October 7

Luke is doing really well. The only tough part has been that he's developed a nervous tic, since January, which involves throat-clearing, facial scrunching, coughing, and eye blinking. As per all the info you can research on the internet, there's not a whole lot we can do about it, except ignore it and not make him anxious about it. I have, however, accessed all my resources for help: The neurotherapy we did in March over Spring Break did nothing to alleviate it; although I had hoped it was a neuro-issue that they could resolve. There were no guarantees, and they were honest about it. We went to one naturopath in May and she asked if anything had changed to cause the tic, and I realized I had stopped giving Luke Calcium-Magnesium. So we started this up again and within two weeks the tic was gone. For a bit; but then it came back with a vengeance. Ugh. Another of her theories was that it was caused by a parasite, so we should give him some stuff to purge all the bad bacteria, etc. in his stomach. We didn't try this yet as we had an appointment with our homeopathic naturopath and wanted her opinion as well. Well. $800.00 later and she's pretty certain it's not a parasite and the stuff to purge the bacteria was not a good thing to give Luke... nor any of us, argh. Who / what to believe!? I've also been to a new physiotherapist who tries to help Luke calm himself (sacral cranial therapy), and that has done nothing to stop the tic. The family doctor also mentioned using calcium magnesium, but in the evenings, up to 600mg... and of course he could recommend a specialist which I think would entail medications... not ready to go down that road again. Some days he doesn't do it much at all, but other days (like yesterday) it was constant from 3-9pm... he even went to bed early because it was obviously exhausting him. He woke up today and there's more again. The one thing that helps when he's in a crowd is to give him chewing gum. It seems to distract and works sporadically. This battle with the tics throws me way back to the seizure days. It's a very dark time for me; watching your son tic and knowing he can't stop it (he says "I can't stop the tic"), and the best thing is to ignore (SO NOT EASY), and keep calm and relaxed about it. Arggggh. And there's really nothing I can do... what a horrible helpless feeling. Sometimes this journey REALLY SUCKS. I'm pretty sure he's been through enough in his short life (as have we all). Extra prayer and healing powers are welcome from anyone at this time. It's really hard teaching the boys to pray and pray about the tics and now it's October and our prayers have not yet been answered :(. Tough to keep the faith, but of course we do.

Aside from this issue, Luke is, as always, awesome. Particularly his speech. Some days it blows me away. It's a different relationship one develops with a child that can't talk. We communicate by physical hugs, tickles and staring into eyes; talking to him and knowing he understands, but realizing that while it all goes in, it's SO hard for him to get it out / organize his thoughts and words. Patience, patience and more patience. I wait calmly, and, more often than I realize I "just know" what he wants to say/do without him saying it. I still try to encourage him to "use his words". Gently coaxing. Joel gets to fill up the quiet that Luke is. Joel loves to talk, about everything. It's so great to hear him say out loud what he's thinking/feeling and to have that verbal communication with him. He's 7, and Luke's 10, so I often realize what Luke and I have missed out on as Joel develops naturally. Luke, is, however, also delayed so that means he's a bit behind on his development, so I continue to pray for our verbal communication to evolve, and it does.

Ways/words in which Luke has blown me away:
• He came up to me one day, outside and my hair was down/freshly washed. He touched my hair and said "Your hair is so beautiful". My jaw dropped and I made him say it again. What a sweet boy with wonderful words for me; to notice someone else and pay a compliment. Amazing.

• He will come up to me when he and Joel have been fighting, sit on my lap and say "I was angry with Joel" or "He hit me" or "I hit Joel"... and we talk about why and how to react next time. Our go-to for anger is to "walk away" and go to his room and punch a pillow (I read it in a parenting magazine once, works for Luke). Quite often now, when he's upset, he'll well-up and say "I want to talk about it", and crawl on my lap and we discuss his feelings. Usually this is from a place of super-sensitivity, as he will well-up often when I gently reprimand him (Just saying the word "don't" will make him sad)... For example, "Don't play with my iphone" or "Please don't make a mess"... he gets a little emotional when he's in trouble.

• He knows all the words to the songs on the CDs we play at night before bedtime (Frozen, Despicable Me). His speech is still not clear, but he sings along :).

