Yo ;-)
So... up to this point in history, Ria has been unable to tolerate "talking head" TV shows. She's only been able to enjoy things with visual action, and where the immediate issue is dealt with in a short-ish period of time. For this reason,a show like Mythbusters, which is Iain's favorite show in the world (although Nova is a darn close second right now) has not been accessible to her. (1) Talking head show. OK, yeah, some funny things happen, with explosions and all, but it really requires that you maintain in your head the concepts that come from the talking heads on the TV screen. (2) Experiment 1 starts, then experiment 2 starts, then experiment 3 starts, then experiment 3 finishes, then experiment 4 starts, then experiment 4 finishes, then experiment 2 finishes, then experiment 1 finishes. Just too damn much suspense for her. She hasn't been able, thus far, to cope with the constant interruption in the flow of the experiments.
A month ago or so we went to California Academy of Arts, and we decided to risk it and do the planetarium show all 4 of us. Much to our surprise and joy, Ria LOVED the planetarium show!
So, when Cosmos restarted last week (the new show rocks!), William REALLY wanted to introduce it as a family night special show in hopes that we all could enjoy it together. We watched show #1 on Saturday, AND.....Ria was enthralled. She was thrilled! Her world was rocked. It was GREAT!
She spent that whole evening commenting about how her whole body was made of star stuff, bits from the big bang. Even her baby toe! Even all her insides, not just her skin!
Then the next evening, as I was putting Ria to bed, she commented to me about how she thinks that a bunch of stars just CRASHED into eachother, really hard, and that's what caused the big bang. (Please note, the show did not discuss any theories about what came before the big bang, they didn't discuss the "big crunch" concept at all.) She had been thinking about it for a whole day and had been contemplating the ideas that were presented and expanded upon those ideas with her own interpretation of how they might fit into an EVEN BIGGER picture.
That unreasonable little terror in the back of my head that worried whether or not Ria would make the next step in cognitive development, if something would go horribly wrong and interrupt her development and not let her make the leap that happens ages 8-10, is in the act of being silenced. The rest of my brain is laughing at the paranoid little dork part of my brain that kept this terror alive. She's zooming out to see the bigger picture even as we speak. Damn, she's awesome! We've conquered the "talking head" issue!
I think this weekend Iain wants to try Mythbusters with her, to see if she's conquered the issue of dealing with interrupted flow of experiments.
One more unreasonable demon slayed. Onward to glory we go!
21 March 2014
08 March 2014
poot.
Oh, poodlefarts.
Ria's zinc is still sucky-low. And so is her copper. Best guess as to the situation is that our gut healing and yeast killing of last year weren't complete enough, so she is still not absorbing minerals particularly well in her gut. This means that the milk and gluten tests are being delayed as we enter another phase of gut healing and yeast killing. (Testing/Challenging with a known-impaired gut is a waste of time. It will fail. Heal first, challenge later.) New plan is to test milk in late April. Gluten isn't going to be able to be challenged this school year with the new timing.
*sigh*
We just do what we gotta do. As much as I don't like the answer we got at the appointment today, I have to admit the doctor's plan makes sense, so off we go.
07 March 2014
RIP Snaily, and GFCF, and stuff
hi ;-)
1st, the obligatory blog photos:
Here's Iain, in our hotel at Boston's Logan airport, with the same cool Lego kit Rowan got. Note the snow on the airport through the window. Our Christmas trip to the east coast was fraught with diseases, viruses, fevers, vomiting, and "winter storms". Isn't he just darn cute?!
Here's me when we got home, in a picture specifically to be sent to my family braving the winter weather, bragging about our fabulous weather in California. By 24 hours later I was sick again.
Here's Ria unwrapping a chocolate dipped coconut macaroon. OK, you can't see her face, but she's still cute as a button ;-).
Sorry, no good pic of William, unless you want the one of him laying on a bed of nails at some Google team building event. Yeah, seriously, bed of nails. Heh ;-)
Snaily: Ria had a lovely nerite snail in her fish tank that she got for her birthday. However, we confirmed today that Snaily is dead. Ria is very sad. RIP Snaily. Please think gentle thoughts to Snaily's soul, floating around there in Snail Heaven.
I've been looking over the past year's posts. Mighty thin, I must say.
So, I'd mentioned we were "doing biomedical" with Ria, the GFCF (gluten and casein free) diet, "healing her gut", but not much more. The 1st 6 months of last year were pretty darn intense implementing the biomed work with her. Lots of blood draws, and tests of effluvia. The goal was to determine how Ria's biochemistry was off kilter, and fix it. This wasn't the "DAN protocol", as that is basically "do everything that has ever helped any autistic child and see what works", but more of a focused approach looking at blood levels of nutrients before considering supplmenting. Organizing and doing the supplements was enough work (especially since my approach to life required that I research every single supplement to be confident of safety and appropriateness before putting them in Ria), and adding in the GFCF diet just made everything quite overwhelming.
I could type for hours on how it went....but the summary result (not that the summary will be short -- but just imagine if I gave all the details, EEK!):
We did get Ria off Miralax, replacing it with Magnesium Citrate. We did the gut healing and now believe in "dysbiosis". As we got to the end of the month of yeast killing, Ria's torso changed shape. She'd always been barrel chested, and by the end of that month you could see her upper abdomen had sort of deflated. She'd quite obviously had inflammation in the small intestine, as the inflammation went away. When we phased out some of the anti-yeast things, her upper abdomen went barrel chested again, and we added in a 2nd "therapeutic level" probiotic", and she deflated again. Kind of freaky, but impressive.
