tūāwhiotanga – his or her own time and space

I was inspired to write this whilst I was tucking my son into bed. My husband and I tucking our kids in to bed is by far my favourite time of the day because no matter what sort of a day everyone has had, for this half an hour everyone is calm, quiet and together. Connected.  So on this night, just like every other night, it was my turn to cuddle Touristo ‘goodnight’ whilst my husband sang to the Princess.  As soon as I pulled his weighted blanket over him, he pulled my face up to his so he could smoosh our noses and foreheads together (like a ‘hongi’), followed by wedging his arms underneath the weight of my torso.  When he is in this position, he is relaxed and it allows him to still his mind enough to fall asleep. After 15 mins like this I move his arms close to him, tuck them under his blanket and kiss him goodnight.

Whilst I was laying there listening to his breath slowing down and slowly turning into a light snore it made me think about how lucky I am, that I have this amazing little person in my life, and that we have this inexplicable bond.   I then thought about our bond, and it seems nuts…..me and this little person who rarely speaks.  A person who the outside world sees as aloof, but all I see is someone with this extraordinarily rich inner universe. We are like two separate parts of one whole, constantly drawn back together by invisible ropes.   How did we get here?

Then I wondered if we would have this level of bond if he were not autistic…….and we probably wouldn’t.  Let me explain……and I will start with some context………..the best description I have heard of for autism is the Maori word ‘tūāwhiotanga’ which means “his or her own time and space”. This is very much my son (and myself), and that space that he lives in is more beautiful than Pandora. But I didn’t want him to live there alone, so I have spent the last 6.5 years of his life visiting his world to keep him company.  He likes the company.  To do this, I have spent countless hours watching him, trying to understand everything that makes him tick, and then joining in on his terms where he wants me too.  It has taken me years to weasel my unconditional invite into his beautiful world, but it has been well worth it.

The one thing that makes me so sad is that his time and space is beautiful and gentle, but ours is not.  His space is filled with goodness, light and joy.  Our world can be very cruel and not at all accommodating for someone like him.  When he was little, he lived totally within his own time and space……he was so happy.  As he grows older and has started school he is starting to tune into this world more and more…….and he has to do that to work toward independence one day…..but his unbridled joy is getting sucked away little by little.  It makes me sad.

So here I am…..I want this child to have the opportunity to go to school and learn how to be part of the community.  I want him to have the opportunity to learn to live independently if that is within his capacity, and to do that he can’t be on an island and he has to learn how to be with peers.  But to do that…..part of Pandora crumbles.  What does that do to him?

On the other hand, I also dream of entering the US green card lottery, selling our house and moving to Orlando where our expenses would be significantly lower than in Sydney, which would allow me to home-school kiddo and go to Disney every week.  But I can’t teach him the social stuff that he has the opportunity to learn from peers……..plus I doubt my husband would like this plan!  Plus, what would that do to him?

Each day I see a tiny, little bit of that light that makes him ‘Touristo’ being extinguished……I just hope it doesn’t ever go out.

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Forever……with my son (maybe)

So……. I have taken a few weeks away from blogging.  To be honest it has mostly just been due to time constraints as I am now working more days, and I have been spending my ‘down time’ tutoring Touristo in the afternoons.  I have also been in somewhat of an ‘aspie emotional place’ as life has seen a lot of changes in the past few months, and I am adjusting in the best way I know how…..which is at a snail’s pace.

For today’s post, I wanted to write something a bit selfish and cathartic.  That is, my thought process about what ‘forever’ looks like for us post Touristo’s diagnosis.

When Touristo was diagnosed as autistic, one of the first things I had to wrap my head around was……’there is a good chance he will be living with me for the rest of my life’.  At the point of diagnosis, the professionals were rather bleak about his potential and so I kind of made peace with that being what was inevitably going to happen.  When you have a child diagnosed with autism, you are generally given some literature about what autism is, or they may give you the ‘Autism 101’ talk.  Either way, it is the most depressing thing you will ever hear, and is essentially a list of all the deficits your child has in comparison to their typical peers, and all the things that they probably will never be able to do.  So following this, the first place my mind went was ‘the future’ and ‘FOREVER’.

