Fairy-Wand-A-Waving

Well, October is over and we're on to November already. Time flies when you're having fun... or when you keep going up and down and up and down!

Awesome artistic talent
right? No help from me.

October has had some glitches. Thanksgiving was a bit disastrous. We packed in too much. Too many commitments with hoards of people and long car rides. Stupid. Stupid me. How many times do I have to publish this to a blog to learn my lesson? Next time... Not happening! It causes Sienna too much stress and it takes too long for her to get back on track afterward. Hallowe'en, on the other hand, was great. She was awesome, loved every minute, and even thanked me the next day for taking her trick-or-treating. Heart. Melted.

Unfortunately, the toileting issues are back again in full force. Or should I just admit that they "continue"? We are averaging 3 accidents per day. We had a few days where there were none, but those were also the days when there were no BMs at all. This toileting thing has completely stumped me! With the training I've had and experience with students, I feel like I have a good handle on the quirks and expectations Sienna has in regard to transitions and noises and challenges and what has led to the meltdown... but I can not figure out the toileting! We've been on a waitlist for ABA services from Kerry's Place Autism Services for over a year now. ABA stands for Applied Behavioural Analysis. So what they do is analyze a behaviour and help us to figure out how to change it. They come into our home and help us out and can access school staff as well if they are willing. Well, I've bugged and bugged this month. Sienna is five and a half. She will be heading to grade one next fall and I'm concerned for her that she will be teased if we don't get this under control. And I also know how long it takes for Sienna to master a skill. I remember last year I had visuals up with pictures of her putting each item of clothing on to get ready for school. I left them up for about 6 months and then after all the hard work of helping and eventually not having to be in the room, I took them down. Well, wouldn'tcha know it, but she completely stopped dressing herself within a week! A week! There was nothing I could do to get her to dress herself. Lo and behold, the pictures went back up and we started all over again. They have not come down since. And still, there are many days that she insists that I am in the room while she gets dressed.

Toileting, on the other hand, is more of a sensory issue. There are far more invisible steps that she will have to learn. She has to first, recognize when she needs to go. Second, stop whatever it is that she is doing and actually walk to the bathroom. That's hard... EVERYTHING is more fun than going to the bathroom. And part of what makes Sienna establish and master a skill is using motivators. Problem is, she has to take the initiative to leave whatever she is doing. Although I am fairly psychic (LOL), I cannot feel her bowels within my body. I cannot say, "It's time," and stop the activity and encourage/motivate her to walk to the bathroom. Having said all that, after bugging and bugging, I finally have an ABA consultant coming to our house next week to help us figure out how to do things differently. You can't imagine how excited I am to talk about poop with her!!

Another challenge I have is that although I have asked the school specifically to give Sienna a cookie every time she has a BM on the toilet (regardless of accidents), they don't. I have a home communication sheet with bathroom times (successes and accidents) and some other information that we share between us and staff. And unfortunately, I have received a note here and there saying, "Gave her one cookie today, only when she asked". Well... that's not what I said!! Give her a cookie EVERY TIME she goes! So, that is a stumbling block. Because a child on the spectrum is not likely to ASK for anything. But a child on the spectrum WILL LEARN by consistent rewards. At home, our family gives her a cookie EVERY TIME she goes on the toilet, no matter what! And, yes, a cookie is the reward. Don't judge. I've tried everything. Cookies work.

And we've learned that sensory breaks (like quiet time, spinning, rocking, jumping, deep pressure, large muscle use, textures, etc.) contribute positively to Sienna's ability to control her atypical behaviours (like jaw-sliding, hand-flapping, noise-making, grunting) and to her body awareness. To me, body awareness is the key to figuring out when to head to the bathroom. Last year we established that Sienna would have three scheduled ten-minute sensory breaks per day in addition to the various sensory activities a typical JK/SK class does. There are SO many things that I need to communicate to the staff, that I just have to trust that they remember and consistently follow what we agreed upon. So, I guess it's time to review all these things with the school staff again. This time, just for a reminder as to how a bathroom break should go, what words to use, what prompts to use, and what reward to give. It's exhausting. Sometimes I think these things have changed because people think it is in Sienna's best interest to develop the skill more quickly, and therefore eliminating rewards will be the first step. Understandable if you have not lived with her for the last five years so you don't understand the effort we have put into this for almost 4 years now and/or what it takes for her to learn a skill like toileting.