We also had strong results from the "mitochondrial support" supplements, CoQ10 and L-carnitine. These, along with magnesium (which we're supplementing for constipation) and some other stuff are in the "ATP support" type supplements that are out there. Within days of adding CoQ10, Ria had visibly more energy and stamina. Removing some of the gut-healing stuff made her more dragging again, so we added the L-carnitine then. At the start of Kindergarten she was literally unable to walk to school, as it was too exhausting. By the end of Kindergarten we were walking to school every day.
Based on blood tests, Ria's iron, zinc, and vit D-3 were very low, so we supplemented that. Zinc, magnesium, and yeast overgrowth are all associated with sound sensitivity. At Ria's Kindergarten's Christmas ("holiday") concert, pre-biomed work, she was able to tolerate the noisiness for about 1/2 the concert. At the end of Kinder ceremony she couldn't even stand with all the other kids because the noise overwhelmed her, she was off by the side a bit. (No picture for you of that, that one upset me.) 1st grade Christmas concert she sang the whole way through and had a great time. Her sound sensitivities are still there, but are greatly greatly improved. We've had trouble getting her zinc blood levels to improve, but they are on an upward trend finally, which is why I guess the Christmas concert went so well.
GFCF -- oh my. William and I were NOT believers that Ria was one of the autistic kids (she's not even technically all the way to "autisitc", she's "PDD-NOS") that had their symptoms improved by the GFCF diet. We were doing it for the gut healing. The doctor said that for "sensory kids" like Ria (kids with obvious sensory sensitivities), we should do GFCF for 12 months before challenging her with gluten or casein. The idea is that an unhealthy gut can't digest difficult stuff like gluten and casein, but once the gut is healthy maybe it will digest them just fine. So, maybe someone will have problems with gluten and casein at one point in time, but with gut healing they will later be able to eat it again. So, after Ria's gut deflated and she had her newly shaped belly, we decided to challenge her with casein and gluten to make sure the GFCF diet was really necessary before we did it while travelling to England and Sweden over the summer. This was at 5 months in, not the 12 months the doctor suggested. Casein: for a few days it was fine, but by 6 days in of eating milk products her sensory symptoms started getting crazy. By 8 or 9 days on milk we were desperately removing it again, while freaking out that it really did affect her. (If you can make it 2 full weeks with it in your diet daily without adverse symptoms, then you are OK with it.) So, we tossed the milk back out. The gluten was wierder. No sensory symptoms, no toe walking and terror that she was going to knock everything off the shelves at Trader Joe's.,....gluten just trashed her executive functioning skills. She made REALLY BAD choices on gluten. William came up with a great phrase: "your chooserizer is broken." By day 7, gluten was back out. And, reluctantly, William and I became GFCF believers. (Notably, so did Ria. She's pretty rabid about not cheating on her diet.)
So.....why did I feel a need to update you all on all that now?
Well -- we've been GFCF for Ria for over 12 months now. It is officially time to challenge again. We're going to do it, and I'm frankly a little terrified. Either result will be fine, I just don't want to experience the process of testing it. Next week, however, we'll start up the milk (casein) test.
There's other stuff to talk about, but I'm overtired. Now that we're more stable and "done" with the changes of biomed (except the GFCF challenges, and continued work on zinc levels), we are finding that we need to return to our older approach of more intensive hands-on therapy. We'll be back at the speech therapists for the summer for some special programs, and the school district has added speech therapy into her mix of supports at school.
Anyways, this biomedical year has been intensive, and overwhelming, and totally worth it.
Tomorrow I find out how the latest zinc blood level tests have gone (I'm suspecting they are good), and then we plan summer camps, and then we start the casein challenge. Wish us luck!
1st, the obligatory blog photos:
Here's Iain, in our hotel at Boston's Logan airport, with the same cool Lego kit Rowan got. Note the snow on the airport through the window. Our Christmas trip to the east coast was fraught with diseases, viruses, fevers, vomiting, and "winter storms". Isn't he just darn cute?!
Here's me when we got home, in a picture specifically to be sent to my family braving the winter weather, bragging about our fabulous weather in California. By 24 hours later I was sick again.
Here's Ria unwrapping a chocolate dipped coconut macaroon. OK, you can't see her face, but she's still cute as a button ;-).
Sorry, no good pic of William, unless you want the one of him laying on a bed of nails at some Google team building event. Yeah, seriously, bed of nails. Heh ;-)
Snaily: Ria had a lovely nerite snail in her fish tank that she got for her birthday. However, we confirmed today that Snaily is dead. Ria is very sad. RIP Snaily. Please think gentle thoughts to Snaily's soul, floating around there in Snail Heaven.
I've been looking over the past year's posts. Mighty thin, I must say.
So, I'd mentioned we were "doing biomedical" with Ria, the GFCF (gluten and casein free) diet, "healing her gut", but not much more. The 1st 6 months of last year were pretty darn intense implementing the biomed work with her. Lots of blood draws, and tests of effluvia. The goal was to determine how Ria's biochemistry was off kilter, and fix it. This wasn't the "DAN protocol", as that is basically "do everything that has ever helped any autistic child and see what works", but more of a focused approach looking at blood levels of nutrients before considering supplmenting. Organizing and doing the supplements was enough work (especially since my approach to life required that I research every single supplement to be confident of safety and appropriateness before putting them in Ria), and adding in the GFCF diet just made everything quite overwhelming.
