What Grandma and a Black Cat Teach Me About Life

When I woke up this morning, I remembered the daunting “to do” list I penned before drifting off to sleep.  There is always so much to do on Saturdays.  My husband has the Explorer during the week, and even though I use it in the evenings after he gets home, it seems like I’m always rushing to do the bare minimum to put food on the table or some other necessity.  Not having a car during regular business hours makes it difficult to do many things, like pay the water bill for example.  Somehow, we make it work.  But on Saturdays, things tend to pile up.

So this morning, in preparation for the big day ahead, I get out my IonCleanse and shake up some ketones and start to write.  I need to be in a state of peace and calm so I can tackle this day with ease.

Our black male cat climbs on my lap to greet me.

Our neighbor’s dog found him as a little feral kitten….eyes closed and just big enough to fit in the palm of your hand….about three years ago.  He is so interesting, as he is far different from our two female farm cats we “adopted” about ten years ago.  Part of it is probably gender, but most of it seems to be a struggle from within his own mind daily, where he fights his instincts to be wild and his actual life of being domesticated. 

I’ve been practicing something I learned in the book “Love Warrior” by Glennon Doyle Melton.  Breathing.  Taking baby steps so I can learn how to be in the moment, enjoy life and not worry and be afraid so much.  This cat is helping me.

Because he comes from a long line of feral cats, he has to fight his instincts to bite and attack when he gets scared because he has let his guard down.  We have gotten so used to his bites….literally mid purr……but it’s hard to fully relax and enjoy the time he “chooses” us to love.

When he jumps on my chest and begins to purr, my chest tightens and my heart is in my throat.  He is soft, black, sleek and beautiful…..but so skittish, that it’s rare he chooses anyone at all to love.  So you feel special, but you feel scared.  At any moment he will jump away at the slightest noise, pushing with his strong muscly legs and digging in with his claws.  If he does stay on your lap a while and purr and rub his face on yours, you feel his sweetness, but know that in about five minutes, he will probably bite your face or neck. 

It’s so strange to think and feel so many things about a five minute experience that may or may not happen every day, but I think it’s so powerful because it is about love.

I don’t feed this cat or change his litter box.  I throw his toy for him to fetch now and again.  I’m calm.  And yet he “chooses” me to show me he loves me, for however brief and fleeting the moment.  He isn’t asking for anything in return, really.  And I don’t have to work hard to get his affection.

But I’m not completely enjoying these cuddle moments because I am afraid the whole time of being bit or scratched.

So, I take a lesson from “Love Warrior” and when he jumps on my chest this morning, I stop what I’m doing and I breathe.  I tell myself, “So what if he bites me?  He doesn’t break the skin.  It only hurts for a second and we are both back to our day.  He doesn’t mean to hurt me.  Just enjoy this pure form of love from this kitty.  Just accept it and let it fill you up with peace and love to help fuel you throughout your day.”  And just like that, I breathed in and out….and the moment was over and he jumped painfully away and sat at my feet.  It was over and done, but the experience was better.

I’m learning how not to live in fear….just waiting for the next moment to escape situations that make me uncomfortable.  I am always in the “flight” mode of ‘fight or flight’…..and what I’ve realized is that when things get tough, I need to acknowledge my feelings and express them appropriately, so I am better at handling stressful situations.

Being a naturally introspective and reflective person, I’ve been wanting to write about my recent experience with my Grandmother.  There is so much about the experience to share and discuss, I can’t cover it all in one sitting.

Amongst all of this morning’s ramblings, what I wanted to address was this simple fact:

One’s worth is not determined by how much they get done in one day.

I was a strong believer that this was a false statement until the experiences of late. 

My Grandma is 89 years old and she has led a very busy life.  Her days until becoming bed ridden were ended with crossed off “to do” lists and a feeling of accomplishment.  When she had to rest her legs as she got older, she would spend her time reading the newspaper, writing in her diaries and working puzzle books.  “I’ve never been bored!”  She used to say. “There is always something to do.”  And she did it.  Cleaning and cooking were the top priorities because that’s how she took care of her family.  She was the matriarch of the family with no one even coming in as a close second.  Grandma had a listening ear for everyone’s troubles with an empathetic hug and she cheered for all our victories with enthusiasm.  Many of us in the family thought she was invincible….our own elderly energizer bunny.

Until she wasn’t.

Her sciatic nerve had been a problem for decades….slowing her down in mornings….being a nuisance, is what she called it.  It took her a while to get going in the mornings because her leg felt numb and as time went on, she would need to sit and rest it after about 10 minutes of walking.  She never really expressed the pain she was in….she knew It would pass and people in her day didn’t discuss such things.  “It’s just old age.  Happens to everyone.”

Not getting out of bed and being productive in a day was Grandma’s idea of a death sentence.  And yet, one day, the pain from her leg and the arthritis in her back was so severe she could not leave her bed.  For days.  Which turned into weeks.

This situation is so difficult for so many reasons.  The one I’m focusing on today, is how my Grandma felt losing her ability to be productive….to physically work.  Her tears each day were not just because of her pain, but because she felt worthless.

All of us who love grandma, love her because of who she is, not what she can do.  But she feels like she is not a value to her family if she can’t “do”.

Up until this point, I would have argued the same.  If any person on this earth is not working hard, they are less valuable to me and less valuable to society.

Our love should not be conditional to the amount of physical work someone does in a day, yet we tend to think its okay to look down on someone who is “lazy”.  Maybe that is different, because being lazy is a choice, when you are able to do things but don’t and you rely on someone else to do it for you.

Being physically or mentally unable to take care of things doesn’t make you worthless. 

Infants are helpless and completely rely on someone else to do everything for them, yet we love them unconditionally.  I can’t imagine a love more pure for my son with autism, who needs help with many things and might never live on his own.  He brings me so much joy and richness into my life…..I wouldn’t trade him for anything.

And I think back to this black cat…..rubbing against my feet.   Aside from catching spiders and lizards, he doesn’t do much of anything “productive”.  In fact, he can be a literal pain.  But he gives me so much joy in those sweet moments we share……that he is worth it.  He is worth it all.  Just as all of God’s creations are. 

Take the time to just breathe today.  Soak in the goodness and beauty in life that is all around us.  Be patient and forgiving. Realize your true value and worth in God’s eyes. 

Remember that love and kindness and sincerity…..THAT is your legacy.  Having your house dusted once a week and your closets organized are worthy of our time, but they are not on God’s list of requirements to get in to heaven.

Breathe.  Accept love so you can give it.  Have FAITH replace fear.  Be present.

Happy Saturday J

What is a typical American family doing on the eve of the most scandelous election in history?

Today might be one of those moments in history....you know, where the world is forever changed and so people remember the mundane things you were doing at that exact moment "it" happened.

In a few short hours, the craziest election in the history of the United States will be complete.  The country is divided and some have promised riots and violence if the candidate chosen is unfavorable.  Others have simply vowed to leave the country.  It's a time of unknown.  Reminds me somewhat of the uncertainty of December 1999 when Y2K was all anyone talked about and what everyone worried about.  The collapse of our banking system.  Seems almost laughable now.  You mean we  were worried about the banks?  Seems pretty trivial in comparison.

