Archive | August 2012

Gentically Modified Oranisms (GMOs)

I mostly shop at Whole Foods, Trader Joes and Costco now, only organic.  When I do go to Safeway for something, I look in other people’s shopping carts and look at all the processed, GMO c-r-a-p.  Of course, everyone has a choice and right to buy whatever they wish, but at least we should know how our food was processed.  The US is one of the last countries not required to label GMO food.    Take a look:

I posted awhile back about Robyn O’Brien (http://www.robynobrien.com):

You’d be shocked to know how many of your favorite brands (even organic) are supporting Monsanto and the desire keep GMO hidden from us consumers.  Pretty sickening.

On November 6, 2012, vote YES on Prop 37.  We deserve to know what we are eating.

Sensory Blog Post:Thinking Moms

Love these ideas for a sensory room.  Jackson has a lot of sensory needs, and while we do have a lot of sensory seeking toys, a sensory room for Jackson may be in our future.

Meeting Sensory Needs On A Budget

I have a sensory seeker, which means I have a kid who loves to move and groove. She loves to jump, swing, run, body check me, be squeezed–anything that provides input to her body, she craves. When she was a toddler, she would run around the house clutching an object in each hand and hum a very low guttural hum. It took me quite some time to realize that she did that because the vibration she could feel in her chest from that particular tone felt good to her.

Prior to getting the autism diagnosis, we were told she had a sensory processing disorder. Knowing absolutely nothing about that, I turned to the internet to research how we could help. I came across the SPD Foundation which had a great search tool to find providers. We hooked up with a wonderful OT who helped us understand the type of input that our daughter needed. She craved vestibular (the sense of movement centered in the inner ear) and proprioceptive (sensations from joints, muscles and connective tissues that lead to body awareness) input. While working with this OT, we rapidly understood that we were going to have to make quite a few changes in our home in order to meet her sensory needs. We had plenty of incentive, as we saw that with the right input, she looked absolutely blissful. In fact, she would even stop humming (or should it be called grumming? I mean it was a groan/hum combo after all).

Initially we were given recommendations to peruse websites dedicated to pediatric occupational and physical therapy needs. Have you ever seen those sites? I’m sure you have.  They are amazing with very cool equipment that you have to rob a bank in order to buy. In less than twenty minutes the only thought in my head was “not going to happen.”

That didn’t exactly stop me. I mean, come on, I’m an autism mom- if we balked at every hurdle we’d never get anywhere in this recovery game. A little creativity sprinkled with some flexibility goes a long way. Because I’m guessing that I’m not the only one in to be in this situation, I thought I’d share some of the things we have done over time that might give you some ideas for your own homes.

The first step was really getting a grasp on what she truly craved and needed: interesting textures and funky surfaces to walk on, things to bounce on/with, pressure and, of course, movement-up, down, sideways and around.

Now, my initial thought was to construct some kind of sensory room. And we did do that. BUT we started this part when she was really young, so unless I wanted to live in that room and get absolutely nothing else accomplished in my day, I was going to have to find things that could meet sensory needs in multiple rooms in our house. Preferably things that did not require a whole bunch of moving from room to room (okay so maybe I’m a little lazy).

The main places to look for affordable things: Craig’s List, FreeCycle, Walmart, Target, Amazon and any sales at Toys R Us.

The very first thing I found  cost $15 on Craig’s List. Check it out; it’s a Hedstrom Playset.

Fun, right? Slide, place to climb, little swing. Perfect sensory stimulation. Guess where we put it.

Yep, that would be my kitchen. We moved our table up against a wall, got some colorful interlocking mats on sale at Sam’s Club and and plopped this $15 wonder down in the middle of the floor.  Annoying? Well, I guess that would depend on your attitude. We thought it was brilliant. I could do all of the things I needed to do in the kitchen, while she was in there with me meeting a multitude of her sensory needs.  Total win-win!

The next thing I focused on was a ball pit. Every good sensory house, I mean room, needs a ball pit (or two), right?  All of the ones I’d seen were quite pricey. In fact, even today when I’m talking to people they all balk at the price for a ball pit. It really doesn’t need to break the bank. We’ve done a couple over the course of the past few years.

