Can I Rant about Medical Bills? Please?

*You totally do not have to read this rant. If you have one of your own, I will read it. Because this is too hard to go through alone. Leave it in the comments. Or email me. I get it. 

So there are tough things about being a grown up. I completely understand that. But add AUTISM and things become downright unjust. Unfair. Cruel.

Do any of you feel this way?

Maybe this is the case with all medical bills but let's talk facts. I have never felt disgruntled over paying medical bills. Truly, I have not. Pay for the hospital stay that brought my three, sweet, darling babies to me? No problem! Those nurses deserve every penny after having to care for a post C-section mom let me tell you! It's gross. I'm gross. Anyways, back to the point. Bills for therapy when it's not working? Downright painful.

We went on blind faith and have been following the medical advice of an N.M.D.* (My brother is still trying to convince me this stand for Not-an-M.D. but anyways...) a naturopathic medical doctor. The one that gave me hope. That said he could cure my son. "We don't care about the cost if you can heal our boy," we said. And technically, that is true. But here we stand, thousands and thousands of dollars in and nothing...yet. And still we wait.

Now, if I sound like a fool, maybe you are right. But, unless you are dealing with the loss of your beautiful, perfect 5 year old boy thanks to a monster called autism, you cannot possibly understand the lengths we would go to to get him back.

A few weeks ago we got a medical bill from one Genova Diagnostics. We sent my poor, sweet boy's urine sample there. TMI? Sorry... Anyways they tested it for one million things, all of which our insurance company say are not legit. Antioxidants, B-vitanins, Minerals, etc:

Here is my super high-quality picture of our little guy's test results. If you look carefully you can see my super fancy, flannel pajamas in the right corner...

So we get a bill from them for $350. To us that seems totally reasonable. Of course, insurance will not pay for any of it so we send them the entire amount. Yesterday, we get home just to open another bill from them for an additional:

Our weekend ruiner

YES! I repeat an ADDITIONAL $1053.03. And of course it is the weekend and we get to stress about this all weekend and hope it is some horrible mistake. 

You stink Genova Diagnotics. I really hope you are not a huge scam/waste of money/waste of time/waste of hope.

Are ANY OF YOU going through stuff like this? Is it just us? We can't give up hope but we really feel out of places to look.



*Remember this post? http://iknowwhyautismsucks.blogspot.com/2017/02/finding-cure-pediatricians-vs-dan.html

The Beginning and Why I Can Confidently Say Autism Sucks

Autism Sucks.

When my husband and I found out we were pregnant with our first child we sat down and had a very serious talk about what his/her life would look like. One of the first things to go was the word "suck." I mean, it's vulgar and crass and the thought of that word coming out of the mouth of a perfect, precious, innocent baby to mean anything other than wanting to latch onto its mother is pretty much horrifying. So along with any movies we thought could taint the atmosphere that would shelter this perfect being that was forming inside me, "suck" went out the window.

It was a boy.

Have you ever seen a more beautiful profile???

Naturally learning this lead to another serious sit down with my husband. After all, we had to set realistic expectations for the future life and accomplishments of this tiny fetus. First, he would be speaking and reading at an early age. His mother did. So obviously... Math would be another strong suit. His Dad was studying constantly for a master's exam and clearly that was rubbing off on the baby.  And after highschool our alma mater where he would be the star point guard for BYU's basketball team. Of course he would be tall and handsome. We weren't sure whose genes that would come through but it only made sense. And then a successful career as president of the free world would top the list. Marriage, wasn't necessarily in the cards because he would probably want to spend most of his time with me, his mother. If this sounds overbearing and unhealthy to you, you're right. But this was my reality.

And then autism.

At 20 months our son stopped speaking. He wouldn't look at me. Hug me. Turn when I called for him. Up to this point everything had been running smoothly. After a 26 hour, terrifying birth that is only fitting for the baby that would be the man that would be the legend. He was born via an emergency C-section. He came out fist first. No kidding. As soon as they cut me open the first thing to pop up was a startlingly large fist. And he was beautiful. The most beautiful mortal. Check.

