Friday, June 1, 2012


Today, we helped B's Nana with a garage sale.  Some giant hurdles were leaped with this sale.  The first: B was able to let go of some toys.  This is huge for him.  He has emotional attachments to almost everything.  He asks me take pictures of his jammies when he outgrows them.  He saves torn art projects and broken toys.  The fact that he let people walk off with his toys was a big milestone.  I was very proud.

The second hurdle: he greeted the customers.  He walked over them and explained how toys worked.  He didn't hide inside or behind me.  He drew pictures for them.  He reciprocated conversation.  He didn't stand in the front yard shouting, "Who wants to buy a picture?"  like his sister.  :)  He was polite, and helpful, and very brave.  Social situations are not usually his cup of tea.

Two women stopped by the sale with 3 children.  One little boy of about 3 or 4 kept darting from his mom, toward a certain table.  His mom took an item out of his hand, he picked it up.  She said "no" and took it from his hands again.  He began to cry loudly and picked it up.  I empathized with this mom, remembering a younger B.  I remembered when we tiptoed around every situation because it would set off a meltdown.  We were constantly trying  to be aware of the triggers.  When he would have a meltdown, nothing would calm him.  We would leave wherever we were and go to the car, or home. or somewhere B could be alone with us.  A place without a lot of people around.  It didn't hit me until those mothers and their children left that that little boy had autism.  I mentioned something to Erik and he said, "Yes, she had a 'walk for autism' shirt on."  I looked at B, sitting quietly, printing his name on a portrait of himself sitting in a race car.  I realized then and there how tall that hurdle was....and he cleared it.  From numerous meltdowns...even hourly meltdowns, to very few.  Maybe one, if that, a day.  They are shorter and milder than our days of hour long screeching over something that seemed so minute to us, but was monumental to him.  He watched that little boy, not with a puzzled look, but with a look of understanding?  wonder?  interest?   When the little boy left, I explained to B that he had autism and it made it hard for him to calm down.  B replied, "Oh.  I get it.  Mommy?  When the lights hurt my that autism, too?"  He understands more than I ever give him credit for.

People have asked me if B has autism and I never know how to answer that question.  His official diagnosis is PANDAS.  At the conference last week, this link was cleared up for me...sort of.  Dr. Rosario Tifeletti explained PANDAS as following a pattern:  Neurotypical----->PANDAS---->PDD-NOS---->Autism.  Had we taken B to a doc who was not familiar with PANDAS, I believe he would have been diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified).  He certainly fit the mold at that point in time (before biomed).  PDD-NOS is on the autism spectrum.   We also learned that it is important to decrease the brain inflammation.....or B may regress back to PDD-NOS or further on autism spectrum.  Erik learned at another lecture that the key to reducing the inflammation is healing the gut.  It all comes back to increased intestinal permeability or "leaky gut" and it's connection to brain function and overall inflammation in the body.  I probably sound like I'm talking nonsense right now.  Goodness knows I didn't understand a lick of it until I started reading the medical journals and studies.  So, we have to heal the gut.  We have to.

These past few months, B's tics have been more severe and continuous.  His speech has been affected...which I mentioned in another post.  While he used to be quick with an answer and very articulate, it now takes him a long time to say what he wants to say.  He's still articulate, it just takes him longer and he drags out his words.  Pair these things with the bladder issues (the number 3 reported symptom of PANDAS by the way) and we've got our work cut out for us.  Heal the intestinal lining and reduce inflammation.  That's what we have to do.  We are going to embark on a new protocol for this (in conjunction with biomed...but fewer supplements).   I'm a little nervous.  I don't want to set him back, but I know we need to do something different to move us forward.  Please pray wisdom for us.  That Erik and I follow God's leading...that we hear Him loud and clear.  I've known we've needed to do something different for a while now, but I've been hesitant to change what we are doing even if it's just momentarily.  I've been waiting for the okay, but I think this time God is giving it to Erik and I need to trust him.  B's jumped some tall, tall hurdles....this is will be his biggest one yet.

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