Wishing for a Crystal Ball....

Our thoughts can be our worst enemy sometimes!!  I can be having a decent day and out of no where a sneaky thought will come in to my mind that will make me fight back tears!!  Just had one of those moments!! I am was sitting here in my kitchen with the kids doing some work (I work from home) and Naomi came up to me and said 'mo cee-eal' which in and of it is self is pretty exciting...that she now knows she can interact with us and voice her needs and she will get a response.  So I gave her some more cereal, dry.  Well, then she said to me 'want milk'...which is also very exciting!!  Probably about two/three weeks ago she started doing this more consistently, using two word phrases, and without being prompted and entirely on her own requesting things from us.  So that has been something we have been celebrating and as she requests new needs or unprompted communicates with us in new ways it is always a reason to celebrate.

But even as I celebrate such occurrences, in the back of my mind I try and hold back my excitement!!  So annoying...I don't mean to, I don't even think about it when I do it! I don't want to shift my focus from a positive and happy moment and think of a gloomy one!!  Why can't we control our thoughts more!?!  The Bible tells us to (2 Corinthians 10:5), but I haven't been able to master that yet.  But there it was, making me focus on it, bringing me to fight back tears, not allow them to fall down my face.  "Is this the most we will ever hear of her."  I have mentioned this before, but I think one of the hardest things with Autism is the unknown factor.  The fact that no one, whether a mainstream doctor or a DAN one, not her BCBA, not her tutor who is with her 30+ hours a week, no not anyone can tell us what outcome to expect 6 months or 6 years from now.  And that for me is so hard.  To take things one day at a time.  I am not sure why, if it is a control issue, or simply a 'guard my heart' issue. 

Naomi is such a gift to us, just as she is today!  She adds so much to our family and we need her, love her, and want her with us, no matter what.  But I hate having to play the 'what if' and 'I wonder' game with so much of her future!!  So at times it's almost like I check myself in these great moments, the exciting ones where we see progress, to not let my hopes get too high.  Mostly, because I want to protect my heart I guess.  That is why I wish I had a crystal ball.  

If I could  just know what the future held for her, than I could relax.  Enjoy each of her milestones for what they are, what they bring to this present moment, and not try to decode them and see if it is a sign of greater things to come, or if it is the greatest we will see!!  

And that thought creeps in soooo often, too often!!  And Naomi doesn't even have to be around.  The other day Joelle and Isaac were playing while Naomi was at therapy.  They had built this obstacle with our couch cushions and were taking turns rescuing each other.  As Isaac was pretending to need help Jojo said, 'I am coming Isaac!  I will save you, I am a super hero!!'  It was so cute, it warmed my heart and maed me smile.  Then, totally unexpectedly and all too soon the moment was taken away from me with the thought 'will I ever hear Naomi say something like that?'  Then this week Joelle and I went shopping for some things Naomi needed for therapy.  As we walked around the store she'd make comments like, 'Momma, this is so beautiful' and 'Is this for Naomi momma?  She is going to looooove it!!' or 'Oh momma, this is going to make Naomi so happy!'  And again, as we were driving home those thoughts came into my mind.  Will I ever experience something like that with Naomi??  Well, I figured I can at least have  a modified version of it, so two days later I brought Naomi with me to the store.  The trip didn't quite bring the mother/daughter experience I had hoped for.  Naomi was fussing to get in the car, which she usually doesn't mind, arching her back and such.   Then when we got to the store she had to go in the shopping cart and the first item I grabbed I had to open and give her some to not start one of the never-ending tantrums.  And then, at the end it took me about 2 min (which seemed like 20 since a guy was standing there waiting to grab our cart) to take her out because she didn't want to leave it.  She kept squeezing her legs together so that I couldn't take her out of the seat as she cried/screamed.  

I am okay with whatever outcome it may be!!  Even as she is today Naomi already adds so much good to our lives and is a special gift to us!!  Yes, it is a lot of work, but it is a labor of love that is certainly worth it!!  I guess mostly I just want to place hedges around my heart and protect it from the pain of disappointment and broken dreams.  I guess I believe that if I know what her future will be like I will spare myself from dreaming big dreams for her, just to have to give them up 5, 10, 15 years from now. I guess I think somehow it will be less painful that way!!  

                                            

                                                 I know, kind of corny, but the best illustration I could find of God's hands!!

