Tag Archives: holiday

A Taste of Things To Come

Last week Harry went on a residential school trip to the Lake District leaving us to ponder daily life without him.

The trip to the Keswick centre run by Calvert Trust promised all sorts of adventure. Harry took no interest in packing so we worked out roughly what the weather might be like and packed accordingly: suncream, T-shirts, waterproofs and wellies! We ensured that he had enough money in his wallet so that he could buy something from the tuckshop every evening if he wanted and we made sure that Harry knew exactly where his wallet was in his rucksack. In the event, he came home with exactly the same amount of money that he set off with.

Students left in the school minibus with holdalls, rucksacks and packed lunches. They even managed to take the suitcase of someone who wasn’t going. And, sitting alongside them, they had the Queen (well, a cardboard cut-out version of the Queen) since this was to be ‘The Diamond Jubilee Tour’.

They stopped to eat their packed lunches in glorious sunshine at Scotch Corner, arriving in Keswick at 3pm. Everyone unpacked and found where they were sleeping. Harry was in a room for 3 and slept on the top bunk. After tea everyone went for an evening walk up Latrigg and had a Jubilee celebration at the summit, unfurling flags and having their photograph taken with the Queen. Some (Harry included) decided to roll back down…

The following day’s activities included cycling, archery and horse-riding. Harry has never quite mastered riding a bike. We bought him a large trike when he was about 8 or 9 and he loved riding it round & round the house until he got too big for it. Cycling at the centre took the form of three-wheeled pedalled go-karts which suited Harry, although he kept stopping to pick up sticks along the way.

I have never seen Harry on a horse and he has always been wary of animals, even small ones. So it was lovely to hear an account of Harry’s exploits – that he enjoyed the experience and when his horse, Silas, spooked slightly after it trod on a twig, said, “Look, it’s disco-dancing!” (Now he’s home, we even have the photos to prove it).

Given Harry’s love of sticks and the part they play in his role-playing he must have loved the archery session. He’s a big fan of Legolas, the bow-wielding elf in the ‘The Lord of the Rings’ films and of the recent TV series of Robin Hood. However, he has poor muscle tone so he must have needed a lot of help to be able to draw back the bow properly. Again, we have seen the photos…

Finally, before tea, everyone went for a swim in the pool. Harry isn’t keen on swimming – indeed, he cannot swim – but he will engage in supported floating and playful splashing. After tea they went on a bus ride around the lakes, taking the Queen along for more photo opportunities.

On their third day the group took on hiking, rock-climbing and abseiling – well, rope swinging. The rope was promptly christened the ‘Swing of Doom’ and Harry took charge of operating the ropes for their coach driver’s turn saying, “Release, release… He’s flying like a bat!”

Similarly, the climbing-wall was named the ‘Wall of Wisdom’ or ‘Wall of Wobbliness’ depending on the level of confidence. Naturally, Harry pretended he was Spiderman. At the end students were asked to describe the session and Harry said, “It’s like a miracle!”

The last day was pouring with rain but everyone was kitted out in wet-weather gear anyway, ready for their day of sailing on Bassenthwaite Lake. Harry has been canoeing before but never really seemed to enjoy it. However, when he got home the following day he told me it had been his favourite activity. Another success! Certificates for completing the Outdoor Adventure Activities course were presented back at the centre by the Queen (of course).

Reading the comments and looking through the photos sent home with Harry made us all quite emotional. Harry and his fellow students had obviously had a ball! We, on the other hand, had found his absence quite odd: less work for my husband to do in the mornings assisting with Harry’s personal care; no dishwasher-emptier for me and no reason for me to be home at 4.30pm to meet school transport.

And, although Harry is quiet and there are times when we scarcely know he is in the house, it was so much quieter without him. A taste of things to come…


Visit to a Respite Care Home for Autistic Adults

Just typing those words seems wrong. A ‘care home’ makes me thinks of old people sitting around in mis-matched armchairs gazing blankly into space. I know that’s not what all care homes are like – I visited half a dozen not so long ago when looking for accommodation for an elderly great-aunt – but that is the image that is conjured up in my mind.