So, I'm gonna go in with my fairy-wand-a-waving in the hopes that people will magically remember what I have to say. And this time, the ABA consultant will be there to help me out so it's not just crazy-parent-again-Julie.

Back to School 2013

We prepared for school in a few ways... We started a countdown on Sienna's whiteboard chart 10 days ahead, visited the school, classroom, bathrooms, ECE and principal, and reviewed a book of classmates' pictures from last year. We also talked about the bus and her new routine of going to before-school care. I also made up a visual for what we do after school so Sienna knew what to expect in that time frame before going to bed. I didn't want to talk about it too much because I was thinking it might cause her more anxiety. After her first week, it seems as though we did the right things. She's had few meltdowns and some hit and misses with the sleeping and pooping. Here's a recap.

Excited every day to go to before-school care. Great first 3 days for toileting: 2, 0 (!!), 1 accident(s). Friday... Not so much. 6! Only a few meltdowns this week. Up 2 nights with night terrors. 

Some amazing triumphs?... Cleaned off her own dinner dish and put it in the sink without being asked! We rarely even ask her to do that!! Mornings have been relatively smooth. We established that after dressing, bathrooming, and tooth brushing, she will watch one show (from pvr... because if we ever had to leave partway through a show, not gonna happen!). So although it was not always what I wanted to do every day in the summer, it seems to have paid off. She loves the before school care provided by the YMCA and I do too. The young lady who runs it seems to have a very structured and organized system and also appears to understand Sienna's needs well. What more could I ask for? Makes me hopeful for next summer's YMCA camps. I hope they will suit our family's needs! 

Week 2 has been just as good with mood and sleeping if not better. Just a few meltdowns and only one night terror. Toileting... Still a mystery. Today is Friday and there were 4 pairs of soiled underwear in her backpack when she got home and another accident just after I sent her to the bathroom! I asked her if she had clean underwear and she said yes and I really think she believed that. I don't think she evens knows sometimes that she's gone...

Tonight (Friday) she had quite a meltdown when it was shower time. Having said that, I'm so glad she has finally adjusted to showers and not baths. Gross! You can imagine how "un"clean a bath might be for her. Anyway, the meltdown was trying to move her from the iPad to the shower. Problem is, if you're not very specific as to the number of videos she can watch before moving away from it, explaining what will happen after the last video, and getting a verbal response, you're in for it. I have said many times that the ipad is not to be used after dinner. Her dad and I have differing views on that topic. But that's the way the cookie crumbles... Can't always agree.

I sent a note this week to the EA who takes her to the washroom to find out the times she is going and it's the same as last year and what we tried to stick to in the summer. I'm putting her back on the stool softener because after looking through our school-home communication sheets, she has had very few full, normal sized BMs over the last 2 weeks. We'll see what happens.

All in all, I'm happy and very proud of her. In comparison to last September, she has come a long way. And I love that she goes to school and all the kids say hi to her. There is a group of grade 8 girls who are always there when I drop her off and they're so sweet and friendly. It's a nice feeling as a patent to know she is adored by lots of people... Other than me! 

A is for August

Okay so it's August. And why in August do the symptoms and expressions of autism seem to increase? Is it A for August and A for Autism? Is it the weather changing? Is it that Sienna is finally adjusting to the lesser structure and opposing it? Is she anticipating school? Am I not providing her with enough of the sensory input that she needs?  As her three year old brother would say..."What the heck?"

It is part way through August and I wanted to write a daily journal to capture the whole month so I don't think I'm crazy at the end and that I've imagined all these things... I have to go back a few days so I'm going to do my best. I'm just going to summarize the first week of August and from there on, I will try to log a few things daily...

I've snuck blended blueberries
into GF/DF/EF pancakes under
the disguise of the pancakes
just being "new blue" pancakes.

