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...

Summer is Here

My doc suggested I journal about our challenges with Asperger's and I told her I have a blog. Well... I had a blog... It's been so long since the last time I wrote. I guess that might tell you how busy we've been. We are now well into the summer and I agree with my doc. I need to continue to blog so I know where we have been and what we have gotten through.

I realized today that I need help. Now, I've said this before on a number of occasions and believe me, I've tried to find help. But it takes a lot of energy to find the help, organize the help, teach the help, converse and reflect with the help, and update the help on all the newest nuances. I'm sure I need help in many other ways ;) but a support worker is what I need. Problem? ...$$$ They cost $$$. I have a fantastic babysitter who is now a primary/junior teacher without a teaching job, and thankfully she works shifts at a grocery store so I can often schedule her in to help out.  But that's just for a night out for Jamie and I. I need help teaching! I need help constantly teaching the social skills and the safety skills and the body awareness, and and and. I am teaching for all of her waking hours and it's exhausting.

Funny. I just called (I'm sure for the second time) Catulpa, knowing that we don't qualify, but checking just in case, in regard to respite support. It's the summer and this is when I "have time". That's a funny statement. I don't have time. The only time I have time is when both of my kids are somewhere other than with me and that means somewhere other than our home too.

Anyway, back to the recap of January to present. Rewind!

I went back to work part time in February and I still felt like I worked a full time job. It was great to be able to get Sienna on the bus because that's what she needed. She needed a constant and that was me. Mornings continued to be challenging. Some days I only had to be in the room while she dressed herself and some days I had to dress her. The morning routine from a wakeup start to a get-in-the-car finish took a minimum of one hour. And that was just getting her dressed, peed, teeth brushed, fed, hair brushed and coat/boots on. That did not include getting myself ready. That had to be done before she was up and I wasn't ironing clothes for myself believe me! Toileting was terrible and had been falling apart since before Christmas. It finally got better somehow around the end of May. I had gotten so exhausted that I finally told the Principal that I needed to go back to the same support we had back in November. One EA, same bathroom, same picture, same times, same words used. It started to improve within a few weeks and thankfully we kept it consistent until the end of the school year. Evening meltdowns were frequent until probably May-ish as well. I'm not sure what contributed to things improving in most areas around May but I'm thinking it was a combination of (finally!) getting used to the routine and people involved in her day and what was expected of her as well as less clothing to put on and (oh yeah!!) her equipment finally got to the school and was being used. That was it! She got a few items that her teacher began incorporating into her school day and I saw an immediate improvement in sleep, eating, focus, concentration, dressing, toileting, and transitioning. Simple things... a 4lb weighted vest used 3 times a day, a 2lb weighted ball to lift up and down, and her teacher offered quiet hallway activities to all the students which is what Sienna always chose as opposed to a group classroom activity involving movement/noise/cooperation.

Now here we are... I was able to break free of some night time routines and start playing ball again. It took some advanced preparation for Sienna but she was ready to have this change in her routine. She now deals with it very well and we don't have to give her a day's notice. I was concerned about summer and rightfully so. Things are going well but it can be tiring and I really want some time with both of my kids separately. Now that they've been together quite a lot for about 4 weeks, they no longer can handle being together for much more than a few minutes - unless they're watching tv. Watching tv is okay for my son because he is very social and can go off and play on his own for several minutes at a time even during a show. For Sienna, she would watch tv all day if I let her. But that wouldn't be good for anyone... No physical stimulation, no sensory stimulation, no interactions. On the other hand, if she's trying to play with her brother I have to constantly coach and monitor it because she can be very unreasonable if he doesn't do what she predicts or wants him to do. Over the last few weeks it has started to become physical on Sienna's part mostly. She lashes out... slaps, hits, kicks, squeezes, pinches. And it's aggressive and becoming progressively more so. Hence, my need for some help. Ironically, I received notice in the mail today saying that we qualify for Special Services at Home which provides funding for respite support (which I applied to last October by the way). We are on the wait list. Surprise!!