But even as I think that, I know God wants otherwise.  Instead of a crystal ball He wants me to have the peace that surpasses all understanding! Phillipians 4:6-7  He wants me to place my dreams, my heart, my trust, and my Naomi in His hands.  I know that this hard part, this unknown, God is using to bless us through as well.  This journey even without knowing the destination, perhaps especially because we don't know the destination, will bring about many lessons and blessings in and of itself.  Even as I sit here and think, I see that this is something that I have struggled with since young and that God wants me to work on.  To trust Him entirely!!  To trust that He truly does want what is best for me.  And that even in the pain and disappointment He will work things out for my best.  That even if there are broken dreams, to trust that He will be there to help us pick up the pieces, and that in turn He will turn those pieces into a beautiful mosaic that we wouldn't see otherwise!!

 

So instead of wishing for a crystal ball, I will go pray instead, and hand it over to God.  Again, and again, and again!!

Dr. Dan the Bandage Man!!

In the last couple of posts I have shared about Naomi seeing a specialist in Florida, and the fact that we are giving her different things right now.  So I figured it was time to formally introduce you guys to Dr. Rossignol.  

First, a little bit of a background of why we'd go all the way to Florida for a doctor for Naomi in the first place.  Especially since here in Cleveland we have some great neurologists and one of the best schools in the country for autism.  See, there are 2 camps in autism.  The traditional camp that says that autism isn't treatable.  It is strictly a neurological issue that you can only do intensive behavioral therapy, such as ABA, in order to help individuals diagnosed with it.  The prognosis for children are that the sooner you start ABA, in particular before the age of five, the higher percentage you have of your child improving significantly if not to the point of being completely typical.  At best you get a 50/50 chance of improvement, with no one being able to tell you what your child's future can look like, until it comes to pass.  One of the great mysteries with autism is how inconsistent and different it is with each child.  

Then there is the newer camp that says that yes, it is a neurological disorder, yes ABA is the foundational way to treat it.  BUT, there are also a lot of other things going on in the bodies of the children with autism.  So many have stomach issues, different autoimmune disorders, low levels of different vitamins and minerals and supplements.  A lot of them their body's ability to cleanse itself out of toxins doesn't work like a normal person's would.  And so this camp, mostly known as the Defeat Autism Now! organization, say that if we can treat all the other biomedical issues these children are dealing with, we find that they start to learn more from the behavioral therapy, and improve more and faster than if we do nothing at all.  And for whatever reason, which really I think is sad, these to camps don't get along very well.  

So back to how we found Dr. Dan...or rather, how God led us to him!!  From the very beginning of our journey I jumped in reading and researching as much as I could.  I knew that I would have to be VERY proactive in getting Naomi help.  I couldn't sit around and wait for Drs to tell me what to do next, I'd have to do my own research, educate myself, and fight on Naomi's behalf.  Right off the bat, when researching even before Naomi's official diagnosis I saw the riff between the traditional camp and the DAN camp.  Since every article I can remember painted any Dr and/or parent associated with biomedical treatments in a VERY negative light, I recall right away having some negative misconceptions about them and thinking we wouldn't be going down that road with Naomi.  But I also kept coming across a lot of information about the gluten free/casein free (GFCF) diet.  Which even this most of the people on the conservative side don't agree with.  Then, one of the first books I read, the mom was very pro using bio medial interventions for her son.  And it was very informative book, where she really broke down what to look for, what exams to ask to have done and what supplements and such to try.  This mom had been a missionary with Navigators and saw her son's autism the same as we did.  Simply that it was something God had allowed to happen to them, and if so then He'd carry them through it and blessings would come from all of it.  I was confident that she wasn't simply some desperate, bitter parent that didn't want to accept the cards dealt them.  I still wasn't ready to go down that road, though at this point I remember putting on the back of my mind as something I'd look into further once we were more 'settled' in this new journey.   We did decide to start the GFCF diet with her because she had a LOT of symptoms that made her seem as the perfect candidate for whom the diet would make a difference.  And sure enough it did.  It wasn't a miraculous 'my child is now perfect' kind of change.  But significant enough that we decided to keep with it.  

Fast forward to Oct when we were more settled, some of the bigger decisions behind us with Naomi.  I kept reading through this whole time and several books kept saying you have to go to a conference or two a year.  I looked up conferences and one was coming up within a month.  Jerod and I thought it'd be a good idea for me to go.  Both for information to educate myself to continue our fight  for Naomi, as well for encouragement for myself.  The books also kept talking about the connections you make with other parents that know exactly what you are going through, and since I had been struggling with discouragement and loneliness already, it seemed like a win/win.  The conference I had found was called the National Autism Conference.  I hadn't really noticed anything connecting it with DAN, since I really didn't want to go to one of those yet, if ever!!  