Sienna has been doing great with the morning routines. I hope we have that one down pat for when school starts up again... She needs prompting for each step of the routine, but the timeline has shortened a lot, even from the spring. I could probably get her ready in a half hour now. It helps that I pre-make her breakfast. She eats pancakes every day and will not vary from that unless she absolutely has to - which is only when I have no pancake mix left. A couple of times, we were running late to daycare and she was okay with banana bread in the car on the way instead of the pancakes. That was surprising to me and hopefully if it comes to that in the fall when she goes back to school, I can eek a few of those mornings out of her with no meltdowns.

It was really cute one day when we went over to the neighbour's after seeing two  classmates go by on their bikes. The boys are in Sienna's grade, one in her class. She met us there with her dad and walked right over to each boy in kind of a nervous way (fists clenched, tiptoeing, with trepidation) and said "Hi 'so-and-so'". Now, to the average parent of an average five year old, that seems normal. But for us, that was a big step. I couldn't help but have a huge proud smile on my face watching her do that. Way to go my girl! I was sure to mention it to her later.

She's been to daycare three times. First time, no accidents. Second time, one accident and a time out for swinging a skipping rope at a boy because he wanted to play with her. Third time, three accidents. I'm reminded of last August when she was holding her bowels so much that we ended up at emergency because she was so full that she was puking in the night. When I say "accident", I mean a teaspoon of poop in her underwear. This means that she is holding it. She's not constipated. That's what people always think. Her BMs are never hard or what you or I would consider uncomfortable at all. When she does go, they're soft. It's just that she doesn't go enough... She builds it up insider her intestines. So, I'm starting to put her back on the daily stool softener again. I was hoping to eliminate this "extra" by adding as much fibre to her diet as I can - which I am sneaking in as much as possible. But if it's a matter of her bowels just not doing their job paired with her resistance to doing it, then it is what it is and we start back on the stool softener. After two days of an adult dose, one tiny, soft poop... Interesting... (well for me anyway!... Gross right?!)

Sienna has begun sleeping poorly again, up a couple of times before midnight with blood-curdling screams. I sometimes wonder if she's hot. Sometimes she says the alligators are going to eat her. Sometimes I wonder if it's simply a mosquito buzzing around that drives her crazy. Sometimes I think I should have done a better job at providing her the proprioceptive activities that she needs in a day. Sometimes it is her replaying a "scary" part of a movie back in her head. Sometimes I can just tell by the day we've had that her sleep is going to be off. Those days that kids do so much that they should be exhausted, fall asleep as soon as their head hits the pillow, and sleep for 12 hours? Those are the nights that Sienna does not sleep well.

We went to the indoor play land in Barrie. She did great for the most part. She refused to follow a rule that was for her safety. She yelled at me and turned her back and wouldn't allow me to talk to her without her screaming in response. She had one accident there. She gets really excited about the games they can play and little rides they can go on. It's almost like she bounces from one to the next to the next oozing excitement along the way. If I was her, I would be sleeping in the car on the way home, but... not the case!

We have had progressively more difficulty with transitioning. The iPad is a big factor here. It has never been good for us to share videos with her or let her play games on it any time after dinner. Because if we do so, even with a timer, minute to minute warnings, and a social story about what happens when the timer goes off, it often ends up in meltdowns and outright screaming at the top of her lungs. But it has also been more challenging to get her into the shower/bath, away from the television, to the dinner table, etc. As the days wear on her tolerance becomes less for her brother and for people not doing exactly what she wants. As well, I've noticed that she becomes way more distracted in the bathroom too. It's like she's off in Lala Land and isn't sure where she's at in the routine. I have found her heading back to the toilet and pulling her pants down after she's done that... thinking that she hadn't done that step yet. She has forgotten the steps and/or placed them out of order more and more this month. One time, when I wasn't home, she even sat down on the lid of the toilet and peed - without noticing really until she was done. As well, she has pulled out the animal actions and sounds again. She has been rubbing up against us like a cat, whining like a dog instead of speaking, and just has been grunting and making odd noises more often. She has had more-than-usual less patience for her brother. I can't leave them for very long on their own in a room together or it will end up in hitting, kicking, or roaring in Kyp's face. He will come running to me and say, "Mum... Sienna did 'such-and-such'. I don't like that!" He's very good at explaining what happened and sometimes he is the instigator but sometimes it's that, unfortunately, Sienna wasn't responding in an appropriate or acceptable way.

