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!