I could type for hours on how it went....but the summary result (not that the summary will be short -- but just imagine if I gave all the details, EEK!):
We did get Ria off Miralax, replacing it with Magnesium Citrate. We did the gut healing and now believe in "dysbiosis". As we got to the end of the month of yeast killing, Ria's torso changed shape. She'd always been barrel chested, and by the end of that month you could see her upper abdomen had sort of deflated. She'd quite obviously had inflammation in the small intestine, as the inflammation went away. When we phased out some of the anti-yeast things, her upper abdomen went barrel chested again, and we added in a 2nd "therapeutic level" probiotic", and she deflated again. Kind of freaky, but impressive.
We also had strong results from the "mitochondrial support" supplements, CoQ10 and L-carnitine. These, along with magnesium (which we're supplementing for constipation) and some other stuff are in the "ATP support" type supplements that are out there. Within days of adding CoQ10, Ria had visibly more energy and stamina. Removing some of the gut-healing stuff made her more dragging again, so we added the L-carnitine then. At the start of Kindergarten she was literally unable to walk to school, as it was too exhausting. By the end of Kindergarten we were walking to school every day.
Based on blood tests, Ria's iron, zinc, and vit D-3 were very low, so we supplemented that. Zinc, magnesium, and yeast overgrowth are all associated with sound sensitivity. At Ria's Kindergarten's Christmas ("holiday") concert, pre-biomed work, she was able to tolerate the noisiness for about 1/2 the concert. At the end of Kinder ceremony she couldn't even stand with all the other kids because the noise overwhelmed her, she was off by the side a bit. (No picture for you of that, that one upset me.) 1st grade Christmas concert she sang the whole way through and had a great time. Her sound sensitivities are still there, but are greatly greatly improved. We've had trouble getting her zinc blood levels to improve, but they are on an upward trend finally, which is why I guess the Christmas concert went so well.
GFCF -- oh my. William and I were NOT believers that Ria was one of the autistic kids (she's not even technically all the way to "autisitc", she's "PDD-NOS") that had their symptoms improved by the GFCF diet. We were doing it for the gut healing. The doctor said that for "sensory kids" like Ria (kids with obvious sensory sensitivities), we should do GFCF for 12 months before challenging her with gluten or casein. The idea is that an unhealthy gut can't digest difficult stuff like gluten and casein, but once the gut is healthy maybe it will digest them just fine. So, maybe someone will have problems with gluten and casein at one point in time, but with gut healing they will later be able to eat it again. So, after Ria's gut deflated and she had her newly shaped belly, we decided to challenge her with casein and gluten to make sure the GFCF diet was really necessary before we did it while travelling to England and Sweden over the summer. This was at 5 months in, not the 12 months the doctor suggested. Casein: for a few days it was fine, but by 6 days in of eating milk products her sensory symptoms started getting crazy. By 8 or 9 days on milk we were desperately removing it again, while freaking out that it really did affect her. (If you can make it 2 full weeks with it in your diet daily without adverse symptoms, then you are OK with it.) So, we tossed the milk back out. The gluten was wierder. No sensory symptoms, no toe walking and terror that she was going to knock everything off the shelves at Trader Joe's.,....gluten just trashed her executive functioning skills. She made REALLY BAD choices on gluten. William came up with a great phrase: "your chooserizer is broken." By day 7, gluten was back out. And, reluctantly, William and I became GFCF believers. (Notably, so did Ria. She's pretty rabid about not cheating on her diet.)
So.....why did I feel a need to update you all on all that now?
Well -- we've been GFCF for Ria for over 12 months now. It is officially time to challenge again. We're going to do it, and I'm frankly a little terrified. Either result will be fine, I just don't want to experience the process of testing it. Next week, however, we'll start up the milk (casein) test.
There's other stuff to talk about, but I'm overtired. Now that we're more stable and "done" with the changes of biomed (except the GFCF challenges, and continued work on zinc levels), we are finding that we need to return to our older approach of more intensive hands-on therapy. We'll be back at the speech therapists for the summer for some special programs, and the school district has added speech therapy into her mix of supports at school.
Anyways, this biomedical year has been intensive, and overwhelming, and totally worth it.
Tomorrow I find out how the latest zinc blood level tests have gone (I'm suspecting they are good), and then we plan summer camps, and then we start the casein challenge. Wish us luck!
21 February 2014
And now it is suddenly October 2013!
And now it is October 2013, and we have some fabulous fall pictures! Ria's is like last year's, looking very mature and a tiny bit goofy. Iain looks just darn handsome. That kid is cute.
Ria, Fall 2013, 1st grade
Iain, Fall 2013, 5th grade
I'm being called on to play a game of Get Nifty, so I'll have to post this without all the words I meant to type. But, both kids are just kicking butt this year.
Iain is in 5th grade. He is learning the clarinet (although unlikely to continue next year - he hates practicing), and has almost mastered Darth Vader's theme (the Imperial March). Here's a video of him doing a solo - 1st few seconds are missing, and the angle is terrible (our camera freaked out, so we used someone else's video), but he sounds GREAT!
no more time to chat, off i go
I'm being called on to play a game of Get Nifty, so I'll have to post this without all the words I meant to type. But, both kids are just kicking butt this year.
