So for example, we have from Pioneer one of the teachers, the counselor, the speech path. From Alameda, we have the teacher, one of the para-aides, the head of the special ed at Alameda, the speech path, and the OT. From Columbia regional, we have one ASD specialist, and possibly one more person from MESD. Then the family. And since I am on crack, I am inviting the PPS parent advocate who helped us when we moved Isaac to Pioneer.

I should take a pic. Will have to be a panoramic.

Still, I am feeling good. We visited Mr P's class on Friday, and spent the last half hour of the classes free time in the room. It is a CB academic class, so the students need a lot of support, need social skills work, but are academically at grade level. I don't know what exactly I was expecting, but I felt a little apprehensive sitting there in the back of the classroom, watching the kids finish their play and get ready for the end of the school day. Isaac already had his desk marked, so he sat down by Noah and waited for the bell to ring.

Now, I know it was only 30 minutes of observation, at the end of the day on the first week. So all of the impressions are a bit raw. But I noted a few things.

1. Some of the kids seemed to have more severe symptoms, and none were talking and interacting like kids do when in free time. Most were on computers or being redirected by the aides. This in itself is not alarming, but is worth noting.

2. The schedule for the day is pretty clear, and written on the board. It was carefully observed. There was one teacher and 4 aides, and it was obvious that the aides had their focus-child to work on. Some kids seemed more independent.

3. Isaac was seated next to a child described as the "most popular" in the class. In the short time I was there, most kids did not interact, but the class seemed calm and controlled for the most part.

There was only 30 minutes, and I spent a good amount of that time chasing O around. But there was one immediate question that came to mind. Will Isaac be the most socially adept kid in the class? And do I really want that?

Now I need to prep for the meeting, and calm myself a bit. Busy busy busy.

Friday, September 10, 2010

Eastside Social Skills Play Group

Or, more specifically, the fantasy to start one.
We love OGA and will still go once a month at least, but I am thinking we need one on the East side. I am going to start pecking around and look to see if we can start one.

At OGA, the kids have a blast in a safe and fun environment, but it is more of an opportunity for parents to get together and share. Which is so important. Yet the kids interact less then I would like.

So the focus of the playgroup would be to get the parents and kids together to play, but REALLY play. Tumbling and running, but also put on puppet shows together, work on our board game skills with other kids, even learn the rules of a few playground games. Isaac was petrified when he first encountered the Kindergarten playground all alone. After a week or so, of pretty much wandering around on his own, one of the aides gave him a job - rope turner for a jump rope game. Boom. Loved recess. Then he learned "red light green light", then "what time is it Mrs. Shark".

Now to put it together. Hmm.

Wednesday, September 8, 2010

Getting the Girl Ready

Now moving on to Ms. O.

I am looking at this girl, and wondering if there is anyway in hell she could be ready for Kindergarten in one year. She is still having accidents, still refuses to sit still for more than 2 minutes, still has issues holding a pencil/crayon, still won't eat, still prefers the company of adults over kids. Still still still.

The social pieces are starting to fall into place, which I note with relief. She is starting to play with other kids, not be intimidated by large and loud groups of her peers. Her communication is getting better each day.

Some of this can be achieved at home, some at school. Need to talk to EI and the Sunnyside Preschool gang about this.

First Day of Second Grade

Ok. It was a bit anti-climactic. He will be at Pioneer for another week, getting back into the rhythm and allowing his new class to get up and running, beyond the hectic first days. So we schlepped all the way into deep SE (ok, exaggeration), and deposited our newly minted 2nd grader back at his old school.

It is hard to be impatient with everything when he is so happy and proud of himself. On his daily goal sheet, "super job", smiley faces, and stars.