What on earth is our FOREVER going to look like? When you have just been read a list of everything that is ‘wrong’ with your kid, it would be easy to become very scared.  I get that some parents in the early stage get scared by the ‘forever’ of it all.  Except, this isn’t what I wanted for our life together, I didn’t really want to be scared and sad.  What I needed was a crystal ball – that would make me feel better!  I had this unrelenting feeling everything would be fine, but being built the way I am, I needed more concrete proof that it would be OK.  So of course I went in search of a crystal ball.  I can hear people laughing at the insanity of this thought process, especially if they know anything about autism, but I was new to this world.

So off I went to do an insane amount of reading, meet adult autistics, hear about family’s personal journeys etc etc etc…… But the first thing I learned was that every story is completely different from the next. There is no pattern. There is no looking at little Billy at age 3, comparing him to what little Kofi was like at age 3, and predicting an outcome. It doesn’t work that way.  It was also during this mission to find my crystal ball, that my suspicions about my own Aspergers were confirmed.  But my mission to find an effective crystal ball had failed!  Or had it?  Along the way I had met the most amazing individuals and families, and there was one thing in common.  Whilst future trajectories for autistics are super varied, the one thing that is generally true, is that with love and support, the future does not have to be doom and gloom.  It can be amazing and brilliant, as much so as anyone else’s life!

The next part of this thought process was just looking at my son.  I so desperately wanted for him to have the best quality of life, and I was worried that he wouldn’t (because of this list of things that he would never be able to do). First point, the list is wrong…. he is constantly checking things off the list of things that he is not meant to ever be able to do.  He may take a while, but he gets there.  Second point, whether a person has autism or not does not determine quality of life.  It took my son to teach me that.  I look at this kid and he is a happy person, probably the happiest person I know.  He finds joy in the most amazingly small things.  As he grows, I know that no matter what his development looks like, there will continue to be happiness in his life as it is a fundamental part of who he is.

The last part of this thought process was tackling the FOREVER. I mean as a parent, you  expect that you will most likely raise your children and then they will move on with their own life.  Or with kids these days that they might boomerang a few times and then leave when they are 30…….actually, this really isn’t a given.  I know more than a handful of people in their 30’s who are still living in their parent’s homes……and my uncle was still living with my grandmother in his 50s and 60s (sigh).  Ok……..so maybe you don’t have kids and ‘expect’ that they will move out…..let’s change it to ‘expect that they will have the ability to live independently, if they so choose’.  Touristo’s future in this respect was, and still is, totally up in the air.  This isn’t something I grieved/mourned, but I did have to get my head around it.

Then one day I came across a mother with an autistic, adult son who are still very much moving through this world together as a team.  She is dynamic, and he is a sweet, gentle soul.  It is certainly a different relationship than what you would expect from a typical mother-son relationship, but it is beautiful and they have a happy life together.  It inspired me and was a turning point where I thought to myself ‘ if this beautiful soul, this gentle, kind human that I love so much is going to be my partner in crime FOREVER……is that the worst thing that can happen in life?  Is that even a bad thing?……’. I eventually realised that as much as, as a mother you want your kids to be independent, that this may not be our story……our story might be different and if so, it will be just as glorious as anyone elses. It will have a ‘happily ever after’, no matter what that looks like.

Anyhow, since then I have had this picture in my mind’s eye as to what this might look like.  You see I am a planner.  I am rigid and I like to know what comes next.  Uncertainty makes me very uncomfortable and anxious.  So I projected what our family would be doing in 10, 20, 30, 40 years time.  I had decided that in 20 years, my daughter would probably be off making a name for herself on Broadway (as she is very dramatic), and the 3 of us would still be here living in Sydney, with occasional jaunts around the world to watch the Princess perform.  But Touristo would always be with me…..that’s not good or bad…..it just is what it is.  I was very comfortable with this…..it is what I had projected.

Since our last trip over Christmas, I have seen such a massive change in him.  His language is developing, he is becoming more independent, and I am able to teach him at home at grade level using appropriate adjustments.  His future is uncertain again.  Our future is uncertain again.  It’s not out of the realm of possibility that he will function independently.  Then what I realised is that his future hadn’t become uncertain again, it always has been.  You can’t predict or project anything about anyone’s life. Ever.  To try and do so is completely foolish.  The picture of what his/our future is likely to look like will fluctuate throughout time more wildly than crypto-currency.

