My heart broke the other day, actually…it recracked on a fissure that I had spackled over. I was interviewing the mom of a recovered child and she was talking about the day she got the “A Word” diagnosis. She said “It was like hearing my son was dead, but there he was right there in front of me. Just dead on the inside.” It took the wind out of me. It’s been over 2 years since Jake was diagnosed and I’ve buried all the pain down so far…I forgot how devastating that moment is. To this day, I can’t let myself fully go there. With death you can grieve and move on…with Autism, there is no down time. You can’t lose it, because you have to stay strong. You have no choice but to deal (although a padded room may have been in order had I let myself really “feel” it).

But if there is anything I can tell any parent who has recently had their child diagnosed…YOU CAN TREAT AUTISM!!! Not everyone can acheive full recovery…we’re not there yet, but Jake talks a blue streak (sometimes repetitive but, hey…come on!), he has friends, we can go to restaurants again, he sleeps, he doesn’t bang his head or have wild tantrums anymore. It can get better…so much better. I had even forgotten how bad it was until I started doing all these interviews. YOU CAN CHANGE THIS. Find out more, talk to a DAN! Doctor, go to GenerationRescue.com. You can reverse the symptoms…your child is not dead on the inside.

My son who had about 4 words at 3 said to me today, “Mom, when Tristan sleeps over, he’s going to sleep on the Bob the Builder bed and I’m going to sleep on the plain red one, right?” That’s right Jake, that’s right.

Don’t accept autism…fight it. You can get your child back.

Okay…I know this is a recurring theme with me, but the media has recently latched onto the idea that high functioning spectrum kids are very offended by terms like Defeat Autism Now, and the fact that parents are trying to reverse the symptoms of autism.

Here is the deal, if my son had been diagnosed with high functioning aspergers at 3 yrs old, I probably wouldn’t be typing this on my own website about autism right now. I would have thought, “Oh, he’s going to be a lot like Poppy.” My dad, who is an engineer, a math wiz and someone who really enjoys the parts of things (as well as the whole, but REALLY likes the parts). And life would have gone on, unless he was physically ill like my son was at 3, if so I surely would’ve addressed that. (My son had withered away to skin and bones, had huge rings under his eyes, no muscle tone, had major gross motor skill issues and so on.)

BUT, my son was diagnosed with moderate autism. The regional center psychologist said he may never have any meaningful speech, he may never be potty trained, he may need to be institutionalized and some really hard core things that I’m sure were not said to a mom of a kid with high functioning aspergers – were not talking socially awkward and “little professor” here. We’re talking MAJOR DISABILITY. “Prepare yourself to never hear I love you.” “You are going to have to make plans to care for him after your death.” “He may never get married.” Were the types of things that were often discussed during this diagnosis period. Pretty sure your meetings were different.

High functioning Aspergers and Autism are not the same thing. One end of this spectrum is very mild, the other end is debilitating. It’s a bell curve my friends and you are on the far left. Most of us hover somewhere in the middle and some at the far right.

So please don’t take offense to our desire to give our children the best chance possible at enjoying their life. It’s not fair. My son has made amazing improvements where he can now enjoy things – going anywhere used to be an assault on his senses – and now we can go to places like Magic Mountain and ride the rides and he loves it. 2 years ago, we wouldn’t have made it through the chaos of the front gate with out a full on meltdown.

Maybe we could meet somewhere in the middle, because I totally understand how one could take offense to this desire to squelch something that is considered a part of who they are. I’d like to pick your brains a bit to find out what you know so you can help us help our kids communicate, learn and enjoy life. I want our kids to get to the place where you are.
Elynn
:)

*******************

Posted by QueenDustBunny

I totally agree.  I don’t want to change my kiddo’s uniqueness.  I just want his body to function better.  I want him to still be who he is, just without all the extremes that kids/people with autism are prone to.

Okay…so I watched Autism Every Day on Friday. You can watch it by going here: http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

Here are my thoughts…although I’m glad people are finally giving autism the attention it deserves and it’s my understanding that the point of this film is to raise research money… great. I also think it’s beneficial for the world to understand autism so they can stop staring at us like we’re bad parents. But I also think this film is one of the biggest downers I’ve ever seen. Had I seen this film 3 years ago, I would have curled up on the floor and wanted to die.

Fortunately, my Friday AM started with my son’s behaviorist spending a good 15 minutes talking about how he’s a different child from when she started as his school shadow in September. How he now shows a full range of emotions, a sense of humor, seeks out other kids socially..etc, etc. It was a good day in the land of autism.

