Category Archives: A la casa

DAILY AUTISM – sleep 3/3 : compay segundo or sleep today

This is a 3 part series about SLEEP in our house. Today – Sleep as a schoolkid.
Part 2 – The sleepy train is LATE today.(toddler)
Part 1 – Sleeping like a baby. Not. (baby)

Jeff Overturf Nemo 30001 (1)

Sleep still doesn’t come easy in our house. From the toddler who’s ‘sleepy train’ would arrive but only depart to actual sleep after a lengthy periods of calm after a day full of adventures, by the time Nemo started kindy, things got more complicated.

At about 4, we saw pretty impressive night terrors at random times in the middle of the night. His screams had me bolt to his rescue, find him upright in his bed – to wake him, he basically needed shaking. It was so scary.

Bedtime was getting more complicated too. Mostly alone due to my husbands nightwork, I now faced no more a peaceful downtime but a lot of anxiety and questions – so many questions! – at night.

Autism was still not on my radar, but it was clear that he struggled to ‘digest’ every day’s events and interactions – all these things became more complex now and harder to understand.

Sometimes, not questions but moves were the solution. Nemo would frantically race through the house, banging into walls, jump on the bed, or on the spot. In his room, I could hear him hum, talk, and rumble. He would come out again and again to “check on me”, complain if the house was too quiet, but also if it was too loud. We discussed many imaginary and real pains/itchiness/anxieties.

All this after reading to him, after singing, after cuddles, after dimming the lights, all that jazz. He just could not sleep! I experimented with different physical sleep arrangements, light variations and A LOT of singing, and honestly, more than once I nodded off myself, it was so exhausting.

One day, I installed an old mp3 player with a speaker at his bedside. It had a broad mix of music and we started playing the more calmer albums to see how it would go… What happened was that he would listen to the music until he knew a song and then get up and inform me about it! Not exactly what I wanted.

And then he found HIS SONG.

It was “Chan Chan” by Compay Segundo. The album was on the player. He asked me to repeat it after he heard it once. And again. I put it on repeat and left the room.  When I checked on him later, he was still awake, but calm. Finally, he fell asleep. The (wonderful) Cuban music on repeat had somehow occupied his brain just enough to settle him, but not too much to stir him further. At least that’s what I think. He does not speak Spanish, so I believe the song was like a soothing white noise and it helped him get closer to actually sleep.

We staid about 8 months on that song. It didn’t bother me hearing it waft through our house for many, many nights. Compay Segundo brought peace to my boy and peace to me.

A diagnosis of Asperger’s / ASD and 2 1/2 years of rather troublesome school experiences later, we  have a cuddles&talk or reading routine for bedtime. Now Nemo likes to read for a while by himself, mostly fact books.

“Bedtime” still easily takes about 2-3 hours. Music still plays an important role.

We have a broad collection of music. Nemo sometimes choses himself, sometimes I decide. It works with classical music, but also slow rock and ballads, Nemo likes Sade, Al Green and Elvis (for the last weeks, we are stuck on “Now and then (there’s a fool such as I)”  yep. didn’t even know that song really). Modern music, 80sRock etc, much appreciated during the day, are not working for sleep time at all.  One song, on repeat, until sleep. On days with ‘incidents’, I actually leave the music on, at low volume, in case he wakes up at night. But he hardly ever does.

For us, this works. Although he falls only asleep between 9 –10pm, so still a late bedtime in the eyes of many, my son sleeps most nights ‘like a baby’ (well..) or “like log” as we say, as he can be moved around and nothing wakes him up. He rarely wakes up before 7, so he gets 9 – 10 hours of sleep.

I know how lucky I am compared to many parents of sleepless children, autism or not. I have discussed and discarded the idea of medication for Nemo. I know that for others that is the only solution, at least temporary, and I do not judge them. I believe though, especially for children, that it is important to do this in a medically supervised way, never with ‘over the counter’ products. Children are so fragile and sleep is a precious part in their development, I fear too much medication at a young age will not allow for their own brain to develop pathways to sleep..

I cannot know if one day, music will just not do anymore. For now, I am just thankful to Compay, Elvis and all the others…

daily autism : SLEEP 2/3 – the toddler years Or the sleepy train is pretty late tonight. oh well..

This is a 3 part series about SLEEP in our house. Today – as a toddler.

