Ahhh....the California life

Late April is lovely.

The wisteria is blooming and the bumblebees buzz ferociously overhead - dozens of them.  The oranges have been picked, and the new blossoms are smelling fragrant.

This is my view from the hanging chair....quietly enjoying a few minutes until the alarm goes off and I need to go pick up some kids.

Ahhhh!

Insurance paperwork day

This is what my "insurance paperwork day" looks like.  

Don't you wish YOU were participating in this fun?

You people living in countries with reasonable health care systems can just breathe a sigh of relief that YOU don't "get" to spend 3 hours doing this, pretty much ever.  This is just sorting the responses from insurance....then I get to log them on the spreadsheet and email the guy at XXX/Google.

A small handful of checks to deposit, though!!!

Hard to believe she's my kid

Ria went to the pediatrician yesterday....48.75 inches at age 5.5.  Instead of hovering around the 97th percentile line on the growth chart, she is now flying way above it.  This is, mind you, 0.25 inches shorter than Iain was on his ***8th*** birthday.  They even measured her height a 2nd time, figuring they had it wrong.

She had a growth spurt in the last 2-3 weeks.  She grew at least one full inch...I know because I had just recently measured her against my body, and now she's at least an inch higher than she was last month.

Clearly she takes after William, not me!

*Phew* / Happy swinging girl!

Happy Swinging Girl!!

Oh, wow, here we are!

Ria's IEP is signed off, we're all set.

We even this week got a "504 plan" set up and signed off for Iain.  That's secret speak for "modifications to the classroom for a child's disability".  Might be a wheelchair ramp.  In our case its reducing homework when the practice isn't necessary (math), allowing work to be taken home (writing projects), ignoring misbehaviour in the classroom when it isn't really a big deal.

We also did Ria's tester day in a Kinder classroom in Iain's school to see how it would go.  Wow, was she distracted.  All I could think was how if she had a controlled little area, her own desk, she'd be able to focus on what the teacher said so much easier....she was just soooooo distracted by everything going on around her.  When we toured the "typical" school, I was a bit disturbed by the Kindergarten kids all sitting at their desks.....but that would be just Fabulous for Ria.  Just the ticket.  So we officially switched her registration to be in the normal neighborhood school.  She won't be in Iain's school in the fall.  She took it really well, actually.  She is very aware how she likes a calm and quiet place....and the neighborhood school will be much calmer.

IEP.  504.  School officially chosen.  Whew.  what a week.

;-)

There's always a tinge of fear and sorrow:  Will the world be gentle to her?  Will people recognize her exuberance, hidden behind the book in her hands?  Will they dance with her when she dances in joy?  But she's lovable...she's sweet and kind.  So I expect people will always be disposed to take the time to really hear what she has to say, and once they do that, she will always win them over.  She's a nifty kid.  Smart.  Funny.  Kind.  You just have to be willing to move more slowly, at her pace, and then you will hear her.

This is going to be the last big transition for her for many years.....by the time she transitions again (out of elementary school), we'll know much more how she'll turn out.  I know she'll be kicking ass....she's a stubborn little (big!) thing....I just sometimes wonder how we'll get there.

(William had me listen to lovely songs that made me cry tonight, so I'm a bit melancholy....)

Half a Brain

William and I have a joke from waaaaaaay back....that we share half a brain.

Mind you, this is of the 1.5 brains total for the marriage calculation, not the alternative of 0.5 brains total.

Tonight, while fixing the wooden towel rail that Ria broke, we were listening to some music.
Mona:  "This is the guy who starts with a 'G', right?"
William:  [not too terribly long pause], "No, it's his brother."

Hence, half a brain.

B.t.w., Garnet Rogers v.s. Stan Rogers, the song was "Three Fishers."

(Similar conversations occur with books... William says it's most often for "The Venus Equilateral" by George O. Smith, which gets described as "The book with the light blue cover with the thingy on it and both me and my dad like it."  Apparently I forget that one rather often.)

just some cute pictures!

Hi everyone!

I've been so wordy, so have some cute kid pictures!  1st, Iain slurping down a mango lassi, the worlds best drink, in his mind!  Soccer (aka football) is on the screen.

 And here's Ria, enjoying a good read!

see you!