Tonight I sit typing this as I sit on a heating pad on my broken bed as my kid's gluten free and dairy free pizza cooks in the oven.  It's an easy dinner night, as my back has kept me mostly immobile today.  My house looks like it has imploded, with the contents of my desk overflowing onto the floor, looking like at any moment I could be swallowed alive by it's tide.  From the living room I hear my husband's video game at the usual volume of "loud enough to wake the dead".  It makes for interesting living arrangements when one as myself enjoys the calm and silence, while my significant other hasn't been able to hear well since the war.

I wonder if we are a typical American family.

Unfortunately, I think so.

My husband is a physically disabled vet, with PTSD.  He continues to work full-time so I can homeschool and take care of my adult son with autism.

My chronic health issues, which made me "The Greenbean Girl" for a year, throw a monkey wrench in all I have to accomplish each day, due to my overwhelming family needs along with my very demanding religious obligations.

My life is busy.  And stressful.  But I think most Americans could swap out a comparable thing or two about my life and be in the same boat.

The SS "How do  I make it through today?"

And here we all sit, on the eve of the biggest election, and think....how can I possibly handle life getting worse.

That is not to say I don't count my blessings or that I think I have a terrible life or the worst life.  Not at all.

I just don't know if I can handle more.  More struggles, more trials....

Being Grateful is Not the Same as Being Happy

I've always thought of myself as a pretty grateful person.  Autism has given me a unique perspective of what is truly important in life and disregards things that don't matter in the long run. 
However, it occurred to me this morning, that despite "counting my blessings", I couldn't use the word "happy" to describe myself.  Words like, "worried", "frustrated", "busy", "scattered" are a much better fit.  So why can't I be happy?

I've seen the "Happiness Is a Choice" memes, and I always thought of it as an obvious yet necessary statement to people who had everything but chose to be unsatisfied.  Today it takes on a new  meaning for me.

Just because I don't "look sick" doesn't mean it's all in my head

I really need to change the synopsis of this blog.  As far as using what I've learned from healing autism to heal myself?  I guess if you count the fact that I'm not dead.  Then, maybe that still applies.  However, the fact is, I am...right now in this moment...probably the sickest I have ever been.

I get that you are tired of hearing about me being sick.  And I can tell you that I am absolutely fed up with it.  It isn't fair that I should be so sick for so long. 

Those of you who are lucky enough to endure the flu or seasonal allergies can't possibly imagine how hard it is to exist every single day when there is no end in sight....especially when you "look fine" for the most part.

On my worst days, I've taken selfie after selfie. I'm looking to see if my illness is noticeable.  Can you see how I am dying on the inside?

Today was one of the worst days.  My whole body ached and I was laying in my bed, sort of contorted to position myself on pillows to push against the severe pulsating pain in my abdomen.  I finally felt no pain and in an attempt to stay completely still, I felt myself start to drool....I hadn't realized my mouth was open.  I looked at the clock.  I had 22 minutes until I had to start dinner.  I watched the clock, giving myself a pep talk as I counted down the time.  "When it says 4:00 you HAVE to get up and make dinner."  It was my mantra.  And I did it.

You see, even though I feel like death, I'm first and foremost a mom and a wife and I don't get "sick days" very often.  Those are reserved for the days with the nauseating migraines, and the only reason I get to be off duty is because of my crying, wailing and hitting myself in the head with a hard covered book.   I'm not being dramatic.  This is real.  This is my life.

I'm working on my third year in Texas and I've become increasingly ill with each passing day.  Some have grown tired of my insistence when I "look fine" and insist it must all be in my head.

When I did the Emotion Code, the woman told me I had a trapped emotion and I felt like I didn't deserve to be well.   That may be the case, but that is far from making it all up or inventing problems.

I don't need any more drama in my life.  I have a son with autism and another teenage son, both of which I homeschool.  I work in my church nursery with little one's ages 18 months to three years.  I take my children to a church seminary class.  My husband has a TBI, PTSD and is in chronic pain and cannot contribute to any household duties. Everything, from bills to laundry, is my responsibility.  I try to contribute to the household income by babysitting and cleaning houses.

I'm not writing this to get pity.  I'm writing this in my own defense, as it has come to my attention some people think all of my issues are in my head.

I wish they were.  That seems like it would be an easy fix.  Maybe hypnotism or something.

The plethora of symptoms I experience are very real and very debilitating.  I can't even just eat food,  One of the basics of survival, without some kind of reaction, pain or swelling.

Do you know what it's like to wake up and not be able to think?  To REALLY struggle to just get your thoughts?  And you keep thinking, ok....this will pass....I will snap out of it....but pretty soon it's noon and you've barely been coherent.  Can you tell anyone?  No one gets it and they think it can't possibly be that bad...or how could you homeschool?

"Why don't you go to the doctor?"  Like they would know just what to do, right?  When I did have insurance, they couldn't find anything.  Now, my husband's company is small enough they don't have to legally offer insurance and we make too much money for any assistance.

I have tried so many things.  I have tried SO MANY THINGS.  Things are expensive.

In the end, it doesn't really matter what I'm doing or not doing or what you think I should be doing or shouldn't be doing. Please, please.....stop judging me and thinking you know me and what I'm going through.  I am sick and just because I'm not actually in the hospital, doesn't mean I probably shouldn't be.  Or that I must be fine, or I'm dramatic.  By the pure grace of God I get up each morning and once in a while I have a decent day where I feel a little better.  By God's grace I can still take care of my family. 

Just please....please stop thinking you know me and you know what I'm going through.  I will never tell you to your face how awful I feel or that I can't handle it....but on the inside I wonder if I'll make it through the day.

Show some compassion.

Just because I don't enjoy running, doesn't mean I'm lazy

Running is the "it" thing.  Everyone wants to run a 5K and there is a marathon for just about every organization and cause on the planet.

You're not cool, unless you run a 5K.

And if you are lucky enough to have the bragging rights of a half-marathon, WELL.....just. wait. until you can look down your noses at all of us when you run your first real marathon!

In all seriousness, there are lots of people who run daily and participate in these events who are not judgmental.  In fact, my sister in law is one of those avid runner show offs with the cute running attire and perfectly fitted expensive shoes holding a medal  or wearing a sash.  She loves it.  It's her "thing" and I applaud her for it.  I really do.  I am in awe.

But there are people I have encountered who make you feel like a worthless pile of crap if the idea of running for FUN isn't exactly appealing to you.

Just because I don't want to run, doesn't make me lazy. 

It's just not my idea of fun.  Getting up early.  Braving the weather...rain or shine...hot or cold.  Did I mention the sweating?  This is the opposite of fun for me.

I really enjoy musicals and theater.  My husband despises them.  He doesn't understand how singing in the middle of a show adds anything to it except noise.  Is he uneducated? Does that make him a complete loser? (ummm....that's a loaded question....I digress)

I am tired of being judged because I don't enjoy running or hiking or playing football or soccer.  Not everyone is particularly coordinated to do these things.

Should I be active to stay healthy?  Of course. But if I choose to walk on the treadmill, why should I be made to feel inferior?

