March 16

I can't keep up with the drama this month. It's been a bit gruelling. Let's start at the beginning: Dental Surgery. Made it to Kelowna for the 11:30 appointment on a Tuesday only to be told it was only a 5 minute "consultation"... no surgery planned. Oh my. Luke's dad was infuriated, as was I. He chose to handle the situation while I dealt with the boys. They obligingly fit us into a 2pm appointment for "laughing gas" and extraction with needle freezing. Now my heart said "I don't think this will work", but my head said "Give it a try... it's just two teeth, quick extraction... super quick." Listen to your heart. The laughing gas was not too difficult, the NEEDLE was the problem. They were persistant and tried 4 times, but Luke was freaking out too much; so no luck. What a long bloody day. 2.25 hour drive back home with no results. Needless to say we were quite frustrated. But we had a new plan: knock-out surgery on Friday in Summerland (2.75 hour drive one-way). So daddy took another day off, and we left early for the hospital in small-town lake-side Summerland. Don't be fooled... "summer"land was winterland—freezing blowing winds in February! I want to say a thank you to the dear departed Steve Jobs right now. Without the iPad I would have gone crazy. The boys took turns for most of the day, and fortunately when we arrived we had a waiting room all to ourselves with Treehouse on all day. It could not have been more ideal. I am not a big electronics fan, but on a crappy day like that (or when the rats are both sick), I LOVE them. iPad, tv, games on my phone rotation. Awesome. We go there at 11:20; after quickly snarfing down McPukes (lol), and waited. At 11:30 he received special pajamas. At 12:00 he received EMLA cream on top of both hands with tape overtop to numb the areas for IV. At 12:30 he received a "sleepy-forget-everything" drink (magic juice!). At 12:45 they brought out a gurney for him. At 1:00 they wheeled him into the surgery room. At 1:45 the doctor came to talk to me: he recommended taking out the two other teeth (on either side of the top front top) as they were quite ground down and would probably hit a nerve and cause an abscess again. I agreed. At 2:15 the doctor came to talk to me again: he had taken the liberty of getting xrays done of both upper and lower teeth: Luke had four cavities in his four upper remaining teeth (molars); he recommended filling them ($850). I agreed. At least they were composite fillings (white, not silver). Phew. At 3:30 (remember the quick extract 2 teeth? Ha), they came to get me... Luke was still totally out of it. It took a while to wake him and make him drink and get him dressed. We carried him out there around 4:15pm and headed home. He was cranky... I plied him with gingerale and peaches and all soft foods, anything left in the car: sauces, water, icecubes. He literally screamed for ice cream... which OF COURSE I didn't have. Kept promising it to him when he got home.... so almost three hours later we crawled in our doors and fed him ice cream... as much as he wanted. He was sated, and he slept. Despite the trauma, he was actually quite the trooper. Keep touching his mouth (pulling out strings of gauze much despite our freaking out fear). The next day he was fine except for a bit of behavioural backlash. Nothing we couldn't handle. Poor gaffer. Joel was, once again, an amazing tag-along. He hung out with daddy and got to enjoy some quality time with him. He was patient and did not crank out at all even though it was a long and tiresome day. Great, great kid. Very proud of both of them.

OK... more drama. It is now Spring Break. I am holed up in my sister's spacious "loft" on their farm in Abbotsford. It is beautiful out here... peaceful, quiet and very, very, very rainy. Did I mention it was rainy? We are here specifically for an appointment with Dr. Swingle for neuroptherapy / biofeedback. Well, that didn't happen as planned. We've been here since Saturday. It's now Friday. Luke woke up at 12:30am on Wednesday morning and puked. And puked. And puked. And then had diarrhea. Until about hmmmmm 1pm. Okay, not constantly, but at first every half hour; then every hour. He was sooooo sick. He finally picked up later in the evening and was pretty good on Thursday... listless and weak, but better. By Thursday evening there was only diarrhea, and he managed to get a bit of food down. We visited G&G for a while and then went to Aunt V and Uncle A's for dinner. Then I tucked him in bed early to catch up on some sleep. A little while later I tucked Joel into my bed and he shocked us both by puking all over the sheets. Ayiyiyi. Round 2, Boy 2. This one only lasted until 2am. Wow. Today is therefore Movie Day; with a quick walk for fresh air. Trying to get liquids in and rice crackers. It is quite the brutal "flu". I do not wish this on anyone. BTW we rescheduled the Swingle appointment. They gratefully got him in next Wednesday morning, a day before the follow-up appointment on Thursday. Yay.

Photo above is Luke on the couch in his pjs, aka Spring Break 2012.

