OK. We're going to do it. We're going to put the whole family on the GAPS diet. My plan had been to put just Nate and me on the diet (and probably "partial participation" for the other two children), but last night Jon said he would do it with us too. I am actually very excited... and nervous too. So for the past couple of weeks, I've been gathering ingredients and supplies that I don't already have, making and storing various dishes (sauerkraut, homemade chicken stock and meat stock), and researching sources for organic ingredients. I think it'll take me a couple more weeks before I'm ready to start, so I'm shooting for a February 1 start date.
Rewind for a minute: have I mentioned the GAPS diet on this blog yet? I might not have! Basically, I've been reading up on it a lot and am finding that gluten-free, casein-free, soy-free might just have been partially/indirectly dealing with Nate's "internal" issues and not fully addressing the real issue. The GAPS diet works in stages, with the introduction/first stage being quite restrictive; you add in more and more foods with each stage until you reach the "full GAPS" diet, which you maintain for a while (think 2 years). Eventually, you introduce dairy (also in stages), but the GAPS diet does remain gluten- and soy free. The staples of the diet are organic/unprocessed meats and broth, lots of fats, soup, cooked vegetables, eggs, naturally probiotic foods (like sauerkraut), and NO grains, starches, or sugar. After the couple of years on full GAPS, the gut should be healed and you can start coming off of the diet and eating other foods (while still eating healthy and making good choices). Basically, it is not a life sentence and has as its primary goal healing of the gut/digestive system so that all foods can again be tolerated.
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Saturday, January 14, 2012
Sunday, October 30, 2011
Thursday, April 07, 2011
Who knew?
Talking to a fellow GFCFSF mom while on the women's retreat, I found out something I had never known: eggs contain soy. Nearly all chickens are fed a heavily soy-based diet, and it is present in their eggs, especially the yolk. How incredibly annoying! I was comforted a bit when I thought about how much egg Nate eats: not that much. I use 4 egg whites in his pancake mix--but that isn't bad since the soy is present in the yolks. He doesn't eat much straight/plain egg. Levi, on the other hand, eats a soft-boiled egg nearly every morning at breakfast (I was determined to get him to like them!).
I did some searching online and found some soy-free eggs, and the price is about the same as the soy-free eggs at Whole Foods (i.e., quite expensive). I might end up ordering my eggs online if I can't keep up with making it up to Whole Foods often enough (it isn't very close and is kind of a hassle to get to). I sure wish we lived somewhere where I could keep my own egg-producing chickens like Hallie!
I did some searching online and found some soy-free eggs, and the price is about the same as the soy-free eggs at Whole Foods (i.e., quite expensive). I might end up ordering my eggs online if I can't keep up with making it up to Whole Foods often enough (it isn't very close and is kind of a hassle to get to). I sure wish we lived somewhere where I could keep my own egg-producing chickens like Hallie!
Monday, December 27, 2010
GFCFSF microwave popcorn
We do stovetop popcorn using kernels all the time. But Jon found this Orville Redenbacher's Natural microwave popcorn that the boys can have. (Other microwave popcorns always have milk ingredients.) And it is GOOD! Now I have an easy send-to-school snack for Nate on class party days.
Thursday, July 08, 2010
Great info for parents suspecting autism
I was pointed to this blog post with some great information for parents on what to look for regarding "normal development" of babies.
Here's a pertinent excerpt:
Here's a pertinent excerpt:
Baby B.L.I.S.S.*
For our purposes, I have developed an easy way to remember the signs to look for as your young child is developing. When making a diagnosis, my colleagues and I focus on a baby being able to do several early developmental skills around social interactions and play. I have also created some short video clips showing these skills as they begin to develop. The video shows what your baby should be doing by their first birthday for each part of the acronym: B.L.I.S.S.
B = Babbling- your baby should be playing with vocal sounds a lot, making a variety of vowel and first consonant sounds such as b, d, and m – think mama, dada, baba, etc.
L = Looking – this involves your baby looking at you when you talk, looking back at you when they are playing to “check in”, and looking at something you point to, to see what it is.
I= Imitating – your baby should imitate your basic play actions such as clapping hands, waving bye-bye, blowing kisses, or banging blocks together, etc.
S= Sharing – your baby should share enjoyment with you by laughing and giggling for familiar games such as peak-a-boo, or “Sooo big”.
S = Showing – your baby should hold objects up to you to “show” them to you. They often won’t let go of the item, but they want to get your interest in what is interesting them. If they are walking, they may “bring” it to you to show you.
So this is the new kind of baby B.L.I.S.S. I hope every parent becomes aware of and I want you to remember it for yourselves and for all of your friends. Remember, if your friends or family have concerns, by just starting with these questions, you will know almost immediately if you should have an autism specialist take a look. It is important to note, this is by no means a diagnosis, it is just a way to be aware of the early signs so that if this is what it is, the correct course of action can be taken and a diagnostic assessment can be done as soon and as early as possible.
