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.


 

"Spotted" Post

Thursday afternoon, Ryan had a very public meltdown and I was overwhelmed at the time, but the subsequent kindness of strangers moved me to submit a "Spotted" post (below) later in the evening.

But I want to add a heartfelt thank you to my in-laws for being a calming and helpful presence throughout our difficult times yesterday, too. Thank you to Stephanie for easing Andrea's concerns at McDonald's and helping me try to soothe Ryan as we waited in line to enter Adventure Bay. Thank you to Grandma Linda for keeping an eye on Kevin at McDonald's, and later giving Kevin a massage to help him relax when he got upset about the lineup to enter Adventure Bay. And a big thank you to Papa Fred for attempting to soothe Ryan in the restaurant, and then taking him out to the quiet space of the van and helping him to settle down. I was getting very stressed by the situation, and I'm sure your more relaxed energy was much better for Ryan. I know how lucky I am to have this amazing support team. ❤️

Understanding and Kindness at McDonald's

This afternoon, my in-laws took my family to the McDonald's restaurant on Dougall Ave. as part of a March Break outing. Suddenly, my youngest son, who has severe autism, became very overwhelmed by the busy surroundings and began to cry uncontrollably. We did get some unhappy or uncomfortable stares from people, but I want to focus on the people who showed understanding and kindness during this difficult time for my son.

First, to the lady who passed by on her way out the door, and gave me a sympathetic smile: Thank you. Even so simple a gesture made me feel less judged, and made me feel more encouraged to keep trying new outings with him.

Second, to the lady who came over to our table and talked to us: I thank you for trying to interact with my boy, and speaking so gently to him. I sensed you are a religious person, and although I am not religious myself, I appreciated your attempts to understand us and your offers of help. It was kind of you to offer my son a little religious medallion to hold. You also offered to watch my older son while I went out to check on my overwhelmed little boy who had to be taken to a quieter place by his grandpa. We had other family there to help, but this kind offer touched my heart.

Finally, to the McDonald's staff member who came and tried to help us have a happier experience: I did not expect that, and was so impressed at how above and beyond you went. You came and tried to soothe my very upset little guy. You offered him some toys, and then some ice cream. He ended up having to go outside, but you still brought 3 ice cream cones to our table, and I later brought one out for him and Grandpa to share. When we thanked you, you said you just wanted everyone to have a good experience at your restaurant. Thank you for showing such thoughtfulness. He did enjoy his ice cream (albeit out in the van), and his siblings got a nice treat, too. Thank you for making us feel welcome and accepted at your location.

Sometimes, it's very tough to bring our neurodiverse children out into a neurotypical world. I'm grateful that awareness and acceptance is growing. But really, something as simple as a kind look can make all the difference to us.

Andrea's Writing Assignment

The other night, when I opened Andrea's school agenda, something caught my eye.  It was a photocopy of a writing assignment she had completed. I thought maybe it was something I needed to sign, but then I started to read it more carefully.

Later, I asked Andrea why this was in her agenda.  She explained that the teacher had told them to write a journal entry about any topic they wanted.  The teacher was so touched by what Andrea wrote, that she made a copy of it and sent it home because she knew what it would mean to me. It's called, "Life with an autistic brother." It focuses only on Ryan, which I can understand, because her feelings for Kevin are a lot more complicated. (I've edited the spelling and grammar for clarity, but the words are all hers.)

Life with an autistic brother

Having a life with an autistic brother can have a lot of effects on you. Sometimes they are annoying, other times they are cute, but life is a lot harder living with brothers with autism. An example is how Ryan always screams. He screams very loudly; I can hear him from the other side of the house. It can get a little annoying hearing him scream nonstop.

But a good thing about him having autism is he does many funny, unpredictable things. Life is never boring with Ryan. He will make silly noises, do strange facial expressions, and overall just find a way to make the whole family laugh. He is doing something different every day, so it's fun to watch his reactions to new things and people.

Overall, I actually quite enjoy living with a heavily autistic brother. Yes, it can sometimes get annoying. But overall, I'm happy that my brother is the way he is.

