Agape

After being MIA for quite some time and not even sure if I wanted to continue the blog I decided to post.  Things here have been overwhelming in many ways this last month or so, perhaps I will share more details on a later post.  But as I sat at my computer this morning, trying to get some work done and drinking my coffee many random thoughts have crept in and out of my mind as they tend to do when the house is quiet and I am left alone to even be able to hear myself think!!  And Naomi, her autism, and different ways it affects us always creeps in.  But this morning the thoughts led me down a different path than usual.  I tend to think often of what can she really comprehend, what facts and details of every day life does she really have a grasp on?!?  Yes, her vocabulary is expanding, but a lot of it is mainly her being 'trained' to respond to a certain prompt with a specific response, more so than her really giving us her honest 'answer.'  For example, in therapy they were teaching her to say her name, so that when you asked her what is her name she'd say 'nay-OH-me'...and I'd LOVE LOVE LOVE to hear her answer.  I'd ask her her name at least 20 times a day...which made me wonder if she thought I was crazy!  I bet in her head she'd say to herself, 'What is wrong with this woman.  She calls my name 50 times a day to get me to do things and then asks me my name just as often...does she forget it that quickly?!?' Once she had mastered that they started to teach her to say her last name, so she learned to reply 'Cherry', but now if you ask her a question that has the word 'name' in it, whether you'd ask her for her first name, or what is her last name, or even if you'd say what is the doggy's name, her answer is now always Cherry.  If she sees a picture of herself and you ask 'Who is this?' she still replies Naomi, but because the current prompt at therapy is her last name as soon as she hears that word in your question, her reply is 'Cherry' no matter what you are really asking.
      And one of the things I think of most often of whether or not she can understand is how much we love her, if she even knows what LOVE is.  I tell her I love her all the time, and some times she will reply with an I love you back, but I wonder if she even really knows what she is saying, what she is expressing, more importantly what it means that I love her!  Or is it the same as the name example above, where she is just repeating what you are saying because it's what she thinks she should do.  But as I sat here this morning and started to think about 'Does this little girl really understand that she means the world to us??  Does she really know what a gift she is, how precious she is, how adored she is??' God stirred my heart and thoughts down a different way.  I started to think about what she is teaching us.  As hard as things are at times, Naomi is giving us a wonderful gift that not many, especially here in our Western society that tells us to do what makes us happy and is all about instant gratification, get to experience.  She is teaching us to truly love, the hard kind of love, the one in the Bible referred to as 'AGAPE' love, the kind that God gives to us, and Jesus was willing to live out as he hung on the cross for our sakes!!  In the Greek there are 4 different ways to express love, which really is better because how can you 'love' your husband and children and 'love' your favorite pair of jeans and want for that four letter word to mean the same in both contexts?!?  So the greek have Éros, to mean that erotic passionate love, Philia which is used to refer to brotherly love, what you might use to refer to your friends, there is Storge, which is used mostly to describe an affectionate love, and there is the kind that we all long for  Agápe and this is the unconditional, ever fulfilling,  1 Corinthians 13 kind of love.   