Wednesday, December 23, 2009
Rimland Center
We took Nate this morning to his DAN! doctor (Dr. Mumper at the Rimland Center), and it was great. We talked about some lingering issues (possible seasonal allergies we will try treating with Claritin), some supplements to add (including zinc, which may also help with diet self-limiting), and even perhaps a meeting or two with their feeding therapist, who could teach Nate to swallow pills and try new foods. Dr. Mumper said she was going to stop classifying Nate as on the autism spectrum and instead put "former ASD" on the top of his chart. So cool! We also talked with the doctor about Levi, because he has some slight delays and some similar issues to Nate at this age (poor sleeping/naps, digestive issues). She recommended a few things and also suggested we try the GFCFSF diet. I'm open to trying, though it definitely means more work!
All in all, it was a great appointment.
All in all, it was a great appointment.
Thursday, April 16, 2009
Gluten-free getting easier
Some cool news: Kix, Rice Chex, (and possibly some other General Mills cereals) have been reformulated and are now GFCFSF! If you look at the old Kix ingredients, you can see they had gluten (whole grain oats), but they don't anymore. Jon called the manufacturer and also confirmed the cereals are made in a dedicated facility, which means nothing else with gluten is made there. This means more things are available for GFCFSF dieters at the regular grocery store, and they cost less than the specialty cereals we usually have to buy.
Friday, March 27, 2009
Nate's neuro appointment today
The appointment today went very well! I went in with expectations on the low side since I'm not extremely impressed with this doctor's view of biomedical treatments or with how much she talks (a ton). (This isn't the actual neurologist but the nurse practitioner, Teri, who follows all of the neurologist's original diagnosis patients.) She spent some time talking with us and observing Nate. Although she didn't officially redo the CARS test (bummer), she did have some great things to say about Nate.- She thinks he would be OK placed in a "regular" preschool.
- She says she can just "hear" autism when a child with autism speaks--something in the inflection, the stilted meter, the way the child speaks; she can't hear it in Nate. She used the words "best I've ever heard" about Nate's language.
- When I asked specifically if it would be beneficial for us to have an updated CARS test on Nate, she said no. Then she said, "If I did the test again on him now, there is a high likelihood he would not place on the autism spectrum at all. Perhaps I could find some tiny thing here or there to put him on the spectrum, but I really don't think so." This was awesome! So although we didn't get a new CARS number, we essentially got the neurologist nurse practitioner to say that Nate probably wouldn't qualify for a diagnosis.
The subject of one-to-one aides also came up, when I said I thought maybe the school could place Nate in a "regular" preschool class this next year with an aide. Teri gave us her opinion of aides in general (a negative one), which was good to hear. Perhaps I don't want an aide for Nate. Teri's opinion was that parents use aides as a crutch in order not to let their children possibly fail or flounder on their own; in addition, aides aren't properly trained.
All in all, the NP was very impressed with Nate and his progress. She also had some nice things to say to/about us as parents and how we interact with him. I left the appointment feeling energized, excited, and proud of our awesome little boy!
Thursday, April 24, 2008
Full IEP report
Is it really Thursday already? I meant to write an update yesterday about the IEP meeting, but I spent all of my computer time listening to our recording of the meeting and writing detailed notes. I'm going to send those notes to the school district so they can include them on the IEP as an addendum.
The meeting and all in attendance were very pleasant. Afterwards, I wished I would have been a little stronger in resisting their putting Nate in the IBI tutoring, but I realized too that he probably still will do well in there, and if he doesn't, we can call another meeting.
Here are just some of my notes (with additional comments in grey). This is long, and it isn't even everything!
- We went over the few minor changes necessary in the assessments (just factual).
- Next, we went over the proposed goals:
- Occupational therapy (vestibular, grasping/drawing, tactile)
Will use gluten-free products - Speech/language
Answering a variety of “wh” questions/functional language
I asked about a goal for reducing Nate’s echolalia. The SLP said they usually don’t write a specific goal for that--usually it’s an elimination process because the child is comprehending more, and the echolalia decreases on its own. - Cognitive skills and pre-academic
The psychologist noted that these skills are on par for Nate’s age expectancy; she wrote goals to keep him moving along. - Adaptive physical education
Nate doesn't qualify for individual services for APE, but we included two related goals--using the pedals on a tricycle and learning playground games like red light green light. - Social goals (initiating play, increase play repertoire)
- Other goal parents brought up but that was not included:
Self-monitoring of his special diet. Psychologist and speech and language pathologist noted it was particularly difficult to write any sort of goal for this, especially because there aren’t any natural opportunities for choosing different foods at school besides what the child brings.
