October 7
Luke's preschool pictures actually turned out pretty good. I'll post them when we get the full-size prints back.
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The Richmond Hyperbaric Oxygen Centre has updated their website and apparently we've been youtubed. Our interviews (2) are available on youtube or through their new website. Here is the link to their new website: www.richmond-hyperbaric.com.
And here are the links to the interviews:
Part 1 http://www.youtube.com/watch?v=d9FCnq7fnj8&feature=related
Part 2 http://www.youtube.com/watch?v=hvcBcHrW_gw&feature=related
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We were on the coast this past weekend for time with family and friends and an appointment with Dr. Bratt. Just before the appointment we were walking around in her beautiful garden and Luke stopped me and said "I want to mell (smell) this yellow flower"... I immediately counted the words... 7!! and proudly told her about his 7-word sentence. We brought her flowers as well, as a small way to thank her for all she's done for Luke (it's been 2 years since he was diagosed). We will continue to meet with her, but less often as we've done all we can do D.A.N.-wise to date. She will be attending the D.A.N. conference next week in the States, so we're looking forward to hearing any new breakthroughs we should try.
We did discuss a few things:
1. We can try 5HTP which is beneficial for reducing dopamine, as Luke's excessive dopamine is causing repetitive behaviours and activities.
2. Continue the B12 shots.
3. Reduce the Neuropro to 1 tsp a day, since we're also giving him OrthoMind.
4. Apparently the H1N1 vaccinations have thimerosol (mercury) in them, so that's an obvious "no"... recommendations is to increase antioxidant foods (raspberries, blueberries, etc.) during this flu season.
5. We can increase Luke's probiotics since yeast seems to be an issue again.
6. We informed her of the craniosacral therapy.
7. Cholesterol capsules have made a huge difference in Luke's awareness and processing time. We will need to get him tested again in the next 6-8 weeks along with his iron levels (bloodwork).
8. He has a "ring" red spot on the back of his upper thigh. This is more than likely a fungus. She recommended using either grapefruit seed extract or tea tree oil to treat this.
9. We are not too concerned about his weight at this time.
10. We went over the HBOT results and were happy with his progress. We will be doing another session during the month of March 2010.
October 25
So Joel has a nagging cough and of course I'm concerned that it's H1N1, but so far he's relatively unfazed by it... meaning no fever, no lethargy, a little bit crankier than usual, but otherwise in good spirits (also meaning it can't be H1N1, but it's not over yet). Luke, Luke's dad, nor I have any symptoms at all, which is surprising since I had resigned myself to the fact that we'd all be sicker-than-dogs for at least a week or two and it hasn't happened yet.
Luke is a little worrisome in some aspects, but phenomenal in others. When he is by himself, I would have to say he's just bored and tends to "stim" as far as dropping things from the railing (which he knows is taboo), throwing hundreds of little toys behind the couch (ALL the little people and all the mini-food items). This is annoying... yet I find it difficult to constantly distract him by entertaining him. I've decided to relax about this as he's excelling in his programs and is impressing the preschool.
To give an idea of Luke's latest abilities, I'm going to quote from Miss M.'s and my back-and-forth book for preschool:
October 14: First circle time — Miss R. wanted some children to demonstrate the proper way of tucking in a chair. L turned to me and said "Tuck in chair". I asked L "Do you want to tuck in a chair?" L responded by standing up to go. I stopped him and helped him to sit down and hold his arm up. Miss S. quickly chose L as the next demonstrator. On his own, he went to one of several chairs that Miss S. had pulled out from the tables around the room. On his own he tucked a chair in and returned to the group.
October 16: Getting ready to go. L is now able to organize his gear so he can carry his backpack, coat and shoes from the cubby area to the large carpet without any help. I think he was so please and maybe amazed, he told me about it: "I got my backpack... I got my coat... I got my shoes".
October 21: L appears to understand several full sentences. I am trying to carry on normal casual dialogue (monologue?) pausing for his response. He is attentive, with lots of smiles (like "You Crazy Lady") and sometimes frowns with "No"... at times when I'm presenting ideas he probably doesn't like. [Later that day...] L successfully put on his mitten with thumb going in properly, without any further assistance. Well Done Luke!
