Temple Grandin interview Tuesday, Feb 2 2010 

My thoughts and Vaccines , , , , , editorkatie 10:07 am

I read an interview with Temple Grandin, the noted author who has autism, here. To my knowledge, Grandin has not been an advocate for any of the “new” autism groups like Autism Speaks or TACA, groups that support biomedical treatments and research for a cure. That is why some of her answers pleasantly surprised me:

Cases of autism are rising. Why do you think that is?
Some of it is probably due to the way autism is diagnosed. I saw people on the HBO lot that probably have Asperger’s but never got a diagnosis as a child. There has been an increase in regressive autism, children who develop normally, have speech, and then lose it. I think there’s something going on with some type of environmental contaminant. Some insult is getting to the child whose genes are susceptible to autism. I think we are going to be hearing more about epigenetics and autism. With epigenetics you look at how the genome responds to the environment. How things like toxins and diet and other things turn on the switches that regulate how certain genes are expressed.

I’ve read this a few other places, and it resonates with me. Perhaps there is no one “cause” for autism, and something that contributes to causing autism for one child (e.g., vaccines) might not harm a neurotypical child at all, because that neurotypical child’s body isn’t susceptible or predisposed in the first place.

I was also pleased to read that Grandin mentioned toxins and diet. From our family’s experience, we know that diet makes a huge difference–not just for Nate, but for all of us!

“Autism pride” or neurodiversity is a growing movement. Do you think there needs to be a “cure” for autism?
I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’

I agree that not every minute autistic trait should be erased. Any “autism” still left in Nate is at the “quirky personality trait” level, and I wouldn’t change those traits. (I am instead trying to help Nate learn how best to deal with some of the quirks, like when he gets super upset if he doesn’t win a board game.) For children whose autism is more severe, I believe in embracing the child and working to help that child be able to function in society through language, understanding social cues, and improving what’s going on inside the body to heal what might be hurting.

 

2010 Update Tuesday, Jan 26 2010 

My thoughts and Nate's experience editorkatie 8:00 pm

Nate is now 4-and-a-half years old, and as of his latest appointment with his DAN! doctor, in December 2009, we now consider him officially recovered! Even his skeptical-of-alternative-treatments neurologist admitted back in March that, if they were to redo the CARS test on him, “there is a high likelihood he would not place on the autism spectrum at all.”

Sometimes I take for granted how far Nate has come. Here’s a glimpse:

Then (2.5 years old, before the diet and most other interventions)

Now (4.5 years old)
Nonverbal, just a few signs (“more,” “all done,” “please”) Extremely verbal up to and beyond peer level. Neurologist, who says she can just “hear” autism when a child with autism speaks–something in the inflection, the stilted meter, the way the child speaks, proclaimed she can’t hear it in Nate. She used the words “best I’ve ever heard” about Nate’s language.
Meltdown or tantrum if made to stop a desired activity Much more go with the flow and “roll with the punches.” Still enjoys routine and being “in charge” and self-directing activities, but no rigid adherence. Can be reasoned with.
If he wanted something, he would just go and wait at the object instead of communicating (e.g., if he wanted something to drink, he would go stand by the refrigerator) When Nate wants something he can’t get himself, he comes and asks (e.g., “Hi Mama, may I please have some juice? I’ll get the cup.”)
Up several times crying at night; awake early (5:00 to 6:00) each morning Bed time at 8:00 p.m. with night waking very rare (perhaps once a week). Sleeps until at least 5:30 a.m. but stays in bed until 6:00 or later.
Desire to play with peers but no understanding of how to play with them (e.g., he liked to play chase, so he would go up to a peer, stare at him/her, then run away hoping he/she would chase him) Nate has no problem interacting with peers, and his way of playing is indistinguishable as “different.” While he doesn’t ask many questions about others or wonder about their feelings often, he is polite and loves to play.
Diet consisted of quesadillas, pizza, yogurt, cheese, chicken nuggets, fries, bananas, waffles, and baby food fruits—basically, LOTS of gluten, casein, and soy. Diet is not extremely varied, but it is free of all gluten, casein, and soy. A typical week for Nate includes pancakes for breakfast (GFCFSF mix made with extra nutritious goodies mixed in), banana, dry cereal, fruit leathers, hamburger patty, GFCFSF bread, peanut butter, bacon, blueberries, and small bites of whatever GFCFSF thing I make for dinner.

