I’ve been reading a lot of articles online this week in an attempt to broaden my views, challenge my beliefs and open my mind to other possibilities. In particular, I’ve been reading articles on living with autism (obvs). I’m always afraid that my opinions of life with a child with severe learning disabilities come across as overly negative. That I’m not happy and that life sucks all the time.
If that is the case then I don’t mean it to be so. But I’m not going to lie, having a child like Jude can be bloody hard work at times. Yes, I have phases of resenting families who have what I consider non-problems and I would kill (not literally) just to have a family day out that is NORMAL. Is that such a bad thing? I read a post this week that said parents should stop moaning about autism but I completely disagree. Whilst I love Jude with all my heart, would fight to the death for him, can’t imagine him any other way and wouldn’t change him even if I could, autism is a complete and utter bitch at times. It’s real life to be upset and resentful. When you’re at your lowest, it’s real life to feel you’ve been dealt a crap hand. It’s real life to moan because you haven’t been able to leave the house all week because your child has refused to leave their room. Who wouldn’t complain about this?!
When I started this blog, it was really to document our challenge of finding a suitable school setting for Jude. Remember the days of me bleating on about the council?
I didn’t have any idea of how long it would take to find such a school or even if we ever would. And over the months and eventually years of fighting the authorities, I realised many things about myself. I had several families contact me during the peak of our council fighting days and I often wondered why they chose to ask my advice. What the hell do I know? Haven’t they read my blog, I’m a mess! I know nothing, I cry all the time and frankly, a lot of the time I would quite happily have given up and run off into the sunset. But I didn’t. But now I have a lot more clarity and recognise that I’m a pretty strong person.
World of Jude
Over the years I’ve learnt to love the world of Jude. I spent a lot of time over the Christmas holidays watching his movements and seeing what makes him tick. He is such a fascinating creature with an amazing sense of humour.
His love of ripping and flicking paper around, the way he tilts his head when he’s making things spin. Today he was gifted with a talking cuddly toy thingy and the smile on his face was incredible. We were joking at his school house about buying him a whole gang of talking cuddly animals for his birthday. Not your standard 13 year old boy birthday present but one Jude would be ecstatic to receive.
Jude and I went to Waitrose several times this holiday to ride the lift. The build up of his excitement was clear across his face. The little squeaks he let out as we waited for the doors to open, the anticipation of whether anyone would be joining us for the ride.
It’s an amazing world to be part of and I’m so incredibly lucky to have Jude teach me things that aren’t taught to us “normal” folk. Not giving a damn about what people think, lacking that judgmental gene humans seem to develop over time. Jude just couldn’t care less if you’re wearing the right clothes or if you have three arms. He treats everyone with the same respect as each other. Jude has shown me how joyful the most simple of sensations can be – watching colourful lights dance at the top of your eye line and the feel of water swooshing past you in the bath.
Jude’s world is all about treats, playing at Granny’s house and lining Grandad’s garden furniture along the patio. This Christmas he started paying attention to the cats and would whoop in excitement when our latest feline adoptee, Teddy, would sleep on his bed during the day.
I think for a long time I was guilty of trying to stop Jude from loving what he does. Encouraging him to try and blend in more to the crowd. We’re so programmed to behave a certain way that it’s really hard to automatically shift out of that mindset and not give a damn in the way that Jude does.
Jude is awesome and I’ve certainly learnt to, firstly see and secondly love the world of Jude over the last almost 13 years. What a dull life it would be without him…