December 27

Can't believe this is now an annual report. Still trying to keep it up, but life is really really busy. I'm hoping this is a sign that things just keep getting better, but I also believe there was a huge relieving acceptance in my heart for Luke and wherever he's at in his world/life. A shift from actively and sometimes obsessively pursuing therapies to a place where I’ve lined up the therapies for the year and trust and relax in those decisions. Only time can show progress, so we watch and wait with patience and love. Luke has also made this shift possible by coming into his own as a young man. While his speech is still quite delayed, his actions and mannerisms show maturity. His sense of responsibility, and his humour have made the start of the teenage years almost fun. Watching him snort at us when he’s not pleased, giving us attitude, sometimes rebelling when asked to do something, has been refreshingly entertaining rather than annoying, as it displays “typical” behaviour. It makes us smirk, lol. The truth is, with the acceptance, came this peaceful feeling about realizing that Luke may stay with us for a long time, and to be honest, the person he has become after 14 years of growth is a truly nice guy. It’s not only Dave and I who enjoy his “quiet” (he still doesn’t talk much) company; Joel adores him; and he’s well liked in both school at youth at church. So for now, all is right with the world; and our sons are awesome, and I will revel in this.

The past summer was brutal. Yeah, kind of a dramatic word, but I was pretty blue and bitter. Luke contracted impetigo in June and missed a week or so of school while we hammered at this open sore flareup of both a staph and strep infection that is highly contagious. He bathed 3 times a day and we hit it with antibiotics, following through on all the necessary hygiene practices including daily sheet and clothing cleanings. Summers are the highlight of my life as I work from home and I spend every moment possible at our trailer at Mile High Resort (Face Lake). This was not to be, as once the first round of impetigo cleared up, the second round hit us early in July. Ugh. We were in Kelowna at the naturopath at the time, so opted for a naturopathic treatment rather than another round of antibiotics. This was just as effective, but either way, it takes a while for the sores to go away so our Mile High time was sadly shortened. While the sun shone wonderfully outside (pre-fire/smoky season) Luke and Joel watched tv while I worked. It sucked. Luke was barely out of the woods just in time for our 2 week holiday in August, so we were able to keep an eye on him long enough (mosquito bites were the worst for itching and scratching open and spreading the infection more!) to enjoy a bit of family and down time. It was interesting to realize how much we needed that vacation, and how hard we worked for it! This was our first full 2 week vacation together as a family since before the boys were born. The night before we went home I was finally in a really good relaxed headspace, due mostly to my kayak and the peace and connection I found with my God in the middle of a lake watching the gentle waves and the sun set behind the trees, while the eagle soared high above, and the loon called…

But I wasn’t ready for the school year to begin, and still had some bitterness. I may sound a bit ungrateful, but I was mostly pissed about the fact that Luke wasn’t able to go to his week-long Bible Camp in mid-July. This was such a huge step for him last year, and I was so excited for him to go again… but when we had to cancel it was a setback for me. I was pretty sick and tired of Luke getting hit again and again with a new health issue. His vocal tics also transferred to a chronic head shake that was almost more socially unacceptable than the vocal “cough/throat clear” noise he used to make. Why this kid? He’s been through MORE than enough. It’s maddening sometimes (flashback to tick-bite/lyme disease; and the necrotizing spider bite by yellow sac spider).

So the fall school year began and Joel INSISTED that Luke be in his class, Grade 6 with him and they’ve enjoyed a semester together. We love when Joel comes home with stories of how Luke was in class or other fun stories all relaying inclusiveness! Over 3 months, Luke went from playing outside the gaga ball pit (look it up, I really can’t explain it), to being inside and acting as an “obstacle” (the news that Luke is IN the pit spread throughout the school), to becoming the ref (he makes the call when someone’s out/touched by the ball and is always correct). So amazing to hear.

