Thursday, December 10, 2009
Thursday, November 19, 2009
I have seen Dr. Martha Herbert present several times and she is always impressive. Once again she gave an engaging, insightful and -- as always -- scientifically well-supported presentation. She challenged the old classic model of defining autism and researching causes and treatments. She asked what I think is a critical question: Is autism a "brain disorder" or is it a "disorder that affects the brain"? Based on what we learned from Dr. Herbert and others during the weekend, I vote for the latter! As Dr. Herbert argued, we need to move toward a whole body, interactive systems approach to autism.
She reminded us that "science" is not only about discovery, problem solving, and sleuthing, but also about rhetoric -- we need to challenge the old ways of thinking and change the model for autism. We need to reallocate resources for more direct and immediate help for those with autism. Dr. Herbert eloquently explained that she does not view autism as a tragedy because "tragedy" implies that nothing can be done. Rather, she views it as a catastrophe because we can step up in the wake of a catastrophe and take action.
Dr. Herbert demonstrated that it is not possible to explain away most of the increase in autism over recent years -- change in diagnostic criteria, age at time of diagnosis and inclusion of less severe cases can explain only a relatively small portion of the increase.
She also argued that we need to move away from thinking of autism as static encephalopathy -- whether "genetic" or "genetic/environmental" -- and recognize that the mechanism(s) of autism may be active. She discussed that the evidence now suggests "genetic influence" not "genetic determination" in autism causation and we need to recognize that the environment -- which impacts autism as well -- is not constant. Evidence of post-natal brain changes suggests that autism is not caused solely by prenatal injury/changes; however it is possible that prenatal injury may create a predisposition toward autism. Too many, according to Dr. Herbert, make the leap that something like prenatal insult, which might be a contributing element or a risk factor for autism, is the cause of autism. In fact, there is significant evidence of chronic/ongoing problems in autism, such as oxidative stress and inflammation, and these problems are not limited to the brain, which raises additional questions about the validity of the "all prenatal/predetermined" model.
She noted that there are some who believe that the brains of those with autism are "irretrievably broken." While there are changes in the brain associated with autism, we don't know if they are the cause of autism or caused by whatever it is that causes autism. Dr. Herbert discussed some of the science suggesting that there are improvements sometimes seen in autism suggesting that the "unfixable brain" theory is not valid. She also discussed the large scale structural problems sometimes seen in the brains of those with autism may not be the key playerbut rather that problems with cell metabolism can impact brain function and these may play a significant role. This theory makes sense because it helps explain that the cellular functioning changes seen throughout the body -- not just in the brain and changes in cell metabolism can be related to environmental insults. Moreover, many problems related to cell metabolism are treatable. She also talked about an increased ratio of excitation to inhibition in the neural pathways that could exhibit as many common features of autism such as seizures, sensory issues, sleep trouble. She discussed that treatments can potentially help many with autism (and other diseases such as Alzheimer's) by applying the new model of autism she discussed.
Dr. Herbert ended her talk of this new model of autism expressing the need to further research all the areas she discussed. She discussed research she and her colleagues would be doing in this regard and also urged that there be more formal documentation of recovery as a result of biomedical treatments so that the establishment could no longer ignore what so many parents and biomedical professionals are seeing -- children are getting better! While anecdotal evidence is nice, more formalized data collection is what is needed (not just clinical trials but also single subject studies where a child's treatment is well-documented and the child's progress is measured and compared at various points) to overcome the bias against biomedical treatments.
Sunday, November 15, 2009
Dr. Blaylock discussed early brain formation and the proper migration of brain neurons and the role of glutamate rising and falling (along with IL-1) at the right times. The brain, when formed properly, first forms too many coonections that then need to be pruned and refined by an increase in glutamate and IL-1. From birth to 2 years old, there is extensive dendritic and pathway formation, so you don't want to mess with glutamate or the immune system during this period.
He then discussed immune dysfunction. He discussed chronic activation of microglia - the immune cells of the brain - or hyperactivation of those cells, which should shut down after infection (or after they have repaired damage from infection). The greatest damage in autism is often seen in the cerebellum (and prefrontal cortex and limbic system). He discussed microglial priming - you have the first hit (be it prenatal or post -- it may be vaccine or illness, for example) and then when the next hit or hits come, there is an over-reaction and over secretion of glutamate and excitatory cytokines. Infection can also activate microglia, as can metals, including mercury and aluminum. Dr. Blaylock discussed that ionic mercury is the most toxic and most difflicult to remove from the brain. 34% of ethyl mercury (the kind in thimerosal) converts to ionic mercury in the brain while only 7% of methyl mercury (the kind in fish, for example) is converted to ionic mercury in the brain. Aluminum is absorbed in many organs, including the brain and it is cummulative. It keeps microglia active which leads to excitotoxicity and immune system activation.
Further, many other ingredients in vaccines can activate microglial cells. Glutamate reuptake also is suppressed which leads to further excitatory activity. Food intolerance is a sign of systemic and brain immune system dysfunction.
He also discussed astrocytes, which monitor what is going on in the brain. Mercury accululates in astrocytes and mitochondria. If the astrocytes cannot monitor, this leads to further trouble.
Finally, he discussed dietary and supplement treatment to help with immunoexcitotoxicity.
