Lesley and Dylan’s story
My youngest son, Dylan, eight, has been diagnosed with social communication disorder. We don’t have a formal autism diagnosis for him yet. I also have two older boys. Harri is 11 and is hyperactive – although nothing is diagnosed – and Ellis is nine.
As a baby, Dylan never stopped crying. He was lactose intolerant. He had reflux and colic. He craved attention. We couldn’t put him down or he would scream so we got used to holding him all the time.
It’s been tough on Ellis. In many ways he’s our ‘normal’ child and doesn’t get as much attention as the other boys. I feel mean leaving him out but at the same time he just doesn’t need that level of constant attention.
Life with Dylan is a mixed bag. Some days he is wonderful to be around but others he’s a nightmare. We can never predict what kind of day it’s going to be. He could wake up in the morning and his teddy bear could fall off his bed – and the rest of the day would be ruined.
Dylan loves Mickey Mouse. He’s got all the Mickey Mouse toys but he doesn’t touch them. He’s also into Tsum Tsums, which are little rubber collectable characters made by Disney. He’s obsessed with them. I don’t know what they are for really but you can build towers with them and put them in lines. Dylan spends hours and hours building them into a tower and then he’ll knock the whole thing down.
Having Dylan puts pressure on family life. The boys fight so much and they never grow out of it. Dylan has a separate room but he’ll still take toys away from Ellis and Harry.
Getting out and about his horrendous. If Dylan thinks he’s going into a shop for a sweet or a toy, that’s fine. But if we try to go into another shop, he’s a nightmare. He can’t wait in queues – he’ll say, ‘I need the toilet,’ but we’ve learned that it’s just an excuse to get out of the shop.
When we go into a shop he’ll mess around with the conveyor belt at the checkout or lie on the floor. He climbs onto the window ledges at Asda. We avoid shopping as much as we can but when we do need to go as a family we all come back exhausted.
We don’t visit cinemas as Dylan can’t sit still but we do go to fairgrounds. He loves fast rides. We’ve been to Gulliver’s World, Lego Land and Disneyland Paris. It’s been a big success. He gets such a thrill from the ride but I don’t like them at all. When I come off my legs are shaking, but he’s saying, ‘What shall we go on next?’
We visit museums sometimes. Dylan loves the touchy-feely parts of the older museums, like the World Museum. When we heard the Tate Liverpool had become an Autism Champion and was having an autism-friendly session we thought, great, we can be hands-on and make a mess!
Someone met us at the door of the Tate. The lady said that if we needed anything at all, we could ask her for help. It was a relaxed session; basically an open space with lots of activities and a big plastic sheet on the floor. They’d laid out big blocks of wax and clay. You could make monsters – the wax was softer to use but Dylan preferred the cold clay. When you’d made your monster, you put your model on a projector and the monster came alive on the wall. It was fantastic.
The Tate staff let us stay as long as we wanted, so the kids went back and forth to the projector. They were totally engrossed. The whole session felt warm. There were other parents and kids there and you could tell by the reassuring smiles that they understood how you felt.
We would like more sessions like this but ideally not during school hours. That said, I might be able to get Dylan time off school to attend the next one.
The whole thing was brilliant. The minute we walked in we felt accepted. If Dylan had refused to go in through the door, I think people at a normal session would have stared. To be honest, I don’t think a single person at that relaxed session would have even looked up.
Lesley and her three boys live in Wirral. Tate Liverpool is one of our Liverpool Autism Champions