***
I'm happy that she has such a balanced view regarding Ryan's autism. She's realistic about the struggles, but she also points out the things she enjoys about Ryan, too. Her teacher's written comment was, "It's wonderful to see how you appreciate his 'gifts.'" I agree. I know she loves her little brother very much, and she did mention how "cute" he is, but I am surprised she didn't mention how special she feels when Ryan gives her cuddles and kisses. The way she lights up when he's affectionate with her just warms my heart.

"But overall, I'm happy that my brother is the way he is." THIS. 💗

Toilet Training Setback

[I decided to write this one up on the blog because I know it's going to be a long one, with all the back story, hypotheses, and explanations. The reasons for sharing all these details are twofold: 1) to keep a record for myself and 2) because I know people will probably want to try and help by giving suggestions, so they can know everything we've already done so far.]

The title gives you the basic info. on this one. Yep: We've had a major toilet training setback.

So, here's what's happening: For almost 3 weeks now, Ryan has consistently refused to sit on the toilet. It came on suddenly, out of nowhere, and got progressively worse. It started with being fussy when he was sitting on the potty. Then he also got fussy when we were walking him to the bathroom. Then, he would only sit on the potty for a few seconds and do half a pee.  Then he started having outright panicky meltdowns in the bathroom when we tried to get him to sit on the toilet (shaking, crying, screaming, jumping up from the seat).  Then, he started slamming down the toilet seat as soon as we got his pants down, and the panicky meltdown ensued.  This now happens EVERY TIME we take him to the bathroom. Imagine going through this every 45 minutes.

NO. Just no. It's so stressful for both him and us.

Here's what we've tried: 

1. We talked to the school to see if they are having the same issue. Strangely, they're not. They keep writing notes to me over the past week, and saying everything is fine there with toileting.
2. Rod tried getting him in a good mood each time before going to the bathroom, by doing something fun or silly.  Then, he'd carry that fun or silly thing over into the bathroom visit. That worked for about 2 days, but then it was suddenly, completely ineffective.
3. I contacted our toilet training consultant at JMCC via email.  Our ABA session with her is officially complete, but she did say we could contact her if we need to.  So, yeah.  Her suggestions: increase the bathroom visit intervals to 2 hours to reduce stress on everyone (school interval is also about 1.5 hours, and things are going fine there); find a stronger reinforcement than chips/cheesies/bubbles (currently used); reward him for sitting on the toilet, even if he doesn't pee.
4. I came up with the idea of water play as reinforcement, since he loves that in the bathroom. The problem is, we didn't want him doing it in the sink because that's not a desirable long-term behaviour and would be hard to fade out after.  Therefore, she suggested a separate water bin he could play in while he sits.
5. Well, 4. didn't work because he went into meltdown as soon as we went in the bathroom. He would not sit.  So, I tried to reinforce him just coming into the bathroom by letting him play in the bin. He sobbed and played in it at the same time. Then, when I tried to close up the bin, he went into full-on meltdown mode. Yeah, that backfired.
6. We know he loves bath time. It makes him happy. We tried getting him to sit on the toilet before bath time. Nope. He was just furious he couldn't immediately jump in the tub like usual. We tried getting him to sit on the toilet after the bath. Nope: usual hysterical reaction. 
7. Finally, my consultant and I came up with the same thought yesterday (although it had been in the back of my mind during the past week or so): If he's fine at school, and not at home, maybe it's something about our upstairs bathroom/toilet in particular that's bothering him.  How about we try the downstairs bathroom instead? I tried it yesterday as soon as he got home from school. And miraculously, it worked! He came with me with no anxiety, sat on the toilet (albeit for only about 20 seconds), and did a little pee in the potty! He put on his pants, washed and dried his hands, and there was no sign on crying or anxiety. I was so excited! We were on to something! But then . . . of course there's a but then . . . every trip to the downstairs bathroom after that resulted in shaking, tears, screaming, slamming of the toilet lid, refusal to sit, and ultimately, meltdowns. 