Isaac's IEP, which at time reads like a rap sheet, was sent over this week. I pre-empted that by sending over an Introduction to Isaac, a one sheet commentary on Isaac as a person, not as a special needs kid with a history. I talked about his likes and dislikes, his natural sense of rhythm and pitch, his passion for Yu-Gi-Oh and Harry Potter, and his love of all things pink. This might have been the only thing I got out of the MPAC meeting I went to 4 years ago (and never returned to).

He has been tired the last few days, but otherwise we are back into patterns of the school year. Isaac won't start Alameda until later this month, although we are imposing on the new teacher this Friday to meet face to face and tour the school.

Oh yes, about my last rant. I sent an email out and within a day was getting responses. Most of them reassuring, but also honest. He does have classroom experience, and years and years of working with ASD kids. They think he will be a good fit with Isaac.

Waiting and seeing.

Thursday, September 2, 2010

Squeaky Wheel

If there is one bit of advice I would give my 2007-self, back at that first IFSP meeting for Isaac, it would be to be as loud to about my concerns as possible.

Back then, I was overwhelmed by the experience and diagnosis, and really relied heavily on the wisdom and experience of the MESD staff (as well as our medical and therapy staff), to guide us through the minefield. David and I took the stance of "Isaac's Team", and included everyone on our squad.

2010-mom would yell at 2007-mom. That little voice in the back of your mind saying something is not quite right, listen to it! Don't just rely on the advice of the specialist and teachers to hope that things go right. Trust yourself!


So here is the most recent update on the Isaac-front. I received a call from Isaac's new teacher, Mr. P. As I mentioned in a previous post, I had finally broke down and made various calls and emails to get a name, and Mr. P wanted to call to say that he had been informed of my quest. He was nice, very open, even enthusiastic. He told us that he was excited about the new year, that he had been at Columbia Regional before, as an Autism Specialist, who was recruited by MESD to teach at Alameda so that they could expand their Special Ed program. He was still getting used to the new school and system, and apologized for not getting in touch with us sooner.

I thanked him, told him that the Pioneer staff would be in touch with him on Tuesday (first day of school, but Isaac will not be at Alameda until some days later). And then sat there with the phone beside me, listening to the ringing of 100 warning bells going on in my head.

Oh shit.

This was, almost to the last detail, an exact copy of the recipe at Roseway Heights. New teacher, from Columbia, ASD specialist, in at the last minute and a bit overwhelmed by the new position in the class. Enthusiastic, well-meaning, cares for the kids and wants their success. It took 6 weeks for that to go to Isaac being in an expulsion hearing and being removed from the school.

So began the argument in my head.

Difference this time? I actually hopped on the computer and emailed everyone on the team to share the battle. And the phone calls will be added once school opens on Tuesday.

Why was Isaac assigned to this teacher, rather than the other class that actually has a teacher with a hell of a lot more classroom experience? If there is a good reason, I am all about that.

Why was the Alameda staff not fully informed that Isaac was coming from Pioneer? How does that information change how the transition is handled?

If we feel as if the classroom is not the right fit for Isaac, what can we do. Can we change classrooms? What are out options?

Not gonna do it this time. Not gonna rely on optimism or good intentions. Squeak squeak squeak.

Not Quite Hitting the Ground Running...

More like stumbling and flailing. Not very gracefully, we are entering the fall term. Just days before the First Day of School, and I have not heard yet from Isaac's new teacher at Alameda, despite phone calls and emails, and O is still school-less.

And am I stressed? Have I fallen head-first into Parental Panic? Hell no. I am eating a grilled cheese sandwich and getting ready to take the kids swimming. Why?

Because I have done what I can for now. If necessary, I will head over to Alameda tomorrow, kids in tow, and tour the school, show up in still student-less classes and try to find out who claims the boy. I will smile, shake hands, make introductions. If PPS really wants to be a brick wall about this, pushing and pushing will only wear me out. So dammit, I am going to enjoy these last few days, and stock up on wine from Trader Joe's in preparation.

3 hours later...

