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.