Follow my blog with Bloglovin
As a parent, there are hundreds of things you take for granted your children will be able to do. That you’ll play in the park together, go to a museum, a football match, the cinema, birthday parties, the beach; I could go on all day. Things that you expect are just part of being a child. Then, autism comes out of nowhere and flips everything upside down. Those small, everyday things, suddenly become huge milestones that seem way out of reach.
This summer we’ve managed to pass one of those with Jude (hopefully for good!!!). As you can see in the picture above, Jude is walking along the river; happy.
What’s so special about that I hear you ask?
He’s not in a pram!!
Not only that, but this particular walk lasted for 30 minutes, he then played in the park for 45 minutes, and walked for another 30 minutes home.
Pretty simple achievement, right?
Wrong. For Jude, this is amazing. This is life-changing for all of us
Let me explain
Physically, Jude has always been able to go for a walk along the river. To be able to go to the park, to play on the swings, to run around with the other children. Not a problem.
Mentally, it’s been another challenge altogether.
Walking anywhere outside of the house has been a huge struggle Around the age of 2 or 3, trying to get him to walk for a few minutes along the road was a real effort. I guess back then I thought of it as him being lazy, or that he was just being naughty at times, deliberately playing up. Eventually as we pushed him more and more he’d walk sometimes, but given the opportunity would always look to get back in his pram at the earliest opportunity.
The longer it went on, the more we realised it wasn’t the physical side of it that was the issue. It was being able to handle the overwhelming amount of sensory input he experienced the second he stepped outside the front door. The confines of the pram seemed to allow him to cope. It kept him safe, secure, acting as a filter to what was going on around him.
Around the age of 4 it improved for a while. We might be able to walk as far as the park, or walk along the river, but it was always hit and miss. Some days it was a fun exciting adventure, others we’d get 50 yards down the street and he’d be on the floor crying, refusing to go any further.
Two years ago Jude’s anxiety levels increased off the chart, and his self-harming behaviours became more and more severe. Walking soon became an activity he had no interest in taking part in.
The park, in particular, the swings, which had always been such a fun place for him, became an absolute no-go area. The noise of the other children, the sensory overload, was all too much. Even if we managed to get there at a time where it was empty, he was too anxious to be able to relax and enjoy it for more than a few minutes. It was difficult as I knew how much he loved being on the swings, the roundabout, the see-saw. He just couldn’t get himself in a state of mind to be able to enjoy it anymore.
So any trip outside the house would be by car or by pram, and Jude was more than happy to do either. Any attempt to encourage him out of the pram during a walk would be met by a flick of the hand, pushing you away from him, as he settled back further into his seat. He’d much prefer to watch what was going on from there, rather than take part or explore.
When his self-harming was particularly bad we’d regularly go walking in the pram for a couple of hours, or driving around in the car. It seemed to help calm him, and any break from that behaviour was a welcome release for us too
The longer it went on, the more it seemed he’d be stuck in a pram forever. It was beginning to cause a few issues.
Firstly he was getting way too big and heavy for it. He’d been in a double pram since Tommy was born, and by now had completely outgrown it.
Because we were taking the double pram everywhere, it also meant Tommy was becoming reliant on it too. Tommy used to be chomping at the bit to jump out of the pram at any given opportunity, now he too seemed to be getting comfortable being chauffeured around everywhere.
I had my own personal issues to deal with too. Every time I’d take Jude out I’d feel like I was part of a Little Britain sketch. I was Lou to Jude’s Andy.
I felt like everyone was staring at us walking along, wondering to themselves what a 6-year-old was doing in a pram. They’d be looking at Jude, trying to figure out what was wrong with him physically that meant he had to be pushed around. Then, on the rare occasion that he felt like exploring, or maybe he’d just spotted someone with an ice-cream, he’d leap out and begin running around. He’d tricked everyone, there’s nothing wrong with him at all!
Then the looks would turn to judgements about me. What is that dad doing? A few times I’ve had kind members of the general public giving me great advice in passing. Wise, profound words, something like “Don’t you think he’s a bit big for that?”
Back then I used to care what others thought. It really bothered me. I found myself avoiding situations where we might be judged. Trying to make sure if I took Jude for a walk I’d take the least populated route possible. I became way too self-conscious, and I’m afraid to say, I guess I was embarrassed too.
Now, I’m a stronger person. I’m more at ease with myself, and with my children’s autism. I really couldn’t give a f*** about what other people think anymore. I’ve got enough to worry about.
I’m more than happy to explain to people about Jude and Tommy’s autism and why they might be behaving the way that they are. Besides, whenever I was pushing Jude in a pram, there was no time to stop and talk. A halt in the continuous motion might upset him, so t!he risk was too great!
Anyway, back to this summer. As I said already, we’ve had a monumental breakthrough.
We’ve gone from not being able to walk for more than a minute or two without some kind of meltdown, to being able to walk for an hour.
What mind-altering magic have we found to help solve this problem?
A simple Mickey Mouse rucksack that we’ve had for about 5 years.
We fill it with a few necessary supplies to provide some weight. We put it on Jude’s back as we’re on the way out, and he wears it until we reach wherever we’re going.
I don’t quite understand it myself.
We got the idea from school, who do the same thing when they meet us at the front door. Jude will put the bag on until he reaches the classroom. This has had mixed results, but he understands the concept. The mixed results are more about the feelings he has towards going to school.
A few weeks ago I decided to give it a go and walk the few minutes to my parents house.
We gradually started going further and further, and so far it has worked every time.
The bag somehow seems to help him feel more centred. The weight helps him to understand and feel his place within his environment. Maybe it helps him process that he is going on a journey, and the journey ends once he takes it off. Maybe it allows him to feel more in control.
The anxiety that was ever present the minute we stepped outside the door has disappeared. No more desperately looking back for a pram, or waiting by the car door, unwilling to go a step further.
This tiny adjustment, this small milestone, feels absolutely life-changing for us.
It will allow Jude to develop some independence. It will enable him to discover and explore the world around him more. It will mean he can get more exercise, something he really does crave.
It will mean we can stop lugging a pram around everywhere with us. That we can keep Tommy out of a pram and encourage him to be more independent too. That Tommy won’t have to miss out as much on simple things like going to the park.
As I said in the beginning, our walk ended up at the park. We reached the gate, Jude dumped the bag and ran inside without a care in the world. Jude was able to play on the swings. We were able to play on the see-saw together. I was able to take him for a ride on the roundabout.
The smile on his face was a joy to behold. To see him in that environment again, full of excitement and wonder, rather than being anxious and scared.
When it was time to go I showed him the bag. He let me put it on his back and we left without any drama or upset.
Such a small adjustment
Potentially, such a life-changing one