Starting school

Pea has been super excited to go back to school; ready since the beginning of August in fact. The week leading up she started getting out of bed again in the night, and hasn't done that for months. I took her in for a school visit on the Wednesday prior (after some rearranging on my part of the time I had previously set with the head honcho). We were able to semi-confirm who the teacher would be and see the playground. We were unable to see the classroom (honcho didn't have a key?), unable find out who is in her class (confidentiality), unable to speak with or meet the classroom teacher, resource teacher, or EA (not in the building), unable to share information about Pea to the people involved with her. Kinda (very) disappointing, as I had rearranged my work schedule and daycare at the last minute to accommodate the change in time.

Take Two: After expressing that we wouldn't feel comfortable having her start school until we had a chance to chat with the teacher (at least), hubby took some time off work Friday to go in a second time. Very good impression of the teacher, who let Pea pick her coat hook, pick who she'd like to sit beside in class, listened to our concerns, read the letter we wrote about the attributes of our Sweet Pea, read the goals we had for the year (given to the SERT), and then followed up with an email. She even wanted to set a date for a meeting the first week of school. Sweet! We're rollin'...

Day 1: Pea is super excited to go to school. Slept well. Woke up excited and wanted to do every household job she could (feed the dog, set the table, etc.). This is a form of her getting out her pent up excitement. Easy to transition. Turned off the tv with little to no countdown, dressed, out the door and in car seat before daddy could snap his fingers. The day goes by. She comes home with a big smile. And all appears to go well at school until we ask her who is in her class. "I know two people mommy," and holds up two fingers. She names them and I respond by saying she must know more than that! Cripes, there are five kids alone on our street in the same grade! "Nope." After a little digging (with a child who doesn't have a penchant for the spoken language), we find out that none of the five other kids on our street are in her class. 

We let that information sit in our brains while we went about the nightly after school stuff; toilet, reward for successful day (wii time), snack, swimming lessons, dinner, teeth, books, bed). Then mommy and daddy came to joint epiphanies at the same time. Wtf? There is not one kid on our street in her class? These are the families we chill with on weekends. These are the kids who have been over and swam in our pool this summer. These are the kids hubby coached soccer with the sole purpose of maintaining those social connections. These are the kids we see at the bus stop and playing on the street while we're out walking. These are the families who are getting to know our daughter's needs. These are the parents we trust and know. These are the homes we might consider having Pea over for a play date on her own. These are the kids we have been establishing relationships with for five years. These are the kids who will keep an eye out for Pea when she gets older.

So what is this? Mommy and daddy have a very thoughtful adult-like conversation and discussion about what this is. Some words like inclusiveness and segregation and isolation come up. We just came off a bad year of school in our opinion. No gains in social skills. I'll leave it at that, but bothersome enough that I called the closest private school in January to see what they had to offer. I did my research and was very seriously considering pulling Pea. Could we afford it? Absolutely not. Must we afford it? Absolutely! If that is what Pea needs. We both grew up in the public school system. Maybe we were over reacting (?) Maybe it would get better (?) Bla bla bla. Nope. By June, we agreed. If we have another year like this, we will not be waiting for another ten months to go by. 

We have worked very hard to build the relationships within our community. And it is an awesome and amazing group of people whom we trust and are grateful for because of their interest in understanding our Sweet Pea. You see, Pea needs an extraordinary amount of time to learn and build social skills with peers. And needs help to do so. We need access to every single minute possible for her to do that. Especially with an adult around. In this situation, she gets none of that with our neighbours out of our public school system. Sure, there's recess someone might say. Pea is not going to go out of her way to find those kids and make conversation. It's not natural for her. And there is no adult at recess who has time to guide and support the conversations she may have. So here we are, with a teacher who is proactive and gung-ho, but with a child who has special needs without the group of families we will rely on to look out for her. There are weekends for play dates someone might say. We struggle with play dates for lots of reasons. And what about birthday parties? We all know how that goes. Kids will invite who happens to be in their class. Our fear? She will be excluded.

Our neighbours are going to become strangers. 

In goes Hubby to see head honcho. We have discussed what we would like to say, what we will say, and what we need to leave out. If I had to compare, he is possibly more bothered by this than I am (although I guess I am the one up at 3:30am writing this). He will definitely do a better job having this conversation than I will because I tend to hold back some of what I really want to say and then become emotionally frustrated which may come out as anger, disgust, or contempt. Which it is, don't get me wrong. But that does not lend itself to fruitful conversation with head honcho. Hubby's a man. Honcho is a man. Men expect men to be straight forward, honest, and say what they're gonna say no holds barred. 

Three weeks later...

There will be a shuffle in classes as a result of oversized classes. We can move Pea to the other split class! Ugh. Second thoughts. Teacher is super duper communicator. Teacher is teaching social skills and organization and persistence without having even met us to discuss those are things we need in Pea's program. Familiar EA is in classroom for support for much of the day. Pea has had a very smooth transition as opposed to her other Septembers in our home. If we switch, who is going to guarantee all those same things to ensure there are gains during this important year? Will there be enough support for Pea without the EA? How long will it take for Pea to adjust and for the new teacher to get to know her? Will she stand out in a class with older kids because of her lagging social and play skills? Will she be happy? Will she be happy.

Call the teacher. How much EA support does she need? Some for focus and attention, extra set of eyes and ears for interactions with peers. Great to have input from EA who has worked with her for three years, knows how far to push and when she needs a break. How do you feel she's doing? Chatty, happy, and taking leadership roles with younger kids (teacher shared examples that blew me away and of course made me tear up with joy AND relief). Saaaaayyy whaaaaaaat?! Shit. That makes this decision much harder but much easier. My gut says ... Stay where you are.