Now I am not complaining – it is all great!  But it has forced me to get my head around the fact that I have to well and truly destroy any hope of procuring my crystal ball. IT DOES NOT EXIST. I have to become more adaptable and stop planning.  I have to roll with the punches, just live life and take whatever comes.  This realisation has forced me to confront the fact that I need to change…..and I don’t like change.

So that, my friends, is one of the many thought bubbles that has ruminating in my head in recent months.  I already feel slightly better for spitting it out.  I would love to hear from others about your/your family’s stories if you would like to comment.

“So how do you entertain an autistic child on long haul flights when they have limited expressive and receptive communication skills?”

A little while ago, I asked my Instagram followers to send me any questions they had regarding travelling when a member of their travel party is autistic.  This one really hit home, as it is something that I have been adapting and refining to suit Touristo’s changing needs as he develops and grows older.  I answered this via some Insta live posts, but thought I should write some more permanent notes here.  For this post, I am specifically talking about travelling with autistic children, but the same pointers can be adapted for adult travel companions.

My first few blog posts contain some very broad pointers about travelling with autistic children, however I feel this particular point deserves it’s own post because when you are flying long haul it really is where you need to focus the most amount of energy in your planning.  I think I have said this on my site before, but I really don’t find flying with Touristo (or travelling in general) any more difficult than I do with the Princess, but their needs are very different (and this shouldn’t be ignored).  If I chucked a couple of colouring books, some stickers and books into Touristo’s carry on and expected that to entertain Touristo in the same way it entertains the Princess, it would not be an easy, nor an enjoyable flight! He’s just not motivated by those things, and when you are packed into such a tiny space with so many other people, it is not the time to insist he try these activities! If I make the right accommodations though, he is a very easy-going travel buddy.  So how do I entertain ‘Touristo the Tiny Traveller’ on long haul flights?

  • This one is a bit basic, but I do try and travel on overnight flights as much as logistically possible.  I am shattered in the morning because I don’t sleep well on planes, but my children do….. so to eliminate a lot of time trying to entertain the kids, I pick flight times where I think there is a good chance they will sleep.
  • Snacks.  Like many other autistic children, Touristo is particular with food (a trait he shares with his mum).  So I pack all of his favourite snacks – a full tummy eliminates HANGRY.  Now this isn’t rocket science, I know…..but a tip you may not have considered is……..sabotage.  As much as you can, without changing the food so much they will be annoyed is…..make the bits smaller/harder to eat e.g. I chop up fruit salad into teeny tiny pieces which Touristo picks up one by one, thus taking him 20 minutes to eat something that would usually take 5 minutes.
  • Stuff. Touristo likes unwrapping presents. So before we travel, I do a shop for little ‘things’ that he might like and that might entertain him for a few minutes at a time.  I wrap them individually and hand them out one at a time.  This has bought me hours of quiet moments over the years. The sorts of things I buy are all very cheap for example, Disney figurines, sensory gadgets, and just basically cheap (I consider $5 expensive), novel things purchased from dollar stores or Alibaba.com (who have REALLY cheap fidget cubes and spinners etc).
  • Lots of $2 headphones.  This one won’t apply to most people out there, but when I can find something on the in-flight entertainment that he likes, he chews the cord of the headphones.  So I stock up from stores like Daiso, so he has his own and if he destroys them, it doesn’t upset me.
  • Cater for your child’s individual sensory needs. I always take his weighted blanket on the plane, even for day flights because it relaxes him and stops him kicking his legs.  I also take lots of things for chewing, as well as stretchy toys and things that are good for fiddling with.  A lot of the ‘presents’ I take for him, double as sensory things.
  • The good old iPad/tablet.  Goes without saying really that this is not the time to limit access to technology.  If he uses it for 14 hours straight on a plane and it keeps him happy, then “thank you to the late Steve Jobs”.  Some important things I do to the iPad though before travelling are; remove all the internet dependent apps, remove all to the apps that are location dependent if travelling overseas (I am talking about you ABC for Kids), download all of the YouTubes he watches repetitively to YouTube Red so he can access offline, and download as many apps that can be taught through visual or hand over hand instruction.  I know some flights have wi-fi but it is often patchy at best, so please don’t rely on it even if it is advertised as existing on your flight. I also show him the changes I make to the iPad BEFORE we travel.  If he is going to get upset about it, I want him to do that at home not on the plane.