And all 5 of us here at the Cherry household are having our hearts tilled to be able to give this kind of love.  We all in different ways, even the littlest Cherry, sacrifice, give, and love Naomi without really getting much in return.  For me especially.  It is so overwhelming at times how hard things can be, the things we have to overcome and deal with each day, I can't tell you how many times the thought creeps in my head, 'God, I don't have the strength to deal with this right now.  I don't have the energy to do overcorrection 5-10 times, or spend 30 min trying to just get my child to sit.'  I don't even know how many times a week I am fighting back tears whether out of frustration, my heart breaking for our little princess, or out of feeling hopeless and defeated. I can't even explain the toll that it takes on my emotions and heart to go from a top of the mountain experience because of even the smallest accomplishment I may see in Naomi, to the down in the muck, literally, cleaning up poop at 11:30pm when all I wanted to do was crawl in bed!  Yet, as I think about the articles and stories of parents that did the 'unthinkable' and ended the life of their autistic child, and/or their own because it was more than they could handle, I can't even imagine that!!  It is extremely hard and some days I don't know how I will make it the next hour, but then I see her smile, or hear her little voice and I am reminded of how it is all worth it, poop and all!!  I am reminded that something beautiful is in the midst of all this pressure, much like how a diamond is created.  And God shows me that He is giving me a real life example and reminder of how He loves me.  I am sure that there are lessons God feels I should have learned 10 years ago, there are areas where I am stubborn  to the point of making Him wish to flood this Earth like He did in Noah's time, things that He tries to show me I need to rid my heart of that I am still blind to.  I know that there are concepts and Bible verses that I can spew out when prompted that makes God say, yes great, you can say that, but why can't you grasp what it REALLY means!!  Yet, though I seem to have nothing but trouble to offer Him, He sees beyond that.  He looks at all that I lack, all that I don't understand, all of my brokenness, and shows me that He loves me in spite of all that and gives me His strength to go on!  


    And this morning He gave me an early Mother's Day gift.  As I sat here contemplating on what does Naomi understand in regards to my love for her, what will she ever understand God gave me the gift of the love of my daughter.  He showed me that though she may not grasp the concept of love in the same way that I can, or that she may not be able to express her love for me in the same way my typical 6 yr old can, she still does.  She does it in the way that she has always come to me for protection, for cuddles, for help.  Even while she was deep in her 'own little world' she'd reach out at times and bring me in with her.  And today God showed me that in spite of us at times waking her up from giving her a shot at times, in spite of me spraying her with cold water that she doesn't like to reprimand her, in spite of me literally sitting on her, not allowing her to breath through her nose, and forcing her to take medicine she can't stand, in spite of having to drop her off for 6 hours a day to a place she sometimes doesn't want to go to, her view of me hasn't changed.  She still runs into my arms and holds me tight.  As soon as she gets home the first she things she does is look for me around the house.  When she is weary of a situation it is my hand that she won't let go of.  So though I worry at times and don't know if she can understand that the medicine, the shots, the hours away from home at therapy are all for her own good and because we love her, God showed me today that somehow, even through the mysterious walls that is Autism, love gets translated to her heart just right!!

Laura Story - Blessings

It has been a rough couple of weeks around here!! I haven't had the time to come on and post, nor even the heart!! But wanted to share this song...it has been a gift to me in helping to put my thoughts back in perspective!! Hope it encourages your heart as well!!

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!!

One horse length, one mile, one day at a time!!

And let us run with perseverance the race marked out for us (Hebrews 12:1b)

So tonight was family movie night, and we watched Secretariat.  And let me tell you, it was such a great movie!!  So inspiring and uplifting!!  Since it is based on a true story, I will share some about it and not feel as though I am spoiling it for any of you that have not yet seen it.

It is the story of a housewife that inherits her father's slowly failing horse breeding farm.  There are two sires about to give birth and her instinct leads her to believe that a particular one had the DNA to be special.  The stud for the horse about to be born is one of the fastest, although he can't last very long.  But the history of the mother shows that they could be the perfect combination! Sadly, all the experts would only focus on his father's limitation, and project that on to him.  Yet, from the moment Big Red is born Peggy and those closest to the horse knew there was something different about him. And going against all odds, against her brother, her husband, sacrificing her time, and risking more than she even has, Peggy believes that this horse can do amazing things.  She overcomes many odds and becomes the owner of a horse that wins a record breaking Triple Crown, something that hadn't been done in 25 years, and since him, no horse has come close to even touch his record.  Secretariat still is considered the greatest race horse that ever lived.  It was a hard road.  With many obstacles to overcome.  They had to believe in something they had never seen Big Red do, something they saw beyond what was visible.  They had to overcome their own doubts, their nay sayers, and a loss that could've crushed their hope.  But in the end it was all worth it!!

