See the world through my eyes - Here we go
Kiwi See the World - Through my eyes
Rather than write another article on Asperger’s, we decided to keep a running diary on how Michael copes travelling for a year and share some of the problems we face, as well as the successes on our journey as we go. This isn’t intended to be the answer to managing his ASD. The saying you’ve met one person with ASD is correct. You really have only met one person with ASD. Everyone is individual and different. We are sharing our experience of travel, good and bad in the hope that it has a positive impact on Michael's life and will have value to another parent faced with the same or similar issues to our selves. Michael is fully involved in this blog and approves every thing before publishing.
January 2018 A week to go!
Michael 10 is smart, articulate but lacking in empathy, has limited social skills around his peers and has
extremely high levels of anxiety. Faced with the prospect of travelling
around the world for a year backpacking has so far only elevated those fears to
record levels and left Jason and I questioning whether we are doing the right
thing. Here we are a week out from departure and when asked, he promptly
replied “NO” he isn't looking forward to the adventure and “how was he ever
going to be a famous U-Tuber if he can't play the games”. Third world problems
eh.
For weeks we have had sleepless nights where we have had to deescalate
his fears of plane crashes, train wrecks and natural disasters. Learning early
into these conversations that the direct method was going to be the quickest
way to get back to sleep. What if the plane crashes? Will we all die? What if I
survive and you don't? Will I go to heaven? What if I go to heaven and you go
to hell…….?? This pattern being repeated nightly, until we engaged
him in using his favourite media U-Tube to find answers to his own questions, in
a format that he’s comfortable hearing. ‘10 strategies to survive natural disasters’ appeased many of his fears! He has settled on planes and trains
as safe modes of transportation but not boats for now. We have at least eight
months before facing the trip from Malta to Gozo by ferry.
Physically we have seen a shift in Michael's demeanour as
the departure gets closer. He is displaying more repetitive behaviours and
becoming quick to anger and tears. We spend a lot of time talking out what's on
his mind and challenging his thought processes and his elder brother has
introduced some basic breathing techniques to help him get his anxiety back in check.
His brother does it, so it must be cool! After catching him rearranging the
coffee table contents into straight lines, he responded, “I know it's just my
anxiety, I've got this mum” and proceeded to self-talk aloud how to slow his
breathing down. Practising now will hopefully pay off when faced with the inevitable panic in the hustle bustle of major cities around the world.
I have had several different reactions from parents of kids like
Michael, some questioning why we are doing this. I guess we could cushion him
and avoid situations and environments that push him out of his comfort zone. He
would therefore never leave his computer. Life's full of challenges, which are
only going to get harder for him and he needs to learn how to cope and manage
himself accordingly. Learning with Mum and Dad either side of him, is for us
preferable than feeling overwhelmed and isolated in a classroom of peers that
don't understand him. I hope he will by the end of this journey, be better
equipped to control his anxiety and cope with the social aspects of college.
Who knows he may even enjoy himself! Watch this space...…
March 2018 A month in!
I wrote the first part of this diary a week out from our
departure but didn't share as felt I wasn't in the position to offer other
parents my opinion on travelling with a child on the spectrum until I had had
some experience to back it up.
A month in and I feel less equipped to say whether this is a
good thing or not. Some days are a dream, others a nightmare. He has overcome
his anxiety around dying in planes crashes and he really enjoyed our short boat
trip in Malaysia but lost the plot refusing to use public transport after being
so sick and being hospitalised in Kuala Lumper. He has convinced himself that
he got the germs from the tube / bus system and he’s probably not wrong but it’s
not going to be practical taxiing around the world. We appeased his concerns
initially in Ipoh but gave him no other options in Penang and he just had to get
on with it, armed with a bottle of hand sanitiser was fine.
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| Too loud |
It has been incredibly frustrating on occasions when we would have immersed ourselves into a local market with all the sights, smells, ambience and culture. We have made Michael participate but it's clear he hates it. Instead we are dragged around at speed by Michael, who gets angry and shouts at people who knock him or who are in his way. On a couple of occasions, just taking off, leaving us running after him and trying to calm him down.
A month of no gaming, which really is Michael's release and safe
place, we were hoping to see him focus on other areas. Alas no. He can still
talk incessantly about the games, non-stop, even while wandering around a
wildlife park arghhhhh. Wondering if it's a form of punishment for taking him
away from his PS4 or again I'm the safe place to vent his obsession too.
Michael still tells us daily he wants to go home and how
much he didn't want to come to start with. But hey Mum and Dad are on the same
page, there's wine, beer, smokes and at worst headphones to drown him out
and we are hanging in there.
April 2018 5 Top Tips so far
1.
Ditch the label. No one seems to know what ASD
is and they don’t really care anyway. They are fascinated by this tall blond
“handsome’ young man and are going to invade his space anyway with hugs, kisses,
slaps on the back and affection greetings. We have just worked on helping
Michael to understand why the locals are reacting this way to him and to see it
as a huge compliment. Not always easy and we have had to physically hug Michael
and steer him away on occasions as he’s looked murderously at the old man that
has grabbed his arm and pinched his cheek. He’s learning! I proudly heard him
tell a stranger who called him handsome “yeah I know, I hear it all the time “
2.
Ditch the label. It isn’t going to help him cope
with the noise traffic, fumes and being over whelmed in the city. Instead headphones
have been useful,
his fidget spinner in his pocket and reminding him to self-talk to manage his
rising anxiety. Nearly three months on we are seeing less and less adverse
reactions to his environment and he is using his words to communicate when he’s
starting to feel over whelmed and we have supported him to manage it. We are no
longer removing him from the situation, he’s got to learn to manage it.