 

We are so thankful for Nate’s success. We believe the following interventions have been most successful, with God’s help.

  • The GFCFSF diet. Whenever we wondered whether this difficult-to-follow diet was really working, Nate would accidentally get gluten (or casein or soy) somehow, like accidentally being given food with an unknown ingredient or being given the wrong snack in class at church. And then we would pay the price in his behavior for a day or two: prolonged meltdowns over the slightest thing (a parent saying he can have juice in just a minute), uncharacteristic whining, crying.
  • Consistency between therapy and home. We started using the same language and prompts the therapists did with Nate, requiring he communicate to the best of his ability instead of just giving in to his tantrums or meltdowns.
  • mB12 shots. While these didn’t provide a huge jump in skills for Nate like they have for others, we did notice they help him accept changes in routine better. They make it easier for him to go with the flow, to order his world. (We noticed this when we did a challenge/re-challenge where we stopped the shots for several weeks, then reintroduced them and watched for changes.)
  • The guidance of our DAN! doctor, who helped put together the right combination of supplements and vitamins for Nate.

Nate will enter kindergarten in Fall 2010, and we anticipate he’ll be recommended for full inclusion in a general education setting. We are so proud and excited. :)

 

Telling Nate Monday, Oct 26 2009 

My thoughts and Nate's experience editorkatie 8:06 pm

Recently, Nate came with me to run a couple of errands, and we stopped first at Starbucks. While I drank my coffee and Nate drank his apple juice, I asked, “You’ve heard how sometimes I say that you have autism?”

“Yes,” he replied.

I asked, “Do you know what that means?”

“Yes!” he said. “Well, no. I don’t.”

“It means there are extra special things about your brain,” I explained. “You know how you’re really good at some things? Like you can read? I don’t know any other 4 year olds who can read like you can. And what else are you really good at?”

“Playing games!” he chimed in. “And playing cards!”

“Yes!” I agreed. “And you can remember things really well–you have a great memory. And you are so smart.”

“Yes, I am,” he beamed.

“Those are some of the extra special things about your brain. And of course, there are things that are harder for you, too. Like you know how you have a hard time letting others go first?”

“Oh yeah,” he dismissed, already thinking of changing the subject.

“Well, that’s what autism means for you. You just have extra special things about your brain. Cool, huh?”

“Yeah! Cool!” he replied.

And then we were on to a new subject, and that was that.

 

Gluten-free getting easier Friday, Jun 26 2009 

GFCF & enzymes editorkatie 4:22 pm

Some cool news: Kix, Rice Chex (and some other General Mills cereals including Corn Chex) have been reformulated and are now GFCFSF! The old Kix 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.

 

2009 Update Friday, Mar 13 2009 

GFCF & enzymes and My thoughts and Nate's experience , , , , , , , editorkatie 11:27 am

Nate is such an amazing little boy. He is now more verbal than many of his neurotypical peers. He has been able to read for several months now (self taught). He loves other kids and enthusiastically greets everyone by name (he has an amazing memory, especially with names). He courageously endures all of his treatments, including yucky tasting daily supplements, b12 shots every 3 days, and a restrictive GFCFSF diet. He is so joyful, energetic, smart, and sweet. He has a new little brother, Levi, who is 4 months old now; Nate has been nothing but sweet to him since day one.