Now faith is confidence in what we hope for and assurance about what we do not see. (Hebrews 11:1)

As I watched this movie I was reminded of a couple of things.  The last couple of weeks have been hard ones, with everyone sick, Naomi went from having two of the best weeks we've ever experienced with her in Jan, to having a REALLY rough couple of weeks up until this one.  All in all, I have not been at a  good place.  One verse I always try to remind myself of at times like this is James 1:2-4 Consider it pure joy, my brothers and sisters,^[a] whenever you face trials of many kinds, ³because you know that the testing of your faith produces perseverance. ⁴ Let perseverance finish its work so that you may be mature and complete, not lacking anything.But the movie brought back some good lessons I have recently been taught.  

On January 8th myself and 3 crazy and amazing friends of mine ran our first half marathon!!  Something that if you had asked me last year if I would ever do in my life, I'd have peed my pants laughing at the fact that you'd even have such a thought!!  I remember in high school, doing the mile fitness test in PE, and never getting better than 15 min.  I was always one of the last ones in...I couldn't even walk the darn thing right!!  And to think that after 4 kids and a C-section that I would venture to go on and do 13.1...yea, not happening!!  Yet, I was able to!!  I was very amazed at how when we train for something, when we set our minds to it, when we believe in it, we can indeed conquer it.  It has to be something you truly believe in, you truly are willing to fight for, something you know is bigger than just yourself.  My whole initial motivation for doing the race in the first place was Naomi.  Learning of the many obstacles she faces each day, the many hills she'll have to climb and wanting to give myself a glimpse of what she must feel.  To be overwhelmed with the thought that you are asking yourself to do something you have never done before!!  But with each mile I added to my training, it was amazing what would happen.  Yes there was pain, sweat, and some BioFreeze involved, but there was also a conquest, a victory!  Knowing that if I could do that, than I can do more!  Through out my training, and on race day, with my worship music on my iPod, God kept reminding that all I had to do was concentrate on the next step.  On the next stride, and cross them off one mile at a time.  In my life in generally I tend to try and be ahead of the curve, anticipate what will happen and not get caught by surprise.  Problem is you can't be a step ahead of a God that always has been, is, and will always be!  You can only take the next step.   

So watching Secretariat reminded me of why we are running this race for Naomi.  Why we are investing into certain things, that aren't a given, that may not have concrete proof.  Why we are willing to take a risk, willing to give her shots every other day, try new creams and supplements, and not turn around.  Yes, there are many that say it won't work, it's a shot in the dark, there is nothing we can do. But when I look at her, when I see into her eyes, when she shows us her heart, I know there is more!!  Not all of what we are trying may work, it may not ever make her 'typical'.  But I know that she will still be all that she was created to be!!  And we will be able to look her in the eyes and say to her (which I know she understands) "we fought the good fight, we believed in you, we gave it out all, and it was worth it!!"  The amazing thing about Secretariat, that is just as amazing about Naomi, and any one of us that believes that God has sent Jesus Christ to redeem us, is that we do NOT have to be defined by the limitations of our DNA.  We do not have to quiet that which we know to be true about ourselves in our hearts, because of what we hear from those around us!!  No, we are not limited by our earthly parents and their faults, because God himself becomes our Father, and sees within us all that others can't, and sometimes neither do we.

Secretariat reminded me that I don't have to have all the answers today, and I may even have to deal with some losses before the big win!  All I have to do is keep those blinder's around my eyes, so I am focused on the track that God has layed before me.  And run it knowing that He has equipped me to do it, that He believes I can do it, and that He has made a way so I can do it!!  And then I just take it one horse length at a time, one mile at a time, one day (good or bad) at a time!!

Happy Love Day!!

So this past Monday was Valentine's day!!  We weren't able to do much, I was hacking up a storm and sitting at the Dr's office, only to find out that I had walking pneumonia, or the beginning of it, however you'd prefer to describe it.  So, it wasn't our most memorable of celebrations together!!  But, on the bright side, my valentine was by my side the whole time, taking care of me, wanting to help me feel better!!

