January 20

Been a bit lousy about keeping up the blog, but no news is good news I suppose. It's been very interesting taking what I'm now calling a "vacation from autism". The KCS school team has been unbelievable and while we had a few minor behavioural bumps at the beginning (and still on the rare occasion), Luke has adjusted to learning in his special room with one-on-one teaching. We're grateful that he can receive such personal attention. There are no concerns at all, and we've had only 1 phone call regarding Luke's behaviour and that was only to follow through on the threat of "calling mom"... (Luke had realized they were using it as a threat and would never call, so they had to... to make the point; and they haven't had to call since).

Many things have happened over the past few months, and it's hard to remember some, but it's easiest for me to put it in bullet form rather than write the whole story (and not necessarily in chronological order, sorry):

• Swingle's sessions have made an incredible impact on Luke's comprehension, behaviour and speech. We plan to do more this summer. Highly recommend it.
• Our wonderful teenager at the church is amazing and even babysits on occasion. We are so thrilled with her. The church situation has settled into a wonderful "normal" routine with Dave and I enjoying the sermon together as she monitors the boys (who are not a lot of work at all).
• Deep sadness to be informed that Dr. Craig Wagstaff, our naturopathic guru, passed away suddenly in late September. I grieve for him... especially his brilliance. We have since met with his wife who has taken over the practice. She is a strong, smart woman and I admire her courage. The dark field technology that we had been working on has been changed to a new (bit less exacting) testing system which does not involve "pricking the finger". Luke was quite anxious meeting with Dr. Karin Wagstaff and it took a bit of time for her to win him over. She promised "no pricks" and he received some toy dinosaurs at the end of the session as a good faith gesture.
• Ms. M, another one of our amazing babysitters (since both boys were born) had completed her ECE program/studies and was hired by KCS to work with Luke!! Can you believe that? I heard from her mom that when she got her "dream job" and knew she was going to be working with Luke she cried tears of joy for the first time in her life. She loves him and Joel that much (she works in Joel's kindergarten classroom too).
• Luke's speech is beginning to astound as it improves. I originally thought that I would use the rest of this year's funding towards speech therapy, but have decided it will be more effective spent on Dr. Swingle. I met with our pediatrician (been a few years) to see what other services were available, and while she had nothing to offer (and was quick to tell me that I knew more about autism than she did)... she did help me decide not to put money to speech therapy. Luke's speech is coming along nicely, and we have some speech at the Chris Rose Centre for Autism and will now (starting February 1) have some speech from the School District. I am okay with that for now.
• Dr. Chapple (pediatrician) was pleased to have a short conversation with Luke (so exciting!) as she had never heard his sweet voice before... she has been with us since Luke's birth as well.
• Luke was very sick in early January with strep throat and fever. It took more than a week (and antibiotics) for him to bounce back. These step backs are still scary and disappointing, but once he's recovered, watch out. His talking and playing, attitude and sense of humour are astounding us right now.
• Luke loves the show "Kipper"... a simple calm kid's cartoon on Netflix. He's watched all the episodes over and over and asks for specific favourites. Nothing makes me happier then to hear him laugh hysterically at Kipper and friend's antics. The fact that he "gets" the jokes and humour is one of the biggest signs that Luke will only continue to improve... A sense of humour (according to Dr. Swingle) is a sign of hope.
• Luke is a madman on the toboggan hills. His physical confidence has increased tremendously; which in turn is improving his gross and fine motor skills. He actually has stamina.
• Luke is becoming more assertive; especially with Joel (pushing back and not caving to Joel's demands). It's good to see.
• Luke can still get caught "in a loop"... sometimes, like each one of us, Luke needs "private time"... and to release any tension he says he "needs some time in the shower"... which means he hides in my shower (no water is ever turned on) and he'll toss his stuffies outside of the shower and vice versa. He just needs to "throw" things sometimes and this is one of the things he does to cope. We have to time it sometimes as he can get caught up in it a little too much. I used to worry a bit, but it's really not that unusual a ritual. I talked to a young man who has recovered from autism (he's 19 and living with buddies and has his own great job). He said he used to hide under the blankets in his room for hours after school just to process the school day.
