Matthew's Puzzle

Gevalia Kaffe Giveaway!

2012-02-11T08:51:00.002-05:00

We LOVE coffee in our house. In fact, we have a standing joke that says you know you are part of this family if you sat on your grandma's lap taking sips of her coffee going "mmm". We have all done it, and my boys are exactly the same, they always want sips of our coffee!

I received two bags of Gevalia coffee to do a very formal taste test. Seriously, very formal. The first was a bag of the Gevalia House Blend, a medium/dark roast. We found it to be very smooth, with no noticeable acidity, which I liked. My husband found it to be a little too light for him, so the next day I made a pot of the French Roast (dark). We both enjoyed this blend very much. Some French roasts can be bitter, acidic and one very popular brand always tastes burnt to us. But the Gevalia brand was extremely pleasant and flavorful without those less desirable traits. Because we both enjoyed the French Roast so much I began mixing the two so that the House Blend had a little more punch. This was a great mix and would be amazing if used in cold brewing iced coffee.

Both bags we received were ground although whole beans are offered in some blends. Gevalia, available at Safeway, comes in 8 varieties.

Traditional Roast
House Blend
House Blend Decaf
French Roast
Columbia
Espresso Roast
Vanilla
Chocolate Mocha

Kraft would like to offer one of my readers a prize pack containing one (1) sample of the House Blend from Gevalia Kaffe, one (1) sample of the French Roast from Gevalia Kaffe and a Gevalia Kaffe branded coffee mug, just like I received.

To enter, simply leave me a comment sharing the Gevalia you most wish to try, or your favorite way to drink your cup of Gevalia. Please leave your email address so I may contact you if you win. For an additional entry tweet this contest and paste a copy of the tweet in the comments below.

The contest will run from February 11, 2012 to 11:59:59 February 25, 2012. One winner will be chosen at random, using a random number generator. The winner will be notified by email and will have 48 hours to claim the prize. If I have not heard from the winner within 48 hours a new winner will be selected. To qualify you must make a meaningful comment. MyBlogSpark requires the winner to provide their shipping address and phone number - DO NOT PUT THEM IN THE COMMENT AREA. I WILL CONTACT THE WINNER FOR THIS INFORMATION. PUTTING YOUR ADDRESS AND/OR PHONE NUMBER IN THE COMMENTS IS DANGEROUS AND YOUR ENTRY WILL BE DELETED.

To learn more about Gevalia Kaffe please visit Gevalia here.

Or visit Gevalia on Facebook here.

Disclosure:

Kraft Foods, through MyBlogSpark, has provided sample product to me and is providing the prizes for this program at no cost to me. This program is not administered or sponsored by Kraft Foods or its affiliates, but solely by Matthew's Puzzle.

Prizes to be supplied by Kraft:

(1) sample of the House Blend from Gevalia Kaffe
(1) sample of the French Roast Blend from Gevalia Kaffe
A Gevalia Kaffe branded coffee mug

Love Heals and GR

2012-02-09T08:47:00.002-05:00

Photo from Love Heals

All month long you have a unique opportunity to help Generation Rescue by simply going to Love Heals' Facebook site and "liking" them! For every new "like" Love Heals receives during the month of February they will donate $0.25 to Generation Rescue! I've "liked" them already, why don't you?!

But the love doesn't stop there. If you "like" them you will be entered into a month long contest to win Love Heals Hope Collection Jewelry, autographed books by Jenny McCarthy and more! All you gotta do is "like" them, easy peasy.

While you're at it take a look at their Hope Collection, and for every website sale from the Hope Collection, Love Heals will donate 50% to Generation Rescue. In case you're interested I'm digging the Evoke Hope Turquoise bracelet. Just saying.

So with one simple click you help out my favorite charity, Generation Rescue, you get a chance to win beautiful prizes and get to know a generous retailer of beautiful jewelry! Not bad for one simple "like".

Wordless Wednesday - the Tissue Fetish

2012-02-07T19:41:00.000-05:00

What our youngest thinks is a good idea to do with our tissues. All our tissues!

A Social Kid that Isn't Social

2012-02-07T07:38:00.001-05:00

If you read my recent piece on yeast you may remember me mentioning that the boys take swimming lessons, and that I talk to a few other special needs parents in the waiting area. Well, this week was no different. I was speaking with the father of a non-verbal autistic child right around Matthew's age. We were discussing the differences in the way people perceive our kids. His child exhibits a lot of the "typical" autism traits, he is non-verbal, will not look at you, seems to be "spaced-out", have many repetitive body movements, an unusual gait, etc. Whereas Matthew has lost many of those traits. He is extremely verbal. We joke that he starts talking the moment he gets up in the morning and doesn't stop until he falls asleep at night. He will look at you we speaking to you. Sometimes his eyes seem a little "dead", but very often, especially if he is discussing something he loves, his whole face lights up and he is completely present. He rarely seems spaced- out any more. He still has trouble focusing and staying on task, but he used to actually seem drugged or lost behind his eyes. This does not happen any more. Matthew does have a few self Stimulatory behaviors such as hand flapping and he will contort his mouth into an O shape when very excited. But these are no longer extremely pronounced unless he is overstimulated or excited. Even his walk has evened out. He no longer slaps his feet down when he walks. Overall he looks very normal. And this can cause a different set of problems.

The father of the other child told me "You have a social kid that isn't social." and he was exactly right. Matthew really looks like all the other children. He doesn't have many physical characteristics that hint at his autism. He has a strong desire to interact with his peers, and often they have good conversations. But just as often he describes his trips to the playground as time when he wanders off and plays with the rocks or dirt on his own. He can be difficult to engage. Staying on task can be nearly impossible, especially if he is overstimulated. He can appear lazy, defiant, like "the class clown". And all these things can make interacting with him frustrating and difficult. He tries your patience because he doesn't respond like you expect him to respond.

Lately he has really taken to the Legos PS3 Star Wars game, and all we hear are questions about the game. "Which character do you like better?", "What is your favorite light saber color?", "If I were a Jedi which color light saber do you think I would want?", over and over again. It really can drive a sane person crazy.

