June 20

Can't believe it's come to entries only twice a year! Wow... hope I remember all that should be recorded.

Luke, right now, is amazing (yeah, yeah, he's always amazing!)... he's at the top of his game. This past week I'm catching him singing songs and reciting rhymes like crazy, which is so awesome! Songs like "Bingo was his name-o", "The Old Man is Snoring" "Do Lord, o Do Lord" and bits and pieces from the Curious George music CD and the Toopy & Binoo CD (both his favourites). We've discovered moreso then ever that Luke loves music. Sometimes when it's quiet and you don't know where he is (uh-oh? too quiet?) we actually find him sitting at his little table in his bedroom listening to music. The CD player was a Christmas gift from us (my friend A. had one in her son's room and gave me the idea :). Every night now, the boys take turns choosing a CD. It's a great soothing mechanism at night and Joel has a tendency to pick these beautiful Christian kid songs so that makes me happy.

Other updates in bullet form again, and once again not necessarily in chronological order:

• Swingle sessions over Spring Break were great (Luke was so well-behaved) BUT the "fallout" afterwards was so discouraging. We met another family from Kamloops there with their child and it was so nice to have someone to talk to about this biofeedback / neurotherapy! We both had huge concerns about how much our children regressed and how difficult the many, many weeks afterwards were. In the end, it took Luke up to 6 weeks (as opposed to 3 weeks last August) to "come around". But he eventually did, and is further ahead because of Swingle, regardless of the scary stressful backslide. I spoke to the other mom about her thoughts and if she'd do more neurotherapy and in the end, we both agreed that the longterm results are so worth it. So I rebooked for August (6 sessions) and am in the process of confirming a "remote" unit so that we can do the sessions here at home (the technicians in Vancouver take over our computer and control the games while I paste the nodes in the right places on his head). We will be doing this treatment every other Friday in the fall.
• Luke will only be going to Chris Rose one day a week in the fall. I will be keeping him home on Fridays and working with him and/or having people come in and work one-on-one with him. Because he's so teachable right now, and because of my "one year vacation from autism) I'm eager to reconnect with him and help him read and learn and grow, and focus on his strengths. I'm very excited and have a whole slew of people lined up to help me including my artist neighbour, a lifeskills/yoga instructor, swim instructors, and other homeschool parents. I will have to get organized!
• One other awesome plan is that on Tuesdays starting in September, a "Dutch Oma" will be attempting to teach Luke the piano. She has had autistic students before, so she has some experience. We will see if it works out. I'm quite excited about this, I've heard nothing but awesome things about this woman.
• We've decided to stop the horseback riding lessons. Luke, while obedient and keen, is not a huge horse-lover. I've asked him numerous times if he's interested in taking the lessons again and he always says "no", so I have to trust that he means it.
• I met a friend who has a son with Autism that is 15 and it was hopeful to see how successful he is. We talked and bonded and they gave me a fortune's worth of supplies, therapies, books, games and ideas that I've shared with the Christian school. Some even applies to the "siblings" so we can start conversations with Joel about his feelings. Special thanks to these folks for their compassion and listening ear!
• Today is the boys' last day of school and Luke has been excited to have it all end and start summer holidays. We have a long list of fun things planned for July and August most of which include staying at the trailer at Mile High. I love just letting them run around, play, get wet and enjoy nature... just be boys! Looking forward to quality time. Even daddy gets some decent holidays this summer!
• Luke and Joel are both quite independent now. Aside from a nudge or two, they can both get dressed, brush teeth, wipe butts, and wash hands/faces. Okay, once in while they need more than a nudge, but it's major progress!
• Out of the blue, the boys (together) decided they wanted to take showers now instead of baths. I was pleasantly suprised as I assumed we'd be on bath duty for at least a couple more years. They hopped in together and had a hoot. After a couple sessions with daddy on how to clean and wash themselves, they've been taking showers whenever they want, any night. I cannot believe how awesome it is!
• We met with Dr. Bratt in Kelowna (hadn't seen her in quite a while). It was nice to catch up with her. She redid the "supplement" prescription; took some away, replaced some, brought some back. Our present goal was to wean him off his anti-seizure medications, so she provided the supplements necessary to help him with this process. She's still as awesome as ever.
• On June 5 Luke had his EEG at Children's Hospital and I was once again surprised by his independence. Usually I climb into the bed with him and sing or help him relax off to sleep; but not this time. He hopped on by himself, had no problems with the electrodes pasted on his head and in proper time, fell fast asleep all by himself. I was so proud and so impressed with him. The most amazing result of the EEG is that there is no "epileptiform activity" and the neurologist finally recommended that we wean him off his medication. Thank you God! We began the weaning that night and have not seen anything adverse since. He should be completely off both anti-seizure medications by October. Please pray the seizures don't return!!!
