Thursday, July 28, 2011

Joy and Pain

Lots of joyful momments over the past few weeks.

When I kept him home from camp due to illness or appointments, he asked to go to 'school'.  He loves the place now and doesn't want to miss out by being absent.  Today was the end of the July session, and parents were invited.  It was amazing to watch him participate, play independantly, and sit through circle and a sing a long!  He was so engaged and animated when Robin played guitar, he sang along! He wasn't clingy or needy.  I couldn't believe it.  This kid ran screaming from ANY vocal music up until now.  I credit the school for running an exceptional program, with a monthly calender, and a daily visual schedule to manage transitions.  Plus, being aware of how yelling and loud music can disturb kids on the spectrum.  The outdoor play time was cancelled due to rain, and he didn't protest. He just walked over to me and asked where rain comes from.  The first preschool he attended in September was one giant meltdown.  They had indoor play time due to rain and he completely lost it, and never really recovered resulting in us pulling him out of that school. 

The sensory issues (sound sensitivity, vestibular or balance, tactile defensiveness and proprioceptive seeking)  are also being resolved through biomedical treatment our Occupational Therapist noticed great improvements at his last appointment.

We had our second visit with our Naturopath, Dr. Scott Clack.  He does chelation with DMSA.  I'm looking forward to chelation.  It will bring about the next biggest 'wow' in Charlie's treatments.  Dr. Clack follows the protocol developed by Andrew Cutler for mercury poisoning.

Another extremely joyful momment occured yesterday. Dr. Clack was doing allergy testing, and he is not sensitive to gluten or goat and sheep milk.  I celebrated by going to Big Carrot and buying a loaf of multigrain bread, and some goat brie.  Today we went out for lunch at Banjara, and I let him have Roti.  I can handle a cow dairy allergy.  I don't handle cow's milk well.  The only sad news is that he has a coconut, corn and soy allergy. That means no more coconut ice cream!  I'll have to find some goat and sheep ice cream for home.  Funny co-incidence.  Sheep ice cream was the first he'd ever tried as a baby at the Dufferin Grove market. 

Joy is everytime he uses the toilet to pee or poop.  Which is about 50|% of the time now.  Things are improving, slowly, but progress is happening!

Joy is listening to him sing along to his favorite music, and flip through a book and pretend to read it.

Joy was spending some one on one time with him yesterday and noticing how much more independent and mature he long as his sister isn't around;-)

Pain has been the hour long meltdowns he's been having at the end of the day before Dan comes home. Its been traumatic and exhausting for everyone.  I have no choice but to lock Clara and I in my bedroom while he screams and rants and raves and crashes and bangs.  He seems to unravel once we get home and it is really out of control.

I'm ready to consider behavior therapy.  I don't want to sign him up for 12 hours of ABA, but I think its time to support biomedical with behavior therapy.

I spoke with a woman who does RDI (Relationship Development Intervention), and after a very long chat, where she offered no real advice that I haven't already tried, and ended up blaming his behavior on school, and suggested home schooling.  School is his anchor in the day. It provides structure and just enough stimulation to prevent boredom and acting out, but not so much stimulation that his senses are overwhelmed. School is where he is learning social skills, at the minimum he is learning to co-exist with other children without ripping their faces off.

School has to stay, and if a therapist suggests that school is the culprit, I will run away.

I met an ABA therapist at the Storefront today. She seemed very knowledgable, very skilled and expereinced and very efficient.  The only concern I have was her lack of knowledge of biomedical treatments, and her rush to judge them.  His other therapists and teachers are not so quick to dismiss my efforts in managing his diet and supplements.

Which brings me to his new supplement regime:

I've managed to reduce the juice to 1/4 and 3/4 filtered water with 1/2 dropper of stevia. We are goin g through so much less juice, he's getting much less sugar, and much more water.  This will help with his Yeast overgrowth.

I picked up the homeopathic yeast fighter, Pleo Fort by Sanum.  After a 4 hour tantrum last Friday, I got REALLY motivated to take things to the next level.  I read most of Julie Buckley's book

According to her approach, the next step after diet, is YEAST. Stop feeding it with sugar and simple carbs, and start killing it.  He wouldn't take grapefruit seed extract or oregano oil.  I loaded up on yeast stuff at Supplements Plus. Olive Leaf, Pepperment oil, Pleo Fort, activiated charcoal, aloe vera juice.

After a few days of Pleo Fort, his oral thrush went away.  He didn't have major meltdowns or complain of a headache until today. I noticed a spot of yeast on his tongue today.  I'm going to be strict with the yeast treatment.  no sugar, minimal refined carbs, lots of probiotics and some olive leaf and aloe vera juice. I wish I could give him prescription antifungals, nystatin and diflucan.

I went to his Pediatricians last week to ask for an audiologist and optometrist referral. I also asked for a requisition for the blood tests that Dr. Clack suggested.  I got a bizare reaction.  He lectured me, some highlights from that horrible appointment include:

"I'm not going to waste taxpayers money ordering these blood tests"  "The only testing he needs is genetic testing".  He spewed his limited nutrition knowledge.  In the end he had no new usefull advice to offer.  He suggested ABA through Surrey Place again...which Charlie does not qualify for as his Autism is not severe enough.  He suggested a Developmental Pediatrician, to do genetic testing. However, he did not know where to find one. He suggested a chewable multivitamin with iron.  Kids on the spectrum need LESS metals like iron, and do not need a multivitamin that is full of sugar, food colour and flavours.  Plus Charlie is sensitive to B vitamins so multis are not suitable.

Western Medicine is useless when treating Autism. 

I won't be going back to Dr. Goldback for Clara's 1 year check up.  I'll wait till she is 2 to vaccinate with MMR.  I CAN NOT go through this again with another child.

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