Contemplations

We're in a phase of contemplations for Ria, again.  As usual.

Iain is at a fabulous "choice" school in our public school system...parent participation, developmentally focused, etc., etc.  We have been excited about the idea of Ria being at school with Iain for months, years!

So....since finishing the IEP excitement, we've been thinking about actual Kindergarten, and realizing that Iain's school might not be the ideal place for Ria.  There is just so much stuff going on in the classroom at Iain's school, and with Ria's tendency to lose focus in noisy/exciting environments, that might just not work for her.  So, we're considering whether the regular, normal, neighborhood school might be better for her.

I've been feeling pretty odd about this idea that it might be better for her at the regular school.  Tonight, William realized that my odd feelings are stemming from the fact that, if we figure that the neighborhood school would be better for Ria, it will be the first time that the right thing for my kids will be the thing that is EASIER FOR ME.

How very odd.  Good for the kids, AND easier for me.  Is that allowed?

We're not fully decided.  We're scheduling visits for Ria at both schools so we and the teachers can watch her in the 2 environments and compare and contrast.  However, we're thinking its more likely she'll be at the neighborhood school.

*Phew*!!! What a relief.

What a lovely day.....have a picture!  This is Ria's Valentines picture from her Social Thinking class....just too darn cute!

So, we had the initial IEP meeting on Wednesday.  This is the one where they decide if she's a difficult enough case to spend any time on, if she gets services, if she gets put in a special classroom, if she speaks well enough, everything, just everything.  We've been a bit spazzy this last few weeks, months.

It ended up GREAT!  Not the ideal I'd hoped for, but definitely, I think, the best we could have managed.  Ria qualified for an IEP (Individualized Education Plan) under the autism clause, and was determined to be able to benefit from being schooled in a "general education classroom".  I.e., no "special day class" (SDC), which is what we all think of as a special education classroom from our childhoods, and no "inclusion classroom" which is kind of higher performing SDC (not sure if California terms them "inclusion classrooms", but other states do).  We were worried a bit about that, since Ria's ability to focus declines precipitously when a room gets noisy/lively, even in her 11 child preschool.  Based on reading the reports, we felt like we would either not get an IEP at all, or they'd swing way the other way and want to stick her in an SDC.

Admittedly, we only got the IEP by the skin of our teeth.  Ria was too borderline to clearly match the federal definition of who MUST be given special education services, so even though we all agreed on her strengths and weaknesses, she couldn't be definitively given an IEP.  They didn't even come to the meeting with draft IEP goals, which says a lot.  The director of special education was at the meeting, and she basically had to make the call at the meeting based on what we were discussing.  Luckliy, through working with the IEP advocate, we had developed a better understanding of the very basic minimum meaning of having an IEP, which is having a child who needs to be tracked against goals that are different from what the general population need to be tracked against.  Notice the lack of the word "services" in that definition.  We pushed on the "how are we going to track her progress", and "how will we measure if she is not progressing and needs more assistance" type of questions, and apparently that really resonated with the director of special ed.  Initially she's going to be assigned to one of the autism inclusion specialist for our district, who will work with the teacher to set up techniques to work with Ria, and will be in the classroom 30 minutes a month to take metrics (to measure progress against goals) and fine tune classroom approaches.

You've come so far!  Have a picture!  This one was taken by Alastair and Bev when they bravely took 3 kids, on their own, to a place they'd never been before back in January.  This is Ria, Rowan, and Iain having fun with bubbles at the Children's Discovery Museum.

The next step is to talk to the teachers at Iain's school to decide how to best place her.  The district wants her at a typical school (Iain's school is a parent participation school that is project based...a FABULOUS school, but with a tendency towards more movement and chaos, since there's often 2 or 3 different groups working on different things in the room.) and advises against Iain's school....but then they advise EVERYONE who is slightly atypical to avoid that school, so I take their advice there with a grain of salt.  We're going to see if the calmest of our 3 classrooms, possibly with a reduced day length (Kindergarten is "full day" here), would be sufficient for her.  If the teachers at Iain's school feel strongly that Ria wouldn't do well there, then we will put her in the regular school for our neighborhood-- which is also a great school, just not Iain's school.

