The 2nd in this 3 part series of blog posts, The Daily Toddlers guest blogger Shifting.Ground discusses managing holiday expectations when you are a spectrum family
“Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition which means that, while all people with autism share certain difficulties their condition will affect them in different ways. Some people with autism are able to live independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over-or under-sensitivity to sounds, touch, tastes, smells, light or colours”.
National Autistic Society
Our three children share similar if varying degrees of difficulties in processing information but for our middle daughter they cause great distress. We’re told she has a ‘developmental profile that is difficult to neatly shoehorn into a definitive diagnosis’. Described as having ‘tactile defensiveness, sensory processing difficulties, perfectionism, obsessional, extreme reactions, distractibility and a sense of social frustration’ and that she falls within the range for oppositional behaviour and inattention but that she’s too perfectionist to be considered for an inattentive ADHD condition and that while her difficulties could be considered traits of an autistic spectrum condition she does not fulfill the criteria for Asperger Syndrome.
Our daughter is a pick n mix of behavioural difficulties, a Spectrum Heinz 57, triggered by things we can’t see but none the less for her are uncomfortable and stressful. Anything outside her routine is like an exercise in walking a tight rope without a safety net when you can’t predict what the audience is going to do, where it’s far too easy to fall out of your comfort zone. For us leaving the house is Russian roulette, like parachuting with equipment that may malfunction, you never know how every outing is going to land.
Like everyone else we look forward to going on holiday. We save, we ooh and arrh at the swimming pools we can’t afford and flick to the affordable options, we shop for shorts with the desperate hope they’ll be needed but pack wellies because we know the score and bizarrely although we live with spectrum conditions we often forget this when we try and do things families do together.
But the reality is going anywhere together as a family of five is never ever easy or relaxing so I was open mouthed when my husband suggested we go on a road trip around the hottest parts of the USA in one car ie together as well as share the same motel room. We thought lets do it now before our son’s teenage angst of being seen out with us kicks-in so I agreed with trepidation but the belief it would all be ok because it was a holiday and families have fun and relax and love being with each other on holiday.
So we took the once in a life time trip and drove around Utah, Colorado and Arizona and it was beautiful and full on and fun but it was not relaxing and although we all love each other to a degree no one could ever understand sadly we don’t like being all 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 some of the pros and cons we hadn’t considered before we left hoping we could, this time, be just a little bit like The Waltons.
The accommodation. We should have anticipated the obvious problem with having to share a room as a family, didn’t think it through and got upset with ourselves wondering why our expectation of just bunking down together didn’t work. Our daughter announced on arrival that she would not under any circumstance be able to share a bed with her sister ‘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 (having been touched by someone else in the past), allow anyone to put anything near her bed or touch anything she may have carefully placed in the often cabin fever small motel room. On the few nights we had adjoining rooms the other children came in no longer being able to stand the ‘order regime’ being imposed on them by their sister.
Eating out. First breakfast our daughter had a major ‘shut down’ and it went down hill from there. Nothing was right in any restaurant 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, thinks she can’t cope, runs out, melts or shuts down (head on table, goes rigid, screams). 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 having to take a different combination of children and leave.
Going to any kind of new or busy venue. For some reason, the stupidity of it still surprises me, we decided to go into Las Vegas as it was our final stopover before flying home. 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 we got straight back into a taxi. We spent most of the holiday like this, going separately to different places depending on what the children could process.
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. Made worse by the heat, dry air and altitude she had a number of particularly scary nose bleeds. She has them regularly due to the pressure she puts herself under with the sheer expulsion of emotion but these became 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’. Not being on home territory and with people listening in the rooms next door put an extra stress on us all. At one point she had such a violent 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 exhaustion. We waited for her to fall asleep as would not have been able to hold her if awake for further aggravating her sensory distortion, before carrying her into our bed while I stayed awake to ensure she didn’t bleed again in the night.
Distraction. Our son took enough to read at least one book a day and music to zone out everywhere we went. We’ve stopped aiming for ‘manners’ and let him read/listen to music if we can eat out and were pleasantly surprised 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 his rigid mind will allow himself to eat and his oversensitive sense of smell and touch can tolerate. 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 passed through and this fine balance of being free to zone out, dry bread and collecting kept him happy.
A really large car. We managed to space the children out physically so nothing was touching them to set them off and DS players so they could all retreat from having to process all this ‘newness’. 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 there’s meltdown’.
‘Adventure Time’. Hyperactive/exhausted family sit in silence to watch cartoon for half hour breather.
Breakthrough. On the upside our daughter for the first time started to talk about ‘my autistic behaviour’. She made some suggestions of what might work for and after a number of stressful trials and errors we came up with a plan to get dinner whereby she and her dad would go in first, find a table with a chair – one that wasn’t touching any other table – and the rest of us following in so not to have too much information to process at one time. This often resulted in two or more moves within any venue, we gave up bothering to consult with staff and after a glass of wine could ignore the people now watching the entertaining Brits moving around the restaurant. This doesn’t mean that we weren’t as cheesed off with it as the next person would be, just that this was the only way we could manage to get some time together.
Our children have a range of mild/medium difficulties that means we can, with some extra planning, get a holiday at all. Many ASC families find just going out of the house hugely difficult let alone contemplate a holiday, for many parents getting any kind of respite is almost impossible.
It is possible to help many ASC children navigate social situations but it involves developing tolerance inch by inch. Our daughter is learning how to manage her anxiety when having to do the things most of us do without thinking about but it remains a challenge, a work in progress. A year later I’ve forgotten how out of sync the holiday felt and can cherish the great bits. To see our children picking raspberries for chipmunks, playing hide and seek in million year old canyons and roasting marshmallows in Colorado was very special. The tough bit was 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 for the smell of it or can’t share a bed because it just took an hour for to iron out the creases or take an age to organise their travel bag with all the rules and regulations ordering requires so you can’t get to the pool while you wait for perfection to be completed by which time you’ve found 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 so bad but when you’ve been desperate for the company of ‘family’, for a few minutes of quality chilled out time with your husband and relaxation with your children it can be a lonely experience being together but not sharing each other’s worlds.
Blog post by Shifting.Ground, June 2013
Supporting families with children on the Autistic Spectrum
mASCot enables families to connect and meet others in the same situation as themselves. We are all families from Brighton and Hove and we all use the same schools and services. The support we get from each other has been a lifeline for some of our families and now mASCot has become the strong support network that we all needed but wasn’t available to us locally. The group is particularly keen to reach out to new families who are looking for support or advice but are unsure of where to go.
National Autistic Society
Helpline: Call 0808 800 4104