I think we are in a new place. A place I don't understand yet. We know where he needs help, but getting it isn't always easy. The school doesn't help because they say it doesn't effect his academics and that is all they need to worry about. But it does effect his ability to use that knowledge in a meaningful way, day to day, in real life.

Ah, well, we carry on and travel this new path until it splits again. Stay well.

Autism Recovery: Autism Doesn't Kill

2012-02-06T08:06:00.002-05:00

I was recently poking around Twi tter and found another Warrior Mom over at SockitMama. She was discussing the recent police involved shooting of Stephon Watts, a 15 year old from Calumet City, IL with Aspergers Syndrome. The boy was shot to death by officers after he cornered them in his home where they had been called by his parents. The police had been called before for his aggressive behavior, he had been taser-ed before, but this time the police felt threatened enough to fire their guns. SockitMama pointed out that although the disorder of Autism may not kill, the behaviors can cause death just the same.

It got me thinking. We have all read the articles or seen the news reports about autistic individuals wandering away from their homes and dying of exposure, or drowning in nearby lakes or ponds. We have even heard of some children with ASDs being targeted by predators, or being bullied to the extreme resulting in suicides. Autism can kill.

But what else can Autism kill? I've seen it kill friendships. I know I lost some friends because of Autism. I'm not putting the blame anywhere, because friendship is a two way street, and we all know that when you take on the role of Warrior Parent you become very single-minded. It is very hard to maintain a relationship when you are on the emotional roller coaster of the recently diagnosed.

It kills hopes and dreams. When your baby is born and the doctor declares him healthy, you begin the plans. You will take him to the park, or dress her in the cutest outfits. You'll enjoy play dates, and trips to the ballpark. You'll eat ice cream in the summer and take skating lessons in the winter. You will be a normal, fun family. But then Autism rears and instead of all the family fun, you are finding therapists, muddling through alternative cookbooks, managing meltdowns, taking him to doctors and specialists and working, working, working. College becomes a very scary, almost surreal thought, replaced by IEPs and group homes.

Then there are the finances that go down the toilet. Every one of these doctors and therapists cost money. Lots and lots of money. For a little while we had been lucky and found a girl that was amazing at ABA type therapy, and she wasn't expensive at all. But she was a college student and was only around during summer vacation. PT costs money, OT costs money, DAN! Doctors cost money, so do the supplements, the specialty foods, the ABA Consultants and the ABA therapists, the Psychologists and Social Skills groups. And so very little is covered by insurance. So very little. Jenny McCarthy took a second mortgage out on her house for therapies. Many families go bankrupt treating their child(ren).

Even family dynamics take a few body blows. Kim Stagliano talked about how her daughters were not invited to her relative's wedding because of their Autism. I know we avoided family holiday gatherings because we didn't want to have to deal with the overstimulation and the questions or comments. Unless family decides to take an active role in helping you, they don't understand. Even within the immediate family things are different. Everyone is at the mercy of a meltdown or medicine schedule. Activities the other children would like are avoided to keep tantrums at bay. Favorite restaurants are pushed to the side because they no longer meet dietary restrictions. Schedules revolve around Autism therapies and appointments. Nothing is left unaffected.

Autism may not kill the child outright, but it can kill many, many things. And unfortunately, it has been known to take a life. Say a small prayer for Stephon Watts and his family. There but for the grace of God, go I.

Stay Well.

I Need a Drink

2012-02-05T06:05:00.002-05:00

If you've read any of my previous posts you may have noticed things have been pretty stressful around here lately. Just this past Friday we had to find a psychologist to help Matthew with his anger issues, focus, pretend play and social skills. It is a lot to take in, but usually Larry and I take a few days to process everything and then we are back in fighting shape. But durning those few days of processing, I sometime (OK, often), enjoy a drink or two. Usually I'll have a Saint Brendan's Irish Cream on ice, or maybe Larry will make me a mojito! He makes a fantastic mojito. But that is such a summer drink. I like something a little warmer in the winter. Over the holidays I was having a little eggnog spiked with Woodford Reserve Bourbon. Yummy, warm and spicy. But, alas, all the eggnog is gone. As is the Woodford Reserve!

Yesterday Larry tried his hand at a orange cream martini. He used Pinnacle Whipped Cream Vodka (not even remotely naturally flavored - shame on me!), orange vodka, orange juice and cream. It tasted pretty darn good. He probably needs to tweak it a little, but overall, pretty darn yummy.

I'm not a beer drinker much, but I did enjoy a white ale Larry picked up the other day. So on these cold-ish winter days what are you drinking? Any suggestions for me?

And as always, Stay Well!

Autism Recovery:TV Character

2012-02-03T08:20:00.001-05:00

I guess being autistic has now become the IT characteristic for new TV characters. But I'm going to focus on Max Braverman from Parenthood. I know a lot of people love that show, and I do TiVo it myself, but I'm pretty disappointed with how they portray Max's family life. I get the fact that this is a TV show and they don't want to show it exactly how it is because that may not be so interesting. But I gotta say there are some general inconsistencies and errors that really bug me.

They don't discover Max's autism diagnosis until he gets so overwhelmed in school that he knocks over a fish tank. Being in California, one state with an extremely large number of children on the autism spectrum, I would suspect the teachers had some knowledge of autism and what it means to be on the spectrum. Obviously this outburst was not the first he had. Also, his sister, in a later episode says she knew something was wrong because life always revolved around what Max wanted. These are not dumb people, how did they, their extended family, teachers and pediatrician not figure this out earlier? It is like his autism dropped from the heavens.
Max gets an ABA therapist and within a few sessions he can approach and engage other children. Within one school year he is ready to be mainstreamed with what appears to be no supports at all. His therapist quickly leaves and is not replaced! This just doesn't happen. Families go through years of ABA and in school therapy. They haven't given him any supports and all of a sudden he can go to class and not knock over fish tanks? Doesn't make sense. Families dealing with autism have tons of therapy and tons of therapists. Our own family has 3 out of school therapists and 4 in school therapists.
Apparently his cousin, Amber, is an autism whisperer, because she spends one week of detention with him and teaches him how to read people's facial expressions, use appropriate inflection and apologize in a manner that seems sincere. All from watching celebrities and political figures on YouTube during detention for pushing his cousin. We need her in our home, because we are still working on all of this after 4 years. Amazing!
He is brilliant! Every single autistic human being is too, if you didn't know. They are all savants. No, in reality they aren't. There is a subset of autistics that are savants, and many do have narrow, intense interests, but they all aren't math wizards like Max Braverman. They run the full range of intelligence, you just hear more about the savants.
Lastly, this isn't exactly about Max, but instead about the family, the Lessings, they turned to for additional autism support. The show made this family out to be goofs and quacks because they used the gluten free/casein free diet and were adamant about using alternative therapies to help their son. The diet does work for at least 20% of those families that try it. That is one in five according to the Johns Hopkins IAN project. That is not an insignificant amount, and the IAN Project even admits that the numbers are probably low because not everyone tries the diet. It could be higher if more used the protocol.