So, we're still waiting for the draft IEP to review and comment on, but once we've done that, and decided about the placement for next year, then we are DONE with this issue until school starts in the fall!  Whee!

I cannot describe how much more relaxed I feel now that this horrific part of the process has been done.  They've been convinced, not only that Ria needs help, but also that she is WAY too close to "typical" to be stuck in a special classroom.  They see how smart she is, and her huge potential (and as is typical for her, she's charmed the socks off them all!).

We'll let you know how the school decision goes ;-).

"The Baldness Returns", coming soon to a blog near you!

In the midst of our IEP preparations, William is preparing for something else too.....to go bald once again to support research towards childhood cancers.

See his blog HERE.

See what he looked like last year in my blog post HERE.

An Insurance Victory!

We just received a check from insurance for, among other things, Ria's individual speech therapy for 2/17/11 and 2/24/11, and her *dyad* speech therapy for 2/17/11 and 2/24/11.

VICTORY!!!

I sent these in in July.
They were denied. The dyad sessions were denied "because we don't cover group speech codes", and the individual was denied "because it occured on the same date as those other speech sessions".

My insurance saviour at Google sent them back in January saying "pay them".

Jan 24: the 2/24 dates are denied "because this person doesn't have insurance with XXXX, send it to your real carrier".

Jan 31: the 2/17 dates are denied "because they are duplicates and we already finalized this one"

Feb 2: The 2/24 dates are denied for the original reasons "we don't do dyads" and "this was on the same date as another speech code, so its not covered".

Feb 3: ALL 4 SESSIONS, both the 2/17 and 2/24 dates, are denied AGAIN, because the claims are duplicates.

[Right about here we get the letter from 1/24 saying Ria has no insurance with XXX, and we fax the amusement on to our insurance saviour at Google.]

Feb 4: ALL 4 SESSIONS, are now magically approved. paid in full. ;-)

Today, we got the check.

Heh. You take THAT [unnamed insurance company]!!!

Did you miss me? and IEPs.

So, it must be easy to tell when our life is crazy, as I don't post anything, eh?

I keep thinking, "surely at least one of these areas will come to some sort of neat conclusion soon, and I'll post about it then!", but then nothing comes to conclusion.  And my progress on pictures is, erm, non-progressing.

Have a picture!  this is from our spring 2011 visit to New Hampshire, while William was still mostly bald-ish.  Ria had a bad haircut.  She HATED being mistaken for a boy.

One of the areas of our current saga is starting to work with the local school district to determine what services they might provide for Ria next year when she enters Kindergarten.  "Services" = "special education services", which is now called an IEP, or Individualized Education Plan.  We started the process to get Ria evaluated to determine if she qualifies for an IEP late last year, and since then we've been getting reports from all our therapy providers to give to the school district to guide them, and the district has been doing a bunch of testing/evaluations of Ria on their own, to determine how her "challenges" (how do you like THAT euphemism!?  Get used to it.) might impact her ability to learn in a school setting.  Filter this all through the "California schools have no money since the state keeps stealing the school money" issue, and it's clear that there is a conflict between the needs of the kids, and the money available to meet those needs.

You've made it through another paragraph!  Have a picture!  This is from the same trip out east last spring, from our visit with Mormor and Grandpa Henry.

The testing process for Ria's IEP is done, now it's just a 3 week wait until the official meeting on 2/29.

It's been a bit of an emotional roller-coaster process. The 1st date of school testing, back in January, seemed to test 100% to Ria's strengths.  She performed fabulously on the tests, so much so that the school psychologist was using careful words to prepare me for Ria not qualifying for an IEP.  The 2nd date of testing the speech therapist pulled the test that she expected would be the most likely to make Ria "fail" (i.e., qualify for an IEP), and we thought she had failed it, but when the test was scored, she squeaked past, so no qualification based on speech skills (I guess 2 3/4 years of speech therapy has been helping!!).  Then there  were various parent questionnaires, and 2 observations of Ria at her school, one by someone from the Autism group and one by the school psychologist.  Both of the observations seemed to run "short", by mine and the teacher's thoughts. We were all really concerned that they'd not stayed long enough to see Ria have to do something she REALLY struggled at. So, at this point, I'm freaking out that they aren't seeing what we see, that they're going to blow us off, etc., etc., which was in conflict from the very supportive feeling I was getting when I met with them in person.  But then, luckily, someone had told me I should request to receive the reports/test results prior to the actual IEP meeting. I did that, and though I won't get some of them until a few days before the meeting, the school psychologist passed her draft on to me to review for factual errors. I reviewed it yesterday and was just thrilled....the things she noticed and noted down from the school observation were just spot on. She described Ria to a "T". Even though she only saw Ria performing less stressful/hard academic tasks, she still saw clearly how Ria responds. Basically, even though she left earlier than we had expected, she had seen all she needed to see ;-).