• When praying together one night, I asked for prayers for my mom (she's having trouble walking) and Luke chimed in immediately after and said, and pray for Grandpa's sore heart?! At first I was like what? but then I realized he was praying for Dave's dad who survived a heart attack earlier this year. And he often adds, and pray that my tics go away.

• We're getting longer replies to questions: What's the best thing you like to do at Chris Rose? "I get to play all day". What do you want for breakfast? "Peanut butter toast with peaches." Where do you want to go? "I want to go to Menchies!" What do you want to watch? "I want to watch Spongebob Squarepants." What did you do today? "I did some work." What book did you read with Ivory (therapy dog) today? "The Little Lonely Beaver."

• One day I told him we were going to the deli for sandwich meat, and they always offer the kids a european hot dog. I said to Luke before we went in, to take the hot dog please. He said, "I don't want a hot dog"... I said (yes, I'm Dutch), take it anyway because I want it. He said "No." I said please!!! come on, take the hot dog... they don't give it to moms or big people. He laughed and said "Mommy, you're so funny!" He took the hot dog... with a smile at me, and then he ate more than half. We went outside and I had to ask him for it, and he smilingly didn't give it to me, I was only allowed a little bite. He's really got a great sense of humour.

• We went to a restaurant in the States that had busy stuff all over the walls and ceilings... Luke looked around and around and cuddled tight in next to me and said "I see reflections everywhere!"

Here are some other updates since January, and once again not necessarily in chronological order:
• We did a lot of neurotherapy again this year, and will do some Thanksgiving weekend again. They were able, in August, to finally do a brain map (Luke was not thrilled, but he hung in there). Now they have an actual printed map that shows the specific places they need to work on for Luke. This therapy is THE BEST, and MOST EFFECTIVE of all the alternative therapies I've tried. I wish we could do more, but we're limited to the annual autism fund ($110/hour with a technician or $160/hour with a program coordinator). There is a lady in Salmon Arm that does this as well, and a few of us moms will be contacting her to see if she'll come to Kamloops to treat our kids. The interesting thing about the brain map is that it affirmed Luke's issues: emotional sensitivity, passiveness, speech area had faulty communication with all other areas of the brain. It's exciting to have a new game plan, a much more "targeted" one. I look forward to seeing the results. The other beautiful thing is we met a young man who's been doing neurotherapy for 7 years and the difference in him was amazing (and he originally had 5 different diagnoses, along with autism, tourette's, and psychological issues). At 16 he was a very articulate young man, kind, funny and had ambitions (computer animation), as well as friends. Like Luke, it took him forever to read, write, and imaginative play, but his grandma just told me to hang in there.... it will happen for Luke too. So encouraging! She also told me a story about a friend's 40-year-old son that was non-verbal and was about to lose his job (because of it); so he tried neurotherapy and within a week he was talking. His sister dropped the phone when he talked to her for the first time. It saved his job. True story.

• Since Luke seems primed for speech, I decided "speech therapy" would be our other focus this year. I spend most of his autism funding on his one day a week at Chris Rose, his neurotherapy, and his piano lessons, so there's no money left. I had to do the "swallow my pride" thing (not easy for a Dutch girl) and asked family for help. Two of my sisters came through (in a big way), and I've been able to set Luke up with one-on-one speech therapy once a week at his school for this school year. Just so you know, 1 hour of speech is $100.00. You can do the math to realize how much these beautiful people donated. Everytime I think about it, I cry. Yes, I'm welling up as I write. Happy tears though. Yay.

• Luke continues piano lessons. We did not practise at all during the summer (very busy summer). But surprisingly, he pretty much picked up where he left off. One rusty first lesson, and he was back at it. New this year is Joel is taking piano lessons (with a different teacher). Joel's whizzing through his book, and it's so fun (for now) to make them practise after dinner. Joel's a bit more excited about it than Luke, but we use constant encouragement and praise and Luke's really, really getting it. Unbelievable.

• As I said earlier, we found a physiotherapist (in town!!!). She does sacral cranial therapy, which is just what Luke needs right now. She's teaching him to balance his own body. She's got some powerful hands and gifts and I trust her (despite not fully understanding the therapy). She communicates well with Luke and while sometimes he's agitated and fidgety, she can usually calm him down... and he doesn't tic while he's with her. A co-worker at the university goes to her as well, and swears by her magic hands. I booked .5 hour appointments weekly until December... and am so grateful that our extended health covers 80% of the cost. She is also the mom of a special needs son, and it was so comforting to find someone (in town!!!) that has walked where we've walked, from diets to homeopathy.