22 months.

Still not talking. Or calling me Mommy. Or looking at me. Or yelling up the stairs "Dadddyyy where are youuuuu?" Clearly he was just mad at me and everything would be fine soon. After all, I had the audacity to bring him a baby sister. And little boys don't like babies, or dolls or their mother's attention being split when he was so glorious I could have just spent my whole day looking at him. My mother-in-law came to visit. She was sure it was the milk. After all my husband was allergic to milk. I of course had no idea because he happily polished off a large bowl of ice cream every night before bed. Could have fooled me. She said it seemed like autism. And then she sent a book in the mail. It was called "How to help your autistic child." I was mad. Rightfully so said my Mom. How could she think that? Clearly there was no intellectual disability. The boy had his alphabet down pat by 18 months. Check.

Developmental delays they said.

Yes, I took him in. But I was sure they were wrong. How could they say. He was JUST 2. I mean just. They were judging him like they would a 2 year old and every good mother knows what a big year 2 is. Between 2 and 3 you become a man or something like that. But still I set up early intervention services. I mean better safe then sorry. And if they wanted to give him another leg up when he was already clearly a genius, be my guest. We didn't have developmental delays in my family. We were all in extended studies. And honors classes. And, and.

Is he a stuffer?

His early interventionist asked me this casually one day. Yes he shoved as much food as would fit into his mouth at once. Hearty appetite. Growing boy. Big plans. "I can tell" she said. "It's a sensory need." I think this shocked me because it was proof maybe she actually had some insight. After all, how could she know?

Stubborn.

Of course! That was it. He was stubborn. He was still upset about us having another baby. It all made sense. He was misbehaving. He was manipulating me. Boy was he smart. He knew just what to do to get me where he wanted. Ignore me. Pretend I don't exist. Ha ha! I got it now. And sure being stubborn seems like a less desirable trait. But not for my boy. Sure it was a pain now but boy would this serve him well in the future. No flip flopping for him in his morals, or his political campaign for that matter. This boy was stubborn. Stubborn or just strong? This would certainly be counted among his virtues one day.

3 years old.

Well this is really skipping ahead. But I went through it all. I needed to be a better disciplinarian. And also more kind and patient and gentle. But firm. Not letting him get away with things. And no more milk, or gluten while I'm at it. It was the essential oils he needed. Reflexology anyone? 3 years old loomed like a dark and horrible cloud. He couldn't be almost 3. I held on to 2 as long as I could. It was how I could explain it to others and to myself. He was still just 2 after all. Practically a baby. And we had done everything we could think of. And everything my Mom could think of. And everything her friends could think of. And everything the Internet could think of. He had an occupational therapist and a speech therapist and an early interventionist. And for good measure a dietician and a naturopath.

Autism sucks.

No more saying Mommy. No more laughing together. No more white house. It was painful. It is painful. Almost as painful as no more saying Daddy. Or pretending to talk to Grandma on the phone. Or telling me about ho'ho's (horses). Or saying bye bye. Or being excited when I walk into a room. Or being sad when I leave one. Or or or.

Pictures from here on out look about like this. Him running away. Me running behind with the camera trying to capture someone I love more than anything. 

Vegan, Ancient Grain Gut-Healing Recipes that have Worked for Us So Far

Okay, as promised here are the recipes/products that we are liking:

Cauliflower "Chicken" Nuggets: http://www.onegreenplanet.org/vegan-recipe/crispy-cauliflower-nuggets/

My kids are not easily fooled and they LOVE these. Like ate every one and I got to sleep that night instead of worrying about them being hungry!

I served these cauliflower nuggets with another life-saver for me, Trader Joe's ketchup. I didn't even know my kids liked ketchup until we started this diet.