Get home. Discuss with hubby. Both of us are torn apart. These decisions are huge for us. They can make or break our progress. Call the EA at home (yes, I feel I have that relationship with her and she did give me her number last year). How do you feel she is doing? Shared some stories, understands why it's difficult for us, loves how this teacher treats and teaches each child as an individual, reminds us that Pea is happy. 

Pea is happy. Decision made. If Pea is happy, our household is happy. When Pea is not happy, this house is a disaster.

Done. She stays. I can breathe. Take her to before school care the next day and our neighbour's kid is there. Pea walks right by her and heads straight to the Lego. Neither greets the other. I think to myself... Maybe being in the same class would not change this scenario at all. They have their group that plays at recess and Pea is not part of that; wasn't last year either when they were in the same class (no ill feelings there at all btw). Pea will fit in where she fits in. We'll never know if this is the right decision or not. But it's been made and we're rolling with it. There will always be "what ifs" for us when it comes to these things. Hell, we question ourselves fifty times a day. In the end, we keep Pea in her routine, make our lives easier in the short term (happy kid= happy family) and add more effort in other places (structured play dates with mommy/daddy coaching and extracurricular). Phew. Glad this week is over! On to the next!

The difference a year makes

When you enter summer as an autism parent, that's when you can really reflect on what a difference one year makes. The school year goes by and we just try to make it from week to week. Working full time, getting kids to activities, getting dinner on the table, meeting with school teams, and perhaps getting out to dinner on our own! The good thing about the school year is the ROUTINE! Summer is the time when we need to plan more, not less. This is the time when, although day camps are a form of structure, they are also a new form of structure with new people, new locations, and definitely new routines. And being home is total lack of structure, which can be managed in small amounts, but will become dreadful if not planned properly for in the long run. I've already been able to reflect on some of the progress we have made from last summer.

1. We sent Sweet Pea to camp for a day by herself the first week of camp. Last year, I wouldn't have even considered this. On the days that my support worker was not available last summer, I went to camp. I'm proud of Pea and generally happy with how it went. We had the support worker go day 1 and 1/2 of day 2. Day 3 was on her own, with the hope that the routine was in place and the people had gotten to know her. From Pea's perspective, I think it went ok, although I won't get much more than a sentence and very few responses if I ask questions. I won't get into details, but in retrospect it would have been best to have support every day for a 1/2 day. That will be what we try to put in place for the next camp. 

2. When she has said she does not want to go to soccer or baseball this year, we have pushed her to participate. Hell, somehow daddy got her to play baseball in the rain. I wasn't there but holy crap! Last  year, she couldn't have been pushed to even leave the house in a situation like that. We have signed her up for a variety of activities throughout the year for which she doesn't have a choice. To an outsider, that may sound odd (our son is 5 and he gets a choice). But if given a choice, Pea would say no. We hope that if we can just get her there, she will likely enjoy herself. We are trying to help her find her "thing", broaden her interests, and she is developing social skills in the meantime, avoiding the solitary confinement that is easier for her.

3. Pea can tolerate the word NO a little better. There may be a meltdown but we may be able to redirect her away from it somehow. Not always, but more than last summer.

4. There are no visual schedules posted up on the wall... Yet. She has demanded the iPad quite a bit more than I would like but all in all, so far so good. Last year we got the visuals out when things got rough. We took them on vacation at Christmas and used them for the first few days. We get them out when she seems not to be able to accept the lack of routine or process the order in which things happen (like the steps in the bathroom routine for example).

5. She has less teeth! Haha. Had to throw that in there.

Having said all this, August continues to be the hardest month of the year for us (April comes in at a close second). By the time we get through four weeks off in July, Pea is ready to go back to school. She's got ants in her pants, doesn't know what to do with her spare time, won't play games, won't play with toys, doesn't want to go outside, is done with soccer, done with baseball, done with her brother, bla bla bla. She resorts to weird car noises instead of speaking and animal actions instead of walking to the kitchen. It's almost like she knows when the clock strikes August. Her sleeping is a mess. She can't stop fidgeting, waking up with night terrors, waking up and very quietly sleep walking out of her room exactly one hour from the time she falls asleep (freaking the crap out of us), getting up at 4:45am (that was today)!! I'm not going to complain about the bathroom because that's at least going fairly well right now - although she Is requesting a lot of iPad time, which she only gets for a bathroom break or success there. Good? Bad? Whatever.

Three more weeks! Baaaaahhhhh! Then we get a new teacher, new classmates, a new routine, new meetings,... Yippee! Really, anything is better than August. I think...

What I've learned about our autism

1. When it's quiet, there is a strong likelihood that the walls will be covered with permanent marker or the child full of chocolate.

2. It's best not to mention a topic that you don't wish to pursue immediately. For example, "Maybe we'll go to the beach tomorrow". Child substitutes the word immediately for tomorrow and it's all yells, hoots and hollers from there....

3. No one understands this autism more than this mommy. This mommy knows how to predict the triggers and calm the meltdowns. This mommy knows what to avoid and how to prepare to leave the safety of this beautiful home we feel safe in. I once told my brother, "I'm her person" and that's the best way to describe it... Just like Meredith and Cristina (If you know me, you'll figure that out heheh). It's a lovely feeling to be someone's person. 

4. It's so important that everyone is on board - family, friends, teachers, babysitters, neighbours, secretaries, educational assistants, playmates, playmates' parents, business owners, camp directors and supervisors, swimming instructors, baseball coaches, soccer coaches, and the list goes on.  We have had so many more positive experiences than not and are so very grateful when we find people who help us. But believe me, it's really hard to forget the few times that my special needs request has been met with sneers or dismissed as if it didn't matter. It matters.

5. It may look to others that we are giving in. It may look like poor parenting. Well guess what. We're always doing our best and have pea's best interest in mind at all times. It's very likely that we are avoiding a meltdown or trying to alleviate some stress from her day which can come in many forms and be expressed in many forms. No one wants their child to feel anxiety and this is real to her. And the rest of her family.