• Once in a while Luke needs to know "what comes after" which was quite the stim a few months ago; but it has lessened to only once a week, and only when he's tired or obviously not himself.
• We still see Mrs. Ross and she gives us more and more exercises to work with Luke. I pass them on to Mrs. S. at the Christian School and she incorporates them. They are both God-sends.
• At night, Luke sometimes has a hard time falling asleep. He says "I'm scared" either of the furnace (it's extra-loud to him), or of the vacuum cleaner, or perhaps he had a nightmare (hard to tell when he can't fully express himself yet). We can often hear him running around and getting worked up as he tries to calm down for the night. For quite a while he was waking in the night and crawling into bed with us because "he's scared"... so for now (for a short term) he sleeps in our bed right away and I sleep in the guestroom so everyone can get a good night sleep. It's temporary (lol). Sometimes we make sacrifices so Luke can get a really good night's sleep; but it's worth it. Having him voice his feelings is a very good thing; and he is just experiencing all the "I'm scared" moments that Joel went through as a 3-4 year old.
• Luke is an ice cream lover... and will finish his entire dinner plate if he knows he can have a bowl of ice cream for dessert (limited to once or twice a week). One time I caught him licking the bowl, just as my dad would do and we laughed at just one more similarity between Luke and my father.
• Luke LOVES to listen to music in the car. It's always fun to hear Luke singing parts of songs spontaneously at times throughout the week. It makes us smile.
• Because Luke has a tough time speaking he often gets stuck saying "mom" "mom" "mom" and never quite formulating the question or comment. My usual, automatic answer is "Luke, use your words... try to speak!"... as it can sometimes be annoying (sorry, I'm human). One day after one such situation and we were in the office together a few hours later... Luke was "playing" by himself and I heard him say "I AM TRYING TO SPEAK!!!!" Lol... I know you are honey, I'm sorry.
• Ms. S. still visits us on Friday afternoons and continues Luke's games (activities) and integrative play between the two boys. She's a true friend of our family and we always look forward to her visit. Sometimes she brings awesome "science experiments" or craft ideas which are fun.
• After a lot of paperwork we now have an RDSP in place for Luke for when he's 19 (the services for 19+ with disabilities are not as great as for those under 19)... there should be a sizeable chunk of change in that fund for him! It's a no-brainer commitment as what we put in the government doubles that and adds it to the fund. Another reason to thank you Mr. Harper.
• I noticed that opening presents and Christmas are a bit overwhelming for Luke... however, I also realized that while he seems uninterested in all the gifts when he opens them... one by one he finds them and plays with them and shows a real interest in them... all in Luke's time.
• One of the best improvements is Luke's smile. Sometime when he looks at you and you smile at him... the huge smile back and the light in his eyes melts my heart. I love that he's expressing himself and we're getting "feedback" from him in regards to feelings and love. One night late December he was quietly watching me from a few feet away. Suddenly he said "I love you mommy; I want to give you a hug and a kiss"... came over and hugged and kissed me... that made all the crap from the first half of 2012 completely disappear.
• Luke has a lot of anxiety; but he is becoming more and more brave. I tell him often how proud I am.
• Luke's been dressing himself which, for the most part, is awesome... but he can get a little obsessed with finding "just the right sock" (can take a loooong time to find it). Sometimes it's two different socks, but we don't care and more often than not one or both are inside out (the "strings" bug him). He also has a favourite pair of pants that he's pretty much wearing every day. We made him wear some different ones on Saturday as we had to wash his favs... and at night he went to put his pajamas on and came upstairs in his fav jeans again, walked up to me and smiled and said "Look" (pointed to his pants). He thought he was sooooo funny. And he was. Love the joking, Luke. LOVE it. Hahahaha.
• I took the boys to A&W for breakfast one morning and before we go anywhere special we go through "the rules" (not so much anymore but when they were little). Basically: no running in A&W, no lying on the floor in A&W, sit on your seat in A&W, no screaming in A&W... the rules are "old" so I asked them to make up their own new rules... Joel was clever and he said "No going in the little orange car in A&W" (there's an orange car suspended from the ceiling on top of a little table/counter and Joel's threatened to climb up and into it a couple times). When it was my turn I said "No peeing or pooing in your pants in A&W" (they're all about the poo word and the word butt, etc). Well, Luke had a hissy-fit of giggles for the rest of the breakfast. He would repeat the rule, and start giggling all over again. It was hilarious.

