January 13

Trying to keep up the entries, and I know I'm down to twice a year, but life seems to be sooooo busy. My company, Signet Studio has been overwhelmingly blessed the last two years, which means constant attempts at worklife balance, which does not come naturally. I love my work, it takes a little effort to stop and look up and around at my life and re-focus on my family. Perhaps I hide in my work, but I also believe it’s not “work”, because I enjoy it so much. So, I’m going to say my work actually sates and rejuvenates me, and is a fulfilling outlet for my creativity. I work from home, so my life and world is flexible. I bring the boys to and from school, and to all their after-school activities which we try to keep to a minimum (I’m a big believer in down-time for my sons: Joel is socially exhausted at the end of the day, and Luke is mentally exhausted).

Anyways... the update on Luke...
Last year was monumental for him. There were lots of forward steps which is so great; but at the end of the year Luke stepped back quite a few steps which has been very discouraging to watch. I am very aware of how my moods are easily affected by Luke’s state; and I fight to stay positive as I’ve seen the pattern (two steps back, one step forward and sometimes two steps forward, one step back) for 13 years now, but it seems that the steps back have become more and more debilitating to me; even though I need to rationalize that a usually a big step forward is just around the corner. I am a chronically positive and optimistic person, but this latest regression has sent me where I’ve never been before... a bit of a “dark place”. As in all partnerships, one steps up while the other struggles, and so my husband has been phenomenal while I work on my spirit. I know I will get through, and this too "shall pass", and I rest in the peace that God is in control and “knows the plans and the hope” for Luke... and yet, I cannot shake the blue feelings. I cry sometimes; I am sad. Maybe I’m in a new acceptance stage as I am often uncertain of Luke’s future, and part of it is because despite the millions of therapies I’ve tried, Luke still cannot read or write and still cannot communicate on a deeper level. I continue to hope that we will one day have a conversation, and I believe we will. The heaviest burden is this lack of communication... I buckle under the weight of the responsibility of making health and therapy decisions for a boy that can’t even tell me he’s in pain because he’s constipated (and we don’t monitor his bathroom time so how are we to know?). We started a listening / audio program in August that he’ll complete in a couple weeks which is supposed to stimulate an area in the brain to help with reading (2 fifteen minute sessions per day of classical music)... and I don’t know if it’s improved anything. It was a boatload of money for the program, ugh. Maybe it’s helping, how do we know? Minor baby steps in printing and writing, a new baby step interest in letters and numbers, but still nothing amazing; and a son who can’t tell me if he knows it is helping him, or is it hurting him? Was it a waste of money? These are the struggles of parents that have children that can’t communicate. I really thought he would be able to read by now. I prayed he would be able to speak better... which he does, but the progress is unbelievably and painfully slow; a running-in-sand feeling.

Everything is a guess... What is he feeling? Is he trying to communicate something? Is he in pain? Is he experiencing hormonal changes as 13-year-old? Is he scared? Is he anxious about something? Does he feel okay? Is he tired? Is he hungry? Is he sad? I don’t know. My mother’s intution doesn’t seem to work with autism... autism is so different; no explanations. So I just love him. And keep trying to get him to talk more and more. And feed him; healthy foods. And try to find therapies that will help.

So I thought with all his anxieties (which we treat with homeopathy as opposed to medication... homeopathy is a slow and steady marathon, not an overnight success)... I would seek out a new physiotherapist that would help calm him with massage. We started a new therapy that works with releasing/relaxing the fascia. Luke enjoyed his first session with her, but he often gets giggly during the session which I think means he needs something to eat (who knows?). I have to remember to bring him a protein snack before the appointment to keep him calmer, less disruptive. We will start weekly sessions soon. He sees another phsyiotherapist as well, who is a male is more physical with him, working on core strength and hand strength.

We have also found an amazing chiropractor who was recommended by another autism parent. Dr. Rob assessed Luke and I’ve been saddened to discover that Luke has a very “stiff neck”... and cannot completely turn his neck to the left. He has always had difficulty bending his head backwards (when he was little he would often have seizures when he had to bend his head back to drink, I’ve often wondered why; and he won’t lie back in the bathtub or submerge his head backwards into the tub). This seems to me to be able to some-what explain some of his anxieties around being scared to “fall” when he bikes or iceskates. I would think having a very stiff neck would really impede him. There is a lot of talk (when you veer off the medical/doctor field and investigate alternative and naturopathic routes) about the birthing process: if it wasn’t natural, the babies are missing a critical step in developmental process. Luke and Joel were both c-sections. And Luke was “stuck” for quite a while. I am hoping the chiropractic treatments will realign Luke’s spine and neck, and give greater flexibility and improve his physical confidence. Dr. Rob even acknowledged that Luke would have difficulties processing his thoughts based on his body posture. His neck muscles are way overworked and overcompensating, and he has a few hip issues too. And since the spine is a map of the body, there is even an area of tension around the mid-spine that is connected to the stomach... which may explain the gut dysbiosis that Luke has struggled with since he was little; as well as the more recent constipation issue. So we pray again for this new therapy on Luke’s long journey. And I’m happy to have a chiropractor take care of Luke in these next couple years as he continues to grow taller. Our previous phsyiotherapist mentioned keeping an eye on Luke’s spine as he has the potential for slight curvature; so having Dr. Rob in Luke’s life now is a relief and a blessing.