6. When you have worked tirelessly for weeks or months to stop your child from barking like a dog at inappropriate times and places, guess what? She will then start sticking her tongue out and clapping furiously at random times. You just deal with that one, move on to the next, and keep your eyes on the prize... Appropriate social behaviour. And guess what? This cycle will continue. But it will get easier because you will prepare yourself each time that there will be something else coming.

7. We celebrate and get excited about the simplest accomplishments. She asked to use the washroom when I dropped her off at a crafting activity by herself for an hour and a half. The teenage supervisor kind of complained. I was thinking to myself that's f---inn fantastic! She got on the roller coaster and sat with a friend and not me! She got off the iPad when the timer went off. These are major deals for us. It gives my husband and I something to really feel proud about and reminds us to celebrate our persistence. 

8. I have a lot more patience than I ever could have imagined.

9. There is always something new to learn.

10. I fall in love with people who stop and listen to my daughter and really show an interest in what she is saying. Really. I could marry those people.

11. I have been surrounding myself with amazing friends for years to prepare myself for this diagnosis. I have the most thoughtful and non-judgemental circle of diverse friends that I am forever grateful for. 

12. It's a lot of work to find babysitter. So when we find someone who is patient, caring and who will follow what may seem to be silly and odd requests, we pay well.

13. I have learned to take snacks and water everywhere I go. Even if the plan is only a ten minute drive. 

14. The iPad is both the friend and the foe; the friend when I need a break or the customer needs a washroom break, the foe when we have to leave to get going somewhere and the game has not been completed to the end or to the satisfaction of the customer. 

15. Timelines, to a child with autism, mean nothing. There is no rushing this child, no "who can get their shoes on first" and no sense of urgency for being late to arrive to something. Unless of course you want to argue, be yelled at or hear the siren.

16. I only take one child or none child out for groceries or shopping or haircuts or whatever. Much better for my sanity. I was chatting with a school parent the other day about how we have seasons passes to an amusement park. She takes her three girls under the age of 9 on her own and was telling me "you could do it! With only two?! So easy!" she says.  She means well, but hell no lady! Not gonna happen, especially with such a long walk to the parking lot.

17. I've learned that I need time for myself by myself, for each of my kids individually, and for my husband outside of the house. These are things I actively schedule into our lives.

18. I have to plan ahead. I need to know days or weeks in advance for play dates, excursions, family visits, whatever. It doesn't matter who you are or what you want to do. Just believe me. It makes life in autism world much easier in the short term and the long run.

19. No matter how old the child gets she still needs the scheduled sensory breaks and will still have full on three year old meltdowns in public. Whatev! Get over it!

20. The best $250 I spent this year was for autism. An above ground 15 foot swimming pool. Sensory satisfaction. Preferred activity. Good for co-ordination, timing breaths, body awareness, building co-operation skills, eases opportunities for social skills with peers, enhances creativity... Find what works and spend the money. My husband would disagree, which in some ways is understandable. I've spent many dollars on many toys and none have lasted longer than a few weeks. This pool works. Too bad summer doesn't last very long in Canada!

21. And just to add one more so we don't end at 20... (Even though there are 5000 more) No joking man! Joking around, being sarcastic, teasing, especially when she's crying or stressed. Ugh.... Beam me up Scotty. She just doesn't understand it. She may be able to take it from someone she knows well because she is familiar with their particular tone or facial expressions, but from someone else, nope! The teasing especially.

The end!

Capital NT. Figure that acronym out!

The early weeks and months of sleep deserve their very own post which I have slowly been working on. Sleep was definitely one of the red flags for me that something was up. Right back to the day my baby girl was born. But here and now, the current focus of sleep issues are Night Terrors. With a capital NT.

I can't really remember when the night terrors began. I think they began around the age of two. The reason I say that is because I had a newborn then too and I remember making sure that hubby was on duty for the night terrors so I could get some sleep when baby boy was sleeping. Back then, they were not as frequent. Maybe a few times a week. She would stay in her bed and scream and then one of us would go to her and lay with her until she fell back asleep which back then was about a half hour I think. She was easier to rouse from the depths of zombie land back then too. She would stay in her bed and it would usually happen sometime before midnight. 

The terrors became more frequent around the beginning of JK. Since that time there is rarely a night that goes by that does not include one. She goes to bed around 8:00 and they pretty consistently happen shortly after 9:00 now. More recently she has started to get out of her bed. Just now I heard her screaming for me and I went in and she was out of bed by her window. This time I didn't even hear her feet hit the floor and all I'm doing is buying some wag jags while I'm on my iPad. Very quiet! It reminded me to finish up this post that I've been working on for a few weeks. We just got off a three night hiatus from the terrors which is a bloody miraculous thing around here! So we celebrated with ... A smile, a couple of deep breaths and a feeling of relaxation and accomplishment. Even though there was not one single thing that either of us did differently to achieve those terror-less nights.

So! I've done my best to keep track of an entire week of sleep patterns. Each night, bed time was 7:30-8:00 and we had our regular daily routine of school during the week and various things over the weekend. I've never figured out why there are night terrors. They don't seem to correlate to anything in particular; food, overstimulation, understimulation, TV time, school, weekend, whatever. I don't really expect to figure it out. I guess that's why the puzzle piece is the symbol for autism.

Tue Oct 14

9:05pm

- screaming for mommy

- found her walking around her room yelling, "No! I don't want to go!"

- inconsolable and never wakes up while walking around

- held her hand and take her into our bedroom to see daddy and she walked right back out

- fidgety and can't stop moving in bed for 10 minutes before falling back asleep

Wed Oct 15

9:10pm

- fairly simple, easy going night terror (as night terrors go around here)

- woke up yelling for mommy

- took five or so minutes to settle and I laid down with her for about 5 minutes

Thu Oct 16

5:30am

- she got up, went pee (new rule before coming into our bed to try to potty train her at night)

- came into our bed and fell back asleep fairly easily

9:12pm

- screaming for mommy

- yelling "No!"

