Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

ASD child? Are you getting what you’re entitled to?

If you are the parent of a child with an Autistic Spectrum Disorder, you don’t need me to tell you how difficult a ‘normal’ lifestyle can be.

Not only will your child have some level of social and communication difficulties, they may well also need speech and language therapy or regular occupational therapy that unless you pay for privately, you face a long NHS wait (in the UK) or it may not be available at all. Going for days out maybe out of the question because of long queues or simply the stress of facing the world and other people maybe too much.

You may even need to get hold of specialist equipment such as writing slopes, special types of pen or even a laptop that would make your child’s life so much easier but it all costs money.

If your child has a disability that affects their life so that they need more help than an average child of their age, you may be able to claim Disability Living Allowance. It is made up of two components, The Care component and the Mobility component. You can call the DWP for a form, or you can now apply for it online. It’s a tricky form to fill out, because it’s not really set out for children with ASD, but there is advice on the NAS website on how to go about it.

If you are refused, you can call up and ask for a reconsideration of the case if you think what you have said has been misinterpreted, or, failing that, you can appeal. We get the middle rate of care and the lower mobility rate for both our Asperger’s sons, and it’s worth more than £250 a month each. This helps towards the costs of specialist education, which includes OT and SLT that we would otherwise find difficult to afford.

Legoland, thanks to their disability scheme

Legoland, thanks to their disability scheme

If your child has a Statement of Special Educational Needs they may be able to get a laptop or other IT equipment from the LEA. Ask your school to arrange an IT assessment. My younger son has an LEA laptop that he makes really good use of.

If your child qualifies for DLA and you are their main carer, and you don’t earn over £90 a week, you can claim Carer’s Allowance, which is worth around £53 a week. Not a lot, but if their condition prevents you from earning money through working, (eg, you can’t leave them with childminders after school or in holidays because of their condition)  then you also can’t claim job-seeker’s allowance, so every little helps.

If your child gets DLA, you are also eligible for a cinema card. This means that one person/carer accompanying your child to the cinema can get in free. It costs £5.50 and is valid for a year. You get a photocard with the child’s details so it doesn’t have to be the same person taking them each time.

Many children with ASD love going to theme parks, but cannot stand to queue which means that they rarely get to go. However, many theme parks have special passes or stamps which mean you can use the exit as an entrance, thus avoiding the queue altogether. We did this and got around Legoland’s rides so quickly, we were able to leave by 2pm having been on everything and with barely any stress. Other attractions also have reduced rates for the disabled or free entry for carers. Check their websites or call them up before you go.

The above are in addition to the usual child and work related tax credits which are availabe to anyone who qualifies. More information on what you may be able to claim can be found at the Disability Alliance website



SNM Holiday 3: Incident on the beach

So, we were well into the holiday, we’d done Goonhilly Earth Station where Asperger’s Son2 had had a tantrum because he wasn’t heavy enough to go on the Segway Tour and then Asperger’s Son1 had a tantrum because we said if one couldn’t go then no one would (to avoid unbearable crowing afterwards). We’d done the Eden Project where despite all the amazing things to see in the biomes, the restaurant and the shop were still the most popular attractions.

So it was Thursday, it must be Tintagel. I was particularly looking forward to going up to the castle as the last time we were there we’d gone the wrong way and had to climb down a steep grassy embankment to get to the castle by which time my legs were too wobbly to go up it. This time, we knew better. The five of us, including Grandma, went down the equally steep hill to the castle but at the pay station, Son1 decided he wasn’t going up the rocky outcrop path to the castle in case he fell off and tumbled down the cliff into the sea. Now, this is a  perfectly safe English Heritage property, not for the faint-hearted, granted, as it is a bit of a climb, but safe nontheless. But he was adamant. He was not going and he was more than a little worried about his Dad going as well in case he came careening off the edgeinto oblivion and then he’d just be left with me, No-Fun Mum.

His fears were both irrational and not, as he is rather accident prone and if anyone could fall down a perfectly safe path and crash on to rocks at the bottom, it would be him. But once he had firmly refused to go up, Son2 decided he wasn’t going up either, so my husband and mother-in-law went up by themselves, leaving me to sit at the cafe and watch their progress, while the boys drank hot chocolate. One day I will get up there. One day, before I am too old to manage it.