Stay well.

Cuban Picadillio

2012-02-02T08:27:00.002-05:00

I'm not Cuban, and I don't play one on TV! Seriously, my family is best described as Heinz 57 from Northern European countries. But the other day I was channel surfing and landed on the Food Network watching Guy Fieri on Diners, Drive-ins and Dives. I missed the name of the restaurant, but the owner was making Cuban Picadillio. It seemed simple enough, but looked delicious - often the way the most wonderful food is made, right? So I figured I'd find a recipe and make up a batch last night for dinner.

We always keep ground grass-fed beef in our freezer from our half steer we buy yearly, so I knew I had everything on hand to make this comforting and delicious dish. I found this great recipe for Cuban Picadillio here. I made a few substitutions such as using several small red and orange sweet peppers in place of the green bell peppers. I served it with jasmine white rice and fried bananas.

Fried bananas

2-4 ripe bananas, sliced on a bias, approximately 1/2 inch thick. Bananas should not be too ripe.
Coconut oil

Heat a frying pan, I like cast iron because it does not add toxins to your food like non-stick pans will. Stainless steel is also a great option. Add a tablespoon or so of coconut oil to the pan and allow it to heat over med to med-high heat. Gently place the bananas in the pan with one cut side down. Do not over crowd the pan. Work in batches. As the bananas cook they will start to change color and become slightly more yellow. You want a nice browning on the cut side, do not burn. Flip the banana, I used tongs, and continue to cook on the other side. Remove from heat when both sides have browned and the banana is cooked through. Serve with Cuban Picadillio and white rice.

Everyone enjoyed the meal, but Matthew was baffled by my response to his "What's for dinner?" I told him Cuban Picadillio and he asked "What is that?" I told him I didn't know, because I really don't know what it is. Is it a stew, a chili, what? Anyway, he kept asking me how I was going to give them dinner if I didn't know what it was. He liked it anyway. And LOVED the fried bananas. And as always this is a Gluten Free meal if you use Gluten Free Worchestershire Sauce. Lea & Perrins also makes a Worchestershire Sauce without HFCS! The meal also happens to be Casein Free, Soy Free and Egg Free.

Stay Well

Wordless Wednesday - Green Smoothie

2012-02-01T08:25:00.002-05:00

Littlest Man enjoying Mommy's Green Smoothie, which he thinks is Chocolate!

Helicopter Mom

2012-01-31T13:37:00.002-05:00

Helicopter Mom, yeah, that's me. I fully admit it, I'm one of those moms that hovers around my boys making sure everything is OK. My friend, Diane, used the term Helicopter Mom to describe just what I was doing. (She does it too.)

I don't really feel bad being one, because I know exactly where it stems from. When Matthew was younger we spent a lot of time just trying to let him have normal experiences. But, of course, he couldn't. He wouldn't, or couldn't, do what the other children did. He physically could not play on most equipment, and needed help maneuvering around, across, over, under, you get the picture. He had, and still has to some extent, poor motor planning. This means he can't figure out what his body needs to do and how to do it when trying to make his way from point A to point B (or task 1 to task 2). So I always had to be there to help him.

He also lacks in what is called pragmatic language. That means that although he had words and could label many things, he did not use his words in normal speech. He could not hold a conversation that made sense, or ask for something he needed. And although he loved other children it was beyond him to say hello, and unfathomable that he could continue with his name or some other normal next step. So I hovered, prompting him with correct words or actions. Always vigilant.

He didn't play with toys, ever. We had tons of toys given to him, hoping to engage him and pull him into our world. They never worked. If he showed interest it was to repeatedly push a button or spin a wheel. Never to pretend or use the toy appropriately. I remember him "playing" with a toy piggy bank which would play music when a toy coin was inserted in the bank slot. Matthew would, instead, stick his finger in the slot and push the button that would cause the music to play. Over and over. I would show him how to insert the coins, I'd orient his hand and help him put the coin in. As soon as I let go he would drop the coin and push the button with his finger. But there was no joy in this play. He wouldn't look at me as if to say "Yes mommy, I know, but this is fun this way." No, instead he would simply return to what he was doing with no regard to me at all.

I was never allowed to hold him. He hated being held. There were times, to simply get the pleasure of holding my child, where I exploited his disorder. We had a toy clock which both fascinated and frightened him. If I moved the hands of the clock to make it tell different times or play music, Matthew would sit in my lap and let me hold him. I did offer him some sort of comfort at those times, and I took it. I would sit on my couch as long as he would let me, maybe an hour, holding him and making the clock talk, just so that my baby was close. When he was done, he was gone. Not just off my body, but gone someplace else where I wasn't allowed to follow.

So now, as he has aged and has begun his recovery, I still find myself hovering. I check on him and his brothers to verify no one is calling him weird, and that he feels safe and sure of himself. I'll probably be a Helicopter Mom for a long time coming.

As always, Stay Well.

Got Yeast?

2012-01-30T13:04:00.002-05:00

My older two boys take swimming lessons every week, and we use a swim school with specific knowledge about special needs children called MarTar Swim School. Because of this specialization there are many other parents there who also have children with autism. And like any good group of biomedical parents our conversations often turn to yeast, yeast overgrowth and yeast killers. And of course this week was no different. One father remembered overhearing us discuss yeast and some of the side effects from yeast overgrowth and he wanted a little more information. So I thought maybe you, too, would like a quick yeast primer.