What many people don't realize is how debilitating allergies can be fore some people.  Being outside is not enjoyable when your asthma and/or allergies kick in and make you sick and miserable for days.  Maybe that sounds like an excuse, but until you've walked in my shoes, please don't judge my lack of trudging about in the wilderness.

I enjoy different forms of exercise like swimming and dancing. 

All the name calling, back biting and superiority is what keeps women from being able to be good friends to each other.  We need to seriously take a look at our perception of others, and think about how we would feel in their shoes.  Not everyone has to have the same "likes" to be of value.  Not everyone who doesn't run for fun is a fat lazy loser.  And it definitely doesn't make you better than me.

An Evening Reflection

It's been 8 months since I've written.

I have a lot on my mind tonight....and a functioning computer.

At different moments in my life, I have stopped with serious pondering, to consider the idea of repeating mistakes. Do I keep making the same mistake over and over, setting myself up for failure?
Am I repeating my parents mistakes in some sort of crazy cosmic karma....a loop in time destined to repeat for eternity.

My mom wanted me to take the road of life that she wished she had.  Even now, I wonder if she still isn't disappointed that I did not become a successful career woman earning a six figure income.  Loving me and nurturing me as a young child was in a way to encourage the future she so desperately wanted.

Those memories of disappointment remain fresh in my mind, even though I am doing the most important work of my life. 

I don't want my son making the same mistakes I have, either.  Every night in my prayers, I ask God to make him stronger and wiser so he doesn't have to suffer the way I have.

If he doesn't, will I spend the rest of my life in constant disappointment? Or will I be proud of him regardless?

Eerie similarities. 

As much as my mother wanted me not to repeat her mistakes, I have fought just as hard to do the same.  Yet tonight, I find myself in the situation I have been running from my whole life.

Is my son going to spend his life trying to avoid making the mistakes I did?  Will it consume his everyday thoughts?

Giving up is not in my nature.  What I "used to be" and "used to do" are phrases that haunt me.  I need to be that person NOW.  I need to find her and get her back in the game of life. Being a "good mom"/ "good wife"/ has to be consistent throughout one's life.  So many excuses plague me. 

Enough is enough.

Let me off this spiral.

What is a Salicylate?

Green Bean Girl has been M.I.A....

A little over a week ago, I had a great conversation with my pal Beaker from Team TMR. My symptoms had me in a whirlwind and I was so overwhelmed I wasn't seeing the patterns anymore. The more I learned about food, the less sense any of it made.

Although I have gut issues, and an allergy to candida, sugar did not make me feel nearly as bad as eating an apple or raw vegetables.

Meanwhile, the wheat allergy I had easily managed for years, turned into a 7-10 day horrific event from even the slightest infraction. My stomach would blow up like a balloon covered in painful itchy welts. The pain was so severe, I would alternate covering my stomach with ice packs and peppermint oil.

I also have a confirmed allergy to dairy. It has given me clogged sinuses, mucus, skin rashes and brain fog in the past. But since moving to Texas, everything changed. Different cheeses cause very different reactions. But plain ice cream doesn't have much effect.

Oh, and now when I eat cooked onions, I get boils on my cheeks.

Lovely, huh?

So, when I started breaking out into hives from green beans? Well, I was about ready to give up.

I started really researching Histamine and Histamine rich foods. I began taking a DAO enzyme supplement to help my body get rid of the histamine. I was doing some better...but why did it seem like the supplement only helped with some food reactions and not others.

Cue the beautiful and brilliant Beaker.

She taught me about salicylates.

Essentially, salicylates are natures natural pesticide in fruits and vegetables. And some people are very sensitive to them.

I read many food lists to see what the offenders could be. After becoming aware, I took out some major players in my daily routine.

1)Peppermint Oil and Peppermints

Twice a day I took peppermint oil in capsules and was a peppermint and Altoid junkie. I even used peppermint toothpaste, body and face wash.

2)Licorice Root Digestive Enzyme

Taken with everything I ate.

3)Coconut Oil

Coconut Oil was a huge part of my daily life, as was Peppermint Oil. I used it to coat and cook all my food, as well as lotion and deodorant.

As I continued down the food lists, I noticed that many of the foods that I reacted to that were not high histamine, were high salicylate. And if they were both, high salicylate and high histamine, well, my DAO enzyme just didn't seem to work.

A lot of things are starting to make sense, and I'm hoping now by reducing my salicylate load, my body will not be in constant crisis, and I can start to heal.

A few other key points:

-I was using calcium for migraines. Ditched it when I learned calcium makes mast cells explode.

-I was dependent on high doses of magnesium, which seems to be one of the key elements in healing this type of illness.

-B vitamins and aminos had been a real help to me in the past and came up again as keys to healing.

I'm hoping these few changes will make all the difference. It may take 4-6 weeks to rid my body of the salicylate stores. 

here goes nothin'

How I Immediately Dismissed the MMR/Autism Link



I was visiting my Grandmother and she was reading over the paper as she did every morning. She shouted to me from the other room, “Did you hear this? It says there might be a link between autism and the MMR.”

“Sounds like a bunch of sad angry parents looking for someone to blame.”

I didn't read the article. I didn't even ask her for any details. I completely dismissed it. It was an incredulous idea....a childhood vaccination having anything to do with autism. Why would doctors expose infants and children to such a thing? It couldn't possibly be true.

I went on for years never hearing about it again.

During that time, I was focused on teaching my son. I was involved in his school and talked daily with his teachers, aides and therapists. I continued behavior plans and followed through with expectations at home.

I was focused and never strayed.

I was never in an autism support group; never even heard of one.

I never searched the internet about autism or tried to find other moms online. It  was relatively new and I didn't have time.

I had two little kids who were constantly sick even though they never went to daycare. I was overcome with worry and took them to doctors, who never seemed too concerned and never really helped.

When Tristen was about 9 years old, I received a book for my birthday from my mother-in-law. It talked about kids like him who were chronically ill. The kids described in the book had the same issues my kids did. This was the first time I had some kind of direction how to get my kids healthy.

I took him to a new doctor who tested his blood. He told me how sick he was and that most of the vaccines he had been given had not provided him with immunity. I was shocked that I had done what I was told by our previous doctors, and put him through so much trauma, just to have them not work. This is where I started to question what had been taught to me my whole life.

 

I started to look back through their baby books and journals.  I started to see where they had been affected by their vaccinations.  My youngest son, Tanner, even had a severe reaction to the DTP where the doctor who finally stabilized him told me he should never have that vaccine again.  The next doctor we saw disagreed and mocked me for my concerns. There were all these red flags never set right with me, but I didn't know what to do about it.  Everything started to come together.

I wanted to continue to learn more about how to heal my son's health issues so I decided to go to my first ever autism conference and meet people who were just like me.

Jenny McCarthy was a keynote speaker that year, and it was the first time I had heard about her since she was on MTV's Singled Out.

I took what I learned about autism and vaccines from lecturing doctors I met in person. And lots and LOTS of books.

I never believed the headline my Grandmother read to me 15 years ago, because it was easier to dismiss. Juggling a 2 year old with autism and a newborn baby while my husband was deployed left no time or energy to go down a rabbit hole of questioning everything I had ever been taught.