Before Nemo was one year old, our ‘precarious domestic situation’  (sic), ended and we went into a phase of tremendous changes, adventures even: There were reasons for me to be rather unsettled and worried.  We went on extended overseas travels due to severe family illness and for immigration, we moved house a few times. Finally, we fully settled in Australia and ‘we got married to Awesome’.

Looking back, I believe I managed to do one thing : For Nemo, these were years of safety, activity and presence. He finally slept his nights through. We spend our days outside, on playgrounds, in parks, exploring cities, meeting children, people, animals. Wherever we lived, we played, read and crafted together. Every day. He was a very happy toddler in a happy toddler world.

And bedtime ? The ‘sleepy train’ I had been waiting for in vain for so long now came in the form of clear, understandable signals! So easy : standing one hand holding his head meant “uh, getting tired”; holding his head with two hands meant “ready for my bed !”. And it looked pretty cute too.

Now I remember clearly my parents’ “You’re tired. Time for bed” – always when little me was ready to party with the grownups! (Or so I thought). Not so with Nemo. With or without regular naps in the day, most nights, Nemo was happy to be put in his (travel) cot, and after some bedtime routine, it was ok for me to leave the room. Did he fall asleep ? No.

he would stand for hours in his cot and play with his hair, as if he just needed a bit of ‘a moment’ to think about the day.

My son has never ever fallen asleep while I was reading to him. He would occasionally fall asleep with a song – or the repetition of the same song for a good 20 min – on a very tired day. But most days, he would just stay awake – forever. Peacefully, he would sit or even stand in his cot and play with his hair, like he just needed a bit of ‘a moment’ to think about the day. And that moment lasted an hour or two…I would check stealthily, passing by his half-open door – and he would look right at me, like a little ghost!
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PHOTO: FLICKR VIA KEVINLAW

But actually, I wasn’t worried about it. Ever seen the horror scenes of kids in “supernanny” not going to bed? Exactly. He got lots of sleep with the naps in the day.. Certainly, this would somehow arrange itself ?

Next part : sleep today.. shortly here.
Read here about Nemo, “Like a baby. Sleep.. pretty PLEASE!

Daily Autism : sleep 1/3 – LIKE a baby.. PRETTY PLEASE ?

This is a 3 part series about SLEEP in our house. Today – as a baby. train-cartoon-flat

When Nemo was a newborn, I was fully expecting some sleep deprivation and he did not disappoint: He slept long periods during the day, relatively peaceful when with me, but then got into a fury at what is considered “bedtime”. He had very sketchy sleep patterns all through the night.

Now there were a couple of reasons I wasn’t really thinking this was abnormal. There was the breastfeeding – I thought I would manage to regulate it somehow. I had read that human babies kind of need a 3-month adaptation phase to “life outside mum” – that still makes a bit of sense to me today.

Waking up to nurse him (often..) was no big deal, I went back to sleep quick enough but it did worry me when I could not figure how to “catch the sleepy train” that my clever parenting book was talking about. Oh, he’d catch that train in the day alright, but between 5 – 11 pm, even past midnight..Not a chance. My child was quite a nocturnal creature.

We were also living in what I will just call a ‘domestically precarious’ situation at the time, and it’s true, some days I there was simply too much going on for him to settle down. It was bad.

Autism was not at all at my horizon, but today I think that at least some of it makes more sense. A homeopath ended up deducing that my son was reliving his birth every night! Nemo’s birth hadn’t exactly been a smooth affair for the two of us, and the hours seemed about right, but I wasn’t exactly convinced.

I ended up taking all kinds of measures – that’s what we do when things really need to get better, right? Which one(s) actually helped is less clear in consequence… So was it those homeopathic pearls dissolved in his water? Or the loud white noise from the radio (and it had to stay ON)? What about the swaddle blanket – that I was so ashamed of I did not even photograph him in it once! He smiled once he was firmly tucked up in it. Total bliss!

flannelblue-300x300Today I am more thinking sensory overload with life on earth than inner birth clock on repeat. And I still think any baby might feel like this in the first month, but for my baby Nemo, it was SO DAMN INTENSE. And so it was quite intense for me too.

Our daily Autism – Echolalia or “YES, You already said that!”