At home, Luke can now put on his own underwear and pants, and take them off. Still needs help with the shirts and socks, but we're working on it. He is quick (almost too quick) to ask for "Elp" (working on the "H") and I explained to him today that he would end up living at home forever if he didn't start feeding himself more. Had a great conversation about independence and that we were teaching him to be self-sufficient. This was after he insisted on having me feed him the rest of his mango, which he had already half-eaten by himself. He gets "helpless" mostly around mommy, and I know it's partly my fault... anyways, he seemd to be taking in this advice and a couple minutes later he picked up the fork and continued to eat. Sometimes I forget how much he understands, but it's important with Luke to get his undivided attention first. He tends to have his own mind-set and is not always easily swayed.
Luke's daily words:
"Want to go brush teeth"
"Want to come up on counter" (where we feed him his "vitamins")
"Want porridge" (prefers strawberries and peaches in his porridge)
"Go pee"
"Joel wake up" (if Joel's sleeping in)
"Want to crack egg" (they love to "help" mommy bake)
"want doof (juice) in gippy cup (sippy cup)" (I LOVE hearing that one... makes me laugh)
"want to come up on mommy" (I remember YEARS of trying to get him to say the simple word "up")
"want to tit (sit) on mommy" (haha)
"where going?"
"want jump" (he's jumping off everything)
"fall off game finished" (he knows we don't want him to push things off of counters or tables just to see them fall)
"eat" (he's always hungry, even after he's just eaten...)
Remember when we never thought he would talk?!?!??!?!
I also have to tell everyone that Luke's dad took him to get his haircut one Saturday and the hairdresser asked him how old he was. Luke said, after a bit, "Five". Luke's dad was shocked! The team has been practicing this question with Luke for a while now. The next questions to work on are: What's your brother's name? How are you? and What's your last name?
Songs are also a real treat now, as well as poems. Luke (and Joel) are filling in the missing words of the many poems and songs I've been reading and singing for the last few years. A particular favourite is "Humpty Dumpty". Tonight they filled in "wall", "great fall", "horses", "again". Luke also knows the BubbleGum song and Slippery Fish songs very well and it thrills me to see him "do the actions". Way too adorable. Oh, and they're getting better and better at the two verses of our mealtime prayer; Luke will also often say "Amen!" after we're finished praying, without prompting.
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We had a great team meeting on October 15 and Luke's program has been jam-packed with tons of new games and lessons. He seems to be learning at a quicker pace than ever (finally gets "sorting!" yay!!!!). The team has begun the "Handwriting Without Tears" program and Luke is still learning to draw circles and lines (getting better and stronger!). We're also focusing on the "phonics" of the letters; he seems to be getting this pretty quickly too (I'm praying it's a result of listening to his favourite Leapster Phonics Bus for the last 4+ years, ayiyiyiyiyi!). We've brought out the new LeapFrog computer and he was not interested at first, but became much more focused on the tv when his "prism" glasses were put on. I had read in Mel Kaplan's book (Seeing Through New Eyes) that this might make a difference. I look forward to continuing the visual therapy under Dr. Darren Sass and we'll be seeing him at Christmas time to know the next steps. Luke is currently doing very specific exercises with the glasses on, to help expand his perceptions.
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Luke's been doing this somewhat charming but sometimes annoying stim of grabbing my face, looking at me closely, waiting for me to smile and the he will giggle and smile and say "Fin" ... whatever that means. I figure I'll keep smiling and teach him the word "Smile", but some days it's a little annoying. Just a quirk of his to keep track of.
