Thursday, 30 August 2012

She's a Daytripper!

one way ticket yeah! It took me soooo long to find out....
Sorry, got a bit carried away there, that's what happens when you go sight seeing in Liverpool.
Daddy of babies 3,4 and 5 is a big Beatles fan...pah! At least I was born when they were around ;-)
So when deciding where to go on a day trip (which didn't involve a beach as we fancied something different) we chose Liverpool. I've only been to Liverpool once before and that was February of this year, but I was taking eldest son to the airport, and I really only saw the airport and the train station.

We arrived just after 11 am and headed straight for Albert Docks. On arrival, Leila read the sign as Albert Ducks and gave us a giggle. We had fun watching the Yellow Duck Marine plunge into the water and all it's passengers squeeling. We wanted to ride but it wasn't advisable for younger children, and I didn't want to stay behind with Joseph, so that's something we'll try next time. We also had a peek at the Yellow Submarine (which was not actually a submarine but a boat.) We visited the Beatles Story and bought a couple of souvenirs before taking a walk around the docks.

We walked into the town centre and had lunch at a place of the kids choosing...Mc Donalds!  Then we found a mini fair and the girls had a ride on the Helterskelter and then a turn at Hook-A-Duck. 
After we headed of to the Cavern quarter. We had a walk around and then headed down into the Cavern. It was dark, hot and smelly (beer) and Lucy really couldn't handle it. I could see her heading for a meltdown so we left again quickly. As Daddy really really wanted to go there I told him to go back and I'd take the kids to do some shopping/browsing. Leila wanted to go back in too so he took her and she loved it. Meanwhile we had a walk around some more touristy shops while we waited.

WE finished our day by visiting the World Museum. We started at the top in Space and worked our way down through dinosaurs, ancient Egypt and Greece, Natural History and the Aquarium. 

Just before we caught the train home we found a water feature that people were running through so we had to have a turn.

We had a really fun day and the kids were so well behaved. We had very few problems with Lucy, apart from in the Cavern but we could fully understand that. She also had some knee pain from walking, and a couple of times she became upset but nothing too bad. They were even well behaved on the train journey there and back. Joseph was the only one who got bored, but hey, he's only two.
I'd definitely visit Liverpool again, there was so much to choose from to do, we didn't get around to much at all. 

Monday, 27 August 2012

Plea for old Mobile Phones

I've just joined a scheme in which you can exchange old mobile phones in return for an ipad. I believe that Lucy, my 7ry old daughter with autism, would benefit from having an ipad and some of the excellent apps that I've been reading about. I know she sometimes uses an ipad at school and her teacher has some special apps for her. She needs extra help with learning how to understand other people and communicating with them. She is verbal but doesn't understand social cues. Also, I believe that her education would be improved as she would put more effort into her work if she was doing it on an ipad. She definitely a gadget girl.
Unfortunately at this time buying an ipad for her is out of my budget, so I was happy to find this scheme run by Hearts and Minds. I would like to collect 175 phones for an ipad with the Grace app.
This is not going to be an easy task so I'm asking everyone everywhere to help if they can.
The phones do not have to be working but they do need to be less than 10 years old and have a battery. I do not need any sim cards.
I have entry forms for a competition where you could win your mortgage paid for a year which I will fill in for anyone kind enough to donate a phone.
I am willing to pay postage for mobiles sent to me. They don't need to be in boxes or have any special packaging (just bubble wrap and brown paper would do) and they can be posted second class, or as cheaply as possible.

So, can you help? Do you know anyone who might be able to help that you could pass this message on to? If you can I would love to hear from you at okesanne (at)

Thank you xx

Sunday, 26 August 2012

Lucy's 7th Birthday

I'm finding it so hard to believe that Lucy is now 7 years old. Where has the time gone?
Her birthday started in the usual way, Lucy woke up early and I came downstairs with her. Her present were waiting for her and she was able to open them herself without Leila and Joseph's interference as they were still sleeping. Leila was a little upset when she got up and Lucy had opened her presents, but she soon got over it. Lucy was much worse when it was Leila's birthday and got very jealous as she watched her open her presents.
One of my presents to Lucy was a Fur Real Puppy Dog. She had asked for this and it was her main present but to be honest she's not paid it much interest, She also had a swimming mermaid doll and couldn't wait to get in the bath to play with it. It's been abandoned since. I bought her some Playdough because she requested it and it has been the most played with, not only by Lucy but Leila and Joseph love it too. Gifts from other people included a scooter, an art kit, lots of clothing, a stone painting set, a cuddly rabbit and some smaller bits and pieces (make-up, pens, a little pony, an alien in an egg etc.)
We didn't really do anything on her birthday as it was a miserable wet day and we are having a couple of days out next week so I thought I'd save my money.
On Saturday we had a little party for her. I sent out sixteen invitations in the last week of school but only had four replies. We had some rejections from a few friends too so I knew that not many were going to turn up. Just before the party was about to start we had a massive thunderstorm and Lucy was crying because she thought no-one would come in the rain. Then right on time, three of her friends turned up. So with Lucy, Leila and Joseph we had a party for six. Despite the low number we still had fun, decorating ponies, playing pass-the-parcel, musical statues, musical bumps and hunt the apples for the ponies. Then Lucy put her Just Dance game on and they all danced along. Finally the sun had dried up the garden  little and they went out to play on the swings.
I think Lucy enjoyed herself although it was hard to tell. She didn't really speak much to her friends and is not very good at party games, but there were plenty of smiles from her.
So that's my little ones parties over for another year and if I'm honest, it's really worn me out this year. I might have to think of something different for the future.
Here are a few pictures, including the cake which I made myself. (see how here)

