3 . 27 .

DECEMBER. 2008 >

Luke's been saying the word "more" and "no" a lot which is great. He's babbling a lot more, copying Joel and has actually stopped screeching (thank goodness). Reports from preschool say they can't believe how far he's come since September. There's both a confidence and a charisma about him. His assistant, Ms. M. is trying to step back from Luke more so he can become more independent, but quite often two or three little "mothers" swoop in to help, which Luke likes to take advantage of. If you're going to do it for Luke, he'll let you :).

Dave played "The Throw Game" (throw Luke onto the couch) and Luke had to say "more" and "go". After a few turns he said "more" with no prompting, and signed "go" easily; but sometimes he got so excited he'd sign three different signs before he got the right one :). On the last turn he actually said "go" verbally which is a first. Apparently he's been saying something that resembles "thank you" appropriately both at preschool and with the BIs (not with his parents, of course - haha).

Luke's dad just told me that after preschool this morning he was talking to the preschool coordinator for a while, walking to the car. At one point Luke tried to get his dad's attention because he was looking up and saw an airplane and was watching it in awe. Dave could not believe it! We've tried to point out airplanes to Luke before, but he's been oblivious; but now that he's leaning his head back with confidence, it seems like his whole world has expanded. Quite exciting.

His appetite seems to be back, and his stomach problems seem to have calmed down somewhat. He's had an eczema flare-up in his "elbow-pits" which usually means an allergy food infraction; but we couldn't think of what could be causing this and a few other minor "regressive" traits (hands flapping slightly, grinding teeth). According to his BIs his programs show no regression as he's doing very well in them. From our closed door office we can hear them having a riot in the living room. I think they like their jobs. We're going to have Luke go to preschool only 3 days a week in January, and replace the two mornings with more one-on-one ABA therapy. It will be interesting to bring yet another person into our home and lives.

December 27
Must be a busy month as there's only two entries...

Luke finished preschool on December 12 and he'll be going back in January only 3 days a week (MWF) instead of 5. The Tuesday and Thursday mornings will be additional one-on-one ABA therapy, so our BCs are busy hiring someone new.

On December 9 we went to see Dr. Wagstaff in Winfield and he tested Luke again. He still has some issues internally with dopamine and norinepinephrine. We discussed Luke's allergies to cats and or dogs, so they tested him for this as well and he is definitely allergic to both dogs and skin molds (?). So they are treating this allergy. We also discussed how in autopsies of children with autism the measles virus was discovered in the gut area as they could not properly cope with the vaccination. I asked Dr. W. about this, and he said "Let's test Luke and see". He had small vials of a few different strains of the measles virus. He said Luke does not have any live viruses existing in his gut, BUT he definitely has damage caused by the measles vaccination. So he'll be treated for this via homeopathic drops... interesting, hey? I don't question it much, but I did ask if there are any books I can read about this type of treatment. He replied that there are, but they're still all in a foreign language. We also discussed Luke's diarrhea that he had for a few weeks, and the most likely cause is a "bug" just like daddy had. We tend to over-react when Luke has diarrhea... wondering if a specific food is causing him problems. Dr. W. told us to ease up on the paranoia and relax... we could drive ourselves crazy worrying about everything we feed Luke. Everything in moderation. We also mentioned Luke's bloated belly after eating, and he said that Luke still has some yeast... there are 3 kinds and Luke has only a little left of one kind. He's being treated for this as well. We currently have 7 bottles we give Luke either 2 or 3 times a day.

The biggest deal this month is that Luke is no longer anxious. He has typical body confidence, as in he is leaning back on the couch, jumping (a little), lying down on his back, rolling around. Luke used to HATE leaning back or lying on his back. He would totally freak. Now he actually LOOKS UP at the ceiling, lights, and sky. He WOULD NEVER lean his head back... ever (which is incidentally why he wouldn't tilt his head back to drink from a cup and he would freak out when we laid him on his back for the EEGs at Children's Hospital). You may ask what brought about this change? I don't know specificallly, but I would like to believe it's a combination of the Silver Birch and anti-anxiety drops, combined with the Tomatis hearing training.