- Offer of program and parent response
- Special day class 8:30-10:45 five days/week
- IBI tutoring 10:45-1:30 five days/week
I noted that the we loved the SDC—the kids were talking to each other, interacting (things Nate needs to work on), and we liked the teacher. I noted that the IBI setting did not seem this way. The kids were not interacting, and there were many more apparent behaviors. I asked, “How is he going to work on talking with other kids if the other kids don’t talk?” The district preschool program specialist answered that the SDC feels natural, much like a typical preschool; she said the IBI clinic feels more sterile and is run a little differently—it’s highly structured and they’re really focusing on goals and objectives. She said that, because it is structured with so much adult support, kids really are able to make progress toward goals, especially abstract, social skills. (Hmmm, did this really answer my question? No!)
She continued by saying that IBI is an autism-specific class, so the kids in there do have language delays and difficulty with socialization. (She was saying this means they really do focus on the language and socialization in there, but in my mind I'm thinking, "Exactly! They have problems with those things! So how will Nate be able to interact with them?")
The psychologist noted that the IBI tutoring we observed was the 4-year-olds class, but that the 3-year-olds IBI tutoring class has a "different ambience." I asked, then, if Nate were to meet this year’s goals, would he not be in the 4-year-old IBI? She answered that most kids do continue in the IBI—just his goals would be changing. (Another answer I didn't like. If she was confirming that I shouldn't have been comfortable with how bad the 4-year-old IBI looked, then why would it be good for Nate to be in there when he is 4?)
The psych mentioned the mock Kindergarten program and other opportunities for inclusion and socialization/peer interaction for when kids turn 4. I asked would Nate be able to be in that mock K if he accomplishes these goals, or would we need to add more goals in order for him to be in the mock K? The psych answered that that is the goal; the SLP confirmed it is what we would anticipate, and the psych said that he is on target toward it. Jon and I noted that the mock K is what we want to shoot for.
I said that our main concern with Nate and the IBI is that his trouble is interacting not with other children with autism but interacting with typical peers, so we are hoping for as much exposure as possible to those typical peers that is appropriate. This is the area we see him struggling the most. The SLP responded that the theory is to teach them in the smaller group so he can gain the skills, even if it’s rote, and he can generalize to the special day class. More practice, less intensive teaching. (Overall, I am not happy with their responses to my questions about typical peer exposure, since they just talked around the issue and didn't really address our concerns.) - Group speech 15 minutes/week (this is basically nothing)
- Occupational therapy direct service 30 minutes/week
- Occupational therapy group 2x/month (with class)
- We talked about a transition plan; Nate will go at least the first few days (or week, or as long as I think it's needed) from 8:30-12:00 instead of all the way to 1:30. This means he'll be in the special day class until 10:45, then do lunch with the IBI class, then do recess, which ends at 12:00.
- We also discussed extended school year. Nate will attend the summer program, which ends July 25, but he will not have services in August. I pushed on this one for a while, but the only group-type program they have in August is for severely impaired children, so that wouldn't work for Nate.
Once I turn in our signed IEP and the registration packet, Nate will be starting next Friday, May 2!
Saturday, April 19, 2008
Diet update
I was just reading through old posts and found the one about starting Nate on the GFCF diet. I wrote about how he had a meltdown when everyone else had pizza and he couldn't have any. That got me thinking about how extremely well he is doing with the diet now but that I haven't written about it here. When Nate wants to eat something in particular, but I say, "I'm sorry, but you can't have that. It has gluten [and/or casein] in it," he now responds by saying, "Gluten casein hurt the tummy." Then he moves on, not begging for the food or getting upset that he can't have it. If we are out and Lucy has pizza, he simply points out that it is Lucy's pizza, but he doesn't ask for any. He is starting to recognize which common items, like breads, crackers, and cookies, have gluten. It is so nice that he has become so compliant and go-with-the-flow in this area. I think part of it is that all the gluten and casein (and soy) are out of his system, so 1) his body doesn't have those addictions anymore and 2) he forgets what the foods taste like (and that he loved them so much).
This diet has been the best change we could have made for Nate.
This diet has been the best change we could have made for Nate.
Monday, March 03, 2008
Law day
The all-day seminar I went to on Saturday for special education law was really informative, interesting, and jam-packed with stuff I'm putting to use right away. I'm writing a more descriptive post about it on my autism blog, but some of the main points I walked away with are
- don't let the school district try to fit Nate into one of their existing programs. He is to have an individualized program that is most appropriate for him.
- keep everything in writing. If I do make a phone call, follow it up with an e-mail detailing all agreements, so I have record of them.
- tape record the IEP meeting (and give written notice first).
- have the district explain everything. If it's written Nate will have an hour of speech, then with whom? One on one? In a group? If in a group, how many other children? And what types of abilities will those other children have? etc.
- think beyond what is currently available at the school.
- get independent assessments for Nate if possible.
- remember: in these proceedings, my goal is the successful and appropriate education of my child.
Yesterday (Sunday), I wrote an e-mail to our district's special ed director, explaining how we had Nate's transition meeting over 3 weeks ago but have yet to hear anything about his assessments or IEP, etc., and I had a message first thing this morning from the district with dates for his assessments. Sometimes it just takes a little prodding, I guess.