This was an extremely complex lecture and my synopsis cannot begin to cover it all. Moreover, as with all my notes here - any error is my own...
Saturday, November 14, 2009
She discussed the science behind how certain vaccine ingredients (even when allegedly treated to reduce activation) can cause injury. She explained how certain vaccines (such as DTaP, HIB and the seasonal flu vaccine) contain endotoxins and that often these vaccines are given on the same day thereby compounding the effect of those endotoxins. She highlighted the increasing number of vaccines and the increasing rates of not only autism but also asthma, ADHD, learning disabilities, and diabetes, among other conditions.
On www.NVIC.org you can find a new vaccine ingredient calculator which is a work in progress - check back for further refinements.
She discussed the risk of compromising the integrity of our immune systems by having no natural expose to disease. She discussed the increase in drug-resistant disease strains (with vaccine manufacturers' responding by merely creating new vaccines to address more strains). She also pointed out that many of those who have gotten sick in recent outbreaks of childhood disease are those who are vaccinated against the disease - we are creating more resistant disease strains in highly vaccinated populations.
She raised the fact that vaccine safety testing is not rigorous - vaccines in combination are rarely tested and the vaccine trial methodologies are set up in such a way that adverse reactions -- even death and serious injury -- may be written off and excluded as merely "coincidental." Other protocols may allow for the comparison of two experimental vaccines with no placebo/control. She also told the audience that reports of serious adverse effects to the H1N1 vaccine are coming out. In short, she referred to an uncontrolled national medical experiment on our children.
She urged parents to educate themselves to make the right choices for their family and to weigh the costs and benefits given your family's situation. She told us not to trust blindly but to trust those who earn our trust. We need to stand up for voluntary and informed consent and be brave enough to stand up for the integrity of our bodies and those of our children. It was chilling to hear Barbara frankly state that the biological integrity of the human race is at risk. She urged us to never give up.
Brain inflammation is a common problem for our kids and can be challenging to treat. Children on the spectrum often have chronic autoimmune processes. Neopterin is a good biomarker for this. High neopterin = inflammation and, in the absence of infection, suggests autoimmunity issues.
He also suggested some non-invasive biomarkers for inflammatory bowel disease or similar conditions. In particular, he suggested calprotectin as the biomarker that shows the strongest correlations with bowel conditions. Genova Diagnostics can run this test.
Dr. Bradstreet noted that differences between individuals' microbiotia influence not only our health risks but may also help explain why individuals respond differently to interventions.
Dr. Bradstreet noted that recent research has shown that, in one study, 11.5% of mothers of children with autism have reactivity against fetal brain (but not adult) without similar numbers in the control groups. The cause is not known at this time but may potentially be viral. This reactivity may also play a role in families with multiple children on the spectrum, but this requires more research to determine the connection, if any.
Dr. Bradstreet also said that while we know that many of our children have oxidative stress issues, we should test ourselves too. Many parents have increased RNA oxidation which increases our risk for early onset Alzheimer's Disease and Parkinson's Disease. We also are at greater risk for autoimmune diseases.
Dr. Bradstreet reminded us to take care of ourselves as well as our children.
Friday, November 13, 2009
For apraxia, she also recommended lymphatic drainage with craniosacral therapy or other modalities.
and can act synergistically with other things to activate the mast cells at a higher level and viruses also can activate the mast cells. I found these to be an exciting reason to keep investigating the potential role of vaccines both with and without mercury preservative. Dr. Theoharides also discussed discoveries relating to the potential role of mast cell activation in mitochondrial fragmentation (fission). As he spoke, I was amazed by the potentially powerful effect of these mast cells. The science was complex and I have barely touched on the doctor's many salient points, and I hope that I have given you a good taste for this emerging area of research.
"Don't wait to get involved." If the school staff is using restraints on your child, and you are not aware of it, your child is likely to suffer from post-traumatic stress disorder. Prone restraints (child is pulled down on the floor, face down) have led to death.
Look For These Signs:
1. School asks for consent for crisis intervention. Ask them to demonstrate the intervention.
2. School is using weighted sensory devices with your child without your knowledge.
3. School is reporting aggressive behavior more and more frequently.
4. Your child does not want to go to school.
5. You are not permitted to observe your child's class.
6. Window's of the glass are covered.
7. Changes in child's behavior: agression, does not want to be touched, regression, lack of appetite, sleep issues.
Here is what you can do:
1. Have it written in your EIP that the school will not use restraints, they will not call the police, and there will be no 'crisis intervention'. If the staff still puts it in the EIP, as a parent, you have the right to put in a written statement that you are NOT in agreement. This statement will protect you legally.
2. If you get complaints from the school about agressive behavior, have the school do a functional behavior analysis. It must include ABC data and should state what happened prior to the aggressive behavior. It should be over several days and in many settings.
3. Check the school's restraint log.
4. Once a monthn go to the school to observe.
5. Verify that the staff is trained and certified in crisis management, de-escalation, and restraint. Find out which organization trained them and ask for the training manual.
6. Write a "no restraint" letter to the school.
7. Document all conversations with school.
8. Reach out to your legislators to support restraint laws that protect your child's rights.
Don't wait to get involved.
