So apart from the odd rant, usually about the school nurse, I think I paint a fairly good picture of our lives on Facebook and to the world in general. Well of the good stuff anyway. No one wants to know how many seizures Cam has had this week, how many shitty nappies we have changed this Bank Holiday weekend, how many times Alex & I snap at each other because Cam isn’t happy and we don’t know what else to do. Then go & have a cup of tea and carry on as normal.
Some people will know the above anyway, either cos they are close to us or because they ask, out of interest, concern or curiosity! It has always, well once I got my head round the situation we have found ourselves in, amazed me how different people are with our situation, us & especially Cameron.
After 16 years plus I have seen lots of reactions to Cameron whether it be kids in the supermarket staring or family visiting our house. Some choose to ignore the situation (& Cameron) others embrace it full on, without hesitation. The strange thing is when you expect a certain person to act one way and they shock the hell out of you by doing the opposite.
Sadly I have often thought that if anything was to happen to Cam, there are certain people who I would not want to be involved in the after math. They don’t care about him or us now so why would they want to be involved at a later date. I dislike the falseness of it all.
I mean, I know we can’t all be honest about every little thing, all the time. “You look awful” doesn’t go down well so we would generally ask “How are you?” and hope the response will indicate if there is a problem we should delve into further etc without offending. And we might say to one friend something we feel about another mutual friend which is an observation we would not point out to them direct, because it’s just not polite or productive in most cases. Obviously some people struggle with social boundaries & etiquette so there are exceptions as with every rule.
And I know we all lead busy, busy lives, but surely with all the modern-day forms of communication, most of them instant, email, phones, texts, instant messaging, tweets, why do people seem to communicate less. Well less with their larger group of friends & family and more with a smaller group of close friends, to the point of telling them every single detail of their day, on a minute by minute basis.
Have I set my expectations too high? How much contact should one expect from brothers & sisters once you are all grown up and have families of your own? Does how close you were as youngsters affect later life? Or do outside influences take over? What about parents? When do they stop being your parents? Or taking an interest in you & your family unit? I can’t ever imagine not being involved with my kids but as I have two boys maybe I will have to take a back seat for very different reasons as Ollie & Cam get older and leave the nest?
Despite having Cameron, Alex & I have always tried to maintain that family closeness (it was one of the first things Alex noticed about my family) but one thing led to another and it became very hard work. All those gatherings at our house were great but the next morning we found ourselves clearing up after everyone & looking after Cam. While everyone else enjoyed their day, especially at Christmas time.
People see us as independent and maybe even a little bit stubborn. I don’t think they realise we have had to be independent – if you have no help there’s only you two to deal with the situation. And while this has possibly been partly responsible for making Alex & I stronger it would have been nice to see how things would have been with a support network. That phrase was first mentioned during a review with Cameron’s Social Worker (number 5 or 6 I think!). I literally did not know what he meant. When he expanded about family, our parents & siblings I found myself explaining reasons they could not possibly help us. That was when Cam was younger – no excuses needed now it’s bad enough finding reasons to cope for ourselves!
Is it just a matter of organisation skills? I mean if I can remember stuff, plan stuff, arrange family things and deal with all the other crap I deal with surely anyone can? Or is it that they are happier just to downsize to their own family unit plus a few other family members? Or do they just decide they don’t like you but are being too polite to say so?
I remember after one Christmas break a few years ago I went back to work and a long time friend and colleague asked me if I’d seen all the family over the Christmas/New Year break? We hadn’t been away & Cam had spent a few days in respite but the answer was no. We hadn’t seen anyone. My friend said “Oh, but if you had a crisis you could rely on them to be there for you.” I did not think, my reply was totally off the cuff, “How much more of a f**king crisis do I need to be having?”
Are others really just more content than us because they are not dealing with all this shit (literally) and so have no need to maintain contact with family & friends. Or do they still not know how to deal with our situation even at a distance.
For many years people used to tell me that perhaps people just didn’t know how to deal with Cam? By the time he was ten I used to answer “Well you know what they’ve had 10 years to get used to it & no one told us how to deal with this. All they have to do is say hello and it’s not like he’s gonna keep them in conversation is it! They can then move on.”
People may not know what to do or say about the whole Cameron scenario but for future reference and if anybody ever reads this and knows someone in a similar situation:
They don’t necessarily need a babysitter or help with their child. (We have had that covered for years now.)
But it is difficult getting anything done around the house while you have a special needs child around. Especially when it needs two of you for the caring role. If you have a trade maybe you could offer to help them with the garden or decorating?
Or sometimes it is as simple as popping round for a coffee or beer to break up the routine of caring. Or if they can get out separately maybe they can take a turn to go out and talk over a coffee or beer with someone who doesn’t want to know about all the boring stuff they deal with – we have our own networks for that (my special needs mum’s again – still no name for us!)
Underneath all the other stuff is still your brother, sister, son, daughter, cousin, niece, nephew, aunt, uncle, friend. They’ve just taken on an additional role that has been thrust upon them. They certainly didn’t ask for it and they can’t give it back.
Do what you can for them no matter how small it may seem especially if you know (and you do know if this is the case) that they would most definitely be there for you if the tables were turned or you were in a difficult situation yourself.
Pay it forward >>> What a fab film that was/is! Loved it 🙂 x
Julie
No offence is meant by any of the above comments to any individual living or dead. I’m not even sure it makes sense!
Julie Noted 