Friday, September 26, 2014

We are SO close!!

Here it is, just after the beginning of the new school year.  I was hoping Kaiden would have his new speech device already - in fact, the original plan was to work with it over the summer so I could gauge whether or not he's ready for kindergarten.  We are very close to getting the speech device - it's been a long battle with insurance, too, as they gave us incorrect information for over 6 months - even with me explaining Kaiden's story every. single. time. I called to see where things were at.  Just earlier this month, BCBS (finally) let me know that the speech device manufacturer (PRC) is an out-of-network provider, meaning they weren't going to cover the amount above deductible . . . gee, it would have been nice to know that back in December of 2013 when I first called BCBS to see what we needed to do!  So after explaining Kaiden's story yet again and again (and again!!) BCBS pushed thru a waiver to pay PRC as if they were an in-network provider.  Okay. Then working with PRC, as they typically get paid up front - PRC was able to meet us in the middle - make a $5000.00 downpayment, and then get billed later for the remainder of our deductible after BCBS pays their portion.

So, fundraising needs met, transfer to bank complete, transaction pre-approved at the bank - all my ducks are finally in a nice neat row . . . I call to make the payment . . . and receive no call back.  Oh I get it, people are busy or take sick days or whatever - but it's just another little speed bump in this VERY long journey.  Head-desk.  Hoping today's the day!

So . . . where were we at - GABA.  The low-dose took about 2 months to finally push out all the histamine from Kaiden's system.  As of July, he has been completely diaper rash-free.  I bet he's as happy as I am about that!  I did try playing around with the GABA dosage again to see if it would help a few behaviors (Kaiden thrashes wildly when mad) and it looks like 1/16th of a capsule per day is his optimum dosage.  At least for now; things always change!

Verbal speech - as with every other word he's been able to say, it's incredibly rare for him to say "Mama" or any version of it anymore. I am sad about that, but it is what it is.  He seems to keep a word for a month, maybe two before it slowly disappears.  But the good news is, his fine motor skills have FINALLY!!!!! improved enough he's begun signing back to me!  We've tried sign language since he was 6 months old, on and off.  Imitating purposeful movements has been a huge obstacle for him.  He's now up to 8 signs he can repeat.  A few of them are not entirely correct (and we're still working on correcting them) but at least I know what he's asking for now!  We have been using word/phrase cards - just the word/phrase on a piece of foam board - and if he can't sign it, he will bring me the word card.  He *can* put 3 signs together to make a short sentence by himself without prompting, but it usually takes prompting or he'll just do the main word.

Growth - thanks to the Cellular Energy + low-dose GABA, he's still growing!  From the beginning of this year - with the growth spurt from messing with his kelp & thyroid and now the Cellular Energy & GABA, he's grown 3 - 4" in height and 4 shoe sizes. It almost feels weird to buy him new clothes as he fit into the same clothes for so long.  It still feels weird to pick him up and FEEL muscle tone on his little body.

I've introduced a few simple things gleaned from Raun Kaufman's book, Autism Breakthroughs (about the SonRise program) and it's really helped - I mean REALLY helped!  Kaiden's eye contact and social interaction is so much improved.  He wants to play with me all the time!  He doesn't run off as soon as we're outside.  The only thing I can still see is that Kaiden does not do imaginative play.  He reads, he loves hanging out in the boat while we fish, playing with toys or any object that make lots of noise, and toys/things that have lights, but just does not do imaginative play.  He likes to watch videos about imaginative play, but doesn't, as far as I can tell, do it himself, so he coupled with being non-verbal, he has a hard time relating to kids his age. 

Kaiden's doing another year of preschool this year, and we're hoping he'll be ready for inclusive kindergarten next year.

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