2009 Update Friday, Mar 13 2009

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.

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

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.

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Our current treatment plan Monday, Jun 30 2008

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.

 

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Autism Free Zone Monday, May 12 2008

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.

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Easy exemption! Wednesday, Apr 30 2008

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:

• CA immunization exemption information - information about current state statutes, letters, and forms. There is a lot of great stuff here, including newborn/Vitamin K exemptions, etc.
• Sample letter – this is the letter I brought with me to the school but didn’t have to use.
• CA school exemptions information sheet – the CA School Immunization Law lays out pretty clearly that your child can be exempted.
• How to legally avoid unwanted vaccinations by Dr. Mercola – balanced, good information, including exemptions in the military.

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Our first IEP meeting Thursday, Apr 24 2008

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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Diet update Saturday, Apr 19 2008

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.

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Special ed law tips Monday, Mar 3 2008

TACA’s special ed law day was amazing — informative, interesting, and jam-packed with stuff I’m putting to use right away.

I walked away wishing I had known some of this before, as I’ve already broken a few “rules” as far as how best to interact with Regional Center and the school district, but live and learn! I also felt so humbled to be around other parents who have been on this road with their children and done so much. One mom put her son on the GFCF diet just four days after his autism diagnosis and then used an advocate when dealing with the Regional Center to negotiate many more hours of therapy, including in home, than were originally offered. I was nowhere near that up to speed with the research or ready to act that soon after Nate’s diagnosis. It took us several months before even starting enzymes, and I never knew Nate could or should have more hours of therapy. However, I am so thankful for the progress he has made regardless of whether he should or shouldn’t have had more done earlier.

So, back to the law day. There were five sessions with speakers including special ed lawyers, a TACA mom, a Pepperdine law professor (loved him), and a neuropsychologist. Here is some of the most salient information from their talks:

IDEA (federal law)

• Sections to know: 1400, 1401 (definitions), 1412 (least restrictive environment info), 1414, and 1415.
• The IDEA requires education must be provided in the Least Restrictive Environment (LRE), which means maximum exposure to typical peers.
• Education must be individualized and appropriate to the child’s needs; it should not be the school district trying to fit the child into its existing program(s).
• If the program the district offers is inappropriate, the parents have the option to place their child in an appropriate private program and seek reimbursement from the district.  

The IEP meeting

• Go into the meeting with “convicted civility,” not expecting a fight but hoping for cooperation. Making friends with the IEP team is valuable.
• Create a list of items that your child must have as part of his/her IEP — goals you want to be sure are included. 
• Tape record it, making sure to give written notice at least 24 hours in advance.
• Request copies of the assessors’ evaluations in advance, so that you may be familiar with them before the meeting.
• Have the district explain everything. Ask “stupid” questions, forcing them to get specific. If it’s written the child will have an hour of speech, then with whom? What are that person’s qualifications? Will it be 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.
• Talk about goals first, then placement. Looking at a goal, determine how many hours a week of each service would be necessary to meet it, then decide how to place the child.

Independent assessments 

• Get independent assessments for the child if possible. These are expensive, but consider the next points.
• District assessors are looking for how my child is like other children; independent assessors are looking for how my child is unlike other children and what we can do to help fix that.
• District assessors, either consciously or subconsciously, are limited in what they can write, and they already know what resources the district has available; independent evaluators don’t answer to anyone about what they’ve written and make recommendations not based on available resources but based on what the child needs.
• If getting these assessments is not feasible, you may do it later: if you disagree with the district’s assessments, you may request independent assessments at the district’s expense. You are not obligated to use any of the independent evaluators they suggest, but realize, too, that the district will get to see the assessor’s opinions no matter what (whereas if you fund them, you get to see the recommendations first, and you don’t have to share them with the district).

Other tips

• Keep everything in writing. If you do make a phone call, follow it up with an e-mail detailing all agreements, so you have record of them. 
• Be leary any time the district mentions something is its “policy.” It very well might be a district policy, but it might violate law, and federal law always trumps district policy. Know your rights (e.g., you have the right to receive all assessments before the IEP meeting).
• Contact each evaluator individually and ask that he/she include recommendations on the evaluation. Many will balk at this and say it’s up to the IEP team, but keep asking, because the IEP team will only decide based on the expert’s recommendations.
• Protect your child’s privacy by not allowing information sharing.
• You can include dietary requirements (GFCF, no soy, etc.) in the IEP, with a prescription from a doctor (like your DAN! doc). The school is required to provide special food; however, cafeteria workers often don’t know about cross-contamination of foods. I plan on sending GFCF food with Nate every day and including in the IEP that he may only eat food I have provided or approved in advance, and I will receive three days’ notice of any food-related event at school.
• You can also include dietary goals as part of the IEP (e.g., self-monitoring when offered food — knowing what items are off limits, or knowing to ask a parent, etc.).
• Remember: in these proceedings, your goal is the successful and appropriate education of your child.
• WrightsLaw.com and AboutAutismLaw.comhave great information. AboutAutismLaw has lots of sample letters, too.

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Law day Wednesday, Feb 27 2008

I’ve signed up to attend TACA’s Special Education Law Day this Saturday, March 1. This is one area in which I definitely haven’t done enough research, but I want to feel prepared for and knowledgeable about Nate’s IEP process with the school district. I know we have the right to implement a special diet for him at the school, to be happy with and agree with the assessments they make of him, and to be satisfied with how they place him, but I want to know how to go about ensuring those things will happen. I’m really looking forward to the sessions on Saturday, and I will be sure to report back on what I learn.

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Autism is everywhere Monday, Feb 25 2008

I talked to a mom at the park today; we’ve seen each other there three or four times before and always speak. She has twin boys who are not yet two, and today she told me that one of them has been evaluated through regional center and is starting in-home ABA tomorrow. So of course we talked for a long time about it and Nate (I hadn’t mentioned his autism before, though I have no problem telling people about it, especially now that I am so proud of how far he has come). I told her briefly about the diet and also mentioned enzymes. I remember how completely overwhelming it was at first with Nate, so I don’t want to explode information all over her, but I think now she knows I’m here with information if she wants it.

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