Iain is in 5th grade. He is learning the clarinet (although unlikely to continue next year - he hates practicing), and has almost mastered Darth Vader's theme (the Imperial March). Here's a video of him doing a solo - 1st few seconds are missing, and the angle is terrible (our camera freaked out, so we used someone else's video), but he sounds GREAT!
no more time to chat, off i go
Imagine it is spring 2013...
So, imagine it is spring 2013, and you look on my blog, and find pictures of the kids! California has this ridiculous thing with 2 school pictures in the year. The fall one is the traditional one, and the spring one is "relaxed pose", which I think is silly and I never buy. But Ria's was just so darn cute last spring that I bought it anyways, which meant I had to buy Iain's too. His spring poses are never as good as his regular pictures, but there you go.
Ria, Spring 2013, Kindergarten
Iain, Spring 2013, 4th grade (only school picture that shows the braces)
Ria's IEP last week was great. I requested that the district do additional testing since her progress on her IEP goals in the fall was beyond uninspiring. Backwards motion, in some cases, pretty upsetting. The area I suggested testing in didn't pan out (i.e., did not show academic need in that area), but they did additional testing beyond that area, and now she has speech services added in, with some fabulous new goals that are really right on target for her. Higher quality goals are important as they guide the interventions provided, and a better goal means more on-target training/therapy, which means more progress.
We even manged to get the expander in her mouth yesterday! I know.... WHAT?! Orthodontia in a 1st grader?! yep. Poor thing can barely talk today -- all lisp. Its a good thing, though. Best plan. Wasn't sure it would work out with the way the appt 2 weeks ago went, but we have a system now and can get through the appointments.
OK, sending this post out so I do the fall pictures next.
Ria, Spring 2013, Kindergarten
Ria's IEP last week was great. I requested that the district do additional testing since her progress on her IEP goals in the fall was beyond uninspiring. Backwards motion, in some cases, pretty upsetting. The area I suggested testing in didn't pan out (i.e., did not show academic need in that area), but they did additional testing beyond that area, and now she has speech services added in, with some fabulous new goals that are really right on target for her. Higher quality goals are important as they guide the interventions provided, and a better goal means more on-target training/therapy, which means more progress.
We even manged to get the expander in her mouth yesterday! I know.... WHAT?! Orthodontia in a 1st grader?! yep. Poor thing can barely talk today -- all lisp. Its a good thing, though. Best plan. Wasn't sure it would work out with the way the appt 2 weeks ago went, but we have a system now and can get through the appointments.
OK, sending this post out so I do the fall pictures next.
12 February 2014
long time no see!
Well -- I'm a bad blogger, eh? The grandparents have no school pictures, etc.
So, here's a picture of Iain and Ria at dinner out earlier this evening (William had a dinner meeting). Ria had just had her hair cut. Cheese plate for Iain, and a hamburger and fries (no bun) for Ria. Chicken tortilla soup for me (with Ria's leftover fries).
IEP tomorrow, attempting to get Ria to accept orthodontists to access her mouth on Thursday (last week's attempt failed), and no school next week (yay!).
22 August 2013
1st day of school, and last day of braces!
OK, they didn't happen at the same time.....
On Monday the kids had their 1st day of school: Iain in 5th grade, Ria in 1st. Have a good look at those braces on Iain, because today they came off! (Yes, he wore his shoes to school, just not for the picture.)
zoom in!
Now, no braces for Iain, and fabulous new glasses for Ria! (Admittedly, as Iain mentions, Ria's chanelling her inner nerd in this photo, but all members of our family ARE nerds, so that's OK. Every leaf on every tree is "crispy clear!") Everyone, BLINK!
Summer photos, soon!
On Monday the kids had their 1st day of school: Iain in 5th grade, Ria in 1st. Have a good look at those braces on Iain, because today they came off! (Yes, he wore his shoes to school, just not for the picture.)
zoom in!
Now, no braces for Iain, and fabulous new glasses for Ria! (Admittedly, as Iain mentions, Ria's chanelling her inner nerd in this photo, but all members of our family ARE nerds, so that's OK. Every leaf on every tree is "crispy clear!") Everyone, BLINK!
Summer photos, soon!
25 June 2013
Summer!!!
I'm baaaack!!
Another chaotic and fabulous school year is over. I will finally bless you with photos ;-)
Here's Iain with Ms. Prentice, his fabulous 4th grade teacher:
And Ria with her teacher (on the left) Mrs. Milos, and her aide Mrs. Gloria on Kindergarten graduation day:
And, being Ria, she has 2 more teachers, but I only caught one of the others with her, Ms. Lucy, her school OT (peeling oranges to improve hand strength and dexterity here):
The last month of school is always psychotically chaotic, but we somehow survived.
Ria informed her teacher that she would no longer be going to the same school -- she was going to go to one that is (a) quieter and (b) has less work. Her teacher agreed that that would be a lovely school (especially if it were in the tropics!), but that, unfortunately, all schools have noisy kids and work. Then Ria grudgingly agreed to come to the same school next year. Later, Ria threatened to essentially boycott her graduation ceremony, until she found out that she was going to 1st grade whether or not she participated in the party (she's concerned about the noise and work level of 1st grade), then she gave in and in the end had fun at the celebration. She's a funny kid, that one!
