The early days of autism…….post diagnosis.

I don’t quite know why but whenever Touristo and I are out and about at a park we attract people who have developmental concerns about their kids.  Maybe it’s because people get the feeling that I am going to be quite open about our story, or maybe it is just because once you watch Touristo for a few minutes it becomes obvious that he does have developmental differences that they can relate to.  I think people are pretty disconnected these days and are looking for someone to talk to.

Because of these recent experiences, this week’s post has been inspired by a few people that I have spoken to in the last few weeks who have recently had a child diagnosed with autism, are looking into diagnosis or want to know how to support someone whose family is going through this process. So I just want to run through a few thoughts I have about this stage in our ‘journey’ (I freaking hate this word used this way, but it’s really very apt).

“There is nothing wrong with my child, but I do have concerns about x, y and z”
“There is only one thing I can give you a guarantee on and that is, there IS NOTHING wrong with your child.  He/she has been created in exactly the way they were meant to be.  If you have those concerns, they may be wired differently and it is very worthwhile investigating even if it’s just a niggling feeling because they may benefit from various accommodations, adaptations and assistance.  Also, if they are autistic or have any developmental difference, knowing about it will empower you and give you the tools to understand how best to connect, communicate and accommodate your child.”

People’s variations on ‘the doom’ of diagnosis
I have written previously about how I think that in the field of autism, right from the onset, parents are given a really bleak view of what their child’s life and development will be like.  When you look at the description of autism is in the DSM-5 it is this horrible list of impairments, so parents read this and think “shit, this is my beautiful child’s life”.  This is something that really grinds my gears, and I think when any professional is speaking to the parents of a newly diagnosed child they need to be careful to paint a more accurate and positive picture of what autism is.  Parents need to know that whilst autism can present challenges, it can also have great beauty to it with some autistic characterics being unfailing honesty, authenticity, deep sensitivity and a strong sense of social justice. Some autistic people also have exceptional ability in certain fields, or the ability to turn areas of fascination into productive outcomes.  Additionally, perseverating in autism is seen as a big, fat negative, but I have always found it to be particularly useful in my current field of work.  Not many people can stay on a topic for as long as me when I am fascinated!

“Ahhhhhhhh what sort of future are they going to have”
Before Touristo was diagnosed, I had this very rigid idea of what success in life looked like.  I had this idea that I would send my kids to a good school, they would get into a good university, get a good graduate role, make decent coin and then one day have their own family.  Now this may all be still completely possible but Touristo’s unknown future forced me to really consider what a successful life consists of and I have to say, I was so wrong.  I have not been more wrong about anything in my life.  Looking back this idea is so arrogant and so elitist, and was full of me projecting what I determine success to be.

When you really sit down and consider what a successful life is, there is only one thing that is really important and that is happiness, and there are infinite paths on how to get to there.  There are so many different variations on how one can lead a fulfilling and meaningful life, and who determines what meaningful is anyhow?  I am now at the point where I still wonder what the future holds for Touristo but only in the same way that I wonder about the Princess’s future.  I know that they are both loved, supported and will have the opportunity to have meaningful and happy lives.  This may be independently, or maybe not……either way, doesn’t really matter.

“We have to start every single sort of Early Intervention right now to ‘close the gap'”
I know this is difficult because you are scared.  I have been there.  You have been scared by the autism field into believing that your child needs 40 hours a week of intensive therapy ‘to make them normal’, or so they can ‘mask their autism’.   But just stop and take a breather.  No matter what therapy you do, they will always be autistic and being autistic is just as valid as being neurotypical.  Accepting this is very liberating.  For the record, I think therapy can be great in helping kids realise their potential, and I think it is even more valuable for upskilling parents so that they feel confident and capable in assisting their kids at home and making every interaction a learning opportunity.  But there is a middle ground and children still need opportunity to enjoy being a kid.

One last, but probably most important thought.  The day before your kid was diagnosed you probably thought that they were the most perfect creature on earth.  Your finest creation.  When you come out from that diagnostic appointment, absolutely nothing has changed with your child.  Not a thing.  The only thing that has changed is your mindset.