When she was little this inflatable kiddie pool that I picked up on sale for $5 really did the trick. Add to it a $9.99 bag of balls and…well, check her out.  She’s pretty comfy hanging out in it in our living room.

In fact, she liked it so much that she guarded it rather fiercely:

And we liked it so much that we got a smaller version for her bedroom.

Okay, so maybe the red one needed more balls in it. But she was pretty content with it nonetheless, and I was content to not have to drag the green one from room to room. Another win-win!

As she has grown, so has her ball pit. We wanted something bigger that would accommodate more balls and hopefully some friends. This larger ball pit was going to live in her sensory room that we put together in our basement. We chose a Jumpolene that we got on sale at Amazon. It was an immediate hit with her.

Thankfully it was also an immediate hit with friends (and a great incentive for play dates!)

Even the older friends.

See those two beauties up there? Those are Mama Mac’s kids. Even their dog got in and frolicked with them at one point.  Happy kid, happy friends, happy parents who can have a conversation while their kids are all playing safely! Win-Win-Win!!

Want to be really creative? Ever wonder what to do on those off months of mHBOT?

Just kidding!

My next step was to address bouncing! Come on, who doesn’t love to bounce?

The obvious first choice was a mini trampoline. A fair number of people give these away on FreeCycle. We opted to put it down in the sensory room with an egg crate pad underneath. The egg crate pad was a donation from a family member. It made for an interesting surface to walk on and provided a little extra padding should she slip off.

A Hippity Hop bouncer is another bouncing option. Again check FreeCycle first, but you can get them pretty inexpensively if you can’t find one there.

If balancing on the ball and bouncing is an issue, they now make a Rody (but don’t be fooled, they do tip over!)

If your child is small enough, believe it or not, a $1 punch- balloon from the local mall does the trick. They can also carry it from room to room themselves. Score! She’s four here:

One word of caution about the $1 punch-balloons. Avoid letting your child bounce on it in the store. There are little rocks on the floor that will pop it, causing some poor guy in the shoe aisle to hit the floor. Oops! Yes, that really happened. <blush>

In addition to all important bouncing…there is crashing, crawling, moving and springing on a funky surface. It turns out that it’s super easy and cheap to make your own “crash pad” “moon walk” or “foam bed”  simply by filling a duvet cover with scraps of foam that you can get from almost any furniture or upholstering store for free. Just call and ask them if you can pick up a bag of their scrap foam for your child’s occupational therapy at home.

You can use scraps of any size from large to small. The only thing that matters is your preference of surfaces. The large blocks make great crash pads, while the smaller scraps make better “moon walks.”

If you can’t find an upholstering store to donate to you, you can advertise on your local FreeCycle or order it from a place like foambymail.com. I highly recommend the free route for obvious reasons!

 

I also learned to not overlook things that were already in the house.  If you have removable couch cushions, they make a great unpredicatable surface to walk on…or a nice place to sit and bounce with a snack.

Speaking of interesting surfaces? See that gray mat under her feet? It’s actually from a pet store. Its “real” purpose is to clean the cat litter off of little paws rather than letting it get all over your house. It feels much like soft tickly grass and it was a texture that my daughter loved to stand and sit on.  It was far more affordable than some of the options I saw at some expensive therapy stores.

Another interesting surface with an auditory kick is bubble wrap. Any friends who come over will love to get in on the game of jumping, dancing and hopping in piles of bubble wrap!

Ask some of your local moving companies to donate some to you. Call them and explain to them that you have a child with SPD or Autism and tell them what you need it for. Many companies will gladly donate some to you!  You can also ask family members and friends to save theirs for you. If you want to buy it, Staples and any packaging store will always have some in stock.

If you want to purchase funky surfaces, you can always buy sensory stones from Amazon or look for them on Craig’s List. There are many different types. Here are a couple of examples:

 Sometimes it is easy to get caught up in what you can put in the room that something simple like gluten free finger paint might be overlooked, but it provides a great deal of sensory input and fun.

 I like purchasing from Discount School Supply  because their kit comes with sponges and sensory balls, and they sell those amazing large rolls of paper, too! We tear off a big piece and tape it to the floor. It truly provides lots of fun!

