October 11
Good news! Luke is doing better. We have a new assistant as she's so great. She showed up just as I decided to "Let Go and Let God". There was nothing more I could do and my depression, crying and discouragement was not helping the situation, so I gave it all up to God. And he heard me, as always. The new assistant, Ms. E. is AWESOME. She gets him, she gets autism. This past week Luke has sat up to 45 minutes in circle times, science classes and library times... integrated with the rest of the classroom. He has been playing with the kids and even played "tag" with a couple boys where he was a "puppy" and had to say "puppy power" and go down on all fours to keep from being tagged. He even said (a day later) "I played tag with Wyatt". How cool. His teacher said he had the best day last Thursday... where he even sat nice and still for 45 minutes during a chaotic all-school chapel in the theatre room. How amazing is that? So, my advice to all us worriers... give it up to God... it will be okay.
Another sweet note is that he came in during recess one time with two kids holding hands and with their arms around him. His class is extra caring and I am grateful for each one of them. I asked him today who he played with and he said "Rose"... the one girl of the quadruplets that has taken a shine to Luke. She's adorable.
At one point as well the coordinator discovered a new strategy for teaching Luke to spell. She put magnetic letters through a door of a little firehouse he was playing with (he obsesses about doors still and often opens/closes them). She put the three letters "c, a, r" through and in this way he is interested enough to learn to spell. She calls it the "learning door". Isn't that clever. She also went for a walk with him in the big field next to the school and he started fidgeting... so she wondered what was going on? and realized the sun was quite bright.... she asked him "is the sun too bright, shall we turn around?" and he said "yes" and when they turned away from the sun, he was fine. I cannot get over how "in tune" to Luke these beautiful women are becoming. See, nothing to worry about, haha.
We had an awesome weekend with family for Thanksgiving. My dad was impressed with Luke's conversation; it's nice to get objectivity about Luke's progress.
As far as "therapies"... right now he's on the Respen-A.com and I feel it's really helping him especially to socialize. There are improvements across the board with Luke lately, and while I cannot pinpointedly attribute it to a specific treatment, I personally don't care either (never was a scientist!!). He is doing awesome and is well-behaved and sweet... he's even trying to smile a cheesey smile when you ask him to (this is phenomenal). Way too cute. We must acknowledge the two other treatments, which is the oxygen therapy (some families noted major changes 4-6 weeks after the treatment ... we're at 9 weeks right now). The other alternative therapy is the dark field technology that Dr. Wagstaff prescribed. We will see him next week, October 18 in the afternoon, so that will be interesting to see the comparative bloodwork. I'm looking forward to that.
I am also still looking into neurotherapy with either Dr. Wagstaff in Winfield, BC or Dr. Swingle in Vancouver (am currently reading his book) www.swingleandassociates.com. Fascinating stuff... non-invasive and permanent changes to make the brain more efficient and specifically pinpoint areas of inefficiencies and retrain them with computer programming (games). Astounding.
Every night after dinner Luke and I work on his handwriting (still on capital As, but he's really doing them!!); numbers (really hard for him!); bible verse (good at memorizing); and spelling. It's fun to take just 10 minutes a day to practice with him.
October 19
Welcome to my emotional roller-coaster life. I'm just going to be honest here. After a couple weeks of the school team working with Luke and hearing mostly positive results, I received another email (from a new person whom I hadn't heard from yet) addressing Luke's disruptiveness, the distress of the other students, and the concern whether the school is capable of teaching Luke due to his "considerable needs". Ok, I realize I'm just emphasizing the negative... they also said they loved him. So this was just constructive criticism to make sure Luke fits in better and that they're doing everything they can to help him. I get that. I really, really do. But I'm once again SO tired of this. This email so dampened my spirits on Friday that I woke in the middle of the night, got up and cried on-and-off for 2 hours while screaming in my head that "I am so done!!!!" After choosing not to address the email, I was contacted by the coordinator Monday that she would indeed like to meet with me to "find the piece of the puzzle" that's missing for Luke's afternoon time. He tends to be overwhelmed and tired and prone to behavioural issues for the last couple hours of the day. I emailed my strategies to a) call in the ocai team (his behavioural consultants); b) have the assistant shadow Luke at the Chris Rose Centre; and/or c) incorporate the reading program on the computer that he began last summer during the afternoons as a quiet activity. I have not yet heard back but made myself available to discuss options next Monday morning. We shall see. Btw, I bought myself some flowers, had a nice nap and watched a chick flick to make me feel better (thanks husband :).