*Note – this is all purely my opinion, but it is all stuff that I wish someone had of said to me years ago.  Maybe it would have helped, maybe at the time I wasn’t in the mindset to hear it – who knows.  I just want to provoke a little thought.

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Autism……what if we moved to a positive rethink?

Anyone who has had themselves or their child diagnosed with autism will probably be familiar with the following scenario. The diagnostician sits down with you with a serious but sympathetic look on their face. There is probably a box of tissues within arms reach, and eventually they say something to the tune of “you/your child has an Autism Spectrum Disorder”. They pause and let the words sink in before going on to tell you that autism is a lifelong disability characterised by…… blah blah blah, listing every characteristic you/your child has as a negative. Suddenly everything you saw as quirky, unique and cool has been labelled as a deficit, and something requiring some sort of therapy to change it. So the starting point in autism tends to be overwhelmingly negative, which to be honest scares the shit out of a lot of people, particularly parents of newly diagnosed kids. One thing I personally found a bit upsetting when Touristo was diagnosed was that about 80-90% of the autistic characteristics the diagnostician noted in him, are traits that he shares to some degree with me. It made me feel like all these things that I found beautifully eccentric about myself are apparently considered odd and deficient by the rest of the world.

Some time has now passed and one thing I have taken away from this is I think how we approach autism requires a drastic rethink, and I feel this is required from the very first encounter people have with professionals within the field.

What if we started looking at a strengths based approach to autism? What if we looked at autistic characteristics in a positive light?

An example of this strengths based/positive approach is something I was daydreaming about the other day. I was wondering what Touristo would be like as an adult, something I am sure many parents do. At the moment he is considered moderate to severely autistic, semi-verbal and cognitive testing is not really accurate due to his severe language delay, but this is changing rapidly at the moment and he is kind of at the point where a very wide variety of outcomes are possible. But just taking his personality into account and not focussing on the unknowns, I thought about what a future employer might say about him in a performance review based on his autistic characteristics that are perceived as ‘deficits’:

– Touristo always comes to work, to work and does not waste time chatting at the water cooler.

– Touristo has a strong interest in his field of work and focuses intently.

– Touristo has amazing processes and systems in place to ensure consistency.

– Touristo’s output is always completed with consistent quality.

– Touristo is never late to work and is a very loyal, trustworthy employee.

– Touristo’s communication style, is clear and concise, not leaving anything open to interpretation.

– Touristo is direct and does not engage in office politics.

– Touristo is determined, perseveres and will consistently apply himself until he has mastered a new system.

– Touristo is passionate and has a strong sense of social justice.

– Touristo is unfailingly honest.

Now of course the point of this is not to try and create a stereotype, it is based off one individual’s strengths and will vary from person to person. I wanted to illustrate that all of these traits stem from characteristics that are listed as deficits in the diagnostic criteria for autism, but I see these traits as things that can be overwhelmingly positively shaped…..I don’t get it.

I just don’t see autism as something that needs to be ‘fixed’. People need to learn to accept and embrace a wider variety of people, and positively harness the strengths that people have.

I would love to hear others’ opinions on a positive rethink of autism on our Facebook page.

We’re off to Melbourne next month…… cashing in loyalty miles / points

So this has been a good week! A whole lot of things with Touristo have finally come to fruition and an extra bonus bit of good news was the opportunity to tack a family long weekend on to the end of a work function that my husband is attending in Melbourne next month.  We haven’t seen our family who live in Melbourne in ages, so it’s an amazing opportunity to reconnect.  My husband’s flights and 2 nights accommodation are paid for, but I still needed to pay for flights for the Princess, Touristo and myself, plus two more nights accommodation. When I researched all of the available flights, they were all super expensive considering it’s a really short flight mostly due to the lack of flexibility around timing.  Since we are saving for our mega trip at the end of the year, I thought we should probably not go.  Then again, whilst I may not be wealthy in terms of money,  I have banked a significant amount of Qantas points this year, and even though I am saving them for a particular redemption down the track, I could afford to use some of them to go see family.