He was part of a Project Based Learning activity where they made tie dye tshirts and socks and sold them for a $180 profit (which went to the Food Bank). He is in a middle school Explore Foods class where they cook all kinds of great meals. He is part of a Life Skills group where they go on field trips and cook and learn to take the bus, and more. He participates in the autism Social Butterflies program where they work on his academic skills, reading, writing, money, and math. While he does like numbers, everything is still a struggle for him, but we are seeing some connections being made. Just recently he’s become interested in spelling words. This is truly miraculous! We started last week spelling a word of the day orally, repeating it a few times, and then at his leisure, he writes it down in a booklet. It’s been so cool to see this, as my pray for the year has been for him to learn to read. I am “beyond words” knowing he’s just getting started! God is good, and this is the best way to end this year that had more than it’s share of sadness.

A lot of this new awakening to words I attribute to our local neurotherapist, Mrs. Kim. She’s been able to not only produce a new brainwave map of Luke’s brain, she’s been able to explain it so I understand it. Basically Luke’s anxiety is HUGE, which we knew, but it was never debilitating (or so we thought) as he always adjusted well and seemed “chill”. The map, interestingly enough, showed that Luke also has an excess of Delta waves which is what we have when we’re sleeping and not thinking much. The possible theory is that Luke’s brain is smart enough to increase his Delta to the extreme in order to cope with the extreme Beta waves (anxiety). This also informs us that we need to help Luke decrease his anxiety naturally (Mrs. Kim works with him weekly on this, as well as reading and writing skills). She was thrilled the other day when he learned (on his own without prompting/help) how breathing deeply decreased his Beta waves. This is exciting stuff. We might even go so far as to say that his extreme anxiety (combined with his perfectionism) may be what deters his speech! He’s afraid to say the wrong thing, the wrong way (part of this was when we realized he talks a lot in full sentences in his imaginative world with his stuffies, where he’s in control, safe at home, with no anxieties). Super interesting, bleeding edge stuff… that’s non invasive and Mrs. Kim is teaching Luke self-regulating strategies in order for him to manipulate (increase/decrease) his own brainwaves. Wowza. I love this sh*t. And he loves going to see her, and works super hard for the 70 minutes he’s with her.

Another year long commitment we made was to a chiropractor. Dr. Rob has been working with Luke since January, from 2x a week, to recently every other week. We learned from Dr. Rob that Luke couldn’t turn his neck to the left all the way. He had also a slight potential for scoliosis in one area of his back that I wanted a professional to keep an eye on it. So as Luke shot up (he's super tall now!), his back was being constantly aligned. By the end of the year, Luke’s neck is great, and he went from not feeling comfortable leaning or lying back to being able to relax (specifically he wouldn’t lie back in the tub, but he does now!).

Along with this, we have found an awesome physiotherapist! Tyler is so great with 14 year old Luke, not giving in to his excuses, and pushing him super hard to strengthen his core and to figure out his body’s skills, specially hand strength. Last time I checked in with them, Tyler had Luke balancing on his knees on a big ball, holding both his hands… and making him let go of one hand and high five high up in the air. He constantly works the stomach muscle in fun and playful ways, and Tyler’s usually exhausted at the end of the weekly half hour sessions too! Luke really enjoys this time there.

We also found a support person for Luke to take him to physio, and work on social skills. We’re pretty happy with the services this young man provides, especially loving the fact that he himself is on the spectrum and has succeeded in life by being a help to kids with autism (and he’s getting married!). Such hope. He also “gets” Luke and notices things that we don’t which is SO interesting. They spend a couple hours together every Friday afternoon.

His head shake tics disappeared many months after they mysteriously appeared. I’m not a scientist who tracks everything (did his diet change? did his stress levels go down? is puberty affecting them?), but I’m glad they’re gone. I did just notice a recent eye shake return, so as always, they’re never really really gone. It kind of sucks. I really wish I knew what caused them and how to stop them. At one point I talked to our doctor and she had no solution… although we discovered they don’t seem to bother Luke at all, so that’s a good thing. Someone had been concerned that they were seizures, but the doctor witnessed the tics and assured me they were not. Thank you God… Dave and I spent a few days in deep worry that the seizures had returned. Not a fun feeling. I did request an appointment with our pediatrician to talk about options for tourettes. I still haven’t received a call for the appointment, six months later. I also tried to connect with a reliable, intelligent woman who gives cbd oil for her son’s anxiety and seizures but we kept missing each other and around that time the tics stopped on their own. Who knows why? The guessing game gets super old fast, and I’m not getting any younger either, ugh. I’m a tired warrior, lol.