As your child matures you will find yourself replacing various things in your house and sensory room, so don’t forget to recycle when you can.  Our green ball pit’s second ring popped, but it made a great moon sand holder later on. You can see her in the remnants of moon sand in it here. You can find Moon Sand in bulk for much less than you’ll ever find it in a store. A 5 lb bag is around $15…or you can simply go to your regular Lowe’s or Home Depot and buy some sandbox sand for even less money.

 Speaking of sand. I quickly realized that these fun sand/water tables that provide so much joy in the summer time can easily be cleaned and moved inside in the wintertime.

While you are planning your own sensory filled environment for your child, don’t overlook the very simple and free, yet fun-packed activities like swinging them under the arms, riding down the hall in a laundry basket, jumping on a bed, two people grabbing four corners of a blanket and swinging the child, and playing catch with a giant therapy ball (the impact is SO much fun! You are guaranteed to get squeals of absolute delight!)

 

Over the past few years, our daughter’s sensory room has grown and changed right along with her as you can see.

 

The bucket swing was replaced by a band swing, The miniature ball pit grew to a larger one, the PlayHut and tunnels come and go (thankfully they are easily stored) The Sit-n-Spin was replaced with musical instruments. The interestingly textured egg crate that was under the trampoline has disintegrated…but many things remain

The trampoline, ball pit, bean bag and swing are constants. The opposite side of the room now holds a slide, bicycle, wagon and shelving to store puzzles, paint and craft supplies.

One thing we have noticed for sure. The more relaxed, creative and flexible we are, the more relaxed, creative and flexible she is.

Now… How do you meet your child’s sensory needs? What are some of your favorite things to do?

Happy moving and grooving!!

~Money

This entry was posted on August 26, 2012. 1 Comment

No More Paci!

Some recent changes in Jackson:

1.  Disinterest in his pacifier.  The past few days, I noticed he would put his paci in and then take it out and throw it on the floor.  Today, he went the whole day without it and went to sleep fine without it.  At this point, I’m tossing all the spare pacifiers into the trash and watching my big boy grow up.

2.  Jackson also hasn’t been wanting to nap these past few days.  He makes it through the day just fine and gets sleepy around 7:30pm and goes to bed nicely.

3.  Today is the first time I’ve seen (and I wish I had taken a picture/video of it) Jackson playing ball with our dog, Nala.  Nala dropped the ball for Jackson, and Jackson picked it up and threw it for Nala, and the pattern continued.  Jackson got so excited and kept throwing the ball for Nala at least 10 times.  He was so happy, following Nala with excitement.

4.  I think I wrote something about this earlier, but Jackson has gotten really good with the iPad.  If I take him to the movie section, he can scroll up and down and touch the movie he wants to play it.  There’s this 5 minute Disney movie called Presto that he loves to watch over and over.  If I put the iPad away to charge, Jackson will go take it off the charger and bring it to me.

5.  Jackson will know a toy he wants and know where to go get it, whether it be the playroom, his room or the living room.  His awareness of his environment seems to be expanding.

What are these small (but huge in my eyes) changes due to?  The HBOT, we’re at 39 dives?  The Homeopathy remedies?  Camel’s milk?  Osteopath treatments?

We shall see…forward we go, I’m excited to see what other changes are in Jackson’s near future:)

This entry was posted on August 26, 2012. 1 Comment

Update!!

It’s been over a week, but we’re still here, alive and kicking.  I’ve just been so busy with teaching and all that comes with the beginning of school plus Sophie starting Kindergarten plus Jackson’s IEP and continued ABA therapy plus Hyperbaric Oxygen Therapy plus going back to the LLMD/DAN doctor plus dealing with our mold problem.  Geez, where do I start?

All I have to say is, thank goodness I’m only teaching 50% (Mondays, Tuesdays and every other Wednesday).  I finally had a chance on Thursday to catch my breath, sit in on Jackson’s therapy, make some phone calls, grocery shop, and have some playtime with Sophie and Jackson.  Sophie transitioned into Kindergarten wonderfully.  She is a PM Kindergartener, so she goes to the Clubhouse before (and sometimes after) school.  Thank goodness Sophie is my easy, mellow, go-with-the-flow girl so that my radar can point focus on Jackson.  Don’t feel sorry for Sophie…she gets her fair share of horsie play time.