Friday, 24 August 2012

Apron Strings

Today my eldest has been talking about moving out. He's 24 years old and has Aspergers Syndrome.
He tells me that he feels like he's being left behind, he's too old to be living at home.
He asked me about his money, currently he's on DLA and Jobseekers Allowance. He's trying to figure out how he can afford to live by himself.
He has even made a list of all the things he will take in his bedroom and who gets what he leaves behind. He's quite a stash as he hoards things, but he's also very tidy and everything has it's place.
He said he can learn how to cook and do the washing. He already knows how to do housework (although he doesn't help out very often, his room is kept very clean.) Shopping, he says he can do online, then he can work out exactly how much he is spending and have it delivered. I can't remember the last time he went to a supermarket.
He has obviously been giving this a lot of thought and I don't know what to make of it. Part of me is saying, no way Jose, part of me is saying, it would do him good. I really don't think living alone would work, but maybe I could look into some kind of care in the community scheme? I don't think he is too old to be living at home and I'm happy to have him here. He's currently doing a part time course in accountancy, maybe he could find a job first. He has done voluntary work and work experience so I know if he found the right job it could be good for him. He just needs to be understood.
A lot of people with Aspergers have managed in life, some without ever being diagnosed. I know that one day I will have to let him go, but it's not going to be easy.
However, knowing  my son like I do it will probably be something he'll talk about and plan for a very long time. He won't be in a rush.
Why is parenting so hard?

Saturday, 18 August 2012

The Invisible Disability

I don't tell everyone that we meet that Lucy has autism. Many of her friends and their mum's at school are unaware. At the age of 7 (almost) we can get away with it. I tried to get away with it much longer with her older brother but things turned really bad when he was 12 years old I don't want to make the same mistake.
Lucy is verbal, intelligent and looks normal. Occasionally she will glaze over and become distant and it takes a while to get through to her but most people will take no notice. Sometimes she gets a little over excited and an a little flappy, not an unusual amount though and again, most people will take no notice. She is un-coordinated and clumsy, she has a strange gait when walking and running and sometimes performs strange actions. At 7 yrs this is starting to be a little more noticeable but we are still getting away with it.
Lucy talks out of turn, ignores people, repeats what you say, talks about what she wants to talk about and doesn't really interact, talks incessantly about the things that interest her, makes funny noises all of which you can get away with at 7.
When do we stop getting away with it? When does it become apparent that Lucy can't help these behaviours and is not just immature. Sadly, I don't think it will be much longer and we have to start thinking about how to deal with it, and make things easier for her.
Lucy's older brother didn't have any physical problems but Lucy also has Hypermobility Syndrome and weak core muscles. These contribute to the strange way she walks and talks but also affect simple climbing ability. This summer our visits to the park have involved Lucy's 5 yr old sister and 2 year old brother doing everything by themselves, while I have had to help Lucy with climbing things. One park in particular has a slide/climbing frame that you can only access by climbing up a ramp holding on to a rope. While the other children, big and small, were zooming up with ease, Lucy just couldn't manage it and I had to give her a shove. Then yesterday we were at an event with face painting and the children were sitting on high stools to have their faces done. Lucy could not climb on to the chair and the lady who was about to paint her seemed totally shocked. I helped her up and went back to help her down afterwards.
So, although Lucy may not have the traits of a severely autistic child, and doesn't look obviously disabled, she does draw attention to herself.
Do we carry on as though this is all normal? My son suffered terrible bullying and even now I worry if he goes out alone (which he doesn't do very often.) How am I going to make things different for Lucy?

Saturday, 11 August 2012

Baby Number 5 turned two

My little man had his second birthday. It has all gone by so fast.
He was so excited when he got up in the morning and saw all his presents. His big sisters helped him open them and he was thrilled with everything. I bought him a 'work bench' which has a hammer, drill, saw and screwdriver and makes loads of noise. He also had a Thomas The Tank Engine with Harold the helicopter which he loved.
We didn't have a party for him, I did feel a little bad about that but with Lucy and Leila's parties just weeks apart it's always going to be difficult fitting one in for Joseph too. I'm not sure what I will do in the future. I did think it would be nice to get together with his little friend for a tea party or picnic but his friend is on holiday :-(
Still, he had a lovely day and was spoiled all day. I made him a fire truck cake and his face when we lit the candle and all sang Happy Birthday was an absolute picture. He even clapped his hands in delight and joined in with hip hip hoorays.
I still can't believe he is two already.