Pretty much they dip everything in this. EV-ER-Y-THING

Another Trader Joe's win is these crunchy lentil curls that we lovingly call cheetos:

Not sure how packed with nutrients these are but when your son needs a crispy snack give him these and he will feel like he's really getting away with something

We have been eating a lot of oats. Which brings me to this recipe: http://minimalistbaker.com/toasted-coconut-baked-oatmeal/. I have actually used and loved dozens of recipes from the minimalist blog so scroll through if you are going on this vegan, ancient grains diet like me. The only change I made is I left out the dried fruit and I sprinkled just a little brown sugar on at the end. I could have eaten the entire pan of this myself!

Coconut oatmeal bake

Two spelt recipes I want to include here (I never thought I would be saying this let alone be aware of what spelt is....): Spelt bread https://natureslegacyforlife.com/recipe/ancient-grain-wonder-bread/

The reviews for this are terrbile! I have no idea why. It's not a sweet bread so don't expect that. We use it for toast and sandwiches and it's yeast free which we needed. I sliced it up, stuck it in the freezer and get it out regularly, toast it and drizzle with honey whenever my sweet little guy needs a snack. Delicious!

and this spelt flat bread that we use in place of tortillas: http://ohsheglows.com/2014/04/14/easiest-5-ingredient-spelt-flatbread/

Last night I used these to make these vegan breakfast burritos wrapped in the above spelt flat bread: https://delightfuladventures.com/vegan-breakfast-burrito/  (Ha! And I just realized this is another minimalist baker recipe. She's good.)

I swear these made my husband fall in love with me all over again. The avacado slaw is mucho delicioso. 

And finally, this chocolate milk:

Honestly, not 100% sure if this counts in our diet, I will need to see if there's added sugar, BUT it's non-dairy and I use it to pour my sons vitamin concoctions into and he drinks it right up so for us that's a HUGE win!

We are still looking for ideas! I will continue to put recipes on here that I can get my son aka the most stubborn, picky human being on the planet to eat. And PLEASE send me your success recipes!

IEP MEETINGS = HELL

Okay, okay, hell is another word I probably shouldn't use. I definitely don't want my kids using it. But what else do I say. The last one almost drove me to Marty's Cheap House of Booze... okay not really but it's kind of become our thing since then. "My day was so bad I may have to take a trip to Marty's".

Anyways, Marty's (cheap house of booze) is on my route home from my son's gradeschool. I wish he was at the beautiful, award winning grade school 3 minutes from my house but for us it's not to be. #autismsucks. Instead, I get to drive a 30 minute, winding, backroad's route to a school with a more intensive autism program. And that is the sight of hell, ooops I mean my IEP meetings.

This last one was especially a doozy. After 3 years of special preschool programs our boy is starting kindergarten. For me special ed kindergarten=special ed real school=no college=my life and his are over.

Anyone else have to go through one of these? Do you bring someone with you? What do you do afterwards? How do you prepare? Help!

Finding a Cure: Pediatricians vs. DAN doctors

I have always been a fan of western medicine. I require C-sections and without it my babies and I wouldn't be here. And my brother is a surgeon. And my dad is a healthcare lawyer. And my husband does provider contracts as an actuary for traditional, health insurance approved doctors. So I think it is safe to say traditional, western medicine is the family business. (Insert godfather joke here) Until they told me they couldn't help. Not when it comes to autism. The disease I wanted a cure to more than any other. Who did this you ask? Let me see:

The neurologist who told us there was no such thing as autism doctors. That they couldn't be responsible for autistic kids anymore even though it's a neurological disorder because there were too many of them. 

Every pediatrician ever. "We can't say if he will get better or not" they say. "Never do know" they say. "Try ABA therapy" they say. "Some get better and some don't." 

The very expensive developmental pediatrician. 

A child psychologist. Or two. Or three. 

NO ONE WOULD HELP US. So without hope we tried to figure it out on our own. As any good parents we did ABA with varying levels of success. We had one amazing therapist who made great headway with our son but then moved away. The rest were expensive with no results. And I mean no results over a 4 year time period. 

So we were done and frustrated and losing hope. 

