Five things we’d like you to know

I spoke to a friend today and she had been upset following her friends negative reaction towards her son’s behaviour (he has autism) so I thought I’d compile a list of a few things we’d like you to know as parents of learning disabled children.

 

  • If I say we can’t go to a particular venue, even though we have previously agreed it, believe me when I say it isn’t because I’m trying to be awkward. The reason is probably because my child has woken up in one of his really difficult moods and the thought of taking him to that particular place is now terrifying. A child with learning disabilities can wake up in a funny mood for no apparent reason leading to more frequent melt downs and upset. As a parent, it can be upsetting to put ourselves in this goldfish bowl scenario so please just go with us and let us suggest other activities without questioning our need to change. Example: We had plans to see a friend once and even though Jude was clearly having a hyper/anxious day, we all went. My heart told me it wasn’t the right thing to do so I should have cancelled or changed plans to suit us. But I didn’t – BAD MOVE. Jude had a melt down on entering a busy shop and I literally had to haul him to the side so we could sit down together. He was still fairly young so he curled up on my lap until he could cope with it all.

 

  • When I mention my child is having pretty bad melt downs, please realise that this is nothing like a non-disabled child having a tantrum. It’s SO much more than this. When Jude has a melt down, there is literally nothing I can directly do to help him. When Emmeline has a tantrum, it is normally short lived and I can rectify the problem with a simple action or short conversation because non-disabled children generally tantrum because their choice has been taken away from them or they’re just tired (obviously there are other reasons but my point is you can tell what it is). Jude has melt downs for what appears to be the craziest of reasons and once started, the after effect can last for hours. I have recently found that letting Jude retreat to his room and putting his radio on helps massively. We are fairly fortunate as Jude’s melt downs are few and far between and they are, on the whole, manageable. Some children with autism self-harm during melt downs and because many children with learning disabilities do not feel pain like non-disabled children, seeing this behaviour can be distressing.

 

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Jude chills out in his room, he loves his new hammock swing.

 

 

  •  It’s ok to ask questions. Parents of learning disabled children are strong, like super-strength strong (unless we’re having a bad day when it’s likely we’ll cry at the mere kindness of someone saying “good morning”) so it’s fine to ask questions if you just want to know something. We don’t assume you’re being nosey (mostly) and we actually don’t mind talking about our child’s disability as long as we feel secure in the knowledge you genuinely care. By sharing information, our friends understand more and we can therefore let down our guard a little. Just a little though.

 

  • Just to have our child included in a social activity fills us with joy. Jude was invited to a party not long ago, there was no pressure to attend because the mother knew that it may be too much for him and at the last minute he may bail out BUT he was included. He was treated like a human being. And the look on his face when I told him he’d been invited to a party literally made my heart explode. And being the rather emotionless individual that I am, that takes quite a lot.

 

  • Imagine, next time you are walking down the street, all the sounds around you are individually enhanced, all the colours brighter and more contrasting. What do you focus on? I can pretty much guarantee it won’t be what Jude focuses on. It’s funny because he loves music and when we listen to the radio in the car, Elsa sings along and hums in all the typical places whereas Jude comes in with random little background harmonies that most people wouldn’t even notice. Elsa certainly doesn’t notice them and I only do because of Jude. Jude perceives things totally differently to non-disabled children so please don’t expect a reaction or behaviour from him based on how other children have reacted previously. This doesn’t mean he isn’t happy, or grateful, or pleased about something. He just sees things in his own way. If you try and see what he sees and listen as acutely as he does then it’s amazing what you notice in the world. Through Jude’s autistic brain, he takes in all the minute details of an environment that most people gloss over and this is why he can experience sensory overload. Say for example we’re in a busy room such as a shopping centre. Lights, smells, sounds, even tastes and the feel of things can literally be painful to a child with sensory issues. Jude can often feel his surroundings are potentially dangerous or hostile so retreats into himself for self-preservation, literally blocking out all sensorial input. The lights to Jude are actually an attraction but to some autistic children, they can feel like they’re burning holes into their eyes. For Jude, he is more irritated by sounds but not necessarily loud bangs, more the gentle murmuring of voices found in busy scenarios. All of this internal activity affects Jude’s behaviour and his emotions so if we bump into you in the street and he doesn’t initially reply to your greeting, please just get down to his level and try again. He doesn’t mean to be rude, he just can’t always fathom all this information running through his brain.

 

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Jude doesn’t really look at the images on the TV. I’ve been watching him when he plays his “doors opening” game with the blocks and it’s like he’s just watching the very bottom of the screen, or he doesn’t look at it at all but still sees the colours moving in his line of vision. For Jude, colours and lights are a really calming influence.

 

I’d love to hear your thoughts. A x

 

 

Diary of An Imperfect Mum
Two Tiny Hands
PrettyRaw

Comments

  • Jakijellz on

    This was a really interesting post. I don’t know anybody with a child with autism but it’s nice to have read this so that if I ever do I’m a little more aware. So thank you. ##familyfun

  • Two Tiny Hands (@IsntitprettyKTB) on

    These are all good to know. I know from being a volunteer in Girlguiding that kids with disabilities love being involved in normal kid activiites. We had a few come through our doors and enjoyed being Brownies and Guides and joining in with everyone else, it was great to see the other kids adapting to them and their support too. Thanks for linking up to #familyfun!

  • imummyblog on

    Thanks for sharing this. Its good to have an awareness. What you said about sensory overload was really interesting, I can’t even imagine what that would feel like. When you said about him being invited to a party, that really touched my heart. #familyfun

  • RawChildhood on

    This is a great post and I really enjoyed reading it, you have explained it very well! I’ve been on ADHD and autism awareness courses in the past and looked after children with disabilities, including autism. It can be a minefield and to people who have never had experience of children with sensory difficulties it can be so confusing. Thank you for linking up to #prettyraw

  • Lucy’s Locket on

    I don’t know any children with autism but I genuinely found this interesting and educational.Thank you! #PrettyRaw

    • admin on

      Glad you enjoyed it! A x

  • prettyinplaydough on

    This is a lovely read. Although I don’t know any autistic children, my little sister (who is now a grown up!) had a profound hearing loss and the points are very similar, in particular, that it is okay to ask questions! #rawpretty

    • admin on

      Exactly, people are often so afraid of insulting people but genuinely I like talking about Jude and he loves any opportunity to talk to people!

  • oursweetviolet on

    This is such a lovely post. I never thought about being in a busy shop with a child with autism. Must be such an overwhelming situation for the child. Really interesting to see how each day can be complrtely different. I love the name Jude by the way! Xxx

    • admin on

      Thank you! Yes, you never know when something is going to freak him out. Generally, he’s pretty cool but if in one of those funny moods then anything can set him off. A x

  • Pretty Raw Linky #2 – My New WordPress Site on

    […] linky was Alice’s post over at: Living with a Jude. Alice wrote a fantastic post called: Five things we’d like you to know. I really enjoyed reading this blog post for a couple of reasons; Alice explained autism in such […]

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