(photos: Soma with NAA-NY Metro President Sabeeha Rehman and with me; Soma presenting)
Wednesday, November 11, 2009
Tuesday, November 10, 2009
Wednesday, November 4, 2009
Tuesday, November 3, 2009
On Sunday, October 25, Henry and I participated in a fun interactive workshop sponsored by NAA-NY Metro. Eric Chessen, who teaches fitness basics to children on the spectrum and teaches others who work with special needs kids how to teach them fitness basics and why the basics are so important, led the workshop. Henry had a great time with Eric and the volunteers. He even got to see his developmental pediatrician whom he has not seen in a long time (Hi Dr. Mark!) It was a spectacular fall day and a great chance for parents and kids to be engaged in a fun learning event. I blogged about it in more detail on NAA-NY Metro's blog.
Monday, October 12, 2009
My report on the conference was published today on Age of Autism . . . Check it out here and please feel free to comment.
Crazy busy here getting ready to renovate our apartment (walls coming down etc.!) but I will post more soon!!!
Tuesday, September 22, 2009
Enter to win, but even if you are not the lucky winner -- consider investing in this conference. The conference has a fabulous lineup of speakers! You can register here.
I am an officer and board member of NAA-NY Metro and this conference is an important event for our group. Come out and show your support -- and learn the latest info to help your child or others you know who have been affected by autism.
Sunday, September 13, 2009
HAVE YOU HEARD???
Educating & Healing Children with Autism
2nd Annual New York City Autism/Asperger's Conference
Autism Conferences has been sending out email reminders and brochures, but we wanted to be sure that you knew that this is an event NAA-New York Metro Chapter is proud to be a part of and we hope our members and other interested families take advantage of the opportunity to hear an amazing group of speakers all in one place!
Speakers: Eustacia Cutler (Author and mother of Temple Grandin); Nancy O'Hara, M.D.; James Adams; Ph.D., Doreen Granpeesheh, Ph.D; David Kirby; Barbara Fischkin; Dan Olmsted; Stephen Shore, Ph.D.; Deborah Gruber M.Ed.; Steven Blaustein, Ph.D.; Kim Stagliano; Peter Bell; Geri Brewster, RD; Stuart Flaum & AXA Advisors LLC; Christina Peck, CPC; and Melvin Kaplan, O.D.
DATE: Sat./Sun. October 3-4, 2009
Stephen Gaynor School
148 West 90th Street
New York, NY 10024
Sabeeha Rehman: email@example.com Phone: 917. 639.3397
Kim Mack Rosenberg: firstname.lastname@example.org
Peggy Becker: email@example.com
Saturday, August 29, 2009
I hope everyone likes the new banner I worked on today. The magnolia, fig, and pomegranate photos on the banner are some of the many shots that I have taken in France over the past few years. I love to get out and capture the varied fruits and vegetables that are flourishing each June that we visit. The photo on the left is an extreme close-up of a type of rosemary, and the one above is an abandoned henhouse -- I just loved the play of the light filtered through the trees against the old weathered boards. Enjoy!
The placebo effect has gotten a bad rap. The first line of the Wikipedia entry for placebo states that "[a] placebo is a sham medical intervention." The negative reputation of the placebo effect is based, in lay terms, on that idea that because something is "all in your head," it is a bad thing -- regardless of whether its effect is actually positive. A cynic might say that is because it is hard to bottle and sell the placebo effect.
However, more and more investigation of the placebo effect shows that placebos can have very powerful effects in healing. A recent article online at Wired.com provides a useful history of the placebo effect and its impact on modern medicine. In fact, according to this article, the placebo effect seems to be getting stronger in pharmaceutical trials, which has resulted in more medications failing trials because they are not sufficiently outperforming placebos. Research is being conducted now to explore ways in which the placebo effect can be used therapeutically in the treatment of patients.
But for those interested in energy medicine, the power of the brain to help heal the body is nothing new. The idea that the mind and the body can harness energy to heal and to stay well has long been accepted by practitioners and patients who treat or are treated using energy medicine techniques. The basis of energy medicine is described by Donna Eden on page 1 of her book Energy Medicine: "The first practitioner of energy medicine is you, the one who inhabits the body being cared for. Using the principles of energy medicine, you can optimize your body's natural capabilities to heal itself and to stay healthy."
I am interested in energy medicine generally and I also am a certified Level I & II Reiki practitioner, so it is no surprise that I am a believer in these powerful healing modalities. I have described to many friends the first time that I did Reiki on Henry. Rather than give a "full treatment," I asked Henry where he thought my hands should go. He indicated that the he wanted one hand at the top of his back and one at the base of his spine, which is the area I had wanted to treat. When I placed my hands and began treating him, I felt a strong energy flowing up and down his spine. I did not say anything to Henry though. When I finished, he turned over and immediately said, "Wow, that was like lightening going up and down my back!" Pretty powerful stuff!
Similarly, the mainstream medical establishment is beginning to learn that placebos are powerful healing tools are well.