On my autism blog, I'll also detail some of the actual law (IDEA) we went over.
Monday, February 18, 2008
New autism blog
I've set up a new public blog where I'm going to repost all of my autism-related stuff. I'll still post everything here, too, but now this public blog can be a place I point people to when they ask about what we've done for Nate. (I'm finding that sending invitations to our family blog is cumbersome.) I'm letting you know so you can tell friends too if you find the need! :)
My autism blog (treatingautism.wordpress.com)
My autism blog (treatingautism.wordpress.com)
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.
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 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! :)
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.
Tuesday, November 27, 2007
Starting the diet
Yesterday I went to Mother's Market and bought lots of gluten-free/casein-free-friendly items, like gluten-free (GF) all purpose baking mix, white rice flour, GF cereal, and casein-free (CF) vanilla rice milk. Today was Nate's first full GFCF day. It went well until tonight, when we were over at Ray and Colleen's (I bring the children over there and Colleen watches them while I teach my flute lessons) and everyone else had pizza (pretty much Nate's favorite food). Poor Nate didn't understand why I wouldn't let him have any; instead he had a GFCF waffle, baby food fruit (he still eats these), and popcorn. He got over the pizza thing once we put it away and everyone was done.
It's interesting that he has been asking for cookies and crackers all day and then rrrreally wanted the pizza tonight. That seems to confirm the idea that his body is addicted to those things.
We will continue doing the enzymes with Nate, but since we'll be doing the diet too, I won't have to be so strict about enzymes with every bite he eats. I'm wondering if it might also work the other way around--that I might not have to be so strict with the diet since he's using enzymes. I'll have to ask about that.
Here are some sites I've found helpful in this very new venture:
Information on flour alternatives - what each kind of flour is good for, substitutes to use for gluten (which is needed to make foods stay together and have a good texture)
Recipes and meal planning ideas - the chicken fingers look good.
Yummy cookie recipe - this blog has several good-looking recipes, many GFCF.
I'll add more as I find them. :)
12/3/07 Wow, this girl has a lot of great information (includes casein-free too):
Cooking & Baking Gluten-Free: Tips from a Gluten-Free Goddess
It's interesting that he has been asking for cookies and crackers all day and then rrrreally wanted the pizza tonight. That seems to confirm the idea that his body is addicted to those things.
We will continue doing the enzymes with Nate, but since we'll be doing the diet too, I won't have to be so strict about enzymes with every bite he eats. I'm wondering if it might also work the other way around--that I might not have to be so strict with the diet since he's using enzymes. I'll have to ask about that.
Here are some sites I've found helpful in this very new venture:
Information on flour alternatives - what each kind of flour is good for, substitutes to use for gluten (which is needed to make foods stay together and have a good texture)
Recipes and meal planning ideas - the chicken fingers look good.
Yummy cookie recipe - this blog has several good-looking recipes, many GFCF.
I'll add more as I find them. :)
12/3/07 Wow, this girl has a lot of great information (includes casein-free too):
Cooking & Baking Gluten-Free: Tips from a Gluten-Free Goddess
Wednesday, November 21, 2007
Intro to treating autism
I'm no longer feeling overwhelmed by all the information out there on treating autism. But I remember what it was like starting out with Nate, feeling like there was so much to learn but nowhere to start. Here is my primer on treating autism, including books I've read and treatments we've tried. (I'm writing this as much for myself as for anyone else; I like to get all these thoughts down in writing but also want a place to point people to if they come to me asking about the things we've done for Nate. I am definitely NOT an expert on this subject, but I've been learning a lot through research and through friends and acquaintances who have been through it too.)
First, autism is treatable. It isn't just a brain thing. Mainstream/traditional treatments like behavioral therapy are really helpful and should be pursued. Alternative/biomedical treatments are also effective and should be vigorously pursued... as early as possible.
What are the treatments?
Mainstream - Many children with autism are put in behavioral therapy, like ABA (applied behavioral analysis). ABA is a play-based therapy where they work on social skills, eye contact, appropriate play with toys, imaginary play, whatever the child needs help with. Children may also be placed in occupational (for self-care skills, eating, oral motor movement, sensory issues), speech, and physical therapies.
"Alternative" - This is where the list of possibilities seems to go on and on. I use quotation marks because pediatricians and other doctors are often ill informed and don't know about or believe in these treatments, so they would think of them as alternative; however, they are working for many, many children. Because autism is tied up in many systems in the body, not just the brain, it seems logical to treat all of the affected areas, especially the ones that seem to start the chains of symptoms that lead to the ones in the brain. Many parents see results when they put their children on a special diet (like gluten-free/casein-free).* This is because children with autism don't seem to process certain foods correctly, and parts of those foods end up acting like drugs, attaching to the opioid receptors in the brain and thereby altering behavior (among other things). Along these same lines, enzymes can be used (alone or in addition to diet). Here is my post on enzymes. Also, since their bodies often don't process nutrients correctly, these children may benefit from various (and many) supplements. The first book I list in the books section has lots of information on helpful supplements, what they do, and why they are needed. Some other biomedical treatments include hyperbaric oxygen, treating for yeast overgrowth (Candida), chelation/toxin removal, and methylation (which has shown to help over 90% of patients with autism in some way! See here, here, or here).