Iain persists in this odd feature of "getting more mature." I'm not quite sure what to do with it! He is taking ownership of the areas he needs to work on, and doesn't freak out when we point them out to him. Odd. I had a coworker way back when who said that ages 8-10 were his favorite, and I really can't fault him in that evaluation.
Ria is now taller than Iain by 1/2", and outmasses him by 10# (he's given up being annoyed by this, as it is clear that all people consider her to be freakishly tall...thus it really says nothing about his height). They also have completely different body shapes. He is slender, and she's built like a brick. This picture is terrible, with slouching and perspective making her look shorter, but you can really see how differently they are built in this one. At least, ***I*** can ;-).
We went to Santa Cruz boardwalk for William's birthday....here's Iain and I going up on the ferris wheel:
...and William and Tiger Girl as viewed from above:
OK, off to bed. I feel more honorable now, as at least there's a few pictures here for once!
21 May 2013
Ahhhh..... The end of one era
Yo!
(Bad Mom! No pictures!.... sorry...)
Today was quite a milestone. Today Ria graduated from individual speech therapy.
[Deep Breath]
All our excitement with her started 4 years ago when she was 2.5 years old, and Iain asked "When will she talk like the other kids?" Or some similar heart rending question. That, plus not being able to run without going in zigzags and falling down every 5th step or so, and we started our journey on the Discovery of Ria. Step 1 was the initial evaluation with the speech therapists....that was even before the 1st visit with the ENT and the ear surgery. Admittedly, the actual speech therapy sessions didn't start until after the 1st set of tubes/grommets and the start of PT, but the speech evaluation came first. When we started she pretty much only had nouns. She didn't understand verbs. She had no concept what was meant by the "W questions". Jen guided us in teaching her all of that.
Its been 4 years now. At this point her functional speech skills are working. Her remaining speech problems are in pragmatic speech.... How to have a conversation. How to negotiate to play a game. How to interact with others. These are all "social speech" skills, and she's getting social skills classes both at school and privately. So we've finished with that which came first.
I know that Ria will eventually just function in the world as a slightly odd duck (quack!), and noone will even realize what she went through to get there. It's just the bit where we have to get through the development process to get her there. Rather, SHE needs to get through the process....she does the hard work, after all. We only think that we're the ones who have it hard.
One of Ria's catch phrases is: "Life is hard....but good." Today she said to me that she wished she could say "Life is fun, and good." We commiserated about how everything has ups and downs.
It felt like there should have been more fanfare.... a brass band, fireworks, a national holiday. It passed quietly, however.
Another one down. A few more to go.
I'm going to miss Jen, though.
Sleep well, all!
(Bad Mom! No pictures!.... sorry...)
Today was quite a milestone. Today Ria graduated from individual speech therapy.
[Deep Breath]
All our excitement with her started 4 years ago when she was 2.5 years old, and Iain asked "When will she talk like the other kids?" Or some similar heart rending question. That, plus not being able to run without going in zigzags and falling down every 5th step or so, and we started our journey on the Discovery of Ria. Step 1 was the initial evaluation with the speech therapists....that was even before the 1st visit with the ENT and the ear surgery. Admittedly, the actual speech therapy sessions didn't start until after the 1st set of tubes/grommets and the start of PT, but the speech evaluation came first. When we started she pretty much only had nouns. She didn't understand verbs. She had no concept what was meant by the "W questions". Jen guided us in teaching her all of that.
Its been 4 years now. At this point her functional speech skills are working. Her remaining speech problems are in pragmatic speech.... How to have a conversation. How to negotiate to play a game. How to interact with others. These are all "social speech" skills, and she's getting social skills classes both at school and privately. So we've finished with that which came first.
I know that Ria will eventually just function in the world as a slightly odd duck (quack!), and noone will even realize what she went through to get there. It's just the bit where we have to get through the development process to get her there. Rather, SHE needs to get through the process....she does the hard work, after all. We only think that we're the ones who have it hard.
One of Ria's catch phrases is: "Life is hard....but good." Today she said to me that she wished she could say "Life is fun, and good." We commiserated about how everything has ups and downs.
It felt like there should have been more fanfare.... a brass band, fireworks, a national holiday. It passed quietly, however.
Another one down. A few more to go.
I'm going to miss Jen, though.
Sleep well, all!
24 April 2013
Our Trail
I was just walking home from dropping Ria at school (go me! I WALKED!). Normally if we self-propel to school, we bike with her on the trail-a-bike, so I zoom home and don't see much of the other human trail users, but walking you get to see them all.
It was great. There's the moms coming home from dropping kids off, the young families with infants in the stroller, the high tech guys with their spandex shorts and funny biking shirts, the guys from the auto shop in their blue overalls with a bike helmet strapped over their baseball caps, just 1 spandex and silly shirt clad woman, and (my favorite) the lady biking in her dress and high heels. My mom used to bike to work in her work dress, but I don't know that she wore high heels while biking....maybe she did.
What a great town!
It was great. There's the moms coming home from dropping kids off, the young families with infants in the stroller, the high tech guys with their spandex shorts and funny biking shirts, the guys from the auto shop in their blue overalls with a bike helmet strapped over their baseball caps, just 1 spandex and silly shirt clad woman, and (my favorite) the lady biking in her dress and high heels. My mom used to bike to work in her work dress, but I don't know that she wore high heels while biking....maybe she did.
What a great town!
29 March 2013
Balls flying around
Oops!
