Sunday, February 03, 2008
Mother & babe
We've had a nice, low-key weekend with lots of family time... yay! Today, I had Jon take a few pictures of me with Lucy. I barely have any of me with the kids, since I'm usually the one behind the camera.
Friday, February 01, 2008
Book review: Seeing through new eyes
Last week, I finished reading Seeing through new eyes: Changing the lives of children with autim, Asperger syndrome and other developmental disabilities through vision therapy by Melvin Kaplan. Dr. Van Dyke at the Rimland Center tipped us off to this book and the work this author/doctor does. I had never heard of anything like it.
Kaplan uses prism lenses (special glasses) and vision therapy to alter how people see and perceive their world. He posits that many "undesired" behaviors we see in autism--toe-walking, hand-flapping, dragging hands along walls, stimming, staring at spinning objects (like Nate does)--are children's coping mechanisms, their "logical strategies for adapting to sensory disturbances" (p. 45). These children are "seeing" 20/20 but are not perceiving correctly. He writes that these behaviors are not the problem; they are the solution! They show us what is going wrong perceptually.
He writes that children's toe-walking, stimming with their hands, touching walls when they move "stem from their inability to handle both themselves and space simultaneously. To orient themselves, they flap their hands or touch objects, providing sensory input that tells them where they are in space" (p. 18). Many people with autism have problems with orientation of self (where am I?) and/or organization of space (where is it?).
The purpose of ambient prism lenses is "to actually alter perception in ways that cause patients to reoganize their visual processes[...]. The behavioral changes caused by this alteration of perception often are instantaneous and dramatic. Patients with autism or related disabilities have spent a lifetime developing strategies to compensate for their visual deficits. By the time they arrive at the optometrist's office, these strategies--eye turns, postural warps, self-stimulating behaviors, etc.--are habitual and ingrained. Ambient prism lenses instantly create a new visual world, in which those adaptive mechanisms are no longer either necessary or relevant. As a result, patients must rapidly re-awaken previously suppressed visual processes, in order to make sense of their altered surroundings" (p. 34). Kaplan believes that altering these patients' perception can level the playing field in a way, making it possible for other therapies to be even more effective.
Kaplan includes many interesting and relevant case studies in addition to descriptions of the tests he uses in his practice (including tests for non-verbal patients).
This book was a page turner for me, not only because I found the case studies so interesting, but also because I saw so many children I know reflected in the pages. I see many children at Nate's therapy center walking on their toes while dragging one hand along a wall while a therapist leads them by the other hand. Though I've read of other explanations of some of the behaviors (e.g., toe-walking is the body's response to painful GI tract problems), many of Kaplan's explanations really resonated with me.
I'm not sure if Nate is an excellent candidate for vision therapy, as he doesn't display some of the markers Kaplan mentions multiple times. Nate doesn't toe walk. He doesn't drag his hands along walls. He doesn't flap his hands regularly. However, here are the tidbits in the book I did highlight that describe Nate:
"[Individuals with autism] display a fetish for numbers and letters, as well as spinning objects [...]. Higher visual development, in contrast, involves smooth eye movements and visual search patterns. The autistic pattern is marked by static attention, which is unsustainable, where the latter involves dynamic attention and is sustainable. Dynamic attention requires a concentration of internal energy, and patients who cannot coordinate their eyes are unable to achieve this level of concentration" (p. 55).
"Sometimes children will be comfortable watching certain sections of a video, but cover their ears, scream, or turn their eyes away during other sections. Such behaviors provide valuable insights into the type and amount of visual and sensory input a patient is capable of handling" (p. 61).
There are other times when Nate seems to completely zone out/stare into space when a question is asked, and I've often interpreted it as sensory overload, which may include visual/perceptual components.
I plan on recommending this book to anyone who asks for my "long list" of autism treatment information.
Kaplan uses prism lenses (special glasses) and vision therapy to alter how people see and perceive their world. He posits that many "undesired" behaviors we see in autism--toe-walking, hand-flapping, dragging hands along walls, stimming, staring at spinning objects (like Nate does)--are children's coping mechanisms, their "logical strategies for adapting to sensory disturbances" (p. 45). These children are "seeing" 20/20 but are not perceiving correctly. He writes that these behaviors are not the problem; they are the solution! They show us what is going wrong perceptually.
He writes that children's toe-walking, stimming with their hands, touching walls when they move "stem from their inability to handle both themselves and space simultaneously. To orient themselves, they flap their hands or touch objects, providing sensory input that tells them where they are in space" (p. 18). Many people with autism have problems with orientation of self (where am I?) and/or organization of space (where is it?).
The purpose of ambient prism lenses is "to actually alter perception in ways that cause patients to reoganize their visual processes[...]. The behavioral changes caused by this alteration of perception often are instantaneous and dramatic. Patients with autism or related disabilities have spent a lifetime developing strategies to compensate for their visual deficits. By the time they arrive at the optometrist's office, these strategies--eye turns, postural warps, self-stimulating behaviors, etc.--are habitual and ingrained. Ambient prism lenses instantly create a new visual world, in which those adaptive mechanisms are no longer either necessary or relevant. As a result, patients must rapidly re-awaken previously suppressed visual processes, in order to make sense of their altered surroundings" (p. 34). Kaplan believes that altering these patients' perception can level the playing field in a way, making it possible for other therapies to be even more effective.
