Friday, November 14, 2008

Patty Lemer from Developmental Delays Resources

November 19, 2008
Choosing and Prioritizing the RIGHT Therapies for Each Child

How do parents and professionals determine where to put valuable time and resources? Patricia S. Lemer, M. Ed., NCC, co-founder and the Executive Director of Developmental Delay Resources (DDR) is a counselor with over 40 years experience. She offered a road map for parents based on her new book, EnVISIONing a Bright Future: Interventions that Work for Children and Adults with Autism Spectrum Disorders at our November meeting.

Patricia Lemer's book offers clear and concise information to help professionals and parents better understand many of the pressing issues in autism. With chapters written by top experts in their fields, I recommend it highly." - Stephen M. Edelson, Ph.D., Director, Autism Research Institute (ARI)

Tuesday, November 11, 2008

SCD Recipes from Autism Help At Home

These are recipes courtesy of AutismHelpAtHome who led a Specific Carbohydrate Diet (SCD) cooking class for members of our Naavigator program.

Seared lamb chops

Grass fed rib lamb chops if possible, coat with olive oil, coconut oil, or both, season well with sea salt and ground pepper, sear on medium heat till browned (about 3 minutes depending on thickness), turn over to finish off the other side. Remove from pan and allow to rest, then pour juices and meat back in to pan, to coat in remaining juices.

Turkey cranberry meatballs

Organic turkey meat (about half a pound), ground up in food processor with a few precooked baby carrots, a small handful of roughly chopped Italian or curly parsley, half a cup of organic raw cranberries which have simmered in water for an hour or so, a teaspoonful of sage or poultry seasoning, two roughly chopped scallions, sea salt to taste, ground pepper, two cloves fresh garlic and a bit of olive oil or other fat of choice. Roll into balls and place in medium hot cast iron skillet with a little fat in it, turn when golden brown, reduce heat to finish off, cooking all sides evenly.

Savory zucchini sauté
Can be done with or without meat, but today I chose meat. Brown half a pound of ground meat of your choice (we are using grass-fed beef) with a drizzle of olive oil, a handful of chopped organic peppers, chopped red or yellow onion, and one large thin sliced zucchini. Add 2 chopped garlic cloves, two or three tablespoonfuls of SCD tomato sauce, two teaspoonfuls of oregano, sea salt to taste, ground black pepper and a handful of chopped parsley. Then pour about two cups of organic chicken broth over, stir and simmer with lid on till most liquid is absorbed. Adjust salt.

Chicken apple pancakes with honey cider syrup
Largely chop one raw boneless skinless chicken breast and simmer in water or broth till just cooked (not pink) then drain and put into food processor with a few pre-cooked carrots, one large peeled deseeded chopped apple, teaspoonful of sea salt, dash of honey, dash of cinnamon and 3 whole eggs. Process till smooth, should be a pasty consistency. Spoon batter onto greased medium hot skillet which has heated for at least ten minutes to avoid sticking. Turn when bottom side is browned, being careful to not break.
Syrup: Pour two cups apple cider into sauce pan with half a cup of honey and one cinnamon stick if you have one, and a pinch of sea salt. Simmer and reduce by about half. Adjust honey for sweetness. You can add SCD vanilla at the end.

Roasted butternut fries in duck fat
Peel butternut squash, halve it, scrape out seeds and slice into spears. Toss them in duck fat and some coconut oil, season with sea salt and place on baking sheet (lined with parchment paper if non-stick metal) in the oven at 400 for 25 minutes or until browned, carefully turning and cooking till done.

Warm cinnamon pears with gorgonzola and roasted figs
Peel, core, and quarter 4 ripe Bartlett pears. Place in saucepan with water half way up. Add two teaspoonfuls of cinnamon, _ cup of honey, pinch of sea salt and simmer covered till tender (about 7 minutes). While pears are simmering, slice unpeeled figs in skillet with a little clarified butter to brown. Stir pears gently to coat, then remove from heat and let cool. Remove from pan to cut into large chunks while reducing left over juices in the pan. Return chunks to pan to toss gently then plate with roasted fig halves and chunks of chilled gorgonzola.