So maybe I am not being that lazy. That is the problem with panic - it attacks. So on the way to swimming, I had an attack. Made a rash of phone calls, and now am in possession of Isaac's info for Alameda. And made an appointment to visit a school for Olivia next week.

Advice to all of the other parents out there? Be a pain in the ass. Be the squeaky wheel. I tried for two years to be the "good parent", and look where it got me? Pioneer. So now I am a massive pain in the ass when I want, and it has been far more effective. It sucks, but what option do I have?

So Isaac's new teacher is Mr. Kroswek. Love that he has male teacher - I hope he is as tough and structured as the tiny little girls teaching Isaac's class at Pioneer. Those chicks could wrestle a bear, even the one 8 months pregnant. I made sure that he was in touch with the Pioneer transition team (he is), and has a copy of Isaac's IEP (will review it first with Pioneer team). The great part of the Pioneer experience is there is no illusion. Trouble got him in, good behavior got him out (OMG, sounds like a prison).

And Olivia is going to visit Peninsula School in North Portland, described by Ms. Holly as a program very similar to the one at Edwards. Will provide update after. Teacher is Emily Cox. What I note from her description of their day, she really encourages independence, which we sorely need.

Whew. Feeling better. Gonna open a beer.

Friday, August 27, 2010

WHOOPS! Time Change for OGA Social Group!

Sorry folks. Need to read my emails more carefully.
THIS SUNDAY's OGA Social Group is from 10AM-12PM,
NOT from 9AM-11AM. The new earlier time will not start until September.
Sorry, folks.

Thursday, August 26, 2010

OGA this Weekend!

Oh, and a reminder to all interested parties - the OGA Sensory Playgroup meets this Sunday at a new time of 9AM to 11AM. Yes, it is way out in no-mans land, and a tad early. But it is so worth it. Follow OGA link to right of page for more information...


So our little impromptu Sensory Preschool, so idealistically put together after the sudden death knoll of Edwards, is caput for now (and for very good reasons, logistics being the least of it). So my slacker approach to finding Olivia a new program (an approach made up of me sitting on my butt the whole month of August and being optimistic), hasn't really worked out that much. My second approach is luckily very similar; sitting on my butt for the whole month of August and then scrambling something together in the first few weeks of September. Go team!

My lame excuse of there not being time to visit other EI programs between the announcement of Edwards and the end of the term still holds though. I will visit them after the start of fall term, once the panic attack of Isaac and Alameda subsides a bit.

And the panic will likely be minor (again, did I mention that much of my approaches revert to optimism and occasional bouts of denial?). Isaac is a Pioneer graduate, but the Pioneer team will be in control of the transition to Alameda for the first few weeks.

The first few days, he will be at Pioneer. Then, over the next few weeks, they will work him into his new class, attending part-time at Alameda with one of his aides and making sure that any issues that come up are managed before the Pioneer staff release him to Alameda.

Can you imagine? If our beloved Ms. Holly, Ms. Amanda, or Mr. Brian were able to attend the first week of classes for out little ones who are all in flux right now. Can you imagine what the success rate would be for all of the Ruby's, Tessa's, Ellie's and Olivia's out there?

Thursday, August 19, 2010

Free Zoo Event for Special Kids

Free VIP Safari Evening!

The Oregon Zoo is inviting children with disabilities and chronic and terminal illnesses, plus their immediate families, to a free evening as a Zoo VIP on Wednesday, Sept. 8th 2010 from 4pm to 8pm.

As a part of this special event, participants will receive:

Free admission to the zoo and free train ride.
Animal contact with a variety of zoo animals at the Family Farm.
Special performances of the popular WildLife Live animal show on the main stage.

To RSVP to this event, please give your first and last name and the number of family members to the Swindell's center (503-215-2429) or RSVP's will not be taken after Sept. 2nd. Please contact us early!

(we did this two year ago, it was actually quite fun)

And Now for More of the Same...