Thank God, because if I had watched this film on a bad day…it would’ve floored me. It has the potential to take the wind out from beneath your wings.

Autism Every Day never mentions anything about hope…nothing about the things you can do to turn the tables on autism. Yes, having a child on the spectrum is really, really tough and yes…Jake used to bang his head and twist his hands like the one little boy in the film and yes…he used to run away full speed and scare the crap out of me until I was afraid to go anywhere, and yes my marriage fell apart and I’ve spent all my $ on treatments, but guess what…he’s getting better. A lot better. And I know he’s going to go to college and have a career and get married. I wasn’t sure 3 years ago and I really don’t want to relive those feelings. It broke my heart into a thousand peices and I’m still scared, but not anywhere near hopeless. Quite the contrary actually. I have a child I interact with every single day. He has a crush on a girl. He speaks in full, interesting, amusing sentences and paragraphs.

Sure, he still punches his own head when he gets really mad and sure he likes to give things a good spin every once in a while, but I’d be happy to show a documentary filmmaker some of the old footage of Jake at his worst and then have him interview us now. Now that’s a movie we parents need to see.

So instead of wallowing in hopelessness, I’ll be attending the Autism One conference in Chicago this weekend. Where, I’ll be filming a lot of the footage for the Reverse Autism Starter Kit and learning as much as I can about the latest cutting edge treatments.

Autism Every Day is important, it’s critical that the world at large understands what we go through every day, but what’s more important is understanding there are things you can do to reverse the symptoms. It’s not hopeless…take as much time as you need to feel sorry for yourself (hey, I do it too!), then shake it off and press on. Don’t settle…fight it!

:)

Elynn

Researchers at the National Institutes of Health have found a correlation between an ingredient found in shampoos and nervous system damage. The experiments were conducted with the brain cells of rats and they show that contact with this ingredient called methylisothiazoline, or MIT, causes neurological damage.

Which products contain this chemical compound MIT? Head and Shoulders, Suave, Clairol and Pantene Hair Conditioner all contain this ingredient. Researchers are concerned that exposure to this chemical by pregnant women could put their fetus at risk for abnormal brain development. In other people, exposure could also be a factor in the development of Alzheimer’s disease and other nervous system disorders.

The chemical causes these effects by preventing communication between neurons. Essentially, it slows the networking of neurons, and since the nervous system and brain function on a system of neural networks, the slowing of this network will suppress and impair the normal function of the brain and nervous system.

FULL STORY HERE: http://health.benabraham.com/html/your_shampoo_has_bad_toxins.html

Antibacterial soaps Unsafe?

University of California, Davis. In three separate studies, the researchers showed that the chemicals — triclosan and triclocarban — have potential to affect sex hormones and interfere with the nervous system.

an Chang, PhD, a professor of environmental engineering at U.C. Davis and one of the researchers involved, says he doesn’t want to cause a panic, but “the public should be aware of some of the concerns.”
http://www.medicinenet.com/script/main/art.asp?articlekey=89871

Toxic Products/Nontoxic Alternatives

Here is an interesting link to a site that lists the most common products we use in our homes everyday, the unhealthy toxins in those products and a long list of healthy alternatives.
http://chemicalxxx.tripod.com/id3.html

Non-Stick Coatings Contain PFOA

Bottom line…the safest bet is to go back to cast iron pans. I think I’ve seen some cool pots and pans in Whole Foods.
http://www.seventhgeneration.com/learn/blog/chemical-keeps-keepin

Meet Your Meat…See What You Are Eating… Ew!

I’ve been eating organic meats ever since I saw this video. I think you’ll see why!!!
http://www.petatv.com/tvpopup/video.asp?video=mym2002

My Favorite Non-Toxic Housecleaning Products
Tips from Terri

Our kids on the autistic spectrum are extremely sensitive to environmental toxins of all kinds, so it’s very important for them (and the rest of us, too!) to try to make our household environment as non-toxic as possible. I wanted to share the products I’ve found that I like best to use in my own house for cleaning and personal care. I’ve tried to give a link where you can at least see a picture of each product, but I don’t know the sources very well, as I buy all of these things at my local health food or grocery stores.