Kaplan includes many interesting and relevant case studies in addition to descriptions of the tests he uses in his practice (including tests for non-verbal patients).
This book was a page turner for me, not only because I found the case studies so interesting, but also because I saw so many children I know reflected in the pages. I see many children at Nate's therapy center walking on their toes while dragging one hand along a wall while a therapist leads them by the other hand. Though I've read of other explanations of some of the behaviors (e.g., toe-walking is the body's response to painful GI tract problems), many of Kaplan's explanations really resonated with me.
I'm not sure if Nate is an excellent candidate for vision therapy, as he doesn't display some of the markers Kaplan mentions multiple times. Nate doesn't toe walk. He doesn't drag his hands along walls. He doesn't flap his hands regularly. However, here are the tidbits in the book I did highlight that describe Nate:
"[Individuals with autism] display a fetish for numbers and letters, as well as spinning objects [...]. Higher visual development, in contrast, involves smooth eye movements and visual search patterns. The autistic pattern is marked by static attention, which is unsustainable, where the latter involves dynamic attention and is sustainable. Dynamic attention requires a concentration of internal energy, and patients who cannot coordinate their eyes are unable to achieve this level of concentration" (p. 55).
"Sometimes children will be comfortable watching certain sections of a video, but cover their ears, scream, or turn their eyes away during other sections. Such behaviors provide valuable insights into the type and amount of visual and sensory input a patient is capable of handling" (p. 61).
There are other times when Nate seems to completely zone out/stare into space when a question is asked, and I've often interpreted it as sensory overload, which may include visual/perceptual components.
I plan on recommending this book to anyone who asks for my "long list" of autism treatment information.
Wednesday, January 30, 2008
AWANA
This is my third year helping with the Cubbies (3-4 year olds) at our church's AWANA program. I think it is such a terrific program and a wonderful way to help kids hide God's word in their hearts. I am amazed at how well 3 year olds can memorize scripture and then recall it weeks or months later. I am also amazed at how completely exhausted I am every Wednesday night after helping wrangle 24 kids!
Tonight was leader thank you night. Here are two of my favorite notes:
Tonight was leader thank you night. Here are two of my favorite notes:
Tuesday, January 29, 2008
Monday, January 28, 2008
Diapers
For all you moms of young ones, you have to check out Diapers.com. I just bought the same diapers I buy at Costco at the same price, with free shipping on orders over $50 (and, if I buy a Costco-sized pack for Lucy and for Nate, that's always over $50). They take manufacturers' coupons (you have to mail them in, and then they apply the coupons to future orders) and give a discount toward future purchases if you spend over a certain amount. They also have wipes and other baby products.
If you do end up buying from here, would you input my referral code? You'll get $5 off your first order, and I also get a $1 credit. My code is KAVA1225.
If you do end up buying from here, would you input my referral code? You'll get $5 off your first order, and I also get a $1 credit. My code is KAVA1225.
Sunday, January 27, 2008
Observations after two weeks on m-B12
Welcome to the new permission-only blog! :)
We've been giving Nate the at-home methyl-B12 shots for two weeks now. His sleep is back to acceptable levels (not great, but acceptable)--he's going to bed at a regular 8:00 and getting up usually between 6:00 and 7:00, with night wakings still common. We put a gate on his door, which is helping.
At the end of every day this past week (Monday-Friday), I sat down and thought, "Wow, today was a pretty good day." No major meltdowns, generally good cooperation, good language. Nate has also started asking a few questions in the last week to 10 days, including, "Who it is?" when I answered the door and he couldn't see who it was, and "Mama, where are you?" a couple of times (he seemed to be saying that one more to himself than actually calling out to me, but still, it's a great step). He has never asked questions before.
In general, Nate just looks healthier: his complexion is smoother and brighter, and the bumps on his legs are better. I attribute these changes to the diet but also recognize that m-B12 could be contributing.
The actual shot-giving is not too fun. It requires two of us (one to hold down, one to give), and Nate doesn't like it at all. He still cried this last time, but he didn't act like the shot hurt him, so that's good. I'm planning on asking the doctor this week for some EMLA (numbing) cream.
Overall, I'm pleased with the lessening of bad side effects and am excited to see what other positive changes occur.
We've been giving Nate the at-home methyl-B12 shots for two weeks now. His sleep is back to acceptable levels (not great, but acceptable)--he's going to bed at a regular 8:00 and getting up usually between 6:00 and 7:00, with night wakings still common. We put a gate on his door, which is helping.
At the end of every day this past week (Monday-Friday), I sat down and thought, "Wow, today was a pretty good day." No major meltdowns, generally good cooperation, good language. Nate has also started asking a few questions in the last week to 10 days, including, "Who it is?" when I answered the door and he couldn't see who it was, and "Mama, where are you?" a couple of times (he seemed to be saying that one more to himself than actually calling out to me, but still, it's a great step). He has never asked questions before.
In general, Nate just looks healthier: his complexion is smoother and brighter, and the bumps on his legs are better. I attribute these changes to the diet but also recognize that m-B12 could be contributing.
