It's just so much . . .

Wow, it's been almost two years since I last did a blog entry. And that's because I post pretty much everything on Facebook. Facebook is easier, quicker, and most people see and respond to it immediately.

But there's been so much going on with the boys lately that I haven't even bothered to post it all. I've just been trying to deal with each thing as it comes and keep us all going. I feel a need to get some of it out of my head, though. It's getting too cluttered in there. I'm absolutely overwhelmed and foggy lately. Thus, in the quiet hour two I have right now while the kids are at school (hopefully I won't get any phone calls) I'll try and type some of this out.

Let's start with Kevin.

Kevin has had a very rough start to the school year. He was sent home (suspended) three times within the first two and a half months of school. His number one struggle is dealing with other students in the playground and classroom.  Other students "annoy" him and it then escalates into fights, even with students that are supposedly his "friends." He also has angry outbursts in the classroom that involve tipping over his desk, yelling, and verbally threatening other students.  He was also refusing to participate in gym class and sometimes other work, and being disrespectful to his teacher and educational assistant. He HATES homework. He tries to leave his work at school and hide his books and agenda from us. When I do get him to sit and do homework, it's a constant whine/fight/debate. 

The school and I are both trying to pull in more resources to help Kevin. Thankfully, the school was able to get the Board's autism/behaviour team in for observation and suggestions by mid-November.  By the end of November, they had some new programs set up for Kevin.  I also communicated quite a bit with his teacher and the principals to give them some suggestions they might implement, which I decided might be helpful, after having some good discussions with Kevin about his triggers and so on. They made a chart for Kevin with a reminder list of "Positive Actions" they'd like to see him doing at school and "Negative Actions" he's known to do, but  should avoid. Every time he does a positive action, he gets a check mark. If he gets 15 check marks in a day, he gets 15 minutes of time to play on his school Chromebook at the end of the day. At the start, this worked great for Kevin. Computer time is the most powerful reinforcement for him, and he felt like he was being rewarded/earning something meaningful for his work.  However, we ran into difficulties closer to Christmas time as things got busy/chaotic at school, and his EA was off sick quite a lot. No one was really following the check mark guide. Another problem was that if Kevin was having a difficult time in the afternoon, his teacher would threaten to take away his Chromebook time (and sometimes did). In Kevin's mind, then, there was no reason to continue doing his work or making good choices if he already knew the reward would not be available. That was NOT supposed to be part of the plan. In fact, they aren't even supposed to take away any check marks for negative behaviour. What was earned, was earned.  Thankfully, since we returned from Christmas holidays, this seems to have gotten back on track.

On my end, we took Kevin to see his psychiatrist. As he's growing and heading toward puberty, the doctor suggested a medication increase for his mood regulation.  I'm not 100% sure this has helped, but I have seen a little better impulse control from Kevin and less major outbursts at school. However, I got a phone call from Kevin's teacher on Monday, saying she was worried about him. He seems very stressed and sad at school. She said he started crying during class because they were talking about God's love for us and Kevin told her, "I feel like everyone's against me, and no one loves me." Kevin has been diagnosed with depression in the past, but it's been a while since it's been a serious issue.  His teacher had a good talk with him and found out he's really worried about the Grade 6 EQAO testing this spring, and also he's feeling really down on himself.  She explained to him that EQAO is more to test how teachers/schools are doing, and that it doesn't affect his grades, which calmed him down some. (We've explained this to him many times, and I remind him of how Grade 3 EQAO was just fine, but he seems to forget). His teacher also reminded him of how many people love him and are there to support him (parents, teachers, principals, EAs, friends, extended family).

His teacher asked me if Kevin had any counseling available. The answer is, we're working on it. Last week, Kevin and I had an intake appointment at the Regional Children's Centre. What came of that is they are going to send out their autism/behaviour team to do some observation of Kevin in the classroom, and they will work with the Board's team to provide fresh insights and suggestions. It will probably be a couple months until that happens, though. Also, specifically in terms of counseling, Kevin is now on a waiting list for one-on-one sessions with their counselor who works with autistic kids having emotional/behavioural difficulties. Unfortunately, it will likely be around 4-6 months until that is available. In the meantime, at school they have a child-youth worker/social worker who is there a few times a week, and they've been sending Kevin to chat with her when he's having a particularly difficult day. One positive change that Kevin has mentioned is that, sometimes, they seem to be listening to his concerns and taking them more seriously at school.  For example, if another student in the room is particularly triggering for him, they might intervene and speak with that student while also providing Kevin a calming, sensory activity bin and a quiet place to regulate himself. It's not consistent, though, and he still comes home very upset on many days. But the big focus right now is teaching Kevin to advocate for himself, and seek assistance in a positive way before things get to the point that he loses control. It's a work in progress.

