Reading time....

3 out of 4 family members can't be wrong....I'd best get a book and join them, eh?

Whew! 1st days of school!

Hi!

We're back!  School is started, and all is WONDERFUL!

This week is photo time for Mona-free-time.  The increased amout of time for me alone is working out fabulously....I FEEL GREAT!!!  I have lots of energy to do stuff with the kids after school, and i get things done in the morning, and I'm even managing to get started on a bit of exercising and doing my physio exercises!

WOOT!

Some 1st day of school photos for you ;-).  3rd grade for Iain and Pre-K for Ria.

Things/therapy are going amazingly well.  I'll update you later.  Bedtime!

CAMP!

Iain is, for the first time, at an overnight camp!
It's the YMCA's "mini-camp", so he's only there for 2 nights so its not so long and scary, just EXCITING!

He's in the newly built "tree top cabins"....and here he is in his bunk!

here's a combo shot from the front walkways....Iain's cabin is the one on the far left.  Please ignore the unknown children on their way home!  There should be a big version if you click on the image.  There 5 or 6 cabins built on stilts and connected with walkways

and here's a shot from below

He'll be home Friday afternoon....WHEE!

A year late: September 2010: Marble Maze!

Ok, not QUITE a year late...
Iain got a massive battery powered marble maze kit for his 7th birthday last year.  And here it is!

And a video of it in action!

*sigh*

I'm finally tackling the pile of medical statements and reimbursements that sit on my desk screaming at me to be dealt with.  One small little pile for William.  Another small one for Iain.  Another small one for me.  And 4 big bulky stacks for Ria.  I stare at those 4 stacks and just want to cry, sometimes.  Why does such a sweet little (OK, big.  tall.  certainly not taking after her midget mom ;-) girl have to have 4 stacks?  The appointments are just endless.  Admittedly, the ridiculous schedule of appointments we've taken on since her diagnosis has really been paying back with a lot of progress for her, so we're doing the right thing.  I want to just give her a summer at the beach, one day.  Listless never ending days.  Boredom with a pile of books up a tree.  No appointments, just swim lessons and sand castles.

Someday.

A few pictures

Hi:  a few pics:

Iain and I making fused glass projects last week....next week we get them back!

Here's Iain on his last day of 2nd grade with Mrs. Ross:

Iain and Ria

Ria on Adventure day a few months ago:

Ria at her school last month, doing her favorite thing:

It's here!

Ah....summer has arrived....EEK! 92 degrees!

I have to put Ria to bed with her anti-hot-water-bottle, a.k.a. a huge ice pack wrapped in a towel and a pillowcase, in order for her to fall asleep in her hot room. She looks so cute desperately clutching her ice pack!

NZ family is home

Our NZ family have moved back home!

WOOT!

Welcome home, Julia et al.

WHERE IS MY SUMMER?!?!

I would just like to know where my summer is.

This is California, for Heaven's sake! Summer starts the 3rd week of May. It gets hot for a week in late April. We all turn off the heat expectantly. Then it goes cold again and most of us turn the heat back on for the 1st half of May. Then it goes hot.

But it's June. And it is NOT hot. The heat is still on and it cycles on every morning at 7 am. GRRR.

We have low to mid 60's (F). Eva in NH is having mid to upper 70's. Same for Mormor in RI. Morfar is upper 70's to 80's in Chicago. Us, we're stuck in April weather. RAIN even! We're not supposed to rain from mid April until October! It RAINED today!

Me.
Want.
Summer.

All is well. If busy. The "year of Ria" is just a few months from being over. You don't know about "the year of Ria", because it is a busy year with no time for anything but the Ria saga (she is well, just busy), certainly no time to update the blog. The year of Ria is over starting August 25. You'll get 2 years of update at that time. Then comes the "year of Mona". That involves napping, reading, massages, going to the gym, and digging out of a lot of piles of paper.

Wish us warmth.

"Your head is all bald."

That's what Ria said to William today, "Your head is all bald."
And it is!
For those not in the know, W just did a fundraiser for St. Baldricks, a charity that raises money for research into children's cancers.
His blog post on it is:
http://fairly-accurate.livejournal.com
And his St. Baldrick's participant page is:
http://www.stbaldricks.org/participants/mypage/participantid/416919

And here's my favorite: exploding bald head picture!

Autism Spectrum R Us

This picture is from Ria's EXTREME haircut in December.....we've had another extreme haircut this month (February), but I haven't a picture of it yet. The December one was cute as a button, but got into her eyes/food/books too much, so it had to go....

Yo.

I've been avoiding posting on the blog (and I was supposed to buffer this blog post with picture filled blog posts before and after, but I just didn't manage it) since we've been on a bit of a journey in the last 5 months in the "figuring Ria out" area of life. So, here's what's up.