The actual shot-giving is not too fun. It requires two of us (one to hold down, one to give), and Nate doesn't like it at all. He still cried this last time, but he didn't act like the shot hurt him, so that's good. I'm planning on asking the doctor this week for some EMLA (numbing) cream.
Overall, I'm pleased with the lessening of bad side effects and am excited to see what other positive changes occur.
Thursday, January 24, 2008
Home ownership: not so glamorous
Well, the exciting thing around our house this week involved our entire master bedroom closet collapsing. The long board attached to the wall finally gave way after 30 years of tension, and that board was the only thing holding up the pole/rod and all of our clothes and stuff.
I've been spending nap time today and yesterday browsing online for different closet systems and equipment we can install ourselves instead of just re-screwing the old, sagging board and rod back in there. I've dreamily looked at the custom closets with drawers, shoe compartments, varying height hanging rods, etc., but we will probably get some wire shelves and rods and install them ourselves. It'll still be nicer than what we had. Meanwhile, all of our clothes are neatly piled in strategic places around the house!
I've been spending nap time today and yesterday browsing online for different closet systems and equipment we can install ourselves instead of just re-screwing the old, sagging board and rod back in there. I've dreamily looked at the custom closets with drawers, shoe compartments, varying height hanging rods, etc., but we will probably get some wire shelves and rods and install them ourselves. It'll still be nicer than what we had. Meanwhile, all of our clothes are neatly piled in strategic places around the house!
Monday, January 21, 2008
Privacy
[Edit: I'm going to leave this post at the top of my blog for another few days, and then I'll change the blog and send out the e-mail permissions. As I said, I want everyone who reads already to be able to continue to read, whether or not I know you're there. :)]
I've decided to turn this blog into a "permission only" blog. Since I post so many pictures and personal/family information, I don't want just anyone to be able to see it. I want everyone who reads now to continue to read, and anyone else who comes along and has a genuine interest is welcome too, especially those looking for autism information. To read the blog, I need to invite you to join by adding your e-mail to my list, and I think you'll have to log in to be able to view the blog. If I don't know your e-mail address and you want to be added, please either comment with your e-mail address (you can be a bit sneaky by adding spaces or words so that spammers don't find your address. For example, k a t i e "at" yahoo "dot" com) or e-mail me at my first and last name dot cox dot net.
Thanks for understanding!
I've decided to turn this blog into a "permission only" blog. Since I post so many pictures and personal/family information, I don't want just anyone to be able to see it. I want everyone who reads now to continue to read, and anyone else who comes along and has a genuine interest is welcome too, especially those looking for autism information. To read the blog, I need to invite you to join by adding your e-mail to my list, and I think you'll have to log in to be able to view the blog. If I don't know your e-mail address and you want to be added, please either comment with your e-mail address (you can be a bit sneaky by adding spaces or words so that spammers don't find your address. For example, k a t i e "at" yahoo "dot" com) or e-mail me at my first and last name dot cox dot net.
Thanks for understanding!
Furniture
We currently have a cheap-o, all-wires-and-other-junk-exposed, no-drawers Ikea computer desk in our kitchen. I'm looking for a nice-looking, decent quality desk or armoire to go in its place. It needs to be 40" wide or less and, ideally, have a file drawer, a place for our small printer, and drawers for pens and accessories. I'm looking at the $500-1000 price range.
Here are some of the not-quite-perfect ones I've found:
This one has lots of great storage and some cool features, but I'm not crazy about the louvered doors.
I love the closed look on this one (full info here), but it is too wide.
This one (full info here) is pretty close, though I'm not sure about the quality.
I liked this one a lot and almost got it, but I rethought it since it didn't have a place for the printer and also couldn't bear the weight of resting elbows on the desk part.
I have looked at Pottery Barn, Crate & Barrel, Ethan Allen (too expensive and not my style), Ballard Designs, and Home Decorators Collection.
Where do you shop for furniture like this?
Edit: I found something that will work very well for us. Yay! :)
Here are some of the not-quite-perfect ones I've found:
This one has lots of great storage and some cool features, but I'm not crazy about the louvered doors.
I love the closed look on this one (full info here), but it is too wide.
This one (full info here) is pretty close, though I'm not sure about the quality.
I liked this one a lot and almost got it, but I rethought it since it didn't have a place for the printer and also couldn't bear the weight of resting elbows on the desk part.
I have looked at Pottery Barn, Crate & Barrel, Ethan Allen (too expensive and not my style), Ballard Designs, and Home Decorators Collection.
Where do you shop for furniture like this?
Edit: I found something that will work very well for us. Yay! :)
Monday
This is how I found Nate sleeping last night when I went to check on him.
And this is what Lucy looks like when she has a cold. :(
And this is what Lucy looks like when she has a cold. :(
Saturday, January 19, 2008
Let's dance!
I put on the video from this past summer's VBS, which we haven't watched in months. Nate knows many of the words and motions! It is so joyful to hear children singing praise songs, even when they don't fully understand what they're singing.
Thursday, January 17, 2008
Pictures
Some cuteness from this week.
Nate used my duster on the banister and kept telling us he was painting.
Lucy with her grammy.
Nate used my duster on the banister and kept telling us he was painting.
Lucy with her grammy.
Monday, January 14, 2008
Aha!