Next step was checking availability. At the time I wanted to fly down the only seats available were in business class.  I really didn’t want to use that many points because the domestic business class seats in Qantas 737s look to be more like what you would expect from a premium economy seat on an international flight, plus Qantas’s fees and taxes are a joke (American’s reading this: the great thing about using points on your airlines is that your fees and taxes are much, much lower).  Not a great value redemption BUT I really wanted to go, so booked business class there and economy return.  When I was selecting seats for the outbound leg I was a little surprised at the 1 – 2 – 1 configuration. Turns out Qantas is using their retrofitted A330s on this route for some flights and I got lucky with their swanky new business class (image at the top of this article).  Now for us this is AWESOME and TERRIBLE at the same time.  For this flight, I am travelling BY MYSELF with my little buddies.  I really don’t know how this is going to go with everyone in their own pod – it really depends on how the little princess takes to the situation I guess.  Touristo will be fine I suspect as long as he has his CARES Harness, but the Princess…..well depends on the day really!  She is a diva so may take to flying in her own pod quite nicely.  But if worst comes to worst, it’s only a 90 minute flight and there is free wine… so I will survive.

Next point of business, booking accommodation for the 2 extra nights….. Once again I didn’t really want to spend much because once again…….big holiday later in the year. But I happened to have a whole bunch of IHG (Intercontinental Hotel Group) points in my account that I acquired from many hours of doing online surveys as well as from prior stays (this is my major hotel loyalty program because it encompasses everything from Holiday Inn Express through to Intercontinental, and I can transfer points to all the frequent flyer programs I use).  I had planned to transfer these into United miles for another big redemption I have planned……but these points have managed to soften the blow of a really nice hotel stay instead.

So, for the cost of fees and taxes on the flights, we have nabbed ourselves a really nice long weekend away.  Please like on Facebook and Insta to stay tuned for a full run down on this flight, the hotels and activities on this trip.

 

Where it all began. Our first international trip with Touristo…

Our first overseas family holiday came about as a combination of my maternity leave, husband needing a holiday, super cheap flights to Japan, but most importantly Touristo was happiest when he was partaking in marathon walks in the Ergo carrier or drives in the car that went on for hours.  At the time we thought Touristo was just an unsettled or colicky baby, but with the beauty of hindsight this was the very first sign of autism and the need for constant vestibular input, and the marathon walks around our neighbourhood were getting boring.  So what better place to walk around than Japan?  I had visited Japan before, plus it was number one on my husband’s bucket list, so I booked the tickets and off we went!

The flight over was an epic nightmare!  I had booked this trip and put zero thought into travelling with a baby.  I had booked a day flight from Sydney to Tokyo and really hadn’t thought about how we were going to divide sharing the baby wrangling, how we were going to entertain Touristo or what to pack in our carry on.  By the end of the day we all got to the hotel extremely stressed, shaken, slightly traumatised and very cranky with each other, vowing to NEVER, EVER get on a plane with children again.  We all eventually passed out from fatigue, and when we woke up the next morning decided that we were going to try and make the best of the next 10 days.

We traded in our voucher for the JR Rail pass and boarded a train to Hiroshima and over the next few days made our way back to Tokyo.  Travelling in Japan was so easy with Touristo, he just hung out super contentedly in his Ergo, had naps, and when he was awake his eyes opened up to the size of saucers so he could take in absolutely every detail around him.  The novelty of travelling also seemed to pique his interest in solids.  Up until this point he had never shown an interest in solid food, but the novelty of different food had him trying EVERYTHING.

By the end of the holiday, none of us wanted to go home.  We all had time to connect as a family unit in a way that wasn’t possible at home, and we had only just seen a snippet of everything that we wanted to see.  I also loved how much easier Touristo was on the road, plus I was stressing the plane trip back home.