Today in the car, I heard this song, (make sure to pause the blog music first) it wasn't my first time hearing, but the first in a while.  And it was such a great reminder from God about what today is about!!  Not Valentine's day, but today, every day that we are given with our spouses that we have been blessed with.  We are called to love every day, not just on birthdays, anniversaries and other special occasions.  And as the song reminded me, that is exactly what we were doing on Valentine's day.  It wasn't the Hallmark, commercialized version we have all been programmed by movies, romance novels, and other media to think it should be.  But it was the real kind of love.  The kind that God has offered to us, and in turn asked us to give away.  Marriage was established by God to be the closest resemblance of His love for us, and yet, in this day and age where the divorce rate is higher than 50% it certainly doesn't seem like it!!

This past year has been an adventurous one to say the least for us.  Between different job situations, Naomi's diagnosis, and all the other little stressors that every day life with 4 kids 6 and under can bring you,it isn't always easy, or anything like the movies!!  But as we near 8 yrs of being together, I can honestly say that our love is REAL!!  That I am blessed with a man that knows me inside and out, has seen me at my worst several times, knows all of my faults, and yet chooses to kiss me, hold my hand, and laugh with me!  It hasn't been anything like we had pictured at first, but it has been exactly what we needed.  Each trial has matured us, grown us as individuals and as a couple, and has helped each of us be more certain and feel safe by what we share together!!  

 I am thankful that we weren't in control all these years.  That God knew the good and the bad that we needed to get us to where we are today.  That He has been along with us each step of the way using our imperfections, our misgivings, our impatience and turning it into something beautiful!!

No, our love isn't like what we see in the movies, but it is perfectly what I needed!!  We are still a work in progress, still moving along on the scale to hopefully reflect Christ more and more!!  

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Love how these two are cuddling!! And not sure if the picture highlights this, but Jojo is rubbing Eli's head. Soooo cute!! One of the things we really try to be conscientious of in raising our brood is that they don't ever have to feel like they have to compete with one another, but rather see each other as a blessing in their lives. We intentionally make sure they know we don't have a favorite and we never play favorites. We don't compare them to one another on any terms. Just because one may be really good at something it isn't fair to expect the others to be as well! God made them each unique with their own strengths and weaknesses, ad we try and highlight that to them as much as possible! I have seen first hand the damages that showing favoritism and allowing sibling rivalry to stew can cause. I am glad that even as young as they are they are great friends and truly enjoy one another!! :)

WOW!! What a year!

It is the morning of Dec 1st and I have been up since 4am!  It is also, more importantly, Naomi's 4th birthday today!!  Plenty of reason to be excited and celebrate, but not quite so at 4am.  I am not sure if it is the brownie sundae I had last night that is causing this cramping in my stomach, or all the different thoughts and emotions this day brings this year!  6 months and one day ago we were told Naomi is on the Autism Spectrum.  No major changes really took place from our day to day life routine or even for Naomi herself.  And yet, we live in an entire different 'world' since then!!  One with a new language, new mannerisms, new way of living, and feels so lonely!!  I think that has been the hardest part, the loneliness I feel at times.  Like we are on a dessert a island, and the only ones here are us...and Amanda.  She is Naomi's tutor/therapist, and has become one of my favorite people!!  Actually, I think I'd be easier if we were on a desert island, at least that way we wouldn't see everyone around us just going on with life, as though everything was normal and the same in ours!