So, as of yesterday, my stress level and concerns have plummeted, and I feel relatively positive again about the IEP meeting coming up.

I'm still going to get what is called an advocate, someone who is specialized in special education law to be your personal expert. I've re-realized that I function best if I have maximum data, maximum information, maximum expertise...otherwise I collapse in a puddle of stressed out goo. Hopefully we'll never need to bring the advocate to an IEP meeting, I'd like to avoid the conflict approach.  However, I need someone to help me understand if my expectations are reasonable, where is the line between what the school is supposed to help with and what we do with medical insurance.  I just don't know the lay of the land in this area, and it's stressing me to death. So, we'll hire an expert, to help in the sanity area.

The reports we got from OUR providers to support the IEP process were great. The speech one was especially interesting. Since Ria had crossed over the 5 years old boundary, new tests were available for her. Based on her progress on the old testing we had been thinking we might be able to graduate her from individual speech therapy this year, but the new testing showed some fabulously interesting discrepancies in Ria's skills. Some tests she performed at the 83rd %ile, age equivalency of 9 yrs 11 months, others she was less then the 1st %ile. It's redirected her speech therapy into focusing on different skills. We'll be continuing with them for another few years ;-).

Oh, I could go on and on about the IEP stuff, but I'll stop there.

Here, have a picture!! This is from Julia, Will, Duncan & Toby's visit in July....a short escape from the earthquake insanity that is their home in Christchurch, NZ.

In addition to the many many many (many many) layers of the Ria saga, I've been trying to reclaim my body from the abyss it seems to have fallen into in the last few years of chaos.  There's, of course, the requisite 5 MORE pounds that have shown up since I turned 40 a few years ago.  In addition, however, my hips have returned to their post-childbirth chaos, and I have this vertebra that went AWOL during our visit to England over the summer, and which I can't seem to regain control of.

Have a picture for making it this far! This is from our visit to England last summer.  Grandmother, us, and Alastair, Bev, and Rowan spent most of a week in the Lake District.

I can sometimes put my own hip back in place with my old physio exercises, but it's not reliable enough that I can give up the chiropractor visits. The one vertebra in my back is being tricky too.  I've had to up my commitment to my physio exercises....I do them 6-7 days a week, 30-45 minutes a day. I've had to add in the core strengthening exercises.  That plus trying to actually do cardio/fat burning exercise.  The weight isn't coming off, but at least the joints are doing better ;-). It just takes so much TIME. I don't get to spend my evenings doing little projects on the couch (like blogging!), I spend them doing therapy. It's frustrating, but I guess that's what I get for ignoring my body for 2 years.

Insurance is making progress, very very slow progress, but that's whole other rant/story.

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.

Butts.

(yes, yes, i owe you all pictures....*sigh*)

Last night we had dinner with one of W's friends from Canada, and apparently at some point in time Ria walked behind him for a bit. When we got back home Ria grinned up at him and said....."I saw your butt, " with some apparent glee....

Nug names

I've been meaning to mention the latest spate of nug naming. (Nugs are anything snuggly ... blankets, pillows, stuffed animals.)

Ria's naming conventions have been evolving.

At first, it was the traditional: a duck called "Baby Ducky", a doll called "Dolly", etc.

Then came food names. The other doll got called "Tortilla", and there's a dog called "Banana."

Then came (just one) animal named after a book/song/whatever. That's the girl monkey named "Larry", after a monkey in a They Might Be Giants kids song.

Now, however, she has hit her stride. The old 2-humped polkadot camel has been recently named "Zoozakdoodle." And now we have a (blue) duck named...."Geckowamba". I understand the "wamba" part, as we had been on a Chumbawamba kick in the car for a while. Its the "Gecko" bit I just don't understand.

