A new school year with two new schools! Luke is attending the Kamloops Christian School Monday, Tuesday and Thursday; and the Chris Rose Centre for Autism on Wednesdays and Fridays. No offence to KCS, but Luke loves Chris Rose... one day he got out of the car and said "This is my school." I know why he likes it... he gets one-on-one attention. They have 5 blocks of time during the day which include: speech therapy, occupational therapy, physical therapy, swimming, life skills, yoga, and circle time. Sounds like fun to me. At KCS he is being unbelievably difficult, exhibiting behaviours that I had prayed were long gone: screaming in circle time, running from the classroom, not sitting in his desk, running out of the school into the parking lot!, etc. It's been absolutely heart-breaking for me which is why the delay in updating... I've been quite sad about the situation. I gave a list of strategies that I've learned over the years; and I also pushed for an early IEP with everyone that knows Luke. Together we communicated ideas about how to get him to behave; and talked at length about solutions. It has been incredibly stressful. The interesting thing is that at the IEP meeting Luke sat next to me fairly quietly for the majority of the 45 minute meeting; and also said his memorized bible verse with a tiny bit of prompting to the jaw-dropping awe of his teacher and assistant. They were astounded at his capabilities and especially the fact that he could sit quiet and well-behaved for such a long period of time. I, on the other hand, was mortified that he was not sitting still or behaving or being quiet in the classroom. Ayiyyiyiyi. It makes me insane to go through this every new year, every new school, every new assistant... and I am running out of answers, turning to tears and anger. I am so tired of this. At home, for the most part, he is "normal"... answers questions, sits at the table, plays, gets crazy with his brother, watches tv... there is very little left of "autism" in our house. Out "there" it becomes sadly apparent that he continues to push buttons and boundaries in order to find the structure and rules in any new environment. I get that. I do. It's scary and strange and different. But that doesn't mean I'm not tired of it. I am so tired of it. At this point, I will continue to pray, pray, pray that things will settle down and Luke will settle in to a new routine. My biggest gratitude is that he is in a Grade 1-12 school so once things are figured out, I hope to never have to transition him to a new school until university... which is too far away to worry about now.

OK, it's not all negative. Thanks for letting me vent. His new assistant is awesome. She was so encouraged because last Thursday he had an "AWESOME" day and even received a certificate from the teacher for "Good Listening"... which I thought was a turning point, but the next two days he was back to his old tricks. Sigh. At least they are now aware of his capabilities, and are doing their best to find out how to help Luke adjust and learn. The coordinator assured me not to feel guilty or sad... and even said "He's one of our children now, we'll figure it out". Which just made me cry more since I am so blessed with this new team of women that are helping me on this overwhelming journey. It has, obviously, been a little hard to let go of him (he's in school 5 days a week, 8:30-2:30 - no more lunches with me!). I'm trying to let go and "let God". I believe in my heart that it will only get better and we're in a "valley".... I will try to be hopeful.

The other positive is that he does awesome during Lunch and Recess, lol. He is even interacting with the other children and climbing the play equipment outside quite daringly. There are quadruplets in his class and the one girl (3 others are boys) has taken to caring for Luke, which is sweet. Luke still needs prompting to respond when classmate says hi. The good news is the teacher and assistant both believe he is blessed to be in a class of very sweet and tolerant children and this cohort will be considerately accepting of Luke.

Ms. S., our BI who has worked with Luke for the last few years, goes to KCS on Mondays for the last hour of class and demonstrates Luke's capabilities and how she gets him to comply and behave. I think it's important for the assistant to know what he is capable of, otherwise they underestimate his abilities and end up "babying" him since he can play the "helpless" card so well (with his sly smile and cute face). I am too well aware of the fact that because Luke cannot fully conversate, he can be viewed as much more delayed than he is. He is actually quite smart that way... if you're going to do it for him, he'll let you. He's looking for the easiest way to get through the day, and get out of doing the things that he finds difficult. On Mondays, after school, Ms. S. takes him here to our home and continues ABA for a couple hours including a lot of learning through play, and a reading program on the computer. He is starting to learn to read which is exciting.

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On another note, Luke began Horseback Riding Therapy. He is totally aloof about this. He has 6 sessions for half an hour on Wednesdays after school. He is pretty amazing on the horse (see the photo above) despite his anxiety. One woman leads the horse, the other gets him to learn the commands "Whoa" and "Walk on" and find "Mr. Potato Head body parts" all around the riding ring to bring back and put him together. He does well at this.... a little nervous giggling, especially while "trotting". I do not see much passion for it though, and am not totally versed in the benefits of it... but hey, perhaps it will boost his confidence and core muscle strength. It was one of those things on my long list of alternative therapies that I had to try. No stone unturned when it comes to possible benefits for Luke.

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Haven't heard a word from Insight Support Services who are supposed to arrange a weekly "social" situation for Luke with a typical peer. I'm not rushing them; the kid has enough on his plate right now.

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I just noticed this is my fifth September of writing this blog. No wonder I'm tired, lol. Five years, wow.