      I guess if you read the paragraph above you'd think I wasn't in the mood for much celebrating.  But I am!!  I have been thinking and planning for today for a few weeks now!  But for entirely different reasons than with any other birthday for any of my four children.  Anyone that knows us, knows that we love to through a party, to celebrate our kids as much as possible.  But the last birthday we had for Naomi consisted of elaborate decorations that she didn't even notice, a cake that she didn't want to eat, and presents she had no desire to open.  Not to mention the 30+ kids I had running around my house, while she sat in the middle of the living room watching her favorite TV show, oblivious to everyone of them.  So we decided after that one to put parties on hold for a while...little did we know at the time that it might've been her last big party.  Last year we went to Chuck E. Cheese with just a couple of other friends.  She had a pretty good time there, but this year she is on a Gluten Free/Casein Free diet and can't have pizza...or cheese!  So this year what I have been looking forward to doing most for her birthday is speaking at an Autism Awareness event tonight.  Rachel, one of the teens (now young lady) that I was blessed to serve in our Youth Group, thought of us when the opportunity for a service project came up for a class of hers.  She and the professor randomly picked today as the day of the event, not knowing it was Naomi's birthday.  I choose to believe it is the hand of God reminding me that He hasn't forgotten about us, our our new found battles!

      One of the things this year brings that I hadn't counted on is anxiety, concern, and heartbreak.  I love our little girl more than words can express!!  I am so thankful that she is mostly healthy, that she is here with us.  But I am not sure that knowing she doesn't have any life threatening issues breaks my heart any less for her!  At a recent Autism conference I was at a mom of 3 children shared some of her story.  None of her kids are autistic, but they have each had major health issues that have caused a lot of the same impairments.  She even had one of her children pass away.  She shared that she wasn't quite sure what broke her heart more, burying her young child, or dying and knowing that she will leave behind two children that can't take care of themselves.  Seeing her two children (and herself) get older, knowing that one day she won't be here to take care of them any longer, they can't take care of themselves, and worrying about who will.  Perhaps since this marks another year of Naomi's life, this is fresh on my mind today.  I also recently read a book by a mom of three girls on the spectrum.  In one of the chapters she talked about shopping for Elmo dolls and Sesame Street toys for her daughter's birthday coming up... her daughter is turning 16!!  So that too lingers on my mind.  Will our Naomi be one of the 'miracle' stories of children who mostly/completely recover and go on to lead mostly typical lives?!?!  Or will I still be shopping for Diego dolls and Fur Real pets 10 years from now??

       Truth is, I don't know!  No one does, no doctor can tell us what she'll be like, no therapist can give us a specific outcome to expect.  We don't have a detailed treatment plan with a date in sight that we can circle and say, 'As long as we can make it to here, we'll be ok!'  No, we can't hold our breath, brace ourselves for the tough times now, and say that this is only for this moment.  Because the reality is this 'moment' may never pass!!

      Mostly I am thankful for our God, our Saviour!  I am thankful that even at 4 am He is there for me.  As I finally got out of bed, tired of laying there willing myself to sleep, He sent me this message : Don't Over Think It.  This is an email I receive each day on my phone.  I grabbed my phone and the laptop at the same time and decided to read the email before opening up the laptop.  What a great reminder, not only to not lay awake in my bed at 4am "overthinking" but that my God really is just that...my God.  He looks down at an earth filled with billions of people and sees me!  I am thankful that He does know what Naomi's future looks like.  He does  know how she will be taken care of long after her daddy and I are gone.  He has a day circled on His calendar when all of this will end.  Whether here on earth or in heaven with Him!  How perfect that today marks the first day of the month when we celebrate Christ's birthday as well!!  As we make plans for Christmas, make the lists, deal with the crowds in stores, and see our bank accounts dwindle away; let's not forget about The Gift that came to this Earth to fulfill every need on our list, to meet with each one of us personally, to fill our lives with more than we could ever have imagined!  My pain, heartache, and disappoint is very real...and at times all I can see!  But so is my God, and at times when I can't see Him or don't feel Him, He still there, never faltering in His care for us, never forsaking us, never forgetting about us. 

    I can celebrate our little girl today because regardless of how the world labels her, she is still our miracle!!  Regardless of the battles and hard times, we'll fight them all on her behalf.  Besides, who'd want a 'typical' life anyways!?!

    Happy Birthday Nay-nay!!  We love you more than you will ever know!!