The flight home was a night flight and I had booked the bulkhead row with bassinet ahead of time and we formulated a plan as to who would look after what, to alleviate stress.  The most important thing though was reflecting on the really, really bad flight, assessing what went wrong, why and what could be done so we didn’t run into the same issues again.  A lot of this had to do with what we had on hand and easily accessible in our carry-on luggage.  You know what? This time it was a completely different experience.  Touristo got really excited about being on a plane and curled up on my chest and went to sleep for about 8 hours of a 10 hour flight.

This trip was a total game-changer for me.  Both my husband and I had traveled a little before having kids but it was by no means a priority.  Now it is a priority, because getting to see the world through the eyes of your kids is amazing especially in our case because we have the contrast of the Princess who sees the world in terms of Princesses, castles, dancing and fairy tales, alongside Touristo who has a totally unique perspective on the world which is totally beautiful.

Travelling these days requires a fair bit more planning than this to set us up for success as Touristo requires a fair few accommodations, but it is absolutely worth the extra effort because all of our best memories as a family have been made whilst travelling.

Would love to hear some reader experiences of their best / worst / funniest family travel moments in the comments section at https://www.facebook.com/PointHacksandAutismFriendlyFamilyTravel/

If you would like any tips/tricks about travelling please feel free to hit me up via our Facebook page, or if you like this content and want to see more like this, please go to our Facebook link and like the page.

 

 

Tokyo Disneyland Resort – with my little matey Touristo

Aside from the really big moments in my life such as getting married and the day my children were born, nothing has brought me as much joy as time spent with my family at Tokyo Disneyland Resort (TDR).  From the moment you step foot inside the resort, your senses are flooded by happy sights, sounds, smells and feelings.  It is overwhelming in the best possible way. No matter what is happening in your life outside the park, it just doesn’t exist here.

The first time Touristo visited TDR, he was only 2.5 years old.  At that stage he wasn’t really talking at all, and could not attend to anything for longer than a few seconds. Imagine my surprise when we sat down to watch the Dream Lights parade and he sat still as a statue, in my lap, transfixed for the entire duration.  It was MAGICAL – I was a sobbing mess. This may not sound like a huge thing to anyone else but in our world, it was a miracle. He ate everything in the parks and when we went on rides he made all of the stereotypical kid noises that you would usually hear – “wee”, “wow”, “ooh”!  He even sat still and watched “Minnie Oh Minnie” and “A Table is Waiting” – that blew my mind.

The other thing that makes Tokyo Disney Resort so magical is that the cast members are genuinely kind and helpful.  They have great processes in place to make the park accessible for everyone.  TDR has brilliant Disability Services that cater for a wide range of disabilities*, but as my area of knowledge is autism I just want to share some of the things that made it accessible for us:

  • The Guest Access Card – the main benefit is that when you approach rides they give you a time to come back (which is equivalent to the length of the queue), this allows you and your group to wait outside the queue and eat popcorn. Without this, any queue longer than 5 minutes would not be doable.
  • Stroller as wheelchair sticker – this allows you to use a stroller in the same way that you would use a wheelchair.  For us it meant that we could access the disability seating in shows and Touristo could wait for the show in his stroller (he will sit still in there for extended periods) or we could zoom in and sit down just before the show starts.
  • Fast Passes – at TDR the Fast Passes are free and the process is pretty efficient.  To get a Fast Pass you simply take your park ticket to the Fast Pass booth of the ride you want to go on, put the barcode of the ticket into the machine and it spits out a ticket.  This ticket gives you a time range where you can come back and get straight on the ride.  There is an absolute art form as to how to maximise the amount of times you can use this in a day – but that’s a whole other post in itself.

