July 16

Luke will be 11 soon.

We've just returned from a week with my family, celebrating my parent's 55th wedding anniversary (August 15). It was a great time together, and Luke really enjoyed playing with the kids. Well, at least watching them play and wanting to be included. It is still difficult for him to socialize appropriately; yet fortunately, the little kids are kind and intrigued in a sweet way. Luke has this exuberant noise he makes when he's excited, usually as a greeting to whomever he's happy to see. I think it throws people off a little, but you can't help smile. We will be working on these behaviours in the fall when he returns to school. No one wants to squash his excitement and his attempts to connect, but we'd like to finesse his greeting a little. Every time I see family I want them to see and tell me the changes they see in Luke, but it doesn't always happen because Luke's changes are so gradual and tough to see. Luke is often still so "very different" and stands out from the rest. I find it interesting that at home, in his comfort-zone, he is so relaxed and very typical, but in other strange houses/places he has a hard time showing people the "real Luke" as he copes with what must be overwhelming stimulants. In my dreams, we would go somewhere one day and people would not notice anything different about Luke, but that time has not yet come, and may never... so we just continue to focus on progress, and let Luke be loved for who Luke is, right now. And he's beautiful.

We've had a new issue arise, as if the tourette's wasn't already the icing on the cake. (Here's his list: Hypotonia, Epilepsy, Autism with a Global Developmental Delay, Tourette's). We believe Luke was bit by a tick over the May long weekend that transmitted Lyme disease into his system. The Lyme disease itself has not exacerbated yet, however we were fortunate enough to have an ER doctor admit the "bullseye rash" on Luke's leg was classic Lyme... and he prescribed a 2 week dose of antibiotics. Normally the "early catch/early solution" would be enough to ease our fears, however I've been in the alternative medicine world long enough to know that the solution the medical community provides is not always enough. I researched and connected with other people who have dealt with Lyme disease and was told to go to a specific naturopath in Richmond, BC. We went this week and Luke is now on a 6-week protocol of antibiotics and probiotics, and we feel like we're doing the best thing at this time in order to prevent Luke from developing Lyme disease in the future. According to this naturopath, Lyme can live a lengthy life cycle within the body, therefore 2 weeks of antibiotics is not enough. In mid-October we will have the proper bloodwork/testing done and see where's he's at. As a bonus, the antibiotics may resolve some other internal issues (ie, if the tourettes are "PANDAS/strep-related", but I don't feel that's very likely).

Luke has also had a few other issues the past couple months: He hurt his leg on a trampoline at the end-of-the-year school party and would not put any weight on it; I took him to the ER the following morning (he missed the last day of school), and fortunately it wasn't broken or fractured... a day later he was walking on it, thank goodness. A couple weeks later this happened again as he jumped into our little pool, super sore leg and he refused to walk on it (carry me!)... and once again it was resolved, within hours this time. Luke is not a whiner, and he does not say it hurts unless it REALLY hurts. One of the questions is if this is a flare-up of joint pain which may be related to the Lyme (joint pain is the first symptom). Who really knows? Maybe I've evolved into an alarmist about things, but when you've monitored a child's health as closely as we have for the last 10 years, you get a bit hyper-vigilant. Sometimes it's hard to discern between "just a typical child pain" and something that's more serious, sigh. Especially when they can't really tell you in any detail what's wrong. And I am SO NOT the type to rush to the doctor in a hypochondriacal-way.

At the same time, while in the ER, Luke said his mouth hurt. When I checked, sure enough, there's an abscess! Ayiyiyi. Give the kid a break, please!!! So off we go at the end of July to have dental surgery in Abbotsford and have the tooth removed. The abscess had burst and healed, and the infection is at bay, so at least he's no longer in pain.

I know that this seems like a rough summer so far, but on the flip side, we've connected with a brilliant homeopath who is helping Luke gently and holistically resolves his inner issues. Dr. K. provides homeopathic remedies, and in Luke's case we are beginning with a treatment that will negate/purge the negative effects of the years of Clonazepam Luke was on (when he was younger... this was his antiseizure medication that really doped him up as a little boy). Within months of the first treatment, we noticed amazing changes in Luke... he's more communicative (his talking is more and more amazing every day!), more focused, more calm, less tics. We were impressed. Dr. K.'s treatments also allow Luke to fight the Lyme disease naturally, so we're happy about having 2 remedies!