- seemed to come out of her daze a bit when I started talking about how much I like her new jammies

- went back to sleep quickly (5 minutes) with very little fidgeting

Fri Oct 17

3:00am

- in our bed, slept fairly still through the night

No Night Terror! But...

11:00pm

- daddy thought it was a good idea to try going without a pull-up for some bizarre reason (even though she has never had a dry pull up before) and didn't tell me this was happening

- she came to our bed and wanted in

- noticed she was wet and she wasn't wearing a pull up, daddy fessed up

- then came the screaming... Siren. I had to help her change her soaking wet pajamas and get her cleaned up and in new ones--with pull-up

- siren... Her blankie has pee on it. She can't sleep without her blankie. It's not a typical blankie crush. It's a real life first class emergency can't live without the unbearable pain if the blankie is not in my grip kinda crush

- I find myself washing the blankie in the sink with dishsoap by hand. Gross

- I find myself emptying the dryer of clean clothes and laying in bed waiting for the blankie to dry, yes she's still awake... Can't sleep without blankie!

12:30am

- I've got the blankie, kid in my bed ready to sleep now... me wide awake from the drama

- start to fall asleep around 1:20am

1:30am

- the boy comes in and wants to sleep in our bed

- so! (Said with a sigh...) we all cram in together and just do it. No sleep for me. Not sure about Jamie. Kids seem to survive and sleep like "babies"

Wow. That was a long night.

Sat Oct 18

9:10pm

- mommy and daddy just starting to try to watch a movie, I hear two feet hit the floor just seconds after the first yell, I hit the floor running

- she is out of her bed in the middle of her room wandering around

- same routine, disoriented, out of touch with the present world and reality, wants to hug me, doesn't want to hug me, wants up, doesn't want up, all the while ringing the siren

- eventually calm her down about ten minutes later and get back to he movie (the latest xmen instalment...awesome btw!)

Sun Oct 19

- it's Monday now so I can't remember ... I know. It was only last night. But they all blend. Night terrors more often than no night terrors...

- oh yeah! Now I remember!  

3:00am

- I wake up, can't sleep, start reading on iBooks

3:15am

- boy comes in, climbs over me, lays down and wants to chat, wants me to turn off iPad and roll over to face him

- I oblige because I love the damn kid

- he tells me a few things in his sleep like that I have black all over my face (so he says) and "why is that?" He doesn't wait for an answer because he is sleeping!

- just about asleep...

4:00am

- girl comes in, climbs over me, is forced to sleep beside her brother, they are both kickers and boy still talking in his sleep here and there

4:30am

- I decide this is bullshit and I'm sleeping in her super comfy bed if no one else will!

- I go in and try to get to sleep before my stupid alarm goes off at 5:45am

So THAT'S why I can't remember what happened last night!

Mon Oct 20

9:10pm

- awake with the siren cry

- she has no idea where she is and is yelling for mommy but can't comprehend that I am right there in front of her talking and looking in her eyes

- turn on all the lights, try to hug, wants one, doesn't want one

- points to the curtains, I tell her, "it's a curtain, nothing is there"

- points to the bed, I tell her, "it's her blanket, nothing is there"

- stands up on bed, sits down, stands up again, sits down again, completely disoriented and not present in this world (hey maybe she's a time traveller. Just joking!) 

- screaming the siren, she finally pushes her way out of the bed and I encourage her to walk into my bedroom where the light is on and things are normal

- she leaves my bedroom and I encourage her to walk to the kitchen (last time she walked to the fridge, touched it and seemed to come out of this trance)

- she wants up, she wants down, she wants up, she is heavy, she weighs 44 lbs, ouch

- seems to be coming out of it and we head back to her bedroom, the siren is done, can't believe her brother did not wake up, can't believe the neighbours did not wake up

- I lay down with her for about ten minutes where she is fidgety and wants me closeby touching her in some way but she's hot and shakes off the blankets

- finally gets to sleep with blankie in hand, we will never get rid of that thing and if we did I'm not sure how she would cope with panic and her need for the soft ribbon between her fingers (which she rubs in her sleep)

Sleep. One of the popular challenges for kids with ASD.

Top 3 Things Not to Say to a Parent with a Child on the Spectrum... Not This One Anyway.

I've been reading a blog by "Autism Daddy" which I find so totally fascinating and validating. Although his son has severe autism and my daughter does not, I share so many of his thoughts, feelings, and experiences. I've also followed a blog called "Autsim with a side of fries". Hilarious. I love this girl. She tells it like it is, takes no prisoners, and offers no apologies. I can't say that I understand what any other autism parent is going through because we lead different lives with different children, different obstacles, and different triumphs.  But these blogs are good for my soul. So on those days that I think to myself, "Why the F am I blogging?" I read one of theirs and it reminds me that there are others out there who appreciate the info and insight. I have read a few things along the way about different people identifying their top 5 things not to say to a parent of a child with autism. I've found that there are some definitive things that many of us share. But there are some things that don't bug me at all that other autism parents dislike. I think people are mostly intending to be helpful but I'm not going to lie... Here are a few things that have bothered me to hear.

"Oh yeah... Every kid does that!"

Of all the things people say, this one is the worst. Yes. Lots of kids have meltdowns. Not many six year olds have a dozen in a day. Lots of kids can't handle a long car ride. Not many kids have night terrors, meltdowns, or stop pooping/talking/eating because of overstimulation at a birthday party or understimulation from watching tv all day. Not many kids have to have the exact same routine every single morning where a change in which parent is driving her to school or the fact that she didn't get to see that whole cereal commercial, would incite what else? A meltdown. Or result in an afternoon of animal noises and complete loss of the previously learned English language. Timing is everything. There is no leaving the house in the middle of a tv show. There is no morning without hot chocolate. 