  More of the back story

• This seemed to start around the time Ryan started getting sick two and a half weeks ago. He was vomiting off and on for one week, and had some diarrhea the next week.
• He has been extremely constipated since then. He has gone as much as 6 days at a time without having a BM. When he hits 4 days, I start dosing him with Restoralax, but it's taken up to day 6 for him to produce a BM.  I wonder if his intestinal/rectal discomfort is what's making him not want to sit? But then why is he okay at school? So, I've been dosing him like crazy the past few days to get everything cleaned out in the hopes of eliminating that issue as a cause (and because it's a problem in itself, right?). So far, I've gotten 3 BM's from him in the last 2 days, but seen no improvement in his behaviour with relation to the toilet. [Just to clarify, he does BM's in his pull-up; it hasn't really been a focus of our toilet training yet. We try to bring him to the potty if we see signs he has a BM coming, but he's sneaky that way. He usually hides in his room.]
• Although they haven't had any toileting issues at school, his negative behaviours in general increased after he returned from Christmas break. He cries a lot during transitions, and protests, stomps feet, cries, and tries to throw things when it's time to do his task baskets (his seat work). [He's still okay doing group work and recess.] However, we all think that's due to the extended holiday break and the fact that he was off and on with illness for the first two weeks back.  The last two days, they said they've seen some improvement in his mood and compliance, so it seems he's starting to get back on track at school.

Closing Thoughts

I want to cry.

We spent 6 months of intensive ABA toilet training therapy to get him to where he was at before this setback. He was doing fantastic. Sure, the program takes most families 8 weeks and we had to take to the max allowable time of 6 months, but there was progress!  We had made it up to 45 minutes between each potty visit, with an 80% success rate of being dry and peeing in the toilet! We were just about to move up to 1-hour intervals.

Then . . . THIS. Sudden, massive, inexplicable regression. 6 months of hard work down the toilet. Pun intended. Now, nothing of Ryan's is going anywhere near the damn toilet.

Rod actually asked me to stop the toileting program altogether. He saw how hysterical it makes Ryan. He sees how emotionally burnt out it's making me. He knows it well because he's been experiencing it, too, and I can see the stress on his face when it's his turn to take Ryan to the bathroom. Also, Rod's been gone away since Thursday morning, and won't be home till tomorrow night, and he didn't want me to have to go through this alone. But, when I emailed our consultant at JMCC and told her our situation yesterday, and said basically, "We're at the point of deferring the program for a while," she only replied she can see it's hard. Then she suggested trying the downstairs bathroom.

I have to, for myself, be able to say at least I tried all their suggestions.  And I did. But I can't keep putting my child through this much distress. I'm not exaggerating his reactions. He seems terrified of sitting on the toilet, like full-on panic attacks. And the ensuing meltdowns carry on as much as 15 or 20 minutes after we leave the bathroom.

As much as I don't want to let his progress go, I've decided to back off for this weekend. We're all at a breaking point here. I'll email our consultant on Monday to give her an update and see what she thinks our next steps should be.

Ryan's autism . . . a little progress, a sudden regression. It always seems to go this way. It is incredibly discouraging. The one area we focused on, put all this effort into, and saw some progress, and then it all disappears.  I can't help but start down that slippery slope of What if it's always going to be like this? What if he never maintains progress in any area of development? Are we just wasting our time and resources trying to work intensively on new skills? (I know, in my heart, that's never a waste. But will it really make a difference for Ryan in the long run? Or is it just stressing him out?) 

I'm kind of in a dark place right now. My heart hurts. I just want to see my Ryan calm and happy and, well, progressing.

Thankfully, the autism fates have given me a bit of a reprieve in other areas right now.  Kevin, who's been my major source of sleepless nights over the past year, has been doing well recently. Since he returned to school after the holidays, he's had mostly good days. He's doing 90% of his work.  He's interacting well with his teachers, EAs, and classmates. He's also been helpful around home lately. And Andrea continues to be my rock. She can be a sighing, grumbling pre-teen sometimes, but she's been trying to spend more time with her little brothers, and we've had some really great talks lately. As for Ryan, he's still my cuddly, lovable boy, who lights up the room when he's happy and excited. I just wish I saw a little more of the happy boy than we've been seeing in recent days.