• Summer was, for the most part, amazing. First summer in years that we didn't have to spend too much time on therapies. Well, not 5 weeks in a row doing oxygen therapy like we did a couple times. While I did have to schedule 28 appointments for Luke (physio, speech, neurotherapy, naturopath, dentist, opthamologist, tutor, irlen specialist, family doctor), we also spent 28 days at our trailer on Face Lake. A nice balance. While Luke does try to play with the other boys, or at least "hang around them"; some are not so kind. Joel is gone all day, but will come back sometimes and bring Luke along or hang out with him for a bit. There is still the issue of having Luke find things to occupy / entertain himself. Sometimes he'll throw rocks in the water, or play on the playground equipment, or in the water... but other times we have to come up with ideas to keep him busy. His biking skills have not yet progressed to a point where he can keep up with the other kids, so he often runs alongside. He did get much better at staying on his bike and going up/down small hills without getting off his bike, so there is always some improvement. We continue to encourage him. He has a lot of physical anxiety. For example: in the swimming pool at my sister's this summer he sat on the edge for a long time (it's a rather large/deep pool with not much of a shallow end). He looked at me and said "I'm not going to drown?"... so aware of the bad things that could happen :(.

• He still cannot read. We saw the Irlen specialist in August and she really tried to get him to do the simple lens tests (different coloured lenses to help him see better). We came away after a 2 hour session with an inconclusive result. ARRRGGGHHH. She was kind enough not to charge me for her time, which is TOTALLY unusual in this alternative medical world. If you're wondering what irlen is, you can check it out at this site www.irlen.com. I've faced quite a number of skeptics about this, and it's been kind of discouraging and frustrating. I really believe Luke has a perception/perspective issue and the irlen website self-tests confirm he may very well benefit from a colour lens. He sees reflections everywhere. He's just not able to do the testing that might help him see better / reduce the reflections. More patience needed.

• Luke is still slowly leaning to print. He received an award at the end of last year for his improvement in his printing. It is still way behind, but he perseveres. The flip side is that he has a pretty good memory and is showing that he is retaining the academic studies that his assistant teaches him. He is also progressing with artwork... specifically painting. Luke always continues to improve and progress! So proud. He's latest saying is "I do it myself!"... and he does!

• Luke is in a special needs swimming program for the next 8 weeks. He's still quite skittish in the pool, and easily distracted. He was able to do the "rocket launch" and actually lift his feet off the ground; but he wasn't yet able to jump in the pool without touching my hands. He'll get there... patience, patience, patience.

• Luke is awesome at all appointments, very cooperative; even at the dentist. Every 6 months the boys go, and they try something new with Luke everytime. This time they were able to polish all his teeth, yay. He will be having an initial consult with an orthodontist as he's the lucky kid with his mom's crooked teeth (boo). Braces seem to be in his future, so I'm praying he'll be okay with them. Might be tricky to get them on, we'll have to see what they recommend.

• We are waiting for a call (November) from the Ministry for a service of one-on-one help where someone helps Luke with a very specific social goal. From what I understand he will get a few hours a week for 6 months to attain a goal. We have no idea what goal to set, but I'm looking forward to the extra (free) help.

• Luke does not currently have a tutor for this fall as I would have liked. The one we had in the spring (whom I thought was a long-time keeper), had limited after-school hours available. I was pretty disappointed. However, I recently spoke with a couple friends and there's an amazing woman who has tons of experience with tracking and visual therapy. So I called her and she's willing to meet with us towards the end of October. She is highly recommended, and sounds perfect for us. Let's hope we can work something out with her soon!