Now these are things that work the best for Touristo.  As we all know, what works for one autistic person, may do nothing for the next….for example, these things would not have worked for me as a child but give me a few packs of post it notes to fold into paper cranes, and a packet of straws to chew and I would have been fine. But they are ideas meant as a springboard to start thinking about what might work well for your family.  Try to get into your child’s head and think about what might work for them.

Comment below if you care to share what works for entertaining yourself/your child on long haul travel.

Why I will never ‘grieve’ for my son being autistic

On his way…..

I can honestly say I have loved Touristo since the moment I found out I was pregnant with him. He was desperately wanted, and from the minute I saw those two lines saying he was on his way, my heart  beat for him.  The only thing I knew about him at that stage was that he was male and that he enjoyed listening to Brian McKnight. Nothing else mattered.

Nice to meet you

So after a lot of waiting and a rough pregnancy, it was time to meet our baby. The labour was very long, and by the end of it I was completely exhausted. Just when I thought I was about to pass out from fatigue, Touristo decided he would grace us with his presence. The moment the midwife gently laid him on my chest was the most beautiful thing I had ever experienced, and I remember sobbing “he’s perfect, he’s perfect, he’s perfect”, over and over. Now to be fair, nobody is perfect but he was just as he was meant to be. In hindsight though he was long and skinny, covered in vernix, his skin was a weird colour……but he was mine and just as he was meant to be. By this point I hadn’t slept in over 2 days and I still couldn’t sleep now because I was so enamoured.

I had just birthed my very much wanted child. He was perfectly healthy and he was mine. I had never felt love like that.

Growing bigger

Right from the onset he had issues coping with the world from a sensory perspective. He needed to hear the steady rhythm of a heart beat to help him sleep. He needed to be swaddled to relax him, and loved touching and mouthing everything he could. But when these needs were met, he was the happiest, sweetest, gentlest baby on earth. It was like someone took all the extra happiness and light in the world and put it in this child, and this light shone out his big, saucer-like brown eyes.

As he grew older he continued to to be this most amazingly gentle, sweet boy. He also wanted to learn everything about the world around him all in one day. He was clearly very bright and inquisitive.

Eventually, we noticed differences in communication and other areas and sought out hearing tests, a speech assessment and a Paed. At this stage we were told he had a moderate speech delay. It wasn’t until a year later he was diagnosed with autism.

Hello autism

Touristo was diagnosed just after his third birthday. The Princess was only a few weeks old, and I remember having her in a baby sling during this appointment. The diagnostician delivered his diagnosis in a way that oozed sympathy, you know……the way you deliver really horrible news. Only, I didn’t think it was horrible. I had answers. Understanding what was going on for him allowed me to make adaptations so he could reach his greatest potential. Because of these answers I would also be able to make adaptations to my parenting that were more fair, helpful and respectful. I wasn’t a failure as a parent, I was just parenting the wrong way for him.

I initially sought refuge in parents’ forums where I was continually encouraged ‘to grieve for the life and child that I would never have’. I found this jarring. What the actual……? My son had not died, he was healthy and exactly as he was meant to be. He was still entirely that same person who nearly burst my heart open with joy the moment I met him. How could I ever, ever grieve someone so amazing? As for grieveing the life that I had planned out in my head …….as I said, the only thing I knew about him during pregnancy (which was when I fell in love with him) was that he was a boy who liked listening to Brian McKnight. Nothing else about him had been planned out beyond that, nor did anything else matter! You take life as it comes to you.

Back then I was a newbie to this world of severe autism and thought maybe I was the crazy one for feeling this way…….but I have now had a few years to mull over these thoughts and am now crystal clear. It is still something I could never do and here is the bullet point list why:

– why would I grieve someone so awesome. Grieving is for when something awful happens like a death….. nothing about Touristo is awful.