We had an appointment with Dr. Mumper at Rimland Center last month. We went through Nate’s current supplement routine, adding a few new elements (magnesium each day to help with his auditory sensitivity/defensiveness; we reinstated cod liver oil to decrease visual stimming/using peripheral vision; we also reinstated probiotics, especially for if/when he goes on antibiotics; glutathione lotion, which has myriad benefits; and a 10-day course of two strong antibiotics to nip some possible clostridia in the bud). Dr. Mumper also recommended we take Nate back to the neurologist who originally diagnosed him two years ago, because she believed Nate would no longer qualify for the diagnosis! I have made an appointment with the neurologist for the end of this month; from what I know of her, she would be very reluctant to remove a diagnosis from a child, but Nate would still score much lower on the CARS test he originally took.  (His score in March 2007 was 43.5, which placed him in the “moderately autistic range.”)

When Dr. Mumper asked us what one treatment we believe has helped Nate the most, Jon and I agreed it is the GFCFSF diet.

Nate’s next IEP is in April. I’m very interested to hear the things his teachers will say about him, since they will have had a year with him. We are optimistic about Nate being mainstreamed by kindergarten (which will be September 2010), as I can already see Nate starting to bring home more negative than positive behaviors from his peers at school. We love this amazing boy!

P.S. After reading some of my older posts, I realized I should also update that Nate is now a good sleeper. He goes to bed at 8:00 (usually plays in his room, but then turns out his light and is in bed by 9:00) and almost always sleeps until 6:00 or a bit later. Waking/needing one of us at night is rare for him now–and it has been for probably 5 or 6 months.

 

One step back, two steps forward Wednesday, Jul 2 2008 

GFCF & enzymes and Nate's experience , , , , , , , , , editorkatie 8:54 am

Jon and I have noticed an interesting trend: when we stop a certain treatment (or all treatments) for Nate for a short period, he has a major regression, but when we start everything back up again, he jumps forward amazingly! (It’s kind of like one step back, two steps forward.) We have never intentionally stopped treatments, but things happen (shipments get delayed or backordered, or a diet infraction occurs, etc.). I can think of two of these events off the top of my head, but I know there have been others:

  1. Way back when we were only doing enzymes (not diet, no other supplements), I ran out of both kinds, and they were backordered on the website I order them from. In in the interim, I went to a local health food store and got some enzymes, but they were not high quality and had such a low concentration of enzymes that it was essentially like giving Nate nothing. In that week, he started whining/fussing/crying all day like he used to and had many more meltdowns and tantrums. At that point, he really didn’t have much language anyway, so he didn’t lose much in that area. When the correct enzymes finally arrived, I started Nate back on them full force. Within a day to two days, he was back to being happy and bright-eyed. And he started saying words, including “hi” and “bye bye” for the first time ever, unprompted.
  2. The second example occurred this past month. Nate got a stomach bug and high fever on Thursday, June 19. He couldn’t keep anything down, so I did not give him any of his vitamins, supplements, or enzymes (total of about eight separate items right now) all of Thursday, Friday, and some of Saturday. Even after his fever broke and he was eating a bit, he was whiny and cried most of the day for no reason, not really using words much of the day. He got many of his vits/supps on Saturday, and I started everything back up on Sunday (including his melatonin). Sunday night, he slept through the night. This is very, very rare. Monday night, he slept through the night. I can’t remember two nights in a row of sleeping through the night in months. Tuesday night, he slept through the night. Wednesday night, he did wake early in the morning and come down to our bed, but he did it quietly (in the past months, when he wakes, it is with loud crying, and Jon has to go get him). So, in the past week of nights, he has slept through the night many nights and only cried one time. That is monumental for him. We are all getting more sleep!

It is encouraging to figure out that the things we’re doing for him are working. His jumps forward might also indicate that he would do well with higher doses of certain things, but I don’t know if our family wallet can manage that right now. :)

 

Our current treatment plan Monday, Jun 30 2008 

Nate's experience , , , editorkatie 10:12 am

Since every child on the spectrum is different, this supplementation plan might only be best for Nate. I’m writing it down for myself to keep track.