Sunday, 5 August 2012

Lucy's joints

Lucy has had problems with her legs for as long as I can remember. Even as a baby the only way we could calm her sometimes was by massaging her legs, or moving them in a bicycle motion. We thought it was to ease colic, no I think maybe it was leg pain all along. I took her to the GP several times and eventually she was sent to hospital for an x-ray. Nothing showed up but they did say she was hypermobile or double jointed. It was suggested she may have juvenile arthritis but on mentioning this to the GP I was told I would just be following up an unnecessary diagnosis as there wouldn't be anything they could do for her. Dismayed by the GP I went home, got Lucy a bottle of calpol and a couple of wheat bags. This helped for a while.
When Lucy was referred to a psychologist for a diagnosis into her autism she was sent for a physiotherapy check. Here her hypermobility was picked up again and it was suggested that this was what was causing the pain in her legs. So she was given regular physiotherapy which took place at school so it didn't interrupt her school life so much. She was also referred to a podiatrist who prescribed inserts for her shoes. I have noticed a difference, but she still gets pain. Recently I bought her a new game for her Wii. She loves dancing, so I bought Just Dance3. She has really enjoyed playing/dancing and it's giving her loads of exercise. Just like mum she lacks rhythm but I am already seeing an improvement. Maybe learning to dance this way will give her more poise and stop her looking so clumsy all the time? 

Looking more into Hypermobility Syndrome I have realised that Lucy has inherited this from me. I have always known that I was double jointed, but never really associated it with the pain I get. From a very young age I can remember screaming with pain in my legs and my mum massaging me. She always said it was cramp or growing pains, she had no reason to think otherwise. I still get the pain now, and in my ankles and fingers. Some times it's not so bad, sometimes it's inscrutable, but it's something I've had for such a long time I just get on with it now. The only thing I can liken the pain to is the the cramp you get during pregnancy, the sort that has you jumping out of bed in the middle of the night and will only go away by massage or walking it off. Sometimes my fingers seize up dead straight, this is painful too and I look like someone with arthritis. I can remember my nan's fingers like this, to the point when she was very old that a couple of her fingers where 'stuck' like it. Was it arthritis or did she have hypermobility syndrome too?

I have also learnt recently that bruising easily, sensitive skin and drooping eyelids are all symptoms that can be associated with Hypermobility Syndrome, both Lucy and myself have these too. 

Thursday, 2 August 2012

A few of Our Favourite Things

I was just going to post about Joseph's shoe fetish, yep, he's only (almost) two and already obsessed with shoes. Then I decided to post about all three little ones current favourite things. Then maybe I'll review it in a year or so and see if anything has changed.

So first up, the Little Man Joe. As I've already said, he loves shoes, he has five pairs of his own, but he will also wear either of his sister's shoes, his daddy's shoes (phewy) or his mummy's shoes. He's really not fussy. I really must get some photo's of him in all his different footwear. They don't even have to match. His next most favourite thing is his Happyland Train set which I bought him for Christmas. He loved it then and he loves it now. When he was little he was able to sit inside the track and watch the train go around. He's a bit bigger now, but that means he can build the track up himself. The train goes everywhere with him (although not to bed because it is noisy.) You just have to put the driver in and off it goes, but it will work with anything so long as it fits inside, building blocks are a good size. He loves putting the train on the radiator and watching go along and fall off the other end, this is really noisy though and he often gets his train confiscated if he tries it too much. Finally, he has a love of batteries. From an early age he would grab a screwdriver from the kitchen drawer and attempt to open his toys to get the batteries out. We have had move the screwdrivers now because obviously you can't trust a 1 year old with them. Every toy he picks up he points to the bottom and says batteries, even if they don't use them, he knows what makes things work.

Next up is Lucy. I think having older siblings has had a big effect on her, she loves anything to do with gaming and her prized possessions are her Wii and her DS. She loves Mario, Sonic and Pokemon and has all sorts of soft toys, some hand downs from her siblings, some she has collected herself. She often pretends to be her favourite characters. Another favourite is her 'sleep' bear, Bonnie. This was a bear we bought for her when she was born from the Bear Factory and it's been by her side every night since. Bonnie has had several outfits, from cheerleader to princess, but usually ends up in just her bear skin. Bonnie is necessary to make sure that Lucy has lovely dreams, hence she calls her a 'sleep' bear and can't go to sleep without her.

Finally, Leila. She's quite fickle and her favourite things change regularly. She too has a 'sleep' bear though, hers is called Sweetie, although, unlike Lucy she can sleep without Sweetie. To get to sleep Leila has to have Tiger Rory  (Rory the Tiger from Haven Holiday Camp) which we bought her a couple of years ago. She's had new tigers with different outfits, but the original one is her favourite. Leila is currently a big Hello Kitty fan and her birthday was based around this, she received lots of Hello Kitty toys. I do think this is going to be a passing phase though, we'll see.