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Luke April 2012

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28 .




MAY . 2012>

 


 

May 28

(Photo above is Luke LOVING the roasted pig that we indulged in at my brother-in-law's 50th birthday party.. he CHOWED down on it!)

Been a long month.... but finally we have some sunshine in our city and in our hearts (a little)... which means things are starting to look up, albeit very slowly.

Ms. M at the school is spending Mondays from 8:30-12:30 with Luke, getting to know him, trust him and try to understand how he works. She's been great. She even spoke to the staff trying to educate them a little about autism and the respect for parents who want a Christian education for their autistic child. Hopefully she'll be able to take him on Tuesdays for four hours as well, but we'll see. In the meantime, Chris Rose has allowed Luke to come there on Thursdays so he's now with them Wednesdays, Thursdays, and Fridays. He still has horseback riding on Wednesday afternoons and I've put him back into Gymnastics on Thursday afternoons.

He is talking more and more at home, getting back to his old self, however we are still seeing lots of stimming, and lots of repetitive words, as well as OCD about doors. It breaks my heart that these things were all completely gone a few months ago, but I can only pray he'll continue to pull out of this regression. He is also clapping his hands together and making a strange noise (ever since the dental surgery), which is another stim.

More about the talking: Joel was mentioning a character that ate garbage (I think from Ratatouille)... and then Luke chimed in a story about when Max (from Max & Ruby) ate garbage and he laughed and laughed. This may seem trivial to most people, but the fact that Luke heard the conversation and relayed his own separate story that connected to the subject matter is pretty cool. Yay.

We did have a great visit with Dr. Wagstaff who assured us that Luke is indeed in a highly anxious state (internally) and he can help him calm down. He gave us chelation drops (to aid the liver in getting rid of the toxins from the sedation and the leftover stomach virus that he cannot seem to detoxify by himself). After 2 weeks Luke did seem to calm down, with Ms. M. noticing a definite improvement. We'll continue the drops for a while as he's not quite back to his old self. We did attempt to do the dark field technology with Mrs. Wagstaff but after an hour and a half of badgering Luke to get his finger poked (he literally seemed trapped in a corner of the room), the medicine had dried up and it was not going to happen. It was incredibly frustrating for everyone; Luke was petrified which broke my heart, and I was SO done (and said so). Afterwards, when it was revealed that Luke's body was basically in a state of "fight or flight" everyone calmed down and thought perhaps when he's less agitated we can try again. Perhaps. The good news for the Wagstaffs is that they received a grant to continue this research that was based on Luke's original blood sample... and they are requesting more families with children with autism to come to the clinic and be part of the study. The dark field testing is free; however the choice to take the recommended homeopathic drops is up to the patient/parents and they have to be paid for. I put the word out on our autism parent's email network.

We also drove the extra 20 minutes to Kelowna (from Wagstaff's) to see the www.irlen.com specialiast Bonnie Williams. She was so gracious and sweet. She pulled out a suitcase of coloured lenses and asked Luke if he liked any of them (orange, pinks, blues, purples). Unfortunately, we couldn't get an accurate read from him, but it was a familiarization meeting. She also showed a couple coloured papers for him to choose from and he ALWAYS picked the pink paper, so we've been on the right track with putting his exercises on the pink paper. We've been doing words from the Dick & Jane readers on pink bond and Luke's learned about 10 words already... so he's actually read the first 2 books all by himself! This is exciting. I love teaching him to read!!

We also had two more "sessions" with Dr. Swingle downtown Vancouver (biofeedback). Luke was SO great for the first one, playing computer games with his mind (no mouse... nodes were glued onto his ear and top of head). Our jaws dropped (me and the technician) a little because he got faster and faster and faster at the Pac man game. It was awesome to watch. The second session was okay, but he was obviously very, very tired. I'm not sure how three sessions a day in the summer is going to go. He was also "testing" the technician a little when I was out of the room (I left on purpose because having a parent in the room can be too distracting for the child). The technology was explained a little more to me... while he's "playing" there's a ticking noise. When Luke isn't focused, the ticking noise is sporadic, but when he's "on" the ticking noise is a wonderfully consistent beat. The brain wants this continual beat and will do anything to get it... so the more Luke concentrates, the more continuous the tone. It was fascinating... and exciting to see Luke progress. I look forward to the summer sessions and the results and the discussions with Dr. Swingle again!

Luke has slowly been playing with children again (just this week). We went to our trailer on the weekend and when he's upset he usually stays in the kitchen with the adults and eats :)... but this time he went and played with the other kids for a while (inside and outside). He lasted longer than I imagined, and then he gets too worked up to tell us he's tired (it WAS 10pm! what were we thinking?) and he reacts by throwing things (usually harmless, like a ball, stuffy or a toy, nothing dangerous or violent). It's a sign that it's time to go. We often try to nip it in the bud, but there are always exceptions and our lives must go on; as well as Luke has to get used to change sometimes. We also spent the May long weekend with very good, longtime friends at a cabin at Lac La Hache. Luke did okay, although he wasn't at his best. He did run into the others' cabins and jump on their futons; and throw tennis balls and apples at the cabins (fairly gently... not violently). The mildly upsetting thing was he had quite a limp which lasted for a couple weeks and we still don't know what caused it. That's the toughest part about not being able to communicate completely. But his leg seems better now. And everyone was gracious and kind about / around Luke even though he did not socialize much with the other kids. Perhaps next year (it's an annual get-together). We shall see. If not, it was no big deal. It was a strange place, strange bed, new noises and sensations... so I'm actually quite proud that he kept it fairly together.

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Joel has been Mr. Social lately, between playdates and birthday parties (we've had six in just a few weeks time). He's loving life and has a personal interest in money. His aunt S bought him a "Cars" piggy bank that shows the collected amount (digitally). HE LOVES IT. He always seems to find coins to put in... (had to call him on "where" is he finding all the toys and he had his first big lesson on LYING as he had told me his room, but finally fessed up that it was daddy's room... he was devastated when he wasn't allowed to sleep in the fort that night, but totally got the point... a couple nights later he bemoaned the fact that "why is it so HARD to tell the truth?", lol). Anyways, he's always trying to sell something... tried to sell me a piece of cauliflower from his plate today. Grandma Abbotsford mentioned she wanted to buy one of his paintings (which she did) and now he tries to sell them to anyone who will buy them. Today, May 28, Luke and I made a fresh batch of lemonade (Luke sucked on the lemon and wailed because it stung his dried/cracked lips, oww!!!). Joel insisted we sell the lemonade out front, so I made him make a sign and we sat on the sidewalk with table and chairs (it was a HOT afternoon). We were barely there when a lady stopped and bought half a cup for 25 cents. Very shortly after, a bus driver squealed to a stop and bought a cup... and then the neighbour's daughter came over and sat on the lawn with us and bought a cup. It took a little longer for two gentleman in a work truck to stop (they'd driven by once and must have turned around after a while!); they wanted to support the entrepreneurs. And then the neighbour grandmas needed a cup after their golf game so they finished it off (and paid double for the secret ingredient: mint leaves!). They mentioned something about taking it home and adding some gin (lol). It was a great time, and we sold the whole pitcher within 20 minutes. What an experience. We made $2.75. Luke helped... and yelled "Lemonade" whenever everyone drove by. It was so fun and funny at the same time. Unfortunately they want to do it again (ayiyiyi).


Luke

 
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