Spaghetti squash with parmesan
Cut large spaghetti squash in half and scrape out seeds, season with sea salt, ground pepper and olive oil, then place open sides down onto baking sheet. Bake for 45 minutes at 375. Use fork to twist flesh around inside and drizzle with olive oil or coconut oil, or clarified butter if allowed. Grate fresh parmesan cheese (parm regianno is preferred), over top, and serve.

Spiced butternut squash pudding
Slice a butternut squash in half and scrape insides, then place open face down onto baking sheet for 50 minutes at 400. Let cool then scrape into bowl, and mix with 2 tablespoonfuls of honey, heavy dash of cinnamon, heavy dash of nutmeg, small dash of ground cloves, sea salt and ground pepper. Add a little olive or safflower oil and whip up till smooth. Serve warm or chilled in custard cups. Can top with a little toasted unsweetened coconut flakes.

Organic ginger tea
Grate about 4 tablespoonfuls of unpeeled organic ginger root and place in the basket of a teapot filled _ full of hot boiled water. Steep for five or six minutes. Add 3 tablespoonfuls of honey and juice of half a lemon, then stir and strain into mugs.

To make ghee:
Very slowly melt one pound of unsalted organic butter in a sauce pan on medium heat. As the butter melts it will begin to boil and separate (white froth on top with sediment settling to the bottom of the pan). Keep the butter simmering slowly and steadily. Do not stir or agitate the pan. Allow the butter to continue to cook until the bubbling noise quiets down, the sediment at the bottom of the pan starts to turn golden brown (you can check the color of the sediment by gently tilting the pan), and the liquid under the froth begins to turn an amber color (it usually takes about 20 minutes). The smell also changes to that of freshly baked croissants. All these signs indicate that all the water has evaporated. Leave the cooked ghee to cool for half an hour, then carefully spoon off the whey solids on top and discard. Line a strainer with either some cheese cloth or unbleached paper towel, and strain the ghee into sterilized jars. The ghee will turn hard when cooled and look yellow in color - it melts quickly when exposed to heat. If it is properly made, ghee will keep for over a year, even outside the fridge.

Click here for a youtube demonstration of making ghee.

Friday, November 7, 2008

FluMist: A (very) Cautionary Tale

As the flu season is upon us, I want to share our family's terrible experience with the nasal FluMist so that hopefully other children and families can be spared from a similar nightmare.

Last year we gave our 4.5 year old son the new nasal FluMist which is being marketed aggressively to young children as a seemingly "safe" alternative to the flu shot. It supposedly does not have Mercury like other flu shots and is very easy to administer as it is simply inhaled, avoiding a painful shot (which could seem to be a good thing with young children). What we did not realize is that it is a very powerful live virus and has some very, very bad preservatives, such as MSG. Worse of all, it contains Polysorbate 80 which breaks through the blood/brain barrier in order to penetrate the brain directly!

One week after receiving the FluMist, my son had a very severe Autistic regression. Previous to the FluMist, our son had some very mild sensory integration issues, mild fine and gross motor delays and a slight receptive/processing language delay. His expressive language was very strong (huge vocabulary, non-stop talker…). He was a very happy, affectionate, completely related little boy who loved creating complex imaginary play scenarios, did a great job sharing with other kids and did well in a general ed school environment. He never had tantrums or any real behavioral issues. Many professionals highly experienced in developmental issues with children had told us that he was no where near to being on the Autistic spectrum...

Days after taking the FluMist, our son suddenly began seizing and became completely non-verbal. He had severe explosive tics, began stimming (hand flapping, spinning, chewing on everything), he completely stopped playing with peers (and began grabbing toys and hitting), had severe and frequent meltdowns for no reason at all, he mindlessly ripped up all his favorite books. Previously potty trained, he totally lost the ability to control his bowels and he refused to wear clothes and shoes, unable to understand the need to wear them even in public. He lost eye contact and refused to acknowledge the presence/gestures of affection of even mom and dad with whom he previously had an extremely loving relationship. Before, he constantly asked for us to play with him—now he did not even recognize our presence and would not allow us into his play, which suddenly consisted mostly of lining up and stacking objects. At the playground he had great difficulty navigating equipment he’d been playing on for years, he misjudged distances, banged his head, slipped and fell constantly—even more troubling, rather than play he preferred to lie on the ground and stare at and stim on patterns in the sidewalk. A good sleeper before, he virtually stopped sleeping at night, waking constantly, often with terrible nightmares. Day and night he was riddled with unreasonable fears and anxieties, he had episodes of self-injury and could not stand any kind of noise, crowd, lights, etc. As he slowly began speaking again, he referred to himself in 3rd person (before he always said “I”). These were ALL new behaviors. It was horrifying and heartbreaking beyond belief. He was a completely different child! He had had a very strong, pretty well formed personality and I felt as though someone had snatched his soul away overnight. Needless to say, we rushed him to many doctors and all the best neurologists and we did a full EEG testing at NYU which was clear. No one had any answers. We were told he was now Autistic and that was that (by the way, none of the many doctors had ever themselves seen a similar case of a 4.5 year old suddenly becoming completely Autistic…it is VERY rare at such an advanced age.)