PERSONAL CARE PRODUCTS

Hand and Body Soap
Dr. Bronner’s Peppermint Soap – Pay no attention to the ‘wacko’ sounding stuff on the label, this liquid handsoap is just great to use, washes off easily and sudses up nicely. I get the best deal by buying it by the gallon, and pouring it into small bottles in each bathroom (sink and shower), and in the kitchen. It’s a liquid castille soap, made with organic oils. Comes in other scents, including lavender and tea tree. We tried the tea tree, for the extra antibacterial qualities, but didn’t like the way it smelled.
http://www.drbronner.com/

Toothpaste
Xyliwhite, by Now Products – This is a great tasting toothpaste (minty but not very sweet or strong) that I just found last month. Haven’t gotten my son to use it yet, but working on it (he likes his awful green watermelon-flavored sparkly stuff too much!). What I love about Xyliwhite is that it is fluoride-free, and contains no lauryl sulfate. The ingredients, including Xylitol and Tea Tree, are pretty non-toxic and supposed to be very effective at helping with oral health.
http://www.iherb.com/xyliwhite.html

Shampoo
Trader Joes “Spa” shampoo

Deodorant

Tom’s various deodorants – Each of us seems to like a different one, but there are quite a few to choose from. These are free of aluminum, and less nasty than mainstream deodorants, but still contain propylene glycol (antifreeze). I’d love to find something even less toxic, but it’s gotta work, and so far, this is the best I’ve found.

Skin Cream and Lotion

Nature’s Body Beautiful is a company that sells Bentonite clay, which is used for detoxification through the skin. All of their products contain the clay. The way I found the company is through the clay, but the products of theirs that I’ve kept using are their skin creams, which are very ‘clean’, and come without any fragrance. I use their Miracle Rejuvenation Face Cream and their Nature’s Body Souffle on my face, and their Nature’s Body Lotion as a more general hand cream type thing.
http://www.naturesbodybeautiful.com/nbb_products.htm

Lice
I hate lice!! We haven’t had them for a long time, but I sure did hate when we did. Here’s my lice cure: get some tea tree oil shampoo and tea tree oil – most healthfood stores sell these – and start using the shampoo on everyone in the house. Soak brushes/combs in hot water with teatree oil in it. Change and wash everyone’s pillowcase daily, other sheets at least a couple times a week in hot water. Put all blankets through the wash once when you find out you’ve got lice, and weekly after that until they’re gone.

Get a Licemeister comb (yeah, I’m not kidding, this is *THE* comb – worth every penny!!!) and comb everyone, twice a day. http://www.headlice.org/licemeister/
That’s it. I think this works better than Rid or that other chemical poison ever did. It may take a week or two for them to be gone, but it always did anyway, for us.

CLEANING PRODUCTS

Cleanser

Bon Ami – Mom was right, this Comet-alternative is much less toxic and works great. Available at grocery stores.

Laundry Soap

Seventh Generation free & clear – Free of all perfumes and dyes, no petrochemicals or bleach, and seems to work great. Ingredients: coconut-based surfactants, glycerin, non-animal derived enzymes, borax, socium gluconate, salt, less than .05% preservative, water. I get it at my healthfood store, or at some supermarkets.
http://www.realgoods.com/shop/shop2.cfm/dp/208/ts/1052730

Hand Dishwashing Soap

Seventh Generation Free and Clear Natural Dish Liquid – Free of perfumes and dyes, vegetable-based rather than petroleum based, so it’s nice to the environment. I like it just great for hand dishwashing. I get this at my healthfood store.
http://www.realgoods.com/shop/shop2.cfm/dp/203/ts/1052761

Machine Dishwashing Soap

Ecover dishwashing tablets — I just found these and I really like them! They’re these big pill things, each in it’s little package. You just unwrap one and put it in the silverware tray, and voila, that’s it. They’re phosphate and chlorine free, and seem to do a great job on my dishes. I’m not a bigtime dish rinser who washes that dishes before putting them in, and it gets my Fiestaware and even plastic cups nice and clean. They do say to make sure to use Rinse Aid, but I haven’t and no problem so far.
http://www.ediblenature.com/ecover.html

Getting Sticky stuff off things

Citrasolv – This is a concentrated citrus stuff, that works great when used straight, for removing gummy/sticky stuff.
http://www.realgoods.com/shop/shop2.cfm/dp/208/ts/1054141

Mopping
I often use some Dr. Bronner’s soap, plus a little citrasolv, in my mop water. Still experimenting.

Carpet cleaning

Stanley Steemer – This is a carpet-cleaning service, that comes to your house and cleans your carpets, using a hot-water extraction method. They use a soap very similar to laundry detergent, and extract dirt with hot water, and strong suction equipment, so the carpet is fairly dry when they’re done. I actually bought a carpet cleaning machine, but use Stanley Steemer instead because they get the floor cleaner and dryer than I can, and because their equipment is so much better, they end up using a smaller amount of soap to clean it than my home machine does. I think that the fact that the carpet is pretty dry quickly helps to keep mold from growing in it, which I also like. It does cost some money, but hey, it’s also way easier than doing it myself!

