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Friday, November 6, 2015

Jumping

It all started a month ago with some brochures.  I was at a conference talking to a vendor about their "amazing, groundbreaking treatment" for kids with neurological disabilities (think ADHD, autism, sensory processing disorder, learning disabilities, OCD).  I stopped to chat with them because our sweet second son has sensory processing disorder, but I already knew what I would hear.  It would be the same thing I always heard.  "There is no cure."  "Here is another therapy that you can do for the next 13 years of your child's life to help with some of the symptoms."  But that's not what these ladies told me.  They said that this was a new treatment designed to target weaknesses in the brain.  It wasn't a cure-all, but there had been amazing results not behavioral band-aids.  Kids on the autism spectrum that no longer exhibited autism before. Say what??

It sounded too good to be true.  And I'm a skeptic.  And a judger.  I put the pamphlets in my bag and kept walking, but I couldn't get their comments out of my head.  I kept thinking about our son, Ben, and how much he struggles with everyday interactions and tasks.  The pamphlet came out at dinner as I talked to a friend whose son struggles with ADHD.  Was this a hoax or for real? Was this just one more way for parents with special needs kids to bleed money and time?
It feels like we've been through everything.  Allergy testing, elimination diets, occupational therapy, physical therapy, speech therapy, surgeries for Ben's overactive immune system, developmental pediatricians.  Everything.  And yet there were so many quirks with Ben that were still going unaddressed, but I saw them.  My husband saw them.  And we were clueless to know what to do about them.  Those well-wishing people who continued to tell me that everyone learns to potty train by kindergarten just made me want to scream.  And then there was the pickle when the school system told us that Ben was too academically advanced for special needs preschool, but no private preschool in the area would accept him unless he was toilet trained.  And then there's the relational strain.  People we were close to have backed away because some of Ben's behaviors were not in-line with his age and are... well, socially inappropriate.  We know.  It's hard to tolerate.  Some days, it seems like he's almost the same as his peers.  Other days, the gap is so glaring that I don't know how we'll ever catch up.  And then kindergarten looms in the distance...

Fast forward two weeks as I was sitting at home listening to an online conference, where, lo and behold, one of the speakers was none other than the doctor who designed this new treatment for kids with behavioral diagnoses.  He had also brought a mom to present with him who had two sons complete his program with radical results.  So life-changing was this program in their own family that this family started up THREE of these treatment centers to serve other families in their community.  

As I listened to the seminar on my bed, I started crying.  The symptoms and struggles they were describing were ours.  If the research was correct and the results were for real, this could change my child's life forever.  These Brain Balance Centers were based on the principle that the two hemispheres of the brain don't always develop in sync.  When one side of the brain develops much more quickly, it interferes with overall neurological function and leads to the issues that our generation's children struggle with in epic numbers.  If we can stimulate the areas of the weaker side of the brain so they can catch up to the stronger hemisphere, the brain is able to function in sync.  Problems resolved by this treatment include autism (I know... it sounds crazy.), sensory issues, food sensitivities, impulsive behaviors, immune deficiencies, and so much more.  

I ran down the stairs and told my husband that he had. to. listen to this.  I needed to know if I was being crazy to even consider this.  It felt crazy.  It felt like a desperate mom just grasping for help in illogical ways.  Immediately, I bought Dr. Robert Melillo's book Disconnected Kids, and read it to see if the research and program really did seem as logical and promising as they seemed.  After reading through the initial pages on the method and research, I was at least convinced enough to call the center closest to me and find out about their initial evaluation.  

Bless that man's heart.  I asked a thousand questions, and he answered them all.  By the end of the conversation, we had set up a day for Ben to be evaluated for three hours the following week.  My husband and I would return to the center two days later to discuss the findings.  The cost for this evaluation: $150. 
Worst case scenario: we would waste money and time driving to Fort Wayne for a couple days.  
Best case scenario: we would start a journey toward helping our child take in and adapt to his world.