In a typical, healthy gut yeast and good bacteria live in balance with each other. But in many autistic children we find an overgrowth of yeast and a lack of good bacteria. In addition, bad bacteria may also be in an overgrowth state. This is often called dysbiosis.

So how do you tell if your child has a yeast overgrowth? It can manifest itself in both physical and behavioral ways.

Physical manifestations include:

Thrush - yeast overgrowth in the mouth
Diaper rash or eczema
Red ring around the anus
Rash or cracking between toes
Sandy or grainy textured stool
Bloated belly
Dark under eye circles

Behavioral manifestations include:

Headaches
Inappropriate laughter, especially in the middle of the night
Sleep disturbances, many night wakings
Unexplained crying
Stomach aches
Constipation
Bed wetting
Gas
Fatigue
Depression
Fogginess
In attention
Hyperactivity
Anger and Aggression
Increased Self Stimulatory behavior
High pitched squealing
Increased sensory defensiveness
Climbing/jumping off things
Sugar craving
Confusion

This is not an exhaustive list. List of most symptoms taken from the TACA Families with Autism Journey Guide vol. 1, sixth edition, revised 2010, written and distributed by TACA (Talk About Curing Autism www.tacanow.org)

When Matthew exhibits signs of yeast overgrowth we often see it manifest itself as aggression and anger. Before we knew anything about yeast, when he was only 3 years old, he would bite me for no reason. I would simply be sitting on the ground and he would, out of no where, walk over to me and bite my arms and torso. This would be unprovoked. The bites were brutal; usually hard enough to break the skin and leave bruising and marks for days. These attacks would happen multiple times a day and were often accompanied by nail scratching. For other reasons we adopted a regiment of daily probiotics and his biting stopped. We later learned that the good bacteria in the probiotic was battling the yeast and his aggression began to abate.

Testing for Yeast

There are tests to determine yeast overgrowth in the gut. Laboratories performing these tests include

You will need to check with the lab to determine which test is needed and if a doctor's request is required. They will also explain if insurance covers the testing.

How to treat the yeast overgrowth?

We have run stool tests provided by some of the labs above and it was determined that Matthew lacked good bacteria and had both bad bacteria and yeast overgrowth. Now that we have been along this journey for a while we rarely run the tests as we can typically pick up on his signs and make appropriate changes in diet and supplementation.

There are prescription medicines that kill yeast including

Nystatin
Diflucan (fluconazole)
Flagyl
Lamisil
Others

Supplements, Herbs and Holistic treatments include:

Probiotics
Colostrum
ThreeLac
Grapefruit Seed Extract (GSE)
Olive Leaf Extract
Oil of Oregano (OoO)
Garlic Extract
Pau d'Arco
UVA Uris
Biotin
Caprylic Acid

Dosing for each of the above differs per treatment and per person. It is often recommended that you start with a very low dose and increase very slowly - called low and slow, because each child reacts differently and may not be able to tolerate certain treatments.check with your ARI doctor for your child's dosing amounts and proper protocol.

As always, diet plays a big part in yeast control. Yeast love sugar and carbohydrates so limiting refined sugar and refined carbohydrates can help control yeast. There are some diets specifically designed to eliminate yeast such as the Specific Carbohydrate Diet

Lastly, when treating yeast be aware of die-off reactions. This can occur when large amounts of yeast are killed off resulting in the body having to eliminate more than it can handle. This is called Herkshimer reaction, and usually happens within the first week of treatment. There are ways to lessen the die-off reaction including administering activated charcoal, Alka Seltzer Gold ( not regular), and drinking lots of water to flush out the toxins.

As you can see, yeast really can be a beast. In fact, in the autism biomedical community, we often refer to it as the yeast beast because it really is difficult to control and can be so hard on our children.

As always, I'm not a doctor and I encourage you to speak with yours before you try any protocol described here. This article is for entertainment purposes only

Stay Well.

No One is Perfect

2012-01-28T07:10:00.003-05:00

So this is my day to admit we are not perfect eaters, and we are really showing our imperfections today. Not only are we going to a birthday party later, where the boys will consume gluten free pizza and Gluten Free chocolate cupcakes with strawberry icing. But I had nothing for breakfast. Nothing!

We had breakfast for dinner last night because I'm struggling with food again, so I didn't want to serve pancakes and sausage again this morning. And only one of the boys will eat eggs regularly. The same one that eats eggs will eat cereal, but not the others, plus I'm not a big cereal as nutrition fan so we don't keep much around. So I went digging in the freezer and dug out some Gluten Free donuts! Yes, I said donuts.

I'm hanging my head in shame, but I did give them donuts this morning. Ah, we are not perfect, but we do try.

Stay well.

Natural v Chemical

2012-01-27T14:38:00.002-05:00

When did natural become scary and chemical become safe?

This past Wednesday I did a Wordless Wednesday on raw milk and I got some interesting responses. Several people indicated that they were fearful of raw milk. At first I didn't think much of it, of course they were a little scared. I mean they have been well taught that you have to kill everything in a batch of milk for it to be safe. That is has to be pure white and homogenized. Then I started to really think about this and I became baffled. The average person is afraid of natural raw milk from healthy, well maintained cows but they don't think twice about eating artificial color, sweeteners and flavors. Nor do they worry about the beef cattle being fed corn which actually makes the animal sick and would cause the animal to die if it were not slaughtered beforehand. There are so many examples of chemically altered foods in our food supply, yet the thing people were fearing is raw milk.

Oddly, many people will actually ONLY use products made up of these chemicals. How many of us know someone that can't live with out their diet sodas? Or purchase prepackaged "health" foods full of processed ingredients and names you can't pronounce, and chemicals that fill you up but don't nourish. But people seem to feel more comfortable with that type of eating than with unadulterated milk. Shrug

I'm confused by this behavior. When did natural become something to fear while artificial became trusted and even expected. I don't know about you but I'd rather a real diamond instead of a fake.

I once heard a nutritionist say that you should imagine taking your great grandmother through the store with you and if she would not be able to identify a product, don't eat it! I thought that made a lot of sense. If great granny thought it was toothpaste and not yogurt, or if nature just doesn't make that color in food, stay away.