When we found some excellent holistic doctors, we began to understand better what was happening to our son. His first urine tests showed a level of 188 for glutamate. A normal level is between 12-30 as well as many other very interesting results. His brain was on fire. MSG is a very harmful, known excitotoxin* (see below for a little more information on excitotoxins)

I am thrilled to say that through a very aggressive bio-medical program (GF/CF, detox, enzymes & supplements, cranial-sacral, LOD and more to come!), just one year later, he has now almost completely recovered from this awful regression. He is now once again a delightful, fully verbal, fully related, mostly regulated and happy little boy who plays very well with other children and does extremely well in school in a mainstream inclusion environment. It's hard to believe the transformation and we thank God everyday.

Of course it has taken a tremendous emotional and financial toll on our family and it remains to be seen if there will be any permanent, long-term damage to our son. There are still a few certain elements of his personality that have not fully returned (he was VERY empathetic before, and now I’m happy to say he’s regaining this ability, but it’s still not at the same level as before) and there are certain skills (drawing more detailed pictures) which he has not fully regained… His ability to self-regulate remains somewhat diminished, comparatively speaking. On a good day he is regulated, overall. On a bad day he needs help with a sensory diet, and even then sometimes he loses it a bit in the harder transitions/moments. His immune system is clearly much more fragile than it ever was before and we do not know what the future holds…. We will never know how far along he would be developmentally today without this happening. It is also clear that he carries some pretty serious emotional scars from these events—he has many bad/scary memories of hospitals and doctors and a lot of fears about something being wrong with him…

But really, we count ourselves extremely lucky. And now we are very concerned for other families who might face the same terrible consequences of the FluMist. We feel honor-bound to warn other families of the potential danger and hope that something good for someone else can come from our awful experience. Of course it's a very personal decision for each family, and we respect that. I just want to ask people to consider the decision very carefully, particularly if their child has any sensory issues or developmental delays. I have heard so many parents say they are so happy that now there is a flu vaccination option that does not contain Mercury, but just beware that there are other very dangerous components to the FluMist! Also, one of the reasons that I decided to give the flu vaccination is precisely because our son had a weak immune system…he seemed to get sick at the drop of a hat. But I did not realize that that logic is faulty and one that causes many parents to make a similar mistake. If a child has a weak immune system, vaccines are even more dangerous as the body cannot deal with them in the proper way. Now I understand that a weak immune system in a child can seriously effect the brain and result in worsening neurological issues, therefore the focus should always be first and foremost, about strengthening the immune system—which does NOT mean bombarding it with a live virus, foreign proteins and a host of dangerous preservatives such as MSG….

I am certainly not an expert. I am learning all this stuff as fast as I can and pretty much flying by the seat of my pants as we go, but please, feel free to contact us anytime if anyone has any questions about our experience. We would be really happy to try to help!

*An excitotoxin is a name that is given to one of these neurotransmitter chemicals that comes from outside of the body and has an excitory effect. Over stimulation of the neurons causes them to fire repeatedly and can be damaging to the neuron such that it can die and types of brain damage will occur. Excitotoxins are not foreign, man-made drugs administered to the body but rather natural compounds identical to the brain chemical that are at levels above that normally found in the brain.

The most problematic excitotoxins are those that are amino acids, the chemical building blocks of proteins, such as glutamic acid, usually referred to as glutamate (monosodium glutamate or MSG is the commercial preparation used by the food industry), aspartic acid and L-cysteine. All are neurotoxic, but glutamate is the most potent.