Other tidbits: Everyone here (my family / friends in Abbotsford area) is impressed with Luke and his progress. People who work with children with autism say he is nothing like them; people who are just meeting him would never say or guess he had autism; my brother who hasn't seen him in 2 years was blown away by his speech and his physical abilities. I am thrilled. My father seems to think Luke should lose the label... I am not quite ready.

March 28
I am finally home in Kamloops, and happy to have two healthy boys again who are back in school. Luke had an appointment with Dr. Sass while on Spring Break and the eye doctor was impressed with Luke; specifically the fact that he was much more "engaged" than ever. Still not wanting eye glasses, but wants to work on his "near" "far" eye control. I have an exercise for Luke that I need to create. It's on my list. I asked about the Irlen syndrome and was pleased with the doctor's candor. According to him, it's a "sexier" cosmetic solution without getting to a possible serious underlying eye disorder. These disorders he checks for regularly in Luke. As far as the "pink" paper being easier on Luke's eyes, he did say that if it's working, use it. He also honestly admitted that he's never met or studied the Irlen Syndrome indepth, so do not just rely on his opinion. He said others feel the same about his practice / business (developmental opthamology), so take his opinion with a grain of salt. Hmmm... I said I would consider it. I still think I'll meet with the woman in Kelowna since I spoke to another mom at our last local parent's support meeting who was a firm believer. I'm going to go to the source and see what the consultant has to say. I am assured that she is a direct contact from www.irlen.com; as one of the doctor's concerns was a lack of accuracy and thorough-ness being done by "quackery" people out there. Lol. He's so awesome. One of those dry-wit kind of guys.

Okay... now the real interesting stuff!!! Dr. Swingle!!! Mom and I took Joel and Luke downtown Vancouver on the Tuesday night to stay in a hotel overnight as the appointment was at 9am Wednesday morning and I/we didn't want to deal with rush hour traffic getting into the city. Smart move, although it was wasted on the boys who only wanted to watch Treehouse and play with the iPad which they can do anywhere. It also didn't help that they were super tired still from the "sickness" and it was quite cold outside (no walking... tired, cranky, cold boys). ANYWAYS, Luke and I walked to the appointment and Luke participated very nicely... at first. They got the "cap" on his head, and the nodes clipped to his earlobes, but when they took out the syringe filled with gel to insert into the holes in the cap, he FREAKED. We tried a few times, but no luck. I was kind of peeved, but of course also felt for the kid. He's been through so much. We even demo'd on my head, my hand, his hand... it was NOT going to hurt (dull end syringe like the ones with baby Advil). So that sucked. BUT the gentleman did get a reading using a single node in several areas on Luke's head. So it wasn't a total bust. Plus, the bonus was the testing was not $490 as stated, but only $160. Phew. Anyways... went back to Abbotsford that day to wait for daddy to arrive. He did, and early Thursday morning we headed to the follow-up, analysis appointment with Dr. Swingle himself. I must say that I was pleased Luke's dad was able to join us... he admitted to being extremely interested because the charting / mapping of the brain is all science. Science is something Luke's dad understands.

The doctor was very reserved, very gentle and spoke in a kindly manner. Luke's dad liked him immediately. He began to discuss Luke's brain areas, starting with the top centre (from ear to ear). This is the ADHD area which is the theta waves. It deals with concentration, focus as well as Luke's seizures. The issue in this area is a lack of stimulation so these children are looking for stimulation. He suggested a CD of "static" for $22 that, if played just above a whisper around Luke when he's engaged in things at home, will stimulate this area and increase his concentration and focus. The irony is you don't think these children need more stimulation?! Anyways, that was interesting. The seizures: On a scale of 1-15 Luke is a 4.6. What you want is to be below 3.5. Dr. Swingle was pleased that this gap was small enough to become closed long before May 2013 when our next EEG is scheduled; when we had planned to wean Luke off his anti-seizure medications that he's been on since he was 9 months old (seizure-free 4 years woo hoo!!). Luke's dad was over-the-moon to finally receive "stats" on where Luke's seizure level was at (as opposed to the last six years of vague-ness by neurology at BC Children's Hospital).

Luke also has a inefficiencies in the frontal area, which Dr. Swingle refers to as the "parking deficiency", meaning Luke cannot always "shut or park the brain"; ie turn off his brain, stop thinking for a while.

Luke's T5 section (when you look at the back of his head, it is the lower back left area) has "excessive slow frequency" (sounds like an oxymoron???). This needs to be calmed down first... and then the issues in the T6 section (lower back right area) will either become resolved since the brain is a system; or it will be the next area to work on.