Books
Changing the Course of Autism: A Scientific Approach for Parents and Physicians - This book changed the way I understand autism. I had read bits and pieces in other books about autism being more than just a brain thing, but Jepson's book fully lays it out. The first half is very technical and very informative, explaining what goes on inside the bodies of children with autism. He cites many, many studies and explains them in good detail. The second half spells out biomedical treatments to try. Jepson doesn't give specific dosing information, because most of the things should be under a doctor's supervision. I like that this book presents the "why" and not just the "what" for treatment.
Children with Starving Brains - Written by the grandparent of a child with autism and the founder of Autism Speaks, this book is written along similar lines as Changing the Course of Autism but is a bit more practical. I still haven't finished this book (am only 1/3 of the way through), but it is on many recommended readings lists.
Enzymes for Autism and other Neurological Conditions - This book is not particularly well written, but it details using digestive enzymes in a very practical manner. DeFelice details what enzymes are, how they work in the digestive system, how to start using them, what to expect when starting, the myriad benefits of using them, etc. It is also from this book that I found out why and how to use magnesium (in the form of epsom salt lotion).
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life - This book is written from a strictly behavioral treatment standpoint. It explains some good philosophies for how to interact with children with autism, encourage them to use language, steer them away from stims, etc. However, it was sort of depressing for me to read: I read this book early on--before Nate was talking at all, and so many of the strategies were for children who were already talking. Overall, I wouldn't say someone should read only this book, but instead read this book in addition to some of the biomedical treatment books. This can help provide a broader, comprehensive treatment picture.
Steps to take
If your child is diagnosed with autism (or you suspect it), here is what I recommend you do:
- Get a regional center/state services evaluation. Here is the Orange County CA reg center website. This will start the process of getting traditional therapy for your child through the state.
- Attend your child's therapy and learn to interact with him/her the same way the therapists do so you can continue the learning at home.
- Look into changing diet and/or adding enzymes gradually; pay attention to your child's behavior and see if you can tell a difference. (Remember to wait out the adjustment period.)
- Find a DAN! doctor. Many successful biomedical treatments (like supplementation or chelation) should be attempted under a doctor's supervision.
- Read, read, read!
- Have someone to talk to--it doesn't have to be someone who has a child with autism, but at least someone who can sympathize, lend a listening ear, and encourage.
- Remember that your child is still your precious, unique child!
Websites
Talk About Curing Autism - This Southern California-based organization's website has lots of resources for parents, including help with special diets, vaccine recommendations, support meetings, and more.
Autism Research Institute - Home of Defeat Autism Now! (DAN!), the ARI website also has many resources, including an overview and myths about autism, a recommended reading list, a video "My Child Was Just Diagnosed With Autism -- What Do I Do Tomorrow?" (under "First Steps"), and the official list of DAN! doctors.
GFCF Diet - Help with starting the gluten-free/casein-free diet.
Kirkman Labs - Supplier of many supplements, enzymes, and other products many parents use.
Houston Nutraceuticals - Where we get Nate's current enzymes, Peptizyde and Zyme Prime.
Enzymes & Autism Yahoo Group - Forum where you can ask questions about enzymes and other biomedical treatments.
Autism Speaks - Contains current news, videos, and research information.
* We still haven't put Nate on a special diet, but in anticipation of being asked to do it when we take Nate to the Rimland Center next month, I have removed straight milk. He hasn't seemed to miss it. Next will be yogurt. It will be hard to get rid of cheese since Nate has a quesadilla at least 6 times per week.
First, autism is treatable. It isn't just a brain thing. Mainstream/traditional treatments like behavioral therapy are really helpful and should be pursued. Alternative/biomedical treatments are also effective and should be vigorously pursued... as early as possible.
What are the treatments?
Mainstream - Many children with autism are put in behavioral therapy, like ABA (applied behavioral analysis). ABA is a play-based therapy where they work on social skills, eye contact, appropriate play with toys, imaginary play, whatever the child needs help with. Children may also be placed in occupational (for self-care skills, eating, oral motor movement, sensory issues), speech, and physical therapies.
