Saturday, 19 April 2008

Locked in (again....)

Sometimes it feels like there's a disaster waiting to happen around every corner. I feel as though I spend my life leaping from one disaster to the next. I spent most of last night awake worrying about whether I was doing the right thing - my parents are visiting at the moment and we decided to take advantage of the Ikea birthday sale, and planned to leave the house at 6am leaving them to get James and Bea up and breakfasted. My parents have found the last couple of years really tough - like me, their hopes and dreams for James (and myself) have been shattered by his diagnosis and the difficulties we are facing. Luckily, James still has a very strong connection with them - his face lights up when they come to visit (they live over 300 miles away so can only come every couple of months) and he shows them so much affection when they're here. It is still tough for them, though, when they know that they can't play with him in the same way their friends play and interact with their grandchildren. He has no concept of excitement or anticipation, and little interest in toys or gifts, so they are usually stumped for ideas for how to engage with him over and above hugs and food (and sadly, he doesn't enjoy the "usual" childish treats that grandparents enjoy indulging their grandchildren with - ice cream and cake don't wash well with him). But they love him unconditionally which is more important than any number of toys or ice creams.

As David and I drove off, I went through my list of things I had prepared for my parents - clothes, nappies, food, activities and thought I had it all covered. I was a little nervous when queueing as I worked out how long we'd be out of the house. Luckily we had our order all prepared and I was able to bypass most of the queue. Once we had paid, I phoned home to check how things were going - my sixth sense must have been highly tuned as I usually leave my parents to it. Turns out that they'd only just managed to rescue James from his bedroom - he has finally worked out how to slide the lock that is inside his bedroom door and had locked himself in! I have been begging my husband to remove the lock for months now but neither of us thought James could actually reach it plus he has pretty poor motor planning and fine motor co-ordination so I didn't think he'd ever manage it. It took my dad coming up to talk to him to get him interested enough to slide the lock open - he wouldn't have understood anyone's instructions of how to slide the lock open again so it was the lure of his Dede that drove him enough to try to get out of his room. Somehow I guess we'll be spending the afternoon taking the lock off the door (and removing all the other sliding locks around the house), rather than assembling our wardobe!

Tuesday, 15 April 2008

What animal would you be?

We've had a rather busy few weeks, with plastering, painting, cupboard building, skirting board and picture rail fitting and general chaos. It's taken its toll on all of us, and something had to give, so for me it was my internet addiction. Perhaps not such a bad thing, as it's meant I've spent more time with my husband and less time staring at the computer screen!

My big "news" is that I am now unemployed - I had been on long term sick leave and childcare problems (plus my fragile state of mind) have made it impossible for me to go back to work, at least in the short term. This means I now have the joyful task of filling in my application for Carers Allowance, which once again brings home to me how much I do for James.

It's the second week of the school holidays and I'm frazzled - I usually complain that the nursery session isn't enough time for me to get anything done/spend time with Bea/have a cup of tea, but it's now that it's not there that I really miss it. Luckily James has had a few sessions at the special needs playscheme, so we weren't in the house while the carpenter was around this week. Last week I had a couple of days to spend with Bea and whilst I loved every minute of our 4 hours together it drove home the reality of how hard I find spending time with both children together. Whenever I take James somewhere new I find I'm constantly on edge as I'm not familiar with the layout, particularly the danger zones. He has absolutely no sense of danger and is like a 14 month old trapped in the body of a 5 year old. He still runs in front of swings (and has been knocked down several times) and is drawn to water and the exit gates. I have a vivid memory of having to hold a rather bemused Bea like a rugby ball (she was around 5 months old at the time) while I dashed to the gates of a local park where some "helpful" man had let James wander through (he'd actually held the gate open for him and let him pass - I was livid). This was pre-diagnosis but it's no better now. Because James couldn't let anyone know he was lost or give his name or any other details I can't let him out of my sight. I did buy some IdentiKids wristbands for him ages ago but he didn't like them on his wrist and chewed through them (and with all the chewing the ink ran so even if they'd stayed on the number wasn't legible!!!). Maybe I'll try them on his ankle next time.... So the thought of taking both children out on my own brings me out in a cold sweat - now that Bea is more active and testing the boundaries I find it impossible to keep both of them safe and occupied. Even at home I can't seem to get it right - if I sit down to do a planned activity with him she wants to join in (and can usually do it more easily than he can - it's both heartbreaking and heartwarming at the same time to see your 4 and a half year old being shown how to roll out play dough by his 22 month old sister....). As soon as Bea comes near him he loses interest and runs away or throws everything off the table or refuses to participate. If I am sitting down to try and do something with Bea, then he'll usually suss out that I'm preoccupied and find something inappropriate to get up to like chewing through loaves of bread still in their packet or pouring water all over the kitchen floor. A friend asked me how I spend my afternoons and we decided that the best way to describe it would be "damage limitation". I wish I had an extra pair of hands so I could keep them both entertained and safe. Which is why I think I'd be an octopus - I'd have enough arms to look after everyone AND I could give myself a pat on the back at the same time!