Jackson, Jackson, Jackson.  Since I left you last, we were in full “go after the virus” mode.  After not responding to the Valtrex now Famvir, and meeting with our LLMD, we’ve decided to take a 6-8 month break with the Lyme/virus/medication/supplement treatment and forge ahead with Homeopathy.  Now, Jackson alternates daily between two remedies, continues with the mb12 injections, B Complex, Vitamin D, Vitamin C probiotics, fish oil and Zinc Picolinate.  We have another appointment with our Homeopath on Friday, Sept 7th to see if we need to tweak the remedy.  Jackson has also completed four appointments with an Osteopath in Portola Valley who does hands on manipulations on Jackson’s head and stomach.

We still have our rented HBOT until September 6th and are on our 37th “dive.”  Each dive is at least an hour, so it’s been a big time commitment.

Have I seen changes?  Nothing drastic, but yes.  Jackson is much more present and communicates by leading me to where he wants to go, bringing desired objects to me and saying /g/ for go.  When presented with movie choices on the iPad, he can touch the movie he wants and touches it to start.  He is overall more present and communicative.

At the moment, Jackson is continuing his 4 hours of at home ABA therapy while we’re in the middle of his IEP.  We’re going to observe two preschools next week and meeting back with the district on September 5th.  The first county preschool program they suggested for Jackson was an extreme sight to see, with students with severe  behavior problems, down syndrome, in this tiny classroom that we were not comfortable with.  I’ll report more about our IEP experiences later in another post because it’s a long, complicated process, ending up being much more involved than I anticipated.  We’re not going to settle for just any program for Jackson.  It’s got to be right in all areas, and should we have to drag the process on and get advocates and lawyers to represent us, so be it.

Mold…Our house was remodeled six years ago when we moved in.  How can our house have a mold problem?  The mold expert we brought in and Misha believe that before the remodel, there was severe water damage and mold.  During the remodel, some of the mold probably fell under the house into the crawl space and was not disposed of properly.  To the naked eye, the crawl space is dry and perfect as an be, but after further inspection by Misha, he found what appeared to be mold, and it was confirmed mold from our mold consultant.  Five thousand dollars later, we just had our crawl space sealed off plus negative air pressure (I don’t know all the technicalities of what they did down there…the mold is Misha’s department).  Hopefully, the mold problem is now taken care of.  In a month or two, we’ll do another ERMI mold test to see if our high mold number goes down.

.

We’re continuing on, still believing recovery for Jackson is possible.  We’ve hit our share of roadblocks, detours and potholes, but my focus is still helping Jackson.  Is it Lyme Disease?  Is it vaccine damage?  Is it a virus?  Possibly all of the above.  I am so excited about our current road trip with Homeopathy.  If you don’t know anything about Homeopathy, I highly suggest reading Amy Lansky’s book, ‘The Impossible Cure.’  I just learned about it a few months ago, and it makes sense to me…treating the whole body and the root problem rather than masking the symptoms with medication.  I’ll do my best to keep updating, but know that we’re still here, fighting every day for Jackson.

“Sh*t Autism Moms Say,” from TMR

http://www.thinkingmomsrevolution.com

Sh*t Autism Moms Say…

OMG, he totally needs to be chelated!

I’m in yeast hell.

Did he poop? How did it look? Yellow or brown? Solid? Was it solid-solid or like soft-serve ice cream??

Do you do TMG or DMG?

I’m so psyched! My supplement order is coming today!

I’m thinking about re-organizing my supplement cabinet.

Have you tried melatonin? Have you tried GABA?  Have you tried 5-HTP?

There’s soy and gluten in this.  Garbage.

(Yells from the bathroom) “Honey, did you give the 11:00 dose?”

How much OT, PT, ST andABAdid you get in your IEP… 20 minutes… Me too… Schools don’t get it.

Did his labs come back??? Let’s meet for coffee.  I’m DYING to hear about his amino acid panel…

Thank God! My kid is recovered. <TWITCH-STIM-MOUTH>

OMG, DO NOT TOUCH THAT FRENCH FRY! THERE ARE PESITICDES AND FUNGICIDES ON IT, AND THE OIL IS GENETICALLY MODIFIED!

‎Holy shit! The guests will be here any minute! HIDE ALL THE SUPPLEMENTS!

Did you use the French lab?

{{on phone}} “No, sorry girl. I can’t meet you at Whole Foods today. My shipment of Camel Milk is coming and I don’t want it to sit on the porch.”