Luke has also been amazing me by actually going and playing by himself when I ask him to (he loves to hang around me). He still does not often play typically, but will sit by the Little People house or farm and open-close the door and throw Little People through the windows. Everyone's working on getting Luke to play imaginatively which does not come easy for these kids. Joel shows him sometimes, so I'm hoping that will rub off more. Joel is not yet aware of Luke's delays or diagnoses, but as Joel passes Luke developmentally there may come a time to talk to him about Luke. In the meantime, they play well together, fight together, and Joel is more than happy to join Luke's ideas of fun. Joel's even been know to shout "E Now Ga Way Ya", one of Luke's favourite sayings ("Enough, Go Way?"... perhaps he will tell us one day!)
Quirk Update (from July 2009)
> Still obsessed with screws, lights. Always points to one screw and says "screw" and then points to another screw and says "screw" and then says "two screws"! He looks at us to acknowledge him every time; and may repeat it a few times. Does the same with lights, and on the odd occasion does it for nails or holes. He does this even though there are more than 2 screws; so we try to count higher than "2" with him and show him all the screws.
Not obsessed by screws or lights anymore, but has a different toy in his hand every day; it usually has a "double", for example, if he has a blue lid, he constantly asks and looks for the green lid; if he has a red car, he constantly asks and looks for the yellow car.
> Still screeches/screams. We continually say "Don't scream. Talk." And then he says "Mommy" and looks confused. Sometimes he actually talks and asks for what he wants.
No more screeches THANK GOODNESS, although he has been yelling "Mommy" a lot (even when I'm RIGHT THERE). Doesn't usually have a question or anything, just likes to annoy me by getting my attention I guess. The old adage "be careful what you wish for" comes to mind — haha.
> Insists on us helping him go to the bathroom even though he can do it on his own. He seems a bit "helpless" and will ask for "help" quickly... is used to and likes people doing stuff for/with him.
Goes to the bathroom completely on his own, except will sit there and wait until we come and check if it's poo or pee. Doesn't realize that he can just get up when he's only peed. Okay by me, as this is a "safe" way to monitor what he's doing. Plus you buy yourself a few minutes as he waits patiently on the toilet until you come check on him! It's also incentive to make sure he washes his hands thoroughly, especially during this H1N1 season. He will also always tell us he has to go to the bathroom prior to going... at least we always know where he is!
> Still will not get off the toilet or get out of bed without seeing us first.
Toilet, still waits; Bed... will now get up when we call him from our bedroom down the hall (most of the time).
> He regresses to old quirky behaviours when we change his environment; it's how he copes with transition. Subtle behaviours... nothing too extreme.
Still does this, but has new stims and quirks even at home now, that we're hoping will pass. I do think it's related to an increase in bad yeast in his gut, but we'll find out more when we see Dr. Wagstaff in November. Luke's poops were really great after the HBOT but have been diarrhea for the last couple months. This coincides with bad yeast, so I'm hoping for some answers with Dr. W. soon! We may need to be more aggressive with his probiotics again...
> Still often screams to get our attention.
No. Screaming gets one warning... second time and he has to sit on the "naughty step" until he says sorry (which is pretty quickly!).
> Doesn't ride a bike... will sit on it, but not pump his legs.
Not worried about this for now as it's winter. We did purchase a scooter that we'll try in the spring. I've also read that the visual therapy can make a huge difference in bike-riding.
> Doesn't always respond as quickly as we'd like. Still "fades" a bit and is not quick to reply... sometimes you have to wait and he will; most of the time he's focused on something else, or thinking about something else so it's hard to get his complete attention.
Much quicker response time... faster and faster and faster. Does however still get distracted and focused on his own agendas... and it can sometimes be difficult to get his attention; but not at all like it used to be. I remember yelling his name without it fazing him!
> Still does not dress/undress himself. Will take pants, underwear, jacket, socks and shoes off by himself; but not shirt. And only puts a jacket on by himself without help (but needs help with zipper). Getting better! Successful putting pants, underwear, shoes, jacket, hat, and even mittens on now! Working on the shirt... He will pick out a tshirt from the correct drawer when asked; and will put his dirty clothes in the laundry hamper.
> Still has sensitivities with his hands and bare feet. Hates having little bits of dirt on either, and needs help or screams to get it off (occasionally).