3. Patience - Anxiety is the biggest obstacle that Michael must learn to control. Watching the affect anxiety has on some of the simplest of tasks from drinking water, eating food, meeting people, appearance, to trying new experiences I've realised just how much control it has over a person's life and just how exhausting it is to be around. He is starting to realise that aggression to manage his anxiety is going to get him nowhere and will only alienate Mum and Dad as well. As a result, we are seeing less physical outbursts and a lot more tears. We have successfully reduced him to tears climbing a mountain, getting lost in a cave, trekking through a jungle where he was overwhelmed by fear of spiders, snakes and undergrowth around him. He stills doesn’t like to stay in older accommodation especially if they are dated with cracks and holes in the walls and is paranoid about ants and other insects getting into his bed. It is incredibly debilitating, but we are encouraging him to push through and manage it and the results have been tremendous. Michael has been so proud of what he has accomplished so far and so are we!
4.
Social interaction – We often catch him longingly
looking at the other local kids at play and he genuinely doesn’t know where to
begin. We have become social coaches for him, initially creating opportunity
for play by inviting local kids to join us in a pool game etc. Now we trying to
encourage him to take the lead and he is starting to have a few successes. It’s
not going to be a quick fix as he engages them for a short while but often
language barrier gets in the way or Michael doesn’t know how to respond and
they disappear. We have taken a few tours with groups of back packers in their
20s and have used them as tools to engage with Michael. Their brash confidence
has rubbed off and he followed them to jump of rocks into water holes, shared
Kayaks with them and even a Thai couple was enough reassurance for him to have
a go at zip lining. He seems to enjoy the company of older people, so we take
it where we can to build confidence and some much-needed time out!!
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| No language required - Just a ball! |
5.
Beerlao
in Laos is cheap. When all else fails have a few beers. Laugh it off and try
again tomorrow………………….
May 2018 Going backwards!
Unfortunately, yes it seems in some ways we have. After Laos
we were feeling particularly smug but then we arrived into Vietnam and the
chaos of Hanoi and almost instantly Michael reverted to how he was 3 months
ago. Screaming at scooters that beep their horns, pushing people that crowded
him out of the way and abusing anyone that got into his personal space. While
we sympathise and understand the reasons for his behaviour abusing and being
rude to people is simply not ok. As a result, we have been forced to put in consequences
including removing his phone.
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| Another pic with a random stranger! |
He has openly
admitted that his worsening behaviour is a new strategy to keep everyone away
from him. If he’s horrible then they’ll just leave him alone. In theory he’s
probably right but as a result we are exhausted with his aggression and
behaviour, mortified and embarrassed by the way he is treating people and it is
having a negative impact on us all. It’s hard to be sympathetic when your being
screamed at and once again Mum seems to be the easiest person to target his
frustration. We decided to allow Michael to use his headphones again in Hanoi
which helped, but potentially dangerous as he needs to be aware of everyone
around him in the chaotic city traffic and congestion. We found ourselves
taking refuge in the Walking street area, where it was cooler, no scooters and
more space to relax and just wander.
Moving on to Nimh Binh, a more tranquil setting was
hopefully going to be easier for him to cope with but by now Michael has
decided that he’s had enough of Asia and is adamant that he just wants to
leave. Realising that the aggressive approach is getting him nowhere again
Michael has resigned himself to tears. Unfortunately for him that approach just
seems to attract more attention from locals that want to comfort and help him
when all he wants is to make them go away.
A traumatic journey on a sleeper train was the final straw
for Michael, who after listening to a man coughing and spitting all night on
our cabin floor lost the plot altogether when faced with a gauntlet of taxi
drivers all bidding for our business. Totally highly strung we are seeing lots of repetitive
behaviours again with every water bottle becoming a drum stick on anything. He
has become paranoid and needs lots of reassurance, going to the toilet 3 or 4
times during every meal for fear of Diarrhoea. We must constantly check his
ears and back for insects and bugs and we have struggled to get him to go in
the ocean for fear of jellyfish or even the hotel pool if it looks murky. His
anxiety is starting to affect us all with even ever patient Dad becoming
frustrated at how restricting his anxiety is to us as a family. We have had to
change tables in restaurants because of an ant on the table, he has feigned illness so
we don’t go out and explore and starved himself rather than try a local dish
because it hurts his teeth.
Tempers have been frayed and we are all starting to get on each
other’s nerves adding to stress for Michael who sees all raised voices between
us as a potential divorce siding with the one most likely to take him home! A much-needed break was required from
travelling to calm us all down, breathe and refocus which we found in Quy Nhon an idyllic quiet setting where we met lovely locals, relaxed and had some
fun. We were fortunate enough to meet
another family also travelling for a year and we made the effort to catch up
daily to allow the kids to play and Michael visibly relaxed and enjoyed our
time there. Abandoning our next intended destination for some extra days
poolside, Michael read books, played pool and built up a rapport with the local
bar staff and seems much more relaxed and ready to move on again.
Trying to stay positive. Two steps forward and one step back
is technically still moving forward. Crossing fingers that Cambodia is going to
be less hectic and we can start rebuilding the ground we lost in Vietnam. Watch
this space!!
An eye opening account Karen. Ups and downs you are used to!!!! Hope the ups increase.
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