A Night At the Theatre

Last night I too the girls to see a live performance of Jaqueline Wilson's Hetty Feather.
We've been to live shows before and the girls have loved it. So far we've seen The Gruffalo's Child, Room on the Broom, What the Ladybird Heard and Andy and Mike's Tick Tock Time Machine. Lucy has coped really well, she doesn't mind being around lots of people, she doesn't mind loud noises for a limited amount of time, she enjoys the shows and interacts well. The only time I have had problems with her it wasn't a live show but a 4D movie...which included smells..that's her weak point, she doesn't like strong smells.

So we went along to watch Hetty Feather just like a normal family. I was a little worried because we were going to the evening show which finished past the girls bedtime. Leila gets tired and Lucy doesn't like her bedtime routine changed. The show was also just over two hours long, which seemed a long time to expect Lucy to sit and watch. She can watch a whole movie, but just about and most movies are only about an hour and a half. The extra forty five minutes of this show were going to make a difference.

Well, she didn't do too badly. She really enjoyed the show and was completely attentive from beginning to end.

She breaks the mould of what people expect from autistic children when it comes to empathy because she cried at all the sad parts. Well, I say cried, she sobbed, I had to sit hugging her as she cried her little heart out, I had to keep reassuring her that it would be a happy ending. It was a happy ending, and she cried at that too. I have seen her cry at things before, but it's usually involved animals. She did cry with happiness at one of the High School Musical films the first time she watched it. So, I'd say she was empathetic, very much so. Even if she has little control over how she expresses herself, at least she is expressing the correct emotions at the right times.

When the show stopped for the interval she knew it was past bedtime and insisted that we went home right then. I told her that it would be a shame to miss the second half and we wouldn't know what happened. She didn't seem to care. So I told her that if we went home right then, we would still be late for bed, so why not watch the rest of the show anyway. She wasn't happy with that but did see my point.
Finally, I persuaded her to stay if I bought her an ice-cream. This made her happy. Just like a normal child.

As soon as the second half started she was totally engrossed again.

They were both really tired but completely fired up when the show finished. As I said before, it had been a happy ending and Lucy had cried, probably a little too much, but she said she was really happy. Then we got up to leave and before we had left the auditorium she started talking about Pokemon. It was like we had not been to see the show, she didn't want to speak about it. All the way home she talked non-stop about Pokemon, Mario and Sonic the Hedgehog. So much so that my head spinned. Leila was trying to talk about the show and what she had enjoyed, but she wouldn't listen and didn't want to take part in the conversation. In fact, even when I spoke to Leila, Lucy just carried on talking about Pokemon et al. On the way home Leila sat with my niece who had come with us and ended up falling asleep on her after they had chatted about their favourite bits of the show. Normal.
Lucy talked all the way home, not mentioning the show at all. It was as if she couldn't think about it because it had affected her so much, so she talked about her favourite things instead. Not so normal.

At home we still had to go throught the normal bedtime routines even though we were nearly three hours late for bed. Eventually, she stopped talking about Pokemon, Mario and Sonic and went to sleep.

Today she has talked about the show, she remembers it all and told us her favourite bits. One part was when Hetty gets a spanking. We don't do physical punishment in this house so you'd think she'd be shocked, but the scene was performed comically and the very last spank was performed in really slow motion, which was quite funny to see being done live. This scene has been re-enacted by Lucy over and over and over and probably will be for days. (When I say re-enacted, there is no spanking involved, she just copies the faces and movements of the actors and they were when the last spank was performed.)

To us, she is normal, quirky maybe, but she's our girl and she's always been the same. The routines, the repetiveness, the randomness of her conversation topics, the incessent talking about what she wants to talk about even when no-one is listening to her, the lack of control over her emotions, to us, all normal, all Lucy.

She managed to sit through a two hour plus show and pay attention the whole time, she showed emotion at the right times, she stayed up past bedtime (although, not completely without complaint) and she enjoyed the evening. All normal, all typical for a child of her age.

