"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.