Nate came down with a high fever on Friday (it was 103.7 when we took it that evening), and he was lethargic, fussy, tired, and had no appetite throughout the weekend. Jon stayed home from church with him yesterday. Today, his fever is finally gone, and he broke out in a rash. I was proud of myself for knowing it's roseola. I don't know what the incubation period is, but so far Lucy hasn't exhibited any symptoms (fever). Yay for unharmful illnesses! :)
Friday, January 11, 2008
Milestone
Lucy is crawling! She has been close for a few weeks now, but last night she decided to get her legs up underneath her and scoot to something she really wanted. So far, she has only gone a few "steps," and she keeps one leg sort of straight with that foot on the ground.
It's fun to watch Lucy hit each little milestone. During the past couple of weeks, she has also started giving kisses, clapping, waving, and, just yesterday, playing peekaboo. She still doesn't have any teeth (!), but she is gumming a whole bunch of foods anyway (just tried and liked hot dog this week. I "skinned" it to help with the no teeth thing.).
Here's Nate in my shoes. The only way I can get him to look like he's sort of smiling is to have him "wink." When he smiles, he says "Eeeee" but doesn't look happy.
And Lucy disliking her first taste of deli meat turkey...
It's fun to watch Lucy hit each little milestone. During the past couple of weeks, she has also started giving kisses, clapping, waving, and, just yesterday, playing peekaboo. She still doesn't have any teeth (!), but she is gumming a whole bunch of foods anyway (just tried and liked hot dog this week. I "skinned" it to help with the no teeth thing.).
Here's Nate in my shoes. The only way I can get him to look like he's sort of smiling is to have him "wink." When he smiles, he says "Eeeee" but doesn't look happy.
And Lucy disliking her first taste of deli meat turkey...
Thursday, January 10, 2008
Getting used to insensitivity
I wasn't going to post about this, but I've been thinking about it all morning, so I'm at least going to write about it and then might or might not publish the post.
Last night, I went early to our Cubbies classroom at church to set up for AWANA. The school teacher was still in there, so she and I talked while I set up. I had Nate and Lucy with me, so Lucy sat in the stroller and I set up some crayons and coloring sheet to occupy Nate. (It was quite cute: the sheet was a picture of Noah and the ark, and after I told Nate that, he started singing the "Who built the ark?" song, which we haven't sung together in some time.)
Nate's autism came up. The first thing the teacher said was, "Oh, I had two boys in my class last year with autism," and she raised her eyebrows and cocked her head in an expression of "can you believe that? Just my terrible luck." She talked about how some days were OK, but other times one or both of the boys would just be unmanageable, and she'd "finally just have to send one home."
I'm sure I'm a little hyper-sensitive right now as I'm running on way less sleep than I need, but still, come on lady! I'm a mom to one of those boys!
My first thought was, "Well, I just hope Nate doesn't end up with a teacher like her one day." But he probably will. I'd like to prepare myself for it now, not be blindsided or shocked when it happens. Even teachers who may end up loving Nate would not choose to have "someone like him" in their classrooms, because it means more work for them. And when they read the piece of paper that says they're teaching a boy with autism this year, they don't see the cute, funny, aiming to please, smart boy they'll be teaching; they see a piece of paper, words, AUTISM.
Just like many parents begin praying for their children's future spouses years ahead of time, I can begin praying for Nate's future teachers--that God would prepare their hearts and pave the way for Nate, placing him in the right classrooms with the right teachers and classmates.
There, I feel better! :)
Last night, I went early to our Cubbies classroom at church to set up for AWANA. The school teacher was still in there, so she and I talked while I set up. I had Nate and Lucy with me, so Lucy sat in the stroller and I set up some crayons and coloring sheet to occupy Nate. (It was quite cute: the sheet was a picture of Noah and the ark, and after I told Nate that, he started singing the "Who built the ark?" song, which we haven't sung together in some time.)
Nate's autism came up. The first thing the teacher said was, "Oh, I had two boys in my class last year with autism," and she raised her eyebrows and cocked her head in an expression of "can you believe that? Just my terrible luck." She talked about how some days were OK, but other times one or both of the boys would just be unmanageable, and she'd "finally just have to send one home."
I'm sure I'm a little hyper-sensitive right now as I'm running on way less sleep than I need, but still, come on lady! I'm a mom to one of those boys!
My first thought was, "Well, I just hope Nate doesn't end up with a teacher like her one day." But he probably will. I'd like to prepare myself for it now, not be blindsided or shocked when it happens. Even teachers who may end up loving Nate would not choose to have "someone like him" in their classrooms, because it means more work for them. And when they read the piece of paper that says they're teaching a boy with autism this year, they don't see the cute, funny, aiming to please, smart boy they'll be teaching; they see a piece of paper, words, AUTISM.
Just like many parents begin praying for their children's future spouses years ahead of time, I can begin praying for Nate's future teachers--that God would prepare their hearts and pave the way for Nate, placing him in the right classrooms with the right teachers and classmates.
There, I feel better! :)
Wednesday, January 09, 2008
Fashion
I've spent Lucy's nap time looking for some boots to buy with some editing money. I've never really had boots, and I like the look of them under jeans. I want some basic, brown, ankle- or calf-height, not too pointy toed but not round toed boots. Here's what I've found....
You have to be kidding me. And these are just the ones under $150!
