UUGGGHHHH!!! - Mind Dump

Let me preface this post by stating that I am in no way trying to bash anyone, or say that if you aren't doing what I am doing then you are wrong.  This blog is about our family's journey, and this is simply a part of that!  It is our own experience, and everyone was made to have different experiences!!  So please do not get offended or become defensive as you read this part of our journey.  But please, read it with an open mind!!




One thing with autism is that it is such a roller coast ride.  You feel so defeated, ready to pull your hair out, counting backwards from 10, feeling like throwing something one day, to the next feeling on top of the mountain, exhilarated, as though you can tackle anything at all!!  Sometimes you feel all of those in about a 10 min span.

Friday night was one of those mountain top experiences!!  In the last couple of week's Naomi has made so much gains with her speech and some of her social interactions.  And Friday I was simply lavishing in that!  She was up late, hanging out in my bed with me and was just talking a ton!!  She was talking TO me and not at me, which is a big difference.  Really seeking me out, trying to get my attention, and eager to share her experience with me.  Sat was a mid way day.  A few small bumps with a few small encouragements, so all in all an average day.  Sunday night was a rough one.  It was a long fight trying to get her to take her juice with her meds...and the thing with them is that once you begin a 'fight' you can in no way back out...no matter how long it takes...ours took an hour and a half at bedtime!!  Then all day today was another frustrating long day with potty training.  Potty training an autistic child is nothing like potty training a typical child...I know...we have two that are out of diapers already!  And every 3 out of 4 trips to the potty today, that happen every 30 min, was a 30 min long battle.  So pretty much we were in the bathroom for about 90% of our time from 9am to 2pm today.

Then, as daddy took the girls to Little Gym, momma got to sneak a much needed nap!! Only to be woken up with news that was the 'needle that broke the camels back' for today!!

Back in January we took Naomi to see a specialist (more details on all of that on another post) and had a slew of lab tests done.  A ton of blood work as well as 3 different labs to test her urine for different things.  We received one of those results back today, and it sort of side swiped me!!

One of the things more recent research (within the last 10 yrs) has found is that a small percentage of children with autism actually have antibodies that are attacking the blood vessels in their brain.  Which as you might imagine leads to some issues.  Since it was a smaller percentage, and not something that we really talked a ton about at her appointment, it was really something I hadn't been dwelling on that much.  And honestly, it has been quite a challenge already getting used to and keeping track of all the current things we are giving Naomi that it has taken up most of my focus when it comes to autism related things.

Good news is that the doctor we chose (rather, God placed right in front of our noses!!) for Naomi is one of the leading researchers into the treatment of this issue.  So though it wasn't the best of news, it was OK!  I already have an appt scheduled with him to discuss these results, he had called me to sched as soon as he received the results back, but hadn't given me any details.  I honestly didn't even know what lab result it was.  The only one I thought we were still waiting on was one that had more to do with finalizing what all her GI issues are!!

The thing that really knocked me of kilter with this was my research after I got the lab information.  First thing I did was pull out my book from the conference I went to in Nov because I remembered there being a presentation with this in particular.  Then I went to good old trusty GOOGLE.  I had wanted to look some details up on what this meant and such so that I could make the most of my appt with our Dr tomorrow.  After dealing with my own rare disorder I learned the hard way to do the research before you talk to the Dr so that you know what questions you might want to ask, instead of simply just listening to him. Although, our Dr has been WONDERFUL with accessibility and communicating with me.  Even on the weekends he has responded to emails I have sent him!!

Back to Google.  So several search results with helpful information came up for me...but then some of the ones I clicked one were not so helpful.  In particular one where this guy was totally bashing our actual Dr.  as well as parents, like us, who aren't simply doing the behavioral therapies, but are looking at our children as a whole package.  Because, clearly, there is more going on in their bodies then just some simple  'brain wiring' gone bad!!

I haven't been on this road very long...perhaps some of you reading this are much further down the road and could certainly teach me a thing or two, or ten!!  But one thing I noticed within 3 weeks of being thrust into this world is that there seems to be a distinct separation, and perhaps you can even call it animosity, between the traditional camp in Autism, and the 'edgy', 'rebellious' camp of the biomedical croonies, usually a part of the organization 'Defeat Autism Now' (DAN)

I became a 'DAN' rebel by accident!  Right away one thing I was certain we needed to do for Naomi was the  foundational ABA therapy, there was no question in that.  And really that is where the traditional camp stops with their treatment.  Unless your child has epileptic seizures, or some other very obvious, undeniable, in your face, sever medical issue going on, they tell you nothing else can be done.  No other tests on Naomi's body were ordered by the doctor who diagnosed her.  We ran some allergy and GI exams because based on my reading I felt Naomi fit the bill pretty good for these issues.  But that was were the buck stopped with us because Naomi was otherwise a 'typically' healthy child.  I guess for a kid who has antibodies attacking her own brain cells, we'll use that term loosely.

