June 26

Summer!

Looking back on the school year, I am happy to say Luke's been continuing to thrive and progress. It is always still such a journey, but what I am realizing more than ever is that Luke is Luke... autism is something about him, but it's not who he is. I'm starting to understand why some parents say "I wouldn't change him or our journey if I could." I used to think people who said this were lying, but I'm now at a place where I agree. Despite everything (and yes, I would change that he didn't have to go through all the medical procedures, needles and seizures!), he is such a cool kid. None of the global developmental delay, epilepsy, autism, tourettes, define him. He was cool from when he was a baby... chill and sweet, so cute and so helpless... and the true thing that amazes me most is his ability to "go with the flow". Yes, there were times he was scared and didn't want to try new things, but for the most part, he did. He allowed me without any kicking and screaming to go into the oxygen submarine in Richmond, he allowed me to put headphones on him for periods of time at the auditory therapy clinic in Coquitlam, he allowed me to take him to naturopaths and homeopaths and physiotherapists and vision therapists. I love and am overwhelmed by his trust in me. I pray that despite his childhood of therapists, that he also enjoyed a childhood. This is why we've always had a trailer on a lake for 13 years now, where he could just be a kid: touch frogs, swim, run, play, toboggan. Thirteen years. Oh my. This is why I'm waxing nostalgic... because my baby will be a teenager in July! I feel like we're stepping into the 'next phase' of young manhood (he wears deodorant now!!). I also want to mention that the best thing I ever did for myself was admit that I needed to talk to someone. My counsellor gave me the best advice ever... to let go, stop being his therapist and let other people step in and help. I was told it was okay to just be his mom. And I've enjoyed watching miraculously as person after person filled Luke's life with more love and support and guidance. From the best EAs to the team at Social Butterflies, to the Ministry Support people, to the new therapists and physiotherapists... and even the KCS community as a whole. It's been nice to step back and see that he didn't fall without me, but was immediately lifted up by many amazing people. The fact that Luke is so well-loved at KCS, and has a cohort of kids in his class that embrace him and help him in their little Grade 3 community makes my heart sing. The realization that Luke is happy and loves school and is progressing has brought a peace to our home. Yes, there are still "bad days", but we all have them. He is growing so tall, and many have mentioned that there's a "maturity" about him. It's very cool to watch him evolve as a tween, despite the delay. It's a bit hard to explain because he's unprecendented and unique, but despite everything, he's still just a boy heading into a teenager world.

Luke's progress: • Printing letters is getting better all the time. • He is learning in Social Butterflies about Math, Money, and does a Reading program on the computer. • Reading is coming along slowly... I've been told he's "on the brink" of connecting so many things from printing to math to reading to money matters. • He has a weekly program where they grocery shop and the next day they cook. • He has vision therapy weekly, and has improved on so many levels there. • He's been working with a feldekrais / movement therapist and, as a result, is discovering the many things his body can do... walking through development stages that he missed as a baby / toddler. • He is knee-deep in imaginative play! This is phenomenal... hearing him "talk' for his stuffed animals as he plays with them is music to my ears; quite often we let him "play" at home, however he wants... we are no longer a home of therapy and homework and exercises, but a safe place for Luke to be Luke and we give him tons of downtime so he can process his day in his own time. • He eats! Wowza... everytime he sees me he says "I'm hungry"... can I have a junky snack? (as opposed to a healthy snack which he willingly alternates). • He is engaging people in conversations, little by little. • He is telling me about his dreams; they were always "nightmares about the vaccuum cleaner and the furnace", but he's articulated different visuals... people chasing him, etc. amd this is SO cool, and reaffirms to me that so much is going in, but he just can't get it out (which we constantly work at his speech/brain connection via neurotherapy and homeopathy). • He LOVES music! Remember the Shuffle we bought him for his birthday last year? Well, I'm pretty sure he knows all the words because he sings them in his Lukey voice... the words don't always come out right, but close enough, lol! It's literally music to my ears :). • He wants to be and play with other kids, but is completely content on his own. • He is anxious when families (siblings) fight. He wants everyone to get along and love eachother... trying to comprehend that even though we get angry at eachother, family always love eachother. • He wants to learn to play soccer, and is getting better at foot-handling the ball. • He loves cats (I know right?!), thinks it's funny to ask us for a pet cat when he knows it won't happen (he's really allergic and we are always gone from home... whether visiting family or at our trailer). • He has supersonic sight and hearing, all a part of the oversensitivity of autism... he sees me far across a field, and can listen to his shuffle when it's super-soft / quiet... I can barely hear it. • He wants an alarm clock for his birthday (and we're taking him to Playland!!)