Monday, August 24, 2009
Fellow autism mom and blogger extraordinaire, Ginger Taylor, who blogs at Adventures in Autism, was featured today on Age of Autism. AoA reprinted her amazing, intelligent response to the LA Times article: Bringing science back into America's sphere on Chris Mooney's book, Unscientific America, in which Ginger takes to task those who claim that there is consensus on issues such as any connection between vaccines and autism. Ginger effectively challenges the condescending, paternalistic (my choice of words) attitude of those "scientists" who treat parents as child-like and in need of re-education -- regardless of how credentialed we may be or how carefully and intelligently we analyze and parse the allegedly air-tight (not!) studies upon which they rely. Frankly, those with this attitude and the inability to admit that science is not infallible, utterly lack the scientific curiosity that leads to new discoveries and that is open to changing hypotheses. Science is not static -- it evolves. Those who believe otherwise do science an injustice and are, in fact, the ones who imperil the future of "science." In this area, there is much research left to be done, including a large-scale vax'd vs. un-vax'd study. The failure of the scientific community to undertake this study is of grave concern. To claim that it would be unethical to not vaccinate children for the sake of this study is a red herring. There are significant unvaccinated populations that could be studied -- many parents choose to not vaccinate their children for religious, philosophical, medical reasons. Parents are not asking for a study designed to reach any particular result. Rather, they are asking that needed studies -- whatever the results -- be undertaken. The failure to do so speaks volumes. Hello? Flat earth anyone???
Thursday, August 20, 2009
Earlier this week, we sent in a food sensitivity test for Henry called the ALCAT -- we are testing 200 foods, along with 10 food additive, 10 food colorings, 20 molds, and and a variety a environmental chemicals. This is a simple blood test that allows us to test many things to which Henry may be sensitive and will help us make decisions on how to further improve his wellness. Coincidentally, just today, a friend sent me a link to this Houston news report discussing food sensitivities and the ALCAT test. I am excited for Henry's results to arrive so that we can see what our next steps may be and I am really considering the test for myself as well.
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Tuesday, August 18, 2009
I am one week into my work with Kathleen and already feeling better. I feel more energetic (even my usual 3:00 slump seems to have disappeared!) and I am making changes I can stick with – I hope. Kathleen is a proponent of picking a few small things to change at a time because all of those small changes add up. I need this approach. My usual approach, left to my own devices, is to jump into something full bore, only to give up because it was too drastic and difficult. Kathleen tempers this in me. She also gives me someone to be accountable to in making my changes. These are things I definitely need. Add to that her knowledge, insight, accessibility and helpful tips and this is winning package!
So, what are my changes this week? I am supposed limit wheat at dinner as much as possible to improve digestion and inflammation. OK, that has actually been pretty easy!
I am supposed to make green smoothies a few times a week… Check! I went to a local health food store for fresh green smoothies from the juice bar while I was shopping for a high-powered blender to make the smoothies at home. I am the proud owner of a new VitaMix (ordered Weds. night and had it by Sat. – wow!) – it has the horsepower of some small cars. I have been making smoothies every day. I toss in all manner of greens and fruit and a minute later everything is mixed into a smooth smoothie – no lumps. I am choosing a green (kale, chard, romaine or some mix), parsley, cilantro, ginger, beet, celery, cucumber, some fresh lemon juice, chilled herbal tea, an apple (and maybe some other fruit). I am endeavoring to use all organic produce and I will mix it up depending on what is on hand and available either from the CSA or elsewhere. I add some maca powder and maybe a few cacao nibs and blend away. Yum. These shakes are surprisingly delicious - honestly. I usually have a hard time eating breakfast and these are a really fast, easy way to have a hit of nutrition at the start of the day and I have no problem drinking them down. I spend maybe 5 minutes the night before putting all my veg in a bowl and each morning I make an extra cup of tea to chill for the next day. In the morning, it is just coring and quartering my apple and dumping stuff in the blender. Super fast!
Next, I was supposed to try to go a few days without coffee this week. I have not had a cup since last Tuesday. I did not mean to stop cold turkey but it seemed to just happen. I am a fortunate coffee junkie – if I stop I don’t get the headaches etc. so this has been a not too difficult switch. I have been enjoying some herbal teas instead, but I am not foreclosing the possibility of a cup of coffee on occasion.
As an unintended benefit of these small changes, I am not craving the Coca-Cola that I know I should not drink, but love anyway. I have only had Coke on one day since I started working with Kathleen. That is probably the biggest and most unbelievable change – and it was not even on purpose.
Finally, on the fitness end, I was supposed to spend 30 minutes on Sunday reacquainting myself with the Wii Fit balance board that I have owned (and ignored) for longer than I care to admit. I put on the EA Sports Active disc and did a workout. I chose medium intensity workout that included running, boxing, kicking the heavy bag, squats, lunges, curls, inline skating, bent rows and other things. It was actually a lot of fun. However, perhaps I should have started off a bit more slowly as my quads have not been happy since Sunday!!!
More about Kathleen…
Kathleen is experienced and knowledgeable about a wide range of healing modalities. She is a Certified Holistic Health Counselor and Nutrition Consultant and holds a degree in Natural Health Sciences. She also is a Board Certified and Accredited Member of The American Association of Drugless Practitioners (AADP), with affiliations to The State University Of New York (SUNY). Moreover, she is a certified level 1 and level 2 Reiki practitioner.