Last year I learned about the CDC covering up a link between the MMR vaccine and autism. They knew if the children received that vaccination on time (at 12 moths per the CDC recommendation) there was a dramatic increase in chance of autism. They found it in their own study, and they covered it up.

I'm not saying the MMR caused my son's autism, but it has definitely caused some kid's autism.

It is easy to dismiss something when it seems it can't possibly be true....when deep down you don't want it to be true because it upsets the foundation of what your life has been based on....being responsible and following the rules.

I didn't join in some Jenny McCarthy groupie fan club to gain this opinion.

I didn't have any influence from any autism groups or any other autism mom's.

My thoughts are based on my life experiences with my kids and what makes sense to me from reading package inserts and published medical journal articles.

Don't believe me just because I said so.

Check it out for yourself.

Find out the real facts for yourself.

You don't want a snap judgment to leave you with regrets.

Autism Mom Needs Help Kicking Cancer

Mortality.

We may not remember at what exact point in our lives we realized it, but I bet you have all thought about it.

Death.

What will happen when I die? Where will I go? Will I cease to exist?

Many have religious beliefs that help with these questions, but whether you do or not doesn't really matter, because despite the answers, we still have these questions:

Will it hurt? When will it happen? Will it catch me off guard?

These questions can be more plaguing, and most will try to live their lives cautiously to avoid an untimely death. But it's mostly out of our control. Most of us don't get to decide the logistics.

I remember the moment when I really began to fear death.

It was shortly after my first child was born.

Like being slapped in the face, I was hit with the thought of what would happen to my child if I were not around to take care of him. Panic instantly set in as I went over lists of names in my head of family and friends who could possibly take on this responsibility.

More questions.

Are they already good parents?

Do they have the ability to care for a child?

Do they have the monetary means?

Would they be willing to take on the responsibility?

If you've had this experience, I'd many of you have easy answers to those questions. You know good, kind-heart-ed, competent, willing family members who would be fighting over the opportunity to step up in such a tragic circumstance.

Some don't have such easy answers.

Maybe you don't have much family. Maybe the family is willing but ill equipped. Maybe the ones closest to you have struggles of their own. Maybe they would want to, but couldn't.

No matter what the answer...easy or hard, it is something that really eats away at us as parents. Just the thought of leaving our children like that in this world is enough to shed tears, but to find a suitable substitute in some cases may be near impossible.

Will they love the child as you do? Will they have patience? Will they teach them all the tools they need to live a successful life? Will they be kind?

What if your child has a disability?

What if every ounce of effort it takes to raise that child on a daily basis is that times 10 of a typical child? What if your patience level needs to be a thousand times? Who is going to have that quality needed for your child?

When you see how the world looks and interacts or ignores your child, so you have to be the advocate every waking moment...who is going to fill your shoes?

This goes beyond being just a “parent”, although I believe parenting is the most important job a person in this world could have. This is a super-parent: an up-all-night-calm-all-day kind of super being!

Will the person have what it takes to continue to love this child when no one else does?

All we have to do is look at the news to see how autistic individuals are treated.

Abused and neglected in schools.

Teased and beaten by peers.

Humiliated for the world to see.

Forgotten and left alone.

This is the fate of many individuals who HAVE doting caregivers and loving homes.

Where will my child be if no one steps up to the challenge?

Institutionalized?

Then there is the money. Who has the disposable income for life-long care?

And if you are biomed or homeopathic? Forget about it! Who is going to pay out of pocket when you can get prescriptions practically for free?

Will the person caring for my child care about their special diet? Will they understand how important a gluten free casein free diet is? Will they jump through hoops to have similar alternatives at all extracurricular functions? Will they cave to the peer pressure because they don't really understand why they can't eat those foods? Will they buckle after seeing the grocery bill for one week and switch to Ramen and Fruit Loops?

And what can we do about it? We will be helpless from wherever it is you believe we go after life on earth is done.

Will that person understand their needs?

Maybe if my child had super-human quality or trait to impress them. An impressive singer or dancer or pianist. Or an impeccable memory. Impressive artistic abilities. The world loves those kids.

But what about the biters, pinchers, scratchers and screamers? What if they can't tell you what they want...what is hurting...what they need?

Will they clean up the poop smears on the walls day after day and still cuddle them at night when they want to be loved?

Will they change their diapers when they are adults?

Will they cry out helplessly with every seizure and pray for it to end?

Children and adults with disabilities need a kind of self less love that is unfortunately diminishing in the world as we know it.

It is heart-breaking and horrific to think of any child losing a parent and not finding a loving home to thrive in.

It is down right all consuming and terrifying to leave an autistic child in this world without the ones who understand them and depend on them the most.

When we are doing all this worrying, we are visualizing the 'what-if's'.

Well, 'what-if' you were an autism mom, diagnosed with cancer.

Please, if you can, give anything at all to help this mother diagnosed with cancer have more time with her son.

If you would like to donate to our fundraising campaign to support Mel and her family please DONATE HERE: http://t.co/LeZ12VJ2Q4



And to read more about her and her story, check out http://thinkingmomsrevolution.com/help-autism-mom-fight-breast-cancer/

Trust Issues

Our little kitten is growing fast.  He is about three months old now and as mischievous as ever.  A few weeks ago, he started wanted to cuddle up to us at bedtime.  He waits for the house to get quiet and he scales the bed with expert ease and gingerly walks up to my pillow, purring all the while.  Oh how I want to cuddle and kiss this sweet little rambunctious kitten.  Obsidian rubs his face across my face over and over again with a constant purr.  It is hard not to melt into his cuddles.  After a short minute he bites me.  More than a nibble…enough to really give you a start.  I stop and say, “no no, kitty” and l let him rub his face against mine….in a few seconds he bites me again.  I move him away from me gently saying ‘no’ and cover my head with the blanket.

After a few nights of this routine, we started to shut him out of the bedroom.  We couldn’t trust him not to bite us.

The joke in the house is, “This cat has given me trust issues.”

It wasn’t so funny when I realized it wasn’t the cat.  I have severe trust issues, because like this kitten, I have someone in my life who catches me off guard and “bites”.  Not in a literal sense, but an emotional one.  I never know when it’s going to happen…I’m just certain that it will.                                                                 

 When Obsidian rubs his face against yours, your whole body tenses up, fearful for what is coming.  You can’t relax and really enjoy the cuddles, because you know at any moment you will feel pain.  And telling a kitty “no” is little less than a waste of breath.  He pays you no mind, unlike a puppy you scold to stop chewing the furniture.  Puppies feel bad they disappointed you.  Cats just wait to do what they want when you aren’t looking.

I’ve realized I live in a state of constant fear.  And it’s not even physical…but mental and emotional.  I never know when the other shoe will drop and when my world is going to come crashing down.  There’s big stuff, and there’s small stuff….but no matter the anger, the tears, the lectures the threats…..it’s always easier to ask for forgiveness than permission.  I’ll do what I want now and just deal with it when she finds out. 

Trying to explain how that feels….how you can feel so alone and helpless and unloved when someone disregards your feelings in such a way…..I don’t know how to put it into words…but the bottom line is It Sucks!