He’s slowly learning to swim with the help of the Canucks Autism Network. They are patient and kind. Luke is trepid and clingy, and still does not have enough power in his arms to swim independently. They will continue to work with him in January for another 8 weeks of lessons. The physiotherapist continues to work on his upper body strength.

January will also be the second set of Adapted Ski lessons at Sun Peaks Resort. Our friend, Jo Berry and our previous physiotherapists, Cathie Levin, are his coaches. He is so scared to ski, but they are so gentle and kind with him. After 5 weeks they started out super basic and by the end he was skiing gently down the bunny hill with support. Despite his anxieties, he’s always good to go and really tries. He’s a good student, just has the huge fear-of-falling obstacle to overcome. We’ll see how he does this upcoming ski season. It was weird to “drop him off” for 2 hours; at first I didn’t know what to do with myself, but towards the end I was loving the snowshoe trails, while Dave and Joel skied.

One beautiful thing is he has started kayaking… he’d only go out so far (with one of us), but we keep pushing him a bit further. We sometimes take a tea along and just float. It’s pretty awesome, even if he doesn’t last too long. Can’t wait for next summer.

We also saw an artistic side. He created some paintings this summer, abstract, colour blocks. Very basic, yes, but it’s a pretty big deal to us. He chose some pretty interesting colour combinations and was very focused while painting. I bought him his own set of paints for Christmas, so hoping he’ll be encouraged to do more. He does hate getting paint on him/his hands, lol.

He’s been included at youth and even went to a friend’s house with Joel and a couple other boys the other day. Pretty big deal for us. The mom adores Luke and was thrilled to hang out with him. So fun for him, and us, to have other people watch out for Luke and get to know him better. Youth is great too, as he goes with Joel and friends and plays the games or does whatever. He even went to Kamloops City Wide, and huge Youth gathering with bouncy castles, noise, car smashing (take turns taking a hammer to a car), pizza and pop, and worship bands performing. We picked him up a bit earlier than Joel but he was near the front of the stage listening to the music with his buds. Too fun. The only issue was everyone felt sorry for him because he couldn’t have the pizza (he’s gluten-free) so according to Joel all kinds of different people bought him a pop. Joel said Luke had 5 that night; I don’t want to believe it, ugh. Luke loves pop, BUT doesn’t have it very often at all ("sugar is poison" is my mantra to them all the time, lol). It didn’t seem to cause any problems as he slept well that night. The whole event was another first for us, and we were nervous. But the beauty part was two of youth pastors know about him and kept an eye on him. I even got a thumbs up text from one of them. See, Luke is surrounded by love, yay.

Joel loves Luke, so much that he insisted on Luke being in his class this year. At one point he was a little sad because Luke was pulled from class too much. Joel did, however, have his first taste of negativity when a couple boys on his soccer team started making fun of autistic people. Proudly he stood up to them and told them not to do that, but one of them still did the next week. It made Joel very sad. This is reality… sucky, but true. Joel seems to know Luke the best and truly believes there’s so much more to Luke than people realize (so much more inside!). He wrote and spoke about the “treasure that is Luke” in chapel one day at school and talked about how Luke doesn’t play video games but uses his imagination when playing with stuffies and action figures [which is also a healthy way that Luke vents his teen frustrations]. It was sweet and simply beautiful. He keeps an eye out for Luke when he can, but we do our best not to make him feel overly responsible. Luke is, by nature, quite responsible and really good at following the rules, so it’s not hard to be with him. He’s the quiet one, watching from the sidelines, and self-entertaining or just wants to be part of the group without bothering people. He’s fitting in, as far as I know. As parents of eleven and fourteen year old boys we’re realizing, as they are away from us more, that one never really knows what goes on; so we assume all is okay. Perhaps it’s more difficult for both of them, but so far it’s all good. We try to keep the lines of communication open, but as they get older, they withhold more and more, I know. We will navigate the teen years cautiously, and pray that they both continue to thrive. Right now, life is good and they are both easy to be around and we love that they are kind and happy. What more can we ask?

We’re looking forward to a great New Year!