On to the present...

August 10 - Three accidents by 6:00pm. She's excited to go to Niagara Falls tomorrow. She probably won't sleep tonight as a result. We have been showing her videos and pictures of where we will go, what we will do, and even mimicking the sounds of the falls with the kitchen tap water. It will be interesting to see how we do sleeping in a hotel. She has already indicated that she doesn't want to "sleep there" but when asked where she does want to sleep, she doesn't have an answer. Animal noises and rubbing today. A couple of screaming episodes today. These are relatively new. It seems to be replacing the "melt-down"... How age appropriate... LOL.

August 11 - Long car ride to the Falls. Couple of breaks along the way. Loved seeing the water park hotel we're staying at. Can see that the games room that you have to go through to get to the water park will be a problem. 

August 19 - Day 1 of camp. Brought visuals, weighted best, extra underwear, treats for poo. Counsellor is different then last time but very nice. Seems to have some training in regard to special needs. Didn't meet/talk to her before camp this time. Spent time with her explaining stuff. Not worried. Only worried about the poop issues... Had 2 accidents. Otherwise, good day.

August 20 - Day 2 of camp. 2 accidents and then 1 at swimming lessons. She hasn't done that in a while. We talked about what to do if she has to go during her lesson prior but... 

August 21 - Day 3 of camp. 3 accidents. Fairly smooth evening until I moved my seat at the dinner table. Didn't like that. Meltdown until I moved back. Jamie did night routine with both kids.

August 22 - Came to our room around 4:30am. Kyp was already in our bed so I went and tried to sleep in her bed with her. Day 4 of camp - 3 accidents.

August 23 - Day 5 of camp. Planned to go to the final "teddy bear picnic". Got a call around 10:30 asking for me to bring more clean underwear and a change of clothes. Had to hit the store on the way because I wasn't home and by the time I got there, she was on her third pair and they were dirty. More accidents in the evening.

August 24 - Make up swimming class. Accident during... It's now 5:00 and we've been through 5 pairs of underwear and have gone in the toilet 3 times... wtf??

August 25 - Cousin birthday party. Lots of kids but big space. I was reminded by my own cousin how far Sienna has come with the group interaction. She was right in there playing in tight quarters with a bunch of kids. Must remember to remind myself of those things!! One accident there. One in the hot tub at home. Off the stool softener to see what happens. Think I need to place a call to paediatrician to ask about this...

August 28 - Went to daycare. Peed her pants in the car on the way home (??). That's not typical. Forgot to get her backpack. Wonder how many accidents... one in her pants and one in the shower at home. She was what I call "a disaster" in the evening. Meltdowns, grunting, pointing, one word sentences, very slow at doing routines because she's easily distracted and off in Lala Land. Didn't sleep well. Ended up in our bed kicking around and grinding her teeth.

August 29 - Went to school to check out classroom and see teachers again. Excited (jumping & clenching fists) but wouldn't respond to people with words. Just squeals. Can't remember how many underwear but one within the hour we were there - even after going to the washroom just before leaving home.

August 31 - 5 pairs of underwear, 20,000 meltdowns, 1 fall on the steps out of neighbour's trampoline = 1 bloody nose and a scraped knee... Phew... What a day.

I hope being in a school routine will turn things around. I tried to stick to the times all summer and things seemed to have digressed. It's almost as if she doesn't even know she has to go now. She doesn't even sit down to hold it. It just comes out. There are some changes to her life right now too... Daddy broke his leg. Nana is here to help out. Mommy had to swap cars with Uncle Barry. And when she goes back to school she won't be taking the bus to and from. I'll be driving her to before-school-care and picking her up at the bus every day except Wednesday. These are significant enough changes in her daily routine to throw her off. Even with the visuals. It's more important than ever that we do everything in the exact same order as usual. Dinner. She baths first. Gets pjs on. Has snack. Brushes hair. Goes pee. Brushes teeth. Washes hands. Do chart. Body brushing technique (for calming). Reads 3 books with mommy. Turn off light. Countdown 3 minutes to mommy leaving. We'll see how next week back to school goes...