Spray Cleaner

Ecover Glass and Surface Cleaner – works great, vegetable-based, very non-toxic and nice to use.

Ants
Boric Acid – This is a very inexpensive powder you can buy at the drugstore. Don’t put it on food-prep surfaces, but sprinkle on window sills, and where you think Ants are coming in and it will help. Ants eat it and it dries out their lungs (ick), but it’s not poisonous to humans.

Orange-guard – This is a citrus-based insect killer. Kills ants when you spray it on them but not all that effective if they come by later.
http://www.orangeguard.com/
Cinnamon – I don’t use, but a childcare center I know swears by spreading liberal amounts of cinnamon where ants like to come into the building, to make them stay away – I guess they don’t like the smell of it. You can buy big cheap containers of cinnamon at Costco.
(I still use a single spray of Raid into the spot where ants are coming in, and ant stakes outside sometimes, strategically, as little as absolutely needed, as a last resort)

A note about Bleach and Chlorine:
Just FYI, chlorine is a HUGE blocker to sulfation and detoxification function in the body. Sulfation (along with methylation) is critical for the production of glutathione and for the body to be able to detoxify itself. These are the things that are messed up so often in our kids. So it would benefit us greatly to keep our children as far from chlorine as possible. Do what you can to avoid using much bleach around your house for cleaning. There may not be good alternatives for cleaning the toilets or bleaching white clothes or truly awful germridden tasks, but for almost everything else, see what you can do to make other products work for you if possible.

Oh, and definitely stick the kids in an epsom salts bath and/or rinse them in the shower then put on epsom salts cream (Kirkman sells one) when they get back from the swimming pool!

Bye for now!
Terri

Posted by Nancy

Here is a letter I sent to close friends and family to tell them about our son’s autism – perhaps it will give some of you ideas as well.

Wyatt’s Race

Last May our son Wyatt was diagnosed with high functioning Autism Spectrum Disorder, a growing epidemic that affects as many as 1 in 166 children. Autism is a devastating biological and neurological disorder that can affect individuals in the areas of communication, social skills, behaviors and medical problems. If untreated, the condition continues to regress or get worse.  After going through the stages of grief (Denial, Anger, Bargaining, Depression and Acceptance) we began forging ahead with our efforts in healing and recovering our son.

I was lucky enough to get to the DAN! (Defeat Autism Now) conference last October and was awakened to the potential for recovery after hearing some of the top medical doctors and scientists from across the country that are specializing in science based effective treatments for Autistic children. Biomedical autism intervention is the knowledge that autism spectrum disorders are a biological condition that includes genetic susceptibilities, environmental toxins, immune dysfunction, and nutritional imbalances as causative factors in the autistic condition.
We are working with two doctors that are international leaders in the field, a pediatrician here in LA (I found his address on the internet and he ends up living two houses up from us) — and a brilliant neuromolecular psychiatrist and yogi named Andrew Levinson (right up my spiritual seeking alley) in Miami. Read, Wyatt and I are going to Miami for an Autism conference at his clinic in two weeks to learn more.

We are the lucky ones, in fact, because we can afford to see these doctors. Many of the children that Wyatt goes to school don’t have parents that have time to research, buy the medications, and do the special diets required for recovery. They are too busy worrying about their own survival.

We are also doing behavioral therapies that have been shown to be effective. Because they are exorbitantly expensive and require funding I am now by necessity becoming an expert in the areas of special education law and advocacy. We have begun funding them ourselves and hired an advocate/attorney to assist us obtaining some benefits from the state. The programs are demanding, requiring parent training and home involvement.

The next year is crucial because the earlier the intervention the more hopeful the outcome, due to the neuroplasticity of the brain when a child is under the age of five.

We are already seeing improvement with Wyatt in the last few months – less tantrums, more language, increased eye contact and less hyperactivity. Our specialists say that we can work toward and even anticipate having him in a mainstream educational program one day.

Read brought me home a production handbook that he had inscribed with the title “Wyatt’s Race” complete with a graphic of a racer at the starting block to keep track of important files. Dr. Levinson says the race we are running “is a marathon, not a sprint.” It’s not going to be easy and we are going to have to make a lot of sacrifices and lifestyle changes. We are going to run it with all the strength we have and know that with the support of family and friends we will reach the finish line.

