May 27

Holy ups and downs again. Not a nice quiet month, lol.

Luke did not seem to settle down after Spring Break and despite everyone at the school's best efforts, he was extremely challenging behaviourally. Extremely. Throwing, running out of school into the parking lot, tipping furniture, screaming, growling. All kinds of fun stuff that a parent just loves to hear. Basically there were 3 days of stress that pushed all staff to their limit. You can (hopefully) imagine my deep sadness and emotional ride. Not something I'd wish on any parent. Sigh. I'm usually an optimist and an idealist, but this one broke me. Raising a son with autism has been not only the most difficult thing to do, but also the most rewarding and fulfilling service I have ever experienced. I look back at my career, and am so keenly aware of the irrelevance and pettiness of day to day trilvialties. While once my goal was to excel at my craft as graphic designer and climb further and further up the so-called ladder; now that all seems so silly. I am content to continue to use my (God-given) talents to His glory and His purpose. I am often reminded (by Him) that He will guide my career and that fulfillment comes from loving what you do and being successful at what He calls us to do. And so I focus on Luke and parenting, and joyfully get to continue designing on the side. God is good.

Having said that, I am sorry to say that Luke's assistant has quit. Unexpectedly, and I'll be honest, I felt blindsided. And while originally we were led to believe it was because of our son... it was later explained that there were other circumstances. Once again, we are heartbroken and trying our best to cushion Luke... who in retrospect was probably more keenly aware of her feelings and intentions and was in a reactive state of mind; but will we ever know for sure? I don't know.

We learned this at the "dreaded" meeting with the principal and the special needs coordinator. Fortunately, Luke's dad took a bit of time off work to come along and thank heavens he did, because I needed the moral support. What a tense meeting. I was sick / nauseous / couldn't eat / couldn't sleep prior to it, so that's how much fun it was. (Fortunately I had friends visit on the weekend to keep my mind occupied, and one dear friend who was my sounding board!!). But in retrospect, it went well. We were not a typical couple who gets defensive and angry and are hopeless and sad. We went in with positive attitudes, thanked them for all their successes, requested a plan B (which the Special Needs coordinator had, bless her!), and explained that while this was their first wall, we had hit many, many, many, many before and while we felt for them and their frustration, stress, anger, tears... we encouraged them to continue the journey and climb the wall and that they would be unbelievably rewarded with their efforts because of the gains Luke will make and demonstrate over the next while. I think they were a little shocked and in awe of how calm and polite we were, and our optimism. (As I pat us on the back). Regardless, the meeting was a blessing. The one thing I took from it is there is never a lack of love for Luke; there is uncertainty and a bit of ignorance around autism; but there IS love.

Anyways, while I would love to rant and rage about the unfairness of life and how depressing and dark the valleys can be, I chose this time to "Let go and let God." The pattern in Luke's journey has been phenomenally clear. Life sucks in the valleys, and we must climb the mountain to progress... but there is always a new top of the mountain... new vistas to reach towards, and new hope. While I will not lie and pretend I was unaffected and grinned through the whole ordeal (trust me, I cry... and I'm not pretty when I do)... I did pull out of this one quicker than ever. To the point of even saying "Yay, a valley... that means a huge leap forward is just around the corner". Now that kind of positivity is kinda freaky. But it's true. I refuse to see these valleys as negative. Life hands you lemons, you make lemonade.

So we move forward... we thank Ms. E. for all the success, encouragement, and love she had for Luke. We wish her nothing but the best wherever her career leads her; and say "no hard feelings". This is not the first time someone has come to the realization that working with children with autism is not their true calling, or specifically with Luke, nor will it be the last. It is what it is. After this paragraph we will not dwell on it anymore, but look forward in eagerness to see what God's new plan is and how awesome it will be.

So, for me, while I understand their feelings, is the training / teaching of staff at Luke's school. We are, unfortunately, breaking some very new ground having Luke in a Christian K-12 school. They are all loving and wonderful people, but there's a lot of misconception and education about autism and I can only hope that the school and people become a better place for having met and accommodated Luke. It will, however, not be easy and I feel for them. I often say while I did not choose this path, God did choose me... and I, for one, will not (and cannot) quit Luke.

So we hit a wall... and what do we do? Once again, and again, and again, and again, and again, and again... we climb over.

Enter Ms. M., Luke's biggest advocate and my greatest ally. She is beautiful and compassionate and has walked my walk (raising a son with FASD). We are kindred spirits and it is a joy to work with her as we rally together for Luke's right to Christian education. I thank God for her.

We met the other day and together we are planning Luke's re-entrance into the school. He is currently at home because the behaviours were uncontrollable and the school had no other choice. So our new plan involves finding a new and the right assistant for Luke (more specifically someone who will stick around for a longer commitment as change is difficult for these kids). We have someone in mind, but I'll wait until God gives the blessing before I mention who. Anyways, we are once again collaborating; starting at the beginning; baby steps; with another meeting planned for this week to coordinate "Luke's games" / activities. He will go back to school / perhaps join his class on Monday for 4-hours, after which he will come home. We'll see what happens after that (play it by ear).

