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.