I'm sure people just think, well why doesn't she just get a babysitter and get out of the house? But my point is that I need someone who can teach Sienna. Because if I get "just a babysitter" who does not understand that my daughter understands and communicates differently than what we see as the norm, then I am just setting myself up for a challenging return to my home. If the sitter doesn't follow the routine, I pay for it and Sienna doesn't benefit in any way. Here's a great example of how much she needs the routine... Every single day, when she gets up, I have immediately had her get dressed, brush her teeth, and go to the washroom. I get her breakfast before she is allowed to watch tv. This was the recommendation by the Autism Consultation (a very smart lady). Well, today I didn't do that. I was tired. I wanted to drink my coffee in peace and quiet, and it's Saturday. She ended up watching tv in our bed with Jamie for an hour, got through the rest of the morning stuff fairly well but oh Lordy! Was she a disaster today! She fought with her brother way more than usual, would not accept his pretend play with her in any way (he kept doing everything wrong in her eyes - even though the poor guy was trying so hard to make her happy), and transitions from one thing to the next was particularly hard. Bottom line, there were lots of tears and screaming. Not a fun day for anyone in our house... except for our trip to the Scales Nature Park where Sienna got to hold a bunch of snakes (which she absolutely loves).

I did put Sienna in camp last week. We had a free support worker through Parks and Rec for the week. It was good. Not horrible. Not awesome. But good. She seems to have had fun. I made up a visual schedule based on the day's activities which we reviewed several times. I sent it with her and explained it to her support person, as well as her weighted vest, her noise-canceling headphones and treats for BMs. I wish she could verbalize how she felt and what she did and how her social play went and was she stressed and all that. The evenings got progressively more challenging as the week went on but there's one thing we do know and that's that social interactions cause her stress. So she was placed in a social situation every day for the whole week and that's tough for her. She did have a little incident on the playground which the support worker couldn't figure out what happened and Sienna couldn't explain it. But Sienna hit a boy and he pushed her back. Doesn't really surprise me. When I asked Sienna about it, she just said they were playing "bad guys". So I totally know what happened... Sienna was growling at the boy and pretending to be "bad" and he did the same back to her and she didn't like it. It happens in my house all the time! HAHA! So, we just have to let it go and hope to have continued support with the interactions she has with other children.

Sienna thrives when she gets to spend one-on-one time with an adult. And she loves and adores little babies. Almost too much. She gets right into their personal space and wants to touch their faces and hold their hands and sometimes knocks them over (happened at McDonald's). But not maliciously. We are going to continue to work on same age social play and interactions. She will avoid it as much as she can because it's stressful but we have to encourage it because it's what she will face throughout her school years. So in August, I'm looking for another camp. This time the support worker won't be free but whatever. And I'm sending her to her old pre-school for a day here and there as well. They know her and she knows them and she understands the routine. Not to mention, she'll go on days when Kypton will go too so it will be more comfortable for her. They'll be in the same room so hopefully the teachers won't have to break up any fights... :)

Until next time. Hopefully not so long...

Return to School

I thought I'd journal a quick summary of our return to school after the Christmas Break. Transition from these breaks is difficult for kids on the Autism Spectrum - every time! We (and by we, I mean my daughter) are now just getting accustomed to the transition from the weekend to Mondays! Sienna did considerably well and I think, as a family, we were more prepared for challenges this time around... The transition for us as parents is not as stressful if we can begin to anticipate simply that there might be some additional meltdowns and the like. We are learning!!

Monday - Day 1: Not interested in getting dressed, brushing teeth or going to the bathroom... "Mommy help me!" Started getting snow gear on at 7:55. Finally got out the door at 8:35. Ate Welch's fruit snack for lunch at school. Nothing else. Almost missed bus home. Was "looking at pictures on the wall". Where were the peer helpers who are supposed to take them to bus? Wanted to go sledding. Too cold. Meltdown. Soiled underwear. Difficult to get to sit still and eat dinner. In and out of bed at night.

Tuesday - Day 2: Neighbour friend from JK class came over in morning. Hard time playing nicely. Very demanding (not the friend!!). Friend picked up mittens to give to Sienna and she snatched them and yelled, "Don't touch those! They are mine!" Demanding and Emotional (with a capital E!!). Distracted when time to get winter gear on. Wanted to colour. Struggle. Ate most of lunch at school. Yay! Sledded for 15 minutes after school. Refused to eat dinner with us. Didn't want us "looking at her". Ate dinner in playroom by herself. Fell asleep on couch for 20 minutes. Difficult to get to bed.

