June 17

Luke's back. Yay!!!

What a sweet wonderful kid. Talking lots again, socializing, asking questions, working hard and learning. Learning to READ. We're on his SIXTH Dick & Jane reader book, so he has more than 10 words he recognizes (sight-reading). So exciting. He does still have this niggling stim (clapping hands and stomping a bit), but I'm going to take him to Wagstaff in a week to see what else we can do about that. I can't believe it's taken almost 4 months (with Dr. W.'s help) to get all the crap from the dental surgery chelated from Luke's little body. It's been so difficult to watch him slide so far back, but now we can see him jump forward. I hope the summer brings all good things and many major advances before the next school year. I am determined to have him print his own name free-hand by September, and wouldn't you know, he can already do the "L" and the "U" after one week of assertiveness. This has become my BIGGEST beef about Luke's assistants wherever they are. They're too soft on him. They actually ASK him if he wants to do something and if he says "No" he doesn't have to do it. WHAT? So my new mission is to jump in and show these people that Luke will do it, you just have to be more persuasive. He's not going to progress if we don't push past some of his anxieties (and theirs!!). Gently, of course. But ASSERTIVELY. Show him who's boss. So that's my rant. STOP CODDLING MY KID... HE'S MORE CAPABLE THAN YOU ARE REALIZING. Case in point... Luke's been swimming every Friday for a whole year. He used to love to jump in and go down the slide and he was getting used to being dunked. After the "episode" (the dental surgery set-back) he became, understandably, more anxious than ever and began to cling to his assistant. When I knew he was "back" I joined them in the pool and with his new assistant (she was unsure of Luke's capabilities) I showed her what to do... slides, jump off the side, he doesn't want to dunk? DUNK ANYWAYS. He'll be fine, and he is. Fortunately, this "new since spring break" assistant is wonderful and has since been pushing Luke further and further. She did mention that Luke was grabbing other kid's juice boxes and squirting them and I said "PARDON?" Who's in charge? Luke is expected NOT to touch other people's stuff and/or food. This is UNACCEPTABLE BEHAVIOUR and HE KNOWS IT. So don't let him test you; show him who's in charge. Same with babysitters. Found out my family and/or some people who babysit him are driven to anger by his brattiness. I'm so tired of people getting sucked into Luke's game and letting him win. He is scared and anxious without me, and he is TOTALLY testing you because without me he needs boundaries. I get that people don't know what to do around the word "Autism" but I wish people could see that he's pretty much a typical kid, just delayed somewhat and so think about what you would do to a 3-year-old that is bratty. This is the most tiresome aspect of autism. We have been so cocooned working on his recovery, and now that he's in the "real world" of school and we're starting to "dream" of vacations away and hoping people will want Luke to stay overnight at their house at some point; but I need people who GET Luke and will help him reach his full potential. He is not a baby. He is smart. And everything is 4x more difficult for him, and yet he really tries. If you believe in him, and encourage him, and give him breaks so he can digest what you're asking of him / count to 40 so he can process your request and formulate his own reply without distraction. And give him your rules and expectations, he will comply. I so need more people on my Luke's team as he grows up and we try to back off more and ask for more help. I am really hoping to find someone at our church to be Luke's helper in Sunday School. Need prayers for that please, that God will reveal the right person :).

So my goal with the new "assistant" (in September) at the Christian School is to make sure there is NO coddling. He can be in the classroom, and he WILL be in the classroom. He will slowly become desensitized to the noise. He will participate again—like he did awesomely today in Sunday School: actions to songs, singing to songs, colouring his paper, using markers on his craft, answering questions, repeating the Bible verse. I pray he never (and I'll be more firm next time around) has to leave the classroom for a long period of time again. He can do this.

Having said all that, I did meet a wonderful woman who has a daughter in Joel's class that may be on the spectrum. She's not only a warrior mom like me (SHE DOES THE GFCFSF DIET — WOOHOO!!) she's also a really, really nice and easy person to talk to. I am looking so forward to a friendship and partnership with her as our kids go through the school years together. A kindred spirit and HUGE support for me. Believe it or not, her daughter was going to see Dr. Swingle too! I have never met anyone like me that is willing to do all that we are doing for Luke and TOTALLY understands the alternative, controversial, naturopathic lingo! To finally be able to talk-the-talk with someone is such a blessing. Needless to say, the first time we met a few weeks ago we talked for 3 hours.

And my other support person (okay I am starting to create my network!) and I got together for a 3-hour chat. I want to sincerely thank her (she knows who she is) for her wealth of knowledge. She's been with me ever since Luke's diagnosis. She was a forerunner in the wheat and dairy free diets as well as naturopathic solutions. She has advised me throughout this journey and I consider her a God-send in my life. Not only does she make me laugh, she ALWAYS has new advice on what to do next. She's Warrior Mom #1. Her son just graduated last week from high school and has a job at a local grocery store where he is so loved that they are considering grooming him for a higher position. The fact that he has practically memorized the entire store has been an asset to his success (yay!!). I love hope and success stories.

The other day we were sitting on the couch and Luke looked at me and said "May I please have some blanket?" and when he was properly settled in and snuggled beside me he looked me in the eye and said, "Thanks for sharing!" What an amazing kid. I cannot wait to have full-blown conversations with him. He rocks.

