Today I have a guest post from Alice who writes over at Living with a Jude – a blog about living with a disabled child. In this post, Alice talks about daily routines and obsessions and how they affect day to day life.
I wasn’t entirely sure what to write about this evening but then Jude gave me a big hint as he lay in bed, lining up scrappy bits of paper that he had just torn out of an old note book. Jude has learning disabilities, he was born with microcephaly, global development delay and has (undiagnosed) autism – we have been waiting over a year for the council to formally assess him and confirm this diagnosis.
I wrote an article a while ago about Jude’s autistic traits that often manifest in some pretty amusing, random ways. Weirdies I call them. And I thought I would reflect on them because some of them have changed a bit from my previous article in June
We have had many a strange look, passing judgemental comment and even been laughed at in the park (a few weeks ago whilst Jude had a tantrum) and despite experiencing this for over ten years now, it still really hurts. I have written about a few of our experiences in my blog, the most poignant titled “bad, bad, bad day”
Having a son with learning disabilities means even the simplest activities can be an absolute nightmare, for example if he refuses to leave the house, if he has a meltdown in the middle of town and I have to somehow get him to a safe space or if something suddenly isn’t right in his little world and you have to try and explain to him that we’re fine and we’ll be home soon. I can predict his behaviours now and to be honest, most of the time he’s fabulous but on occasion he is as challenging as they come. The summer holidays for example were pretty traumatic with the lack of constant stimulation and routine but we muddled through and had some great days out.
But apart from the negativity which I try to ignore as much as feasibly possible, having a learning disabled child really teaches you some interesting lessons. Most importantly, it teaches you not to take life so seriously – Jude can find pretty much any situation funny and for someone who gets stressy at times (me), this has definitely encouraged me to focus on the happy and have a “what’s the worst that can happen?!” attitude to life.
So onto Jude’s weirdies…
This was the previous list:
1) If you open your window in the car, he has to open his too. Ditto the sun shield!
2) He needs a plate to eat ice lollies
3) Before he goes to sleep, he likes to play with building blocks in bed. He lines them up according to colour and then moves them around in some strange little coded method only Jude comprehends.
4) Still won’t wear socks.
5) I parked my car facing the house rather than reversing into the driveway yesterday and it freaked him out. All evening, he kept going to the window to look at the car in a kind of “I need to make this ok” situation. I went and turned the car around for him.
6) Glasses must be hidden at all times! As in the reading glasses or sunglasses variety. He can’t stand them. If there is a pair on a table, he will put items all around the glasses so they are no longer visible.
The bedtime block playing has now become paper and little plastic animals. Lying in a semi-dark room with all these little bits on his pillow really seems to relax him so I leave him to it for a while and then take it all away so he isn’t distracted and can go to sleep.
What has definitely increased massively is his obsession with symmetry. There is nothing that can cheer me up more than walking into a room to find a perfectly formed pattern made out of all the shoes in the hall way, or the contents of the fruit bowl. It never fails to bring a smile to my face! Here is his latest symmetry work, literally completed this evening before bed. Mr. Giraffe, Monkey (yes the bear is called Monkey) plus two manky, old shoes.
Lines. Oh boy does Jude like making lines out of assumedly unconnected objects…this is definitely top place on the weirdies ranking list at present.
So there we have it. Jude and his weirdies. It is incredibly hard caring for a learning disabled child so concentrating on elements such as this gives us a less negative focal point. Hilariously, Jude even realises that what he does is amusing and often laughs when you find his line of plant pots or the coins left on the kitchen work surface stacked to perfection.
If you would like to hear more about living with a learning disabled child then please visit my blog – Living with a Jude was created to help people understand disabilities and to bring individuals like Jude into the mainstream arena. It’s very easy to feel distanced from reality but I have found writing about our life really helps and allows everyone the opportunity to discuss anything or ask any questions that they have maybe felt they previously couldn’t ask me. I’d love to hear your thoughts so please drop me a line.
Thank you so much to Alice for sharing her story. If you would like to guest post on Family Fever, please get in touch.