I thought it would be interesting to look at how life differs in terms of day to day activities with Jude away for the week. I know there is the immediate and obviously impacting difference that I have gone from three down to one child but already, I have seen differences in how we live.
Firstly, this morning I was able to have a shower!!! Sounds ridiculous but when I get up normally, it’s 100mph from the moment my eyes open. With no Jude around, I was able to have a shower and actually get myself ready for the day. I even put some make up on! Secondly, breakfast…I made our food and we sat down together at Emmeline’s little table to eat, it was so lovely to be able to sit down for once for my breakfast and socialise with her (as much as you can with a one year old!) at a leisurely pace. I normally eat spoonfuls of left over porridge from the cooking pot as I fleet from the kitchen to the living room, to the kitchen, to Jude’s bedroom, to the front room, to the kitchen, etc. I wonder how many miles I walk a day!
I can actually feel my heart beating at a slower pace as I sit here and write this blog in the middle of the day (not possible normally). I do not feel stressed or anxious which is something I have been experiencing more frequently of recent – bit of a worry. We are able to act sporadically and choose to do things on the spur of the moment. Anything. Literally. We can do whatever we want and not have that slight feeling of dread that it’s not Jude-friendly or that he might have a hissy fit so we have to leave early or split up as a group so one can take him home again. Life is just more relaxed and easy.
Here was my beautiful view at lunchtime (again, sitting down to eat!)
But easy is boring, right? Despite Jude being a complete pain in the butt, I actually miss him. I miss the chaos and craziness he brings wherever he goes and genuinely I miss his funny behaviour in public because the older I get, the more amusing I find it watching other people’s reaction to his random questions…”what are you doing?” and “are you going home yet?” are two of his current favourites.
Something I reflected about earlier, is the notion of teaching boundaries to a child with learning disabilities. I have no idea why this came to mind but it’s something I have thought about quite a lot, especially today. Jude has a very limited understanding of boundaries in terms of what they consist of or even what the idea of boundaries means. Boundaries are instilled in us at a very early age, sometimes without us even realising it’s happening…we’re taught personal boundaries, relationship boundaries, behavioural boundaries, social boundaries, etc. Jude struggles with the whole lot. He has very little comprehension of personal space and sometimes stands really close to people, he has no idea of social boundaries and constantly interrupts speech, ignores people, wanders off mid-conversation, he can’t share ANYTHING to save his life.
It’s something I worry about a great deal actually. Once when I was abroad visiting a family friend, we were in a shopping centre and this man got in a lift with us and stood sooooo close to another guy. This guy got quite angry and literally pushed the first man away and it was then that my friend realised he was disabled and probably didn’t know he was doing anything wrong. We intervened and helped the man find the floor he needed (even thought he was fine on his own, we just wanted to make sure he was safely away from the other man who hadn’t even twigged there was something awry.) Anyway, what if this happens to Jude one day and someone hurts him? It’s not unheard of. Will Jude even be able to go out independently on a shopping trip? In some ways I kind of hope not.
So I’ve been looking up articles about boundaries and teaching them to learning disabled children. I read one support guide that gives useful suggestions such as when teaching about personal space, encourage your child to hold their arms out aeroplane style and spin round whilst explaining that this is how much space people need.
A surprisingly useful link I found…and I have no idea how I ended up here in the first place, is the Supernally website (stop laughing) http://www.supernanny.co.uk/Advice/-/Health-and-Development/-/Special-Needs/Behaviour-and-Discipline-issues-for-children-with-Autistic-Spectrum-Disorders.aspx
On this page, she offers multiple coping mechanism, broken down into differing areas of behaviour.
Here are her suggestions for when out in public:
- Give your child headphones so they can shut out the confusing sounds around them.
- Prepare a timetable or map for the shopping trip with a shopping list to complete. For example, “At 4pm we will go shopping, and we are buying crisps and fruit” and so on. The map of the shopping aisles will help your child know what to expect, and once the shopping list is complete, this will indicate that the shopping trip is finished (don’t forget to add going to the checkout and going home to the timetable!).
- Give your child a task to complete during the trip, using visual symbols to guide them. For example, they could be in charge of buying the bananas and oranges.
I really like this list and am tempted to draw Jude a little timetable for the next time we’re out. He will find this fun and it could stop any possible meltdowns before they even occur. BUT there are flaws…I’m pretty sure I will NEVER have time to invent tasks for Jude to complete whilst we’re out. I just about have the organisational skills to put shoes on the baby and make sure I have my purse, three children and a buggy.
When talking about behaviour difficulties, the author states that “Traditional discipline will not work for a child with an ASD*. Children with an ASD are unable to understand the consequences of their actions, so punishment is likely to make behaviour worse and cause more distress for both parent and child.”
*ASD = Autism Spectrum Disorder
This is interesting and something I know deep down but have never fully appreciated. Jude doesn’t understand anything. Jude doesn’t understand why I get cross when he throws wrappers on the floor or leaves clothes all over his bedroom. He has a habit of stuffing things under his bed when he no longer wants them near him and doesn’t understand why I get mad when I find these items, normally they are week old pants or socks festering in a pile amongst his shoes and random bits of paper.
Does anyone have any interesting stories of teaching boundaries? I admit this is (another) thing I struggle with, the fact that Jude behaves so carefree and without limits. I know, when put this way, it could be construed as a good thing. Shouldn’t we all be boundless and free from concern of what others think? Yes and no. This is another discussion entirely but I’d love to hear any stories, advice or comments about boundaries and special needs children that you may have.