I have found a few cute pairs I like (not these!), but I fear the toes are too pointy for my feet.
Here is a cute pair from Target (thanks, Shey), but I forgot to include as part of my requirements that it needs to be from a place that accepts Paypal. :)
You have to be kidding me. And these are just the ones under $150!
I have found a few cute pairs I like (not these!), but I fear the toes are too pointy for my feet.
Here is a cute pair from Target (thanks, Shey), but I forgot to include as part of my requirements that it needs to be from a place that accepts Paypal. :)
Monday, January 07, 2008
Start of the week
Jon is home very sick today, poor guy.
Nate, Lucy, and I are in the kitchen. Nate is "washing dishes" in the sink, and Lucy is having a ball with Trader Joe's bags and empty bottles on the floor. Who needs toys?
Nate, Lucy, and I are in the kitchen. Nate is "washing dishes" in the sink, and Lucy is having a ball with Trader Joe's bags and empty bottles on the floor. Who needs toys?
Saturday, January 05, 2008
Things to remember
Jon and I went to dinner last night (we tried a new restaurant, French 75, and loved it while Jon's dad came over to our house; the kids were already asleep). We talked about some of the cute things Nate has been doing lately and how we don't want to forget them.
- No matter the time of day, if he wants to eat, he says, "Time to fix dinner!"
- Just a few weeks ago, he would say "keekeeboowa" for computer. Now he pronounces it correctly.
- A few times lately, he has asked for a spanking. When Jon drove him to therapy the other morning, Nate spent some time in the car screaming because he didn't want to go. After a few minutes, he said, "Spank! Spanking!" It's sad but cute.
- He does really well at the park when other children are around. He waits at the top of the slide for the child in front of him to go down, and then he sees that the child is off the bottom of the slide before he goes. He learned this mostly at therapy.
- He thinks every baby is Lucy. When we went to visit my new niece (Jon's sister's third child), Nate went right over and gave her a kiss. A minute later, he explained, "Kiss Wucy!"
- After a bath, he likes to walk around "free" for a minute. He comes out of the bathroom, beaming, and exclaims, "Jaybuwd!"
A not-so-cute side note: he has gotten up for the day between 4:15 and 4:45 a.m. every morning since we returned from Virginia. It was like a treat today when he made it until 5:00.
Thursday, January 03, 2008
Monday, December 31, 2007
Rimland Center
Our visits to the Rimland Center this week were very successful and promising. I went in trying not to expect too much... I thought we'd walk away with a list of labs to have run on Nate and nothing more, so I was pleasantly surprised when much more than that was accomplished.
I liked Dr. Van Dyke a lot. He actually listens! to what parents say! and believes them! We spent the majority of the first appointment giving a more detailed history (does Nate do this? does he not do that? what are his specific stims? diet? physical activity?). I hadn't really thought about it before, but most of Nate's stims are visual in nature (his main one is his obsession with watching things spin). Dr. Van Dyke's own 5-year-old son with autism is the same way, he told us, and he also told us about a new type of therapy I hadn't heard of before: vision therapy using prism lenses. I'm really excited about looking further into this; I'm buying the doc's recommended book, Seeing Through New Eyes.
The doctor also supported and liked our use of enzymes and GFCF diet, since those are usually the first two things he has parents do. We talked about the next steps in Nate's treatment, and we started one the next day, at his second appointment! I was thrilled to be able to start something, to be doing and not just reading/talking.
So, this new treatment is called methylation, and it involves giving Nate a vitamin B12 shot once every three days and adding in three new supplements: DMG, taurine, and folinic acid. The shot is methyl B12 because it's in a form even more usable by the body than the usual B12 shots some people get. I had read about methylation--in fact, I had just finished with the chapter about it in Children with Starving Brains. I've done some reading since then, too (see here, here, and here), and I still don't think I can adequately explain what it is or what it does. However, it helps the majority of children with autism in some way, so it's a good treatment to try first. (And, since it really can't hurt, Dr. Van Dyke likes to try it right away rather than wait for lots of testing that may or may not tell us whether it would be beneficial. I'm all about the doing and not just talking!) This stuff is going to help at a cellular level with things like oxidation/lowering oxidative stress, because "an increased vulnerability to oxidative stress and a decreased capacity for methylation may contribute to the development and clinical manifestation of autism" (James, Cutler, Melnyk, Jernigan, Janak, Gaylor, & Neubrander, here). The benefits should also manifest themselves in behavioral improvement: more social language, more efforts at imaginary play, etc.
With one of the Rimland Center specialists' supervision, Jon gave Nate his first MB12 shot on Friday. I don't think the shot hurt him; I think he cried because he didn't want me holding him still. In the two days after the shot, Nate seemed lethargic, more stimmy, much more whiny, and less cooperative. Hmm. I'm hoping it's his body adjusting the same way it has to the other treatments we've done. Since the shot, I have noticed a couple of positive changes that definitely could be attributed to the MB12: 1) for the first time ever, Nate made up a song and sang it (it was a song about going to the airport when we were on the way there. It had only a couple of words, but it was still cool); 2) he started saying please much of the time without prompting, and today he even said, "yes, ma'am" without my having to tell him to. Cool!