To top it off, she is also a trained professional chef and personal chef, having cooked in homes and restaurants in
In addition, Kathleen and I are both involved in the NY Metro Chapter of the NAA and serve together on its Parent Mentoring Committee. She regularly attends AutismOne and Defeat Autism Now! conferences. Her website, autismhelpathome.com explains her services in more detail.
Tuesday, August 11, 2009
Each week, for more than half the year, we get fruit and vegetables from our Community Supported Agriculture ("CSA") group, the Carnegie Hill/Yorkville CSA. There are CSAs or similar organizations in many areas. You can learn more about CSAs in New York City here and around the country here. CSAs are a win-win for everyone. You help to support area farmers and, in turn, you get amazing local products. Through our CSA, we also are able to order (year-round!) meat, poultry, eggs, cheese, goat milk, breads, jams, honey, granola, and a whole variety of other products from local farms. The products are raised and/or produced to the highest standards -- this is good, clean, organic food (for example, the meat is grass-fed/grass-finished, the eggs come from pastured chickens). The food tastes amazing, the prices are fair, and we are helping the local farm community and our own health. Here's a picture of just some of the wonderful produce we got today -- isn't it just beautiful? The lettuce, some carrots, the cucumber, some onion and one of the peppers made a great salad tonight. We also got lovely beets, edamame, and more fruit too!
Monday, August 10, 2009
Sunday, August 2, 2009
I posted a month ago about Henry starting camp and now . . . (POOF) . . . camp is over. I cannot believe four weeks flew by so quickly. I guess the reason I did not blog more about camp was that it was remarkably uneventful. I don't mean boring, I mean without incident! Henry had a great time. I know that he participated as well as he could in all the events and activities (the stuff that was entirely verbally based was challenging) and he made friends (one of his new friends even made him a really sweet card about how much he likes Henry!) Other kids were happy to see him at drop off (and Henry was happy to see the other kids too).
This camp is University-themed so every two weeks is a "semester" (you can sign up to attend in two-week chunks). Each "semester" the campers choose a major and two electives for their small group activities and then the rest of the day is spent with the whole camp group. On the last day of each semester, the kids perform for all the parents, demonstrating what they learned in their various electives and majors. We missed the show after Henry's first semester because he overheated in the park that morning and got sick, so we were looking forward (with a little nervousness though) to this one. First up for Henry was his digital recording group -- Henry and a whole bunch of girls!!! The group wrote a song and learned about recording (he came home with a CD that he made). Henry hid behind his lyrics sheet for much of this (singing though) but at the end began to warm up, sing in a louder voice and dance a bit! Next was his chess group. The instructor chose Henry to go first and asked a whole series of questions -- all of which Henry capably answered!!! His Story Pirates "major" talked about the solar systems they created as part of their story writing/acting exercises (Henry was a bit shy and quiet explaining his -- which was based on a Jimmy Neutron episode -- but when the instructor said something incorrect about it, Henry was quick to correct her!). He also got a beautiful copy of the illustrations all the kids made -- he is a terrific artist. Finally the whole camp group sang "We are the World" (the head of his camp proudly told me that Henry learned the entire song and that he had a great time in camp!) All of the campers were terrific and demonstrated lots of different electives. Everyone did a great job. Here is video of Henry answering his chess questions (sorry the audio is not better).
Yesterday afternoon, Cliff and Henry headed to Victorian Gardens in Central Park. Until recently such a trip was not possible because of Henry's motion sickness problems. He still gets arbitrarily carsick (that's the "fun" of it -- you never know when it will happen (e.g., straight road, constant speed -- not necessarily safe)!). However, his vestibular system obviously is making gains - he spun around on this thing just fine (I think that vestibular issues are one component of motion sickness though not the entire story). They had a great afternoon.
Friday, July 31, 2009
Non-toxic paint ("low-VOC" or "no-VOC") is now an easy choice almost anyone can make in an effort to be more "green." VOCs are "volatile organic compounds" and, suffice it to say, they are not good for us. It is important to make a low- or no-VOC choice because "regular" paints off-gas for years after painting, continuing to release toxins into your family's living space. Yuck! I found this terrific link that provides information and additional links on all kinds of low- and no-VOC paints -- from the mainstream retailers (Sherwin Williams, Benjamin Moore) to the more esoteric (milk paint).
We are about (hopefully) to begin a major apartment renovation -- walls coming down and other exciting events and we are trying to make green choices as we renovate. One of the final steps of the project will, of course, be painting. I am leaning toward Mythic Paints. I love that they are very safe from both a human toxins standpoint and from an environmental perspective (read their FAQs page for more details). Plus they come in loads of absolutely gorgeous colors -- just look at the photo of my Mythic fan deck. I am having so much fun trying to choose colors. I have heard great things about Mythic from a health perspective as well as from a performance perspective. After all, we do want the paint to be healthy and apply easily and last for years.