I know we all aren't perfect and sometimes we have to make due with what we can get. But if you become more conscious of what you are truly eating you can make better choices daily.

Stay well.

Some movies and books to look into are:

Food inc

The Omnivore's Dilemma

What I Wish You Knew About Autism

2012-01-26T07:33:00.001-05:00

There is a book out there called Ten Things Every Child With Autism Wished You Knew! But this is my list, as the mom of a child with autism, for what I wished you knew.

1. I don't know one parent of a child with autism that went out seeking this diagnosis. Not one of us wanted these "free" services. We would gladly turn in all our special education, physical therapy, occupational therapy, speech therapy, applied behavioral analysis and respite care hours we have accumulated to have a normally developing child. It is insensitive of anyone to think we would seek out this diagnosis to freeload off the school system. Our children will carry this label throughout their school career. They will be opened to teasing and brutality. They will struggle with simply activities you and your child take for granted. Just because some news outlet tells you that autism is the diagnosis du jour do not assume this to be true, because as a parent of a child with autism I pray daily that this disorder will be lifted from my son and that we will be left to deal with those mundane daily items everyone else finds so daunting.

2. If you haven't done the research don't presume to understand the disorder. Autism is extremely complex and as our children age, grow and develop, so does the disorder. It is not like diabetes where it has one set of problems that remain relatively consistent throughout the person's life. Instead it is multifaceted, has a full spectrum of affliction, comes with many co-morbid diseases and changes as the child changes. We have had autism in our lives for 6 years. During that time I have read and researched quite a bit, and yet there are many aspects of autism which I don't understand. If your knowledge of autism comes from a one hour TV program do not think you understand the disease better than we do.

3. Keeping number 2. in mind, don't presume to know more than the parents. I'm sure you are well meaning, even if you come across as harsh and uncaring, but we the parents really, truly know best. Especially those of us who have studied the different problems children with autism face. They have sensory processing disorder, executive function problems and issues with Theory of Mind. And if these words are not commonplace to you, then before you determine just how poorly we control our children you should Google those terms and familiarize yourself with what struggles our children face daily. Because their bodies and minds are bombarded with sensations they are not equipped to handle. They are not misbehaving, obstinate or cruel, they have autism.

4. Our children deserve the love and respect given to every other person out there. They are human beings. And as we have seen in our own family, these children are alive inside what we once thought was their own world. And they are watching, learning and remembering. Do not assume because they don't speak, or they won't look you in the eye, that they are not present, that you can dismiss them and assume they are furniture in the room. A person with autism has the capability to understand and process all that you put before them, so make sure what you put before them is what you want them to know about you. Treat them with dignity and respect and you will be surprised by the sheer capacity of their minds.

5. The stress of autism is overwhelming at times. It is a constant current that run through every aspect of our lives. Even as our children improve we have no idea of what the future holds. In our home we must plan two lives for Matthew, the one the doctors tell us he will have and the one we hope he will achieve. One requires provisions for a person who can not support them self while the other requires planning for college and other endeavors. We must assume both. We want every normal thing for Matthew, but we must work to ensure that he can do the simple tasks others take for granted. It may seem trivial to you, or simple, yet you don't have the responsibility we have. So before you judge, step into our shoes, walk around, look at all the small details you may not notice from the outside.

6. Yes they may tantrum or melt down, but realize that typically their bodies and minds are overstimulated by what our bodies find to be normal, dismissible input. For whatever reason, their bodies can not process the sensory stimulation it is constantly bombarded with and often they lash out or melt down due to these inputs you and I would not think twice of. An example would be the flickering of florescent lights. A normally operating fluorescent light has a line flicker which is not perceptible to average humans, but it is noted that those with autism can notice and become disturbed by such a flicker. Their bodies perceive and process this input differently.

This certainly is not an exhaustive list, but it is a list of things I wish you knew.

Stay well.

Wordless Wednesdays- Raw Milk!

2012-01-25T07:39:00.001-05:00

A friend of mine made a Raw Milk run on Monday and dropped off these beautiful bottles full of Raw Milk, Raw Cream and pastured brown eggs. Yummy and healthy.

Can you see the cream line on this one? Yeah, I'm frunchy!

Stay Well

Valentines Day Cricut Cards

2012-01-23T12:43:00.002-05:00

I have been dying to be more creative and crafty lately. I used to do a lot of artsy stuff but after having the boys I just couldn't find the time, or the energy, to be creative. Last year Larry found me a Cricut personal machine at a good price and ever since I've been itching to try it out. I finally decided I'd try it out by making the boy's valentines day cards for school.

I played around with a few cartridges and a few ideas, finally settling on a popsicle and the words "So Cool" on the outside of the card. I wanted something simple and cute without being too valentine-y. Yeah, that is a word, I'm sure of it. I decided to leave the inside blank to allow for plenty of signature space since Matthew's fine motor skills make writing difficult for him. I chose papers from the Paper Company in Cool Mint and Ice Cream Social colors, and the Popsicle is from the Simply Charmed cartridge while the letters came from the Gorge and Basic Shapes cartridge.

I had a great time learning my machine and playing with all the beautiful papers. Since I'm such a novice I'm sure my cards are pretty simple, but I'm really proud of them. I know the children in the boy's classes will probably not think twice about the cards, but it was a great respite for me. I even made the invitations to Matthew's birthday party. Now I'm thinking of making a "Happy Birthday" banner. I bought the Boys will be Boys cartridge on sale a few weeks ago and I think that might make a really cute banner.

What I Hope You Never Experience

2012-01-22T08:28:00.003-05:00

Today was hard. Really hard. Our son got so angry with us, over something as simple as not getting his way, that he grabbed a knife and said he wanted to kill his dad. He has no idea what it means. When we finally got him calmed down I tried to explain what his words and threats meant. That killing someone means they will no longer be there, that they will cease to exist. That, if his father were to die, he would not be back the next day or even the next week. Matthew had not understood what he had said, but after I explained he simply cried. Of course he didn't want his father to be gone.

