Half way point.

ASD Mummy with issues.

We have made it to the half way point of the school holidays.

We have to be thankful to have made it this far without too many major incidents.

The holidays are now beginning to take their toll on everyone, especially M whose behaviour is deteriorating rapidly.

The first week and a half were good, as we were away and therefore busy.     Neither boy had time to be too fractious with each other.    They had plenty of fresh air and exercise and that meant they were tired enough to sleep well.     A winning combination.

Then this last week, we have started the slippery slope of holiday boredom.       The weather taking a turn for the worst hasn’t been helpful as it has meant we have had to be doing things indoors, and on the whole that has meant in the house, as going out…

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Hammer Beads.

ASD Mummy with issues.

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I have to confess that until 2 weeks ago, I had never heard of hammer beads, but on a visit to IKEA, the boys saw them and told me about how some kids at school had been using them.    It sounded interesting.   We bought the tub of beads and the boards to do it on.    
Today we finally got around to opening it, and while extremely fiddley – especially for my fat fingers, it is really rewarding.
The boys worked really hard and were very patient despite them flipping off at every opportunity.     I was getting rather frustrated with them, so how they kept their cool is beyond me.      
They made banners of their names which went straight up to go on their beds.     The patterns are now on ribbons as necklaces, and the minions are waiting for magnets to be attached for going on the fridge.
We made loads…

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Sea Life Scarborough – A Grand Day Out

As some will know, we were off on our holidays recently at Haven Primrose Valley near Filey in Yorkshire (https://theworldofneil.wordpress.com/2013/07/16/haven-heaven/) and had a fantastic time. There’s plenty to occupy anyone onsite, but there’s also a wealth of activities in nearby Filey and Scarborough. One such activity is the Sea Life Sanctuary in Scarborough, and thanks to fantastic charity Merlin’s Magic Wand (Sea Life is owned by the Merlin group – http://www.merlinsmagicwand.org/) we were off!

The centre is at the north side of Scarborough, but can be easily reached by public transport. The excellent Filey Road or Seamer park and ride ( http://www.scarboroughparkandride.co.uk/) will take you to the beach front, and there’s an open topped bus that will take you to Peasholm Park where a small railway is located that can take you to Sea Life. Its not too long a walk either from there and there’s also a pay & display carpark on its doorstep, so basically, access is excellent despite its location.

There’s a wealth of education for kids and adults alike at the centre. There are regular talks and feeding sessions at the various displays where the excellent staff will go through the history of their animals, how they live, what they eat etc. The various tanks and habitats are laid out in a logical order to let you visit each in order until you’re familiar with where everything is so you can re-visit your favourites, and get to the feeding sessions on time.

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We’d been there before, and the boys knew their favourites that they had to see. Penguins and seals were top of the list for them. They’d built an affinity with penguins largely due to their love of the penguins in the movie series Madagascar. So it was a more-or-less bee-line for the penguins! But even then, there was plenty getting in the way to see! Matthew loves nature, and has given an appreciation of marine biology from the excellent Cbeebies series The Octonauts. From that, he loves to read about and see the real thing. All the exhibits at Sea Life fascinate him.

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Matthew and Daniel charge about, and you’d think they weren’t taking any of it in, but the truth is there is so much that grabs their attention that they want to see it all. Its really a bit of sensory overload for them both. There were the odd little outburst, but I think that was only as a result of their excitement. After seeing their beloved penguins, it was on to the seals. Unlike some aquariums, Sea Life don’t have performing seals. Their primary function is conservation. They rescue seals, bring them back to health in their “seal hospital”, bring them up to fitness in the seal tank before releasing them into the wild once more.

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Conservation, as I said, is at the heart of everything Sea Life does, and that take me to the high point of the visit for me. I love turtles (we’ve got four at home) and love to see the pride of Sea Life Scarborough, Antiope, the giant loggerhead sea turtle. Antiope lived in the Med before being struck in the head by a propeller. It left her permanently brain damaged, and because of a lack of facilities to treat her, it meant an eight hour road journey to get her the help she needed. Antiope is unable to recognise food, and when she does eat, it will be anything that’s at hand (or flipper.) When she starts, she doesn’t know when to stop. So, it was off to Sea Life for her where she lives the life of riley. She’s lovely and its beyond criminal how these creatures are treated.

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Of course, we had to buy a Save the Sea Turtles wristband at the boys’ insistence! But its worth it. The £1 per band go to funding the EarthSeaSky (http://www.earthseasky.org/) turtle rescue centre on Zakynthos, Greece. They carry out vital conservation and rescue work in the med, providing the treatment and help that Antiope couldn’t get.