Maybe there are lots of kids who have difficulty with the transition from summer holidays to school. My son doesn't, but maybe kids do. With autism, our struggles are more prolonged, more intense, and more difficult. This year when Sienna started grade one, I can't count how many people responded with this phrase about every child having difficulty with the transition from kindergarten to grade one or summer back to school. And nodding as if to say, "Yeah, I know what you're saying." What that tells me is that this person has NO idea what I'm saying. I can let it go but it's like filing a recipe away. I will hold onto it and pull out some autism education the next time I see the person. And the next time I see the person. And the next time I see the person. What gets me the most is that I know what the "typical" effects are on a child transitioning into school. I have a son who started JK this year! It is soooooo very different!

"I could get her to do that. Just send her over to my house for a day."

More than anything else, this is a dismissal of all the daily effort we make to help our daughter move forward. I have tried EVERYTHING to try to get her to ride a bike with training wheels. I've offered rewards and treats. I've tried everything in the world to make it fun and exciting. She doesn't want to do it. It requires more intense motor planning and body awareness than what she can handle; trying to make her legs move in an unnatural motion, using hands to steer wheels that don't make sense to her, all the while trying to look ahead to see where she is going and then plan to reverse the legs if she needs to stop. Not to mention the anxiety about falling off or tipping over with limited body awareness and an inability to protect herself from a fall (like when you would automatically curl the body up to protect yourself). Too much! And who cares? Does she really need to learn to ride a bike? No. 

At this point i just laugh when people try to give me toileting advice. Unfortunately, even if they work at Kerry's Place, Autism Ontario, are her EA or teacher, or have a child of their own on the spectrum, it's just not going to fly with me. Sorry. I've tried it all. It's like a freaking mission impossible unsolvable mystery. I know your heart is in the right place, but if you want to offer advice for toileting because your kids figured it out the day they turned two, or have been dry at night since they were three, don't. My child does not learn the way yours does. And whatever you do, please don't tell me you're upset that your six year old peed the bed.

"Stop worrying so much."

If I could send my beauty queen to a sleepover and feel comfortable about it, that would be a huge relief. If I could trust that if/when someone was picking on her at school, she would be able to tell me... awesome. Instead I worry that my daughter can not communicate bullying and doesn't understand sarcasm or jokes versus someone being serious. I can't even think about the implications this could have. If I didn't know of all of the progress she has made, in reducing the number of meltdowns, reducing night terrors, increasing focus and attention, and improving her ability to transition from one thing to the next, is dependent upon routine and structure (regardless of how much she may enjoy herself in the short term) I would say yes to sleepovers. But I can't, in good conscience, facilitate regression after all the hard work she has done to get to where she is. I owe that to her. And that's just one example. 

I am pretty intuitive and I know many people think I worry too much. They just don't say it to my face. So that's a great first step. Don't say it to my face! But really... Don't think I worry too much. I don't. I love my kid. And I want my kid to be safe and happy. Just like you love your kid and want your kid to be safe and happy. To be fair, I may just have a few more things to think about when it comes to safety and happiness.

What Doesn't Bug Me?

On the flip side, there are things that have repeatedly come up on other autism parents' radar that they dislike which don't bother me at all. Weird right? For example, if someone says to me, "She doesn't look like she has autism" that doesn't really bug me. I don't know why. What it really says is, "The only autism I know is the full blown severe autism that affects how the person looks physically." So maybe that should tick me off. Because that would mean that people think autism is a physical disability; a visible disability. Which it's not. But, for some reason that one doesn't really rile me up. My daughter is a beauty in the eyes of this beholder. I'm good with that. 

Some parents are bothered when they hear, "I don't know how you do it." You know what I say? Some days I don't do it. Some days I'm a complete disaster. Most days I would say I don't know how I do it either. Working full time in a job that requires a fair amount of thought, organization and energy and coming home to facilitate structure and routine after a long day of talk talk talk, listen listen listen, help help help, teach teach teach? Ugh. The first thing I want to do is lay down on the couch and let things fall where they may; let the kids do whatever, wherever, whenever... But I can't. Not once. Because if I do it once, it affects me for the next three nights. And it's even more important in the morning to follow through immediately with the routine. As soon as the princess' eyes are open. If I don't, even on the weekends, it spells disaster for the weekdays when we are trying to get ready for school. One morning of iPad equals the expectation that every morning has iPad. One morning of staying in our jammies equals the expectation that every morning we stay in our jammies. 

So, as usual, I am being straight forward and honest. Ask an autism parent how her child is doing, if she's enjoying swimming lessons. Celebrate with that parent that her child sat on a bike seat, that she had a full day of clean underwear, that she enjoyed her piano lesson on the weekend, that she finally got over her fear of merry go rounds... Celebrate that her child answered your question, that she made eye contact, that she initiated a conversation with a peer. We find ourselves celebrating the things that others take for granted. Sometimes it takes a person to look beyond what they expect of someone to see the triumphs of each person as an individual. 

A Letter to My Teacher

I borrowed the format of this letter from another blogger that I follow (Autism Daddy he goes by). I think it is a great idea to send to school with Sienna when she starts the new school year.  There will be a lot of changes for her that would not typically send a child into the tizzy that we expect in the evenings. The things that will cause anxiety for her include having: a different classroom, a new cubby in a hallway, no classroom bathroom, a new class structure (with assigned desks), a new teacher with new strategies and expectations, new classmates (as she will move from a split JK/SK to a full grade 1), a new routine, different doors to enter/exit, her brother being there at recess and on the bus, riding the bus, and likely new people at the YMCA daycare in the mornings... These are the things that come to mind but I'm sure there will be others that will take us a while to figure out from her limited communication. That's where the EA will be so helpful! 