I don't really know where to begin talking about everything that's been going on with Ryan. Chronological order, I guess?

In September, Ryan started an exciting new activity: WETRA, the Windsor-Essex Therapeutic Riding Association. Equine therapy. He'd been on the wait list for over two years, and we finally got the call that a space was available for him. I was so hopeful. In the past, when we'd had him go on pony rides at the Autism Ontario summer picnic, he absolutely loved it, so I felt this would be a therapy that might really click with him. When we went to our orientation meeting, he loved the horses. He wasn't the least bit afraid, and wanted to pet all the animals. And for the first few weeks, it was great. He got a little over-excited sometimes when he was on the horse (flappy hands, lots of happy squeals), and they had to quiet him and teach him to keep holding the reins and keep his helmet on (safety issues), but I was glad we were there because he seemed to enjoy it. Even if I didn't see a lot of specialized "therapy" going on, I was willing to let it slide as long as he was out of the house, participating in a new activity that he was excited about. But suddenly, about halfway through the 10-week session, it all fell apart.  He cried every time we went. He started whining, and then crying, on his horse. He would lean out of the saddle. The most frightening time, I watched as he actually threw himself  off his horse; miraculously, the helper walking next to him made an awkward but magnificent catch before he hit the ground. We were all stunned. They immediately ended his lesson, and I took him home. In fact, the last four lessons of the session were ended by the staff after less than 20 minutes on the horse. They even tried to have me walking alongside him in the ring one time, but it didn't make a difference. Furthermore, I was not fond of his teacher's manner. She seemed very cold and detached for someone working with a group of 4 autistic children. She seemed to lack enthusiasm and didn't appear to be helpful or supportive when Ryan was struggling.

It was no longer fun. Ryan was getting nothing out of it. I was/am heartbroken. I had such high hopes for this. But alas, it has gone the way of other "fun" failed therapies we have tried: playing with food therapy; art therapy; Special Stars soccer; music therapy--all ended the same way, with meltdowns and disappointment. So that's that. We are no longer doing horseback riding.

School has been a roller coaster so far this year. At the start of the year, he had the same EA as he's had for the past year and a half, but a teacher who doesn't know him well (she's newer to the school). One thing they've really been trying to work on with Ryan over the years is his emotional regulation, and we've also noticed a major stall in all areas of academic development. His teacher was also expressing concerns about how he can be disruptive in the classroom with either his vocal stims or his outbursts of crying when he gets frustrated. At parent-teacher interviews, she admitted she didn't have experience working with children who are as severely autistic as Ryan. So, we decided it was time to call in the Board's autism/ABA/behaviour team to get them to observe Ryan and come up with suggestions on how to make him more comfortable in the classroom and reconsider what his learning goals/program should be. They came in November, and by the end of November, Ryan had a new direction for his learning program.

Really, a lot of Ryan's new program focuses on Occupational Therapy. OT is good for Ryan because it focuses on life skills but also physical input to his sensory systems that can help with his emotional regulation. In the morning, Ryan still does his academic table tasks like sorting, matching, fine motor skills, listening to stories with classmates, etc. In the afternoon, the focus in more OT and they have him doing things like learning to fold towels, pulling a friend in a wagon, kicking/throwing/running in the gym, etc. They've also started to encourage more participation in outdoor recess, which is something Ryan only did occasionally before. And when he did go out for recess, it was with the JK/SK classes because their area is more secure (small, with a fence). Another thing the team suggested was that Ryan spend less time on his iPad at school. His EA was using it quite a lot as a learning tool, but also as a calming tool when Ryan got upset. They and the teacher felt it might actually be overstimulating for him, and getting more physical activity would help regulate him better.

But the addition of all this physical activity necessitated a major change in terms of staffing. His EA (who was wonderful, adored Ryan, would do anything to help him, and knew him so well) unfortunately has mobility limitations.  The principal didn't feel she was the most suitable EA for Ryan's new program. Overnight, they switched him to a new EA. I was mildly annoyed, but I understood their rationale. Luckily, the new EA they assigned had been Ryan's EA in Grade 1, so we knew her well, she knew Ryan well, and she was excellent, too. So, I was okay with the change. I knew this new EA would be great for Ryan and work well with us.

