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.