Anyway, here is the letter I've written. I haven't done my usual one thousand edits yet so it's straight from the drawing table. I'd love feedback from anyone and everyone on things to add or take out, especially those of you who work in the elementary school system and those of you who know her. Have I missed important things? There is no way to capture it all but I hope to get the essentials covered. Thanks ahead of time! Just send me a Facebook message with your suggestions!

A LETTER TO MY TEACHER - FIFTEEN THINGS ABOUT ME

Hi, my name is Sienna and I am in your class this year. I’m sure you’ve seen me in the halls but I want you to know a little more about me. I’m nervous to be in your class because it’s new and I don’t know what to expect. I need some time to adjust and then I will feel comfortable. I will probably manage well at school in my first few weeks but at home my mom and dad expect some meltdowns. As the time goes by, you will be amazed by the skills that I possess. I sometimes look like I don’t understand. That’s just because I don’t have the same expressions and reactions as other people. I might not look at you when you talk but that doesn’t mean I didn’t hear you.  In fact, I usually hear more than most people (like furnaces and hand dryers). As I become familiar with your classroom I will begin to shine. A great way to speed up this process is letting me know what to expect. Written or picture schedules for the day reduce my anxiety. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it!

1. What is my general disposition?

I am generally happy and like to learn new things. If I get excited or nervous you may see me clench my fists or slide my jaw to the side. Sometimes I might interrupt or can talk quite loudly because I am still learning many social cues.  

2. What am I really, really good at?

I am really good at reading although it may take me some time to read out loud to you. When I left senior kindergarten, my teacher said I was reading above grade level. I am also really good at remembering facts about animals and reptiles because I am so interested in them. I would be the first to grab a frog, spider or bug if I saw one.

3. What do I absolutely LOVE doing?

I absolutely love using the computers or an iPad. Mom and dad use these as rewards for me or else I would spend all day long on one or the other. I also love humming and singing to myself. That means I’m happy and could also mean I’m tuning people out.

4. What do I absolutely HATE doing?

If you asked my mom, she would say I hate pooping… haha! But I don’t really hate doing anything. You’ll know by my reaction if there is something I don’t wish to do. I do, however, dislike crowds, loud noises, and being unsure of what to do next. If you give me a specific job to do, I will excel. I don’t like doing something wrong (like printing a letter incorrectly) and I also don’t want the teacher to think that I’m behaving inappropriately on purpose.

5. What academics are my strong areas?

On my last report card, I was beyond expected level in some math areas (number sense and numeration, geometry and spatial sense and patterning). I was also beyond expected level in reading and writing. I came home in June with entire paragraphs printed. My mom is happy to hear this because she can’t get me to read or write at all at home! And I looooooove exploration and experimentation in science.

6. What academics do I need a lot of extra help with?

I need a little extra care in health and physical activity because we are still working on my body awareness so I can be clumsy. I have a hard time participating in group games sometimes. This is likely because there are many steps to the rules of the game and perhaps because it’s loud and I don’t know what to expect, especially with so many other children running around and making a lot of noise. Again, I also don’t want to do something wrong and I don’t like “losing”. However, I did well this past summer at camp when I tried a few things out. I just have to be ready and in the right mind frame to try.

7. Which skills would my parents really like me to work on this year?

My parents would be so happy if I improved my toileting skills. They’re not so much concerned about initiating bathroom visits as much as they are with just having success. We use a daily reward system for clean underwear and successful BMs in the toilet. Anything made with chocolate is my favourite! I’m sure my mom will send some along with me on the first day. This summer I went for six whole days in a row without an accident AND with sufficient successes in the toilet. My parents were so proud! My mom has to keep an eye on the amount that I expel because when I hold for too long or have too few small BMs, I will need to have some stool softener so I don’t end up going to the hospital again. Mrs. Casey knows me well and she sends home a daily tracking sheet for my mom with that information.

8. How do you know when I’m getting frustrated?

When I’m getting frustrated at home I sometimes screech and make odd noises. This can easily lead to crying (or what my mom calls “the siren”). Mom doesn’t think I have used the siren at school very often because the teachers and EAs have recognized when I need a break. At home frustration may look like me hitting my brother with whatever object is near, my hand or a remote, whatever works! He will be in junior kindergarten this year and mom and dad are not sure if that will be a good thing for him/me or bad for him/me. 

9. What can you do to calm me down before the storm hits?

Using a calm, quiet voice and clearing my personal space helps calm me down. Taking a quiet break somewhere is the best thing, as long as I’m not being centred out or think that I am in trouble. This is where my occupational therapy really helps as well, like having someone do joint compressions, heavy lifting, large muscle activity, spinning, a squeeze toy, or playing in a sensory bucket. It’s best to do those things before the activity that might frustrate me though.

10. Too late! The storm hit! What can you do to calm me down?

Redirecting me to a quiet place to be alone will help and you may wish to ask my previous teachers what strategies they have used. Mom and dad could tell you all the strategies they use, but I tend to react to and respond to things differently at school. 

11. What strategies work really well to get me to do something I don’t want to do?

Making something exciting helps me do something I don’t want to. Being given one step at a time helps. I also like to see a few other people do it first so I know what to expect. Motivation to do things I don’t want to is always a challenge because my motivator changes frequently depending on my day/mood. Using “first, then” language may help with the “then” being something I really enjoy doing.

12. What typically makes me laugh?


Sometimes making jokes makes me laugh but other times I just don’t understand because I process things in a literal way. Swimming always makes me laugh because I love the weightless feeling I have in the water.

13. What consequences back-fire and don’t give the desired results?

When mom or dad raise their voices or try to reason with me when I’m already frustrated, it does not give the desired results. They also use a countdown of 3…2…1… if it is something they feel I can handle at the time.