There is a section of the brain on the top middle (just back a bit from the "frontal" section) which speaks to the OCD "stuck in a loop" issue. Luke is .73 and we want below .6; He is 18 and we want below 15. I'm not certain what all the numbers specifically mean, but Luke's dad is once again just so thrilled to have some time of numeric gauge (lol).

Anyways, while we were there they had a cancellation so we were able to do one treatment session. Luke had to sit in a chair with a node stuck to his head and two clipped on either ear. He watched up to 6 different videos in total. The first one was 5 different "life-like" large bugs at the bottom of the screen which were crawling their way up to the top. Apparently if Luke concentrated on one he could "move it" to win the race with just using his mind (no mouse). Since this was our first session, the goal was to increase his concentration and focus. He was, obviously, quite fidgety and kept wanting to touch the screen (like an iPad, lol). The next video was bugs hopping onto each other (in a stack) with about 5 stacks. Luke could make the bugs hop faster (well, he couldn't of course; but that's the goal). The third game was to race the cheetahs from the left of the screen to the right. There was one with planets all coming at him (can't remember what he was supposed to do). And the favourite was watching a PacMan eat through the "dots" in the maze on the screen. Luke was quite focused for this one, so the technician used it twice up to 3 levels each. Then the treatment session was over (45 min). I asked for some clarification and she showed me the paperwork (charts and graphs were created for each of these games). We were looking for "low numbers" and Luke showed a couple 2.6s; but he also showed some 3.3s which were considered too high. During the treatment the brain was actually re-structuring itself while Luke attempted to concentrate and focus. It was very interesting, especially because it was almost fun and engaging. Luke was very bratty and was not sure about the whole thing, but it was a first time so I'm sure he will get used to and like to play the games :).

Anyways, we rebooked for Saturday May 12 (2 sessions), July 18,19,20 (3 sessions a day = 9), and August 12-18 (3 sessions a day = 18). We have a place to stay in May and July; and have booked a hotel for August... which we are looking very forward to because, as always, we do our best to combine a family vacation with Luke's therapies. We can't wait to go to English Bay beach, walk/bike the seawall, go to the Aquarium, Granville Island, Lonsdale Quay and Capilano Suspension Bridge (mostly just with Joel as Luke will be busy, but we'll get him out and make sure he has lots of fun too, of course!!). I'm also excited about checking out more GFCFSF options in downtown Vancouver's food stores and restaurants. Yay.

I found this on a different website as it better explains the results and process. Neurotherapy is used to attempt to change the dysfunctional brainwave patterns of the autistic child towards normal. Research and clinical practice indicates that this approach can improve cognitive deficits, concentration, impulse control, depression, anxiety and seizure disorders. Neurotherapy is only used with high functioning children with Autism to improve attention deficits and learning difficulties.

Just wanted to mention the whole "faith" thing again... we had prepared to pay for all this ourselves (somehow, probably Louisa the Visa), however I appealed to www.copsforkids.org to see if they'll fund the neurotherapy. They kindly said "no", BUT they did offer us a $2000.00 grant for travel expenses (gas, $100/hotel, food for one person + Luke). This is a very big help. This blessing was given to us in November last year. Then I went to an Autism Parents Support meeting a couple weeks ago and was told that our Autism Funding ($6000/year) will pay for the neurotherapy. WOW. (See EVERYONE should come to these meetings... there is SO MUCH TO LEARN FROM EACH OTHER!!). I had to do some fancy accounting (ayiyiyiyi, numbers make my head swim), but I managed to allot about $1800.00 of this year's $6000.00 to go to this therapy, which will take us to the end of July when our Autism Funding contract ends; with a new one begining August 1st. Therefore, the sessions in August will come out of next year's budget/funding. Now you're probably curious about cost? Well, it's bloody expensive, lol. Initial visit was to be $490.00, but since Luke wouldn't participate for the whole head/cap gel thing it was reduced to $160.00. The follow-up with Dr. Swingle was $190.00. The first treatment session (45 minutes) was $115.00. So each meeting with Swingle is $190.00 and we'll have 3 this summer. Each treatment session is $115.00. So... grand total for this year's budget is @$1900.00. August's will be @$2200.00. Holy Toledo. And to think MY GOD made it possible to have it pretty much all paid for is what I'm talking about!!! Woo Hoo!!

Also have to mention the generosity of a wonderful couple in downtown Vancouver that are giving up their apartment for us for the 3 days in July (free). How awesome are they?!