Iain's matching blue duck is named "Erfrrg". (I'm sure he'd have spelled it with no vowels at all if he'd thought of it.) His dolphin is no longer "Dolphinus", but now instead "Iga", as Dolphinus is his last name. "Penguinus" is now "Icu Penguinus", although the original Icu has been given to Ria and is now named Iculina, as Iain got a new penguin named Icu while we were in NZ. His stingray is "Ray Guy", and the small dolphin is.... "Dolphin Bag". I don't get the "Bag" part, but who am I to question. I'm pretty sure Ray Guy and Ducky are still married (last night there was some mention of Ray Guy being someone's dad ... I was informed that sperm was involved), however I think they got married after Proposition 8 passed, so the marriage isn't legal (they're both boys). Personally, I think they should get officially married next time we're in Toronto.

Underwater!

OOh!
I forgot to post about this!

Swim lessons were a MASSIVE success this summer
- 1st Ria put her head underwater and became addicted to "bobs" (such that I was no longer allowed to touch her during her swim lessons, as she was busy bobbing).
- Then, spurred on by his sister's success, IAIN PUT HIS HEAD UNDERWATER on day # 9 of swim lessons! and by the end (day #16) he was opening his eyes underwater, and finding things on the bottom of the pool, and floating!

WOAH! MAJOR!!

Spring 2010

Here's a few fun pictures from May and June.

1st, a cool picture of Ria that Iain took:


Iain and his "dolphin clock"....I think he made it in Kindergarten.

Iain with crazy hair for Crazy Hair Day, the last week of school:

Ria flying a kite.

Good news and bad news....

Oh, lately it all seems so good news/bad news....

The good news is the NZ family is fine, the bad news is the aftershocks are still going and are ridiculously large.

The good news is that Ria got an Occupational Therapy evaluation so quickly after I finished the paperwork, the bad news is that I now have another appointment each week, but the good news is that they think OT will help, so i get another appointment each week ;-)

The fabulous news is that at Ria's eye appt today she was actually able to see the 3D in the testing!! She didn't see the 3D 6 months ago. Opthomologist said that her 3D vision was meeting her goal for age 5, so we're a year ahead! The bifocal portion of her prescription is going to be reduced in strength for the next set of glasses.

More fabulous news....I get to have time in the house alone tomorrow! Other than one power-house-cleaning session one weekend, I haven't had time alone in the house since August 5th. WHEE!!!

...and, Iain is 7 tomorrow ;-)

That sounds like more good news than bad, doesn't it? Life must be good!

If just the aftershocks in NZ would cut it out, then we should be doing great.

April 2010 - Auckland NZ

Back to old pictures!!

In April, after leaving our fabulous cousins (and Aunt and Uncle and Grandpa) in Christchurch, we stopped for a week in Auckland, just the 4 of us. This was kind of an exciting trip for William and I, as it was the 1st time we've really done a "just us" vacation with the kids. What with our extended families being scattered far and wide, vacations are usually family visits (which are lovely in their own right), but it was nice to finally try out being just us on a trip.

Auckland ended up being colder than we anticipated, but we survived! The biggest thing we learned was that, with a 3.5 year old along, dinner had to happen back at our little apartment/hotel. Ria was just unable to eat dinner out after a day of running around. That and we needed to pick just one "sight" to visit, plus a park, and that was what we could manage in a day. By day #3 we'd figured that out, so the last 1/2 of the visit went very smoothly.

Here's Daddy drawing for Ria, while Iain just waits for his food:

Climbing a nifty tree that even Ria could climb on her own!

Fountains are fun, no matter how cold it is!

Funny hair!


Boy + box + grassy hill == FUN!

Penguins

Warm enought to build in the sand ;-)

Iain was playing tug-of-war while Ria enjoyed a sheep shearing show.

Ria in a Tuatara egg:

A composite of Ria and Iain on a lovely Tuatara!

Summer, a day late

WHAT?!

1st day of school today for Iain today (2nd grade). After a summer where the top temperature was 75 F (24 C), today it was 94 F (34.5).

I'm not complaining about the cool summer, it was LOVELY! Although it admittedly didn't feel very summerish....it just seemed rude to immediately heat up to a full roast on the 1st day that we couldn't stick them in the wading pool all day long.