On the homefront... ironically, Luke has been AH-mazing. In some areas. We were not blind to the fact that because of all he'd been through in the last few months, he was resorting to his "comfort" behaviours (aka "stimming"). For Luke, this means playing the fall off game: throwing small toys from the top level of our split-level house to the level below, or behind shelves, or into trees outside. He can do this for quite a while, and we often allow it (to some extent) as we realize it's his way of "regrouping" much like we bite our nails or have a few drinks or overindulge on our favourite comfort food. We now know that he's going through something physically and mentally that is too overwhelming and he needs to, for lack of a better word, "vent". We're okay with that now. If it gets too much we re-direct him, and he's usually compliant... but we also give him space and/or try to talk to him about his feelings.

His feelings. That's been an eye-opener. During one rant (he's been acting out aggressively with our BI Ms. S. as well — but not with us)... he voiced "I AM ANGRY!"... I'm trying to teach him to punch a pillow rather than destroy his room (this was a new thing... had never done this before). So we have to work on how to get him to properly express / vent his feelings. While most would seem frustrated by this, I was inwardly thrilled. I'm sorry, but this is HUGE! He said "I AM ANGRY!" ... Yay!!!! You go boy... voice your feelings... woo hoo!!!

He is also becoming keenly aware of other people, specifically babies... when he hears a baby cry he says and points "Is he crying?" "Is he sad?" Like I said, expressing his own emotions and seeing / reading emotions in others is a PHENOMENA in children with autism. Blowing my mind.

One other HUGE ACCOMPLISHMENT is the fact that Luke has learned how to bike! This is beyond exciting. You can only imagine our jaws dropping when we took him to McArthur Park on Good Friday afternoon to see where he was at with it; and HE BIKED. And by biked, I mean ALL BY HIMSELF. Okay, he was trepid and slow and once in a while needed a steady assuring hand on his back to keep the momentum, but HE BIKED BY HIMSELF. THANK YOU CHRIS ROSE!!!! This, people, is a feat worth celebrating for weeks and months. This has sent me over the moon. And while you think, enough already, I don't care. THIS IS HUGE... and you would understand if you TRIED EVERYTHING to teach him to bike... for the LAST THREE SUMMERS. This is a milestone that the entire world should be celebrating... ok, sorry, went a little over the top with the whole "world" statement, but I'm not deleting it, lol.

Another interesting April event was our meeting with Medical Genetics from BC Children's Hospital. We've been part of a study for the last few years involving bloodwork from Luke to try to determine the genetic cause of Luke's issues. Believe it or not, they found something. He has a slight "deletion" on Chromosome #2 which is the Gene NRXN1. This specific gene deals with synaptic difficulties. For those of you who remember high school science, synapses are the connections between cells... and for Luke there are synapses that are not connecting, hence inefficiences in his brain. Luke's dad and I had our bloodwork drawn as part of the study and it was discovered that Luke'd condition is "de novo" which basically means, "new" ... as in, neither Dave nor I have the same deletion. Which is important information for our extended families as the nieces and nephews procreate. Rest assured this started with Luke, and was merely a skewing in the lining up of Dave and my chromosomes when creating Luke... a super slight blip that can occur at anytime, anywhere in the chromosomes and is completely flukey. The other important point to this information is the fact that Luke's dad and I did nothing to cause this: ie, our age (we're older than most), what I ate during pregnancy, the fertility drugs I took (after 7 years of infertility we attempted this just once and got pregnant first try with Luke but it had always niggled at me that this might have affected him?).

On the plus side, there is nothing about this genetic result that states Luke will "never do this" or "never do that". There is just not enough information, first of all; but there is also the assurance that some of the other children that had this same deletion did inherit it from one of the parents, and they did not know it. So obviously these parents lived with the problem and got through it. I don't know anything at all about these other case studies, so have no real information about what they are like and what their struggles or issues are (if any). In any case... the geneticist assured me there could be people walking around with this deletion and not even know it. (As an aside, Dr. Swingle also warned not to take anything genetic to heart as he has proven time and again that the brain has plasticity and can become more efficient!)

This fascinates me because perhaps this is the underlying cause of Luke's issues, but more importantly, perhaps he doesn't have "all that autism" generically envelops. By that I mean, kids with autism don't "get" emotions. They don't see it in others or feel or empathize with others or understand that other people have feelings different from theirs. Luke is not like that at all... if anything, he is hypersensitive to people's feelings (not all people), but specifically Joel. If Joel's in trouble or hurt or sad, Luke wells up. This is VERY unusual for autism. In any case, the joy of this realization is the fact the Ms. M. is aware of this in Luke too and made me aware that the "description" of autism does not always fit Luke. Well, that's just the kind of positive news I really like to hear. Luke is certainly something else... lol. It's often been said... there's something about Luke.

