Okay now that's a tough one...where do I start?
I could just say Autism, but really that would tell you nothing!
So I'll try this...I have 6 kids, and when all of them (or at least the younger 5) are all talking to me...or at me...all at once it gets pretty overwhelming. That's what it's like inside the Bears head all the time.
Now when all of my kids are talking at me all at once, I yell pretty quickly, and guess what? It stops! (usually)
Now I'm not going to tell you that Bear doesn't yell, oh my goodness does he yell...and kick...and punch...and scream. The difference is that when he yells it doesn't stop...ever!
So how can we make it easier for him?
Routine, routine, routine!
Now routine doesn't miraculously make it all go away, but it does give him the ability to predict what's going to happen next which seems to lessen the noise in his head.
Some routines are more important than others. For example the morning and night routine. We can go on holidays or do something a little bit different during the day as long as we keep those vital routines up...and don't throw him off too often!
Now sometimes you can do something completely different with him and he will seem to cope, he might even have fun if it is something that grabs his interest but over the years it has become obvious...to us at least...that he doesn't actually cope at all. There is ALWAYS payback, and payback's a bitch!!! Sometimes it's worth it but sometimes it's just soooo not!
Now while I'm on this topic I just have to have a little rant! I just can't help myself :D
I was recently told that I shouldn't revolve my life around these routines, that he is not always going to be able to have what he wants so I shouldn't give into him. That he needs to learn to fit in with the world!
Now at the time I was pretty upset and just said something like "Yeah but when you haven't slept in 8 years and you are constantly running on empty you just do what is easiest" and burst into tears.
I'm fairy sure that if he was in a wheelchair no one would say..."Well, there's not always going to be a ramp so he should just learn to use the stairs"
People need to accept that he is different...and that he's not like he is because he is naughty or because he is manipulative...he's like he is because that's how he has to be to cope.
And it is very unlikely that he will EVER just fit into the world! Not easily at least.
And that is okay! (everyone else just needs to realise that)
What a great first post Erin. Particularly love the bit about payback. We've fallen for that time & time again. They're always one step ahead of us aren't they? :-)
ReplyDeleteLook forward to reading more of your posts.
I love Bear's photo.
ReplyDeleteI love your response to the person who told you Bear has to learn to fit in. Brilliant answer.
Thanks Jane...and Jane!
ReplyDeleteHow does that person know that it's not bears world that we need to fit with not vice versa!
ReplyDeleteWhat really got to me was the fact that it was someone who SHOULD have known better...someone who has known him for over 8 years and spent a fair bit of time with him in that time. My thoughts are that she doesn't like that it means we do things his way, rather than hers!
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