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On Saturday, March 31, Luke attended N's birthday party. There were (believe-it-or-not) 16 kids there. Despite the insanity (including the mom's!!! awesome woman) Luke managed. Instead of "playing" with them all in the basement (WAY too overwhelming) he played with a balloon. Sometimes some of the kids played with him, so that was cute. And some of the kids were SO SWEET to him. It was awesome to watch. This was a "chef" party; so they had to make cupcakes from scratch, make their own pizzas, decorate paper bags, eat pizza, decorate cupcakes and eat them, and open presents. Luke lasted 2.5 hours with one minor food infraction (no biggie) and enjoyed his GFCFSF pizza and cupcakes along with the other children. It was great. I was, however, TOTALLY exhausted when it was over. Some days I really feel my age; but as long as I don't look like a grandma (which I could be), I'll keep pretending I have youthful energy. Fooled? Lol.

Got home from school yesterday and there was another birthday invitation. Ayiyiyi. Haha. Here we go again.

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Luke has not been himself for the last few weeks. I noticed something changed the last Sunday of Spring Break, but cannot put my finger on what may have caused it. Anyways, he was so amazing the Saturday before that I can even remember saying in my head "My son is recovering!" (I still BELIEVE!)... he has now relapsed or regressed, and I'm simply assuming it's because he was way too overwhelmed the last few months: dental surgery, puking/diarrhea for two weeks, and then he fell hard on his knees from a tall chair in a coffee shop (bad mom). And then his favourite assistant Ms. E. was away for a week and he just could not cope anymore. The school called me to pick him up at noon for that week. When she got back, he easily stayed the whole day and I was told by the teacher that he was "an angel." Ms. E. and Luke have a very, very special bond and relationship that a mother can only pray and hope for their child.

As far as the "step back" as I like to call it... this time I am not worrying. Luke has come SO FAR. He will step forward again and again. I will be patient. I bumped into a wonderful client the other day who is coping with her own issues of a loved one with dementia. She met Luke and was stunned by his progress to the point where she said "I have goosebumps!" She talked about an Oprah show where a mother of a child with autism was interviewed and called on the carpet about a lack of love or shine in her eyes for her son and how this was a huge hindrance to his progress (I didn't see the show, so am not sure about the whole context). Point is, my friend said she thought about me and my love for Luke and how far Luke's come. I know, I know. Kudos to me and maybe I'm a bragging a bit by blogging this, but my dad always taught me to "toot my own horn". This world has enough negativity; and we can all use encouragement!! Me, especially ;), haha.

Despite the behavioural step back, Luke has progressed verbally (see it's not like it's THAT bad). He's been talking more and more; providing lots of spontaneous conversation. Whenever I type here I forget the examples (mid-forties mind blank), but there have been many recent moments of great sentences and clearer speech. Yay.

It's time to talk about Joel! Here are some Joel-isms that I just wanted to record somewhere:
• I got to sit by Carly today in school, and it made my day.
• I don't matter (doesn't matter to me)
• Is that a spare word mom? (referring to the word sh*t)
• Let's count _________ (danger boxes, smart cars, mini coopers) on the way to school and see who gets the most (EVERYTHING'S a competition).

He LOVES to play golf, inside on the Wii with daddy, or outside in the back yard or mini golf. He played with Grandpa and Unca Crazy during Spring Break and got a hole in one again. Joel's dad can't wait to take him to the driving range soon. He got quite frustrated with Luke the other day, so I finally said (without thinking) Luke has autism and that everything is much more difficult for him... so we need to be patient and help him. He was quiet and didn't say much about it. It was time he was "told" as in the fall he'll be in school full-time with Luke and he's just becoming more aware. Joel will be 5 in May. Joel did ask me one day, "do I have to go to Chris Rose when I go Grade 1?" I simply said no. After I told him about Luke and the autism, he said "I don't have to go to Chris Rose."... he gets it.

Joel has three playdates this week. He is well-liked and has some really great friends in his life. The other day a woman came up to us in the hallway at Joel's school and said "Are you Joel's parents?" We said yes. She said "My daughter, S., talks about Joel ALL THE TIME, he's some kind of fabulous and Joel is her boyfriend." (Joel is totally unaware... despite the fact that this "little" girl often picks him up off the ground in a big bear hug after school). That day the mom had made AH-mazing cupcakes for the teacher's birthday (I'm serious... huge designed 2-colour chocolate butterflies on top of 2 different coloured swirly icings). Joel's dad said to me on the way out "If the mom teaches S. how to make cupcakes like that, she'd be more than welcome in our family!" Hahaha.

Joel often says "I love you mom" spontaneously, and even sometimes compliments my hair or my clothes. He's also VERY good at sharing. I bought him a small bag of chips yesterday and he ate half, saved the last half for Luke and even crunched them little the way Luke likes them and put them in his carseat for when he got picked up from school. He's just sweet like that. Even his teachers have said "He's the sweetest kid in the class". He'll help out others when they are struggling with a craft. Things like that. Just good people. Proud, proud, proud.