My son is awesome. He tries so hard, but it's SO hard for him to learn. He is riddled with anxiety in all these new situations and environments. But he is so beautiful and sweet and HE TRIES; did I mention how far he's come? The other day Luke was telling Joel, "Let's go upstairs"... they are PLAYING together, which is SO unbelievable. Yesterday he went ice skating and loved it (still needs support from an adult while he "walks on the ice"), but he was totally looking around at all the kids, and concentrating / focusing on skating. He was so amazing... even the teacher and assistant were impressed.
Luke has his last horse-back riding therapy (fall) session this afternoon. Last week when he was riding out to the trail past me, he looked up proudly and said "hi mom" ... so cute. I asked the trainer how he was doing (especially as he was nervous when the horse trotted). She said that Luke now loves it when they horse trots (!) so they use it as incentive for him to get the tasks accomplished. How fun is that.
We went to Dr. Wagstaff yesterday afternoon. He tested all of Luke's supplements and took him off half of them. Luke's been on them for more than 3 years, so apparently his body is tired of them and it's necessary to take a break from them. We'll go back in a month and see which ones he can resume. In the meantime, Luke's on a skookum liver detox as his liver is in overdrive trying to get rid of crap. The dark field test couldn't be done until Luke is finished the second round of homeopathic drops, so we go back in a month for that. Apparently Luke's original test results were so intriguing that Dr. Wagstaff is hoping to do a study / paper and have 25 children tested (Canada has agreed / waiting on the collarboration with Germany where the drops/scientists are from). Fun, hey. Fun to be part of the problem-solving. Wagstaff didn't have much of an issue (surprise, surprise) with the Respen-A; but encouraged the half-patch (as opposed to the full patch). What else? Hmmmm... his biofeedback is different from Dr. Swingle's, but he said Dr. Swingle could help Luke right away; whereas he would need Luke's brain chemistry to be more stable and his focus to be better. I, btw, called Swingle's office and they're closed due to renovations and the mailbox was too full to leave a message. Arrghh. Wagstaff also gave me the name of a woman to contact about the possibility that Luke has Irlen Syndrome (a correctible visual disorder)... so I will call her asap. Man, there's not enough time in the day. As far as the EEG results in December, he supports weaning Luke off the medications... "try it and see". Luke's stimming (grabbing at the air), snorting, itchy skin, ocd about doors, and night-wakings are all once again due to his dopamine levels; which Wagstaff is treating and we should see some changes in the next couple weeks. Included in these symptoms is possible hallucinations and wild dreams... which explains Luke waking up scared at 1am.
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Later that day.... Just got back from horseback riding. There is apparently still one more lesson next week. Luke was taken off the horse half-way through the lesson because he screamed, after screaming once and being warned that if he did it again he'd have to go off the horse. It's shrugged off as he just learned the "no screaming rule". Isn't that just great. These are $30.00 lessons for 1/2 hour... so I'm just a little choked at the waste of money; and therefore the waste of time; and therefore the waste of gas (it's way out there for us). Arghhh. Arghhh. Arghhh. That, and the fact that anyone who works with children who have autism should please realize that we, as parents, CONSTANTLY hear the negative. AND no, you don't get used to it. So despite the fact that he was screaming, perhaps just throw me a frickin' bone here and let me know that he's still getitng something out of these sessions; because I have no idea. I think she must sense I'm not a huge "horse" fan, or something...
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Joel continues to amaze me. He's so sweet... his teacher at school says he's really quiet and keeps to himself. At ice skating yesterday he was a natural again; we had a lot of fun together. Yesterday he said to me "You know what your problem is mom?" I said I would love to know (laughing)... "You talk too much!"... Hahahahaha. Daddy was wondering if he might have said that to Joel at some point (oops!). Joel is a great companion at home, and is all about the money right now. He specifically wants quarters in order to get a "Lucky Egg" in the machine at the grocery store near our trailer (btw there's a tiny piece-of-crap prize inside... last time was a bat-ring). He wants his cousin Steve to do a major trick with quarters... and then give Joel the quarters afterwards :). That's my boy.
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