New experiences can be very difficult for children on the spectrum. Frankly it can be so difficult that parents give up on the whole idea.
There are many days when I know I have time to take him somewhere, and I choose instead to stay at home or just go to the park. I get lazy. And with all those hours of therapy, all that cooking and cleaning and laundry, who could blame me?
But now and then I put my foot down and we take a holiday. I throw a little tantrum, spend hours on the internet researching locations with maximum swing and playground-related stop-overs, and strong-arm my husband into actually taking some of his leave. Blackmail is usually involved.
This year we went on a cruise to New Zealand. I love cruises because they involve no time on airplanes, no cooking, cleaning, or housework of any kind, and my son loves the rocking of the ship on the waves. Also the food. Everyone goes on cruises for the food.
During our ten day cruise, we went to Fjordland National Park, and had stops at Dunedin, Akaroa, Picton and Wellington. It was hard, like everything with our son. The tantrums. The fact that we had to form all our day trips around his sensory needs (there had to be at least one or two stops at a swing, and of course the sun had to be avoided at all costs). But it was worth it.
I never know how much Michael retains from our little adventures. In therapy, he mostly needs well over one thousand repetitions of things to learn them. And then I need to redo them another thousand times to make sure that he retains them. If I leave it for a week, he can forget.
New experiences are not a form of early intervention. You cannot teach him all the life skills he needs by taking him to the zoo or the aquarium every day. These things don’t help him with reading, writing, fine motor skills, imitation skills. I appreciate they can do a lot of this for other children on the spectrum, but with Michael our challenge is to get him to even see the animals, or pay any attention to the fish. However these experiences are an integral part of life and I have to believe that some kernel of what he sees remains with him.
I look at all the things we do with Michael as building blocks. Some blocks we drop, and they seem to sink without a trace. I like to think that like an iceberg, they are building up somewhere below the surface, ready to come out when I least expect it. Others come up and lift him up so far I am amazed at how tall he has suddenly gotten.
I separate my memories of these experiences into the good, the bad, and the ugly. Like the good little optimist that I am, I try to do it backwards – I start with the ugly, move on to the bad, and finish with the good.
The ugliest things that can happen on trips for us, all occur at night. Michael’s sleep is ridiculously awful a challenge we are yet to overcome. He usually wakes up for three hours every night. And when I say ‘wakes up’ I mean he is more awake at 1am than I ever am at any point in my day. He acts like he’s just had a double shot of coffee chased with Red Bull.
As you can imagine, when you are in a hotel room or a cabin, the options for entertaining a very loudly vocal three year old at two am are quite limited. So we end up taking him down to the promenade deck where he proceeds to run around making Tarzan noises, without waking anyone up.
It really doesn’t get any worse than being up after only getting about five hours of sleep, and watching obnoxiously free and happy twenty-one-year-olds just going to bed (mostly with each other).
Last time Michael got up at 1:30, a man in the lift who was on his way to bed cheerfully remarked to me ‘is he having trouble falling asleep? Aww that’s ok. Maybe just give him some warm milk and he’ll fall asleep just fine.’
I think the look I gave him reminded him of the fragility of his existence because he went quite pale and left the lift on a different floor to the one he pressed.
New experiences, especially out in public, can be disasters. Michael might scream all the way there. He might hate being in his pram, but also hate the sun, and at the same time hate his hat, so that there is nothing I can do about the screaming other than strap him in and get him there in one piece. There’s the funny looks as I need to get the iPad out just to get my son through the bus ride. And of course once I get there, that’s when the real work begins. Where I have to follow him within arm’s reach at all times while other children, even those half his age, happily toddle around while their parents chat and have lemonade.
I remember when we visited Picton, there was a duck pond there. My husband went to hire a little boat so we could put it on the water and see if Michael cared or noticed. I saw him happily running around and relaxed for half a minute. At this point my son (who I’m convinced thinks he’s at least semi-divine) tried to walk on water. He seemed genuinely surprised to be sitting on the bottom of it dripping wet instead of striding on it in the manner of Jesus. And he was very upset with me when I started taking off all his wet clothes, all the while laughing so hard I could hardly move my fingers.
Many more ‘experience’ blocks sank. Every time I pointed out a beautiful view on our cruise, Michael ignored it. A pretty boat. A model train. He would look at them but he wouldn’t see them. Everything that little children (including those with autism) are supposed to like he just ignored. I wish he would just hurry up and get a special interest to obsess about. Block stacking can be heart-breaking work.
After paying a ridiculous entry fee we went into an aquarium that rather resembled an over-hyped fish tank. And of course Michael cared nothing for the fish or the penguins. Everything that other children loved, left him cold. He did really enjoy licking the glass though, and running up and down the ramp. And it kept him out of the sun without needing to keep his hat on. Win for us!
But then straight after that we took him to a carousel, strapped him into a rocket all by himself (for the first time) and watched his huge smile as he zoomed off. Not the slightest trace of fear (I’m still not sure that was a good thing). Our little future pilot was so thrilled we put him on again.
And it’s the moments like that, where you try something new and it brings that happy grin to their faces, that make everything else worthwhile. That is a smile he would not have had without our trip.
When the Bad Turns Into the Good
The best moments however happen when a block seems to sink miserably, and then just kind of shoots out of the water, and hits you in the head. Like hey mum, what, you think I’m not learning? I’m learning all the time, just in a different way.
A moment like that happened to us when we were in Wellington Botanic Gardens. Michael hadn’t been happy that morning, after having to sit through Wellington peak hour traffic and then sit in line for the cable car (nobody puts Prince Michael in a queue!).
We took him to another duck pond (this one with railings, because I learn from my mistakes) and at first he ignored it. While the other toddlers fed the ducks and pointed, Michael just seemed to look through everything.
And then it happened! Some pigeons were attracted by the bread that the kids were feeding to the ducks. They surrounded Michael and he thought they were trying to play with him. So he started trying to play chases with the pigeons! I can honestly say that Michael is the only person I have ever known that has ever seen anything positive in a pigeon (flying rats eww).
The Importance of Perseverance
There are many times when I have given up on the whole ‘new experiences’ thing. And my son doesn’t mind change in routines, and doesn’t have very significant sensory issues, so I can only imagine what other parents go through. I think the important thing is that even if you do give up, that it’s only for a while, and then you rest and carry on again.
It’s important for your child, so they have some good memories and the opportunity to find some new special interests. It is important for you because you also deserve to see beautiful things, and seeing your child enjoy something for the first time is the most beautiful of all the things you can see. And it’s important for the world around us because if we hide ourselves and our children away until we actually can’t avoid it, no one will know.
If our children are always at home or in special schools, then no one will understand what autism is, its strengths or challenges. People will continue to say that it’s just ‘bad behaviour’ if they don’t see us out and about. We can’t expect people to be understanding or support us (especially other children and parents of NT children) if they have never seen it or had anything explained to them. So come out of your shell everyone! I challenge you!