– his feelings! I imagined how I would feel growing up having a parent who was so devastated because of the way I am.

– the day he was diagnosed he was still the same awesome guy that I was so in love with the day he was born. I just had new information to help him.

– I am an aspie and know how it feels to be very different and not fit in, especially as a kid. I imagined what it would feel like having my mother grieving for the parenting experience she didn’t have. Kids pick up on that even if they have no words.

I think oftentimes the whole grieving thing is set up around the stage of diagnosis, and whether the diagnosis is presented as something terrible, neutral or good. Diagnosticians have amazing power to use this conversation to set parents up with a much more positive perspective on autism which is empowering for parents and can only lead to positive outcomes for the child.

 

Legoland, Nagoya, Universal Studios Japan or Tokyo Disney Resort – which one do I think is more autism friendly? – Part 2 – Legoland Nagoya

Legoland, Nagoya

Legoland Nagoya is a near new park having opened mid way through 2017.  I want to preempt this post by saying it is written by someone who is not a Lego enthusiast, and we did visit the park on a week day in winter break (unfortunate timing that couldn’t be worked around).

I have mixed feelings about this theme park, but I lean on the side of recommending as long as you can pick a day that is not a weekend, public holiday or school holiday…..let me explain….

Getting to the park is very easy, with it being about a 20 minute train ride from Nagoya Station with no line changes required.  One of the really cool things about this park is, as you are walking from the station to the park there is an overpass.  On the Legoland side you can choose to either walk down a ramp or go down a slide!  It really sets a super fun tone to start the day!  What is not fun though is the massive queue to enter the park…..on the day we were there, it was about half an hour to get into the park even with pre-purchased tickets. My husband and daughter to one look at the entry queue and both wanted to go back to the hotel to chill.  Touristo and I persisted!  The entrance has not been built to handle the massive crowds that Japanese theme parks tend to attract. So, if you hadn’t pre-purchased tickets online, well then, good luck getting in at all.

Once in the park, I picked up a disability card to help with the queues.  It is a very similar model to that of Universal or Disney, so please check out Part 1 for more information on the process.  The issue here that I did not experience at either of the other two parks was that the park seemed understaffed, so there was not always someone to help you at the express lines.  In the end I ended up purchasing a three attraction fast pass which really helped and wasn’t too expensive.  This turned out to be a lifesaver.

The other big glitch was food.  There are not nearly enough food outlets for the hoards of people that descend on this place in peak season.  The queue for Lego shaped fries just did not move, and when I tried to get a burger and fries for lunch at 11.30am, I was told that the wait was already 1 hour!!!!! I must have looked like I didn’t understand because she then repeated it in English….. I had understood the words coming out of her mouth, it was the concept of waiting an hour for food that had me lost!  So we lived on popcorn for the day, until I got hangry and we left.  Touristo as always was a gentleman, I was the grumpy one.

Now this sounds like we had a crappy day right?  Funnily enough, we still had a lot of fun.  The rides are really cute, and are perfect for the age group of about 2 – 12 years old. The other thing that I found amazing was all of the themed play areas which were phenomenal.  When you have a kid who likes to climb as much as mine, then it was worth the entry fee just for these.  Two of these play areas only had one way in and out, so it also gave me the chance to sit out the front and have a few minutes to myself.

So is it autism friendly?  Yes and no.  If you go on a week day when Japanese schools are in session when it is quieter, then I think it is an amazing attraction for families with kids on the spectrum to visit.  At peak times though…..just don’t.  In saying that though, I am thinking that a lot of the issues I experienced here are really teething issues that will be resolved as the park finds its feet……..I hope.

Tip: They are currently building a hotel on property.  If you do have a junior Lego enthusiast I would highly recommend staying on property particularly if the offer early entry and/or a dedicated entry for hotel guests.  For guests on the spectrum it would be really handy to have a quiet room to retreat to when the crowds become too much.  This is particularly important because the park is not very spread out so even when it’s not a peak time it might still feel squishy to someone who has difficulty with crowds.