You know… the French pee test? No I don’t know how to spell it.

Good morning. My son will be late for school this morning because he has been up since 2 AM and just fell back to sleep.  I will bring him to school around noon.

We have the HBOT in our bedroom, and my walk-in closet looks like a drug dealer’s:  IV supplies, supplements…

‎OMG, if I have to hear that fuckingHollandpoem one more time I am going to hurt someone.

Oh I totally hate Autism Speaks too!

Dr. Wakefield is SO hot.

‎”I can’t wait for vacation this year. Nothing like warm weather.” “Oh! Where are you going?” “To Rossignol with a stop over at Frye’s. It’s going to be fucking awesome!”

No hands in pants!

Waiter! There’s a piece of gluten in my soup!

Yes, I am sorry. We ordered that hamburger with no bun. Yes, JUST the hamburger patty.

Yes, us too! We are GFCFSFEF, artificial free and mostly SCD.”

‎Yes, I’ll be off Facebook in a second.

Facebook is important!

Can I get pharmaceutical grade Epsom salt by the truckload? I have room for a salt pile in the backyard, and buying in bulk is just so much easier.

Do you get that compounded?

Just wash off the blue coating first before you give it.

I was being stalked by a cardinal and it led me to CEASE. HA.

I finally organized supplement times, and it only took 30 Excel sheets.

Biomed pickup lines:  “Baby, you have nice veins.”  “Hey baby, let’s go back to my place and do some compounding.”  “Baby, you’re so hot, you must be breaking out a virus!”

Flu shot?? I’d rather chew on a mercury thermometer…

‎”Are you going to AO?” “Are you going to NAA?” “Are you going to the DAN conference?”

Are you friends with Amy on FB? She’s a virus expert.

‎Oh!! You’re soooo nice! Would you like be our fecal donor?

Woohoo!!! A detox rash!!!!!

UGH. Brian Deer is such an asshole!

No you can’t have Lucky Charms. Blue is not a food group.

I am detecting notes of clostridia, with a yeasty finish.

If this HBOT’s a rocking, don’t come a knocking.

 

OK Guys, what else have you got to add to our list?

Powerful Blog Post From TMR’s, ‘The Rev’

They Say

They say high-pitched screams, fevers and swelling at the injection site are all common, harmless, insignificant side-effects of responsible, preventative medical care.

Don’t listen.

They say kids get sick all time. Antibiotics are harmless.  Even if they are needed 5 to 10 times before a child’s second birthday.

Don’t listen.

They say strange, bright yellow, grainy and frequent stools (up to 20 a day) are common in small children.  It’s called toddler diarrhea.

Don’t listen.

They say lots of little kids get constipated.  It happens all the time. They have something to help. You find yourself giving that something to your child every day.  They say not to worry, she’ll grow out of it.

Don’t listen.

They say it’s just genetics.  The luck of the draw.

Don’t listen.

You say you think your child may be in pain.  They say he is not.

Don’t listen.

They say eczema is very common in babies. They outgrow it.

Don’t listen.

They say his head is bigger than it should be for his age, but no need to be concerned.

Don’t listen.

They say–

Boys develop slower than girls.

Speech comes late in the second, third, fourth…

Speech comes later in boys than girls.

Some kids are late bloomers.

Kids develop at different rates.

You probably let the older sibling speak for her.

Don’t listen.

They say SIDS–a word assigned to the unexplained death of an otherwise healthy child–has no explanation, no known cause. They say this even when a child receives preventative healthcare just day,even hours,before their death.

Don’t listen.

They say dietary interventions (SCD, Weston Price, Feingold, GF/CF/HFCS/Soy free) are old wives tales.

They say DAN doctors are shy-locks.

They say chiropractors aren’t real doctors.

They say homeopathic intervention and CEASE therapy is witch-doctoring.

Don’t listen.

They say that every child is a candidate for immunization regardless of what is known about their genetic predisposition to developing asthma, allergies, autism or auto-immune disease.

Don’t listen.

They say mast cells, cytokines, oxidative stress, immune function, viral load, metabolic and methylation dysfunction have nothing to do with the brain disorder they call autism.

Don’t listen.