It should be warm for another 2 days, then cool again.

Horses

I was just putting Ria to bed, and I asked her what she dreams about. We'd been reading "Wynkin, Blynkin and Nod."

Ria: I going down a mountain.
Mona: How are you going down the mountain?
[Some confusion as we work on how one answers a "how" question.]
Ria: I riding a horse.
Mona: You're riding a horse down a mountain?
Ria: I riding three white horse!

Then we sang a song about a little girl named Ria who dreams about riding down a mountain on three white horses. ;-)

A few months ago, one of her teachers asked all of the children in her class what they dreamed of, and Ria hadn't answered the question.....now we know ;-).

April 2010 - Visit to Canterbury NZ, and COUSINS!

In April we finally took our mini-brood to go visit our COUSINS! in NZ. Duncan and Toby (and their parents Julia and Will, of course, but Iain and Ria aren't too fussed about parents ;-) have been here many times as they pass through from/to Canada or England or some world tour or another, but we still hadn't visited them, so off we went!

Week 1 was cousins....week 2 was just us 4 in Auckland. Auckland will be another post

Here's a few pictures of the visit.

William with 4 kids:
4 kids making funny faces:

The inseparable boys....there's about 87 cute pictures of these guys together, I just picked 2 at random(ish):



Ria having a music break....what fabulous posture!

Auntie Julia and Ria snuggling! The boys mostly ignored Ria, so she focused on kitty Libby and on Julia as the highlights of her visit.


The whole gang. Will, Julia, Grandpa John, William, Mona, Toby, Iain, Ria, and Duncan.

And here is the world premier of the Harvie/Rucklidge boys band called "Spider Eyes". They are a cover/air band....doing "We Will Rock You" by Queen.

And here's a mini-clip with Spider Eyes and their back up girl dancer (Ria), doing "I'm Going to Lose Control" from the soundrack of "Over the Hedge". Note her signature move during the chorus ;-)

More words

This will be a potty/poo related post. If you don't want to read it, just stop!

I'll sneak in this wordy post just before putting in some pictures....that way people who don't want to read about my daughter's digestive tract might not even notice the wordy post just under the new pictures ;-)

Ugh.

Sometimes I just feel sorry for Ria. I know most of her trials and tribulations are temporary and will be done and over with before she starts Kindergarten (except the bifocals and possibly the orthotics), but the list of cr*p she has to deal with is just rather long....
-Bifocals for crossed eyes
-gross motor delay/ balance issues
-physical therapy for the gross motor delay
-expressive speech delay
-2 speech therapy sessions a week for that delay
-orthotics due to complications from the gross motor delay
-2 ear surguries so far
-ear plugs anytime water gets near her head, unless chlorinated, due to ear tubes
-tricky constipation
-people (including her parents, sometimes) underestimating her thinking skills because of her non-stellar speaking skills.
-recurring bouts of nasty eczema on her hands
-detergent sensitivities, resulting in eczema all over her body if we don't avoid SLS, etc.

The current poop related joy is as such:

The potty training has just stalled out. She kept getting poop smears (the GI doctor calls them "sharts" ;-) in her undies, never seeming to make the step to figuring out when to go poo. Then we had 5 perfect poo days (even taking herself to the toilet!) after a bout of antibiotic related diarrhea! We thought she'd finally figured it out after 5 months....then it all went to hell and she's been in pull-up diapers since late May.

So last week we went to a GI doctor to find a new approach to her constipation since the never-ending Miralax since 10 months old doesn't seem to cut it for potty training. She thinks that the issue is that we never did a "clean out" for her colon, and that our Miralax dosage is too low. The concept is that bad constipation left chunks of nasty dried out poo in her colon. The walls of the colon by those dessicated poo bits gets unhappy. You need to not just flush out the dried nasty poo bits, but also keep the poo grotesquely gushy for a long-ish period of time so that the colon walls can heal up....otherwise dried poo will re-accumulate at those unhappy wall sections of the colon. This would explain the "5 perfect poo days" after the diarrhea....the chunks went away, and for 5 days she was free flowing, and then they started to build back up.

The issue is that having chunks stuck on the colon wall gives your body mixed signals as to whether or not you need to poo....hence the never finishing the potty training.