We had some excitement a few weeks ago that I forgot to update people on!....It turns out good, I promise ;-)
A few weeks ago Ria made this odd comment at bedtime..."Dad, why does it look like there are balls flying at me?"
Parent thought process:
(1) Hmm, odd visual artifact/experience.
(2) Ria has progressive myopia, very near sighted, I can tell her prescription is getting worse lately as she's moving closer to the TV.
(3) Very near sighted folks are at greater risk for retinal detachments.....which shows up as odd visual artifacts.
(4) EEEEEEEK!!!
(5) Let's make an ophthalmologist appointment tomorrow.....EEEEK!!!!
At the ophthalmologist office we find out that her eyes are healthy as can be. The thing that is changing is.....
SHE IS DEVELOPING 3D VISION!!!!!
Whee!!!
Background - Ria has been wearing bifocals since she turned 3 specifically because she tends towards going crosseyed (accomodative esotropia). Basically, the images from the 2 eyes are not perfectly overlapping, so she sees slightly double all the time, and when she really wants to focus well (while reading, usually), one eye will turn WAAAY in so that she will see only 1 set of words in front of her, making it easier to read. In her situation, the bifocals trick her eyes into getting a reasonable overlap of the images from her eyes so she doesn't feel a need to go crosseyed so much. The hope was, of course, that eventually her brain would figure out these overlapping (or near overlapping) images and fuse them into one 3D image. Very often what happens instead is that the brain just learns to ignore the input from one eye and pay attention only to the other so that it doesn't experience the double vision (this is what William does, one eye is his "near things" eye, one is his "far things" eye, and the 2 never work together).
There are two 3D tests. For both the kid puts on 3D glasses and looks at a hologram.
1st test: If you have no 3D you see a picture of wierd blobs. If you have weak 3D you see one image, if you have stronger 3D you see a different image.
2nd test: There is an array of 9 sets of dots that you have to decide which one is popping out at you. Sets 1-3 are "gimmes", since you can see which dot is different even without the glasses. Set 4 requires only very weak 3D vision....onwards up to set 9 that requires a strong 3D vision to discern which is popping out.
In previous visits, Ria could get to #4 on the 2nd test (very very weak 3D), and on the 1st test she could tell something was kind of coming out of the page, but couldn't ever name it -- the image wasn't strong enough to be able to label.
In this visit, first she stared at the picture for a while. She could tell something was there. The office tech (this part of the visit is without the actual ophthalmologist) encouraged her to just "stare harder", and then she could label the 1st level image. The office tech encouraged her more "stare right here, really hard", and she was able to label the 2nd level image! Then they went to the dots....it took a lot of hard concentration, but she got to.....*****7*****!!!!!
So...we're guessing this new 3D vision isn't constant, its kind of going in and out little bits all day long. And the "balls flying at my face" is some visual artifact caused by the 3D going in and out. This also explains why she suddenly started getting carsick for the 1st time this past summer.
We went from absolutely terrified about Ria's eyes to utterly thrilled in less than 24 hours.....what a rollercoaster life is, eh?
We had some excitement a few weeks ago that I forgot to update people on!....It turns out good, I promise ;-)
A few weeks ago Ria made this odd comment at bedtime..."Dad, why does it look like there are balls flying at me?"
Parent thought process:
(1) Hmm, odd visual artifact/experience.
(2) Ria has progressive myopia, very near sighted, I can tell her prescription is getting worse lately as she's moving closer to the TV.
(3) Very near sighted folks are at greater risk for retinal detachments.....which shows up as odd visual artifacts.
(4) EEEEEEEK!!!
(5) Let's make an ophthalmologist appointment tomorrow.....EEEEK!!!!
At the ophthalmologist office we find out that her eyes are healthy as can be. The thing that is changing is.....
SHE IS DEVELOPING 3D VISION!!!!!
Whee!!!
Background - Ria has been wearing bifocals since she turned 3 specifically because she tends towards going crosseyed (accomodative esotropia). Basically, the images from the 2 eyes are not perfectly overlapping, so she sees slightly double all the time, and when she really wants to focus well (while reading, usually), one eye will turn WAAAY in so that she will see only 1 set of words in front of her, making it easier to read. In her situation, the bifocals trick her eyes into getting a reasonable overlap of the images from her eyes so she doesn't feel a need to go crosseyed so much. The hope was, of course, that eventually her brain would figure out these overlapping (or near overlapping) images and fuse them into one 3D image. Very often what happens instead is that the brain just learns to ignore the input from one eye and pay attention only to the other so that it doesn't experience the double vision (this is what William does, one eye is his "near things" eye, one is his "far things" eye, and the 2 never work together).
There are two 3D tests. For both the kid puts on 3D glasses and looks at a hologram.
1st test: If you have no 3D you see a picture of wierd blobs. If you have weak 3D you see one image, if you have stronger 3D you see a different image.
2nd test: There is an array of 9 sets of dots that you have to decide which one is popping out at you. Sets 1-3 are "gimmes", since you can see which dot is different even without the glasses. Set 4 requires only very weak 3D vision....onwards up to set 9 that requires a strong 3D vision to discern which is popping out.
In previous visits, Ria could get to #4 on the 2nd test (very very weak 3D), and on the 1st test she could tell something was kind of coming out of the page, but couldn't ever name it -- the image wasn't strong enough to be able to label.