Legoland, Nagoya, Universal Studios Japan or Tokyo Disney Resort – which one do I think is more autism friendly? – Part 1

So we have just recently returned from our 5 weeks in Korea and Japan, and first up I thought it would be fun to cover a topic that is very near and dear to my heart….theme parks in Japan.  Whilst on this holiday, our family was fortunate enough to explore three of Japan’s big theme parks and I would like to make it clear that all three cater for people with autism in a way that just doesn’t happen in Australia.  All three were really fun in their own way, but if I had to pick one that catered to my family’s needs the best…….well you will have to wait as this is a three part post.

Now to give you an idea of what challenges Touristo faces in theme parks, the big one is queues. He has very little control over his nervous system and is constantly jumping, wriggling, climbing me, wanting to hold my arms and somersault, and trying to pull through the queues.  He is also a ‘bolter’ with absolutely no understanding of personal danger, so if we are walking around a lot he still has to be in his pram and for shorter distances holding hands.  As he is a sensory seeker, the noise, bustle, smells, and sheer volume of people are not things that we have to consider at theme parks that others may well have to.

Universal Studios Japan, Osaka
We spent 2 days here mid-week and it was still jam packed.  Even on the second day when it was raining, the park was still bursting with people and the lowest wait time I saw (with the exception of the kiddie area) was 40 minutes. Attractions such as the Minions ride and the Harry Potter ride still had wait times of well over two hours and at times, edged toward the three hour mark.

This park is quite small compared to other Universal Studios around the world, and one could argue that it has been under-built considering the voracious appetite for theme parks in Japan.  There are a handful of really mind-blowing attractions such as Minions, Spider-man and Harry Potter, which are genuinely world class, but it is insanely crowded.

Do they have ‘fast passes’?
Yes, but be warned a 7 ride Express Pass will likely cost you more than your admission ticket and should be purchased either before you go to the park, or as soon as you arrive because they do sell out.  We took this option on the second day because even with the ‘Guest Support Pass’, we would not have been able to experience more than two or three attractions.  It is also worth noting that the Express Passes have dynamic pricing, so on days of high attendance they cost more that during low season.

Do they have some form of ‘Guest Assistance Card’?
Yes, and of the three parks that we went to I found the process of obtaining one to be the most simple at Universal.  When you enter the park, approach Guest Services and let them know that one of your party requires support during their time in the park.  On both days at the park I encountered staff who had sufficient English skills to be able to assist me if I was struggling in Japanese.  Staff asked me a few simple questions about what difficulties Touristo might encounter and we were issued with a card to present at each attraction, where you are given a time to return for express entry that is equivalent to the current wait time.  You can only be issued a return time for one attraction at a time, hence why I still alternated the support pass with the purchased Express Pass.

How about the food?
Typical American theme park food plus a lot of character shaped nikumans.  If someone in your party is vegetarian or has allergies, you might want to do some research first.  Touristo’s issues with food are more just ‘self-imposed limitations’ due to sensory stuff, and there was more than enough to satisfy him. Ahhh my boy…….just like his mama at the same age.

How well did this park meet our needs?
Fairly well, but to be able to make it doable and fun (queue wise) it was breathtakingly expensive, and even though it was amazing I can’t say that I plan on returning.  This is partially due to the crowds, partially due to the price and also due to the lack of attractions compared to other major theme parks.  I am hoping to visit Universal Studios in Florida in two years though as it seems to be a more affordable park that houses a wider variety of attractions.

A tip
If you plan on visiting this park, please check out this website   www15.plala.or.jp/gcap/usj/ and never, even go on a weekend.  It is a crowd calendar for Universal and whilst it is in Japanese, I still think it is pretty easy to understand even if you can’t read the language.  We were very constrained in what days we could visit, so we ended up there on a ‘medium’ day.  If you have a choice, pick a day that is in the green, blue or white sections.

If you are planning a visit to USJ and have any questions about disability, please feel free to send me an email or hit me up via Facebook.

Part 2 – Legoland, Nagoya coming soon!

Reflections on our 5 weeks in North Asia

So we are back from Japan and Korea……. safe and sound. Whilst I will be writing posts about the specifics of our adventure at a later date, I thought I would start back with a brief post on a few things I have learned over the last few weeks.

