I shed a few tears today...

The last day of school... An emotional day. Nothing to do with the usual mother sighing... "Ahhhh. Another year gone by. We're does time go? I can't believe my baby is in grade blablabla..." Nope. 

My first tears were shed after I talked to Sienna's fantastic teacher - who's been with us for two years taking care of my daughter like she was her own. She gets it. She has experienced some similar challenges with her son so she has not only helped Sienna but also me personally with learning how to accept some of those challenges. We discussed how far Sienna has come and she was so excited to tell me about Sienna's reading level which, according to her, is way above where she should be. It's so heartwarming to hear a teacher excited about that. Don't get me wrong. I am impressed with Sienna's reading. And this is attributed to the teacher's effort 100%. Sienna began reluctantly. But we have spent so much of our time focused on other things that academics are kind of at the bottom of the list. I think many people who know me would be surprised to hear that. Only because I was always such a good student and focused on school achievement myself. But our focus with Sienna in particular is to do all the things we can to keep her from experiencing anxiety or being teased or bullied. This frame of mind is also something I feel for my son. I really don't care what kind of grades he gets. I care that he is happy and kind to others. So for those people who get upset about their child's grades, I would encourage them to ask themselves if their child is happy. That's it. That's the most important thing. Anyhow, off topic I go again... I shed some tears because if it weren't for that teacher, our daughter would not be where she is in SO many ways and she would not be excited to go to school every day. I can't thank her enough. And there I go again tearing up about it.

My second tears were shed when Sienna got off the bus today. The last day of school. The last day of senior kindergarten. One of her friends, and our neighbour, was having a little graduation party for a few boys. It was so sweet and thoughtful, and of course, I thought of how I should have done something too. But aside from that I wondered if other kids were doing that and was Sienna not invited. And I reflected on how easy it is for parents to send their kids to a friend's house off the bus and not worry about them. I would have to think about how she would handle being out of routine and how will she handle the social aspects of a gathering and who will take her to the washroom and how will she verbalize her feelings and needs. I wonder if other parents realize how easy that is for them. Birthday parties. Play dates. Outings. Movies. Car rides. Kindergarten graduation celebrations. Tears.

And finally, I opened up Sienna's backpack and found a lovely letter from Sienna's ECE teacher thanking us for the end-of-school-year gift we gave her. She put forth such effort to describe how great she thinks Sienna is, how far she has come, and how bright her future is. She thanked us for working so hard every day for her and being advocates for Sienna. She wrote about what she has taken away from her experience teaching Sienna every day for two years. That is what struck me the most. Sometimes parents of children with special needs need to hear those things. We need people to remind us how hard we are working and that we are doing a good job. Hearing it inspires me and gives me just a little boost of energy to get through another few days... The letter was heartfelt. It was sincere. And it made me cry. 

So now we are done with kindergarten and on to the summer holidays. I'm unsure how I feel... other than the tears today. Likely deep down I am worried about how to structure summer holidays to meet Sienna's needs but to also catch a break for myself here and there. I am likely stressing about our lack of babysitters and support people. It's very possible that I am pondering how the toileting will go now that I'm on my own and don't have the structure of the school day and other people to support me. I am wondering how I will sustain the motivation and development of Sienna's school triumphs over the two months of the summer. How will the transition go to a new classroom, new teacher, and new curriculum in September? With her brother going to the school, will she be more stressed? Will this cause new issues? Or will I be able to pick up more about her days because he will tell all?

Whew! It's hard to be a parent of a child with special needs. She is everything to me.

A New Year... 2014

It will be the year of change. One can always hope. I always check back through my previous blog when I begin the next one and reflect on where I was at. Sometimes I can see the improvements that we have made and sometimes I just remind myself of past frustration and exhaustion and wonder if I'm at that same level or not currently... Since that blog, I did not go into the school. I decided to wait until I met with the behaviour consultant and get started on the program. I knew the school team would agree to meet with her. They really are awesome and very supportive. The frustration for me is not knowing what's going on during the school day when I have a child with a communication disorder... even with a communication book. I don't want to nag too much but I also want my daughter to move forward. And right now, my main concerns involve her personal hygiene. As a child on the spectrum, if she does not learn these skills at an early age, it will only get harder and harder to teach her. My consultant told me once that the way you teach these children the first time is the way they will expect to do it every time from there on. So once you have taught your child to wipe back to front (because it is the least time consuming and you think that you can just correct it later), your child will wipe back to front. Well, the consultant is right. Why is consistency across school personnel, family members and including us parents important? I guess there's no need to explain...