Kevin's Psychoeducational Assessment Results

Yesterday, Rod and I went for a meeting with the doctor who performed Kevin's psychoeducational assessment last month, and she gave us the results.

I had been worried that Kevin would perform so well in the one-on-one, zero-distraction interactions that she wouldn't be able to see what we see on a daily basis.  Yes, she also had us and Kevin's teacher complete a pile of assessment questionnaires, but would our answers match up, and would she find them valid?  For the most part, they did. And yes, she did.

It was a bit overwhelming to receive A REPORT 22 PAGES LONG, but I couldn't have asked for anything more thorough or detailed.  This included over 5 pages of extensive recommendations, mostly for the school, but also for us at home.

Because the report is so complex, I'll try to stick to summarizing the most important points.

DIAGNOSIS

1. Autism Spectrum Disorder (Without Accompanying Intellectual and Language Impairment)--Level 2: Requiring Substantial Support
2. Unspecified Anxiety Disorder
3. Unspecified Depressive Disorder
4. Specific Learning Disorder
5. Impairment in Written Expression (Spelling, Grammar, Organization) - Mild to Moderate

My Comments and Some Explanations on the Diagnosis

1. I was really surprised, but also pleased, that Kevin is now recognized as having ASD: Level 2. His old diagnosis of "Mild Autism" would likely have put him in ASD Level 1.  I'm hoping the school will take his diagnosis more seriously now that they will see the increased need for supports. Here is a table which gives a basic explanation of the ASD Levels. (click on it for a larger view)
   
2. His psychiatrist had already diagnosed him with Anxiety Disorder. "Unspecified" simply means that there are lots of different types of anxiety disorders out there, and Kevin's symptoms don't all lend themselves to one particular type. It's good to have this formal diagnosis from a second professional and on paper, though.
3. The Depressive Disorder means yes, Kevin shows signs of depression, but again, his symptoms don't lead to one particular kind of depressive disorder.  I know, you're probably thinking, "Kevin? Depressed?" but remember depression shows itself in more ways than just the sadness and suicidal thoughts most people associate with it.  Kevin displays difficulties with "emotional distress" and sometimes "feelings of helplessness, hopelessness, and worthlessness." His "socio-emotional difficulties" are "negatively impacting upon his self-esteem," and he is "self-conscious." I don't like to talk about it much, but Kevin has had outbursts during his upset or meltdown moments where's he said things like, "I wish I was dead!/I'm just going to kill myself!/I can't do anything right!/I hate my life!/There's nothing good in my life!"  Those moments break my heart.  I honestly don't think he'd ever hurt himself, but just knowing he feels that way about himself/his life is devastating.  Plus, if you click on this link, and scroll down to "How Can I Tell if My Child is Depressed?" you will see that depression can show up in kids in other ways like irritability and difficulty concentrating, too. The doctor thinks that we can do a lot to help Kevin's depression by getting him more of the supports he needs, especially in the classroom. If he feels more confident in his learning and less self-conscious, it would ease his other issues.
4. The Specific Learning Disorder is interesting.  It doesn't exactly have a name. But what we see is that he has some kind of Visual Learning disability. His Visual Spatial Index Score on the Wechsler Intelligence Scale shows him to be in "Average" range; however, as I'll discuss later, this doesn't fit in with his incredibly high scores on the other parts of that scale. The doctor noted, "He encounters difficulties with analyzing and synthesizing abstract visual stimuli (e.g., completing visual puzzles in his mind)."   Kevin's Processing Speed Index also fell into Average range (the ability to process visual information quickly under a time pressure), but again, this doesn't match up with his superior scores on other areas of the scale. Kevin frequently "required extra time to produce his responses" and "his performance suggested some difficulties with his visual memory." 
5. The Impairment in Written Expression is reflected in Kevin's scores on the Wechsler Individual Achievement Test (academic).  In all areas he was in a 4th to 8th grade level (remember, he's in grade 3), except Alphabet Writing Fluency and Sentence Composition; both of those were at a grade 2 level. Once again, Kevin "required additional time to output his responses." He also "adopted a labour-intensive approach to writing." Kevin is noted to lack "a basic foundation for the conventions of written language" and "demonstrates difficulties with his fine motor skills and the mechanics of writing."  You might be thinking, "Well, he's only a year behind." But the doctor's summary explains the problem here very well: "It will be important to perform verbal testing with Kevin or have a scribe assist him with outputting his thoughts on paper to ensure an adequate representation of his abilities. Without ongoing remedial assistance . . . the gap between Kevin's level of academic achievement and that of his peers will continue to increase over time."  In other words, his writing abilities can't keep up with, and don't reflect, his level of intelligence. And it will only get harder as the demands of schoolwork increase as he gets older.