What kind of person has no empathy?  Sometimes I think I’m dealing with a personality disorder.  But I keep on.  Every day. 

Sometimes I cry and cry thinking about how much it hurts.  Sometimes I’m numb.

How much longer will it last?  When can I be free from the fear?  I don’t think I will ever completely trust a person ever again.  I’m broken on the inside. 

How much time will I need to heal if I am ever free?  Will I ever fully heal?

I’m so tired.   I just want to have someone to trust.

School's Out For Summer!!!

WE MADE IT!!

What an incredible year it has been!

Not only are we looking back at the 2013-2014 school year, as our first homeschooling year, but next month also marks one year of us living in our new southern location. 

So much has happened this year!  It has gone by haphazardly fast...I can hardly believe it! 

I started out diving head-first into Hashimoto's disease when we moved here last summer, and have been trying to claw my way out of that paper bag since. 

I frantically began to volunteer for my church, pleading for God's blessings from self-less service to help get me through my darkest hours.  Soon, I became the leader of the teenage girl's youth program, demanding Sunday, Wednesday and many Saturday requirements.

I was wonderfully blessed when I read a blog by The Thinking Mom's Revolution's magnificent DragonSlayer, giving me crucial answers to help me get my health back on track and regain some of my sanity!

While struggling with the ups and downs of  autoimmune disease, I somehow managed to find myself part of TEAM TMR, a non-profit grant program to help families with the financial burden that is all things autism. Before I knew it, I was immersed in writing a chapter for the book that would be sold to fund the grant program, and forever nicknamed Green Bean Girl. 

My autism activist blood runs deep and I soon found myself at the Give Autism a Chance Summit in Austin, Texas, where I was graciously welcomed in the home of my new warrior buddy, Lone Star, and her adorable family. There, I was introduced to another strong warrior member of our team, Chief, who writes about recovering her daughter in our book.

Just making it to the summit on the heals of yet another protocol I was trying to ease my health issues proved daunting, but I MADE IT!!  I was so excited to see some of my much loved/ FB stalked heroes, like Kim Stagliano, managing editor of Age of Autism, and  Ginger Taylor, co-author of Vaccine Epidemic.  As I anxiously observed from afar, I was soon greeted with warm, energetic hugs from The Rev and Tex, co-authors of The Thinking Mom's Revolution: Autism Beyond the Spectrum.

(for more on why I love these ladies, see the video below)

 

Then, with the help of my new TMR buds, I was able to get my first picture with a movie star...hmmm do you think I was nervous?

 I had actually focused so much on meeting my autism mom heroes in preparation for this event, I failed to prepare myself to meet celebrities like Aidan Quinn and Rob Schneider!

I also had the privilege of meeting Barracuda...my other TMR BFF and her brilliant family, not to mention the sweet walking-miracle, Sophia.

Around the same time, I started working for a respite care center in a nearby city.  I am called in as a "fill-in" on short notice when a staff member is sick or needs a personal day.  I work primarily with autistic children and adults.  Because of our homeschooling schedule, I am often asked to work the 4-12 shift and some over nights and weekends.  This proved difficult, as I also took my son to an early morning scripture study class each day from 6-7 a.m. It immediately became more responsibility and time away from my family than I had anticipated.

The school year comes to a close at the same time we are promoting the launch of our book, Evolution of a Revolution: From Hope to Healing.  That's when God thought I needed a bit more love in my life, and left a tiny kitten with it's eyes still shut, outside our neighbor's house. 

You can imagine we did the only thing possible....bring him inside, keep him warm and dropper feed him formula every two to three hours.

Wow!  It HAS been quite the year!  And we are not through!  My husband is actually excited to make plans to take the family to the Autism Education Summit in Dallas in October!  Bring on the activism!

As the boys and I danced and sang "School's Out" to celebrate our last day of school (well, one boy danced with me while the other commented on how school wasn't really out forever and other snarky realisms that truly fit this un-official Aspie kid)  I couldn't help wonder what in the WORLD would be in store for us in the year to come!

<3

“There is no greater agony than bearing an untold story inside you.”
― Maya Angelou, I Know Why the Caged Bird Sings    

Am I up for the waiting game?

A Sunday morning when I could sleep in, I am wide awake at 7 a.m..... the remnants of the night's dream still fresh in my mind.

It was an odd  dream... most people would brush it off without a second thought.

I was at a strange funeral for a "grandfather".  There were over a hundred people gathered to solemnly pay their respects, but instead, the familiar faces from my past were all preoccupied with a decision I had made, that had nothing to do with the funeral.

Apparently, soon after moving to this new city, my right hand had been cut off.  I decided to reattach it.  It was sore, and wasn't working quite right, but I had confidence that given time to heal, my hand would be able to function well enough to write, type, carry things etc....even if it wasn't perfect, the job would get done.

Conversations continued as I made my way around the crowded funeral.  People couldn't believe I had chosen to get my hand re-attached. 

"You should have your stump in a sling and learn to use your left hand to write.  People do it all the time."
"Aren't you worried about infection?'
"Your hand will never function like it did before."
And so on.

Weird, right?

But as I think about it, this is really a parable for my whole adult life.
I have always been questioned about my choices....that in my mind....seem like a perfectly rational decision.

I mean, if you could save your hand.....why wouldn't you?  Why wouldn't you spend the time, money and effort if it meant you could keep your hand?

I spent a lot of my life focused on "doing the right thing"....being a "good parent" and a "good person" by societies standards.   I always followed the rules....often times not thinking for myself the overall picture.  Just going by what I believed would keep myself and my family safe.  There was a false sense of security in that kind of thought.

I started to realize from experiences that when I had questions, they didn't have the answers, so If I wanted answers, I had to start finding them myself.  You see...no one else  was really looking out for me or my family.  It changed my perspective on life.

I went back to using my gut to guide me in my decisions.  I used prayer and guidance from the holy spirit so I could feel confident in my decisions.

Have I always done the right thing?  No.  I am definitely not perfect. 

What really shocks me is how many people make judgements on other people's decisions without knowing all the facts.  Actually, I'm not shocked people make snap judgements, I guess I'm more shocked at the fact they voice them to the person they are judging and that the judgements don't make any sense.

I'm the weird one that people don't understand.  Most often times, I make a terrible first impression.  I am not good socially.  I hate small talk.  I find it very awkward.  Once I get to know someone, I feel comfortable and conversation flows easily.  I am honest and loyal.  I make decisions that other people don't understand, but the people who know me best...who have heard me explain my thought process....are always supportive.

Society doesn't think I should have gotten married at 18.  They think I should have given my baby up for adoption for a better life. 

Society doesn't understand why I would pay tithes and offerings to my church when the cost of autism is so great.

Church members can't comprehend why I would home school my children.

Others see us living on low-income and question the choice I made to be home with my children instead of working full-time.

And I'm sure if I had biomedical-diet-intervention based friends with children with autism (that weren't on Facebook)  they would have opinions too about if I'm doing enough of the right things, too.
I hope not.

I try to keep myself away from the Facebook world, as I am busy with many responsibilities that should be a priority.  It is such a different world from the real one I live in.