Tuesday, November 4, 2008

Green Our Vaccines Rally

A personal story of the rally.

by Sabeeha Rehman

WE DID IT!!!!!

The Green Our Vaccines Rally was beautiful.

Khalid drove Tom Gomez and me to White Plains. Tom was at my apartment 2 am. We left at 2 am. After getting to the Courthouse and not being able to find the entrance, and after several call, we located our group. Khalid dropped us and drove back. I was praying that he make it back o.k.; weather was bad and visibility was worse. We waited in Lisa's car until the others came. And that is where I met Nancy Gardello, who had just volunteered to chair the Events Committee. She is an amazing person! We are very lucky to have her on board. Then it was, "lets go" and we ran over, with our umbrellas, braving the rain and waited outside the courthouse for the bus. Lisa and Natalie had brought water, breakfast bars, goodies, and anything you can think off to keep us comfortable. We piled into the bus and took off at 3:45. And then we froze. The temperature had to be sub-freezing in the bus, and outside it was dark and raining. The driver had to keep the temperature low for a number of reasons, but thats another story. I was dressed for a hot day and had no more than a light cotton windbreaker on me. Khalid called me around 4:30 to let me know that he was home. At 5:00 we got to the NJ pick up and promptly got lost. We went all the way in the wrong direction, and several calls later, found our way to the park-n-ride and picked up our NJ friends. And then Lisa started distributing her goodies for breakfast and everyone lightened up. There were children in the bus, fast asleep. Bless them! We walked down the aisles, making acquaintances, sharing experiences, exchanging cards, and chatting all the way. Even I was chatting. Natalie, the organizer, gave out green poster boards and we posted our children's photo on each poster board. Just that weekend, Saadia had given me 4x6 of Omar's.We hit traffic getting close and into DC and got to the Washington Monument at 9:30 am. We stepped out into the hot air and instantly thawed. It had stopped raining and the sun was shining on us.

Amy and Mary had taken the sensible train ride, leaving at 5am. So they spent $100 a piece, but they got all that sleep.

From that point on, it was sheer heavenly. People in green tee-shirts saying 'Green Our Vaccines' were all over the place. We were immediately directed to the site, and all the way, volunteers in green tee shirts were waving us along. I wasn't sure how we would meet up with Amy and Mary. But as soon as we got to the end of the line, there they were, Amy and Mary. And then John Gilmore shows up. We couldn't have planned it better. Cameras were whipped out, and we were posing with our posterboards. The place was lined up with moms and dads with their posters, childrens' photos all over the place, and Green-Our-Vaccine shirts, and posters that said, Too Many Too Soon". We couldn't spot Jenny or Jim, but hey, we were there, and thats what counted.

Louis Conte handed out Green Flyers to New Yorkers, on two bills in the Assembly. We started calling out, "New Yorkers?", and when the hands went up, we handed them the flyer. At 10:00 am promptly, the walk began. We walked out of the monument grounds, onto the boulevard which had been closed to traffic. The cops on their motorcyles were escorting us, and the Press was following on the sidewalks. At one point, I walked up to the Press Photographer, put my poster in front of his camera and said, "Take his picture. This is Omar. He is my grandson, and he was injured by Vaccines'. The camera-man stopped, the reporter stopped, and in the next instant, I was being interviewed. "How old is he? When was he diagnosed? Are you angry? etc etc." And then I waved goodbye and ran over to join my team. In my haste, I didn't ask which network they were covering - darn it!