EXECUTIVE FUNCTIONING

People with autism often have deficits in what is called Executive Functioning. Here's a good page with information about understanding executive functioning issues in children. Basically, executive function "describes a set of cognitive abilities that control and regulate other abilities and behaviours." The rating scales we completed for Kevin's assessment looked at "attention, emotional regulation, flexibility, inhibitory control, initiation, organization, planning, self-monitoring, and working memory." The results suggested "significant executive functioning difficulties" at home and 

and "minimal executive functioning difficulties" at school (although many of the ratings the teacher gave on this scale contradicted similar ratings she gave on other questionnaires, baffling the doctor; maybe the teacher was trying to focus on his best days?).

Anyway, in both home and school environments, Kevin shows "significant difficulties with Emotion Regulation, Flexibility, Inhibitory Control, and Initiation."

To summarize, "Kevin's scores suggest that he may have difficulty handling his emotions and recognizing the consequences of his reactions, especially during highly stressful situations ..."  Well, we knew that!

The results also show that "Kevin may have difficulties beginning, starting, or 'getting going' on tasks, activities, and problem-solving approaches appropriately." However, in the doctors' closing notes, she made an interesting point that I hope Kevin's future teachers will take into serious consideration:  "It is important to realize that deficits in executive functioning can often appear to reflect non-compliance or disinterest in a task or activity on the part of the student, but that for Kevin, this likely is not the case." It's a new perspective for me, as well. I know Kevin's behaviour always has a cause, and I try to keep that in mind, but I wasn't aware how much executive functioning deficits can impact daily life. However, there are skills which we can teach Kevin to help him compensate for his executive functioning difficulties. The doctor put some ideas in her recommendations.

STRENGTHS

It's time to focus on Kevin's assets.

But can I say just one thing here? This kid is complicated. To quote the report: "Kevin's Full Scale IQ  . . . cannot be meaningfully interpreted as there was too much variability among his index scores. A better representation of Kevin's overall intellectual ability [includes focusing on the individual] estimates of his abilities in . . . five areas." In three of the five areas, he is in Superior/Very Superior range.

To sum it up: My child qualifies as both gifted and having a learning disability.

But back to the STRENGTHS:

• Kevin has a Verbal Comprehension Index Score in the 99th percentile--Very Superior range.     "[H]e has superior abilities when using words to express his ideas and to solve problems," and "is able to successfully reason about information that is both simple and complex."
• Kevin has a Fluid Reasoning Index Score in the 95th Percentile--Superior Range. "He has superior abilities when comprehending tasks that involve patterning and whole-part relationships and understanding the concept of equality among visual objects. He is able to effectively use his quantitative reasoning skills and follow a logical pattern through to another conclusion."
• Kevin has a Working Memory Index Score in the 98th percentile--lower end of the Very Superior Range. "He has superior ability when he is required to memorize new information and hold information in short-term memory and when he is required to concentrate and manipulate that information to produce some results."