I don't stand on the street everyday with a picket sign warning people of vaccines.  Most people I see in my daily life have no idea of my views, which I would think are the most controversial of them all....and yet I get the most opposition from my daily life practices that seem very rational to me.

On facebook, I post articles I believe to be true, inspirational and life-changing.  Many friends and colleagues choose not to see what I post because of it...but at least that is a passive way to disagree. 
In my real day to day life in the community, I get lots of loaded questions, confused looks and lack of support.

Like....Why would you have your hand sewn back on? 

Makes perfect sense to me....but I guess I'm alone in that logic.....just like everything else.

Diet?  How can you deprive your kids of food? How can you afford it? 

Vitamins and Supplements?  Those aren't necessary.  They are a waste of time and money.  If they just ate healthier, you wouldn't need them.

Biomedical Doctor?  Why don't you just get insurance so the doctor is affordable? 

Homeschooling?  What about social skills?  Don't your kids miss having friends?  Aren't they going to college?   Doesn't your son need special education services?

In the end....does any of this change my mind?  No.  I'm still going to do what I believe is right for my family, no matter who objects. 
It just kind of sucks, not to be supported, even in a casual way....by strangers or acquaintances...
Even faking interest and understanding is better than a preconceived notion of the situation.

It took me at least four years for people to "get me" the last time I moved.  Things could be worse here, for sure.....I feel guilty about complaining.  

I have a hard time getting past things that don't make sense.  I can't understand people not being supportive of growth and happiness.

Life is strange.  People are strange.

So for now, I will continue on...each day...without a single face-to-face person that "gets" me. 

I'll give you an update in 2017.

Free Health Care- Part 2

When my husband joined the army he was 19 years old.  We had a one year old, and it was a good career choice for him.  It gave him a way to provide a steady paycheck and health coverage for his family.  It was an honorable thing to do, and as I think back, I know we were blessed to have that stability in our lives, when we were a young family starting out.

When I think about my husband's experience as a disabled veteran using the free health care system the government set up for him and others like him, I always feel a bit torn.

I don't want to seem ungrateful for the life the Army gave us at such a critical time in our lives.  I am not ungrateful for  a modest disability pay, or for Josh's free college education.  But what good is any of that, if the veteran is hurt or sick and the system that is set up to help him almost kills him?
The world is not black and white....experiences are not only good or bad.  The Army gave us our start, but robbed us of our future.

I don't know that all VA hospitals will fail their veterans in the way they failed my husband.  I am just lucky he is alive and well.

Josh fought with the 3rd ID as an Infantry mechanic in 2003 when the US sent in our troops to over-take the cities and ultimately take control over Baghdad.  Josh was 23 years old and often faced hand to hand combat.  He later told me he only had one thought in his head...I have to make it home to my family.
All of the details aren't important.  Suffice it to say that my husband was not a violent man, who loved guns and joined the army to get the chance to kill people.  It was to take care of his family, and hopefully have a promising career he could be proud of.  He was sweet, sensitive and charming.  He did what he had to for his family and for his country.

Seeing friends die and children used as bombs and shields still haunt him today, as it does thousands of soldiers.

After they reached Baghdad, he and his unit were cleared to go back to Kuwait.  Not long after arriving, his foot was crushed by a two-ton trailer.

Even after a few surgeries and pins to keep the bones in his toes together, it was the mental scars where the real damage was done.

We struggled with his patience with the kids, spending sprees, and alcoholism over the years.  It seems he was always disconnected and trying to find a new way to cope.

He finally agreed to go to the VA clinic to be treated in 2007/2008.  He even asked me to go with him, and I was happy to take off of work to be there to support him.  We spent the day being evaluated at different clinics.  We learned occupational therapy techniques to help him.  We learned physical therapy techniques to help him.  I met with a female case worker who was so kind and supportive and understanding to me, the wife, and shared some of her own experiences.  She gave me a card with her personal cell number and told me to call her anytime.  I was again, so grateful to have these services available so finally my husband could get the help he needed and our family could heal, grow and move on.

But that's where the hospitality ended.  In the next visit my husband made by himself, he was prescribed a half a dozen prescriptions.  It was a whirlwind of a nightmare over the next few years.

The pain and anguish we the family endured over endless side-effects from the medication paled in comparison to the shock and disbelief of the lack of help, support and care for us during this pain-staking time. 

Trembling and shaking and at my wit's end, the first call I made to the case manager who had given me her card, she listened and only instructed me, that if I ever felt my life was in danger I should call the police.  She said I shouldn't be afraid to leave him.  I told her of all the tics and convulsions he would have in his sleep and how they terrified me.  She said she would give the message to the nurse. 

They took him off the Tramadol and put him on Oxycodone at his next visit.  I couldn't believe it.  And they added more meds.

Everyone knows how addictive oxy can be. 
He worked his way up to taking the whole month's supply in the first week of it arriving.  The next week would be a come-down that was horrible.  The third week, he was starting to be more coherent and I could try to talk to him about how he was acting and what the drugs were doing to him.  He was unable to urinate, sleep or even speak coherently.  He was wasting away...his skin was blueish and hung off his bones.  His eyes were sunken into deep black pits.
He would not listen to me.  He dismissed everything I said...even the videos I took of his convulsions, and the pictures of him falling asleep while opening Christmas presents.

I tried calling the number I had before.  No answer.  I left messages that were never returned.  I called the clinic and left messages.  I was finally told I was no longer allowed to participate in his medical treatment.

I called family members out of desperation.  Surely, he would listen to them!  They gave me numbers  to drug abuse hot lines.  They all told me the same thing....take my kids and leave.

But, this wasn't Josh!  He was being enabled to live this way by being sent over a half a dozen drugs each month without ever being seen by a doctor....only once a year.  I think he may have talked on the phone to a few here and there, but there was no scheduled therapy...that he attended anyway.

So, maybe those reading this would say, this is not the VA's fault, it was Josh's.  He chose to take more meds than he should have and missed appointments.

I disagree.  I think the VA clinic should know enough about the medication they so freely prescribe, to know what it does to an individuals state of mind.  They should know they have deep rooted issues that need to be talked about in a therapy session rather than drowned with drugs.  They should have a responsibility to their patients to take the best care of them, and to have a caregiver they can talk to so they can have a real idea of the situation.  People on drugs do not realize reality!  He couldn't tell if he was good or not!

To this day, he swears he did not take me off the list as people who could discuss his health care.  He might have an doesn't remember.  There needs to be a better system in place so this doesn't happen.

I remember being so scared everyday, when I came home from work, I would rush to the basement to see if he had over dosed.  I tried to take his medicine and hide it and he threatened to call the police on me.  I gave him the prescribed amount for a while, each morning before I left for work, and he was horribly mean about it.  The next monthly supply came and he hid it from me.  I searched the house, vehicles and garage for it, but could not find it.

I was so exhausted from the daily fear of what he was going to do or how he would treat the children, I secretly started to wish he would overdose, so I wouldn't have to be scared anymore.

It was a nightmare of a life, and I choose not to go into anymore detail, as I have put that chapter of my life away.