The summer plans are looking busy already, but I'm excited because I have so many positive plans with Luke. Besides his exciting reading program, we'll be going to Dr. Swingle so I'm relying on that to show big results.

Luke continues to be on an amazing roll. He is so talkative, asking lots of "why?" questions and has just started asking "where?" questions. I fould this new awesome book called Creative Therapy for Autism and I'm stoked about implementing some of the more creative therapies. The fact that Luke scribbles freely (rather than in squares, lines and boxes) means he's probably more "right-brained" than "left-brained". Knowing this, I am trying to encourage his creativity. I am beginning with scribbling with different coloured crayons (with pressure) and showing him that different areas of the colouring page can be different colours (ie from a colouring book: ears are pink, fur is brown, collar is blue). I'm also exposing him to classical music (at nights when he's in bed) to help soothe and calm him. The first night he was asleep sooner than the hour or so that he spends awake, running around with Joel, and jumping on the bed (ayiyiyi). I'm not sure if this is going to work, but I'm willing to try anything. It is quite obvious that Luke is very uncomfortable with numbers, so we'll have to get more creative about teaching him math skills. The other interesting thing I found in the book is the realization of how much Luke actually takes in. It speaks to the fact that just because you don't think they hear your or "get it" doesn't mean that's true. They actually hear so much more than we give them credit for. I am on a new kick of teaching and talking to Luke about everything in more detail (like when he asks a question) and I'm impressed with how he's been pondering my words more deeply. It's made me so aware of how much he is learning and capable of learning. This has been a cool revelation as I am learning to explain and describe things in greater detail whereas before I would always keep it brief and not too complicated (short sentences). I'm so excited by this new discovery. I love reading new cutting-edge books... when I have time!!

We have lots of plans for the summer which include a family reunion on Gabriola Island, followed by Dr. Swingle appointments in downtown Vancouver. Luke is asking questions about when and where. He ALWAYS wants to know "what comes after that?" ... it's a constant question that can get old very fast. He is still obsessive about doors, but we constantly remind him that no one else is as interested as he is in doors. ("Why is that door open? People coming in and out? They want fresh air? Is it stuffy inside? They will close the doors when they leave?"). It's not such a serious OCD, so I'm not too worried about it, and it has lessened before... and it will again.

I am once again pleased and hopeful of his future. He is more savvy than ever, more social, and more "with-it" if that makes sense. I am once again content as we're on a "high" mountain. I hope the next valley does not happen for a long time.

We did attend Vacation Bible School all this past week and Luke was so well-behaved. At some points he actually sat in the front row of the church with Joel among all the other kids. He attempted actions and song-singing and did his crafts; and even skipped around on the field during outside time / sports. He would be quite tired for the last 15 minutes, so I'd cut him some slack and he'd get a drink from the fountain or run around a bit instead of sitting still in a chair. I was totally okay with that. He was great. People were also very kind to him and kids were nice. It was a good experience.

I have been doing "Luke's games" with Luke almost every day (half hour of homework) to teach him to read as well as about 20 different exercises. He's such a good sport about it, and he is now sight-reading 20 words. He is learning to read! Woo Hoo!

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Joel, btw, loved VBS as well and impressed me with sitting up front and putting up his hand to answer questions and volunteering. It was nice to see because he's had a tendency to be quite shy. I think it helped that I was in the back, his safety net. He was right in there, doing actions, singing, jumping up and down, playing soccer, freeze tag, duck-duck-goose. I was so happy to see him so well-adjusted and happy. He didn't even need a "buddy" or "friend"... he was quite content and self-assured. He has been asking some tough questions about faith, and the other day I heard him praying to God for "Mommy to finish her work soon so she could come and play on the trampoline" ... I loved hearing him pray. Yay.

He did again ask me if he had to go to the Chris Rose Centre when he was seven and I said, "No, because you don't have autism".... "Why don't I have autism?" ... "Because you weren't born with it" ... "And Luke was born with it?" ... "Yes". Luke heard this whole conversation with no comment. I had been wondering when to tell or talk to Luke about the fact that he has autism, and a friend sent a link to answer this very question (answered by famous Stephen Shore, a man with autism). The reply was when they start asking questions about why they are different and it went into detail about a 4-step plan to explain everything to the child; however he also ended the interview with a statement about how ideally there would never need to be a specific time if the family would comfortably use the word "autism" around the house always, just as they would use the term "he's blond". This relieved me, because we have always used the autism word around the house since Luke's diagnosis... without shame and without blame. It just is, and it does not define Luke. It is simply a matter of fact. Ever since I watched the interview I've been using the word much more readily in conversations with the boys. It's been a good thing.

Need to mention our trip to Dr. Wagstaff. Luke was quiet and well-behaved during the appointment. I was very pleased (usually he is bratty and trying to push my buttons). He was treated once again for anxiety, OCD and his stims (clapping hands together). It's been 2 weeks since and Luke is not clapping his hands together anymore. I love that it works! He also approved an infrared sauna, with precautions to only have Luke in for a very brief time and then wash/wipe him down afterwards. This is a natural method of detoxifying and would be good for Luke, however they're about $800.00. So we'll wait and see if we can eventually afford one. I also asked about homeopathic vaccinations and he said we could get them done in town by any naturopath, so I will make an appointment for Joel to get the tetanus, polio and diptheria. The homeopathic vaccinations are not as powerful as the needle ones, but it will give me a bit of peace of mind.