Other new advancements / achievements:
• Today Luke ate a big bowl of porridge for lunch, and a small bowl of soup, and a small bowl of applesauce. I offered him his favourite: chocolate chips and chocolate chunks for dessert. I put the chocolate chips in the small bowl and was about to put some chocolate chunks in when he said "No... I'm TOO FULL!"... What!?!?! Haha... too full for his favourite?! It was so, so, so cool to hear him say that! To feel full and express it. This kid rocks.
• Horse back riding therapy has begun again. 10 sessions, started April 11. He had a great first start, but the second one, April 17 was HIS BEST EVER; as told to me by his trainer. SO proud. Awesome-sauce Luke!!!
• His conversations are so exciting. One day he had to get a bowl out of the dish-washer and him and his BI Ms. S. had a long conversation about "wet" and "dry".
• I often say "I Love You" and a few times now, Luke has repeated it back to me... perhaps not with the feeling that most kids express, but it's still nice to hear from his little voice, XOXO!
• He is constantly asking "Why?" It is a joy to my ears... you can actually see him thinking about WHY!?!
• He is constantly pointing to things and saying "What's this?"
• He is often looking outside and commenting "Look at the trees", "Look at the birds".
• Luke can now watch an entire movie for a full 2 hours. This is a big deal. We spent a lot of "sick" spring break watching movies. His latest fav is Curious George. It's a great movie with lots of action and the soundtrack is by Jack Johnson (amazing songs). We are taking Luke and Joel to their very first Cineplex movie on Saturday (Madagascar $2.50 shows). We will play it by ear, and see how they do.
• Luke attended another birthday party last Friday. It was in one of those where there's a ton of video games and you need tokens (and there's laser tag and indoor blacklight mini golf). He did well, played the basketball game a lot and got lots of tickets which he cashed in for a sweet (cheap and crappy) prize. And there was lots of candy, and we picked up GFCFSF pizza to go from Boston Pizza and brought our own cupcakes, so it was a success. He lasted quite a while, despite the lights / noise / craziness. I had to keep an eye on him the whole time so it was a little stressful for me, but I think he really enjoyed himself. He had been talking about W's birthday party all week, so he was definitely excited about it. I did have to nip the night early (well, 7:45) as I could see he was engaging in a bit of negative behaviour (throwing balls from one game at another), so we whisked him out of there and defused the situation before it escalated. Whew.
• Luke is slowly learning to read. We are successful, believe-it-or-not, with the Dick and Jane starter series. With a combination of Mrs. Alice Ross' exercises and utilizing pink paper instead of white (for Luke's light sensitivities and possible irlen syndrome issues). It's exciting. He will figure this out!!
• He has been singing and one time asked me to watch him dance. Woot woot. Even in Sunday school I am super impressed with his great behaviour and he is actually singing a bit and doing the actions to his favourite songs. He does, however, need to be bribed to be good... if he behaves in Sunday school he gets to use the iPad and have some chocolate chunks when he gets home.... if not, he has no iPad, no chocolate and has to spend 7 minutes in his room alone (HE HATES THIS!). Another thing just recently was Luke's physical strength when colouring. He has always been weak and light and basically scribbles with his crayons, but this time he was assertive and strong and deliberate... still scribbles, but dark and lots of colour!
• He has been able to do his seat belt buckle all by himself. It's quite hard even for an adult, so I am impressed with the progress of his fine motor skills and hand strength.
• He has been dressing and undressing himself lately. Alright, he WAS streaking naked through the house the other day... have to make sure he knows that can't happen at school, lol. BUT he is self-dressing which is cool...
• We all did the Walk for Autism on Saturday and while the kidlets were a bit slow and whiny towards the end, they were successful (ok, we took a break with a blanket and snack on the beach at one point, but it was such a nice day!!). We were pleased to raise $845.00 for the Chris Rose Centre for Autism, and are grateful to all those generous souls who donated. Also, special thanks to my friend C for her piggy-backing services!

It may be just me, but I feel Luke is experiencing a bit of an "awakening". This might be both stimulating and frightening for him, hence the steps forward and the steps backward at the same time. This is what I like to believe.

• Luke's first Reiki session (laying on of hands and energy healing)... we found a wonderful person who is willing to do this in exchange for my design/marketing services. Yay. No stone unturned, I always say to you skeptics. No stone unturned.

• An appointment with Brenda from www.irlen.com to see if he has any of the symptoms of Irlen Syndrome. Should be fascinating!!

• An appointment with Dr. Wagstaff to resolve all of Luke's inner turmoil from the anaesthetic (dental surgery), and his immune system being compromised by his illness during spring break. We will also be able to see his bloodwork on the cellular level with a dark field technology update.

Joel:
There was one day when Joel was really frustrated because Luke kept repeating his name, but then wouldn't say anything when Joel said "What?"... he ran to me crying. I hugged him tight, and before I knew it I said "Luke has autism, which means everything's difficult for him. We're his family, so we need to be patient and caring." I left it at that. A day or so later Joel stated, "I don't have to go to Chris Rose." He's making the connection slowly.

One small note that is starting to upset me a little. I think the teasing of Luke will begin soon (or has already, hmmm). Joel said some boys were talking about how Luke ate all the toppings off his pizza... I know, innocence probably, but it does worry me a little. I suppose it's inevitable, but I'll have to pray about it and hope it's not going to be a big messy bullying situation in the future. But let's not put the cart before the bull.