In this visit, first she stared at the picture for a while. She could tell something was there. The office tech (this part of the visit is without the actual ophthalmologist) encouraged her to just "stare harder", and then she could label the 1st level image. The office tech encouraged her more "stare right here, really hard", and she was able to label the 2nd level image! Then they went to the dots....it took a lot of hard concentration, but she got to.....*****7*****!!!!!
So...we're guessing this new 3D vision isn't constant, its kind of going in and out little bits all day long. And the "balls flying at my face" is some visual artifact caused by the 3D going in and out. This also explains why she suddenly started getting carsick for the 1st time this past summer.
We went from absolutely terrified about Ria's eyes to utterly thrilled in less than 24 hours.....what a rollercoaster life is, eh?
23 March 2013
Life being happy ;-)
Looked at the blog today, and realized that I'd never posted some really cool pics of the kids that my mom took when she was here back in October.
This one is a nifty one of Iain at a climbing structure at Gilroy Gardens...I brightened it up a bit so you can see his face better.
Here's a nice one of Iain at his walkathon, caught off guard:
And one with the both of them, again at Gilroy Gardens. Yep, she's a weed. Sometimes I think she'll be 7 feet tall when she's done!
Ria's aide started in the classroom in late February, and the change has been tremendous. Ria is able to finish all her "independent" work at her desk, and her anxiety has dropped dramatically (as she no longer needs to fear the desk work) making her more participatory through the whole school day. Her aide is also helping Ria at recess (we have a social goal in the IEP) to develop games that she can play with the other kids, so she is no longer mostly by herself on the playground - in fact, there is always a crowd with her!
Iain has been doing programming in Khan Academy online, and is having a lot of fun with it. He even gave a talk to his class one Friday afternoon to show them how to do/learn programming in it (they use Khan Academy in the classroom), and ran a little lunch time programming session with interested kids to help them get started. hee hee! It is so fun to watch him start to develop away from "little kid" ;-).
Life is good -- and the sun is out!! Happy days!
17 February 2013
Multiple Valentines of Joy!
Here's a little Valentine for you!
If you can't quite read it, the poem is:
I'm giving you a Valentine;
Don't put it on the shelf.
It's one that you can hold and love;
I'm giving you myself!
She wore it just about all day ;-).
On the morning of Valentine's Day, we had our 3rd IEP meeting for Ria, the big annual one, the one where we discuss how to meet her "intensive classroom needs." The one where we discuss if she is able to function in the classroom without the support of a classroom aide. (I think I failed to blog about IEP #2, which was just in December, where the district assigned Ria OT support.)
You will recall that last year's big IEP was rather disappointing, with us barely able to convince the district that they even needed to keep her on the radar. We were put in a "wait and see" mode, where we felt we had to let her struggle in the classroom for the level of her needs to become fully apparent.
Well -- our team THIS year, now that we are actually in a class in the district, and now that the district has hired a trained "inclusion specialist" who really knows what she is doing, is AWESOME! Ria's inclusion specialist meticulously documented how Ria's performance in the classroom was deteriorating and what was needed. In the end, we didn't have to fight at all. The district offered us a full time classroom assistant for Ria to support her needs! Yep, a full time aide, handed to us on a platter! WHEEE! The aide will be a "group" aide, as her needs aren't so bad that it has to be 1:1, but that is fine with us, we agree fully with that.
And if that wasn't enough of a Valentine from the district, we had an email on Friday saying that they have already hired her aide (they get a week grace period), and the aide will be starting on the Monday that we get back to school after break!!
I don't think I can properly describe how wonderful I feel. After the meeting, literally, the birds seems to sing more sweetly, the sky was bluer, and my mere existence on this earth felt more gentle and soft.
As our inclusion specialist says, the first step will be to undo the damage of the last 1/2 school year where she has been working without the support she needs.
I'm walking on sunshine....our little ray of light will get what she needs!
19 January 2013
Late Night Blatherings
William and I just finished watching a sweet movie called "Beginners"....got me in a thoughtful mood ;-)
Iain just came home from an overnight field trip to Fort Ross, which was (I think) the main southernmost Russian outpost in the early 1800's in California.
Iain left the house before Ria was awake on Thursday morning. On Thursday before we left for school, Ria wanted to check on Iain in his room.....then this morning (Friday) when she woke up she went straight to Iain's room to check on him, but he wasn't there. She was sad he was gone, but OK with it.
Tonight, after a special (gluten-free) pizza and movie night, as Ria went up to bed, Iain called to her (quietly) "I love you", and Ria said "I love you" back. It was so sweet.....Iain NEVER says "I love you" to Ria, he shows it, but doesn't say it anymore (those silly teen hormones are starting up! Its such a cute little baby moustache!), so it was so clear that he had missed her too.
I like that my kids miss eachother. Not all siblings like eachother, so its lovely that they do.
Gluten Free: We're doing some "Biomedical" work with Ria -- many autistic kids have, shall we say, odd biochemistry. The research is still working on it, its not quite figured out yet. Her gut has clear markers as being inflamed, so we're trying to "heal" her gut, make it happy. Inflamed guts don't absorb nutrients well, etc., etc. Gluten and Casein irritate inflamed guts, so we're taking her temporarily (6-12 months) off gluten and casein to help her heal up. The goal is to reduce sound sensitivities and, hopefully, get her off the Miralax she's been on since 10 months old.
Iain just came home from an overnight field trip to Fort Ross, which was (I think) the main southernmost Russian outpost in the early 1800's in California.