While things seem smooth, there are many weeks where Luke seems "off" or not "himself". It is tough to hang in there sometimes and I will admit to having doubts and deep sadness; but when he's up... he's SO up and I think that this kid is so amazingly typical and he'll be fine. The roller-coaster of emotions can be very exhausting. Joel, my joy, keeps me grounded with his beautiful typical life, problems, jokes, hugs, and accomplishments on a day-to-day basis. And I LOVE how Luke is Luke and he tries, oh how he tries! This is our life, and it is good... even when it's a little bit tough. We are so blessed.

One of the nice things about this "vacation" has been the support. I spoke to Mrs. S. about my personal feelings of guilt over stepping out of Luke's therapies and daily education. She assured me that I have done enough and deserve a break, and that Luke is in good hands. One of my biggest concerns is that some of the strides we made in reading last summer have back-slid... but Mrs. S. has convinced me that Luke WILL learn to read... it's just in Luke's time. He has progressed to the point of keeping up with the Grade 2 art requirements, keeping up with the kindergarten Gym class, and is exposed to exerciss and worksheets/handouts from kindergarten through Grade 2 whichever are applicable to Luke's capabilities. They are so accommodating at the school and are really meeting Luke's very specific educational needs. I am ecstatic. The one joyful decision was to realize that the Chris Rose Centre is where they address Luke's autism, but the Kamloops Christian School is where they address Luke's academics. So they are teaching him!!! For example they are doing a session on polar bears and are making tactile samples of the layers of the bear's skin; watching short YouTube clips on polar bears; reading books about them; and doing art projects that involve polar bears and igloo puzzles (cutting / colouring / gluing). And that's just one small part of the intensive curriculum. They are keeping him very busy all day long and it's important to realize that when he gets home he's mentally exhausted. So it is now my job to just be a mom... we bake when they get home, or watch tv or do errands, etc. It's very "normal" at home. I don't even do any more research on the internet (aside from the updates of info from the Autism Parent's Support Group. I have truly taken a break. The only therapies we continue are homeopathy with Dr. Karin Wagstaff, and neurotherapy/biofeedback with Dr. Swingle.

Joel is realizing Luke is different, but it still has not fazed him. He was quite upset that he couldn't attend the Chris Rose Centre for Autism with Luke, just for one day, because it wasn't fair that Luke knew what Joel did at KCS, but Joel didn't know what Luke does at Chris Rose. He also joined me to watch Luke's Christmas concert at Chris Rose and was shocked that the "autism Santa" had a gift for him, even though he didn't have autism. Sometimes he pretends he has autism and acts like Luke for a bit, not in a mean way, but in a family fun way (for example: he'll open the door all the way and put the stopper down as Luke does every time we come in the house from the garage).

The other neat thing about Joel is that he is reading. And since he's in grade 1 in the morning he's learning to spell and taking spelling tests. He says he loves "the work". In the afternoon he gets to play with his "kindie" friends so it's the best of both worlds for him. He's still a little emotionally / relationally naive, but he's bright and savvy and LOVES to joke and make us laugh. He was so proud one day out of the bath that he finally figured out how to fart on command.... yep, did I mention we were so proud of you Joel? Proud.

He's an iPad guru and often teaches us what's going on, or how to work it. I can already sense he has a more analytical mind than me and has mastered any "physics-like" games like "Where's My Water?" and "Flow" and "Cow Balloon". He has a reading program on the computer "Raz-Kids.com" and he's on Level E. And in the off-hours he's plugged into the Wii... although it's usually Wii Fit or Wii Sports to keep him somewhat active. He is not always allowed to be "plugged-in". There are time limits, and there are other activities like colouring, painting, dress-up (he recently received a ninja outfit from a buddy and didn't take it off for days). He has a great imagination and it's fun to hear him pretend-play when he finally chooses to play with his cars, or "treasures" in his secret drawer, or his train track, or the duplo blocks.

On a personal note: When Luke was younger I was so optimistic and positive about his eventual recovery. He was our first-born, and I did not have any gauge as to what he should be doing or how he should be improving. Now that I've watched Joel and I see how much further he's developed (and faster) than Luke I am a little saddened by Luke's delays. Not discouraged, but realistic about his obstacles. Having said that, I still believe in recovery... although many will say I'm crazy. I thought it would come sooner, but the journey is a lot longer than I thought. And I know now that it's far from over. But anyone who has seen and really knows Luke is witness to the fact that this kid HAS come further and faster than most kids with autism. His improvements have been monumental and just as phenomenal as Joel's. They are both amazing. We're all in a very good place right now, thank you God.