Wednesday - Day 3: Neighbour came over in morning. Difficulty playing nicely. Have to do it "my way"! Argumentative and unwilling to share. Lala-Land when time for winter gear. Ate most of lunch at school. Soiled underwear. Very glued to TV after school. Think I called her name within 10 feet about 46 times with no response. Had to shut TV off. Swimming. Fell asleep in car on the way. Hadn't had swimming lessons for 3 weeks. Forgot almost everything she's learned including how to hold her breath under water. Funny. But not funny. Ended up with 1:1 so that was good. Instructor asked questions and attempted conversation. No response. Very unsettled in bed. Squirmy, fidgety, unable to settle. Up crying within 2 hours.

Thursday - Day 4: Awake at 5:00am. Dressed herself (first time in weeks!). Excited to wear new sparkly skirt :). Had a meltdown at school when she wanted to sit beside a friend and someone else was sitting there. Didn't eat any lunch at school. Soiled underwear in backpack. Went to neighbour's house after school. Had an accident there. Ate dinner there and then at home too. I got home at 6:00pm. Two or three meltdowns about bath, brushing teeth, getting jammies on. Prepared her for no school tomorrow (Political Protest Day). Fell asleep fairly easily. Was likely exhausted!

Friday - Day 5: Political Protest Day. Shoot. We were on a roll... Wait. Protest cancelled at 6:00am. School is open. Buses are not running. After contemplation, decided she would benefit more socially by going to school and might as well make use of the EA time she gets. Maybe she'll get some 1:1 time. Changed her plans. Not too much of a struggle. Drove her and neighbour friend to school. Eighteen students of all ages rotated from teacher to teacher throughout the day. Soiled underwear in backpack. Went to neighbour's house after school. Picked her up at 5:00. No problems. (Sigh) Yay! Didn't want bath. Meltdown. Convinced her to have one. Went to sleep fine.

All in all, a considerably smooth transition back to school. Having said that, week 2 back to school after the Christmas Break is even better. Less accidents, fewer meltdowns, and better sleep.

Unstructured Time

Have I said before that children with ASD need structure and routine? Enter.... Christmas Break. Two weeks of chaos in my daughter's world; visiting family members she has not seen for months, driving in the car for long periods of time, noise-filled celebrations with gluten-filled desserts, unfamiliar surroundings, wrapping paper flying everywhere, being with her brother all day every day and having to share mommy and daddy with him, people asking countless questions about Santa and what presents and from whom... This is a recipe for sensory overload.

I would not take back any of the celebrations and I hope that as Sienna gets older, she will be able to manage these events, and lack of structure, a little better. We reviewed every evening what we would be doing the next day, who we would be seeing, whether or not we'd be having a car ride, how we could greet people, who we could play with, and what to say if someone gave us a gift. And she did well at the events. That's my girl! However, in holding it together at these excursions, she expresses her distaste with the lack of structure when we get home. I giggle when I write that. I don't know why. I'm so happy that she can cope with the events as they are happening. It makes parenting her in public much easier than it could be. Maybe I laugh because home is her home. Home is where she is comfortable. It's where she can express her feelings in whatever way she is able.

It is so difficult to teach Sienna how to express her feelings in words. She has recently used the phrase, "But I'm scared!" and I ask her what she is scared of and she says, "Spiders!". Now, I know that is totally untrue. She loves reptiles, spiders and the like. And the spider comment is totally out of context for whatever situation in which she is feeling something uncomfortable. The difficulty is figuring out what it is that she is trying to express. Sienna has struggled, over these two weeks, with expressing her feelings. There have been more frequent and intense meltdowns and she has expressed more need to have specific cups to drink from, specific food to eat, and specific pajamas to sleep in. She has outright refused to go to the bathroom and/or follow the bathroom routine (ie. washing hands) and we've had a hard time just getting her dressed. She has stuck out her tongue, she is slapping our butts hard (which may seem somewhat funny but I'm concerned she will take these things back to school with her), and she has lashed out at her brother a lot (sometimes warranted i'm sure...).

We did a great job of having her bed time routine stay the same as usual (I'm proud of us for that!). But, we could have done a better job at providing some structure during the "home time". That would have likely helped. Structured time, however, means one-on-one adult time. It could include one movie each day or blocks of 20 minutes on our new iPad (!yay!). But it can't be all encompassing movies and iPad all day long. We learned that transitioning from the iPad on to something else is a major meltdown regardless of a visual and auditory timer, with oral reminders of time left from me, and discussion prior to turning on the iPad about what happens and what doesn't happen when the timer sounds. Sienna needs to exercise her body and her brain. Anyone knows over Christmas break how much cleanup and preparation there is to do . This makes for a challenge with finding the individual time for her as well as our son.