One thing that this holiday was good for was being able to exist entirely in the moment. I switched off from work (which is usually constantly in the back of my mind), dealing with the NDIS (Australian disability funding), therapy, and even this blog which is my hobby. This enabled me to just enjoy the time with my family and reflect on all the different aspects of my life. This has given me greater clarity about what I want to keep the same, what I want to set goals around and what I need to ditch.

Another take away from this trip is my view on severe autism. In my field of employment I spend a lot of time reading and hearing about the difficulties surrounding autism. I have always maintained that I don’t think autism is inherently difficult, but it’s hard not to listen to all the noise sometimes. That is not to dismiss the challenges that some people do face, but rather challenge the generalisation that all severely autistic people are challenging as a rule. After taking some time away, I am more sure than ever that my maternal stress surrounding having a severely autistic child doesn’t come from him. When I stripped away having to deal with the government, school, therapy and trying to fit him into a box that other people want him to be……well we were as happy as clams. He was such a trooper and was brilliant at just getting on with things. With the accomodations I made for him, he did better than most 6 year olds on such a big trip.

Lastly, on the last few days of our holiday I noticed how much my daughter was struggling. We were in Tokyo Disneyland and the Princess was having a ball, but at the same time she was desperately missing her friends. My son didn’t struggle in this way. He is happy as long as he has his family. In this respect I kind of see autism as an advantage to travel.

So I guess these are just a couple of musings about my time away, but will be back shortly with some more specific details about our adventure.

Taking a break…..

I was originally trying to write another post before the end of the week when we depart for South Korea, however between work, packing and grabbing last minute essentials, it doesn’t look like there is much chance of that happening.

On Sunday we explained to the kids that the holiday is happening on Friday, so we have gone into official countdown mode.  Luckily Touristo has a firm grasp on the days of the week, so he gets it without me having to pull out the visual schedule. The Princess is still feeling a little unsure about the whole thing and has requested that we go on a “little plane that is the right size for her because she is little”.  Sigh….this is one of those parenting moments where you just need to lie for the greater good and say “of course my darling, we will go in a little plane”, even though your flight is on the largest passenger plane on earth.  We will board through an aerobridge so she won’t see the full scale of the A380.

Touristo has also been surprisingly easy-going about the packing.  I was intending to do that in stealth mode as I usually do, however he caught wind of my plans and barged in on me when I thought he was in the backyard with his dad.  He just kept repeating “packing for holiday, packing for holiday, packing for holiday”, until I stopped him and explained “yes, mummy is packing for our holiday on Friday. We are going to Korea first, and then Japan”. He seemed happy with that explanation and at no time has he tried to drag the bags to the car, nor has he just tried to throw a random pile of clothes in to expedite the process! Winning!

Anyhow, I shall be taking a break from blogging whilst I am away and will hopefully come back with loads of content in the new year.  I will however be posting pictures, videos and short stories from our adventures on Facebook and Instagram.  Hope everyone has an amazing holiday season and I look forward to coming back a more refreshed person in 2018!

Hotel Review – Novotel Melbourne

So you might remember that about a month ago our family went on a last minute, long weekend away.  I am finally getting around to writing a review of our ‘family junior suite’ at the Novotel after a very busy few weeks.

I have mixed feelings about this hotel but I am going try to be objective.  The entrance to this hotel is simply a doorway leading to an elevator that takes you up one floor to the actual reception area. This is not an issue at all if you are arriving by taxi, but if you aren’t familiar with where the hotel is and you are arriving by public transport, finding it might be a little challenging in the daytime when the neon signage is not as obvious.

We arrived at about 9pm at night and I was hoping to be able to get the kids straight to bed because they were super tired after being at preschool all day, and then rushing to get on a flight.  This was not possible because the sofa bed had not been made up in advance, which was annoying as the room had specifically been booked for 4 people.  In the 30 minutes we waited for the bed to be made up, my children had reanimated and it was difficult to settle them back down.

While I am on the topic of the sofa bed…… Touristo was adamant that he and his dad were sleeping in the very plush king sized bed, so the Princess and I were relegated to the sofa bed (pick your battles and all that).  When the sofa bed was made up it had a wafer thin mattress covering a pole that stuck into my back all night.  All up I totalled about 4 hours sleep, and the Princess was tossing and turning all night too.  As a result we were both tired and grumpy in the morning whilst the boys were feeling very refreshed!  Another very small issue, was that our room faced into an atrium and the amount of natural light that came in was very limited, which I guess could be seen as a plus if you are someone who finds it difficult to sleep in when there is any light entering the room.