"Alternative" - This is where the list of possibilities seems to go on and on. I use quotation marks because pediatricians and other doctors are often ill informed and don't know about or believe in these treatments, so they would think of them as alternative; however, they are working for many, many children. Because autism is tied up in many systems in the body, not just the brain, it seems logical to treat all of the affected areas, especially the ones that seem to start the chains of symptoms that lead to the ones in the brain. Many parents see results when they put their children on a special diet (like gluten-free/casein-free).* This is because children with autism don't seem to process certain foods correctly, and parts of those foods end up acting like drugs, attaching to the opioid receptors in the brain and thereby altering behavior (among other things). Along these same lines, enzymes can be used (alone or in addition to diet). Here is my post on enzymes. Also, since their bodies often don't process nutrients correctly, these children may benefit from various (and many) supplements. The first book I list in the books section has lots of information on helpful supplements, what they do, and why they are needed. Some other biomedical treatments include hyperbaric oxygen, treating for yeast overgrowth (Candida), chelation/toxin removal, and methylation (which has shown to help over 90% of patients with autism in some way! See here, here, or here).
Books
Changing the Course of Autism: A Scientific Approach for Parents and Physicians - This book changed the way I understand autism. I had read bits and pieces in other books about autism being more than just a brain thing, but Jepson's book fully lays it out. The first half is very technical and very informative, explaining what goes on inside the bodies of children with autism. He cites many, many studies and explains them in good detail. The second half spells out biomedical treatments to try. Jepson doesn't give specific dosing information, because most of the things should be under a doctor's supervision. I like that this book presents the "why" and not just the "what" for treatment.
Children with Starving Brains - Written by the grandparent of a child with autism and the founder of Autism Speaks, this book is written along similar lines as Changing the Course of Autism but is a bit more practical. I still haven't finished this book (am only 1/3 of the way through), but it is on many recommended readings lists.
Enzymes for Autism and other Neurological Conditions - This book is not particularly well written, but it details using digestive enzymes in a very practical manner. DeFelice details what enzymes are, how they work in the digestive system, how to start using them, what to expect when starting, the myriad benefits of using them, etc. It is also from this book that I found out why and how to use magnesium (in the form of epsom salt lotion).
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life - This book is written from a strictly behavioral treatment standpoint. It explains some good philosophies for how to interact with children with autism, encourage them to use language, steer them away from stims, etc. However, it was sort of depressing for me to read: I read this book early on--before Nate was talking at all, and so many of the strategies were for children who were already talking. Overall, I wouldn't say someone should read only this book, but instead read this book in addition to some of the biomedical treatment books. This can help provide a broader, comprehensive treatment picture.
Steps to take
If your child is diagnosed with autism (or you suspect it), here is what I recommend you do:
- Get a regional center/state services evaluation. Here is the Orange County CA reg center website. This will start the process of getting traditional therapy for your child through the state.
- Attend your child's therapy and learn to interact with him/her the same way the therapists do so you can continue the learning at home.
- Look into changing diet and/or adding enzymes gradually; pay attention to your child's behavior and see if you can tell a difference. (Remember to wait out the adjustment period.)
- Find a DAN! doctor. Many successful biomedical treatments (like supplementation or chelation) should be attempted under a doctor's supervision.
- Read, read, read!
- Have someone to talk to--it doesn't have to be someone who has a child with autism, but at least someone who can sympathize, lend a listening ear, and encourage.
- Remember that your child is still your precious, unique child!
Websites
Talk About Curing Autism - This Southern California-based organization's website has lots of resources for parents, including help with special diets, vaccine recommendations, support meetings, and more.
Autism Research Institute - Home of Defeat Autism Now! (DAN!), the ARI website also has many resources, including an overview and myths about autism, a recommended reading list, a video "My Child Was Just Diagnosed With Autism -- What Do I Do Tomorrow?" (under "First Steps"), and the official list of DAN! doctors.
GFCF Diet - Help with starting the gluten-free/casein-free diet.
Kirkman Labs - Supplier of many supplements, enzymes, and other products many parents use.
Houston Nutraceuticals - Where we get Nate's current enzymes, Peptizyde and Zyme Prime.
Enzymes & Autism Yahoo Group - Forum where you can ask questions about enzymes and other biomedical treatments.
Autism Speaks - Contains current news, videos, and research information.
* We still haven't put Nate on a special diet, but in anticipation of being asked to do it when we take Nate to the Rimland Center next month, I have removed straight milk. He hasn't seemed to miss it. Next will be yogurt. It will be hard to get rid of cheese since Nate has a quesadilla at least 6 times per week.
Monday, October 08, 2007
Vaccines: some things I've been learning
There are those in the autism community who believe certain vaccines like the MMR caused their children's autism. I am not one of those. Nate's was not a regressive case, where he was "fine" and then, one day soon after a shot, lost skills, language, etc. Looking back, we can see signs all along in Nate's development. However, I agree with the experts (like in the book I'm currently reading, Changing the Course of Autism: A Scientific Approach for Parents and Physicians) who posit that autism is not merely a genetic disorder, but a disorder perhaps involving some genetic predispositions (in the brain? gut?) that are triggered by environmental factors that affect the gut, brain, and other areas of the body. One of those environmental triggers might be some of the ingredients in vaccines.