“Sometimes the young and beautiful nymph Echo would distract and amuse Zeus’ wife, Hera, with long and entertaining stories while Zeus took advantage of the moment to ravish the other mountain nymphs. When Hera discovered the trickery, she was so annoyed she punished the talkative Echo by taking away her voice, except in foolish repetition of another’s shouted words. Thus, all Echo could do was repeat the voice of another.”   {source}

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Today for the first time, I looked up the origin of the word Echo. To say the least, this is only the beginning of troubles for young Miss Echo, but the curse of having to communicate with someone else’s words certainly is not a new concept in our house. Echolalia, anyone ?

For those unfamiliar with the term Echolalia, here is a good article explaining it. 

Echolalia comes in many forms but one obvious and honestly annoying expression of it is Nemo’s reaction to watching tv commercials with us.

If the ad has been on before and has spurred any sort of comment from me or my husband (well, sometimes you can’t help yourself : ads are so stupid/funny/sexist.. !) – we will hear it again. Echolalia never fails.

Of course, the ad will still be stupid/funny/sexist on tv the 2nd, 3rd or even 20th time, but the comment becomes somewhat redundant. Yes, we laughed, moaned or condemned it in the first place. And the ad hasn’t changed. But you don’t have to say it, right, again and again. It’s done.

Not for Nemo though and explaining this to him has absolutely no effect. Comment will be repeated, every time! The same comment, exactly.

Now some could say, just don’t comment on the ads if it bothers us so much to hear it repeated. But we like commenting on tv, it makes us laugh, talk and discuss things as they come up. So it will probably not change.

TV Echolalia is here to stay.

***

I just found another post about it, at “Just stimming”, she too looked into the greek mythology of Echo. Well is it a curse..?

Quote :  “Echolalia is metalanguage. (..)
Echolalia is what you use when language is too much. It’s just also what you use when it’s not enough.”  {http://juststimming.wordpress.com}

probably a milestone in autism (self) acceptance here

piratebrainZ

Ol’ pirate brain is taking over..

I picked up Nemo the other day from school after “a good day” (according to him and the teacher). After some wild play with others in the bushland close to where we park the cars, we chatted in the car. VERY good day indeed.

We were already home in the garage when he told me that there actually was one “incident”. He told me :

“There was this boy and he was asking me if he could play with the frisbee with us, but it’s not my frisbee so he has to ask K. He kept asking ME so I yelled at him and he said he will tell on me for that.

So I explained to him about my Asperger’s.

I said my brain cannot do just a little exited or angry, it always goes big and loud, I cannot control it! It’s a problem in my brain, it’s my Asperger’s. Then he did not tell on me. It was ok.”

This means A LOT. I told Nemo I was SO PROUD of him. Not only had he actually managed to control himself after getting upset. But he also (am quite aware mostly so not to get into trouble, but still) EXPLAINED, in his words to the child why it happened ! I asked him if he said sorry at all and he said no. Fair enough. Nothing really happened, right. But this still is so BIG!!
(Awesome’s comment to this was also that it would have been a bit wuzzy from the boy to go tell for a yelling, but never mind.. )

One major problem lately has been that Nemo, well aware of his difference, was rejecting the long awaited help in class from the special needs teachers. He also had a few episodes of (minor) physical aggression with kids and was altogether not very receptive to the term Asperger’s. This could also be because one of our friend’s kid (his age) is on the spectrum but is very different and Nemo can’t really handle him as a friend (or only for a limited time). He refused to share the descriptive – “I am NOT like Noel!”

What happened there in school, the explaining of his condition (he told me he did this 2 other times before!)  is a MASSIVE step towards  finding a healthy, accepting attitude to his own condition and I am very VERY thankful he has shown the maturity – at 7 yo – to get there.

This was a very good day and it ended with a very good evening too – he even fell asleep much better than before. One little incident, big consequences.

Aspergerer – Blackout in Queensland

I don’t like to sleep in a completely dark room, for several reasons, and neither does Nemo.

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There were times when I tried to help him feel secure with waking up in a dark room, but with the many other problems we have with even falling asleep, I have long given up on it. It’s no big deal really. We have gotten very low watt night lamps, for both him and me and no one stumbles or gets scared in the dark anymore.

On the day after the tornadoes whipped through regions North of us, we had strong winds here at the coast and on tv they were discussing flood levels. But our lights flickered.

Nemo was in bed, not asleep as usual, so I went to see him to make a blackout emergency plan. I did not want him to freak out and scream the house down. Waking up to his usual “night scares” is bad enough without actual darkness. For both, him and me.

Here is what we did and we will just leave it in place for the future.