Sunday, July 26, 2009
Yesterday I mentioned my friend's blog, www.whattofeedyourkids.com. Well, there is a great crepes recipe there and I made it for the first time today, after eyeing it for awhile. I used tapioca flour and, since we generally don't give Henry sugar (the recipe calls for a tiny amount -- fine for most kids), I substituted a bit of agave and reduced slightly the water recommended. They worked perfectly! I was tempted to flip them a la Julia Child (having just finished reading "Julie and Julia" by Julie Powell on my Kindle, I am in a Julia Child mode, and even made baked cucumbers from Mastering the Art of French Cooking for dinner tonight) but will save the flipping for another day. I encourage anyone who wants a spectacular gluten-free dessert to whip up a batch -- the recipe is quick and easy and the results are lovely and delish. We each had a wonderful crepe (smeared with a berry puree from berries we got from our CSA this week), and then I turned to making popcorn.
We recently have begun allowing a bit of corn back into Henry's diet and Arrowhead Mills has organic kernels -- with just a bit of oil they pop nicely in a big le Creuset covered pot on the stove! As a person whose formative years were spent in the Midwest suburbs in the 70s and 80s, I grew up with one of those plasticy air poppers that now give me the willies (heating up all that plastic -- Yikes). I actually had to turn the The Joy of Cooking for old-fashioned popcorn popping. I have found that, no matter how inane (or how odd or obtuse) a question you might have, the JOC is a great resource (along with The New Basics Cookbook) for basics like how long to cook something (or how the heck to make popcorn that is not encased in aluminum foil or a microwave bag). I love cookbooks, I can just sit and read them (and thus totally appreciate how Julie Powell ended up doing her project) and I love to try and adapt new recipes (esp. trying to make flavorful recipes that fit Henry's dietary needs and that the whole family can enjoy), but sometimes you just need to remember how long per pound a roast needs to be in the oven -- or how to make popcorn the old-fashioned way!
And our dinner of perfectly done (thanks Cliff!) rib eye and baked cucumbers was terrific too (Henry opted for plain baked cauliflower but next time I will substitute ghee for the butter in Julia's recipe and serve the cukes to him too).
Saturday, July 25, 2009
I Love, Love, Love my friends (OK, I watch too much RHONJ, I admit it)... But seriously, I do love my friends for many reasons -- mostly because they are a bunch of amazingly smart, fun and supportive women who are there for me when I need them. But I also love that we are always sharing ideas and resources. Many of my friends are also parents of special needs children and we are an inquisitive bunch, always looking for new biomedical, alternative, medical, educational and therapeutic treatments to help our kids. So many things that we have done with Henry, we have done because I learned about it from friends' successes -- seeing my friends' children blossom not only makes my heart sing but it also is a great advertisement for an intervention, of whatever sort. As with all things, not everything works for everyone, but if I have seen a friend have success with something I am much more inclined to try it. Of course, we also consult with our doctors, other specialists, and therapists about new interventions for Henry and it is always important to do your own homework on any treatment.
A big part of what we do with Henry is dietary intervention. This has been a critical part of his healing. Henry's GI system was in such bad shape a few years ago that he literally stopped eating because all food made him feel sick. I cannot even put into words how heartbreaking it is to have a 4 year old who absolutely refuses to eat for weeks. I heard from people, "oh, he will eat when he is hungry" and I knew, because I was living it, that this simply was not true. One night he sat for 4 hours at the table with my husband refusing to take a single bite of his favorite food (lamb chops). It stopped after 4 hours, not because Henry gave in, but because my husband could not take it any longer. We were close to hospitalizing him more than once through this process. Through work with a great nutritionist, Kelly Dorfman, an amazing feeding therapist, Tina Tan at NYU Rusk Pediatric Feeding and Swallowing Disorders Center, and a pediatric gastroenterologist, Arthur Krigsman, who is one of the few gastroenterologists in the world who really "gets" that many spectrum kids have very serious GI disease, we saved Henry (I know that sounds dramatic but he was such a sick little boy he needed to be saved). It was not easy, and it was not fun, but it was necessary.
We have done several of the "autism diets" (such as GFCF and SCD), or combinations thereof, and they have been critical to Henry's improved health. As a result, while his diet is restricted, and may always be, within those restrictions, Henry actually eats a huge variety of really healthy foods -- included many, many forms of protein and tons of vegetables (he is not a fan of sweets so he prefers veg. to fruit and has no interest in candy and cake).
Henry's diet is always in flux so we are trying new foods -- some work and some don't for him -- as we try to find the right combination for him. Sometimes things work for awhile, and then stop, which is frustrating for everyone, including Henry when we have to take away a food that previously did not cause GI problems. Lucky for us, he is a pretty flexible kid.
If you are interested in exploring dietary changes for your special needs child, there are many great diet and recipe books for parents of ASD kids but my favorite resource that brings a lot of it together is Nourishing Hope for Autism by Julie Matthews. Julie brings together critical information about all the top special needs diets. Nourishing Hope for Autism is an amazingly comprehensive book that provides an in-depth introduction to and overview of the latest information out there and helps parents understand why special diets can help children and helps parents to determine which diet/diets might work for their child.