We started the dyad speech therapy (2 girls, working on how to do social interactions) in March, or maybe May, last year. That helped a lot, but by the end of the summer we just knew that the ear thing had been a bit of a red herring. The ears WERE a real problem, but they had been masking something. Ria just kept seeming more and more different from the other kids at school.

So, in late August/September we started trying to get set up with an Occupational Therapist evaluation (to look into the continued balance/coordination issues), and a Developmental Pediatrician evaluation (to go over her whole history, do evaluations, and let us know what exactly is making Ria just not seem to develop similarly to the other kids). We got the OT eval quickly, and started in on OT appointments rather quickly, but we had a 3 month wait (early December) to get the Developmental Pediatrician appt.

In Dec, based on the inital questionaires, the Dev. Ped. said we needed to look into possible Autism Spectrum involvement into Ria's problems. We got an appt to do an assessment in early January, and our appt to go over the results was for Feb 10.

We had our Developmental Pediatrician appt to go over Ria's assessment results, and Ria IS on the Autism Spectrum. Her diagnosis is "PDD-NOS", which is "pervasive developmental disorder - not otherwise specified". It is the catch-all bucket for the Autism Spectrum. It is one of the "milder" diagnoses, along with Aspergers, but you can be more or less mild within the diagnosis. It has fewer symptoms than an Autism diagnosis, but the severity of the individual symptoms could be worse than for someone with an Autism diagnosis.....it's all quite squishy.

Our "choices" in her diagnosis was whether to define her problems as "Developmental coordination disorder", which can have social isolation impacts due to speech and gross motor problems, or whether to classify her as "PDD-NOS" which comes with speech and gross motor problems. In the end, the Dev. Ped. decided that Ria's social problems trumped her gross motor problems, so PDD-NOS was the more likely "owner" of her problem. There was more to it than that, of course, but that's how she got where we ended basically. In retrospect, it seems clear that this is who she is, but it was tough hearing it in words.

PDD-NOS is, obviously, different from Aspergers. Aspergers doesn't have any speech implications, except within the use of speech in a social situation which is more due to social understanding issues. PDD-NOS has a heavy speech component. Ria's testing showed much more imaginative play skills than Iain did, so in that area she is less impacted than Iain, but her speech skills make her social deficits (problems) more acute. She also "goes into her own world" in a way that Iain has never done. "Severity" kinda goes with "age diagnosed" in these things (in my mind). Iain was diagnosed in Kindergarten, age 5.5, Ria in preschool, age 4.25, so her situation is more severe than Iain's by that metric.

In the great scheme of things, it changes nothing we're doing with Ria. We already have all her needs implemented in therapy. 1 OT (occupational therapy) per week, plus 3 speech-type therapies per week (1 regular individual speech session, 1 "dyad" speech session with another little girl to work on HOW to talk socially and play with someone else, and 1 social skills class (like the one Iain has) to help build social understanding...the social skills class is technically a group speech session). Our ongoing quest for potty training (she is doing so much better, but still doesn't initiate trips to the toilet) is going to be met with some short term behavioural therapy to help us find new ways to motivate her, as people on the spectrum generally don't respond well to
"extrinsic motivators" (sticker charts, M&M's, etc.). That behavioural therapy won't be a "keeper" in our schedule, just a short term boost to help 1 problem area.

[update from the original email that this is hacked from....we are likely to go into something called "PRT", or "Pivotal Response Therapy", which is based on ABA (applied behavioural analysis), which is a key therapy for people with Autism. PRT is supposed to help with communication issues, which is our area. I'll tell you more later, once we have gotten some phone calls back.]

I think you all know, but just in case: We're putting off Kindergarten 1 year for Ria, and have her enrolled next year in a young-5's pre-K program that is 5 days/week. They have only 12 kids in the class, and 2 teachers. They are very interested in helping implement any recommendations from ria's therapists, so we should be very well set up for next year.

The addition of the OT in September is starting to have some real impacts. People are starting to comment to us how Ria is talking to them more. She chatters more, and has become a climbing fiend at the park. she can climb the climbing walls without us having to tell her where to put her
hands and feet, she can figure it out herself. She can also (FINALLY!) jump like a champ!

So...
This wasn't so much a shocker result (OK, I was a little shocked in December when she said we needed to test for Austism Spectrum disorders, i was expecting only DCD, developmental coordination disorder, but we've had 2 months since then, so we'd acclimated already), as a final answer as to why it was that fixing the ears didn't fix everything. It is a lovely pointer to say that we're already doing everything reasonable (there's a few other options, behavioural therapies we could consider implementing at home, but that isn't clearly called for at her milder end of the diagnosis) for her, which is what really matters. [Update: yeah, it's called for considering her particular symptoms.]

She is lovely and happy and wonderful as always. She runs screaming around the house with Iain and insists she's not ready for bedtime, just like every other kid. We're implementing this all in a nicely early time frame, so by the time she's in Kindergarten next year fall she should have a lot of strong compensating skills to keep things on a nice even keel, just how her brother is on a fabulously nice even keel nowadays.