Summer is already almost over, and now we are already gearing up for the fall and Isaac's transition.

This should be interesting, and worth noting here in this blog for anyone who is interested. It will be a tale of failure and recovery, hopefully. But we are not there just yet.

Right now we are finally having a normal summer vacation from school, as short as that might be. Swimming lessons, afternoons at the park, trips to Grandmas. In this short month off of school, we get to be as normal as anyone else.

Well, almost. There is some anxiety, and not a little regret. But to ease the next few weeks, I have written down a list of goals for Isaac's move back into a typical school, and a list of goals for us at home (Poor O, I will get to her in September - in the meantime we are playing CandyLand 4 times a day and making cookies). First on our list goals at home: make a solid base of friends for Isaac. He has moved around too much. It is time to set roots down again in our neighborhood.

The list for school is lengthy and I will put down a few points:

What are MESD's expectations for Isaac in the next year?
What are my expectations of the class and teacher?
What is the teaching style? How does that match his learning style?
How do we teach and encourage Self Advocacy?
How can we use his strengths? How can we smooth over his weaknesses?


Where's the nearest bar?

Saturday, August 14, 2010

You Have Autism

Back from out little away time FROM the kids, oh I love them but it is so nice to sleep and eat and watch a movie again, minus the being-a-mom part. I slept 8 hours. IN A ROW.

I have been wanting to talk about The Talk for awhile, but have been so distracted by school-dramas. So I am putting a blip out there to see what comes back.

I had thought that the biggest talk I would need to have with the kids before releasing them into the world would be about sex. Discovering our sexual selves is such a paradigm shift in our lives, right? Colors the world with a different palate, especially how we see ourselves.

But how do you tell a child that, according to the rest of society, they are NOT NORMAL? There is no health issue or physical disability that shouts it out, and using Isaac as my context, he looks just like everyone else. We do not hesitate to discuss his ASD around him, but have not really sat him down and said, "You have Autism".

To him, THIS is normal. Finding out that this isn't, how will that change how he sees himself?

Thursday, August 5, 2010

Finding Miss O a New School, Part II

So I have come to a bit of a decision. Enough to get us started, anyway.

I made a list of all of the things, knowing what I know now, I would have done differently with Isaac, school-wise. To this list, I added my school goals (read - "dreams") for O.

MESD and PPS have a policy of putting kids in the "least restrictive environment" possible. But that didn't work for Isaac. It should have been the other way around. He should have had time to adjust to a restricted (but academically typical) Kindergarten, then slowly moved into a typical room.

So although O is a different kid with different needs, there is no way a "sink or swim" methodology is gonna cut it. PPS does not like this way. It is more expensive, I am sure, but also PPS gets a little ding on its record when a child has to be in a restricted environment. Does not work with their Inclusion Model. I will fight, bitch, moan, and manipulate to get this. I have learned all about that damned squeaky wheel, and am bitter that PPS has made me so freakin' noisy.

Back to this fall, and EI. We are not starting in September, unless by some miracle we find the perfect private program. In the fall, O and I will visit a few programs once week one has passed and calm has settled. I am not going to rush to make a mistake - O is just too sensitive. She even became overwhelmed at Edwards around Halloween 2009, and had to be pulled for two months while we worked with private therapists. If none work, that's OK. We will also be visiting private programs and go on waiting lists. Unlike so many other parents, I have one resource I can use - time.

So please, please let me know how your kids are doing in the fall. What do you think of Grout after two weeks, one month? How is Childswork going? Sharing so others can learn is the idea here.

Kids are leaving for grandparents in two days. Then 6 days with hubby doing nothing more than road trips to Eastern Oregon and the Wine Country. Will load up on Pinot. Might go to a movie that is not in 3-D.

Tuesday, August 3, 2010

And Now Back to Child #1...