• Luke also went to the dentist recently and he did whatever was asked of him. He even let the dentist poke his teeth and count them (with the silver pokey thing, which Luke was terrifed of last time!). Even the hygienist was very pleased with how much she got done... every time a little more. He chose "mint" flavoured polish and said "It's delicious". Joel is always great at the dentist too (he goes first to show Luke that it's no big deal). Unfortunately, Joel has a cavity, so we've booked him for a filling complete with laughing gas to make the experience less stressful :)
• Luke also went to the developmental opthamologist in Walnut Grove, Langley and this time he does need glasses. His assistant at KCS and I were both concerned with a digression in his reading skills and he actually began taking her glasses and putting them on. So he needs glasses (minimal prescription) for bookwork only, having focusing issues within 12-18 inches from this eyes. We pray this will help correct his fuzziness and that he'll pick up on the reading again in the fall. We went to pick out glasses and Luke was having a blast choosing... although in the end he liked the "purple ones with the Hello Kitty logo on them"... haha. I'm seeing if they have them in a boy theme. I'll have to post photos of him in glasses when we get them... I'm going for the stylish black frames :).
• After spring break (and Swingle) the Special Needs Coordinator at the school mentioned that she felt the "bubble" around Luke's head had been burst. This is her analogy for the fact that Luke looked around at people and things than ever before. Especially socially. He joins Joel's group of friends for lunch every day and started putting his shoes on / off over by that group of boys. Joel has been awesomely inconclusive (as have all the boys), which is nice to witness their kindness. Sometimes Joel will play with Luke at recess or lunch outside; he has a true soft spot for his brother. Not at home, of course... they fight and wrestle (especially on the trampoline). Luke can be a bit passive, and Joel can sometimes take advantage of that (who wouldn't?) but Luke has begun to stand up for himself lately which is good to see.
• Luke is biking more and more and loving it. I hope this summer he has an easier time of maneouvering around on the gravel and hills at Mile High. He won't get better unless he keeps trying :). One of our favourite things to do as a family (besides geo-cache) is to bike (we walk/run) around McArthur Park. Daddy took the boys on Father's Day and said he had a hard time keeping up with them... had to run to catch up even! Joel is a hotshot of course; Luke is cautious, but is getting more and more daring!
• We spent a weekend at a cabin up North with friends and daddy dislocated his shoulder while riding a dirtbike (hurtbike!). We had to leave Luke and Joel with "strangers" (people we see once a year)... they all took shifts with Luke and as you can imagine, Luke was not himself. Not only was he in a strange place with strange people, mom and dad disappeared for 4.5 hours and daddy was hurt. Fortunately, everyone managed to handle him and keep him somewhat appeased (he threw stuffies, clothes, pillows, ayiyiyi). Anyways, in the end it was all okay and our friends had a little taste of our life. I often talk about how our family of four lives in a "cocoon", and it's so true. The past year we've begun to emerge a bit and let others into our lives, but it hasn't been easy. Fortunately, Luke's behaviours are not often that extreme or unusual, but we've been in this for so long sometimes we don't know how or if it looks strange to others.
• Luke has issues still with a game he calls "Stuffy Scramble" which is innocent and typical enough (bringing all the stuffies in one big pile from room-to-room). We're not too concerned; the only issue we have with it is that he gets a little consumed by it and sometimes has a tough time breaking free from the game. A little distraction and he's fine.

JOEL: Constantly amazes and brings joy. His questions and humour keep us smiling inside and out. Whether he's trying to make us laugh, or trying to "trick" us, he keeps us energized. While we were gone to the hospital for daddy's arm, Joel was not around much and easily distracted by other friends for the whole afternoon. While he's somewhat shy, he loves to just tag along and watch or hang out with other kids and he's absolutely thrilled when he's included and made to feel like part of the gang. He played baseball for the first time ever (just got a new glove for his birthday) and was not only great at it, he was SO serious about the game and wanted to learn more about it. His stance and his base-running so fun to watch. I am so glad that he is stepping out of his shy world more and more and that we often find he's surrounded by great kids that are considerate and inclusive. He warms my heart daily.

............

There are good days and bad days, up days and down days (sometimes really down days)... this is our life, and Luke and Joel are such blessings.

Sometimes I think when I talk of Luke's recovery of autism, maybe it's honestly more about my recovery of finding out that he has autism.

I like to believe both.