We had a lovely Christmas Break - even though we all fought colds and flu. It was great to see both children excited on Christmas morning and beginning to feel the magic of Santa and his reindeer (Rudolph is Sienna's favourite). They walked through the house singing Christmas carols and were happy and joyful at times. As the break drew longer, some significant blood-curdling screaming occurred, more babbling and rhyming with our words, less "real" conversation, and more dependence on mommy for simple things. We learned though. We learned a little bit about how we could try to structure her days a little better next time. She really took to a mini visual schedule allowing her to pick activities in order. I would let her do it and then would move some things around (with her permission) so that we could fit lunch and a potential break in there for me (!!). This is one reason that we ask family and friends to give us some notice for visits. We had visitors call and come over 15 minutes later one day. Well, that really messed up her schedule. If she does not get to do those things in order, life becomes challenging. She barely spoke and didn't interact with the visitors at all. After they left, her schedule was out of order and we didn't have time to fit all the activities in before bath. If we had had notice that morning, it would have been more likely for her to interact, because I would have had a chance to prepare her and she would have had a chance to allow it to sink in and prepare herself. And we would have been able to lessen the activities that she was going to do so she could follow along in order.

I was able to put Sienna into a sport for three 1/2 days last week. It was good. A nice break for me and some structured activity for her. She was able to go with a friend and enjoys watching and following along. I would love to put her in full days but don't feel the staff is adequately able to support her that long. They're just not trained, and quite honestly, don't get paid enough to provide the interventions my daughter needs. They agreed, ahead of time, that they would be able to support the toileting and assured me that if I gave some simple information about strengths and needs, that would be welcome. And we discussed which instructor would best suit my daughter's needs. I didn't get the feeling, however, that this was the case when I gave the instructor a 1/2 page very brief outline of Sienna's strengths, needs, some basic information, and our goals for camp: fun and social interaction. The instructor looked disgusted with my effort to support her. When I asked if she had any questions, she said, "That pretty much covers it all," with a scowl, tone, and... almost a roll of the eyes. I was slightly pissed and responded as nicely as possible, "No. That doesn't really cover it all. But it's a good place to start." As long as they are nice to her and try to support the social interactions with other children, I'm okay with that. But my daughter learns social interaction through significant repetition with one-on-one adult support or by watching what people are modelling around her. She is not able to identify what is and isn't appropriate social behaviour. Hence, the butt-slapping, although I have to make it clear that this is not something she sees in our house... I know what you're thinking! LOL. I had to, and will have to, weigh the pros and cons and hope above hope that people are modelling appropriate behaviour when I'm not around. In this day and age, I have worries. What some children, teens, and adults believe is funny social behaviour, is totally unacceptable in many situations - something my daughter is not able to distinguish - and I'm not sure she will ever figure it all out. She takes things literally and has a hard time understanding people who are joking; something I should make a note to blog about later.

Well, the unstructured break is over. The thoughts on my mind now are... What are we going to do over March Break? And more importantly, what the heck am I going to do over the summer? I feel somewhat disappointed with the sport camp experience. I'm not sure that's something I would feel comfortable putting her back into. I have to think about it. And maybe by July, if her toileting issues are more resolved, I could do it. The "Catch 22" is that it is hard for me to have a break when I am worried about how she is coping (she had soiled underwear 2 of the 3 days at camp when I picked her up) and what she is learning through osmosis. I would really love to have her involved in something with support from someone other than me. Maybe that sounds selfish. But I need a break here and there... and I have a son who, to be honest, should be experiencing more activities than he is. There are always choices and I am constantly weighing them... I wish someone would just tell me what the best choice is every time so I can do it!

I kept thinking of this quote over the break...

There are good days and there are bad days and this is one of them.
          ~ Lawrence Welk

Isn't that the guy that my grandparents stopped everything for to watch on TV once a week? Maybe they knew something I didn't... Well, he's right. There is always hope as long as we are together. On the good days and bad days alike, I am grateful to have my daughter in my life.