I think seeing Antiope again made the visit for all of us, but that’s not to take anything away from the rest of the centre. The boys swallowed the educational experience whole. Matthew loved seeing the spider crabs, another favourite from the Octonauts, and Daniel was fascinated by the jellyfish.

When it came time to eat, it was off to the café in the centre. Despite it being a largely captive audience, it was reasonably priced, good quality food with a reasonably varied menu. The boys went straight for hot dogs of course, with lattice potatoes. At just over £20 for the four of us plus drinks, it was very good fare.

Finally, after we’d seen all the animals, visited Antiope several times, taken in the feeding sessions and the talks, it was time to leave via the shop after a 6-hour visit. We made our purchases to remind us of our visit, including a hand made turtle keyring for me to make another donation to the rescue centre in Greece. All in all, it was another great visit. If you’re near Scarborough, make it a must-see. The staff there are dedicated, informative and helpful, and Sea Life carry out vital conservation work. We can’t wait to see Antiope and friends again next year!

Hot Diggerty Dog.

ASD Mummy with issues.

Every since having children I havent been able to say hot-dog, without singing hot diggerty dog in my head.   For those who have not got recent pre-schoolers, Mickey Mouse and his Clubhouse friends sing the terrible song at the end of each episode.     It just gets into your head, and stays there ready to burst out with little prompting!    http://www.youtube.com/watch?v=8ONpu4Ete4w

Now, ask me what my favourite food is and I will say sausages.   I don’t like really meaty premium ones, just cheapy ones that are probably more rusk than meat.     I’ve always loved them, and I must say both boys have inherited my taste buds on this!    D of course will eat most things with little fuss.    If he says he doesn’t like something, then the truth of the matter is that he doesn’t like it.     M on the other hand is very suspicious of new foods.    He knows…

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DLA Review Stress Over – For Now

As many will know, we are in receipt of DLA for Matthew thanks to his autism spectrum disorder. He was awarded higher care, lower mobility in 2010, but for just 3 years. We got the form a few weeks ago to have his claim reviewed (https://theworldofneil.wordpress.com/2013/06/10/asd-boys-dla-claim-review-time/), and it has been a stressful time. Matthew’s DLA has made a difference in that Jane can be at home for him 24/7 if he needs it – which he often does. The prospect of losing it was a frightening one, even though we knew Matthew’s condition had worsened.

The review claim form and additional information sheets ran to over 7,000 words, included school reports, his IEP and a diagnosis report from a clinical psychologist. We’d laid bare the difficulties we face with Matthew during the day, and particularly at night where he can be a real handful. Even though with all that information and evidence there were still doubts over whether or not the claim would be renewed – considering the DWP’s recent track record of refusing seemingly legitimate claims.

We posted the form on 12th June. We then received a letter from the DWP on 20 June saying they’d received the form on 14 June (not bad, only a week to acknowledge!) – thanks to the vagaries of their mailing procedures and the post, we got the letter on 26 June. Big worry was that if they needed information from the school (we’d put in M’s reports for the last 3 years) they were running out of time, as Scottish schools broke up on 5 July. But, considering the turnaround for Daniel’s claim last year, it was on track. We then got a letter on 5 July to say they were dealing with the claim and that if they needed any more information, we’d be contacted. Cue some more stress! It was in the system! We went off on holiday ( https://theworldofneil.wordpress.com/2013/07/16/haven-heaven/) with the claim being unresolved. Still, I put it to the back of my mind – I wasn’t going to let the DWP affect our holiday!

Of course, there was a pile of mail when we got home on Monday evening. And there it was, a letter from the DWP. I tore it open, just wanting to put myself out of my misery. The letter was dated 2 July, so would have arrived the previous Monday. I quick scan on the first page told me the news I’d been waiting for. Matthew’s claim was being continued. He was still entitled to higher rate care & lower rate mobility, and it had been awarded for another 5 years from October 2013. It was a huge relief. It meant that the near future would be settled financially and that we could keep moving Matthew forward. Dealing with a disabled child is difficult, and it presents challenges that parents of neuro typical children may never consider. It has meant sacrifices for us but we’re now able to move forward.

For all their many faults, the DWP pushed the claim through quickly, although it was as a result of us being very thorough with the claim, providing them with all the information they needed. Claim is due for review in 2018, but that’s a long way away at the moment. Right now, we’re feeling positive again.