But this anger and inability to control himself are becoming daily events. If he does not get his way he immediately goes to his very angry place. It saddens me and it frightens me for his future. How do we teach him to control himself? Our normally developing children can be punished and they learn the connection. But more importantly they understand the universal rules we all live by in society and ultimately they learn to abide by these rules without being specifically taught them. But Matthew is different. His brain simply does not work the same. He does not understand to the same degree so teaching him how to be a successful person in society takes a lot more finesse, understanding and many different strategies.

When Matthew was a baby he had hypotonia (he still has it, but not to the same degree), which is low muscle tone. This low muscle tone made it impossible for him to hold his head up, to sit up without supporting his trunk with his arms, to crawl and to walk. It even made nursing impossible as he couldn't latch and suck for very long. When the Physical Therapist from Infants and Toddlers ( the birth to 3 group which is nationally funded and available to everyone through their state or county) came to work with him she showed us ways to help him strengthen his neck muscles so that he would want to hold his head up and so that he could be successful at doing so. She had me use our exercise ball and lay him faced own over the top of it. While supporting him, I was to gently roll the ball forward which would force his head, neck and part of his chest off the front of the ball. He would be forced to try to keep his head up. In that way he slowly strengthened his neck muscles and eventually they became strong enough to support his head. We did lots and lots of these small muscle building activities and exercises. Every time I changed his diaper I was told to make him grip my fingers ( hoping to increase hand strength) and to gently pull him to the sitting position. Again this would force his neck muscles to strengthen and stabilize until he got to the point where he could hold his head erect. Then we would move on to core strength. Every simple goal was broken down into minute detail and we would have to teach him these little details. I never would have figured this out without our Physical Therapist.

Now Matthew needs these social rules explained and broken down for him. Then we need to teach and re-teach these skills, at the most basic level. I know I am unprepared for teaching these minute details; I have no training, I don't know the different techniques. It is daunting and it makes me feel like a failure, even when I know I am not, because everyone can teach their child how to be kind and how to follow those universal laws., but I can't. I need help.

This is not his fault, it is simply part of his disorder. But it is so hard to understand and comprehend. Often we will feel as if he doesn't care for us or doesn't love us, because of his harsh words and actions. But in reality he simply doesn't have the ability to control himself. It would be as if he were asked to write his name but he didn't have a pencil or paper when everyone else does. He simply isn't capable because he doesn't have the tools, and instead of him being able to go buy those implements he would be required to go out and make them from the things he finds around him. It is slow going and he falls behind. But it is a skill we must teach him. We simply must.

Stay well.

Stranger Danger

2012-01-21T14:37:00.003-05:00

The past few weeks have left many parents in our area on high alert. The schools have sent emails detailing several incidents where a man in a car has approached a lone child asking for assistance, offering candy and offering rides. Each time, the elementary school child has identified the situation as uncomfortable and they have done the correct thing by running away and alerting an adult who in turn has notified police.

This is a very scary situation for any parent, but is extremely frightening to parents of autistic children who often have trouble discussing and understanding hypothetical situation. Matthew is very verbal and has been extremely interested in discussing Stranger Danger with us. It just so happens it had been a topic in school recently, so this has been on his mind even before the incidents began.

He has been asking me to tell him stories of children in situations and what they could do to stay safe. These were sort of social stories I would make up on the spot. But each time he would insist on the "bad guy" being caught my the police or other adult before something bad could happen to the child. This becomes a slippery slope for autistic children because they do take things so literally. We were afraid that he would begin to believe all bad situations would automatically correct themselves and all children in those situations would ultimately be safe. So I told him the story of Pete and Sam. They met online even when Pete's mom told him he wasn't allowed to talk to people he didn't know on the Internet. Pete and Sam shared a love of Star Wars and were excited for the new 3D release. They made plan to meet at Sam's house and go see the movie together. Sam told Pete not to tell his mom he was going over Sam's house but to tell her he was hanging out with his best friend Kara. Pete lied and road his bike to Sam's house. When he arrived Sam's "dad" let him in, and Pete never came home. I didn't tell him what happened to Pete, but that Sam's "dad" had lied to him on line and had pretended to be Sam. How he had told Pete to lie and to not tell his mom his plans. Matthew understood but wanted to know if Pete's mom looked for him. I told him of course she looked. She called the police and looked for him every day. But she thought he went to Kara's house and she didn't know anything about Sam. I told him she was very sad and cried. Matthew, being my sensitive soul, broke down into tears for the mother. I didn't want to upset him, but he has to understand that things don't always turn out for the best. That the police are not super heroes and that bad people don't wear a sign saying they are bad.

We discussed the email from the school and we talk about how bad people will lie to children, and that each child has to be vigilant and aware. Pedophiles rely on children's inate trust, which autistic children have in spades, and on a child being singled out and left alone. Again, an autism trait.

Talk to your child's teachers and therapists for help in reinforcing the importance of stranger danger. Role play and tell social stories. Discuss what the child could have done better, or where they made mistakes. Tell your child they can talk to you about anything, that you may not like the behavior but that you will always love them.

Stay well.

Purple Friday in BMore

2012-01-20T10:20:00.002-05:00

If you didn't know today is Purple Friday in all of Maryland. The Raven's will be playing the New England Patriots in Foxborough this weekend and everybody in Maryland is excited. They have painted Ravens heads all over town, our local library and grocery store are even sporting them. The grocery stores have gone so crazy they even installed one of those humongous blowup football players normally used as lawn displays, right on top of their salad bar.

The schools encourage the children to wear their purple (Raven colors are purple, black and gold) to school and you can see the staff durning drop off all decked out in their Ravens finest.

Today Matthew wore his Ray Rice shirt to school. I was hoping to have him wear a long sleeved shirt underneath, but no way. "Mom, I want to be like all my friends. They don't wear shirts underneath." Fine. Although I'm not quite sure I believe him. But what the heck, if he is aware and interested in what his friends think, I'm all for it.

So are you wearing your Raven's Purple today?

Stay Well.