14. I don’t like consequences, but which consequences work well for me?

Warning me of a time out using specific straightforward language may cause me some stress but may also stop the undesired behaviour from occurring. Time outs are devastating to me. At home, mom and dad most often use “first, then” so there are rarely consequences that would include taking things away from me. I have a hard time understanding consequences because I don’t realize what I’ve done that’s inappropriate. Mom and dad try to focus on the behaviour they hope to see the next time.

15. I would also like you to know that …

I love music and singing and dancing. After school I will be continuing with piano lessons on Mondays and swimming lessons on Tuesdays.

I love school and look forward to going every day. One of my parents will be dropping me off at the YMCA daycare – which I enjoy. My favourite friends are Katie and Maddie and they are twins in senior kindergarten. I also have many neighbours and friends that are in grade one. I just need some help pairing up with other children from whom I can learn positive social skills.

I would like to use the wheelchair bathroom (which I call the “secret bathroom”) so that I am not distracted by the noises that occur in a larger bathroom. Last year Mrs. Casey took me once in the morning, at snack times and around 3:00 to prepare for the bus. Hopefully we could try that out again this year ☺

I need a lot of help with the social skills that other children inherently understand. One example is that my mom taught me how to chew with my mouth closed three years ago, but I’ve let it slip over the last few months. So she is once again reminding me of how to chew my food politely.

I am not easily able to communicate the activities and academics I partake in, or the challenges and triumphs that I have at school every day. My mom and dad would be so grateful to have some ideas communicated home so that they can start a conversation with me about these things when I get off the bus. Maybe you have a way of communicating with the parents of all of your students. We had a communication book with my kindergarten teacher that was very helpful and if you wanted to take a look at it, you could just let my mom know. 

This article is property of and copyright © 2003-2010 Jene Aviram of Natural Learning Concepts. 

Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com Jene is an accomplished author and developer of education materials for children with autism and special needs. She is a co-founder of Natural Learning Concepts, a leading manufacturer for special education materials and autism products. Visit the Natural Learning Concepts website at http://www.nlconcepts.com 

Mommy Guilt

People have probably heard the term mommy guilt. We all know what that is... Am I raising my child right? Do I spend enough quality time with him? How could I have sent her to her room? Man, I really yelled at him at dinner. There are some people who have come a long way in their understanding of autism. If I share a quick story about An Hour in the Life of the Meltdown City Queen, most get it. And having kids is exhausting period. I share that exhaustion. I also recognize the amount of time and effort I put into just one kid (and I have two!). Because of that, I feel guilty about a lot of things... And here they are.

#1: My son does not get the nurturing and attention he needs, wants or deserves. He often has to sit and wait. Even when he has what he believes is an urgent request/question/comment about something. I'm sure he wonders why he is disciplined for some things that his sister is not. He gets interrupted. He's usually second. He has to change the way he plays, his noise level, where he sits, what television shows he watches and what order he does things in. He's a very accommodating kid and I'm hoping that he will grow up not feeling resentful or letting people walk all over him, but that he will continue to advocate for his sister and model how to be sensitive to other people's needs. I am very conscious of this guilt and lately have worked on ensuring that he gets one on one time with both mommy and daddy - together and separately. Even if it's just a car ride from daycare for ten minutes with one of us -- we try to make the best of it and give him our full attention.

#2: I would like to spend more time with friends and family. My dad, for one, lives about 40 minutes away, which is not far but for a handful of reasons we never see each other. Jamie and I work full time Monday to Friday during the school year and drive the kids around to sports some evenings. Most evenings it looks almost like the typical young family... Kids get home, unpack backpacks, make dinner, eat dinner, clean up dinner, kids shower, read books and go to bed. You might add a few meltdowns, refusals to eat dinner (from either child), two scheduled fifteen minute bathroom breaks with incentives and rewards, make sure you use the right words at all times, prepare child for transitions with countdowns and incentives, follow the predictable routine, clean a couple of pairs of dirty underwear, and a break up couple of sibling-scraps. Straying from our nightly routine adds to the meltdowns, the accidents and the night terrors. Not to mention that for Sienna, after a long day at a school, a 40 minute car ride times two with an outing in a different environment, life becomes overwhelming. Hence, we can't visit anyone during the week. Not right now (I predict and hope that sometime in the future it will be much easier). Even a visit from someone to our house through the week, gramps or not, is sketchy. Then we do things out of order or we skip bath or we go to bed late. Disaster. About the friends... Life is different for us than it is for our friends and their typical families. I'll be blunt and to the point. Our friendship checklist has changed in the last few years. We have to be around people who are patient. All of our friends are sensitive but they have to know what they're getting into when our whole family comes over for dinner or shares an outing. And it takes a great deal of patience.

#3: I would like to spend more quality time with Jamie. Without the kids. Without the challenges of parenting two completely different kids two completely different ways. We spend so much time trying to do the same thing, say the same thing, respond the same way, stick to the routine, follow the expected order of things... that there are very few times that we can just have a conversation. Even five minutes. It never fails that someone needs their hot chocolate right now or ding-ding-ding it's time to take a kid to the bathroom. And by the end of the night I'm pretty much done with the spoken language. I'm ready to zombie out and watch the next episode of Game of Thrones and I'm sure Jamie feels the same way.

