For all the good days we have had this summer holiday, it was inevitable that things would only deteriorate as Jude got more and more frustrated with our chilled out routines each day. He loves school. He needs the structure and stimulation that he gets from the virtually constant one to one set up her has there and I obviously can’t give this to him at home because of the girls.
So today…oh today, what a day.
Things started bad but this has been a pattern for the last, maybe five days, so it didn’t surprise me. I like to take Emmeline for a walk so she’ll have a nice nap plus we can get out in the sunshine for a while at the same time. My dad came over to join us this morning and had suggested we go to a cafe in town that we love but even before he arrived, I’d had an inkling we wouldn’t make it that far. We didn’t. Jude flat out refused to move off the driveway, lying on the floor for extra effect. Anyway, ten minutes of trying to convince him failed and we ended up back at home, him screaming in his room but dad, myself and Emmeline out in the garden to make the most of the sunshine. There is absolutely no point in talking to him in this mood, so I just leave him to it upstairs.
He’s bored. I know he’s bored. But there is only so much I can do at the moment with zero funds and frankly, an ever decreasing level of energy for this summer holidays.
This afternoon, I thought he was in a more reasonable mood so promised to go for ice creams by the park. It started out fine, we went and fed the ducks, Jude and Emmeline ran across the Common together and then we walked into town so I could get some money out for ice creams. I said (about 900 times) that we would go to the park first and get ice cream on the way home.
Emmeline loves running up and down hills at the moment and Jude found it hilarious trying to coax her in the right direction (3rd picture).
But then it went horribly wrong in a way only a parent of a disabled child would understand. Jude started getting more and more anxious about the impending treat and repeated over and over again that we were going to the ice cream van. I tried to remind him that we were going to the park first but by then it was too late and he completely lost it at the entrance of the park. He screamed and cried like a two year old, shouted at me whilst flapping his arms and everybody stared. I just stood there not know what the best plan of action was. Parents of disabled children have coping mechanisms for every possible eventuality and it’s just a matter of working out which one best suits the scenario you find yourself in.
What made this experience worse was a small group of young teenagers who thought it ok to laugh at Jude. Yes, amazing but true. Not all four of them laughed, just one girl laughed. She then looked at her friend who too laughed on command of raised eyebrow. This is my nightmare. I’m in a big park, I have the buggy with Emmeline in and I somehow have to get Jude back to his safe space at home. I’ve no idea how I managed it but eventually, after much walking off by me and even more screaming on the floor by Jude, metre by metre we made the mile walk home.
This is Jude in all his glory, crying on the floor.
It’s rather ironic that this happened today because following a fabulous trip to the park yesterday, I was going to write about how absolutely lovely a pair of teenage boys had been towards us. Jude wanted on a swing so one gave up his place for Jude to have a go. He even agreed to push him! Then when Jude said he wanted on the big swing (big round swing that seats a few people) and I said we’d go on when there were less people there, the teenager said to me “I’m sure they’ll move up a bit for him if he wants a go too.”
It was such an inspiring visit; I almost felt like a valid member of the swing park community at that moment.
But back to today…what a spectacle. I felt like a freak show. And following such a day…
I have one request – If you see a child who clearly has learning disabilities and they are throwing a tantrum, please don’t stare at them. It’s a certainty the parent already feels awful enough and could literally jump off a cliff at that give moment. Just help by educating your children that not everyone is the same and that some children speak differently, walk differently, play differently, act differently but everyone is as important as each other.
I’m really drained from today. I was feeling confident about all things Jude and it’s amazing how quickly that bubble can be burst into a million drops of stress and anxiety.