December 15-19 we went back to the Bosco Centre in Coquitlam for the Tomatis Hearing Training. Luke was once again, well-behaved and it was not as difficult as it has been. Last time he spent most of his time sitting on the floor by the toys and putting them in his mouth. This time we built a few things and he did not mouth that many objects. He was most enamoured by the little lego doors and windows, so I built him a little house with lots of doors and windows. He likes putting things in cupboards and so he filled his new little house with stuff. It was fun. The best part was he signed that he wanted to play with a puzzle. This is the one made of small coloured geometric shapes (thin pieces) and we placed them on a board with the picture. He's been doing this in his ABA programs. We would take turns and he would place them in the appropriate spot. It was amazing to actually "play" appropriately with him. I knew it was clean-up time when he started to laugh and put the pieces on the wrong spot intentionally... little stinker. This time he actually went on the swing with me, but didn't like it much. He does love the mini tramp and bounced a bit, and we spun a bit on the spinning board. He did not screech too much, but enough to be somewhat annoying. Fortunately, for the most part of the week, we were the only ones in the there. I met with Dr. Larre at the end of the week and mentioned that Luke has the odd word "up, down, more, go". He was pleased and said it starts with 3 words, then 10, then 20, and suddenly 100 :). He also explained that the screeching was a side effect of the training. Luke's been exposed to extreme high and low frequencies (to exercise the inner ear muscles so they'll work better). It's likened to being given caffeine or a drug for a week.... after the week we "crave" the drug or, in Luke's case, the "high frequency" so Luke is creating it as a stimulation. This will taper off over time, and after each session it will become less and less as he begins to hear/find these high frequencies in ours and his own voices. What a great explanation. It's made us much more tolerant of the screeches and it definitely is much less this time around. Dr. Larre did recommend that we return in 3 months time to increase his improvement. Luke's dad and I will discuss this in the New Year. Each week is $675.00.

During the week of Tomatis, Luke and I went to see Dr. Bratt in North Vancouver. She answered all my questions, as usual and we agreed to add Folinic Acid to Luke's long list of supplements, as well as another MultiVitamin at night to boost his Zinc levels (known to improve taste). I updated her on Dr. Wagstaff's treatment and she was very interested in the cat/dog allergy treatment. I gave her my last "new" (newly published) book by Sally Kirk and she has not read it yet, so she'll read it before our next meeting. She HIGHLY recommended Hyperbaric Oxygen Therapy, so I will research the options. This "controversial" therapy is not covered by any charities so we'll be on the hook for this treatment which is anywhere from $3600-$4300 for a 4 week, 40 session treatment. There is a facility in Richmond, Vancouver and in Coquitlam... so I will look into these in the New Year. I'm hoping our income tax return might be able to cover this. We are also looking at a Developmental Vision diagnosis with a doctor in Langley. I've spoken to them on the phone and this would be a two-week (3 appointment) process that will cost $425.00. We will look at scheduling this sometime in the New Year as well. We are also going to begin putting glutathione cream on Luke's liver. I've read about glutathione and it's importance, but can't recollect right now what it does... I'll try to find out again and post it here later.

I've been in contact with any other mother who is desperately trying to help her child (other health issues, but is also exhibiting autistic tendencies). All the treatments and recommendations I make cost SO much money because the government funding is for very specific therapies only. Ideally I would like to start a fund and hopefully people would be willing to donate money so I can help these people who contact me. I'm not sure how to begin this, so I'm hoping to research some options in the New Year as well. If anyone has any expertise or suggestions that would be appreciated (email below).

A couple things to note: One night during the Christmas season we went to a friend's house and they have 2 cats and a dog. I thought for sure we would have to leave after an hour because of Luke's allergies, but he did not react AT ALL. Normally he starts with a crazy runny nose, and after an hour he starts rubbing his red eyes and we have to go. At my sister's as well for our family Christmas I thought he'd have a reaction to her dog... but he didn't! (she's in a new house, but in her old house he would have a reaction). I was informed that the dog was hypo-allergenic, so perhaps this was why? Who knows. The "big" test will be at the lodge where we spend New Years. They have cats and dogs everywhere, and Luke always has a reaction. We will see and report what happens.

I have to mention that a couple weeks after the Tomatis Hearing Training, Luke is talking more and more. He copies his younger brother's words (which are "sort of" words... like "gacka" for cracker and "ankie" for blankie). I wonder if it has to do with him undestanding Joel's pitch better that ours? Who knows. He's definitely starting to talk... yesterday is was "appow" for apple and "day-dow" for playdoh!

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I also met another mom in Dr. Wagstaff's office who has her boys on a gluten-free diet. She emailed me, so I put together a list of foods I give the boys. My boys are on a much more limited diet (no wheat, no dairy, no corn, no soy, no chocolate, no bananas, no eggs). Here's what I sent her; some of the bold has links to the manufacturer's websites.

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