We then stopped by in front of the HHS building and protests rang out. We turned our poster boards to face the building and stood there, protesting. It was exhilarating! A 1.3 mile later, we turned in towards the Capital grounds, and the dome, looming above the green pastures, and thousands of us filing into the grounds, was a breathtaking view. All these parents and grandparents had made it there, took time off, drove and flew long distances, and were there to make a statement for their children. A stage had been set up and the rally began. It had gotten hot and the volunteers were giving out water bottles. Umbrellas brought for the rain, now shielded us from the sun.The first speakers were physicians, one of them from the American Academy of Pediatrics, all in support of cleaning the vaccines, and customizing their administration to the needs of the child, more intervals, etc. Robert Kennedy Jr. spoke at length, and addressing the Press he challenged them on their handling of the vaccine issue. He said to them that each time a piece of research comes out, you (the press) ask CDC for their opinion; you should be reviewing the research and drawing your own conclusions; its not rocket science. He then took each research material, relayed the spin that the CDC had given, and laid out the facts, setting the record straight. Jim Carrey in my opinion, gave the best performance. I call it a performance because it takes star quality sometimes to package an issue. His appeal was factual and emotional. He said that our children are messengers, are special, and their message to us is to make us change agents and clean the world. They were brought here for a reason. Through them we have learnt to love; they have brought a unique gift to us, and it is our calling to open these gifts and share them. Jenny was the last speaker, and she was herself all the way. She always inspires. This time, her speech was scripted, but it was moving nevertheless. At the end, she asked us all to hold up the photos of our children for the Press to see, and as all hands went up, with the photos of children smiling down on us, the music played, and I cried.

And then it was over. It almost felt anti-climatic. It felt like unfinished business. I wanted to hold on to the moment, relish it, cry a little more, and just sit there on the grass, enveloping the feeling. But we had to re-group, assemble, find our bus, so we got into action. Amy and Mary were to join us on the bus on the return trip.

Lisa Rudley, God bless her, and gone off to see her congresswoman with a few others. We made calls, rounded everyone up, hailed our bus, and piled in. Then we made a few rounds in the bus until Lisa and company caught up with us. Then we were off.

Lunch boxes popped open, and we were munching and chatting. People were talking about the rally, about the bills in the Assembly, about the bus trip to Albany next week, about their experiences with Autism, and the bus was buzzing. Lisa filled us in on her conversation with her legislator, and something she said, made me think, "Legislation is as important as Treatment".

When we got to NJ, we were beat. Lisa asked the bus driver to pull into a rest area and it was like heaven, to take a break. I just happened to glance up on the TV screen in the rest area, and there it was, or rather, there we were, "Green Our Vaccines Rally". I yelled out to all the others. They were all lined up in front of Starbucks. None of us had had our coffee that day. Those who caught my eye, I didn't know their names. So I yelled, "Rally, On TV," and pointed up to the TV. By the time a few ran up, the moment was gone.

By this time, I wasn't looking forward to a bus ride all the way to White Plains. We were planning to take the train back to New York from White Plains. Mary and Amy miraculously came up with Plan B. They are so practical and innovative. Two ladies sitting next to them offered to drive us in their mini-van from the NJ drop off point at exit 8A to the New Brunswick Train station. We could then ride straight into Penn Station. Bless them! There were 4 of us, Tom, Amy, Mary and me. So we got off at South Brunswick, said our goodbyes, and drove off to N.Brunswick. It was a long drive and for them to have taken us out of their way was very very nice of them. I was watching the clock. There was a train at 6pm and the next one at 6:41. If we could catch the 6pm, that would be great. We made it to the station at 5:45 and then we raced up the steps, up the escalator, to the machines. $10.50. Must be wrong. Over to the counter. $10.50 Got our tickets, and then the announcement came. "We apologize......6:15". No problem, at least its not a drive to White Plains. The train got us into Penn Station at 7:30, and it was 'goodbye' and 'see you' and 'get home safe'. I took the cross-town bus and walked in at 8:00 pm.

Khalid was waiting, wanted to know all about the rally. My daughter-in-law called, wanted to know all about the rally. Now I am at work, talking to everyone about the rally, and not getting any work done. Emails are coming in, thank you to the organizer emails, Thank you for coming emails, Norene volunteering for Program Committee email, Nancy wanting to move on with the Events Committee email, bills to support emails, bills to oppose emails........

Our work has just begun.

NAA-NYC Chapter Organizing Meeting

February 27, 2008

The first chapter meeting was held on this day. Over 40 people, from all parts of New York, including Long Island, Westchester and Rockland County attended.

This was an organizing and networking meeting. The Chapter's approval by NAA was announced, the approved Mission, Bylaws, and Initiatives 2008 were circulated, the slate for officers was presented and accepted, and five committees were constituted. These are: Membership, Program, Website, Parent Mentoring, Parent Resource Guide, and Events Committee.