Academic Achievement: [keep in mind he is currently in Grade 3]

• Word Reading: Grade 7-8
• Pseudoword Decoding: Grade 6
• Reading Comprehension: Grade 5-6
• Spelling: Grade 4-5
• Numerical operations: Grade 4-5 

As a lead-in to the discussion of the doctor's recommendations, I thought I'd share this paragraph she wrote under Kevin's Academic Achievement results section.  It is extremely important to be aware that he can only access his strengths when the proper accommodations are in place:  

"It is important to note that Kevin often required constant repetition and redirection during the academic portion of the assessment session. He encountered difficulties with working quickly during independent work. Without one-on-one support and redirection, his scores would have been significantly reduced. [emphasis mine] This has significant implications in terms of the amount of information he will retain in the classroom setting."

RECOMMENDATIONS

As I said at the start, there were over 5 pages of detailed recommendations for both school and home. To keep it brief, I'll only highlight the ones that really stood out to me:

• It is essential that he have the following assistive technology: personal laptop computer, printer, scanner, and associated software (voice-to-text, text-to-voice, Word Cue, Smartideas, etc.)*
• consultation from an Occupational Therapist; assess Kevin's difficulties with fine motor skills and provide him with appropriate treatment*
• continued assistance from a Speech and Language Pathologist for articulation and fluency*
• extra time to complete written tasks and copies of information that is written on the blackboard*
• It is important to check for comprehension when providing Kevin with instructions to complete a task, especially if that task is more abstract/less structured (i.e. have him paraphrase instructions and information in his own words before beginning the task).
• For executive functioning, teach Kevin problem-solving processes in which he learns to describe problems, set a goal, establish ways to reach the goal, and evaluate the outcome.
• He would benefit from having pictures paired with words whenever possible.*
• Kevin should have a multi-sensory learning experience
• recognition of Kevin's strengths, interests, and accomplishments will be critical to his ongoing motivation; his efforts should be liberally recognized and reinforced
• he would benefit from individual therapeutic interventions to assist with self-regulation, emotional control, social skills training, and provide him with coping skills
• Kevin's difficulty regulating his behaviours and emotions should be addressed through development of a specific behaviour plan* 
• Do not expect Kevin to acknowledge he is sad, frustrated, or upset.  In the same way he has difficulty perceiving others' feelings, he struggles to identify his own feelings.  Visual aids (like a faces chart) would help him identify his feelings and advocate for help.
• would benefit from accommodation often provided for children with anxiety: preferential seating, frequent cueing, increased time to complete asks, incentive programs, removing pages from workbooks, textbooks, etc. to present one at a time to prevent him becoming overwhelmed
• Kevin worked well with one-on-one support and was noted to persevere with encouragement and positive feedback.  In other words, he needs an Educational Assistant (EA) nearby at all times.* He needs constant repetition of instructions and redirection to stay focused on the task at hand.
• We should request an IPRC (Identification, Placement, and Review Committee) meeting for Kevin.  It would make his identification formal and any accommodations requested legal and binding. However, we would likely have to fight for that as the Catholic school board no longer does IPRCs.
• Similarly, we must insist on a formal IEP (Individual Education Plan) for Kevin.* He requires many accommodations to be successful in school and should be provided with as much assistance as possible from the Learning Support Teacher. 

*These are things that are not currently in place for Kevin, and that the school is obligated to provide, given his diagnosis and needs.

At the meeting with the school that I requested last month, I emphasized the need for a behaviour plan and an IEP.  They were going to formulate a behaviour plan, but were hesitating on the IEP.

I am hoping that, when presented with this new document, they will read it THOROUGHLY and take it SERIOUSLY, and begin implementing all these recommendations. Now that we have a new, current, and very thorough assessment in front of us, I see no excuse for them to deny/minimize Kevin's needs any longer.  