Now we are back to where I started -- about loving my friends. Recently, I have gotten some great special-diets-friendly food sources from friends (thanks Melissa and Dara!). Henry absolutely loves the Italian dinner rolls from French Meadow Bakery (photo on the right, on a regular-sized dinner plate) and the bagels (dairy-free variety) from Joan's GF Great Bakes (photo on the left, also on a regular-sized dinner plate and that is Henry at the top, goofing off with a Joan's bagel!). I also have been making breakfast quesadillas (filling: eggs, veg, and some prosciutto (check ingredients carefully -- you need high quality prosciutto)) using French Meadow tortillas and these have been a hit. We have Joan's English muffins and pumpernickel raisin rolls in the freezer just waiting to be tried. The Joan's bagels have to be thawed either in the microwave (which I try to avoid) or on the counter and then baked and cooled, but they are worth the effort. They have a nice crisp and golden bagel exterior and a squishy interior - YUM. They even LOOK like bagels. As a real test, my husband tried one and really liked it.
One of my all-time favorite bread products is from Chebe. The Chebe products are made from manioc (a.k.a. cassava or tapioca flour/starch), which is a wonderful wheat substitute. We use the all-purpose mix, as well as the focaccia and pizza mixes. You can do a lot with these mixes -- rolls, flatbreads, pizza crusts, bread sticks, pocket sandwiches with hot fillings. The mixes are super easy to make, you add oil, eggs, and water (or a milk substitute) -- literally 2 or 3 minutes to mix and 20 minutes or so to bake. Even very young kids can help make this -- the social and educational aspects are an added bonus. Henry can pretty much make this himself now, which means I have at times come into the kitchen finding him having opened the packages and already mixing everything! This summer, because Henry cannot take his usual almond bread to his nut-free camp, I have been rolling out the all-purpose dough in a thin layer and cutting 3" diameter rounds with a big cookie cutter to make round sandwich breads. Henry takes pumpkin butter, apple butter and raw honey sandwiches to camp.
We also discovered, through the Body Ecology Diet website, some new products, including a snack that is a lot like potato chips but healthier. Arico Foods Sea Salt Mist Cassava Chips are awesome and they are available in health food stores and online (there is soy in here in the Vitamin E, Henry tolerates a small amount of soy in things like vitamin E so these are OK, in moderation, for him; the other flavors have ingredients we cannot use, but for those with less restrictive diets, they sound terrific). I also learned about Grindstone Bakery breads. My friend Dara and I ordered some together, to save on shipping. I ordered the quinoa and millet loaf with sprouted seeds. It is a heavy bread and I loved it but I think the seeds were off-putting to Henry. I am going to reorder the plain quinoa and millet loaf, since Henry was trying to pick out the seeds and eat the bread, suggesting to me the plain loaf might be fine for him. The Body Ecology Diet ("BED") is something I am learning about and incorporating some principles of into our diet, including fermented foods and beverages. I think that this way of eating could be very helpful to the whole family.
A note on all the sites discussed above, not everything is GFCFSF (gluten-free, casein-free, soy-free) so look carefully at ingredients before you order to make sure the products you choose meet your or your child's particular dietary restrictions and needs.
Another of my wonderful friends blogs at www.whattofeedyourkids.com about food issues, new products, and her own amazing recipes (and other wonderful and important things!). This site is always a "go-to" resource for me. I highly recommend that anyone facing food challenges check our her blog -- you will not be disappointed by the comprehensive, fun, and thoughtfully presented ideas and information.
Tuesday, July 7, 2009
Monday, July 6, 2009
Today is Henry's first day at a mainstream day camp program . . . fingers crossed. He is excited about going and making new friends. I spent a few hours yesterday ironing labels into everything he owns. I wonder how much clothing we will manage to lose (he is responsible for all his stuff when he changes for swimming every day etc.)!
Sunday, July 5, 2009
Last night, the movie "Happy Feet" was on the Disney Channel and Henry and I started watching (he saw it in the theater when it came out and about a gazillion times when we first got the DVD, but it has been a long while). Cliff went to bed early and I let Henry stay up late (I know, I know!). There is a scene in the movie where little baby Mumble (the penguin who can dance but cannot sing) is almost scavenged by evil birds. He falls into a little crevasse to save his cute little penguin patooty (and besides, we grown ups know there would have been no movie if Mumble was eaten by birds early on). At the end of the scene, I commented, "Wow, that I was kind of scary, I am glad Mumble was ok." His response, "No, it wasn't . . . but don't look at me." So -- of course -- I immediately look at him , and he turned his head toward me and his eyes were welled up with tears. Not tears of fear (I could just tell) but tears of real concern over Mumble's well-being. He curled up against me to keep watching the movie. My own eyes were tearing up over how touched he was by this little penguin's plight and that he really "got" that movie moment.
Sunday, June 28, 2009
Methyl B12 is so important for so many kids on the spectrum. Biologically, it is a critical piece in the methylation cycle. For Henry, MB12 brought on so many speech and socialization gains -- a real miracle for us. In fact, here we are on Doctor Neubrander's website talking about it. Henry started MB12 injections at 4.5 and got them, mostly daily, until recently. We have since discontinued the injections -- everyone thinks that, for now, he no longer needs the intense B12 dosing - though he still gets some orally.
Stan Kurtz, who has done so much for his own son and many other children (through Generation Rescue and elsewhere) -- recently launched a new MB12 lollipop: RevitaPop. I could not resist trying them. They are made with natural ingredients and are even GFCF. It remains to be seen if Henry will use them -- he is not a big sweets eater at all -- but I can attest to the fact that these pops work -- I get a nice energy and focus burst from them. They were very nice to have around during all our appendix trials and tribulations, when I needed a little pick up. I also think they are delish -- and would imagine that most kids will love them (and we will keep trying with Henry!) In the meantime -- I am keeping them for myself (and will definitely reorder!!!).