Mook Muffins

2012-01-19T15:58:00.002-05:00

Our middle son, Nico, suggested the name Mook Muffins. Why? Who knows. He liked the name. I was looking for other breakfast options for the boys and was having a very difficult time finding something I felt good about giving them. They LOVE GF pancakes but I just can't feed them that every single morning. Plus, it is a lot of refined carbs. Not to say Mook Muffins aren't, because they are, but I'm still trying. I bought a package of King Arthur's Gluten Free Muffin Mix at our local organic market, MOM's.

Instead of simply following the directions, because you all know I can't do that, I decided to try adding some nutrition to the prepackaged mix. The mix calls for 3 eggs, I opted for 4, figuring I would be adding some additional protein to the muffins. I also opted to add yogurt instead of milk, and a good 1/2 cup of puréed butternut squash. You could also use pumpkin or cooked sweet potato. I've done all of them with great results. I also added a little pumpkin pie spice from Frontier, and some chopped pecans. I use my kitchen shears, put the pecans in a cups and simply "snip" them into smaller pieces. Then, to give in to the boys, I add some good quality dark chocolate. The additional liquids means a longer bake time, so watch your muffins closely. I also always use unbleached cupcake lines and a great pampered chef stoneware muffin pan. This way there is no aluminum leeching into the muffins.

You could add other items depending on your child's likes and dislikes. I've done grated carrots and dried fruits such as raisins or prunes, I've added chia or flax seeds - but I don't know if baking changes any of their nutritional qualities. We never use processed oils, but choose either butter or coconut oil for our baked goods. They are healthier fats according to the Weston A. Price Foundation, which is a nutritional group that suggests traditional foods instead of processed items.

Of course, as I said before, these muffins aren't perfect since they do contain refined flours, but the kids love them. I know I have upped the nutritional content to some degree and they are served with more protein and some fruit. This morning the kids even drank some of my homemade kombucha. We aren't perfect eaters, yet, but it is my goal to improve each and every day. I hope you find this to be a useful method of adding nutrition to foods. You can sneak more veggies and fruit, fiber or protein into the foods you will already be eating. Of couse this should never be your families primary way of getting their fruits and veggies, but why not let it supplement the way you already eat and give them a little more nutritious punch with every bite?

Stay Well

Kombucha and Ginger Ale

2012-01-15T11:58:00.000-05:00

Last weekend I picked up my very first SCOBY, symbiotic culture of bacteria and yeast, or a kombucha starter mushroom. It isn't really a mushroom at all, but somehow it was named that. It is really a very simple procedure to make kombucha, which is really fermented tea. You must have the SCOBY which contains the bacteria and yeast which creates the fermentation. I got mine from an acquaintance. As you brew batches of kombucha new SCOBYs grow and you can pass them on to friends and family memebers.

Kombucha is an ancient drink believed to be very helpful with repopulating good bacteria in the gut. It is quite simple to make as long as you have the SCOBY. All you need to complete the fermentation is some freshly brewed black or green tea, sugar, a clean container and a tea towel to cover the container. I used the recipe in Nourishing Traditions, but you can search the Internet for all sort of recipes. It is also possible to purchase a SCOBY online at reputable kombucha sites.

I also started a ginger ale fermentation. This recipe also came from Nourishing Traditions and only have a few day fermentation cycle. Instead of using a SCOBY, it relies on whey drained from commercial yogurt. I'm so excited because I just tasted the finished product and it is fantastic. Wow. I never had homemade ginger ale, but I'm certainly a convert. Again this fermentation is supposed to be good for overall gut health and is used more as a tonic than a drink. It is recommended that you mix the ginger ale with some sparkling water for a refreshing tonic.

Maybe you'd consider adding some fermented drinks to your daily life. Stay well.

Typical Doctor

2012-01-12T19:10:00.000-05:00

This is my post to complain about allopathic doctors, I.e. Western medicine doctors. Let me start by saying I don't mean every allopathic doctor out there, but I do mean a vast majority of them, and actually one in particular.

Our neurotypical middle son has been have problems passing stool. And in our home pooping is very important, as we found when trying to recover Matthew from autism. He wasn't eating much and he wasn't growing much either, and he was exhibiting stool withholding practices. So we had to take him to a pediatric GI specialist. Since we can, we chose some one affiliated with Johns Hopkins Hospital, thinking she would have the most experience and the greatest ability to help. She was not willing to discuss any options other than Miralax. She insisted it was the only way to help him and when I questioned other methods she simply would not hear them. I reluctantly agreeded to try the Miralax, but as soon as he began to show improvements I began to decrease the dosage. I do not believe it is healthy or natural for a child of 4 to be on a chemical to help him move his bowels; a natural and essential process.

Immediately he began to have problems again. He no longer was trying to withhold his stool, instead he was actively potting, but he was having problems. I turned to my biomedical community and the first thing I heard was this was a sign of liver congestions. Since we use BioRay's Liver Life for Matthew we conveniently have it in the house. I began offering him small amounts of Liver Life every morning and added a very good quality broad spectrum probiotic and Culturelle nightly. He began to pass stool regularly, and has continued to improve since then.

Today we had the follow up appointment and the doctor obviously did not agree with my changes to her prescription. She wanted to know why I reduced the Miralax. I tried to remain calm and explain that Miralax is a chemical I don't feel comfortable with and that it is simply addressing a symptom of his problem but not the root. Her answer was that his issue is functional not medical and therefore there is nothing wrong with him, he just needs a chemical to help him do what nature had intended for all of us to do. I call poop on that! There may not be a medical term she is aware of, but I'm pretty sure he has a congested liver and gut disbiosis. But the most frustrating aspect of dealing with her was her inability to help him if it did not include a drug. She didn't offer any tips such as giving him warm baths, exercising his legs to help move stool through the intestines, adding fiber or really any other ideas beyond Miralax.

It is sad that she is considered one of the best pediatric GI specialists in the area, when she has no ability to think beyond the most obvious chemical answers.

Aha Moments

2012-01-10T08:29:00.002-05:00

My aha moment

You would think that after 4 years of biomedical treatment, three doctors and tons of reading I might realize why my son was acting the way he was. But no, some days it just takes me a little longer.

You see, recently Matthew has been a bear, with sharp teeth and razor claws. He has been so angry and mean and just NOT my little boy. Was it yeast? Was it bacteria? Is he just having a hard time regulating his body and his emotions? What do we do?

