Monday, 26 May 2014

The lows

Fostering, like anything is full of lows as well as highs. It's easy to feel guilty when things aren't going so well because overall Peter's making such fantastic progress, but it's important to be realistic. We recently found out that our close friends and family have no idea what our life is like on a daily basis because whenever we speak about Peter we're so full of our love for him and pride in his achievements that they assume everything's fine and dandy at home.  We're still relatively new carers - we need to learn how to use our support network so that they can actually support us!

Peter is extremely full on from around 4am when he wakes, to 6.30pm when he goes to bed. His volume dial is always turned right up and both Esmeralda and I carry earplugs to wear to take the edge off when it gets unbearable. His attention span is very short, and he cannot be persuaded to engage in something if he hasn't chosen to do it himself as he has a meltdown. At the moment there's a big discrepancy developmentally between his brain which gets over-stimulated with very little, and his body which needs high activity levels to burn off energy. There are many things that are completely out of the question for us with Peter for now, such as going out for a meal, going to a playground with more than one entrance, anywhere with a pond, river or lake, going on an aeroplane, staying in a hotel, going to any organised group activity (where there are any expectations to stay in one area/room or follow even simple instructions), staying anywhere more than a couple of hours, having more than one or two visitors at a time. Visiting someone's house is hit and miss - with careful planning we might be able to stay an hour. We can't browse around shops, go to the supermarket, a museum, stately home. We go to church, but sit in a side room as he can't cope with sitting in the congregation. He doesn't play with other children or have friends, so we don't do play dates or birthday parties. We can't use a crèche or leave him with anyone. We can't go anywhere we might need to queue. We have to plan days in advance based on how we think he'll react, but he's very unpredictable so there's a fair chance that we'll have to turn around and drive home 20 mins after we get somewhere. Thankfully we haven't had to take him to the GP as he would have to be pinned down to be examined and it would be traumatic. We have to micro-manage his food as he can't tell us when he's hungry, thirsty or full, grabs any food he can see regardless of whether it's on someone else's table/plate, stuffs his mouth until he chokes and would eat until he was sick.

He needs constant supervision, has no concept of safety or rules, cannot be reasoned with and doesn't understand even simple explanations like "it's closed". He has no comprehension of good/bad behaviour or rewards so things like star charts would be pointless. Due to his size and level of understanding it takes both of us to keep him safe and organise the day, so whilst he's awake neither of us gets much of a break.

There are loads of things he enjoys and can do of course, and we have great fun together, but it takes a lot of energy to "manage" Peter's time and anxiety levels so that we have as many successful days as possible. Cutting Peter's school hours down was absolutely the right choice for him and we can see the benefits, but it's intense and we're all tired. This weekend tempers have been somewhat frayed, so today we veged at home and watched DVDs together.

We'll be speaking to his social worker this week about finally arranging the respite that we were promised before he moved in, but which seemed to fall off the list of priorities once he was placed. He's 5 - we're not going to send him away for the weekend, but we would appreciate Children's Services funding the odd Saturday at a special needs playscheme, or approving a qualified babysitter so that we could have a meal out after he's gone to bed. Eight months is a long time in any job with no time off.

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