I liked it how it was…

Would it be fair to say none of us like change?

I’m sure there must have been a time, an age, when I relished it, but now… now I like to know where my towel is.

There has been too much change of late. And I don’t like it. Over the past two months we have been buffeted by it from all angles and, to continue the metaphor, we are all at sea.

There has been a perfect storm of Alex starting school coupled with the loss of our respite added to a greater need for childcare.

When any child starts school there is a huge change in your life. I know this because we had Emma, so I know that half days are frustrating, there’s no way you can work that half term without considerable support and that they get tired and hysterical. Also, that school holidays are a nightmare for working parents. I get that. I am there. I am that muggle parent of one mainstream and one SN child.

It is – you’ll be unsurprised to hear – different with Alex. Whereas with Emma, there were solutions: playdates with friends to keep them occupied, childcare over the holidays can be provided by clubs/ playschemes and I’m-so-grateful-to-them grandparents and, worst case,could you just watch television for half an hour whilst Mummy writes this e-mail/ hangs out the washing/ attempts to cook some food? None of this applies to Alex. He doesn’t watch TV, we can’t do reciprocal playdates (even if he were invited I would have to go too) and noone, but noone, can look after him except for a trainer carer. Or us. Trained carers who want to do after school hours only? Are currently thin on the ground.

And then we lost our respite.
‘I’m sorry, we’ve had to terminate this placement as he’s no longer safe’.
Alex, little monkey that he is – little clever developing monkey that he is – has worked out that if he pulls up on something, he can go over that something. Great for development, not so great for the bed with 60cm sides at his respite carer’s house. That assessment for other options, a solution… came up with no option, no solution. And so there we were. Just hanging.

We are currently going through the mother of all assessments to get some different care in place. It’s hard sometimes for me to feel that I’ve expressed clearly enough to you all why we need this. It’s not a luxury. It’s a necessity. Without it… not great things. Alex is a lovely, delightful little boy and we want him in our lives, but he takes up so much headspace in terms of his right now needs and his next hour/ next day/ next week needs… that without a break from that. Just to stop. To exhale.

We all need a break from our children I think. And I think it makes us better people. We are not just parents we are also ‘who we were before they came along’ and I don’t think that’s something we should feel guilty about. It’s just that usually there are a lot of care options. We’re a bit more limited. And not knowing that window is there is a little suffocating.

So we have been invaded by social workers and social worker assistants, we have had phone calls with line managers all of whom have been understanding and are trying for us and… and, frankly, we are tired. Dealing with Alex related admin is, as any parent of a special needs child will tell you, a full time job – without holidays, or sick leave :-) Usually it is manageable but currently it feels relentless. And whilst I understand the process will hopefully give us the outcome we need… It is invasive. Family units are naturally private I think. Our doors? Wide opened.

And then. There is sleeping. Alex not only busted out of his respite carer’s bed but also the bed with the wonderful blow up sides that we had borrowed. So he is currently on a mattress on his floor with a sofa rammed up against the mattress on one side as that will keep him safe. But it’s not pretty. And not how I pictured my school-aged son’s bedroom. And not the easiest to pick our solid 20kg boy up from either.

We are viewing beds that will work for him. They are essentially giant cage cots. But it will keep him safe and we will sleep. Or sleep more than we do at the moment. And if we’re lucky this bed will arrive this side of Christmas.

I’m conscious this is a great big moany post. And I’m hoping you’ll allow me that indulgence. Chatting with a friend today we agreed there was nothing better than a good whinge. Just to get it out there. Normally – and probably tomorrow – we’re in a pretty positive place. Today, just for a moment, I needed to share the other side.

2014-10-26 15.08.41-1
Mummy, now that you’ve had a great fat whine, would you like some cake? That solves everything. Apart from wine. Definitely wine.

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2 Responses to I liked it how it was…

  1. Claire Schneider says:

    I love your whinge, your moan & above all your honesty.
    It’s vital to blow off the steam, and escape.
    I truly hope that the system doesn’t fail you & some respite for you all is near.
    I wish I could offer more, my door is always open for coffee , chat, bitch & moan. Plus I make a good cake.
    Big hugs Helen, your a trooper x
    By the way, it’s Claire, Isaac & Lily’s mum! X

  2. swanarchie07 says:

    Fantastically written and couldn’t of said it better. Just what happened to us and its crazy. Sending massive hugs

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