My point in sharing this story is that, just because it's FREE doesn't mean it's GOOD. 
Do you think if we had to pay for the meds, Josh would have been so quick to try them all??  No.  We would have done research together and talked about what was most important and least risky.  But for free, heck, why not?

What a huge let down by our government...who promised to take care of my husband in case of being injured fighting for our country.  He was abandoned in his time of greatest need.  I felt very alone and betrayed.

Our story has a happy ending.  During a brief time of clarity, Josh agreed to go to the chiropractor with us.  We just started chiropractic care for my son in the Autism Whisperers program at our local Maximized Living clinic.  The doctor offered my husband a free year of chiropractic care in their Veteran's program. 

Within two weeks, Josh was feeling so much better.  He started listening to me about the side effects of his medication and decided to stop taking them..

It was a day that God poured out his blessings on our family....one I will never forget.

I often wonder if it hadn't been "free" if he would have ever tried it.   I know the doctor who offered it to him was inspired to do so.  He didn't have to.

Josh still has the American mindset when it comes to "free".  If it's free, "why not?".  Thankfully, we used that mentality to our advantage to get him chiropractic adjustments....not everyone is that lucky.

I hope and pray that American can wake up from the "free" mentality and see just what mainstream medicine can do to a person.  It's not a joke....this is your life, and the life of your loved ones.  Be smart.  Do your own research.  Think for yourself.  Give yourself the credit the doctors want to take away from you. 

 

Free Health Care- Part 1

Our experience using the hospital and clinic on an army base is not unique.  Most will tell tales of  half-days spent in the emergency room, scheduling appointments months in advance only to get a doctor who never once looks you in the eye, and an endless supply of the cure-all wonder drug Motrin.  But it was free......so it was hard to complain about the lack of worth-while care we received.  We were just lucky to have any care at all, right?

I think back at that mentality and I despise it.  I mean, really?  We have to take the crappy because better care would cost more?  Does it really cost more in the end?  Free doctor visits could cost you your life when over worked doctors having large patient loads cease to care and see you as just another pile of paperwork.

When we first moved to Ft.Benning, fresh with a new autism diagnosis, Tristen was three and Tanner was one.  The perfect age to be pumped full of vaccines at "well-visits".
I was determined to be a "good mom".  No one was going to accuse me of not keeping my kids' doctor appointments!  I had their complete shot records with me in my purse that I had religiously filled out at each visit. 

Plus, my oldest child remained sick with frequent ear infections, fevers and rashes, so I needed to take advantage of our new health system.  I couldn't get him better if I slacked on my check-ups!

I rarely ever saw our primary care physician.  It seems she was always busy...I can only think of three times we saw her in the almost five years we lived there. 
One time in particular, I was fed up with not getting any answers about the boy's unexplained skin rashes.  I had tried everything I could think of at the time....changing soaps, detergents...looking for outside reactions or bug bites.  I was at a loss and wanted some answers.

Our PCM barely looked up from her desk.  If they have rashes, we will prescribe Zyrtec. They can take it every day and it will get rid the rashes.
I didn't understand.  I wanted to know what was causing the rashes.
"We don't need to know what is causing it.  Zyrtec will clear up the symptoms."

When Tanner was just a toddler, he fell on the corner of an end table and had quite a gash in his cheek.  The skin sagged at the site, and although I was certain it would need at least one suture,  I dreaded the thought of heading to the ER.  It was evening and I knew I was in for a wait of around 6 hours for something non-life threatening.  I packed up my boy with toys and snacks and headed for what was sure to be a long night. 
I don't remember at what hour I lost my patience, but it was the wee hours of the morning.  I was tired.  Tanner was tired and his wound had stopped bleeding.  We decided to go home.  About a half hour later, we received a call from the ER doc asking us to come back in.  He apologized for not getting to us sooner.  Because of his persistence and sincerity, I agreed to bring Tanner back in.  The Doc met us out in the parking lot....where he saw his face had healed.  He apologized again and gave me a few instructions and I bundled my little sleeping boy back up to head back home.

The most confusing experience I had at the military clinic was when I had Tanner in for one of his "well-visits".  He had his vaccinations, one shot in one leg and two in the other.  I had not met the doctor or nurses before, but I was used to that.  We were instructed to wait in the waiting room for about twenty minutes to be sure he did not have any reactions to the shot....if he started to have a rash, swelling, trouble breathing or anything, I was to alert the nurse immediately.
I have to admit I wasn't worried.  I did this many times before with him and with Tristen. 

I can't remember if it was the swelling, or red streaks or what.....the deepest part of my soul began to panic and fear the worse...I just remember something was seriously wrong.  In slow motion, I got up from my chair and left my autistic son unattended to get the nurse and they swooped him out of my arms.  Nothing makes you feel more helpless than when your sick child is taken from you and a flood of doctors and nurses are surrounding your child and all you can do is stand there in shock.  I don't remember who was watching Tristen...maybe he followed me into the exam room.  I remember when the tension in the room became calmer and the doctor's face looking relieved. 
She told me, "He should not have the DTaP again.  We can't be sure what it was that caused the reaction, but he should not have that shot again."
I was so grateful he was alive and well....having no idea of the damage that was done deep inside.
A few months later, we are back at our "well-check" with a stranger.  He tells us Tanner needs a booster for the DTaP. 
"But I thought he couldn't have that?  He had the reaction last time?"
"What?"  He gasped as if I had said the most absurd thing he had ever heard.  "Who told you that?"
I explained.
"Well, we dont' know if it was the diphtheria, pertussis or tetanus that caused it.  We can give him single doses."
This didn't make any sense to me, but the doctor treated me like I was such a moron, I was afraid to stand up for myself.  He already thinks I'm a bad mother for suggesting it, I thought.
We left with not DTaP that time, but at our next visit, I was questioned about why he had not received the shot.  I explained what the last doctor had told me, again to another doctor I had never met.
"We can't do that.  There are no single shots.  He should be fine."
My head was spinning and before I could think straight they had injected him with the same poison that caused so much trouble before. 
He had redness and swelling in the injection site and a fever.  All which they said was normal, and they sent us home.

I think back at how naive I was and I am just sick.  Why was I so desperate to do "the right thing"...which was only what society was telling me was right, not what made sense or what felt right as a devoted mother.

If our new health care system ends up anything like the base medical institutions or the VA hospitals/clinics, we are in a world of trouble.  For someone who wants run of the mill, standard, impersonal care, maybe it would be fine for them.  If you are poor enough to have no choice but to wait hours for so-so advice and lots of free medication, it may be enough for you. 
It was not enough for me.  I wanted someone who listened to what I said and actually wanted to help my child.  I needed a doctor who took my concerns and looked for  answers.  So, I started to pay for that kind of doctor out of pocket.  No insurance.  Because GOOD health care, is better than FREE health care.
Free health care never looked into my son's illnesses.  Insured health care never looked beyond the end of their nose to help me or my children's illnesses. 

THE ONLY TIME I WAS HELPED BY A DOCTOR IN MY LIFE ABOUT SOMETHING THAT DID NOT PRESENT AS IMMEDIATELY LIFE THREATENING, WAS WHEN I PAID FOR THE CARE WITH MY OWN MONEY AT THE TIME OF THE VISIT.