People have pre-conceptions about autism, they often think that children can't sit still, always mis-behave, can't control themselves and so on. In fact, on the outside, a lot of autistic children can look just like other children, and behave just like other children. No-one on the bus home would have thought of Lucy as strange just because she was talking about Pokemon, they didn't know she'd be talking about them incessently for at least an hour, they didn't know that we'd just been to see a fantastic show and any other child would be wanting to talk about that, they didn't know that a lot of what she was saying would be repeated over and over and over. To them she was a normal, excited child on their way home to bed.

Limbo Land Again

We are still waiting to hear what will happen next with Lucy. I called the hospital last week and they promised that someone would call be back, when they hadn't called back 10 days later I called them again. I was told that Lucy was being transferred to a new consultant and that they would call me back and let me know what was happening. I still haven't heard anything.
I don't know exactly what they mean, she could transferred to a new neurosurgeon or maybe they mean a different type of consultant, an orthopeadic doctor, or rheumatologist??? I really don't know. Maybe they mean she's being transferred to another hospital? I wish I did know. It seems crazy that she can be in such a fragile state and the hospital just don't seem to care. Or maybe they just don't know how to help her? Either way, it seems too much trouble for them to let me know what is going on.

On the bright side we have put it all aside this week and had some lovely days. We had a day out at the Nature Reserve which was lovely. The weather was fantastic and Lucy was feeling well. She managed to do a fair bit of walking as well. She couldn't join her siblings in the soft play area, it was too risky, and the playground was full so we couldn't risk her playing there either. It was hard saying no but she was gracious about it, especially when we promised her a treat in the shop before we left.

We had another day out in town where the girls had the opportunity to review some great new trainers which you can draw on. After the event we had a walk around town and again I had to say no when she wanted to play in the play tunnel and slide in The Entertainer. I really hate having to say no all the time.

So we went out twice safely, but then she has a fall in our own back garden. Thankfully, she didn't hurt her neck but she hurt her leg. She had a big scratch and a bruise on the top of her thigh. I was worried for a while because she said her leg hurt too much to move and I thought she'd done some serious damage. It did ease off though and she was able to walk ok the next day.

Another worry is her headaches. She's been getting them for a while, before her neck twisted. I took her to the GP who said she was having migraines and to just give her pain relief. I don't think they are bad enough to be migraines, I get them and they actually floor me, her headaches are not so bad but they are frequent.

I find myself constantly checking her pin wounds from the halo. They improved quickly after the removal but they don't seem to be getting any better. They are more like deep indents than wounds but they are still red and still noticeable. I wonder if they will put the pins in the same place when/if she has another halo put on. Or will she have new scars?

So here we reside in limbo land again. Trying to get on with our lives but constantly worrying about our little girl.

Living With a Halo - part two

Another post taken from my other blog about how we are getting on with the halo.

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My Lucy is a real trouper. She is coping so well and I'm so proud of her. We had a hospital appointment yesterday where she went to have all her screws tightened up. They also gave her an x-ray and things are still looking good. Her Daddy got to see the scan pictures all in order from the start and was a bit shocked at how bad it actually became before they did the manipulation. Thankfully things are looking much better now. It's still not perfect because the consultant over compensated, but he insists that it will go back once the halo is off.

Sleeping has become easier for Lucy. It's probably down to just getting used to the halo more than anything else. She only has pain relief when she asks for it, which is usually last thing at night and first thing in the morning. She has really adapted to wearing the halo and never lets me forget to clean her pin points regularly.

We have found a way of washing her hair.
First I put towels around the edge of her sheepskin. Then I cover her with a black plastic bag. Then I use a plastic hair dressing cape across her shoulder bars.
I put the Little Man's step in the bath for her to sit on. Then I wash her hair trying to use as little water as possible.
It's not easy but it gets the job done and so far we've not got the sheepskin wet.

Clothes are still a problem but we've found that spaghetti strap vests that are a couple of sizes too big will go up from the bottom and stay on her shoulders. They manage to keep her tummy and side bits covered up.
Then we can put button through cardi's or blouses over the top. Luckily there is not problem with her wearing her normal jeans and trousers. I did buy her some dungarees but she's not keen on them.

We took her to her school for the Christmas concert and they all made a fuss of her. We even had seats reserved for us at the front. We may consider sending her back to school after Christmas for a couple of mornings a week.