    Now off to make some Gluten Free-Dairy Free cupcakes!!  And pray!!

     If you'd like to celebrate her with us I had a great opportunity for you!!  In honor of our precious girl, I and three other friends are running in a half marathon in January!  If you'd be willing to make a donation in honor of Naomi we'd so appreciate it!!  Marathon Fund

Mini-Extreme Home Makeover!!

I am really trying to write on here more frequently, but so far it has still been pretty hectic around here! Naomi didn't have any appointments scheduled for the week of August 8th, and then her treatment start date was pushed back to the 23rd, which was a great gift to us! We haven't really had a normal summer, and since it lasts for such a short time here in Northeast Ohio, we hadn't enjoyed it as much as I would've liked. So for the last couple of weeks we crammed 2 months worth of fun into 10 days....along with 9 kids!

The perfect start to this two week 'stay-cation' was a weekend away with my hubby. Three great friends of ours decided to not only organize people to come in and help us get the house ready to go on the market, but also send Jerod and I away for the a couple of days!!

It came at a very much needed time. We had been on survival mode since the beginning of June, and it had definitely taken its toll on our relationship. So it was great to be able to get away just the two of us, being able to focus on just us. On our friendship and on each other just as husband and wife....and not worry about being mom, dad, doctor, advocate, etc!!

We took a weekend trip to Columbus, but didn't end up leaving our hotel very much. We had considered going to Cedar Point (since we both love roller coasters) but after the hectic couple of months we had we decided we wanted to just veg, and we did just that. That Monday Jerod would be starting his new job, and would have VERY long days working, so we figured we needed to give ourselves a breather. We enjoyed watching 5 diff movies, sleeping in, working out together, and having some great food that we didn't have to cook, and even better, I didn't have any dishes to do!! :)

While we were gone, our friends worked hard on our house. I can't even explain what it did to my heart as I saw them come in Friday night and set up. They had a ton of food, and all of these supplies, and what really made me feel the most loved by them, was when they pulled out these charts they had made to organize everyone that would be helping. Sounds silly, but to me it truly showed all of the thought, care and concern they had put in. For several reasons from my childhood, I struggle with some different hard issues. Many of which have to do with relationships with other people. I easily feel like an outsider, like I am standing on the sidelines and I am not important. I feel as though I have to work twice as hard to 'earn' people's friendships. And that somehow, I am not quite worth the effort back. This was a message that I heard many times over growing up from people that should have been very significant in my life, and its just so hard to undo the damage. For over 6 years now it is something I constantly bring to God, and have made great progress on! But still, many times, including recently, I have felt this way because different disappointments and let downs with others. So to see all of this thought and effort on our behalf, and from people who up to this point I hadn't ever really done anything for. So I knew it wasn't because they felt they owed it to me, it wasn't because I had earned it, but because they truly wanted to do this. It was an AWESOME gift that they gave me!! I am soooo thankful to them for their time and love in a time when I thought it seemed we were carrying all of this weight on our own. What a blessing to find out we weren't!!

So Jen, Bry, and Judy, along with a ton of people that we have had the privilege to share life with these last 5 years took over our home for the weekend! We also had a ton of our Youth Group teens show up to help as well! It was a different experience for both Jerod and I. They painted, mulched, and organized! Most importantly they amazingly were able to clean up all of Naomi's 'artwork' from our walls! We came back to happy kids who had a great time with the friends they had spent the weekend with, and a clean home, just about ready to go on the market. The thought of all we had to do to get this house ready to show was overwhelming me so very much that entire month. As busy as we were I didn't see how it was possible to add fixing up the house as well. And I thank God for all of the people that showed up to help and did it for us! It was so much more than saving us time and work, it refreshed our spirits and revived our hearts. I truly can't express how loved and cared for I felt, probably the most by anyone besides my hubby and kiddos.

For all of you that were a part of that weekend, and we don't even know all who showed up, THANK YOU!! You all were amazing, and were truly the body of Christ showing us love!! Thank you!!!