Thursday, 9 August 2012

Autism and Las Vegas Don’t Mix

We have three children, very typical in all ways to children of their age but with some particular characteristics.

Our 13 year old son is diagnosed with Aspergers and manages daily life very well, his high anxiety having disappeared since starting a very structured and organised school. Our 8 year old, the happiest of children, just needs some gentle reminding to not still run across roads and to ‘stop, think, move around the object you’re just about to fall over and then go, go go’!

But it’s our 9 year old daughter that has the greatest difficulties. She has a developmental profile that is difficult to neatly shoehorn into a definitive diagnosis. She is described as having tactile defensiveness, sensory processing difficulties, perfectionism, obsessionality, extreme reactions, distractibility and a sense of social frustration. We’re told her behaviours and emotional responses fall within the range for oppositional behaviour, inattention and on the overall Attention Deficit Hyperactivity Disorder index but she’s too perfectionist to be considered for an inattentive ADHD condition and that while her rigid patterns of behaviour and sensory processing difficulties could be considered traits of an autistic spectrum condition she does not fulfil the criteria for Asperger Syndrome.

Going anywhere together as a family of five is never, ever easy or relaxing. So I was somewhat open mouthed and disbelieving when my husband suggested we should take the children on a 17 day road trip around the hottest parts of the USA in one car, together, and mostly share the same motel room. He thought it would be a fantastic experience before our son disappears into the teenage angst of being seen out with his parents and so I agreed with a large amount of trepidation and with the insane belief it would all be ok because it was a ‘holiday’ and families are meant to have fun and relax and love being with each other on ‘holiday’.

Driving around Utah, Colorado and Arizona was indeed a once in a life time chance to see some of the most beautiful places on earth and it was full on and fun but it was not relaxing and although we all love each other to a degree no one could ever understand or dream of, sadly we don’t like being together as a family as it’s so rare that we genuinely get a moment to relax and enjoy each other and it’s heartbreaking to admit it.

Here are the pitfalls and tips we bizarrely hadn’t considered before we left hoping we could - for one time only – be like The Waltons. But then what family goes on holiday and doesn’t come back needing therapy.

Pitfalls – What Didn’t Work

1. The accommodation. It’s really hard to find accommodation for more than 4 people and we often had to share a large motel room with two double beds and a pull out. We should have anticipated the obvious problem with this but didn’t think it through and got upset with ourselves wondering why our expectation of being able to bunk down together didn’t work. Our daughter with sensory processing problems announced on day one that she would not under any circumstances be able to share a bed with her sister or even us ‘as you’ll all crease the sheets’ and then all the other things she couldn’t do such as share the few remaining clean t-shirts with her sister (having touched someone else in the past), allow anyone to put anything down or near the bed she wanted to occupy or touch anything she may have placed in the often cabin fever small motel room. On the few nights we had adjoining rooms my husband and I were often joined by the other children at different points in the night who couldn’t stand the ‘order regime’ imposed on them by their sister.

2. Eating out. Going to restaurants particularly for breakfast is what I consider being on holiday, only when having a good cup of coffee can I relax and face the day. On day one our daughter had a shut down in the first place we tried eat in and it went down hill from there. Nothing was ‘right’ in any restaurant we entered over a 17 day period as our daughter finds it almost impossible to feel comfortable in new places with the mix of people, sounds and smells and before her senses have time to adjust she panics and thinks she can’t cope, runs out, melts down or shuts down (head on table, goes rigid). Hungry, tired and beginning to realise we weren’t going to get any kind of food that didn’t exist outside of a drive thru we weren’t coping either. I don’t think over the entire holiday we actually made it to the end of a meal together as one of us had to take one or two children and leave before the end. 3. Going to any kind of new or busy venues. For some reason, the stupidity of it still surprises me, we decided to go into Las Vegas on not one but two evenings as it was our final stopover before flying home. I can’t quite understand the fascination with a place so devoid of charm but felt we should at least see it. The first night was not a pleasant experience for our daughter but we got away with it, the second night was a disaster. Having taken a taxi to ‘The Strip’ the sheer unbearable bombardment of noise, lights, people and endless stimulation made her feel sick and faint, she sat on the floor with her head covered and the evening was over as I carried her to find a taxi to go straight back to the hotel. We spent most of the end of the holiday going separately to different places depending on what the children could process.