The Tourette's is still a constant concern. Since Dr. K.'s treatment, however, it's less noticeable and more controlled. We do have a few "bad days", which are tough. Luke does not tic while in the car or while sedentary (watching tv), nor when he's sick; so we're thinking it's stress/anxiety related. No one really knows though, there's no "one solution" for tics. The "parasite" theory seems inaccurate as he's been on the Citricidal for 7 months now and the tics have not gone away. So, who really knows? At least after the homeopathic treatment and neurotherapy treatments, they were reduced to being a lot less obvious and frustrating, both for Luke and us, which is a blessing. Our pediatrician's children had them as well, and there is no treatment... just ignore it and it will go away. In her case it went away after 9 months... ours still continues for a year and a half now...

I had a mother (of a daugher with autism) call me a while ago, asking my opinion on neurotherapy (she got my contact info from this blog)... we ended up talking for almost 4 hours. While I was so tired afterwards (I don't talk much, lol), it was so amazing to talk to someone that really gets it. Sometimes I am saddened by how lonely this journey can be; and the truth is, no one wants to listen to a whiner, let alone hear about constant negative medical issues. I can vent to my husband (my best friend) and he totally understands, but that's about it. And that's probably for the best... I'm not the type to dwell on the negative anyways... cup's half full kind of person. But it can be overwhelming at times, and I have difficulty in groups doing "smalltalk" about things that are light. People's lives seem so "light" while mine seems so "heavy" all the time. It makes it difficult to connect on a deeper level with others. The truth is, I know everyone has their own personal crap to deal with; so I will keep trying.

Joel has turned out to be an amazing teacher. Luke says "no" every time Dave or I mention the word "learn" or "teach" (as in, "Can we teach you how to...?"). Joel's naturally kind, so he helped Luke pratice piano a while back and Luke was okay with that. At school, Joel loves going to Luke's room for lunch, and having Luke join him for snacktime. Joel gets to hang out with Luke and the therapy dog every other week too. He likes Luke and being with him at school, which is sweet. He really wanted Luke to go to Grade 3 with him, but Luke has felt "inclusion" in the Grade 1 class... so he will move along with this cohort through the school system. This means, at age 11, he will be going into Grade 2 next year. With this group, he has joined them for early morning praise, and afternoon sharing (Luke even shared for the first time ever!!!). He joins them for gym and art and any field trips. Fortunately Luke right now is quite short for his age, so he seems to fit in just fine. It's where he feels included and comfortable. Luke really just wants to "be around" other kids... always watching them from the sidelines, trying to copy them... just "being" with them; and so far most kids are kind and let him hover. We will focus on his friendship-making skills in the new school year.

I had to address a "tricky subject" about the boy's physical bodies. Luke can be quite clingy and likes to hang on me still; loves to sit on my lap still too (as does Joel). I still am okay with it of course, but felt like I needed to talk the boys about their bodies and personal space and privacy. I even showed them an amazing video online about how a baby is conceived, which kept it quite scientific and amazing (and the bodily differences necessary between a "boy and girl"/"married man and woman" to make this happen). They are slowly learning about themselves and I try to address all of Joel's questions honestly, and age appropriately. Luke is delayed, but still in an 11-year-old body, so we need to continue to educate him on what is and isn't appropriate. The great thing about Luke is that it's all going in... he hears it, processes it, and applies it. Not all the time, but for the most part... you can see him "consider" what I've said. But he is still a boy, and often they hear only what they want, lol. Their minds quickly move to something much more fun and interesting, haha.