Now these accommodations REALLY help, however there are certain things I have done in the past and have also done when planning our Christmas trip this year in order to make it successful.  I think it is great that attractions are starting to make accommodations, but it’s my personal belief (please don’t shoot me) that individuals and families have to do some of the accommodating too. These include:

  • Plan your visit during off peak times.  TDR has to be one of the busiest attractions ON THE PLANET!  If you go during the northern hemisphere’s summer holidays, expect to wait for 3 hours for some attractions.  Just DON’T DO IT!  Instead pick a quiet time like the second and third weeks of January – a crowd calendar should be able to help you out.  We are going for a few days just before Christmas (which should be moderately busy) to see the decorations etc and for the second week in January (I am hoping we will be walking on to rides).
  • Plan your day.  Before you go to the parks have an action plan.  Print out the map and have an order of what you want to accomplish.  Certain rides at TDR have a fanatical following and run out of Fast Passes by 10am (e.g. Toy Story at Disney Sea), so if this was a ride you wanted to go on then get these Fast Passes first thing in the morning.
  • If you have the budget consider staying in one of the official, on-site hotels of which there are three. The Ambassador is the most affordable (but least accessible), the Disneyland Hotel which is smack bang in front of the Disneyland park, and the Mira Costa, which is super fancy (super expensive) and has a special guest entrance to Disney Sea.  The main advantage to these hotels (besides their incredible locations) is that you get 15 minutes early entry, which doesn’t sound like a lot but gets you at least one coveted Fast Pass, a ride on one major attraction, and has you down the back of the park before everyone else.
  • If your budget doesn’t stretch to one of the Disney hotels, I think it is absolutely essential to still stay in a hotel on the Disney monorail line for quick entry to and from the parks.  This has been invaluable at various times where Touristo has just hit a wall and needs some down time in a quiet room.  My picks for hotels in this area are the Sheraton Grande Tokyo Bay and the Hilton Tokyo Bay (the Happy Magic rooms are amazing).  If you book either of these in off-peak times, a few weeks out from your trip you can get a room from between $150-$200US.
  • Practice queuing before you go.  Use bank queues, Costco etc whatever you can to practice waiting.
  • Prime your kids.  Some people like social stories – I prefer YouTube.  I like to show the kids snippets of what they are going to experience.  I think with this there is a very fine line between showing them enough to make them comfortable with new experiences, versus showing them so much that there is nothing exciting about it.
  • This might go without saying, but buy your park tickets online or if you are staying at any hotel in the TDR area you can buy your park tickets in the foyer.  Don’t buy them at the gate, it’s just one extra queue you don’t need in your life!
  • If you go in the warmer months, pack a change of clothes and a very small towel in your day bag when you go to Disney Sea.  There are musical fountains, they are awesome and if your kids like water they will get drenched.

So if you are planning an autism friendly holiday in Asia, I strongly believe that this is the place to do it.  Stay tuned towards the end of this year as the blog will be covering Touristo in Korea and Japan.

For more information about planning a trip to the Tokyo Disney Resort, please check out my YouTube

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* http://www.tokyodisneyresort.jp/en/bfree/  – provides info regarding all of their disability accommodations

Some days it all just turns to shit….and that’s ok too.

When it comes to autism, I don’t like to think of it as a positive or negative, it’s just a difference. Whilst autism certainly doesn’t define a person, it is completely pervasive and does colour how they experience the world as well as how the world experiences them.

Sometimes these differences lead to amazing accomplishments or beautiful moments that the NT world don’t get to experience, but other days these differences tend to turn things to shit, also in a way the NT world don’t get to experience.

This is where Touristo and I are this week. Touristo’s nervous system is being unkind to him at the moment, and he is struggling to stay still for longer than a minute, which culminated in him escaping from my sister’s house yesterday in a rather grand fashion. I am petrified of him going to school next year.

I on the other hand, have an uncooperative brain at the moment. It will not stop, not for a minute and the anxiety associated with this is stifling. I have a very big work event, combined with some advocacy work as well as finding out where the Department of Education has decided to send Touristo next year (in their infinite wisdom no doubt). All of this stuff are things I have no control over. It is terrifying to someone like me.

As a result, the usually harmonious bond that Touristo and I share is impacted. Neither of our faults, we are both struggling. But you know what? The world works in seasons, and as sure as the world turns, they pass. So for now we are both just holding on tight as we work through it.

Things always get better.