We started the Gluten free/ Casein (dairy) free diet for her again based on my own research...because our original doctor didn't even bring it up.  But book after book that I kept reading and research on the internet kept pointing to it.  And Naomi had several of the red flags to be a perfect candidate of the diet making a difference for her...and sure enough it has!  But I wasn't sure how I felt about the whole DAN clan.  As a matter of fact, a pro DAN book that I read by Jenny McCarthy is what really turned me off the most from them!  Odd, I know!  Well in late October I had just finished a book on autism and it was the third or so that really kept mentioning about going to conferences at least once a year.  So I decided to look up conferences and found there was one coming up just a cpl of weeks away.  I didn't know anything about it except that it was hosted by the National Autism Association...it sounded harmless enough.  It wasn't an 'DAN' conference, so I figured I'd go.  Well. It basically was a DAN conference, and I am glad that God placed me there!!

Turns out a lot of my ideas about DAN were some big misconceptions.  One of my issues with them was that a lot of what you read about them, mostly negative, made it seem as though they were coming, not even out of left field with their stuff...but more from the parking lot behind left field!!  There was no science or evidence whatsoever to support what they were doing, and they were just some over priced doctor's that insurance wouldn't even open the envelope the claim forms came in throwing everything they could think of you get you to spend your money while promising some miraculous cure of autism!  Well, not true!

Sure, I am sure there are some doctors out there that would fit that bill, just like there are regular doctors that do that, like there are preachers that twist the truth, and politicians that get elected, right?!?  But that is why you have to do your research, word of mouth, etc before just signing up with anyone...I am so glad that God took all of the guess work out of it for us and really 'smacked us in the face' with our DAN Dr for Naomi!!

But when I heard the presentations at the conference as well as at our appointment with our own Dr I learned that is not the case at all.  It may not be extensive studies, but there are quite a few done to back up most of what they are doing.  Considering that Autism has really only come on the public radar within the last 10 yrs as well as it being one of the least funded health issues, even though more children will be diagnosed with autism this year than AIDS, cancer, and diabetes, COMBINED, it actually has a good amount of research done on some of these treatments.  And there are exams that you can do to put you on a specific track of what treatments to try with your child.  One of the first things our Dr said to us is how most people think that DAN Dr will throw everything and the kitchen sink at you, but how that is not true.  Everything Naomi is taking right is based on lab results that came back showing what her body was producing too little of, or too much of, or not breaking down correctly.  And we implement one thing at a time.  You do your treatment in steps, and only go as far as you choose to or as your child needs to.  Some kids only with the diet changes and supplements will improve significantly.  Others it might take more medical things and invasive things to get them to respond the way you'd hope.  And our Dr didn't promise us any three step miracle at all.  He was very clear that not all treatments will work for all kids, another of the great mysteries of autism, and that they won't work to the same degree.  So he did NOT in any way produce any sense of high expectation, no miracle cure!!  And he was also very clear that ABA is foundational...and that in no way should we stop doing that!  He stated simply that the supplements and treatments we might do with Naomi will simply allow her to maximize and really learn what ABA is supposed to teach her!!

So go ahead and call my doctor a quack, and label me a loonie.  But you CANNOT argue with me, my husband, our friends that live with us, her tutor, heck, even our 6 yr old and Naomi's ABA data, that what we are doing isn't working.  The research in the labs and controlled environments might not be extensive....but the one within the four walls of our home is!!  I am not saying that every treatment out there is legitimate, nor even that the all of the ones that are you should run out and try with your child. But you shouldn't turn away from it either simply because mainstream science and insurance companies say it isn't real medicine!!  Do your own research, see what symptoms your child has that adds up with certain treatments.  Start small with the diet prhaps and some vitamins and supplements.  Add one thing at a time and see if you notice any changes, document it all so you can track it!  Don't tell the people who work with your child that you are trying these new things and wait and see if they report any changes.  We never let Amanda know when Naomi has gotten into gluten, or when we add anything new to her regimen.  That way we know whatever she says about Naomi's behavior and progress her observation with out any biasis. If you start to see improvement than perhaps at that point you'd feel comfortable making the necessary sacrifices to go and see a DAN Dr so you can take it to the next level with your child.


GO TO A CONFERENCE!!  It is a lot less expensive then a DAN Dr appointment and soo informative.  It will certainly provide you with enough information to help you get started and perhaps choose a thing or two to try at first and see how it works for your particular child. If nothing else you get a few days away (with a legitimate excuse), get to meet other people that go through what you go through, and realize if nothing else that you aren't crazy and neither is your child. In the autism puzzle you fit perfectly!!  And you will leave refreshed and perhaps for the first time able to smile when thinking of some of the crazy things that make up your every day simply because you realize you aren't the only one!!