I feel it's time to go into battle. No more timid, nice-nice mama. I can see now, very clearly, how Kevin's deficits are holding him back and making his time in the classroom very difficult for him. My child is GIFTED. We need to ensure that he is able to harness those gifts and reach his full potential. We need to make his classroom experience as positive as possible. In doing so, we can increase his comfort level, decrease his negative self-image, and let him shine! <3

Ryan's Assessment Results

I finally received Ryan's results from his "post-treatment" neuropsychological assessment for the time he spent at Summit Centre. (The assessment was at the end of November!) I've been really anxious to see, in official numbers, what progress he was able to make over the 2 and a half years we worked with them doing intensive ABA therapy, between the Unity program and the STEPS program.

During the assessment, the testing person asked me a question which made me pause and reflect, and I was hesitant to answer, at first: What age do you think Ryan is at, cognitively and developmentally? Considering he's your third child, in comparison, at what age would you place his skills?

I wasn't sure how to answer that. Wasn't that why I was here? To get a professional's opinion on this?

I replied, tentatively: "A year to eighteen months?"
It turns out, I was pretty much spot on.

The Big Numbers

I'm going to get into some detail here, as much to organize my own thoughts as anything else.

MSEL Early Learning Composite Score, 2013: represents a developmental level of 7 months old
MSEL Early Learning Composite Score, 2015: represents a developmental level of 12 months old

Adaptive Behaviour Competence Score (VABS-II), 2013: places his overall level of functioning in the low range; equivalent of 8 months old
Adaptive Behaviour Competence Score (VABS-II), 2015: places his overall level of functioning in the low, moderately deficient range; equivalent of 13 months old

According to both of the major assessment procedures, Ryan gained about 5 months of development over 2.5 years of intensive ABA therapy.

More Detailed Numbers/Comparisons (in age equivalents)

MSEL

Visual Reception: 2013--7 months; 2015--11 months gained 4 months
Fine Motor: 2013--8 months; 2015--16 months gained 8 months
Receptive Language: 2013--9 months; 2015--14 months gained 5 months
Expressive Language: 2013--7 months; 2015--8 months gained 1 month

VABS-II

Receptive Language: 2013--9 months; 2015--6 months LOST 3 months
Expressive Language: 2013--5 months; 2015--8 months gained 3 months
Written Language: 2013--22 months; 2015--no change
Personal Skills: 2013--6 months; 2015--20 months gained 1 year 2 months
Domestic Skills: 2013--7 months; 2015--10 months gained 3 months
Community Skills: 2013--<1 month; 2015--no change
Interpersonal Relationships: 2013--6 months; 2015--no change
Play and Leisure Time: 2013--8 months; 2015--no change
Coping Skills: 2013--10 months; 2015--2015--7 months LOST 3 months
Gross Motor Skills: 2013--18 months; 2015--28 months gained 10 months
Fine Motor Skills: 2013--11 months; 2015--18 months gained 7 months


My Thoughts

Although I'm not surprised by the results, I'll admit I was hoping to see more gains.  I also do not agree there has been no change in the Play and Leisure Time and Interpersonal Relationships categories. I feel like I've seen improvement there. I also don't see how he's lost skills on the VABS-II Receptive Language and Coping Skills categories.  Maybe there's more of a disparity between what's expected at his chronological age now, since he was only 3 at the time of the first assessment and almost 6 at his most recent one?

This brings me to another point. While I'm happy to see so many areas with at least some gains, you've got to keep in mind that he was only 3 years 2 months old at the first assessment and was 5 years, 9 months old at the second assessment.

In 2013, he was 2 years, 5 months developmentally behind for his chronological age.

Now (2015), he is 4 years, 9 months developmentally behind for his chronological age.

The developmental gap has not diminished. It has basically doubled.

I had hoped these results would give me a clue as to where to go from here in terms of Ryan's therapies.  It turns out I'm more confused than ever.  Did he make gains doing ABA? Yes. Did he learn some new skills? Yes. Is it worth continuing to pursue intensive therapy privately? That I don't know.