Last summer, we also went to see our neurotherapist (who left Swingle to start his own business), and he used some new technical equipment to stimulate Luke’s brain and increase neural connections. The technology was remarkable and I was impressed with the follow up charts and graphs that outlined before and after treatments. At this time, months later, I am unsure of whether we’ll go back. I’ve since discovered a woman in town that does similar treatments and I am going to connect with her once our new financial contract begins August 1. I am thrilled to finally have competent services provided here in Kamloops, rather that having to travel to Vancouver all the time. I am overwhelmed with gratitude that this will be the first spring break ever that we will not be spending a week doing therapies in Vancouver. I can’t believe we can just have a two week vacation like everyone else!

The school year started with a new Educational Assistant. She’s been great, so that’s always a relief. I try not to worry, and I’m not a difficult mom, but change is stressful even for those of us not on the spectrum. Not having to think about how Luke’s doing at school and trusting that he’s progressing (I have regular conversations with the EA and the team at Social Butterflies), is a really, really, really big deal. The new BC curriculum allows for more flexibility in teaching strategies, and Luke seems to be more included and participatory in his Grade 4/5 class. He is part of the class community and the kids are kind and helpful. He is happy. I pray his delays do not deter him from moving along with this class cohort.

Luke and Joel have their own bedrooms now and Joel was suprised at how quiet it was at first... apparently Luke was quite noisy with his vocal tics or his quirkiness. They both love their own rooms, and Luke loves to listen to his music and play in his room (usually imagination play with his small stuffies... but “boy” play... they fight or are in trouble and need to be rescued or they are being handcuffed and going to prison, or they’re hurt and have tissue casts). We call this his “downtime” and we leave him alone to sort out and process his thoughts. Sometimes he gets a little carried away “frenzied” and we have to intervene and redirect him to watch a show or do some-thing different.

Luke loves tv now that we have an LED screen. With the old fashioned glass screens, when Luke was much younger, he couldn’t get past the reflections. This is still a concern and it may be for a long time. He sees reflections wherever he goes, first, before he can focus and see past them. I just realized when he often comes close to me and looks at my eyes, he’s often looking at the reflection in my eyes. It seems “real” life can be overstimulating for him. He looks into mugs of coffee or liquid and is scared he will be “sucked” into the reflection world. Reflections make him nervous. Reflections in the pool make him think he’ll be sucked in as well. When we took him to the holiday train in Savona, near Kamloops, the lights and loud music were overwhelming, so I realized he started watching it all in the reflections in my glasses. I think it’s easier for him, safer. As far as tv, we are slogging our way through Star Trek Voyageur; binge-watching. A great family time. I’m happy to say most of his tv show choices are now more mature.

We continue to be amazed at Luke’s amazing appetite. He loves everything. Best thing we ever did was take him off wheat, dairy and soy when he was 3.5 years old. He eats vegetables and spices, pepper and curry, and oysters and sardines. It’s unreal to not have to worry about feeding him, which is a pretty major issue for most kids with autism. And we were shocked to see that his table manners are better than ever. We “caught him” cutting his food with a fork and knife. He often helps himself to a paper towel when he spills or his hands are messy. He usually brings his dirty plates and cups to the kitchen sink. His chore is to empty the dishwasher every morning, which he does quite willingly. He likes to help cook; and sometimes makes his own breakfast: heats up tea in the microwave, makes toast and jam, reheats pancakes with butter and syrup. We continue to encourage his independence. It’s really nice to see.

He continues to absolutely love music; and plays his shuffle/speaker in his room; usually at night to fall asleep. He skips song after song until he finds his favourites: “Might as well go for a soda” (Kim Mitchell), “Bringing it Home” (BNL), “Tonight” (Tobymac), “Sugar Mountain” (Neil Young), and “Lukey’s Boat” (Allan Doyle, Great Big Sea). He knows all the words to all the songs, and there’s over a hundred on there. His speech is still a little difficult to understand, but we always recognize the song.

Joel... is growing up fast. It is not always easy to have a brother with autism, so we try to make sure he’s okay, and keep the lines of com-munication open. He would have liked an additional typical sibling, but he knows they are both miracles, and more wasn’t really possible for us. He is an energetic, tie-dye wearing, long blond haired hippie and owns it. I think he’s pretty cool. If only he would eat more. I’m on them both a bit more this new year for staying away from sugar and will hide all the candy in the house as they are getting older and bolder and helping themselves to snacks without asking sometimes. We try to monitor it, but also try to teach them healthy habits. Joel is a runner and a soccer player, so he is motivated to be a better athlete (I’m always impressed with how much water he drinks and how he prefers it over anything else). He’s pretty quick with numbers, but seems to be nurturing his creative side with making plasticine figures and we often draw together. Piano seems effortless for him, and he’s been asked to enter a piano competition in Kelowna in May, so that’s exciting. He went through a bit of a lonely time, but we’ve allowed more play dates (ugh, hate that term), and he’s had some sleepovers at friends. He also attends a local church youth group and he loves it (once a month). We’re all into geocaching and he came up with a great idea to buy dad a “family stamp” for Christmas, which dad thought was a cool gift. So, basically he’s a really nice kid. I am constantly aware, or trying to be aware, of whether we place too much burden on Joel to be all that and more... but he seems pretty even-keeled and well-adjusted. He’s pretty mature for his age, and I worry about him not being a kid, so I try to encourage the craziness and the dancing and the singing. Life should be fun! I am trepid about entering into “Phase 2” of parenthood (10-20 years), but I’m not going to assume the worst and hope for common sense and level heads to prevail in all the upcoming issues and concerns as both boys exercise their tween and teen independence. For the most part, our family is quite content, enjoying breakfast and dinners together everyday, watching Joel play soccer, going out for dinner once in a while, making memories like attending a Blazers game, geocaching, cross-country skiing or playing card or board games. Pretty typical stuff; relishing that this really is what life is all about.