Living With a Halo - part one

This is a post copied from my other blog which I've decided to include as it explains how we have coped with the halo.
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One week on from Lucy's operation and we are learning how to cope with the halo. Just over a week ago I was thinking of how I would cope with Lucy's long hair if she had the halo fitted (it wasn't definite then) but now I see that really was the least of our problems.

 Starting with the hair though, it really isn't too bad. The halo doesn't go all the way around the head, there is a gap at the back, perfect for reaching the hair and putting it in a plait or pony tail. We do have screws in the side of her skull which means hair brushing is difficult, but it's not so impossible to keep it tidy. Also, I've been told that it may be possible to wash her hair next week when the pin point wounds have healed more. We just have to find a way of doing it without getting the vest wet.

 Now, our biggest problem is clothing. I didn't realise just how big the vest is, both at the front and the back. And the bars come right down onto the chest making putting clothes on almost impossible. So far we have managed to fit her in a cardigan which just covered her arms and fitted around her back. So I tried one of my bolero type cardis which has a fastening at the front. It just about does up at the front but tends to slip off her shoulders. The other day I took an old vest top apart and sewed on some ribbons to see if I could adjust it to fit around the vest. I had a little success, although the vest was way too small. I think with a larger vest it just might work but it's going to look weird. I've ordered her some dungarees, and praying that they fit. They seem the perfect solution as they open up at the shoulders. Also, they are adjustable at the sides so we could just leave them open if they don't fit over the vest. Fingers crossed they do the job.

Another huge problem is getting out, especially to hospital appointments. I currently don't have a car but I would so appreciate having one right now. We can't really take her on the bus, it just wouldn't be safe for her, I'd be scared of her bumping into one of the bars, or someone else. The ride can be quite jolty too, even if I ask the driver to stop while she sits down or gets off. I think she could cope with the stares, we're kind of used to that with her having to wear a collar for so long. However, the halo is unpleasant to look at and I wouldn't want to distress anyone on public transport. Taxi's are a good alternative but so expensive, and we don't exactly have a lot of money right now. I've tried to find some hospital non-emergency transport but so far had no luck. I'm managed to get two offers of lifts from friends and family, that leaves four journeys until the halo is removed. Also, I can't really take her anywhere else. We have been invited to see a play at the town hall at Christmas but I have no idea how to get her there.

Now, I'm quite used to not having much sleep. The Little Man has only been sleeping through the night for a short while, and Lucy has never been a good sleeper anyway. However, I'm finding looking after her during the night a big strain. She calls out to me often needing me to turn her over, or rub her knees (this is usually what keeps us awake) or give her painkillers, or just comfort her because she's distressed. This is happening all night long and I'm lucky to get an hour in-between. I do hope she settles more as she gets used to the halo, for both of our sakes.

Other things we've had to get used to are;
Cleaning the pin points. I found it quite hard at first, but now I don't think too much about it and just get it done. The ones at the back are the hardest because you can't see past her hair, but I'm so glad they didn't have to shave her.
Washing. We can't get the sheepskin under the vest wet, so no showers. She can have a shallow bath, but to be honest, I'd be terrified of her getting in and out, she's not the best at this without a halo. So it's wash downs. And we can clean under the sheepskin with baby wipes. I'm dreading what her skin will be like when it comes off.
Stairs. Lucy has always been a little awkward on the stairs and now it's ten times worse. Now she has to balance herself and has limited vision. I have to follow her every time she goes up, and come down in front of her just in case.

The halo is big and hard, I'm already sporting bruises on my arms and shoulders from it, and every time I go to kiss her it feels like I'm close to losing an eye. It's really not a kind or friendly contraption, hugs are out of the question. Also, when you collide with her, and believe me we are trying very hard not too, you worry about hurting her, although she hasn't complained yet.

On the plus side, and it's really hard to find a plus side, lucy has been brilliant. She hasn't complained much at all It has to be uncomfortable, and sometimes I watch her facial expressions and know she's in pain, but when I ask she says something like "it doesn't hurt too much, mummy" She's a proper trouper. I really hope this is all worth it and she comes out of it fixed and pain free.