In reality, of course, the care home is not like that at all. Far from it. After a drive of 45 minutes on a bright, sunny day I found myself at a large, detached Edwardian villa on the outskirts of a seaside town. It had been adapted to provide accommodation for up to 7 young adults on the autistic spectrum.

My overall impression was of a light, spacious house which consisted of: a communal lounge containing comfy sofas and armchairs for watching TV; an adjoining dining area equipped with several small tables and chairs where guests (or – as they have to be referred to by council staff – ‘service users’) could take their meals; a sensory room; a computer room; a communal kitchen where guests are encouraged to make their own drinks and join in with the preparation of meals; a wetroom and 3 ground floor bedrooms suitable for use by those with mobility issues. Upstairs were a further 4 bedrooms all with their own washbasins; a separate shower room and a bathroom.

Outside the garden was large with lawned areas, a pond, a summerhouse, seating areas, mature trees and flowerbeds: perfect for Harry’s obsession with sticks! I could easily envisage him pottering around quite happily in the sunshine.

We spent a great deal of time discussing Harry’s individual likes and dislikes, routines and behaviour. It seemed to me that staff would endeavour to accommodate Harry’s interests wherever possible. Activities available included Wii, computer games, DVDs, jenga, jigsaws, board games and barbecues. The home is located within walking distance of several pubs and shops and Harry would be able to go to the cinema if he wished.

At several points during the discussion I found myself getting quite emotional as staff commented on how lovely Harry sounded and that they were looking forward to meeting him. They expressed surprise that we hadn’t accessed respite care for him before. As I explained how easy-going and laid back Harry was I found myself wondering the same thing.

Although there were seven rooms these were not all occupied all the time so the mix of people would change over the course of the fortnght. In August, when Harry would be staying, we discovered that he would know several of the other guests who had been recent leavers from his current school. It was good to know that he would see some familiar faces whilst ‘on holiday’.

In my research I had found that the weekly cost of a stay at the home in 2009 was £233 so when we finally discussed costs it was with some relief that I learned Harry’s funding package from Adult Services would easily cover his stay.

By the end of my visit 2 hours later my mind had been put at ease. We agreed on a series of familiarisation visits starting with a Sunday afternoon trip in a few weeks’ time. In short, I was so taken with the place I’d have happily booked myself in and you can’t say better than that!

Researching Respite Care for Autistic Adults

This is a big deal for us. We have never had proper respite care; by which I mean anything other than a family member looking after Harry in our absence.

But this year – for the first time ever – we are going on holiday without Harry. Last year’s annual holiday wasn’t exactly a disaster but it wasn’t much of a break either. And Harry is singularly unimpressed with the idea of holidays: he doesn’t like water so swimming is a no-no; he’s not happy in sunshine and he can’t read – well, what else do you do if you’re sitting around a pool or on the beach? What he wanted to do all week was sit in the hotel room watching films on the portable DVD player. And he can do that just about anywhere…

Now that our daughter is nearly fifteen we realise there won’t be many more occasions when she’ll want to holiday with us…. So, this year, Harry is having a week’s holiday away with the school and then later in the year the three of us are having a fortnight together in South Africa.

While we are away Harry needs somewhere to stay. He had his first Needs Assessment by social services last year and it meant that I also had a Carer’s Assessment (all in one home visit). At the end of the assessment I was asked if we’d ever had any respite care – we hadn’t – and would we like some?

That took some thinking about. Our methodology to date had been: we can cope. Harry’s behaviour is relatively easy to handle and we had rarely sought any help or intervention. But our parents are getting elderly and have health & mobility problems of their own and they won’t be around as backup forever.

So this week I am going to check out what respite care is on offer to see whether it will meet Harry’s needs. I’m not at all sure what to expect. I have checked out the care home’s inspection report which is excellent and sounds ideal: it has an accreditation from the National Autistic Society (NAS) and caters specifically for up to 7 young adults on the spectrum.

But two weeks is a long time and my stomach flips when I think about leaving him for so long. If I feel like this at the thought of a fortnight apart how will I feel if/when he goes off to residential college for up to six weeks at a time?