Transition Meeting #3 with Isaac's teacher at Pioneer. Should be the second to the last prep meeting before the Big One with his new teacher at the end of August. Am I ready? Of course not. I was going to do that today while O was at school, but was wrapped up in more Edwards-talk with parents and teachers. Then there was a promised few hours this evening, but I was happily distracted by husband's suggestion of sitting in the Beer Garden at Amnesia on Mississippi (my mom is in town, yeah grandma!).

In all of this chaos, must remember to sit in a beer garden surrounded by hipsters and Irvingtonians slumming it more often!

That's all for tonight. Back tomorrow.

Monday, August 2, 2010

Land of the Lost

It is not just the words of concern, or the expressions of confusion and anxiety. It is also the body language. Shifting back in forth, listlessly meandering around the hallway, not knowing what exactly to do or to say. Parental Zombies.

The latest refugees from the PPS Cost-cutting Pograms.

For some it just SUCKS in a big way, as they scramble to find another preschool for the fall term, mere weeks away. And for those who know, most decent schools have been full since sometime in Feb/Mar. And then there are those of us (and I do mean "us") who are trying to avert an all out crisis. Sticking our little ones in an overcrowded EI class somewhere else just really isn't much of an option.

But I have complained about that enough already here.

Need to get practical. Where to send little Miss O.

One option under serious consideration is a private preschool, with supplemental visits by a "community-based" educator, a specialist who comes in and provides speech and OT, a few hours a week. There is, of course, EI at another school, but I have already gone over why that isn't going to happen (I know, famous last words). And then there is Home School, with the same community based educator as the private option. Not so great of an option when one of our focuses is socialization.

So, breaking it down. My short term goal for Little Miss O (LMO) is to increase her socialization with her peers, as well as adapt her independent ways to fit the structure of the classroom. Academics are in there too, but I can work on that from home. I can't provide the other goals for her by home schooling.

So, home school off the table. Now the other two.

EI in a public school would help her with the structure piece, but due to size, over-crowding, and an MESD system in flux as they attempt to implement the Inclusion Model, it may be so over-whelming as to shut LMO down socially (this has happened before, so this is more than speculation). But, on the other side of the coin, maybe I am underselling her, maybe she just needs a little push to break through that boundary and succeed. Am I being over-protective? Helicoptering in a little too close? Isn't my long term goal to move her towards a typical school experience?

Hmmm. Private Preschool it is, if I can get her into one. Or, maybe...

Many of her classmates are attending both. A few days here, a few days there. Is that too much transition (she seems ok with shifting gears most of the time)? Test both models, see which one she flourishes in.

All parents are afflicted with the same thing - Parental Guilt (goes along with being a Parental Zombie sometimes). Oh, the guilt. My daughter is in the living room now watching Wow Wow Wubbzy, I am probably killing off her brain cells at this very moment (and she is eating chips - hey, they ARE organic). I am sure there is a circle of hell set aside for parents like me. I am second guessing every move I make, hoping to God she doesn't end up on Oprah talking about how I ruined her by putting her in the wrong academic program (wait, Oprah is retiring, right?). How if I had just put her into THIS school, or got her a few more hours of THIS therapy, she would not be a drug-snorting former boy-band groupie with a serious stimming habit.


So, if you have seen any of my other posts, you might now Isaac academic history has him labeled in our home "Hurricane Isaac". That soon-to-be second grader is packing some serious baggage. Dude has a PPS rap sheet! I have asked him what he remembers from Sabin, from Roseway Heights (he doesn't recall Jason Lee Elementary at all). He remembers his friends from Sabin, especially Jackie. At Roseway, he wondered why he couldn't go back, that he didn't really like Chase and Kevin, but otherwise, he doesn't recall any of that unpleasantness.

If you ask Isaac about school, what kind of student he is, none of that matters. My little Buddhist is living in the here and now. He knows he likes school, has friends there, likes his teachers, has fun with his social skills aide, is really good at math, and always gets 100% on his behavior/IEP goals sheet. He is confident about Second Grade, and is excited about going to a new school in the fall (but more excited about having August off).