On the headboard of his bed, we have a soft toy attached, a musical pullstring thingy we have since he was born. Onto this clown, I hung a strong little LED torch. I told  him to NOT PANIC, but reach for the torch and come and see me, in case I was asleep. We practiced with (not really) closed eyes and giggles.

Literally 5 min later the lights were off (and they would stay off for about 30 hours).

I had gone back to watch the news again, and it took only seconds after everything went out until Nemo shot out of his room and came running to us – clenching his torch.
My husband thought of a battery powered 25 light fairy light thing (they now retail for about $5) from christmas and put it in his room as a nightlight. They use so much less, now, with LED lamps, and will easily go all night, even more. All these gadget cheap torches we picked up left and right? Finally useful.

While darkness is usually an issue even to go to the toilet, we went through the whole blackout situation without any fears or anxiety crisis. I am SO glad this worked.

readerDo you have any measures in place for ‘emergencies’ that could be harder on your child with ASD than for other children?

I certainly will keep this up, and will change some of my own arrangements… Having mostly scented candles to illuminate the house is a bit heavy on the head and a radio without batteries is basically worthless. Happy to say, the blackout only cost me about $ 15 worth of sausages lost from the fridge and a bit of effort to entertain us all without electronic help.

(I know others were not and are not that lucky around us, all the best to them, obviously. )

Yo, the ipad does not cure autism. Now, it looks like I will have to get one anyway…

You don’t have to be ‘anti-apple’ to notice that whenever the media report on the communicative benefits of portable tablets or smartphones for society in general but especially for ‘children with autism’, they are most commonly talking about great apps and possibilities available on the ipad and iphone.
While it is true, that said devices in their respective, newest versions were long on the forefront of invention and applicability, including and especially child-friendly use and even specific applications for kids with autism, I think it’s safe to say that there are now way cheaper and – this depends obviously on the specific needs of everyone – sometimes better alternatives on the market.
Yes, I prefer android devices but I am not making free advertising for ANY company at this point and I am also not “against Apple” stuff. I don’t see WHY I would be?! So while the fanboys and girls can have their petty war about who’s gadget is shinier and faster and awesomener, I just would like to put it out there :
      • There are other devices that can be used to help your child with autism, in school and at home.
      • More importantly though, please do not immediately reach for the pad, when there are still other ways to explore…
laugh-and-learnI think it’s a NO-BRAINER that children are spending WAY to much time in front of screens, this has been observed and reported since the beginning of time, or rather, since TVs became affordable for every household in the western world. But tv was simply not interesting at all times, back then. Now, there are 24 h channels with preschool programs, the internet, the home computer, tablets, and mum’s smartphone (that is, until they finally have one themselves. Say, at 8 years?).
It is actually almost surprising when kids play with toys or outside at all.  I know I personally take the internets over a walk in the park anytime. Not that i am proud about it, just honest.
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They are lovely and they always mean well!
And in the end, they mostly get it right…
On Monday, we had a total meltdown / school rejection when term 4 started after 2 weeks of holidays. I walked straight into the special Unit and this week FINALLY there has been a bit of action and assistance to help me and the class teacher with the daily program in school. The special needs teacher also plopped Nemo (once he had calmed down) into the “chill out room” – with an ipad.
The two ladies who are now going to take turns to look after Nemo  – let’s call them B1 and B2 with a wink to all Australian mums – have both understood the particular problem he has with writing and have already repeatedly hinted that he might end up ‘just typing’ instead of writing. There are laptops in every classroom in my school, and Nemo’s teacher has an ipad for common use too.  Or you know, I might just have to get one.
Now, I am all for high-tech and finding alternatives for learning. BUT : no one has yet assessed professionally what exactly it is that makes hand writing so hard for Nemo. He does not seem to have a physical problem as his fine motor skills are not too bad and he has delivered some writing that is excellent. To me, after many exercises and trials at home, it seems like he needs to WANT to write..only that is hardly ever the case. What I am saying is, I would like to first see if we can encourage and improve his writing in general before giving up on it ?
This is my remark for any use of electronics in the context of Autism children. Yes, I am sure it works, but have other, more personal ways even been explored ? My fear is that there is no coming back from the use of an ipad. It’s just too smooth, too shiny. But it is also NOT A PERSON. And if anything, I do not want to discourage personal interaction and physical skills. Because that’s where Nemo, and most kids with high-functioning Autism need the most support. And I believe : by a person, not a a pad.

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