My mom called me one day after many, many days of discouragement and disillusionment. Please call this quack, ahem naturopath she said. He is a DAN (defeat autism now) doctor. My friend swears by him. He says he can help. So we did it. And he gave us hope. We sat and told him the entire story, my husband and I. He listened and nodded and said he understood and he had seen it a million times. And then he said, "I can reverse this." We almost passed out in shock. "I can help your son."

Well if you are here looking for a conclusion I don't have one yet. We are doing everything he says because if nothing else he gives us hope. 

Don't ask me if it was vaccines because I don't know. 

But I used to say it wasn't. Because I trusted western medicine. I literally put my life in its hands many times. But when it comes to autism is has more than let me down. And my son down. And my husband down. So we are branching out. Stay tuned. 

Autism Diets are Hard: From Corn Free to Vegan and Ancient Grains

So these crazy autism diets are hard. Do you agree?

For a LONG time, I mean for about the last 4 years I was completely and totally and absolutely opposed to these autism diets. I cooked and baked every day. Home cooked meals people. I had a reputation for making delicious food. Just sayin'. Anyways, if it was the food causing autism it wouldn't be my kid with it. He had a home-cooked, sit down dinner every night. It would definitely only be those kids who lived in front of the tv eating McDonald's.

But then... we were dealing with autism. And we couldn't figure out why. So when one day I got a call from a good friend suggesting the corn-free diet I thought I would give it a try. Corn free sounds like no big deal right? No popcorn or corn-on-the-cob and boom you're done. Nope. Try again. It meant NO processed food. None. There was suddenly not one thing I could just go and buy from the store, open and eat right away. It meant cooking everything from fresh, whole ingredients. And I liked the sound of that. So if we needed diced tomatoes, I would buy fresh, whole tomatoes and dice them up. Good bye cans. And if we wanted beans, I would soak some over night. Goodbye chemicals from canned beans. I liked it.

And it worked! I mean my son wasn't cured but he was better! No more throwing himself down the stairs. And really, we all felt better.

So then, when his DAN (defeat autism now) doctor suggested an even more restrictive diet I finally gave in.* But this time instead of just cooking from any whole ingredients we left behind ALL animal products (aka went Vegan in the 30 seconds it took for the doctor to ask us to try it). And also no gluten. Oh! And no yeast. It turns out my sweet boy has leaky gut and we need to fix it. So goodbye sweet delicious breads and whole roasted chickens and chocolate chip cookies. Hello ancient grains and toffuti. (Yes tofutti, not tofu. We still haven't gone there but we do use the tofutti sour cream and cream cheese.) And hello ancient grains that make baked goods into dust. Dust I say! We made chocolate chip cookies out of teff flour the other day that went into the wind when we sneezed. And I want my muffins to be moist and delicious. (Old Golden Girl's reference...anyone? anyone?)

Step one was buying a mill to mill my own flour. I innocently assumed this would allow us to go back to life as normal. I would mill flour and presto! I could make anything I made before. So I ordered this:

AND every ancient grain under the sun.

And please, please, please if you have any good vegan, ancient grains recipes will you send them to me? And if you need any will you please, please, please email me? I will send you our favorites so far. We moms need to help each other out.

So one day I was feeling especially down about this dang diet. My sweet boy was pretty much boycotting any and all food I offered him and he's skinny to begin with. I was having dreams he became wind when I sneezed just like those dang vegan "chocolate chip cookies" dust piles. I was about ready to give up. His food strike worked. And then I made this kamut bread.* And, and, and.... HE ATE IT! Granted, it was smothered in honey but he ate! And I was renewed. (And so was he :) )

So here we are today, still milling and making ancient grains and trying to be vegans. And we could use help. And if you are still reading this, you probably could too! So help me, and let me help you. Share any ideas, recipes, etc. in the comments!



*DAN doctors vs Pediatricians is a WHOLE other post
*I can't find this bread recipe now but if you want it I will find it!


UPDATE!!!
I realized after posting this I HAD to include this to help any of you moms trying to make your way through autism diets:

These will help you! These will be your best friend. They are $5 a bag at my store which is pricey but we use these alot! Throw them in some bread your kids want to smuggle to another country and they might just change their minds!