Four days later, I pick up Ryan from school, and I'm met by anther EA. His new EA is off sick for a day. No problem; that's understandable. The next day, I show up to get Ryan, and he's with another, different EA. I say, "Oh, is Mrs.-- still sick?" This different EA stands up, offers her hand, and says, "Hello, I'm Ryan's new EA." What?! This is his second EA switch in less than a week! Now, I was really upset. How is that good for Ryan? We all know transition is hard for autistic people. They just changed up his program, now they're rapidly swapping out EAs?! I was so mad, but I kept my cool on the surface and politely inquired, "Oh, how long will you be with Ryan?" She replied, "I don't know; I hope the rest of the year!" [Groan.] Anyway, I was soon to discover that this EA swap was due to union issues: the previous EA had lower seniority than this EA, so she was sent to another school. Geez. Now, we had this lady who didn't know Ryan and we didn't know her. I was honestly freaking out.

Thankfully, after getting to know her and talking to the principal and vice principal, I see now that this will be okay. His newest EA has 15 years of experience working with kids with autism. Six of those years have been in our school board. And I only had to see her with Ryan a few times to realize how quickly they bonded. She's fantastic. She's giving him gentle pushes to test his academic limits, and he's thriving. For example, we had given up on PECS. Years of trying (since Summit Centre), and no progress. He had no real means of communication at school. We tried a few little iPad apps, but they didn't take either. However, as part of his new program, the Board's SLP said she wanted to keep trying Ryan with PECS. She explained that it could take as many as 5 years of consistent work with PECS for Ryan to master it. So, fine. I'd never heard that before, and since nothing else has taken either (we've also tried core boards and basic sign language), I agreed to let them try PECS again. Here's the main point I was getting to: Within a week, the new EA had Ryan consistently using 4 PECS in the classroom. Whoa. I'm impressed.

Furthermore, she has shown me some of the academic activities she does with him (sent me pictures and we've had discussions), and she's going above and beyond to find ways to include characters, songs, and items he enjoys to make it more engaging and fun for him. And speaking of inclusivity, she is the absolute BEST. Now, this I have posted about on Facebook, so I won't go into detail. But there's so many things he wasn't included in before, or that he might not have been included in for the future, if this EA didn't start speaking up. She wants Ryan involved in everything. His previous EA hesitated on many things because of her own mobility issues and also not wanting to push Ryan too hard. I understood that, but I think Ryan needs to stretch his limits a bit and open up his world more. This new EA made sure he went on the class field trip to the movies. She takes him out for recess in the main school yard with his peers and has them join in games of kick ball and toss and running with him. HE IS LOVING IT. He's always loved interaction with his classmates, and there's a boy and girl in particular who have really become buddies for Ryan. They were before, but now they're involved in his learning and playtime even more. It's such a great thing. The EA has also already given me a head's up about the Swim to Survive program the grade threes do in February. I knew it was coming this winter (Andrea and Kevin did it with the school in grade three, too), and hoped they'd find a way to include Ryan. Well, no longer hope; this time I emphatically stated that he will participate, and I can come in to help on those days if they need me. Overall, school is looking up for Ryan. He's still having some challenges adjusting to all the changes in his school program, but once he settles in, I think we'll see a lot of progress.

Unfortunately, at home, things have dramatically deteriorated with Ryan over the past month. Honestly, I don't know what it is about January. It seems like Ryan goes through a period of major agitation and meltdowns at this same time every year. However, this actually started right before Christmas Break. I wonder if all the changes to his program had anything to do with it? Anyway, Ryan is one miserable young boy.

He is almost constantly agitated. His meltdowns are severe. The worst part is that he has developed self-injurious behaviours.  He used to slap at/box his ears occasionally when he got really upset, and that has escalated. But the one that bothers me the most is that when he gets really agitated now, he makes a fist and bashes himself on the top of the head. I try to block it. I try to redirect him. But he does it so quickly and so viciously.  At the same time, he is shrieking. Not his usual whining or crying, but this awful, ear-shattering scream. It sounds like someone is tearing him apart. Do you know how terrifying and gut-wrenching it is to see your child so distraught? How horrifying it is to witness your child beating themselves on the head? Throw themselves down and writhe on the floor as if they are having as seizure? And the desperation and helplessness that you feel when it seems that nothing you do can calm them and ease their struggle?

The meltdowns used to happen a couple times a month. Now, they're happening a couple times an hour.