4. Autistic meltdowns and nose bleeds. Sadly but not unsurprisingly our daughter had a number of meltdowns from the stress of trying to keep it all together with all these new experiences. Probably due to the heat, dry air and attitude she had a number of particularly scary nose bleeds. She’s always been susceptible to them but the pressure she puts herself under with the sheer expulsion of emotion was truly horrifying. Apart from ensuring she’s not in physical damager there is very little we can seem to do to help her ‘come back’ or ‘come down’ but not being on home territory and with people listening in the rooms next door, put a huge amount of stress on us all. At one point she had such a violent nose bleed that the blood covered most of a bathroom including a pile of white towels on which she had passed out/fallen asleep on the bathroom floor from sheer exhaustion. We had waited for her to fall asleep as would not have been able to hold her if awake for aggravating her skin further, before carrying her into our bed while I stayed awake to ensure she didn’t bleed again in the night. We then carry on as normal until the next incident.

Tips - What Worked

1. Our son with Aspergers took enough books to read one a day and his music to zone out everywhere he went. We’ve stopped aiming for ‘manners’ and let him read/listen to music if we could eat out and were amazed he would sit for periods of time in the few places we could get our daughter to sit in because he only eats ‘his food’ not everyone else’s kind of food but thankfully the diet coke was endless and everywhere served the only thing he would eat - plain bread or thin cut French Fries. We snuck in a carrot and celery having made detours to find supermarkets that sell the few ingredients he will eat and he was happy ignoring everyone in his own world. He’s a very goal orientated child who decided on ‘a mission’ at the start of the trip, to collect book marks of every town we stayed at and this fine balance of being free to zone out, motels with swimming pools, diet coke, dry bread and book marks kept him happy.

2. A really large car. We managed to space the children out physically so nothing was touching them to set them off.

3. Individual DS players so the three children could ‘zone out’ in the car in their own worlds. Seems obvious but my husband commented ‘why is it that it’s like they’ve had Valium when we’re in the car and the moment we open the doors its meltdown’.

4. ‘Adventure Time’. This brilliant children’s cartoon was on every half hour and was a great distraction and diffusion.

5. On the upside our daughter started to talk about ‘my autistic behaviour’ for the first time. She made some suggestions of what might work for her in being able to go into a restaurant and after a number of stressful trials and errors (at one point me husband had to leave and sit in the car as was so stressed by it all) we came up with a plan whereby our daughter and her dad would enter the café first and take their seats (at a table without any chair behind it so not as to touch our daughter’s chair). The rest of us were then to take seats facing and adjoining her. This often resulted in two or more moves within any venue, sometimes not even bothering to consult any more with staff for the sheer exhaustion of it all and after a glass of wine we were able to ignore the people now watching the entertaining Brits moving around the restaurant.

For all the difficulties holidays like this are wonderful. Seeing our children pick wild raspberries for the chipmunks, play hide and seek in million year old Canyons and roast marshmallows on an open pit fire in Colorado and then fall asleep under the stars was truly amazing. The tough bits were trying to find some space in any 24 hours to spend with your partner and not having to split up as a family in the day or night because one or other child can’t go out for food or can’t share a bed because it just took an hour for her to iron out the creases or take an hour to organise their travel bag so you can’t go to the pool as have to wait for perfection to be completed by which time your husband has taken the other children on a trip somewhere else. It’s a family holiday but one that involves most members having to do things separately. Maybe that’s not such a bad thing but when you’ve been desperate for the company of ‘family’- of some quality time with your husband and just some chilled out time with your children it can be a really lonely experience being together but not sharing each other’s worlds.

Paula Donovan

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