We met with the ABA (Applied Behaviour Analysis) consultant once a week for 10 weeks and are now awaiting our final one month follow-up. We began this in November and had some cancellations due to weather so the program has actually been in place for over close to 16 weeks. The ABA Program through the Children's Treatment Network allows us to identify and work solely and completely on one goal with the help of the consultant (I'll call her L). L has no direct one-on-one contact with Sienna. Her role is to coach us on how to improve the behaviour that we have identified as the priority. It has been a great experience and I have learned a lot. It reminds me of the importance of explicit teaching strategies, visual necessities and the excessive motivational strategies we will have to figure out over the years. I know... excessive is a strong word. Well, it is excessive. We already use motivations for pretty much everything... finishing a meal, paying attention, transitioning from one activity to another, heading to the bathroom, calming down... the list could go on and on.


First, before I explain the program, remember that Sienna has been on a toileting schedule practically since we thought we potty-trained her at the age of two and a half. She rarely initiates a bathroom break and holds urine for a ridiculous amount of time. This was evident way back at the age of eleven months old when we had one of those blue-dye x-rays of her bladder to check a bladder infection. The x-ray technician told us that she held all of the liquid until her bladder was close to 100% full: not typical for a baby who should let bits out at a time. At school, the EA takes her to the washroom at specific times throughout the day and has her remain on the toilet for a good ten minutes to see if a BM happens. Motivator? Books. At home, we have her remain on the toilet for as long as we can for the same reason. Motivator? Not books. Didn't work at home. I-pad. Good. Not good. She can now navigate YouTube and I have to pop in every now and then to ensure she isn't watching something inappropriate. Her BMs are all over the place... well, not all over the place in the literal sense but there is no consistent time that she will have one. We have been tracking that with a chart: What time does she go? Does she have clean underwear? Does she poop? Big or small? We are looking for a pattern and have found nothing. Some days she goes three times and other days she goes none.

Anyway, the program looks like this: to the right, the choice board of rewards and the clear jars in which we keep them. The consultant suggested this because of the visual need for reinforcement.

Next, Sienna's Clean Board. This reinforces the three clean underwear that we hope she has throughout the day at three of the intervals which we have her scheduled in the bathroom. For each time she is clean, she gets a Tinkerbell. If she reaches three consecutive Tinkerbells, she receives the reward. If she is dirty one of those times, we stop and try again tomorrow. She does three checks at school and three checks at home for now. If we see five consecutive days without accidents including a weekend (because those are the less structured days), then we move on to just three checks total.


Also, the poop reward. She picks a different reward that she would receive for each time she poops in the toilet, regardless of how small and regardless of whether she has had an accident or whatever. This reinforces the positive behaviour.


The program has been going okay. We have had some great runs of cleanliness and we've stumbled upon some roadblocks recently. My motivation to continue to motivate her is unmotivated. I'm tired out. She doesn't seem to be interested anymore in the rewards we have for her to choose from. I kinda knew this would happen. She has always changed her motivational reasons for doing different things. Sure. Balloons were a great idea. That worked for a week. I changed some of the options up -- butterfly gummies, rockets, lollipops, jelly beans, new jelly beans, cooler jelly beans... we even have a treasure box with a variety of things. Nothin'. She's done with it. Hence, probably back up to a dozen accidents in the last week with only one complete clean day in the last month.


For our follow-up appointment, L will be coming and showing me how to do a preference assessment. Because motivators often change frequently for kids on the spectrum, this is something that is to be expected I guess. For the assessment I will go out and get a variety of treats and have Sienna test them out prior to L coming back for the visit. L will then offer Sienna two choices and keep track of which choices are her most selected. Those will be what we put in the jars and on the choice board. Apparently I will have to do this every once in a while to keep the motivation rolling. People have told me that someday I will look back on all of this and laugh. Sorry. Not the case. And some people question why it is that we are doing this and have continued to do this even though things don't seem to be improving. And this is all I can say: I believe in ABA and we have to hope that the programs that have been successful for others will be successful for us too, regardless of how long it takes. Wish us luck!

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.