In addition to the MB12, taurine, folinic acid, and DMG, we are going to start several other supplement-type things that we can buy without a prescription. These include a liquid aloe vera to help even more with inflammation and the GI tract, fish oil (not just cod liver oil) for essential fatty acids, and one or two more things I can't remember off the top of my head.
We are going to do a few labs to determine some more about Nate, including whether or not his elevated ammonia levels on a previous test are correct. Some of these labs might indicate what future treatments, like antifungals for yeast overgrowth, we'll try.
Overall, we are so encouraged and excited about all of these treatments and love the Rimland Center.
I liked Dr. Van Dyke a lot. He actually listens! to what parents say! and believes them! We spent the majority of the first appointment giving a more detailed history (does Nate do this? does he not do that? what are his specific stims? diet? physical activity?). I hadn't really thought about it before, but most of Nate's stims are visual in nature (his main one is his obsession with watching things spin). Dr. Van Dyke's own 5-year-old son with autism is the same way, he told us, and he also told us about a new type of therapy I hadn't heard of before: vision therapy using prism lenses. I'm really excited about looking further into this; I'm buying the doc's recommended book, Seeing Through New Eyes.
The doctor also supported and liked our use of enzymes and GFCF diet, since those are usually the first two things he has parents do. We talked about the next steps in Nate's treatment, and we started one the next day, at his second appointment! I was thrilled to be able to start something, to be doing and not just reading/talking.
So, this new treatment is called methylation, and it involves giving Nate a vitamin B12 shot once every three days and adding in three new supplements: DMG, taurine, and folinic acid. The shot is methyl B12 because it's in a form even more usable by the body than the usual B12 shots some people get. I had read about methylation--in fact, I had just finished with the chapter about it in Children with Starving Brains. I've done some reading since then, too (see here, here, and here), and I still don't think I can adequately explain what it is or what it does. However, it helps the majority of children with autism in some way, so it's a good treatment to try first. (And, since it really can't hurt, Dr. Van Dyke likes to try it right away rather than wait for lots of testing that may or may not tell us whether it would be beneficial. I'm all about the doing and not just talking!) This stuff is going to help at a cellular level with things like oxidation/lowering oxidative stress, because "an increased vulnerability to oxidative stress and a decreased capacity for methylation may contribute to the development and clinical manifestation of autism" (James, Cutler, Melnyk, Jernigan, Janak, Gaylor, & Neubrander, here). The benefits should also manifest themselves in behavioral improvement: more social language, more efforts at imaginary play, etc.
With one of the Rimland Center specialists' supervision, Jon gave Nate his first MB12 shot on Friday. I don't think the shot hurt him; I think he cried because he didn't want me holding him still. In the two days after the shot, Nate seemed lethargic, more stimmy, much more whiny, and less cooperative. Hmm. I'm hoping it's his body adjusting the same way it has to the other treatments we've done. Since the shot, I have noticed a couple of positive changes that definitely could be attributed to the MB12: 1) for the first time ever, Nate made up a song and sang it (it was a song about going to the airport when we were on the way there. It had only a couple of words, but it was still cool); 2) he started saying please much of the time without prompting, and today he even said, "yes, ma'am" without my having to tell him to. Cool!
In addition to the MB12, taurine, folinic acid, and DMG, we are going to start several other supplement-type things that we can buy without a prescription. These include a liquid aloe vera to help even more with inflammation and the GI tract, fish oil (not just cod liver oil) for essential fatty acids, and one or two more things I can't remember off the top of my head.
We are going to do a few labs to determine some more about Nate, including whether or not his elevated ammonia levels on a previous test are correct. Some of these labs might indicate what future treatments, like antifungals for yeast overgrowth, we'll try.
Overall, we are so encouraged and excited about all of these treatments and love the Rimland Center.
Christmas trip
We had a really great time in Virginia this past week. This trip was so pleasant, relaxing, and fun, mostly because Nate was in such a better place developmentally compared to last time we were there (July). The plane rides out to VA on 12/23 were surprisingly easy, and we arrived to see my parents' new (to them), beautiful home (it's on the same street as their old house). Nate slept in a twin bed with some chairs pushed against it so it felt like he had a little railing like his bed at home has (funny story to come about this). We had a full, fun Christmas day, and the rest of the trip was spent doing things around the house and spending time together as a family. Here are some of my favorite pictures out of the 200 I took. :)
Nate "winking"
No one noticing Lucy's snack...
Jon's ability to sleep through anything
Our second night there, we put the children to bed and all watched a movie. My dad went to go to bed, but he came back and asked, "Is Nate supposed to be in the hall?" Nate was asleep in the hall, flat on his back with arms and legs straight, with his blanket wrapped around his head. The next night, I thought Nate might want a little light in the room so I left the bathroom light on when we put him to bed. Hours later, when my sis Lucy was going to bed, she found Nate half asleep on the bathroom floor with his blanket. Poor boy! He did fine the other nights.
Lucy started doing a number of new things this week. She started giving kisses on the trip out there. She also started clapping her hands and clicking her tongue. Yay Luce!
I haven't even mentioned Nate's appointment at Rimland Center, because I'm writing a separate post about that. Here's a preview: it was GREAT.
Nate "winking"
No one noticing Lucy's snack...