Not as stressed about this, but will freak out a little and point out bits of spilled porridge/food on his clothes; and not a fan of water on his "gippy" cup ("Mommy, Dry") or water on his hands, but getting less and less sensitive. Hates having the sock toe seam go under his foot ("Mommy, Funny"), so we have to make sure they're on properly.
I'll try to write some new quirks in the next week or so....
October 30
Luke has lost his voice a little due to a cough, so we're keeping him home and have cancelled his ABA sessions and kept him from preschool. Hopefully this is not H1N1. Currently 24% of Luke's elementary school where he goes to preschool are away sick.
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Ms. A., our "first" Behavioural Interventionist came by for a visit the other day. She hasn't seen him since May and her mouth dropped when she heard Luke talk! And the jumping, and the getting the juice from the fridge upstairs. She was very pleased to see how well Luke was doing, and how much more improved he was. It was great to see her and get her objective, yet "knowledgable" opinion of Luke, and it was a nice reminder again of how far Luke has come.
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Miss M. at preschool the other day mentioned that it was tough to write anything down in the back-and-forth book because Luke's behaviours are fairly typical. Apparently he loves to giggle a lot :).
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I need to write some quirks, that we'll focus on over the next half year:
• Luke turns my face to his and waits for me to smile and then says "Fin" - not sure what that means.
• Luke constantly says "Fall Off Game is Finished"... looking at us in a perplexed way with an object teetering on the counter or table edge.
• Luke still tells us each and every time he has to go to the bathroom... like he needs permission. And he still sits and waits for us (I'm okay with this for now)...
• Luke still dawdles and is pretty helpless at washing and drying his hands. Gets pretty preoccupied with himself in the mirror.
• Luke still needs a toy or two in his hand, and freaks in the night when he can't find it. Right now it's a blue lid and a green lid.... constantly asking me where the green lid is (if he's lost it), to the point where he answers his own question "I don't know, find it" (Guess I've said this enough times!)
• Luke always wants help to eat. He does ask for help. We do our best to have him take a turn, and then we take a turn (almost always we have to put the food on the fork). Trust me, we've had every kind of argument, discussion, disciplinary action to get him to feed himself... most days we just decide not to battle with him. Often, when we walk away, he will feed himself if he's motivated enough, so you know he's just playing us! But we'd rather not have him eat meals by himself, so we continue to "elp" him. He does eat well.... likes his condiments (mustard, ketchup and guacamole). When we help him, mealtimes are actually quite pleasant, especially with Joel's quips and comments (Joel's trying to say knock-knock jokes right now... thinks it's funny to knock on the table first).
• Luke cannot completely dress himself yet. He is oblivous to clothes or fashion... not caring what he wears, however he does choose one shirt over another when given a choice.
• Luke does not always play appropriately with toys when he's by himself. He'll sit by the little people farm or house, but often just throws the little people through the window and he still is a little obsessed with opening and closing the door of the little house. It's getting better though. He does say "Play Caribou" or "Play Candyland" so he seems to enjoy these "board-type games" with Joel and me. They're very good at taking turns. Two weeks ago Luke would be able to play one game properly and then start acting up, but now he's focused and can play again and again and take his proper turn and play the game the proper way. He still seems to get easily distracted. Joel is so focused on the game that he gets annoyed when Luke doesn't participate properly or in a timely manner as per Joel's world (and loudly proclaims his annoyance! Luke is often oblivious, or giggles which just fuels the fire).
• Luke still does not watch tv for any length of time. He'll glance at it occasionally, but is easily drawn away. He can recognize cartoons, but that's it.
• Luke's speech is getting better and better... we'll have to work on pronunciation, and probably pronouns, and all the other challenges that come with autism. (He often says "Luke's turn" instead of "My turn").
• Luke still does not walk down the stairs with every other foot.
• Still touches things/objects to his mouth.
Well, now that I've written them all, they really don't seem like that big a deal do they? How exciting. Even Miss A. said there wasn't too much about Luke that would set him apart from other children his age (and she's been training to be a teacher for almost two years now). And he still has two years before going to Grade One! Yay Luke!
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