They say pills will help calm a sick child’s constant hyperactivity (and give you a much needed break).  They say they will have to up the dosage frequently because bouts of violence are quite common when the pills lose their effectiveness. They say you’ll want to keep on top of the prescription(s) especially since the pills suppress the neurological signals that indicate when the child is full, so by the time she reaches puberty your violent child with brain and central nervous system damage will also be struggling with obesity. Not to worry, they say. They have a pill for that, too.

Don’t listen.

They assure you all preventative healthcare measures are safe.  They say, “Nothing to worry about, mom.  We know what we are doing. Side effects are rare. One in a million.”  That’s what they say.

Please. Don’t listen.

Thinking moms and dads understand the great comfort built into the word “rare.” We were the enthusiastic parents that took great comfort in the “one in a million” statistic our pediatricians provided as their nurses swabbed our babies’ arms and legs to stick them 4 times with 9 different diseases that have never been tested for combined efficacy. “Rare” helped us lay our heads on our pillows at night and sleep peacefully.  A baby, yes. Maybe two or three.  But, more than likely, somebody else’s baby. Unless of course, it is your “rare one.” Hundreds of thousands of thinking moms and dads parent “the rare ones,” in the United States alone. Those of us who are lucky enough to still have our children; our chronically-ill, immune-compromised, viral-overloaded, central nervous system-damaged, brain-damaged, bowel-diseased, heavy metal-poisoned children.

With all the talk of rarity, one would think these few martyrs of the CDC’s vaccine schedule would have their lives publically honored on a yearly basis. Great charities benefitting chronically ill children would be founded in their names. Their families would be held in the highest regard, their sacrifice acknowledged, their stories told.  Matt Lauer, Oprah and Andersen Cooper would be clamoring for a chance to interview these rare families and capture their real story of ultimate sacrifice for the global village. Celebrities of the highest caste would entertain us during elaborate, televised galas on a national holiday commemorating their lives. If what they say is true, this would be the case. Doctors and scientists from all over the world would come together to talk about the strange and unheard of phenomena that occurred in the bodies of the few who gave their lives for the world herd.  Their findings, after analyzing these rare deaths/chronic illnesses would be highly respected, critically acclaimed, published in the most notable journals, discussed thoroughly among the most prestigious members of government, medicine and science.  Indeed that is what would happen. 

If what they say is true.  

They would not deny these sick and dead children ever existed, would they?  They would not pretend it never happened.  They would not ignore the studies that prove their parents’ claims. They would not vilify, demonize and systematically pick off the doctors that are actually helping and healing these kids (the ones that live). They wouldn’t continue to produce the food that is exacerbating the damage done.  They wouldn’t insist on maintaining the schedule. Would they?

Please, LISTEN.

America ranks 38th in the world for childhood mortality rates.  More babies in Poland and Czechoslovakia live to celebrate their 5th year of life, than in America.  We are the most vaccinated and chronically ill population in the world (rivaled only by the UK).  Thinking Parents know what is happening to our country and to our world.  We read the studies, we read the legislation.  We read MSD sheets, food labels and package inserts. We investigate what we are told.  We investigate the science, the politics, the law. We talk to researchers all over the world.  We network with each other.  We find solutions. Autism is an auto-immune disorder that often has iatrogenic roots.

According to the media, there is no science that supports the autism-vaccine link.  In 1954, there was no science to support the notion that smoking caused cancer, because those in power actively suppressed the efforts of those trying to uncover the truth. The media then, like the media now, had bills to pay and advertisers to please. Silver-haired doctors graced the covers of magazines smoking their favorite brand of cigarette.  But adults, even under the haze of addiction, have the faculties to choose to or choose not to smoke.  A baby only hours old cannot decide whether or not he would like a vaccine that is meant for prostitutes and IV drug users.  A vaccine that wears off before he or she even becomes sexually active.  A newborn cannot decide that. Please read Ian’s story here.

When the people in power stop listening to the people they serve, the most unfortunate and despicable events in human history repeat themselves.

Saddest of all?  Autism is just the beginning.

We are begging you.  LISTEN.

 

~ The Rev

* For more blogs by The Rev, please click here

Homeopathy/Autism Documentaries

I can’t wait for these Homeopathy documentaries come out.  Amazing stuff going on, I’ve become a believer.

From Within, Without:

Saving a Lost Generation: