My son, Alex has Sturge-Weber Syndrome (Epilepsy, strokes, glaucoma and severe learning disability) and, when he was 5, was also diagnosed with autism. He was non-verbal until July 2013. At home, he is frequently in ‘destructive’ mode. He will play with the microwave, open the dishwasher and stand on the open door, raid the fridge, or play with water – even filling up the kettle, taking it upstairs to his room, and pouring it out all over the floor. Or he will attempt to escape from the house or garden.
This behaviour is exhausting, coupled with his inability to recognise danger, a tendency to be aggressive when in pain or cross and a poor sleeping pattern.
In early 2013, Alex started attending day visits at Cherry Trees, just a couple of hours at a time. He made himself at home very quickly, although he struggled with some things – like being expected to stay at the table while others finished their food. However, I am grateful to the staff for pursuing this – by employing tactics I would never have thought of (and suffering some bites and hair pulls), Alex now even sits down for most meals at home, which I had thought impossible! He runs straight to the soft play as soon as he arrives at Cherry Trees and also enjoys going for walks to Hatchlands Park. When a visit is due, I cannot tell Alex about it until it is time to go as he wants to go immediately!
Alex loves going to Cherry Trees. Having built up his visits there, he now sometimes stays overnight and I am lucky as Cherry Trees do a bus run to and from his school (Pond Meadow) so he can go to school in the morning then onto Cherry Trees, returning to school the next morning and home that afternoon, happy. His little sister, now 3, benefits hugely from Alex’s absence. It feels wrong to even think it, but she then has no fear that he will physically attack her, I can take her out whenever we want to go (trips out, even to the supermarket or a playground, are close to impossible by one adult and both children). Also, when Alex is around, we bolt the doors to the upstairs rooms apart from his, to keep things safe from him – however, this means Megan doesn’t have free access to her own bedroom and toys, which of course she should have. The house is a different place when Alex is at Cherry Trees as we can completely relax.