Basically, he has moved on. And if EI (dear god, NOT at Roseway), even part time, does not work with LMO, then we will cut our losses and move on. Because, at this age, my kids do move on, and maybe testing those waters just a bit at this age isn't a completely bad idea.

Yeah. I know. More Famous Last Words. I am full of them of this week.

Friday, July 30, 2010

Finding Miss O a New School

Because our EI options through MESD are crap.

I know there is no way to save the EI program at Edwards, but will continue to send out bitchy emails to anyone I an think of. So now the practical move towards finding Princess Pea a new "home".

My options break down to this:
Find a copy of the Edwards program so we can slowly draw her out.
Throw her into a more structured program that mimics kindergarten.

Isaac did well in the latter. His EI experience at Jason Lee (and if you don't know where that is, neither did I before we attended there), was very good. He liked the structure, started to speak much more clearly and more often, and made friends with a lot of the typical kids there as peers. One of them ended up being in his K class at Sabin, and it was her move to NY half way through their kindergarten year that triggered Isaac's anxiety attack.

So I am trying to be clear on what I have for goals for Olivia, and which program will be best to reach those goals.

The greatest heart ache of Autism, for the parents, is that for the most part we all have the same little goal, and yet that little goal seems so unattainable.

We want our kids to be happy. To make friends. To get as much out of the world around them as typical kids do. We don't worry about getting into the TAG program, or our kid making the baseball team. We just want them to be, well, kids. With all of the good and bad that comes with growing up.

Instead of being locked up in their own heads, restricted by their own bodies that sometimes just won't do what they want them to do.

Isaac is already so close. He makes friends, does well in school, likes to play sports, plans his future (he wants to work at McDonalds, but I tell him he has to go to college first), and tries very hard to control his anxiety. It is hard work, but he is on his way.

Now, little Miss O, what about you?

Thursday, July 29, 2010

This is Unacceptable: PPS Fails Us Again!

This will have to be short and to the point, since I am far too angry to think clearly and am posting this from the parking lot of the Hollywood Library.

The Early Intervention program at Edwards is closing. The kids are being moved out into other programs, the teachers are finding places to move on.

These kids are already at a disadvantage. They have a disability, or are socially vulnerable. Or in the case of my daughter - both. Now, they are being shoved around in an already over-crowded system, with little or no warning. Oh, no, we were told with one week to go. Thanks, PPS.

Now I have to think about what to do. Write to PPS, of course. But I am pissed, and that isn't going to be enough. The Oregonian? The local news channels? We as parents need to write in individually, but we also need to present a united front.

The nearest EI program for us, by the way, would be Roseway Heights. And that is NOT going to happen. I know this program, and loved the staff. Isaac did his EI with this team. But it is crowded, they get fewer services, and this little band of pre-K kids are shoved into a giant school full of K-8 graders. And for a child with ASD, social anxiety, and a fear of chaos, my daughter would fail miserably. Olivia will go to a private program.

And I know personally what happens when PPS fails these kids. They end up at Pioneer. Last resort. Kids being brought to class in security vehicles to prevent them from harming the driver. Kids hurling curses in the hallways sounding as if they suffer from Tourettes. And expensive per child due to the staff ratios and need for special services to help these failed children.

The fear goes one step deeper. What are they planning for Isaac's program in the fall?

Tuesday, July 27, 2010

Me and the IEP Part II

And welcome to another whiplash-inducing posting on my blog. Get used to wearing a neck brace, because over the two months I will be ALL OVER THE PLACE.

Do you ever feel as if your child's ASD is just an amped up piece from your own page of dysfunctions? My poor kids. They never really had a chance at typical, since my husband and I are skirting the spectrum at times ourselves.