The room itself was quite nice, clean, newly refurbished and had plenty of space.  The room service menu was quite affordable compared to other hotels and had some decent options.  I also quite liked the small, indoor pool and spa area which allowed me to get some of the energy out of my little people without having to leave the hotel.

Location is also something the Novotel has going in its favour, particularly for business travellers who value being right in the middle of the CBD.  In saying that though, it is also located very conveniently for tourists with many eateries close by and excellent access to trams.

I think if my husband and I had of been travelling as a couple without needing a second bed, my review would have been a lot more positive as we would not have been waiting for a sofa bed to be made up, and the king sized bed in the room was actually really comfortable.  Another thing that affected my opinion of this hotel is that the cost of this hotel does not match the level of quality.  If we had of been paying for the room, Trip Advisor was quoting nearly $400 per night (AU) as the best price on the weekend we visited, when substantially nicer properties cost less (e.g. most accommodation in the Crown complex, and the InterContinental were cheaper and far nicer).

Overall, it’s a perfectly comfortable mid-range hotel if you are travelling as a couple and if you can get a good rate.   If you aren’t getting an absolute bargain on rate, I would shop around as there are some much nicer hotels in Melbourne in that $300 – $400 (AU) per night price range.

In other news, I am in countdown mode to our big holiday to Korea and Japan in 9 days! Very, very exciting!  If you want to follow along, please check out my Instagram and Facebook for far more of an insight into our travels!

See you soon.

 

Look at me when I am talking to you….. otherwise it’s creepy

So today I thought it might be fun to talk about my own experience as a person on the spectrum, opposed to being a parent of someone on the spectrum. Throughout my life I have been called a lot of different names due to my autistic characteristics, but this was the most humiliating….. “creepy”.

I was 18 years old and I had just left high school. My father had helped me obtain an office traineeship with a contact in the industry he worked in. In this workplace I had already been the subject of bullying by other young women who thought I was a ‘snob’ because I couldn’t manage small talk and didn’t understand their interests, but that sort of stuff I was used to from high school (sigh). No, this time the bully was a 60ish year old Managing Director who should have had more sensitivity.

To give you an idea of 18 year old me…… I was super smart, hard working, a great problem solver, a quick learner, reliable and honest. I also happened to be very awkward, socially anxious, could not look people in the eye or make small talk. I generally just answered people with as few words as possible, and never initiated conversation. Now as a 35 year old woman, I still feel exactly the same way on the inside BUT I can fake these skills pretty well on the outside.

So back to this Managing Director…. One day he called me into his office just to tell me that I needed to look people in the eye when I spoke, otherwise it was too creepy. I was shattered! I thought I was doing pretty well to have made the adjustment from high school to work so quickly. Anyhow…… I was desperate to fit in so I tried my best to change this about myself. I started off by making eye contact for just one second, gradually increasing the duration of eye contact. The big problem with this was that it has never become automatic, so I am concentrating of making eye contact instead of listening properly. It’s ok if I am having a casual conversation, but if it’s something complicated or technical I have to look away to listen properly.

These days I work in an environment that accepts my quirks and just lets me be myself. It is much less tiring. I have largely gone back to not looking at people directly when they speak (depending on the situation) and it is freeing. I also don’t try and mask things like my stimmimg, my routines, repetive behaviours or fascinations. I feel as though I deserve the right to be an authentic version of myself, and feel comfortable with who I am. I also think that rather than expecting autistics to change their ‘different behaviours’ via therapy, it should be largely up to the rest of the world to accept people’s authentic self as long as their authentic self isn’t hurting anyone. Just so I am clear, I definitely don’t think all therapies and interventions are bad…. for instance my son has been non-verbal until recently where is now just starting to talk. This skill is super important, as are self-care skills that an OT might help with. But all of the other stuff like stimmimg, routines, eye contact, oddly specific ways of making grilled cheese……just accept people for who they are. Appreciate the diversity in life.

Would love to hear how others feel about this….