• Luke was invited to a birthday party this summer that involved going to a 3D movie (How to Train Your Dragon 2). I was quite worried about him lasting and coping with the 3D glasses. Apparently, he was more annoyed with my constantly asking "Are you okay?" ... and he wasn't the kid to worry about! Joel crawled on my lap more than once (scared) and took his glasses off constantly and was way more work than Luke... which was actually really fun for me :). I also want to mention Luke had a "real" birthday party this year. Because it's in July, no one is around so we usually have a small party at the trailer. But I checked and a lot of people were actually available on his birthday (July 26 Saturday), so we planned a minion-themed party complete with minion pinata. Luke was SO excited all week, and counted the days. By the time Saturday came around and all the kids were running amok, swimming (we got a small 8 foot pool for the Kamloops heat this summer), and trampolining, Luke was SO overwhelmed. He pretty much stayed inside and kept to himself, lol. It was cute. He did open his presents, but is still not fully engaged in the enjoyment of them (until later, when he can sort all the feelings out). Our friends were going to sleepover that night, but Luke and Joel ended up going to their house to sleep. I was pretty worried about him as he'd never slept there before. No worries again! He slept 12 hours from 9-9! Woo hoo! Obviously exhausted from all the drama. It was pretty cool to see him get really excited about his birthday.

• One great leap forward was Luke's ability to go up and down stairs every other foot (every other step). We were at my sister's and we all dropped our jaws as we watched him go up the steps two at a time! Two at a time! Holy toledo. And yay. We've been waiting for this one for a very long time.

Joel... rocks, and he talks and he plays imaginatively a lot. He seems very self-assured, but even just yesterday he cried and did not want to go into his classroom :(. He's still so little! His teacher mentioned Joel wrote in his journal "I want Luke to get rid of his autism"... so he's going through a huge realization of what his brother has and how different he is from other kids. There's been no real "bullying" or anything like that, but Luke is noticeably different on the playground and in the hallway. We explained to Joel that we can't get "rid of Luke's autism" (to be honest, he got the term from me... I've often prayed for God to helps us get rid of Luke's autism, ugh)... but that it's a "God Job", and it's not our responsibility. We do what we can as a family to help Luke progress and help him cope in life. He understood. Dave did a little online research about what to say, how to have the conversation, and he finally got a book from the library about "siblings of kids with autism." They've been reading a few stories every night for a while, and Joel enjoys the daddy time. Dave and I will each try to spend quality time with Joel. I don't have any regrets about how we've raised Joel so far, as I was highly cognizant of the potential for him to feel "ignored" and I have always had lots of quality time with him since birth. I know he feels loved and connected. We did sign him up for karate this fall. His friend does it, and we feel it's a good discipline/confidence booster. So far he really likes it and is committed. We wanted him to have something just for him, as in the past he's always tagged along with Luke for all the "special needs" sports (hockey/floor hockey/swimming). Joel has no academic issues, which is a blessing. He loves math, does great with spelling, and participated in a reading program with the local library this summer. He is quite savvy, and he keeps us thinking. He loves to "trick us" and loves candy even more.... so much so that he had to have major dental surgery for an abscess and cavities (ayiyiyi). He was SUCH A TROOPER at the dentist, so brave. They were even impressed. So proud :). Not sure what the teeth issue really is, as he brushes well twice a day, but it is what it is. He's got little floss sticks that he does now too.

I am doing pretty good, despite my anger at the tic-situation. I keep praying, and do my utmost to stay calm and not exacerbate the problem. Not as easy as it sounds. While I do try to "socialize" with people, I am having a bit of a hard time with it. I realize there's very little time in my life to nurture friendships, and that I'm perfectly fine with that. Dave and I talk often, and he gets it. He is still studying, and it's a difficult time for us with all the commitments. Because he needs lots of study time, I get to spend a lot of time with the kids and I really enjoy that. Otherwise time would fly and I would wonder how did the kids get so tall, and was my face at the computer working way too much to enjoy them? No. I enjoy them a lot. We spent 5 hours on Saturday on the beach having a fire, building a tipi, letting them get as muddy as boys could get. The sun was shining and it was awesome. My friend (who was with me) is as quiet as me (we're not small talk people), so a nice relaxing day. I have a few other friends that I get together with usually every two months or so as my busy schedule allows... and I like that I can just "pick up" where we left off. Sometimes, I have a hard time talking to people, and I'm pretty reserved about our life and struggles. I feel like I'm still quite raw some days, like if anyone hugged me I'd probably cry, so it's best to stand back. Most days, however, I'm happily in control and our lives are fairly awesomely normal. The boys are a true joy and I often tell them (and Dave) that I love them.