Hopefully this will help explain why I may not answer emails or phone calls right away, or why we may be busier than ever in the months to come. I could write volumes more on the experience, and fortunately for me Christina Adams has already written a book entitled “A REAL BOY” that could be our story , if you are interested in finding out  more. Wyatt is still our beautiful little boy and the greatest thing that ever happened to us — no regrets.

I realize that all of you have your share of challenges as well,
and I wish you courage in dealing with whatever you may be facing in this life.

Love,

Nancy

Please take a moment to introduce yourself…

You probably already know my story. My son Jake just turned 5 on Saturday. He was officially diagnosed at 3, but looking back, he started slipping away at about 18 months or so. Lost his speech and eye contact, ear infections, antibioitics. Your basic nightmare.

We’re currently working with DAN! doctor Nancy Mullan in Burbank, CA and follow the GFCF diet, have a supplement regimen, do B-12 shots every other day and TD-DMPS every other day. We also keep the house as toxin free as possible by using green cleansers.

Jake has come a long, long, long way since we first started suspecting autism. He’s totally verbal now, lost all of his OT issues, is socializing with kids his age (this time last year, he didn’t know it was his birthday…yesterday he insisted his friends get out of the bouncy house because he wanted to do the birthday cake now). We’re not out of the woods yet, but I have all the faith in the world that we’ll keep reversing the symptoms and I’m really optimistic about where we’ll be on his 6th birthday.

And you???

I used to be kind of embarrassed about the diagnosis. I think it goes back to the refrigerator mom thing. Don’t be!! I don’t care anymore because as the symtoms start diminishing…you know it’s not hopeless and it gives you the strength you need to be brave.

Talk to your friends, talk to your teachers. I still get a little wierd when it comes to the mom’s from Jakes “regular” school…I worry that they’re going to look at him differently or say something to their kids. But really…I’m not sure they haven’t figured it out on their own anyway.

Top people to contact:

1.) Your public school district…whether or not you have diagnosis, they will assess your child and you’ll most likely get services.

2.) Your Regional Center (or whatever it is called in other states – someone help me out here)

3.) Us!! I know it’s pretty much just me here now, but I see more guest reading these posts every day. Join me and we can figure this all out together.

4.) Seek out a DAN! Doctor or a pediatrician familiar with the biomedical treatments available for autism.

Even when you already know, the day you get the diagnosis is rough. I hate labels and I had a thousand fears that Jake wasn’t going to be looked at like a boy any more, but an autistic boy. I still have that fear. As parents of spectrum kids, I think that’s one of our biggest bonds…the dreaded stigma.

I encourage you to start looking into the GFCF diet, supplements and switching to toxin free home products right away. The Reverse Autism starter kit will be available in June. In that kit, I’ll be interviewing doctors and experts in those 3 areas. Plus, it will give you the exact steps you need to get started…including a 30 day supply of Brainchild Vitamin and Mineral formulas (created by a Dad with 2 kids now testing off of the spectrum). Until then, take a look at generationrescue.com. It talks a lot about biomedically treating autism and the steps you should consider. We’re going to be rolling out a series of DVDs covering the various treatment options and how to use them…but please don’t wait. There are things you can start now.

Things you can do RIGHT NOW…

- Start adding Epsom Salts to your child’s bath. They help to pull toxins from the body.
- Pick up some Nordic Naturals Children’s DHA. They’re pretty tasty and are like brain food.
- Look into DMG and TMG. Jake did better with DMG. You can get little sugary “melt-aways” by CountryLife. Jake actually likes them and I felt his eye contact improved within days of starting it.

I’m a little sleepy. I’ll add more to this forum in the next few days. Feel free to ask any questions.

:)

If your child has just been diagnosed, or know something is wrong and don’t know what to do…here are some steps to get you rolling.

1.) Contact your local public school system. Let them know your situation and that you want to have your child evaluated.

2.) Buy the book called “Children With Starving Brains” by Jaqueline McCandless. Read it.

3.) Take a look at www.GenerationRescue.com. It will help you navigate through the biomedical treatments for autism.

4.) Buy the Reverse Autism Starter Kit (available June ‘06) it will help you get rolling – and start reversing the symptoms of autism – as you figure out your bigger game plan. (Ex: finding a DAN doc, therapies, chelation, etc).

5.) Find other parents in the same boat…it will help you to keep your chin up. Whether that be through these forums, or finding a support group in your area. There is safety in numbers.

Always remember there is hope. Autism is not a disease…there are things you can do to reverse the symptoms!!