Some studies have found that children with autism are unable to process certain metals, like mercury and/or other vaccine ingredients, properly. Their bodies hold onto these materials, sometimes to toxic levels, which can then manifest in "autistic" behaviors. I'm being as careful as possible with Lucy's vaccinations since 1) autism tends to run in families and she may also have those "genetic predispositions" and 2) I've been finding out what's in these vaccines (a lot of junk, including aluminum, formaldehyde, and human tissue!).
Lucy got her first shot, the Hib (prevents Haemophilus influenzae type b bacteria, which causes bacterial meningitis, pneumonia, and other infections) at five months. Babies' immune systems often aren't ready for shots by two months, so we gave Lucy's body more time to develop. I'm getting her vaccinations one at a time (more spread out), so she only gets one shot at each doctor's visit, as opposed to the four or more that is standard protocol*. Also, she won't get the combination shots like the MMR; instead she'll get separate measles, separate mumps, and separate rubella shots. Here's how I plan to do all of her shots (probably not exactly to this schedule, but in this order and not any sooner than the ages listed):
5 months: Hib
6 months: DTaP
7 months: second series of Hib, IPV (Polio)
8 months: DTaP
9 months: third series of Hib, IPV
10 months: DTaP
15 months: measles
17 months: fourth series of Hib, IPV
27 months: rubella
39 months: mumps**
4-5 years: boosters for the measles, rubella, and mumps** shots (if possible, though, you can check for "titers" before giving boosters and may not need to give the boosters at all)
4 years: Hepatitis B
I haven't listed the chicken pox (varicella/varivax) vaccine because I may not get it for the children at all. I may file exemptions for both Nate and Lucy for some shots. Several states, including California, allow parents to file "philosophical exemptions." This way, they can still attend any school. FYI, California's school immunization record form has space on the back for a "personal beliefs" exemption request.
The book I've gotten most of my information from is What Your Doctor May Not Tell You About Children's Vaccinations by Stephanie Cave. I like that the author, a doctor, isn't completely anti-vaccine; she just gives a fuller picture about what's in each vaccine, possible side effects, how best to protect our children, etc.
* More information on why I'm spreading Lucy's vaccinations out and only getting one at a time: "Marcel Kinsbourne, M.D., a pediatric neurologist and research professor at the Center for Cognitive Studies at Tufts University, expressed his concerns about multiple dosing to the House Committee on Government Reform when he was asked to speak on the subject of vaccine safety. Dr. Kinsbourne told his audience that 'when several vaccines are given at the same time, they may have adverse effects that none of the individual vaccines have when they are given by themselves....' In addition to the added assault on the immune system when more than one vaccine is given, injecting several vaccines makes it virtually impossible to know which one is responsible for any adverse reactions that may occur" (Cave, 2001, pp. 33-34).
** I keep thinking of more stuff to add! Lucy might not get the mumps shots at all. The major threat of the mumps disease is male sterility. (In addition, the rubella disease is rather mild except in cases where a pregnant woman contracts it; it can kill the baby. So girls don't need the mumps vaccine as much as boys do, and boys don't need the rubella vaccine as much as girls do.)
Edited to add: The book I'm currently reading presents evidence that the main issue with the MMR is the measles portion, and even separated out, the measles vaccine has caused problems.
Update January 2008: I have since decided not to get any vaccinations for Lucy. She has gotten the Hib (once at 5 months and once at 9 months), so I will probably get the other two rounds of that shot for her, but nothing else right now.
Some studies have found that children with autism are unable to process certain metals, like mercury and/or other vaccine ingredients, properly. Their bodies hold onto these materials, sometimes to toxic levels, which can then manifest in "autistic" behaviors. I'm being as careful as possible with Lucy's vaccinations since 1) autism tends to run in families and she may also have those "genetic predispositions" and 2) I've been finding out what's in these vaccines (a lot of junk, including aluminum, formaldehyde, and human tissue!).
Lucy got her first shot, the Hib (prevents Haemophilus influenzae type b bacteria, which causes bacterial meningitis, pneumonia, and other infections) at five months. Babies' immune systems often aren't ready for shots by two months, so we gave Lucy's body more time to develop. I'm getting her vaccinations one at a time (more spread out), so she only gets one shot at each doctor's visit, as opposed to the four or more that is standard protocol*. Also, she won't get the combination shots like the MMR; instead she'll get separate measles, separate mumps, and separate rubella shots. Here's how I plan to do all of her shots (probably not exactly to this schedule, but in this order and not any sooner than the ages listed):
5 months: Hib
6 months: DTaP
7 months: second series of Hib, IPV (Polio)
8 months: DTaP
9 months: third series of Hib, IPV
10 months: DTaP
15 months: measles
17 months: fourth series of Hib, IPV
27 months: rubella
39 months: mumps**
4-5 years: boosters for the measles, rubella, and mumps** shots (if possible, though, you can check for "titers" before giving boosters and may not need to give the boosters at all)
4 years: Hepatitis B
I haven't listed the chicken pox (varicella/varivax) vaccine because I may not get it for the children at all. I may file exemptions for both Nate and Lucy for some shots. Several states, including California, allow parents to file "philosophical exemptions." This way, they can still attend any school. FYI, California's school immunization record form has space on the back for a "personal beliefs" exemption request.