The only thing that seems to calm Ryan lately is car rides. I stumbled on this realization last month when I noticed that he'd start to cry as soon as we pulled in the driveway, at home, after school. One time, on a whim, I decided to pull back out onto the road and circle around the neighbourhood for 10 more minutes. Ryan settled down. Soon, this became an after-school ritual for us. The other kids also enjoyed this time of driving around for a few extra minutes, listening to the radio, to unwind after school.  Then, during the Christmas Break, Ryan's meltdowns started to ramp up. I was desperate to find a way to soothe him, so I tried taking him on car rides. It worked. The next thing I knew, Ryan was taking my hand and leading me to the stairway and down to get his shoes, "asking" for a car ride on a regular basis. Meanwhile, his meltdowns and self-injurious behaviour escalated to several episodes daily. The only thing that kept him happy was car rides. By the end of Christmas Break, we were doing two hour-long car-rides a day. And honestly, we probably could've done more. But gas is expensive, and we can't spend our entire lives in the car. So basically, we get two hours a day where we can all take a breath and unwind because Ryan is not screaming and hurting himself. 

And that trend has pretty much had to continue since school started back up. After school pick-up, we immediately set out for a 30-45 minute drive to get Ryan calm. We come home, have dinner, and do homework. Later, we do another trip of at least an hour to get him settled before bedtime. It's exhausting, all that driving, and we've had to adjust to this new addition to our daily routine. But at the same time, as I'm beginning to resent all this driving and inconvenience, it's necessary for all of us to get that calm, quiet time. Another good thing about the rides is Andrea and Kevin seem to love it. They always want to come with us. I think they find it relaxing, too. We've also had some good chats/bonding time during our drives, although if Ryan is at his most agitated, or I'm totally stressed out by everything, I ask them for a "quiet ride" and they understand. Most of the time, especially for our evening drives, we go down Riverside Drive.  Kevin loves the water, Andrea likes looking at the houses, and Ryan is happy because there aren't too many stoplights. I just find it an easy drive. So we start at home, go east down Riverside to where it ends at Brighton, loop around, go west until we're near the bridge, and then loop back to home. So much driving, but worth it for the peace.

Ryan also went to the pediatrician for his usual check-up yesterday. I told Dr. Morgan everything that was going on. She checked him over, and didn't have any concerns about his physical health. She did increase his Risperidone (for mood regulation) from 1.5 to 2 tablets twice daily, since he's grown a few inches and pounds since we last saw her. However, she said he may be developing a resistance to the Risperidone. She said to give the increased Risperidone a try for two weeks. If we don't see improvement in Ryan's agitation, I'm to book another appointment, and we'll investigate new medications for Ryan. It's only been one day, so I haven't seen much change except that he's falling asleep a little bit earlier, which is good.

Now, I know in the past Ryan has gone through weeks of distress over issues with his teeth. He did lose a tooth this week, and I think he might have another loose one. But his extremely unbalanced moods have been building over the past couple of months, and he's never had consistent self-injurious behaviour like this before. So, while the loose teeth probably aren't helping matters, I'm sure they're not the only cause of his suffering. I'm also glad to know that he's only got 3 adult teeth left to come out, and one is loose. It will be nice when that's not a factor anymore.

Side Note: Oh, I forgot to mention, the school had me sign some consent forms for both boys this week. They are going to be bringing their files to the school board's psychologist. Late last year, we had discussed the possibility of getting the boys re-assessed through the school board's psychology team. We are all unsure what direction their academic programs should take and both boys are in need of updated assessments. It would be lovely if I didn't have to pay out-of-pocket for a private one this time. 

I often have Andrea on my mind, as well.
Although Andrea has been doing well emotionally/psychologically, I still keep a close eye on her. Right now, she's facing some major transitions. She's a teenager. She's in eighth grade. She's nervous about starting high school: a bigger building, more people, more demanding work. She's a solid A/B  student, but she worries a lot and is hard on herself. I can see some of her OCD/nervous tics ramping up a bit.  She seems depressed sometimes. I try to talk with her and make sure everything's good, and we have really great talks sometimes. She's trying to figure herself out. I'm glad she has a supportive group of friends at school and they seems to be good kids. But thirteen is a tough age for anyone, let alone an anxious, sensitive girl whose home is often full of distractions.

As for me, I don't even know anymore. I feel like I'm just getting by. I'm perpetually exhausted and stressed. My brain feels so foggy and overwhelmed with "all the things." My nerves are completely on edge. I'm so jumpy. I'm short-tempered and have little patience. When Ryan starts screaming and hurting himself, I do my best to intervene, but then I go numb. Is it possible to be completely alert and stressed and yet numb at the same time? I function, but it feels like a part of me shuts down. There are so many times I want to cry, but I just hold it in. And then I'll cry over something completely ridiculous like a cute video I see on the Internet.

If I could ask for anything for my little family in 2019, it would be peace: for us all to have calm minds and bodies, so we can be happy together.