#4: I'd like Sienna to have play dates with children in her class. I'm seriously lacking energy here. I'm thinking her little cutesy little friends are having play dates while she's not. I could be wrong. It's an important part of her development however. The more exposure she can have to guided play with peers, the better. School play is just not enough. How do I explain all the quirks and reactions she may have, how to prepare her for transitions, things that might cause her anxiety, what to do in a meltdown situation, and how to toilet her whe she's over to have play time? I just don't have the energy and I don't know who would take all that on. Well... That's a lie. We do have one friend who knows Sienna well and we feel very comfortable having her go over for a few hours to play with her same-aged daughter because she provided child care for us for the last year before kindergarten. It's challenging to have kids over here but is probably the easiest solution. I would likely have to guide the play, plan some specific structured activities, and stay closeby to help out with the social skills so they'll want to come back again. It would be best to have her brother be elsewhere. He is a great player but to have him at home when there's another kid here can disrupt the purpose of the play date. He doesn't get in the way for the most part but the extra person/ noise/ negotiating adds to Sienna's stress sometimes. Plus, he's very social and would take over in that department.

I think that's all for now. Just plain old mommy guilt. I had it when my kids were babies and I'll have it when they're paying for their post-secondary educations! I'm pretty sure I'm not alone on this one. 

Cute Autism-isms

Autism is not all bad. Here are some really cute things I adore that autism does...

Sienna used to jump up and down whe she got excited and still does on occasion. It's heartwarming. She expresses her emotions physically and to see her jump up and down, I know she's very happy or excited about something. Thank goodness because I'm sure there are many things in a day that she dreads.

Sienna sings and sings and sings. She makes up her own songs and she has lovely tone. Very rarely will she sing in front of anyone other than us but she makes up either her own words or completely nonsensical lyrics to a familiar tune that she knows. And she literally sings in the shower. Kinda like the opera way. Just like those commercials. I have tried to record some because I love listening to it so much!

Sometimes having to stick to the routine can be monotonous but other times it's a godsend. For example, now that we have practiced the morning routine of getting dressed, brushing teeth and going to the washroom, she will sometimes do these things on her own and then come to my room afterward to surprise me. Cutest thing ever! And it's like Christmas for me!

One of my favourite phrases from Sienna is "Right mommy?" This usually comes when she is telling someone else something that she feels is important. Like for example, telling someone about the rock cycle. We've read this national geographic book many times and she always wants to describe what is happening in the volcano picture. If she was telling someone else about volcanoes or rocks, she would very likely look at me when she's done and say, "Right mommy?" Or sometimes she will tell her dad something that I told her she could do and look to me and say, "Right mommy?" And she always says it in the same chipper tone.

This kid has the memory of ... an elephant? My grandfather? I don't know the saying, but she remembers things in pictures. We went to Canada's Wonderland last year and discussed going back again, she can recite some very particular details of that day -- a year ago. Like how many divers were in the show or what colour her roller coaster car was that day. Sure enough I could pull out a photo and she's right.

This kid loves the water. She loves swimming so much that if she does her little practice dive in the deep end, she is howling laughter before she even comes up for air. Sometimes I wonder how she manages to take a breath. I think about her challenges with body awareness and can see how swimming might make her feel free and weightless. I'm sure it's a relief for her from lifting her heavy limbs and bruising her poor legs on random things. Once we get her into the bathtub, she could stay there for hours if we let her. She loves laying in the bath listening underwater to the interesting muffled noises.

I still get to pick out her clothes. So if she doesn't match, it's my fault! Enough said.

When we get her on her crazy giggle, she won't stop. If we mimic her, she will continue until we are all crying with laughter. And she has the cutest laugh. She doesn't use it often so it is saved for cuteness.

She is a happy child and excited to go places and see new things. She loves animals and reptiles and will be an ant advocate for life. Her fascination with living things is admirable.

Maybe people would say that "every child has these cute little talents" or whatever. But we know these things are just a little bit different for our child. So there... There are just a few of the things that autism does to bring smiles to our faces. 

Thank goodness I'm a teacher

As we are into our second week of summer holidays, I have to commend working parents on the effort they must put into finding appropriate care for their children for such a long stretch of time. The planning, the organizing, the phone calls, the schedule changes. I can't even imagine. What a nightmare! Thank goodness I'm a teacher!

The lack of structure of summer holidays can be difficult for kids on the spectrum. Our first four days were filled with toileting accidents, meltdowns, demands, and a gazillion questions about "what's next". After that transition to the summer break, things have gotten better. We had a few days in a row without accidents and I would say an average, appropriate (haha) number of meltdowns etcetera. She needs to be kept busy and with a fair amount of guidance, that's for sure, but all in all we're doing well at the moment.

I have Sienna signed up for a camp this week and have sent a support worker with her. This is why I say I am so glad I chose the teaching profession. She's having a hard time. It's not very structured and I would go so far as saying it is quite disorganized actually. There is a visual schedule up on the wall, which is something she is familiar with and relies upon, but it is not followed. She is not given preparation for the transitions to the next activity. It's in a huge room that has two other large groups going on with a lot of echoing. Her group plays games and sing songs in a hallway. These are all challenges for Sienna. It won't be a camp that we return to again and I'm pondering pulling her from the week in August that we had planned. This is her first "older" camp with kids ages 6-8. She does better with the younger camps that have more structure and a lower counsellor-child ratio... Even with a support worker. It's unfortunate that it is not more inclusive. I would love to propose to the co-ordinator that I teach these counsellors how to design an inclusive environment. Maybe they'd pay me for that? Lol. Or maybe they'd sign me up for a psychiatric evaluation...

But anyway! Back to being thankful! If I was not a teacher and didn't have summers off, having a child with special needs would be even more challenging. First, where would I find the time to find appropriate camps and meet with the people to discuss our needs and fill out all the extra paperwork that comes with A) having special needs and B) verifying the support worker is legit? Second, how would I ever afford the $600 per week for 6 or 8 weeks that is paid to the support worker? Ouch. That plus the camp fees... And making sure there is someone who is knowledgeable, caring and available to support her each week? Third, and most important, how would Sienna ever get through 6 weeks of camps that are different, with different rules, different structures, different counsellors? Eek. Thank goodness I decided to go to teachers college... 

Plus I love being a teacher too -- just sayin'!

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.

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...