Jon's ability to sleep through anything
Our second night there, we put the children to bed and all watched a movie. My dad went to go to bed, but he came back and asked, "Is Nate supposed to be in the hall?" Nate was asleep in the hall, flat on his back with arms and legs straight, with his blanket wrapped around his head. The next night, I thought Nate might want a little light in the room so I left the bathroom light on when we put him to bed. Hours later, when my sis Lucy was going to bed, she found Nate half asleep on the bathroom floor with his blanket. Poor boy! He did fine the other nights.
Lucy started doing a number of new things this week. She started giving kisses on the trip out there. She also started clapping her hands and clicking her tongue. Yay Luce!
I haven't even mentioned Nate's appointment at Rimland Center, because I'm writing a separate post about that. Here's a preview: it was GREAT.
Thursday, December 27, 2007
Merry Christmas
We are having a great time in VA. My parents' new house (they bought a new house down the street from their old one and moved in this month) is really wonderful--spacious and beautiful. Christmas day was very nice, with lots of family and good food.
Today, we had the first of Nate's two Rimland Center appointments. It went really well; I loved the doctor and am so encouraged and excited about what's in store. I'll write more after his appointment tomorrow, where we're starting the next kind of treatment (in addition to diet, enzymes, and the other stuff we're already doing).
Today, we had the first of Nate's two Rimland Center appointments. It went really well; I loved the doctor and am so encouraged and excited about what's in store. I'll write more after his appointment tomorrow, where we're starting the next kind of treatment (in addition to diet, enzymes, and the other stuff we're already doing).
Friday, December 21, 2007
Tuesday, December 18, 2007
Fun with videos
It's raining lightly at our house, and I love the sound of it hitting the skylight above our stairs.
Here are some quick cute things!
Lucy thinks it's fun to "clap" Nate's head (and I love that he lets her--even thinks it's funny--and is gentle back to her):
Nate (and me) singing this morning (wait for the end of the song):
Lucy doing this silly face/breathing thing she has started this week:
I just finished putting together a quick look at the progression Nate has made with his speech over the past several months. It's pretty amazing to think about how far he has come:
Here are some quick cute things!
Lucy thinks it's fun to "clap" Nate's head (and I love that he lets her--even thinks it's funny--and is gentle back to her):
Nate (and me) singing this morning (wait for the end of the song):
Lucy doing this silly face/breathing thing she has started this week:
I just finished putting together a quick look at the progression Nate has made with his speech over the past several months. It's pretty amazing to think about how far he has come:
Saturday, December 15, 2007
Sweet times
This morning, we were all playing together in the master bedroom, and I asked Nate what he was holding. He said, "Fwashwight," (it was Jon's keychain flashlight) and then he said, "Show Lucy fwashwight." He walked over, sat on the floor next to Lucy, and pointed the flashlight at his face and said, "Cheese!" It was cute and also a first: he has never wanted to show Lucy anything before. Yay Nate!
I also wanted to document a couple of things he has been doing lately at mealtime:
- the cute way he says applesauce: "applehoss."
- when he eats pancake (gluten free, of course), he will randomly call out words like "sock!" or "cat!" After a few times of him doing that, I realized he was saying that about the pancake and whatever shape he had happened to eat it into.
I also wanted to document a couple of things he has been doing lately at mealtime:
- the cute way he says applesauce: "applehoss."
- when he eats pancake (gluten free, of course), he will randomly call out words like "sock!" or "cat!" After a few times of him doing that, I realized he was saying that about the pancake and whatever shape he had happened to eat it into.
Wednesday, December 12, 2007
50 random things about me
I've seen several others write these lists on their blogs, and I thought it'd be fun to do one too. Let's see how long it takes me to think of that many things about me! (I started this list on 11/28, and it started out as "101 random things about me," but I just can't think of any other interesting things, so I'm stopping at 50.)
- I was born in Little Rock, Arkansas, and lived there until I was 8.
- I have also lived in Marshfield, Massachusetts (outside of Boston), and 4 cities in Southern California.
- I consider California my home.
- I began playing the flute when I was 10 years old. (Still play today.)
- My favorite food is avocados.
- I graduated college in 3 years.
- I sing and play flute on the worship team at my church.
- I get more nervous singing than I do playing the flute.
- I pay the bills for our family. (To clarify: Jon makes the money, but I pay the bills!)
- I have a younger brother, Greg, and younger sister, Lucy. I think I'm a typical oldest child.
- I love dangly earrings.
- I have a shoe fetish and could easily buy a hundred pairs if I had limitless funds.
- I played basketball and softball in high school. I wasn't extremely good at either one but especially not at basketball.
- I broke my nose playing softball.
- I also broke my arm in two places while rollerblading when I was 10.
- I won my school's spelling bee in 5th grade.
- I would love to be able to have a craft/sewing room one day. The main reason I haven't scrapbooked in well over a year is it takes too long to get out and set up all the stuff.
- If I could play another musical instrument, it would be the cello.
- I am very dependable. I believe if I say I'm going to be somewhere or do something, I should be there or do it... on time.
- I am an introvert. I need time alone to recharge.
- I have always liked that I have small feet... size 6.
- My labors with Nate and Lucy were very different: Nate 23 hours with pitocin and epidural; Lucy 3 hours with no medicine (almost didn't make it to the hospital).