Iain left the house before Ria was awake on Thursday morning. On Thursday before we left for school, Ria wanted to check on Iain in his room.....then this morning (Friday) when she woke up she went straight to Iain's room to check on him, but he wasn't there. She was sad he was gone, but OK with it.
Tonight, after a special (gluten-free) pizza and movie night, as Ria went up to bed, Iain called to her (quietly) "I love you", and Ria said "I love you" back. It was so sweet.....Iain NEVER says "I love you" to Ria, he shows it, but doesn't say it anymore (those silly teen hormones are starting up! Its such a cute little baby moustache!), so it was so clear that he had missed her too.
I like that my kids miss eachother. Not all siblings like eachother, so its lovely that they do.
Gluten Free: We're doing some "Biomedical" work with Ria -- many autistic kids have, shall we say, odd biochemistry. The research is still working on it, its not quite figured out yet. Her gut has clear markers as being inflamed, so we're trying to "heal" her gut, make it happy. Inflamed guts don't absorb nutrients well, etc., etc. Gluten and Casein irritate inflamed guts, so we're taking her temporarily (6-12 months) off gluten and casein to help her heal up. The goal is to reduce sound sensitivities and, hopefully, get her off the Miralax she's been on since 10 months old.
18 January 2013
Cold.
I had to buy an ice scraper for my car.
Yep. We've had the car for almost 9 years, and this is the first time I've needed an ice scraper. Admittedly, pre-elementary-school-children I wasn't usually up so early, but still....
Yep. We've had the car for almost 9 years, and this is the first time I've needed an ice scraper. Admittedly, pre-elementary-school-children I wasn't usually up so early, but still....
07 January 2013
I wish I could show you....
I wish I could show you how cute the kids are right now. Ria is working on a Highlights Top Secret kit that she got from a classmate, and Iain is helping her. They are very cute. But I don't get to show you because, as usual, they are clad in nothing but their underwear.
25 December 2012
Happy Christmas!
On Christmas Eve, we ALL got new jammies!!!!
Ria wanted footies, Iain got penguins, Daddy got a new nightshirt, and I look like Lucia with my fancy stitching ;-)
We're a jammie loving family!
...And now it's Christmas Day, and Iain and Ria are lounging in the RUF (Ria's Ultimate Fort), which was built from the RUFK (Ria's Ultimate Fort Kit). Ria's too busy reading one of her fabulous new books to bother looking up from her side pod of the RUF.
Life is good.
23 December 2012
Baking
Happy Christmas! Or whatever you like to celebrate for the end of the year season ;-).
Here, we're making mince pies, as Daddy needs them for a proper Christmas. Ria did much of the work:
We kinda overfilled them though!
We're looking forward to lolling around and getting not much of anything done for a few weeks.
07 November 2012
Elections!
Off to bed....
Obama won!!! Whee!!!
Waiting on Prop 30 (California)....too close to call yet. We need it to pass.
Very disappointed that the repeal of the death penalty is not passing, but at least the 3 strikes law is being amended.
Oh, what a crazy system we have here in California with our amendments.....S L EE EE EE EE PY.
Obama won!!! Whee!!!
Waiting on Prop 30 (California)....too close to call yet. We need it to pass.
Very disappointed that the repeal of the death penalty is not passing, but at least the 3 strikes law is being amended.
Oh, what a crazy system we have here in California with our amendments.....S L EE EE EE EE PY.
29 October 2012
9-year old 4th grade boys
When Iain was in 1st grade, I ended up doing babysitting for classroom meetings for a 4th grade class. The 4th grade boys terrified me. They freaked me out. They were out of control, I felt, from my 1st grader viewpoint.
When I talked to other parents, they told me about how in 4th grade, when their boys were 9, suddenly they CHANGED. They wondered where their sweet little boy went.
I've been a little worried about this whole 9 year old 4th grade boy thing.
So far, though....I LOVE the whole 9 year old 4th grade boy thing! He understands delayed gratification! I ask him if he has homework, he says he does. I ask when he's planning to do it, he says "after dinner". Then, after dinner, he does his homework. That's it....no pushing, no 45 minute whine-a-thon. He just does it.
Yeah, he's a bit more moody. He's more annoying in how he deals with Ria when he's in "that place." But......I can explain to him how Ria receives his words, and he compensates. He changes his words to Ria so she can understand. I don't have to do much more than a few sentances (most times) to get him on track.
It is SO COOL.
I know there's a lot more 4th grade to go, but I no longer fear 4th grade boys. I think they're great ;-).
When I talked to other parents, they told me about how in 4th grade, when their boys were 9, suddenly they CHANGED. They wondered where their sweet little boy went.
I've been a little worried about this whole 9 year old 4th grade boy thing.
So far, though....I LOVE the whole 9 year old 4th grade boy thing! He understands delayed gratification! I ask him if he has homework, he says he does. I ask when he's planning to do it, he says "after dinner". Then, after dinner, he does his homework. That's it....no pushing, no 45 minute whine-a-thon. He just does it.
Yeah, he's a bit more moody. He's more annoying in how he deals with Ria when he's in "that place." But......I can explain to him how Ria receives his words, and he compensates. He changes his words to Ria so she can understand. I don't have to do much more than a few sentances (most times) to get him on track.
It is SO COOL.
I know there's a lot more 4th grade to go, but I no longer fear 4th grade boys. I think they're great ;-).
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