The doctor's summary of "Implications" at the end of the latest assessment report has changed very little from the one in 2013. The main points haven't changed, and the wording is essentially the same:

• "Ryan will learn best in a highly-structured environment . . . consistent expectations . . . clearly defined rules . . . modification and accommodation . . . . Verbal directions should be clear and concise . . . visual aids and extra cueing . . . The use of nonverbal (pictorial, gestural) cues . . . tasks should be concrete and involve an active hands-on learning . . . provided with ongoing corrective feedback regarding his performance . . ."
• "Focusing on basic compliance tasks (e.g., working at a table, transitions, waiting, taking direction from a non-familiar adult) is imperative and will eventually facilitate his ability to participate in any future placements he attends outside the home (e.g., daycare, recreation program, school)."
• "It is important that Ryan receive support in developing his receptive and expressive communication skills, social skills and daily living skills."

Well, yeah, we have been doing all that since 2013, and we continue to do that at home and school. But again, the question is, should we be doing this as intensive therapy sessions guided by ABA professionals, or should we simply use the tools we've already learned to apply in incidental learning at home and school?  Is the incidental learning enough?  Would he make more progress back in a setting of intensive, one-on-one therapy with professionals? 

I don't know.  It took us 2 and a half years to gain 5 months, and we're still almost 5 years behind.  

What I do know is that I will never give up on him.  I will never stop trying to teach him the skills he needs to interact appropriately with others and take care of his daily living needs. It's more of a question of how hard we're going to push, what approach we're going to take, and what is best for Ryan emotionally and physically.

I stepped out of the room mid-blog, and came back to find Ryan inspecting my work. ;)

Ryan: Where do we go from here?

Okay, so much on my mind lately and I just need to vent. I'm not really asking for advice here; I'm just sharing my thoughts.

So, Ryan.

Where do we go from here?

I'm still waiting on his discharge assessment results from Dr. Saunders after leaving Summit Centre. Yeah. That was in November, and I call every few weeks to see if they have them yet.

I will admit, I have dropped actively doing his ABA programs since he started school full time. There's a few reasons: 1) to give him to adjust to full time in the classroom 2) because I really wasn't seeing major progress with his ABA programs 3) because he seems tired after school, and I don't want to burn him out with full time school plus ABA programs.

I've been questioning myself constantly about what the next step should be.

Two things in my mind stand out as important general goals: 1) self-help/daily living skills and 2) establishing a functional mode of communication.

The question is, What's the best way to go about this?

I know Summit Centre would say get back into ABA immediately. There WAS progress. But it was tiny. And incredibly slow. They'd say use PECS. But we never got past Phase 3. And it only worked in discrete trial ABA sessions; it never carried over to the natural/incidental environment with Ryan.

At school, they've been trying the core board for communication. The only picture Ryan will tap is "more."  It hasn't carried over to anything else, and he already has a sign for "more." That seems redundant to me. I think it does to Ryan, too, because he would get mad and sign more repeatedly while ignoring the core board with me.

I keep reading/seeing more and more stories about nonverbal kids and adults with autism who have learned to communicate. When they express their thoughts and feelings, I get so anxious for Ryan. These people are highly intelligent, but before they could communicate, you would never know it. I wonder, What is Ryan thinking? Does he understand everything I say? Does he feel trapped in there and long to share his thoughts with the world? Is he learning from his environment?  Is he picking up on classroom lessons, like letter and number recognition? Is he learning things from watching educational kids' shows?

WE JUST DON'T KNOW!

So far, we have no real measure of Ryan's cognitive capabilities. There have been no eye-opening breakthroughs, and all assessments to this point have suggested significant cognitive delay, but that's because he can't respond, so HOW DO WE REALLY KNOW?!

That's also why I don't know where to go from here. I don't want to waste years and resources and put stress on Ryan and ourselves for therapies that are doing little to nothing. But I don't want to settle into acceptance of things as they are when there might be potential for a major breakthrough with him ... If we could just find the key.

I am so confused. I am so frustrated. I feel like I'm groping around in the dark in an unfamiliar place trying to find that light switch.

Should we go back to what we know (ABA)? Should I start trying harder with the core board? Should I switch it up and start investigating things like Pivotal Response Training or Rapid Prompt Method?

I don't know. I just don't know. I feel overwhelmed.