Alas, right now I should be poolside in Provence. Instead, I am in my living room. Not a bad place, just not where I planned to be. A few weeks ago, our annual vacation plans went awry.
Actually, my DH's appendix went awry and everything cascaded from there. I was enjoying the annual cocktail party for Henry's school -- chatting with old friends and meeting many parents who would be coming to the school in September. Because I am a nervous Nelly and Cliff had not been feeling well, I was checking my phone pretty regularly and even had suggested to him that Henry's nanny stay until bedtime to help him. I did not check from about 8:40 and 9:10 and then I discovered I missed 11 -- yup 11 -- calls in that time -- starting with "call as soon as you can" and ending with "at Mt. Sinai, get here ASAP"! I did not even know who was at the hospital...or why. I ran out of the party and jumped in a cab. In the cab, I got through to our nanny who was in the ER with Cliff. Her 14 and 12 year old daughters were with Henry (thank goodness they were there and he did not have to go to the ER too!). Everyone seemed pretty sure that it was Cliff's appendix and I was so impressed with the ER at Mt. Sinai, they were really attentive. Cliff's internist was contacted and identified the surgeon he wanted -- and he showed up in the ER at about midnight to see Cliff. Cliff had a CT scan at 4am and was then moved to a room. He went into surgery that morning and was there for about 3.5 hours -- apparently one of the messiest ruptures his experienced surgeon has seen. Long story short... after a week in the hospital (with Henry visiting and asking hysterical questions about who the surgeon was, what medications were administered etc.), Cliff was released, and it was only after about two weeks at home that there is any semblance of normalcy returning (and he is still far from being himself).
Many thanks to all our friends who really stepped up to help us out and offer support and assistance -- I could not have done it without you guys!!!
Oh, and somewhere in there, Henry caught the flu (regular type A not the swine flu) and missed almost the entire last week of school (made it to the end of year party the last day). He improved and then relapsed this Thurs.
The internist told us there was no way we were leaving for France on June 19 as planned nor could we leave a few days later (my pipe dream). So on June 18 I had the sad task of unwinding all our plans. The folks at FlyOpenSkies -- our carrier over the Atlantic -- could not have been nicer, I had emailed vouchers for our full fares within literally 10 minutes (and a personal email telling me how sorry they were that Cliff was sick and hoped our next trip was great -- way to build customer loyalty guys!!!). Our flights down to Marseilles were not refundable and not even a credit was offered but I will still fight that battle (different airline).
Henry had plans of his own -- first he said, "Why can't we just leave him here." Good question, but I behaved like an adult and explained that we were a family and we take care of each other. His Plan B -- "Why can't his own mom come and take care of him." (Ummm . . . because she is in France waiting for us, but Henry did not want to hear that!). In the end, Henry has been pretty good about it -- though he suddenly has shown a hitherto unseen interest in speaking French. He has had lots of playdates the past week and hopefully will this coming week as well if he shakes his flu bug (cough and fever only).
Camp starts on July 6 --and Henry is really excited about it (we went to pick up his t-shirt and other gear because he was sick on the welcome to camp night so he could check it out). This is an exciting and nerve-wracking adventure for me -- Henry is going to a typical camp without an aide, all day every day! Fingers crossed...
One of Henry's OTs -- the fabulous Jodi Jennings -- shared this photo a few weeks ago of Henry after an OT exercise.
Jodi described it like this:
One of the most amazing things about Jodi is that she really combines so many modalities in a treatment session. She is always changing theses up and building social goals into her OT sessions, often using Floortime principles. The best thing is that Henry loves to go to see her -- who wouldn't if you got to do stuff like this! BTW, She is also a terrific cranio-sacral therapist. Is there anything she can't do (oh yeah, she took these photos too)???
Sunday, June 7, 2009
The morning of Henry's test, we hopped in the car and drove up to Muscoot Farm in Katonah, NY for the National Autism Association - NY Metro Chapter's Family picnic. We saw (and petted) lots of animal babies, took a hayride, and hung out with friends old and new. We had beautiful weather and many families in our chapter came out to enjoy a beautiful Spring day on the farm. We had to leave right after our picnic lunch to get back to NYC in time for Henry's purple belt test -- but would have loved to have stayed longer. On the left is a picture of Henry and Cliff meeting a friendly goat.
Sunday, May 17, 2009
On Thursday and Friday, we will be in sessions with the newly-established Elizabeth Birt Center for Autism Law and Advocacy. This training should further my knowledge of legal and advocacy issues relevant to ASD and help me to help our community. I serve on the Advocacy Committee of NAA-NY Metro and expanding our knowledge base will help us further our mission. I also recently did a full day continuing legal education seminar on school law, which focused largely on NYS issues, so I am hoping that I can expand on what I learned there. Thanks so much to Mary Holland for helping to make this opportunity happen!
I also am looking forward to the chance to catch up, however briefly, with friends from around the country. Unfortunately, I cannot stay for the whole conference and will head home on Saturday morning.
I will report more upon my return.