But, when I got there after the first meeting or two I realized that is exactly what I had gotten myself into!!  But from the first night, when we had a social mingle, I could see God working already. He directed me to a table of 3 lovely women that would become my conference pals and great encouragers for the days to come!!  Then the next night I met Dr. Rossignol.  He was doing a Q&A session with some parents that he had been working with their little boy for a year and saw some AWESOME improvements.  Just before the talk started he came over to our table to find a place to eat dinner.  In spite of trying to scarf down his food and get ready for his talk he was very polite to us and kept answering several questions we had for him.  I remember thinking as the parents shared a video about their son and spoke about the diff issues they dealt with each day prior to his treatment beginning how much like Naomi he seemed!!  Then as Dr Dan shared about the medical issues behind some of the behavior and how they were treating it I remember thinking that Naomi had a lot of those same symptoms.  The little boy had been doing ABA for almost 2 yrs when the video had first been shot, then to see the video of him currently, and the progress he made in less than a years time was amazing to say the least.  And very encouraging to me!!  I went up afterwards and was one of the 100+ parent that had some questions for Dr Rossignol in regards to Naomi.  And I remember just this sense that I could trust this guy, he wasn't a quack, and he relaly knew his stuff.  He wasn't simply grabbing in the dark for random things to try with no rhyme or reason.  He was very knowledgeable on what was going on in the bodies of these children and diff ways to treat the issues.  For the first time during the conference my guard and skepticism about all things biomedical and DAN related went down.  

Then the next morning Dr. Dan won over my trust in him completely.  At the beggining of his 'official' talk.  He shared about himself some, what got him on this path.

Cute isn't it??  Wasn't my idea though, Dr. Dan shared this book with us at his presentation at the conference.  He shared how ever since he was a little boy, he knew he wanted to be a doctor!!

Dr. Rossignol had been a regular family doctor for many years.  What caused him to cross over to the 'dark' side filled with criticism and nay sayers that is the bio medical treatments of autism was that his two boys, the only 2 children he has, were diagnosed with autism.  Being in the medical field gave him access to do research and dig deeper into this new world he had found himself in, one that he wasn't given very many answers in the first place by the experts at the time.  But what really let me know Dr. Dan was the doctor I could trust with our precious baby girl was when in the beginning of his presentation, in a room filled with some of the his leading peers, and parents who are too hurt, disappointed, and/or bitter to trust even God, he shared about his faith.  I have never seen anyone do that before.  I knew that took guts...or rather a very strong and authentic faith.  Again as he shared I was impressed with how knowledgeable he was, the research he had done to get to the conclusions he arrived at!  It was nothing like the picture I had painted of these doctors based on the stuff I had read about them.  Then again, at the very end of his presentation, he shared about his faith, that he was confident one day he'd see his boys and other children better from these ailments, either here or in heaven, because of his belief in Jesus!  I was shocked...and impressed that he had been that blunt!  Then he really got me.  I went up to ask him something again, since in this talk he had gone into much more detail on the biological issues and such, and I had another question about Naomi.  I remember saying to him that I couldn't remember exactly what his answer had been the night before about a particular issue with Naomi, but I had another question, and he cut me off, and rattled off exactly what I had asked and told him the night before about Naomi and what his answer had been that night.   This REALLY impressed me, because he had talked to at  least 100 parents that night, and another 20 or so that morning before I got to him, and for him to remember that specifically what I had talked to him about my little girl, I was really really impressed.  And decided at that moment that I would be taking her to see him as soon as possible.  

See, when I took the time to not just stay on the outside criticizing what was going on in the biomedical world of autism, but actually went into it for myself (and not even with an open mind!!) I learned that, surprise surprise, the media was wrong!!  These doctors, at least none of the ones I came across at the conference, aren't quacks looking to take advantage of scared, lost parents looking for a miracle!! Most of them are very passionate parents themselves, who simply decided to carve out their own path for their kids, instead of accepting the status quo.  They weren't driven into this field by the $$ they thought they could exploit out of desperate parents, but rather by the love they have for their own autistic children and the desire to find better answers for them!!  So, if you are a fellow parent who wants to unlock the mysteries of autism for your child, and you haven't been sure if you should venture into the biomedical stuff and you have been skeptical, I don't blame you.  But I would also tell you to do your research.  Perhaps attend a conference, or speak to a parent that you know has a DAN doctor.  Instead of criticizing from outside of the doors, based on information that you get from a third party, come on in and see for yourself!!  Don't allow someone else to make your opinion for you!!  I know that myself, and another of the moms I met at the conference are glad that we did!! Turns out that it isn't as 'dark' as we thought to be in the DAN world....rather, we see some new lights being turned on!

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!!