So....
This weekend we are doing a magnesium citrate bowel clean out, and on Monday we start a new Miralax regimen at almost 2x the dose we've been using, and we'll be doing that for at least 4-6 weeks. We also had the "joy" of doing a blood draw for some tests, so we'll have some blood test results in a few weeks to rule out any nasty causes for the constipation.

With any luck, the cleared out and healed bowel, together with regular potty sits after finishing main meals will get her bowel all nicely trained and regular.

*sigh*. But she's still a happy cute bubbly little girl despite it all!

Quickie speech update: the dyad speech therapy session is working in spades! Her speech is growing in leaps and bounds. One strange result of the improvement is that, now that she is speaking more and markedly better, her speech problems are more obvious. Before you could have just imagined that she had chosen to not speak, but that she could if she wanted to. Now, as you hear her labored speech, you can truly see how much work she has to put in to make her words. I've been feeling funky about the decision coming up next year on whether to put her in Kindergarten on time (2011 fall), or put it off a year. Now that it is easier to hear her speech abilities I feel like I will be able to make an intelligent decision next year about her Kindergarten readiness. My goal, off hand, is that she have 4-6 months of *easy speaking* under her belt before starting Kindergarten. This means easy speaking in all situations, not just at home with us. It feels good to have a reasonably measurable metric by which I can make my decision.

So....that's our girl ;-)....our lovely, happy, snuggly, sweet little girl.

Updates

Hello World....

I've got two, count them, **2** vacations to post a few pictures from, but I'm on the wrong computer for that, so instead I will do a wordy little update on how the kids are doing. Pictures next time, I promise!!!

Iain has been doing wonderfully. It is almost unbelievable to me how much difference a year of OT and social skills group has done for him. Intensely social situations without structure are the big bad thing for kids with Aspergers, and he's been doing camp this week with 30 or 40 kids in his group, from 9am-4pm, and he has been having FUN! OK, 3 of the 5 days had a minor upset....but he recovered from each of them quickly with a small camp counselor intervention.

One year ago, he never could have survived this camp. I'd have had to pick him up early the 1st day and not bring him back. This year, he's not only made it through camp, he's ENJOYING IT!!! I am so impressed by how he has internalized his therapy and uses it on a daily basis. We are so lucky that his Aspergers is mild. He seems to just need to have concepts brought to him and practiced in therapy, and he can use them. We don't need to practice and train at home very much. He's kicking butt!

Ria: you keep hearing about Ria! We're still happy we did the 2nd ear surgery ;-). Since then we have upped her speech therapy to 2x per week, the 2nd session being a "dyad" where she and another little girl with similar issues are literally taught step by step how to play together with words. Ria's speech issues seem to be complicated with a strong anxiety about using words in a stressful situation. Any stress derails her words: hunger, thirst, more than one person interacting with her.... you get the idea. The speech therapists have seen that dyads seem to help kids with her sort of issues. In addition, we've restarted the physical therapy, and have started "gymnastics" classes to help her balance/coordination development. She just didn't seem to be able to finish up her gross motor development without a little extra help.

She's been doing the 2nd speech therapy for almost 2 months now, and we are starting to see an upsurge in her speech skills. She is TRYING so much harder to verbalize, and she has dramatically increased her level of "commentary". Even when she is obviously having a hard time figuring out what words to put together (lots of "ums" and "uhs"), she still pushes through and tries to get her thoughts out in words! The trip last week to NH seems to have been a key impetus...she really seemed to start talking more last week, and this week when we're back, her speech therapists and her preschool teachers have really noticed the upswing in speech! (Its been hand in hand with a backwards step in potty training, but we will happily accept that for speech gains!)

Life is good ;-)

HUGS to all!

The Baby says "WAAAAH!"

Hee hee:

So, when Ria was going to bed tonight, she was busy being a baby.....which means happily saying "Waaah! Waaah!" while snuggling into bed. Odd, but it makes her happy.

When I was putting Iain to bed, I went in to pull Ria's glasses off (she falls asleep reading her books, so this is standard practice). When I took them off, it woke her up a bit......she opened her eyes and sleepily said "Waaah! Waaah!"

heh.....just too darn cute!