- If I had a day completely free of responsibility, I would sleep in, go out to coffee, get a pedicure, have a big salad for lunch while reading a good book, then do something craft-related (sewing, scrapbooking, etc.) late into the night.
- I was an English major in college.
- I went to Pepperdine University.
- One of my favorite authors is Ursula Hegi.
- Some of my favorite musicians are Chris Rice, Fernando Ortega, and Bebo Norman.
- I don't really like to go shopping. If I need something, I am in and out of the store quickly. I prefer online shopping, especially if the site takes Paypal.
- One of the first things I noticed about my husband when we met was his deep voice.
- One of my favorite things about him now is his gentle, even temper.
- We named our son, Nathaniel (Nate), after Jon's best friend, Nathan (Nate). Nate Johnson was Jon's high school youth leader, and they became close friends who have remained close for over 12 years.
- We named our daughter, Lucy, after my sister. My sister is sweet, easy-going, quick to laugh, smart, fun-loving, with a strong faith. We would love our daughter to end up the same way.
- We didn't intend to name both of our children after other people; it just ended up that way. ...Wow, it's already December 8 and I've only come up with 33 things about myself. This is hard.
- I wear contact lenses and hope to have laser eye surgery one day. My vision isn't that terrible, but it's bad enough that I don't go without glasses or contacts.
- I don't like staying in PJs all day; I like to get showered, dressed, and ready for the day pretty soon after I wake up. I usually get the kids dressed right away too.
- I feel naked without makeup.
- My favorite books as a child were The Chronicles of Narnia, Matilda, and the Laura Ingalls books.
- My mom says I taught my sister how to read. (I was probably 9 and she was 3.)
- This list has been my way to put off doing all of the editing jobs that have been streaming in. (I do freelance editing work for grad students.)
- One of my favorite housecleaning chores is mopping.
- One of my least favorite housecleaning chores used to be emptying the dishwasher, but now that Nate "helps," I sort of look forward to it.
- My friend Casey once said, "I'm so bad about remembering to dust the baseboards in my house." I said, "You dust what?"
- I truly enjoy watching most sports. I know the rules too. (Favorites: basketball and football. Least favorites: soccer and hockey--not enough scoring.)
- My first job, besides babysitting, was as a bus person at a restaurant in Scituate, Massachusetts, for its Sunday brunch. I was 15.
- My other high school jobs were at a Christian book store (didn't like it much) and teaching swim lessons (liked it).
- When I was about 10, I wanted to become an astronaut. This desire didn't last very long, but I remember it well; I even wrote to NASA to ask what classes I should take in college. :)
- I have one best friend and several other girlfriends. I'm not the type to have a ton of close friends.
- I got my worst haircut when I was 16 or 17. I brought a picture of the style I wanted to the salon, and the girl just butchered my hair, creating a style that looked absolutely nothing like the one in the picture. It took months to grow out. Now I'm more adventurous with my hair... with color at least, but probably not really with cut.
- I'm not sure whether we'll have more children. Before we had kids, I thought I'd have 3 or 4, but now I'm not so sure!
- If we were to have more kids, I like the name Isaac Spencer for a boy.
Sunday, December 09, 2007
Friday, December 07, 2007
This morning - updated
Nate had an appointment with the neurologist this morning (a follow-up from his original appointment in March... this has been a long time in coming, since they were supposed to see him after 3 months. This office has definitely not earned a high grade in my book for efficiency, timeliness, following up, or generally knowing what the heck is going on.).
It went how I would have predicted: the doctor praised the fact that we have Nate in behavioral therapy and heavily discounted all of the biomedical stuff we're doing. She would barely let me get a sentence in about how I feel the biomedical treatments are helping; she spoke over me repeatedly about how she doesn't believe they work. The only thing I was able to say without interruption was, "If it doesn't hurt my son but might help him, I'm going to do it." I am not surprised or disheartened, but I am sad for all those other families who blindly, hopefully (that is, full of hope) trust what their knowledgeable doctor says and therefore don't try these other treatments. Anyway, Nate had several melt-down moments while we were in the appointment, and the doctor had some really nice and encouraging things to say about how I handled those from a behavioral standpoint.
The doc ordered some more blood work (everything so far has come back normal) and asked for another follow-up appointment in six months.
It went how I would have predicted: the doctor praised the fact that we have Nate in behavioral therapy and heavily discounted all of the biomedical stuff we're doing. She would barely let me get a sentence in about how I feel the biomedical treatments are helping; she spoke over me repeatedly about how she doesn't believe they work. The only thing I was able to say without interruption was, "If it doesn't hurt my son but might help him, I'm going to do it." I am not surprised or disheartened, but I am sad for all those other families who blindly, hopefully (that is, full of hope) trust what their knowledgeable doctor says and therefore don't try these other treatments. Anyway, Nate had several melt-down moments while we were in the appointment, and the doctor had some really nice and encouraging things to say about how I handled those from a behavioral standpoint.
The doc ordered some more blood work (everything so far has come back normal) and asked for another follow-up appointment in six months.
Wednesday, December 05, 2007
Saturday, December 01, 2007
Videos
This first one is sad but cute. I took the video because Nate was singing with the music, but he ends up saying "Hold you" like I wrote about last week.
Here is Lucy. She started sitting really well this week.
Here is Lucy. She started sitting really well this week.
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