After lunch, and further fortified by Granny Wobbly’s Handmade Crumbly Fudge (not to be missed at Tintagel), we set off in search of a beach further down the coast. The tide was on its way out and there were surfers braving the early April weather to catch a wave or two. The boys made do with rock-pool hopping and exploring and were having a great time, which meant we were too.

What happened next?

What happened next?

Son1 then starts jumping from side to side of a stream leading to the sea, bordered by boulders, some covered in slimy seaweed. Please stop that, I asked. Please stop that Grandma asked. No, we were told, it’s fun. You can guess what happened next, can’t you?

Hey, who left that slippery seaweed under Son1’s feet? A mighty splash and he lands, fully clothed, in the water. In April. Of course, it wasn’t his fault. Of course not. It was the seaweed. It was the rock. It was our fault for not buying him some shorts at the surf shop that he had wanted.

So, he got his shorts and a T-shirt as well. The nice lady, a mother of six herself, had seen it all before and put his wet things in a carrier. Son1 is now the proud owner of a  very cool Trebarwith Strand Surf Shop T-shirt and is none the worse for wear and I am just glad the lodge we stayed in had a washer/dryer.

I just imagine how boring our lives would be without our own home-grown Comedy Central players. Most people look at us parents of Special Needs children and think how sad we must be. But it’s laugh or cry. I know which I would rather do. And just think of the stories we’ll have to tell their children.

HolidayPost Number Two here

SNM – Holiday 2 – The Zoo

We booked a day as a zoo-keeper at Newquay zoo for the boys. This was an unparalleled success! The day involved being taken around the zoo with a zoo-keeper, togged up in a special ‘junior zoo-keeper’  T-shirt, feeding the otters and the penguins and generally get a behind-the-scenes look at the life of a zoo keeper.

Boys Feeding The Otters

Boys Feeding The Otters

Every time we’ve been to the zoo in the past, it has been a race around the enclosures to see who could get to the shop first. We routinely spend more time in the shop than actually looking at wherever it is we’ve gone for the day. But this time – magic! Mark, our guide for the day, led the boys around, helped them prepare stuffed rubber ‘kongs’ for the monkeys, complete with mealy worms that Son1 refused to have anything to do with and explained all about the animals we saw along the way. The boys were fascinated and never lost focus; a miracle!

He showed them poison frogs being bred in a back-room, baby lemurs, talked to them about the red pandas and helped them to feed the Asian otters and, the boys’ favourites, the Humbolt penguins. They learned so much in a morning and were happy to chat away to Mark, even though they don’t generally do strangers.

At the end, Mark told me that he was always amazed at the number of zoology students who had Asperger’s – they had, he said, the equivalent of ‘green fingers’ with animals. Son1 is now determined to study zoology and has decided not to mess around in Science anymore. I’m sure his teacher will be most relieved.

Holiday 3: Here

Holiday 1 Here

Special Needs Mum.. on holiday 1

It’s that time again.. the long (3 weeks in our case) Easter break. We took advantage last week of finishing a week earlier than state schools by heading down to Cornwall to stay in a beautiful lodge at a country club, before the price went up.

The boys refused to travel without extra pillows, soft toys, blankies, laptops etc, which made our car full to bursting point, but, once wedged in, off we set. We arrived a mere four hours later with only one incident during lunch at McDonalds when Son2 peeled off all the monopoly stickers while Son1 was in the toilets causing trembly lips and watery eyes and a promise to visit McDonalds again during the week (something to look forward to).

On arrival, the children were delighted to find the lodge had a jacuzzi bath and that was their evening entertainment set. Instructed to only use enough bubble bath to wash themselves with, I left them to it while I went to unpack. I know, I know, although they are 9 & 11, they do have Asperger’s and perhaps I should have sat with them, but they were just across the hallway and I could hear them twittering and giggling away. Some time later I also heard a retching sound and dashed in to find Son1 standing, covered in so much froth he looked like bubble man with a bubble top hat, arms outstretched and wailing that he had swallowed some bubbles and thrown up. In the jacuzzi. OMG! How long had we been there?! They had totally ignored instructions and tipped half a bottle full of bubble bath into the already foaming jets. Once Son1 was hosed off in the shower, hubby and I then had the task of cleaning vomit out of the bath (thankfully the jets had been off).  Happy Holidays! More follows here.