Surviving Summer (E16)

Day three zillion and six:
All hail the 50p ball! I had the pleasure of flying solo with the B-boy today (girls were all at their SIBS group), so we headed out to the park. The weather was sunny and tourist-friendly, and on those days early is our ally. Enroute we nipped into the shit everything-is-cheap shop and grabbed a ball. Not balls, thankfully, as has previously happened with B in small spaces ðŸ˜±, but a single throwing ball.
Best purchase in months, I shit you not. Much fun was had at the park in the sunshine lobbing the ball around. It also significantly reduced the number of casualties subject to B's *unusual* hello. There were meltdowns, naturally, but that happened while he was contained in the buggy. My arms are pretty scratched up from having to stop him running into people at the park, but all in all, it was a good trip. It hugely helped that one of the ladies he took a liking to worked in one of the local special schools, and was more than fine with B's brand of unique. Win.
We left as it started to get busy. Managed to get a smoothie in him but nothing else, so hooked him up to his pump for a feed on the way home. I felt highly smug since it dumped down with storm-rain literally ten minutes after arriving back. Quality jammy timing.
It's been a couple of hours and B has insisted on doing All The Things three times over and all at the same time. I reckon there must be a PTSD phenomenon among parents of big sensory seekers- my brain hurts with all the electronic toy noise. The jiggly ball, the hoover and the background baby Einstein DVD don't exactly a melodic harmony make. He's currently throwing the 50p ball around the kitchen and giggling muchly. I'm praying nothing smashes or falls on his head while using this small window of he's-happy time to write.
Also, this popped up on my timeline. An incredible short video by my friend documenting the lives of some of B's dup15 family in the States. It doesn't quite mirror B-he seems to have unusually severe ADHD which is one of the rarer (and fucking exhausting) effects of his chromosome disorder-but the seizure insight is on point. Ugh. B's epilepsy remains uncontrolled and comes in waves. Right now we are seeing more of a type he's not had much of before, and probably more night stuff, which sucks. The vid is def worth a watch.
One more thing-as I was writing this B wandered over with a strawberry and shoved it in my mouth. When I said thanks, he had THE biggest grin on his face. He just totally shared, and seemed to get it was a nice thing to do! I mean, we need to work on the whole social appropriateness thing of maybe-don't-randomly-shove-food-in-people's-faces but I'm welling up. Those moments are how I imagine the Planet Earth people to feel when they finally capture a snow leopard on camera after months of patiently freezing their butts off in the arse end of nowhere. Solidarity those humans, I get it. Well, almost.
Happy Friday guys. Two more weekends left til school. We've got this...
Believe : Living with Dup15q Syndrome
Believe, is a glimpse into the lives of four families, whose child is diagnosed with dup15q syndrome and the different ways this little known syndrome affects each…
VIMEO.COM

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