The book I've gotten most of my information from is What Your Doctor May Not Tell You About Children's Vaccinations by Stephanie Cave. I like that the author, a doctor, isn't completely anti-vaccine; she just gives a fuller picture about what's in each vaccine, possible side effects, how best to protect our children, etc.
* More information on why I'm spreading Lucy's vaccinations out and only getting one at a time: "Marcel Kinsbourne, M.D., a pediatric neurologist and research professor at the Center for Cognitive Studies at Tufts University, expressed his concerns about multiple dosing to the House Committee on Government Reform when he was asked to speak on the subject of vaccine safety. Dr. Kinsbourne told his audience that 'when several vaccines are given at the same time, they may have adverse effects that none of the individual vaccines have when they are given by themselves....' In addition to the added assault on the immune system when more than one vaccine is given, injecting several vaccines makes it virtually impossible to know which one is responsible for any adverse reactions that may occur" (Cave, 2001, pp. 33-34).
** I keep thinking of more stuff to add! Lucy might not get the mumps shots at all. The major threat of the mumps disease is male sterility. (In addition, the rubella disease is rather mild except in cases where a pregnant woman contracts it; it can kill the baby. So girls don't need the mumps vaccine as much as boys do, and boys don't need the rubella vaccine as much as girls do.)
Edited to add: The book I'm currently reading presents evidence that the main issue with the MMR is the measles portion, and even separated out, the measles vaccine has caused problems.
Update January 2008: I have since decided not to get any vaccinations for Lucy. She has gotten the Hib (once at 5 months and once at 9 months), so I will probably get the other two rounds of that shot for her, but nothing else right now.
Thursday, July 26, 2007
Questions I've been pondering
Where is the balance between helping Nate to be "normal" and accepting him for who he is? I am glad he is getting so many kinds of therapy and seems to be doing well with it. But is there a point where we are pushing him too much, not allowing him to be his own person?
No parent wants to hear their child has something "wrong." We want our children's lives to be easy, happy, so when we hear they have a condition that means things will be more difficult for them, it's heartbreaking. But do I really know what's going to make Nate happy when he's older, or am I projecting what I would want for him (to have friends, to do well in school, to speak eloquently, to get married and have children)?
Estee Klar-Wolfond, a mother of a child with autism and an activist, writes,
I guess what I really need to keep my focus on is fostering Nate's spiritual growth. I want him to become a believer in Christ, and I want him to be happy, however that happens. I want him to know we love him no matter what, that we enjoy his personality and want him to pursue his interests.
No parent wants to hear their child has something "wrong." We want our children's lives to be easy, happy, so when we hear they have a condition that means things will be more difficult for them, it's heartbreaking. But do I really know what's going to make Nate happy when he's older, or am I projecting what I would want for him (to have friends, to do well in school, to speak eloquently, to get married and have children)?
Estee Klar-Wolfond, a mother of a child with autism and an activist, writes,
I don't necessarily agree completely with the author (e.g., "self image" and self esteem often encourage us to look inside ourselves for our identity, when really our identity is in Christ), but she did make me think. I don't want Nate to think we believe there's something wrong with who he is. He does need therapy, because we want him to be able to communicate effectively and function in the world. But beyond his learning to talk and at least identify (if not understand) social mores, I don't want to push him too much. (But what is too much? I don't want to waste his most formative years when therapy and behavior "modification" and discipline and proactive parenting have the most impact! I don't want to say, "Nate is just going to be this way," just because it's easier not to take action. As you can see, I haven't worked this all out in my head, which is why this post is titled, "Questions.")We do not hear about research that seeks to help autistic people be the best autistic people they can be. We need to redirect our attention to merging help (with the more disabling aspects of autism) with respect (respecting the autistic person’s right to exist) and realize that there is life beyond an over-simplified “cure.” Further, helping the more disabling aspects of autism (anxiety, sensory issues) can exist outside of a "cure" for autism.
I urge every parent (but for those who visit this blog, I bet I’m preaching to the choir), to actively seek out the alternatives and become proactive in not accepting strategies that change your child to “appear normal” because they will ultimately be very damaging to their self-image as teenagers and adults, and we will have greater problems to contend with later.
I guess what I really need to keep my focus on is fostering Nate's spiritual growth. I want him to become a believer in Christ, and I want him to be happy, however that happens. I want him to know we love him no matter what, that we enjoy his personality and want him to pursue his interests.
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