Then the aha moment. As I was preparing his tenth dose of chelator I realized I had upped his chelator dose this weekend and that was most likely the reason for the sudden anger. Often, until his body adjusts to the increase in chelator, and therefore the increase in heavy metals being pulled from his tissues, he is pretty nasty. AHA! Yep, we figured it out. Just like we figure out everything else. Sometimes it takes a while, sometimes we need to discuss it with other biomed parents. And sometimes we just get it, aha.

So here is to all the aha moments the biomedical parents before us have figured out. Because, really, without them I'm not sure I would be so in tune with my son's, or even my own, body and immune system. Thank you for all your aha moments!

Stay well.

Our Current Protocol

2012-01-04T10:50:00.000-05:00

I felt it was time to give you an overview of what Matthew is currently using, where we have seen the best results and what hasn't been working for us (not being GF). So with the new year upon us I it was time to take stock of where we are in Matthew's journey and to think about what we will be working towards this year.

Matthew always seemed like a "gut" kid to me so we have spent a lot of time working on healing his gut and providing him with the nutrients he was lacking. As time has gone on and we have learned more and more, we also realized Matthew has a lot of inflammation, especially brain inflammation, and metals. That has helped us hone his protocol into what we hope is the right mixture, although we know we will probably have to reevaluate and revise as he grows and we uncover yet another layer or piece of this puzzle.

So what are we doing right now? We are still utilizing our private OT to help with fine and gross motor skills. She works with him on balance, strength and writing issues weekly. We also have him in a swimming program, and although this is really recreational, it is taught by a school designed to work with special needs children and it helps with his overall core strength. We are utilizing homeopathy with my friend Jenn Palmer of Nourishing Journey, who also introduced us to ionic foot baths and Reiki. I actually took a Reiki class so that I could perform Reiki weekly on Matthew. I'm hoping to take the second class and become a Reiki master within the next year. We are trying to reintroduce the weekly foot baths, and are simply waiting on me to add them to our schedule.

We began AC Chelation, also known as frequent, low dose chelation, a few months ago and are currently up to round 24. We have seen improvements, especially in cognitive areas and in self control. Although the first 24 hours of each round does seem to bring out the bear in him! We are probably going to do a test to see what sort of metals he is dumping, although it really isn't necessary.

We had reintroduced casein over the summer without negative results so that is still in his diet. But we have once again eliminated all forms of gluten, including the naturally fermented sourdough we had been using. We aren't sure, but we think it has been causing him to flap more and to have anger and self control issues. So out it came. We will consider dropping the dairy again if we don't see appropriate improvements after going GF.

We still use many of the "typical" biomedical supplements including zinc, a vitamin B-complex, strong multi-vitamin, vitamin C, magnesium, probiotics, digestive enzymes, krill oil and astaxanthin, Enhansa and liver support. Due to the chelation we have added adrenal support and bumped up our yeast protocol while on round. We like grapefruit seed extract for yeast and Culturelle for bacteria.

Interestingly we have dropped the cod liver oil, which has been replaced with Krill oil, and Methyl B 12. This change was one we instigated and was not doctor directed. He does get B12 in the B-complex, but we no long give him shots or even a specific MB12 oral lozenge. The most interesting part of that is that the first time we tried eliminating the B-12 shots resulted in him having serious night wakings, but once it was reintroduced his sleep evened out. Since dropping it this time we are not seeing any sleep disturbances.

We are far from done, especially since AC chelation is at least a two year process, but we think he is on the right track. Some interventions we are considering for the future include a social skills group to help him with his social interactions. Often he forgets how others feel in certain situations and how he should behave. He also has anger issues where it is hard for him to control himself. And the other intervention we are considering is Low Dose Naltrexone (LDN). Many people have seen tremendous results with LDN, but it is a drug and we aren't sure how we feel about using a drug with our 6 year old.

So that is where we are and where we are heading. Stay Well.

The New Year

2012-01-01T08:01:00.000-05:00

As we wrap up round 22 of AC Chelation and step into 2012 I'm mindful of so many changes we've been through. On the personal front my family has lost a well loved family member and seen my father through several emergency trips to the ER, one that resulted in emergency surgery. We've watched as a family member spent six weeks at Johns Hopkins receiving treatment for a brain tumor, and thank God he is doing well. Further away we have witnessed other family members deal with longterm illnesses that ultimately will not end well. 2011 has not been kind to us, but somehow we endure and if we are lucky we learn.

Things I've learned and plan to cultivate in myself include more patience - I think this has been God's primary goal since I was a child. I'm just not patient, ever. I am, remember, a work in progress. I also plan to truly internalize that I am a good person and a good mother. This has been one of my greatest hang ups, worrying that I'm not "good enough" in others eyes. But I've learned, and I have to say it is because I must advocate for Matthew in a world that just doesn't agree or understand,that I am just right as long as I continue to try to improve and that I never stop working for my children.

I've also realized, although somewhat reluctantly, that I do need to give myself a rest and a break. I've been pushing myself for a while and it is taking its toll. I'm fatigued all the time and I can't give my family my best if I'm exhausted. I'm making a concerted effort to indulge in those activities that will allow me to be a happy and whole person.

I've resolved to say "yes" to the boys whenever I can. By that I mean I don't want my knee jerk response to be "no, you can't", but instead, as long as it isn't dangerous or a prohibited behavior, to be "why not, go ahead."

I'm going to continue to fight for those causes I believe in and going to help Matthew recover completely from autism. His improvement is nothing short of miraculous, but there are still areas in which he struggles. I plan to reassess his current program and see where we are both lacking and doing well. I know where his struggles are and we need to address those defincencies, but we also want to foster his strengths.

We will be looking into social skills groups, low dose naltrexone, going GFCF again ( if necessary ), homeopathy (which we started up again), Reiki weekly, foot baths and clay or Epsom salt baths again. I'm redoubling my efforts to serve only nurturing and nutritious foods. And hopefully I will be more in tune with my whole family. We are a unit, one, a family, and for me it is the most important bond in which I'll do whatever is necessary to keep whole and healthy.

Happy New Year and Stay Well.