I have spent the last few weeks hiding in the Parent's Lounge at Edwards School, where O gets her Early Intervention. Love the place, love the staff, BTW. I hide out of sight, armed with the tools that I will need for Isaac's transition meeting: copies of his most recent IEP, a notebook, and a copy of The Way I See It by Temple Grandin (yes I know I said I wasn't doing ASD books this summer and yes, I do know I told Temple to "Suck it" in a previous blog. I did warn you about the whiplash thing).

Awesome book, by the way, and my personal savior right now. Sorry, JC.

She has a section on teaching and education that has helped direct all of this IEP/Transition mess for me. In particular, her section on Problem Solving Skills. She goes on about how a child with an ASD has to be taught how to approach a problem, decipher what the goal is, break down the pieces, and figure out what is important to reach that goal.

Apparently, I needed to be "taught" (or at least reminded of) this too. Now the piles of books, papers, studies, and plans that are the result of Isaac's two years of PPS education are a little less frightening. Even without the vino. I am making my outline, indented and double-spaced, with a thesis, introduction and conclusion (knew all of those years in college would come in handy again someday).

Yes. I know. I am a dork. But I feel a much BETTER dork right now. As if, in all of this, I suddenly-and-just-for-a-moment, got control of life again.

Monday, July 26, 2010

Me and the IEP

There are the IFSP's. We had two years of those. Then came the IEP's. Two more years. Then the amendments. The Functional Behavior Plans. The transitional plans. Four schools worth, four teachers, two ASD specialists, and one Expulsion Hearing proceedings.


I have all of this spread on the kitchen island. I already feel beyond confused, frustrated, and am contemplating the bottle of Merlot on the counter. Piece by piece I pull the papers out, look them over, try to interpret all of the information from all of the professionals. Add to the pile pieces from the neurologist, speech therapist, and OHSU.

Isaac is transitioning. He is leaving his "behavioral boot camp" (my pet name for his Pioneer class), and leaving to test his new skills out on a SLP class at Alameda. And, with fingers crossed, moving into the mainstream.

This will not be our first attempt at an SLP class, nor creeping into the mainstream. Isaac started out in a typical Kindergarten class at Sabin, with a para-aide assigned to him for the first 8 weeks (she ended up staying with him for 10 weeks). We survived another 2.5 months without our safety net before it all came crashing down. His anxiety finally got the best of him, and Sabin had no resources to handle this. His kindergarten teacher (retiring at the end of that year) simply said she could do no more for him. And despite the fact that at this point I detested the woman (aren't K teachers supposed to be nurturing?) I had to agree with her. More damage was being done, so during spring break I moved him to Roseway Heights, to an a SLP class.

I had no idea SLP classes even existed. How ignorant was I? I always assumed that all options would be explained to me, that PPS and I were on a team working towards the same goal. It is most likely true in some situations, but not in this one. There was a slow leak on a need to know basis, and I was too naive to look up this information independently and ask the right questions.

Roseway was suggested because it was a small class with a stellar teacher. This was true. Ms. Margot was beyond fantastic. She was smart, organized, fully trained, and believed in each of her students' potential. And Isaac thrived. And then she left. Her husband's job took them east. Her replacement? That is another tale.

So here I am. We have been up and down, had great and then frankly crap teachers. He has been a tolerable, then an intolerable, and now a model student. For the first year and a half of his academic career, I dropped him at school with a feeling of dread. I never strayed too far away, knowing I would get a call to come help, or more often than not, come get Isaac. Since he arrived at Pioneer, nothing. I drop him off knowing he is going to have a good day. That he is going to learn, play with friends, have successes, and run out the door at the end of the day shouting "mom, I had a great day!".

Now we are getting ready for another transitional meeting, from Pioneer to Alameda, to an SLP class and then out into the world. It is a different ball game, to say the least. All of these papers, all of this experience, and naive no more, all of the information gathered from a dozen or more sources.

Feeling better equipped this time around. But still scared. A bit jaded. And, always, hopeful.