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September 29
I'm not going to lie... the past four weeks have been rough. I visited the classroom for a few hours and diverted/corrected Luke's slightly disruptive behaviours (from across the room with sign language, facial frowning/angry expression, and the odd threatening to come over there and show him what-for - it never came to that as he'd correct his behaviour before I'd get a few feet). According to the teacher and assistant, with my presence, Luke was calmer and had never sat that long in circle time ever and he participated in almost all the early morning "circle time" activities. I was actually quite proud, but at the same time saddened because this "good" behaviour was new and shocking to everyone. Sigh. Shit. This sucks. I feel like he pretty much has no autism at home, but at this school he is horribly autistic. He has even starting stimming again by grabbing imaginary things out of the air. I've never seen him do this before. After a few days of tears and anger and hopelessness (by me), I took a big leap of faith and "let go and let God" and decided I've done my best. I cannot be in the classroom full-time; and he really has the most awesome team on his side... determined to reach and teach Luke. The coordinator has been phenomenal with communication and respect and consideration; I take my hat off to her. The assistant is justifiably frustrated and my heart goes out to her, as her intentions are sincere and she has given such a valid effort. Unfortunately, we're one month in and while one would assume a "settling in" and caliming down... we culminated today in Luke's most outrageous behaviour, resulting in the "CALL HOME"... as in, come and get your kid. Ayiyyiyiyi. The coordinator was adamant that I not be discouraged, and honestly, I chose not to be. The relieving news is that a change will be taking place... the current assistant has accepted that perhaps she is not the right person for Luke and a new assistant will begin on Monday. This newly hired person has completed an internship at Chris Rose Therapy Centre for Autism and is more experienced with autistic behaviours. I can only believe that God has His plans and we go through these situations for whatever reasons. I truly hope this is a turning point and a positive solution to Luke's transition issues.

On another positive note, the two wonderful BCs from Kelowna stopped by and were dismayed to hear about Luke's continued behavioural issues. They are ready and willing to jump in, observe and guide the situation. Thank you ladies. They'll be back in two weeks and if the new assistant has any difficulties getting Luke to comply, we shall bring in these two experts to assist. Yay. I love a plan.

If people are wondering about the Respen-A, I wish I could tell them definitive answers. While we have definitely noticed an improvement in speech and socialization, we do not always know what to attribute it to. He has certainly taken a keen interest in watching other children... and copying them. Yesterday, he said to Joel "Let's go play" for the first time in seven years. For the past few days he's been insisting on feeding himself his vitamins (wow). Two days ago he was certain he did not want his zipper on his coat zipped up despite the fact that this has been an ocd-like insistance of his since he first wore a zippered coat. These changes are truly attributed to watching and learning what other children are doing. It's cool to see him "normalize" a bit and become more independent. I love it. We did decide to go down to half a patch after the first month as it seemed Luke was experiencing diarrhea. At half-patch he seems okay. My biggest issue is forgetting to put it on . One day (just one) he was AWESOME at school and that was a day I forgot the patch... so I experimented and took it off again a few days later and he was still a brat... so we put it back on, but then I forgot a couple days in a row. I'm usually pretty good and consistent with Luke's alternative therapies, but I'm sucking at this one. We waffle every day about whether he should wear it or not. I do believe it causes diarrhea, so I may have to change his calcium supplement from carbonate to citrate (as per the Facebook page advice). I should get on that and see...

He is such a sweet kid, it's hard to believe he's been so disobedient at school. That is not Luke. I am saddened that they are not seeing the "real" Luke. So we're in a valley that needs lots of prayer, and I know from 5 years of experience now that the mountain (the good days) are around the corner. It can only get better, lol. We're in "step-back" mode; so I'm desperately looking forward to the inevitable "step-ahead". Please.

On a small, but positive note... the speech therapist at Chris Rose has mentioned twice now that Luke is quite smart and actually has quite the extensive vocabulary. There is nothing like positive encouragement... we parents of children with autism thrive and survive on any ray of sunshine. I appreciate this man, and his optimism.

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BTW, my next course of action is Neurotherapy which is a non-invasive brain-mapping (much like an EEG), where the brain waves tell us what is wrong and where. A plan is put into place usually involving computer games controlled by the brain to repair and "make more efficient" specific problem areas. There are two clinics that provide this therapy... one is Dr. Wagstaff (he just began this last summer) and the other is Dr. Swingle whose practise is in Vancouver. I sent an inquiry into his website today and am eager to hear about appointments, prices, etc. www.swimgleand associates.com . We'll be seeing Dr. Wagstaff on Tuesday, October 18 so we'll have a conversation then about the whens, wheres, and prices.

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BC Children's Hospital finally called and confirmed Luke's next EEG: December 1st. It turns out our neurologist (whom we intensely dislike) usually only works Mondays and Tuesdays, but because she chose to take a few months off... all the appointments got bumped back a few months. Hence, our annual October appointment is now in December. We decided the day was a little inconvenient so I tried to reschedule and her next available appointment is Spring 2012. Arrrrrrgggggghhhhh. So we'll go in December and pray that she approves our request to slowly wean Luke off the medications. Cross our fingers. Also pray that we don't "lose it" with her, as her condescending attitude is beyond frustrating. And I'm saying all of this as nicely as I can, lol. Please pray that a) she's on time - often known to be 2-4 hours late for our appointment and b) that she's receptive to our request and compassionate.