Luke graduated from the Chris Rose Therapy Centre for Autism this spring. Not because he concluded all the "requirements" but because we felt the Kamloops Christian School could fulfill all the therapies that he needed, on more of a one-on-one basis. We really wanted Luke to attend KCS full-time and have all the therapies "under one roof" with a committed, community/team that were all aware of his needs and resources. The communication factor was key... that one person (his new Behavioural Consulant) would be in charge of his social/physio/occupational program, while liaising with his one-on-one support worker, his speech therapist, and his behavioural interventionist, and the school's new special needs coordinator. While Luke seemed a little sad to leave Chris Rose, I think he will thrive at KCS... "I like KCS better!".

Speaking of KCS, we had our first (known) bullying incidents, both by and to Luke. After school, Luke likes to run around with the kids on the school field. However, he doesn't quite understand that he needs to "Play Soccer." So he tackles the other boys (and girls who dare to get too close). I talked to a parent about it, as I was worried he was being too aggressive and bothersome, but the parent assured me that his son loves to be tackled and they're all having fun... no harm done. I guess one day a little girl became upset with what Luke was doing (I didn't get the complete story, except a parent came up to me and told me this girl was upset and she was trying to get her to "use her words" to let Luke know how she felt). I talked to the little girl and she seemed okay, a little bothered, but okay. She didn't "play" near the soccer field again though. A while later Joel told me some of the older boys were throwing the soccer ball at Luke's head, as a joke. I mentioned this briefly in a meeting (I wasn't horribly upset and defensive, as Luke is not blameless in his constant interruption and refusal to play the game properly). The teacher that I told, however, had the problem solved the next day! I was so impressed, as schools often say Zero Tolerance of Bullying; but I don't always hear issues being resolved this quickly. They gave a soccer net to the older boys and made them play in a different section of the field, so the younger kids could have more "fun" playing, and it would be less serious. I was pretty pleased at this immediate and easy solution, BUT... I still felt Luke needed some guidance with appropriate play. Around this time, the Ministry of Children & Family Social Worker informed me that we were next on the list to receive a one-on-one support person to work with Luke 4 hours a week (FREE for 6 months). We asked for a man for a change, and R. was assigned to us in May. Part of his goals with Luke are appropriate play (specifically soccer)... so R. would go on the field with all the young boys and guide/prompt/show Luke how to play soccer. As there was only a 5 weeks left of school, R. has since taken Luke biking, swimming, and to playgrounds where he can practice his social skills. R. keeps Luke talking and calls him his "buddy"... Luke always seems so much more mature when he gets home from his time with R. So glad to have this great male role model in Luke's life.

The next school year is looking amazing for Luke. He will have the same one-on-one, Mrs. S., for the fourth year in a row (yay for consistency!). He will have a new Behavioural Interventionist working one-on-one with him for three 2-hour blocks a week. He will have 1 hour of private speech therapy 3x a month; 1/2 hour of physiotherapy per week; 1 hour of vision therapy per week; 1/2 hour of piano lessons per week; 25 sessions of neurotherapy throughout the year; 4 hours a week with his "buddy" learning one-on-one bike, swim and friendship skills; and I still have some funding leftover for a potential play therapist or occupational therapist. I remember seeing a counsellor a few years back and when she told me to "let go, and let God" I realize now that when I finally stepped back from "doing everything", such an amazing team of people have stepped in to help and nurture Luke. I get to be his mom, not his therapist... and while I continue to busily advocate for him, I'm relaxed in every other way. The boys are such fun to be around... really sweet for the most part and so independent. Luke is learning more and more "home skills" and even took the bacon out of the oven with oven mitts the other day! He often helps empty the car after a vacation or with the groceries... without asking. Joel keeps us laughing with his goofiness, sharp math skills, imagination and game-playing prowess. He picks up card games quickly, and will often win against adults. Despite all the appointments this summer, we are having a blast with family and friends, whether it's in Abbotsford, Gabriola Island, or at our trailer at Mile High Resort. I am not "teaching" him anything this summer, except how to be a kid... laugh, run, play, swim!

Luke will be celebrating his 11th birthday on July 26, Minion-style. We'll be going to the new Minion movie, and taking him to his favourite restaurant (Senor Froggys). The years are flying by, but it's all good. I love watching both boys grow. We have a great life.