 

- Enzymes (we just switched from Zyme Prime and Peptizyde to TriEnza, which contains ZP and Pep in addition to No-Fenol. No-Fenol helps with some fruits and vegetables, and I wanted to add it in because Nate eats a lot of ketchup). With every breakfast and dinner (and would be lunch but I don’t send them to school).

 

- GFCFSF diet (i.e., gluten-free, casein-free, soy-free). Still the best change we have made for Nate.

 

- Methyl-B12 injections (one shot every three days). These are easy to give now. Nate loves his reward (10 Starburst brand jelly beans, which are gfcfsf–Jelly Belly brand isn’t GF).

 

- Dimethylglycine (DMG). Part of methylation. We’ve been using a liquid form from Kirkman, but I’m getting some good-tasting chewables next. With breakfast and dinner and might start sending to school for lunch.

 

- Taurine. Part of methylation. Once a day (breakfast).

 

- CoEnzyme Q10. The ones we’ve gotten taste good, so Nate loves taking these. They help with energy production and (I think) immunity. 2 chewables each at breakfast and dinner.

 

- Multi-vitamin. We’ve been using Kirkman’s basic chewables, but for my next group order (ordering as part of a group gets a discount), I’m going to get a more specialized vitamin.

 

- Probiotics. Nate’s DAN! doc likes Klaire Labs, so I got these. Once a day.

 

- Liquid calcium. To offset the reduction in calcium from the diet. Once a day.

 

- Melatonin. This has been a blessing. We started giving a 1mg “sublingual” (supposed to let it melt in your mouth) to Nate a half hour before bed time after his last DAN! appointment, and we’ve worked up to 3mg (mostly because he loves the taste). This has helped him fall asleep at a much more reasonable time–almost always before 9:00 now, and usually within about a half hour of taking the melatonin. It had gotten to be close to 10:00 many nights, with him still waking during the night and often waking for good at 5:00 or 5:30 a.m.

 

What we’re adding next:

 

- Folinic acid. This is also part of methylation, and I should have added it in already. I always hate the possibility of the hyperactivity side effect! Some of Nate’s sleep problems started when we began all of the supplements with this side effect.

 

- Liquid carnosine. Another hyperactivity possibility, but reports are really positive about the language and social development this supplement seems to foster.

 

- L-carnotine.

 

- Fish oil. We used to give cod liver oil, but I didn’t stick with it. I will probably order some fish oil and cod liver oil this month.

 

 

Autism Free Zone Monday, May 12 2008 

My thoughts , editorkatie 7:31 pm

I’ve signed up for a new website community called Autism Free Zone, where parents can share treatment-related materials they are no longer using with those who now need it and where vendors are giving discounts (first vendor is a GFCF food company that mails meals). This write-up probably doesn’t do the site justice, but I’ve only just joined this week.

 

Easy exemption! Wednesday, Apr 30 2008 

Nate's experience and Vaccines , , , , , , editorkatie 8:03 am

Yesterday, I brought all of Nate’s registration paperwork to his new school. To my surprise, they put up absolutely no fuss about his not having any immunizations after 18 months. I had brought a letter stating the state law that he can’t be denied entrance into the school, but I didn’t have to bring it out; I just signed their exemption request. Woo hoo! He starts this Friday, May 2, the day after his third birthday.

Here are some helpful links I used in the past few weeks:

 

Our first IEP meeting Thursday, Apr 24 2008 

Nate's experience , , , , editorkatie 7:58 am

We had our meeting with the school district on April 22. 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! I decided to include so much detail here, though, in case someone comes across it hoping to find out what their own IEP meeting will look like.

- We went over the few minor changes necessary in the assessments (just factual stuff I found that wasn’t right).

- Next, we went over the proposed goals (which I had asked for and received in advance):

  • 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 I 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.

 

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