This is a mum’s story about living with three teens with autism and their adventures on a family outing.
Let me introduce our family. There’s four humans: me (aka Gothmum – I am the grown up and leader of the tribe), Boyo who’s 16, Bob who is 13, and Ponygirl is 11.
We live in an average suburban house in an average suburban street; but that is where the averages end. The humans all have autism: that’s definitely not average, and the issues we deal with and the struggles we negotiate will be the basis of a bit of a planned blog series.
In a family like ours, the amount of planning and assistance that goes into a Family Outing is immense. I can’t just decide that the weather is perfect for a … well, whatever your favourite family activity might be. Weekends are not for activities but to detox from the sensory overload of the school week. And ‘spontaneity’ is akin to a swear word in our home. Even a minor change of plans can produce a level of turbulence more like a cyclone.
Ponygirl and Gothmum are members of the Zoos, and we visit one of the Victorian zoos at least monthly. Ponygirl determines which zoo and what exhibits we will admire prior to each visit. She also plans our picnic lunch and where we stop to eat it. Ponygirl knows everything about the animals she has selected for us to visit and she has no compunction about correcting a misinformed member of the public when they get a fact awry. At the zoo no one would ever guess she struggles with “selective mutism”. Whilst Ponygirl and Gothmum are gallivanting around one of the zoos, Boyo and Bob stay home with a disability support worker.
Every school holiday I plan one family day out. That’s a total of 4 family days a year. The events are carefully chosen to provide a mixture of pleasure and some challenges to the attendees, and the planning for each outing begins almost as soon as the one before ends. I have to work out distances to travel, times down to the minute, and EXACTLY what we will do/see/experience. We can’t leave anything to chance, such as a traffic jam on the Westgate freeway, and it is imperative that cola rations be available at each location. And no, the cola rations cannot be from home. It’s not worth the meltdowns. One must pick one’s battles.
Over the summer school holidays we visited the Melbourne Museum. Ponygirl loves going on these types of excursions. Her anticipation built over the weeks leading up to our outing. Sadly, I needed to constantly remind her not to talk about it as each mention increased the stress and refusals of her brothers. I booked two specifically chosen DSWs to accompany us. The workers were selected based on personality, relationships with the trio, capacity to take responsibility and make appropriate snap decisions. The workers also had to be people the trio were comfortable with and who drove carefully in clean cars. A 15 minute ride to school is tolerable in less salubrious vehicles, but when spending about 3 hours to get to a destination with some high sensory output, there is much less tolerance for other sensory loads.
So, on a very hot January day, along with a parent and two DSWs, 8 i-devices, 3 3DSs, 7 complete changes of clothes, 5 backpacks full of sensory toys in addition to the adults’ bags and two thankfully air conditioned cars, we set out. We had to take separate cars because the brothers have a difficult time together. The calming strategies that soothe one are the exact behaviours that set off the other’s agitation and vice versa. I was also very aware that one of the boys would need to leave early. So as not to disappoint the others, or make the excursion impossible for anyone to enjoy, this is the level of assistance it takes.
Despite some interesting traffic conditions both cars arrived within ten minutes of the preordained ETA. Ponygirl was excited, Boyo was apprehensive, Bob was in massive refusal. It was time to make the deal. All Bob had to do was come into the museum cafe where a cola ration would be purchased. He did not have to walk around the museum. Just getting him there was enough.
Within a few minutes of entering, Issue #1. Bob needed the toilet. To get to the toilet meant walking along a glassed gantry. A beautifully designed airy, sculptural space, but one which Bob has a major aversion to. Combine that with his aversion to actually being comfortable using any toilet away from home and we hit meltdown territory. He ran. He grabbed an upright girder in an iron grip and screamed. There was a worker with him and another with Boyo as I accompanied Ponygirl to the restroom. The resultant melee brought the attention of security staff, who seemed to think that Bob was being attacked. Gothmum to the rescue, and some quick reassurance to security staff and a longer reassurance with Bob, we managed to line up for tickets. Three companion cards and some great assistance and info from museum staff, and 2.5 hours after leaving home, we got to the museum cafe. With the cola ration completed, Bob and one of the DSWs returned home. A successful outing.
Two adults left with two young people and we got to explore some of the museum. Ponygirl loved the Indigenous people’s exhibition and we watched a breathtaking dynamic sculpture and light show telling an Indigenous Australian creation story. Meanwhile, Boyo sat on a tactile rest area with his devices. We visited many of the galleries, with Gothmum and Ponygirl looking at each exhibit and reading and discussing every descriptive label. Boyo and worker stuck their head into each gallery and then retreated to a rest area. We spent a total of 2 hours in the museum then went back home via a highway truck stop for a frozen cola drink.
For many families our outing would have been described as a nightmare or a huge waste of time. It was in fact a hugely successful event. We had an outing for the whole family, with each person being challenged but also achieving a mega step forward. In my world, even baby steps are significant. Initially requesting something very challenging and then bringing the mark down incrementally allows everyone a level of experience whilst also acknowledging the difficulties each person has. Everyone who came on the outing was congratulated for doing a great job.
Without the right support workers the concept of a family outing is impossible to conceive. Without flexible funding packages, there would be no family involvement in the community at all. Before the NDIS I didn’t even entertain such an awesome family day out, and it’s taken some years of family members becoming comfortable with workers, and workers feeling capable of assisting the family, but finally, we are beginning to enjoy the things that ‘regular’ families in our community take for granted.
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