Ben's evaluation was this Wednesday.  As I drove to the evaluation, I talked to a friend on the phone and begged her to pray for discernment.  Something.  Even if it was just a vibe.  I was shaking as we finished our conversation.  I didn't even know what I was looking for.

Upon arrival, I was impressed by the center and the staff that we met.  They definitely had worked with challenging kids before and were committing to staying positive and proactive.  Ben was eased into his activities for the morning, and I was given a tablet with literally hundreds of behaviors to score on a scale of 1 to 10 (1 being not an issue for Ben, 10 being a severe issue).  My paperwork and behavior scoring took a little less than an hour.  Very thorough. Ben cooperated for a while in the evaluation and then decided to be ornery, but the staff didn't lose their cool.  He completed the testing in about two hours, and we were on our way home.  I had a very tired boy and no clear direction on what Friday would hold, but I just kept feeling like it was worth taking things one step further.

Today.  Oh today.  I've been a wreck.  Waiting for the test results.  Trying to think of all my questions.  Processing whether or not this whole crazy program could possibly be legitimate.  But after sitting down with the director of the center, my husband and I decided that our family would take another step forward and jump into the Brain Balance Center's 6-month program.  We start on Monday so I have no mind-blowing results to give you.  The only thing I possess is hope.  I have this strange, unwavering confidence that this new therapy will be worth driving an hour away three days a week so that my son can participate in this program.  

My heart is full of concerns.  How will this huge time commitment affect my other children?  What if we get to the end of the program and nothing has changed?  What if Ben fights us every stinking time that we go?  What if...???  But then a stronger voice in my head says, "What if this is the key to understanding your puzzling child?  What if this six months is the beginning of a healthier life for my child?  What if we never jumped and never knew how much better Ben could take in and participate in his world?"  

What if this day is the beginning of a whole new way of living for our son?

If you are thinking that we've been duped and are fools, I understand.  I'd probably think the same thing if I hadn't read the research and lived with Ben.  In so many ways, I am confidant that God knew what He was doing when He gave us Ben.  Benjamin has enabled us to look at other children and their parents and to know that we just don't know.  We don't know what it's like to live and teach that child.  We don't know what their personality is.  What their struggles are.  What their strengths are.  What their quirks are.  And we for sure don't know the answers to everyone's daily problems (aside from a relationship with Jesus Christ).  Ben has allowed us to have grace for others that we would never have possessed without him in our lives.  And for that, I am forever grateful.  But if we can make the everyday interactions of Ben's life easier, even lessen the affects of SPD (sensory processing disorder) in his days, it will be worth it.  Every minute spent, every mile traveled, every dollar paid.  

I know this is controversial, but regardless of agreeing with our choice, would you pray for us?  Would you pray for our family as we juggle this new schedule and the changes that this program requires?  Would you pray for Ben to become all that God created him to be?  And would you pray for our family as we share our experience with a world that is watching?  We want to be salt and light  whether that's around our table or sitting in a waiting room in Ft. Wayne.  And know that we appreciate you.  We would never even attempt to do all that we do without a loving community cheering, praying, carpooling, helping with childcare, and reminding us that if we're crazy then we are their kind of crazy.  We are jumping, holding onto Jesus with one hand and Ben with the other.  And only time will tell what's at the bottom.

2 comments:

  1. I'm definitely going to be praying for you and following this. Gwen has SPD, an anxiety disorder, an overactive immune system (asthma, allergies, etc), and GI dysfunction. We had her evaluated for autism on Thursday and the evaluator said that she is just off of the spectrum but it sounds like she was likely just on the spectrum before we began her GFCF diet. I'm going to read the book you mentioned above. We are hopeful for answers as well.

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    1. Sara, I will update as often as I can and be as honest as I can about results both positive and negative. It sounds like this program can be a benefit for so many struggling children. As a scientist, I would be interested in your take on Dr. Melillo's work. I know much of his research is not a controlled scientific study but the results seem to demonstrate significant progress for each child.

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