Why would I ever waste my time, ignore my gut, and put my family in jeopardy again...because I'm poor and it's free?  Because now I will be fined?

Not gonna happen.

"The Green Bean Girl"

It's simple.
That's what I eat.
I don't want to be misleading....I eat over-cooked green beans with coconut oil and sea salt.  At least four times a day.
Once in a while, I will have some meat for dinner...a small portion. 
My health has depleted in an alarming rate and this is all I can tolerate.
"Why?  What actually happens to you?"  I can hear the accusatory tone.
It is difficult to put into words the reaction one can have to food, when it isn't an obvious reaction.  If you need to carry an EpiPen, you're good to go in the eyes of the world.  If you need a benadryl, they may even offer one to you.  But when you start to talk about food affecting how you "feel" on the "inside"....other than a feeling of full....people look at you like you are crazy and easily brush you off as another "nut-job". 
I can't be too critical...I was the same way.
I won't bore you with a complete history of all the lazy people I've known in my life.  Suffice it to say, there have been A LOT! 
I never understood someone not doing their job, or something that really mattered, because they "didn't feel good".  Seemed to me like an easy way to get out of stuff, and I was determined that was never going to be me.

For me, the worst part of a food reaction, is not being able to think.  I am in a fog where the outside world seems to be crushing me.  I want to be left alone.  I get irritated very easily.  My body becomes inflamed, my joints swell and my insides feel like my organs are in a knot.  My vision is blurry and I struggle with reading.  I have mood swings and do not feel like myself.

I will continue to add some history as to how I got here in the essays to come.

Today, I want to close with this thought:

Not eating certain food is hard.  Only eating one food makes me feel selfish and guilty because of my disdain.  How many children in the world would feel happy to just have something to eat everyday?  ANYthing to eat is better than NOthing.  So I have to step back from my pity-party, because in truth, life  could be much much worse.

What is the right answer?

I don't know why it irritates me so much when people question Tristen's autism.
I should be happy.... a lot of parents out there would love it, I'm sure, if their child's disabilities were brought into question, because that would mean progress.
I get that.
I know I shouldn't complain.
I just can't shake this feeling.  I get so wrapped up in it....which is why I blog.....mostly just for myself....to get these thoughts and feelings "out there" and then I can move on.
Why would someone question Tristen's disability?
Do people think I am dishonest?  Would I lie about something as serious as Autism?  Would I wish for any child to have it?  Would I tell people my children had any disorder that I really did not truly believe they had?
No.

Do they think they know more about Autism than I do?  I'm not saying I'm an expert, but I have dedicated my life to this cause...not only for my child, but others in every community where I have lived...so, I would find it poor logic to conclude the average person has more autism experience and knowledge.

When confronted like this, I feel I need to explain...and when I'm met with speculation, then, I worry I sound guilty, like I'm making excuses.

I've written about how kids on the spectrum are individuals, and do not always fit into cookie-cutter categories:  http://autismhealth.blogspot.com/2013/09/if-youve-met-one-person-hit-by-bus.html

This doesn't help, however, in a social situation outside of the internet.

How do I tactfully sum up a response?  How do I sum up 15 years of consistent hard work and dedication, doctors visits, diet, allergy treatments, HBOT, chiropractic care, chelation, vitamins and supplements.....there is no one key answer to how/why  he is doing so well!

"I guess I'm just one of the lucky ones!"  Fail...yuck...sounds so disprespectful of those whose journey is more demanding.

"You should have seen him before!"  Fail....sounds like a put-down to Tristen, and in actuality, an exaggeration by omission.

"He is vaccine damaged, which is often misdiagnosed as autism."  Ooooh, now that would really get them thinking....AND probably avoiding me from that point on at all costs. Especially the young mothers with lots of little kids and those working in the medical field.  If I could just avoid people that don't agree with my views, it would be easy...but often times I have to edit myself so I can work amicably with people at church.

"He is recovering from autism, due to diet, supplements and detox."  Fail.  I'm assuming they will stop listening at "recovering".  Then, you are just the crazy nut-job who thinks their child can get better.  I probably believe in aliens, conspiracy theories, and santa claus as well.

I don't know the correct response.  It's hard to know how a person you have met recently is going to react to your comments, which is how I have learned to tailor my conversations over the years.
I have many Facebook friends who get tired of my posts about vaccine injury, diet and toxins and simply block my posts, which is better than an arguement.  (When they have an affected loved one, they will know where to find me.)

What most people don't know, is this was never about "curing autism".   I never set out to do that...even after hearing stories of recovered children.  This was about making a sick boy well.  That's it. 

I wasn't afraid he might have to live at home with his family way into adulthood. I was worried he wouldn't make it to adulthood.

Fever after 7-day-long fever......daily vomiting, unexplained rashes...ear infections and illnesses were a constant in our house.  As much as I hate asking for help.... I did what I had been taught was the right thing to do;  I turned to doctors and nurses to help me help my son.

They told me I was over protective.  They told me to stop calling unless the fever was over 104 and lasted more than 7 days.  When I called then, they told me to alternate Tylenol and Motrin every four hours.  I cried out for help from dozens of different doctors in three different states and no one had any answers....and crushingly, no one really cared.

My first internet research was not about autism.  Autism I could handle....I had figured that part out.  It was this constant sickness keeping him from school and being a happy little boy. I watched helplessly while he layed on the floor lathargic for yet again another episode.  I really really needed answers.

I read about childhood illnesses.  I tried to find something that fit.  I knew there was something everyone was missing.

My mother-in-law bought me the book, "Changing the Course of Autism" by Bryan Jepson.  I hadn't read any autism books up to that point, even though Tristen was 9.  I was focusing on illness, remember?  I could handle the rest.  I just couldn't watch him wither away in front of my eyes. 

When I started reading this book, and learned there were other children out there like my son....children who were autistic, but more impressivley, they were sick...my mind was opened up to a whole world I never knew existed....a world where doctors acknowledged what a mother said and did  crazy things like TESTS!

That was all I needed to know and I was on board.  I set out to find a doctor who would treat my son.

The rest is great history....and I guess, I sometimes forget where we started, as we sometimes do as parents focused on progress.  We have no defined "goal"...as long as progress is being made, we are happy. We have been so very blessed from the Lord above with miracles touching our small, insignificant family.  None of this would be possible without Him.

We're all on a journey....whether autism is a pit-stop or along for the entire ride.....we can never really know what it is like walk in someone else's shoes.  We must be empathetic and non-judgemental.

It's so interesting to me how things have changed....in 2000 when we got the diagnosis, we had to explain autism because only a few people had even seen RainMan.  Now, I am argueing with other's perception of what autism is and am grilled about my practices and treatments.

I guess I'm still not sure about what the right response is.  The first step, I guess, is not being so shocked by it, so I sound befuddled in my explanation.  And, not worrying so much about what other's perception of me is, and simply stating the truth,  would help as well.

It's so much easier talking to those who I don't feel I'm trying to convince.  I just tell it like I see it.  You don't have to agree, you just have to respect my journey.