Category Archives: Holidays

A ‘Fairly’ Successful Father’s Day

I had inadvertently arranged to visit the respite home on Father’s Day. Fortunately my husband didn’t mind at all and thought we might be able to work it in to a ‘day out’. All we needed was for the weather to improve…

The forecast seemed good and the day started sunny. Someone on Twitter posted that it was Open Farm Sunday and I thought we could build that into our day out, along with a bit of geocaching.

We started geocaching last year. It’s a great way of getting the kids out into the countryside and is a bit like a guided treasure hunt. You can download an app onto your smartphone and use it to find hidden caches all over the world. Even though our kids are older teenagers they still get excited about being the one to find the treasure (as do we)!

The visit to Humble Bee Farm was a great success. We spotted some birds of prey and Harry was immediately transported to the world of Harry Potter and his owl Hedwig! We listened to the guy chatting about the birds and letting visitors hold them. We had done this once before, quite a few years ago, but Harry had been quite nervous. This time he actually said he wanted to hold one…

Harry holding Merlin

We all took turns at holding Merlin, a male European Eagle Owl with massive talons and gorgeous clear orange-amber eyes like marbles. He weighed 3.5 lbs which soon starts to tell on an outstretched arm…

There was a farmer’s market where Dad tasted cheese and bought duck sausages; a hog roast where we shared pork, stuffing and apple sauce butties and the local microbrewery, Wold Top, was selling delicious beer which demanded sampling.

Harry’s obsession for picking up sticks had started almost as soon as we entered the farm though. We managed to persuade him to put them down long enuogh for him to have his photo taken in vintage and modern tractors and in a combine harvester.

Farmer Harry

We sampled local ice-cream from Mr Moo’s and were astonished that Harry chose rhubarb & ginger over vanilla. His handling of ice-creams can be a bit hit-and-miss (literally): he tends to lick them all from one side, ignoring the drips from the opposite side and then gets into a real mess. But he managed really well with some prompting from us.

After two hours it was time to head off back to where the car was parked at the top of a hill. Harry had started throwing sticks into the path of on-coming cars so Dad asked him to leave them at the entrance to the farm. This tactic works 50% of the time when Harry can be persuaded that the sticks should be left in a neat pile where they could be found again if necessary. Not today! Cue a rather public tantrum. Fortunately, Dad managed to steer Harry towards the car without too much fuss or name-calling (by Harry)!

It was at this stage we realised we hadn’t brought our wet wipes or antibacterial hand wash with us: standard kit when out & about with toddlers, but also with Harry because he picks up so much stuff off the ground. Should we go all the way back to the farm toilet block? Dad came up trumps again, improvising with bottled water & tissues!

Time for a couple of geocaches and then we were off to the respite home: a first visit for Harry and the rest of the family.

No need for trepidation though. It had been agreed that we would visit when the Manager (I’ll call her Sarah) was on duty. She had shown a particular interest in taking responsibility for Harry when he stayed and greeted us all by name at the door, even the dog! We had tea in the garden which Harry said was, “Just like at home”. A good start.

At first he wouldn’t look at Sarah whilst she gently asked him short questions about what he’d done today, about the school trip to Keswick, about his likes and dislikes. Harry referred all his answers to his Dad, only glancing out of the corner of his eye at Sarah occasionally.

Eventually she asked Harry if he would like to have a look around the home and he agreed to go off with her on his own. Another good sign. Ten minutes later they were back. Harry had picked out his bedroom: one with a view of the garden and the road. Sarah had taught him the door code to access the rooms upstairs and he had remembered it. Very impressive. I asked him whether he wanted to show his Dad and his sister the room and off they all trouped. Very, very impressive.

In all we spent about an hour and a half at the home but in truth I knew within fifteen minutes that Harry would settle there and feel at home. Sarah had even collected feathers on her way in to work, knowing that, along with sticks, Harry loves collecting them. She thought they might be able to do some craft work with them when he goes to stay.

Needless to say, by the time we left, she had won Harry over. And us.

A very successful Father’s Day as it turned out.

Applying for an Adult Passport When You Have a Learning Disability

Oh joy! Harry’s passport has expired. The passport he had held since the age of 13 will no longer do and he has to have his first adult passport.

I filled in the new passport details online at the Home Office’s Identity & Passport Service website. Within a few days the pre-printed form had arrived ready for Harry to sign and return. Ah… I spy a problem. Harry’s literacy skills are very limited. If pushed he can read basic C-V-C (Consonant-Vowel-Consanant) words like Mum, Dad, Cat, Dog, etc. But he can’t read a form. And he can’t sign his name. He can make an attempt at a signature which usually ends up looking something like ‘H-a-n-n-g’ but it isn’t consistent. And anyway, he shouldn’t be signing his name to a form he can’t read (a sticking point which I have had to argue with banks, building societies and even our GP surgery quite recently).

So I read through the accompanying ‘A guide to filling in your passport application form’ and on page 12 found the relevant note:

If you cannot sign the application form

If you have … a disabilty that means you … cannot sign the application form, you should call the Passport Adviceline on 0300 222 0000.

Which I duly did. After negotiating the automated menu options I eventually spoke to a young man who had to put me on hold whilst he conferred with his supervisor. It transpired that if someone has a learning disability then the person filling in the form on their behalf has to:

  • Enclose a letter stating that the applicant is unable to sign because s/he has a learning disability.
  • At Section 8 in the application form called ‘More Information’ state “See accompanying letter. Applicant has a learning disability.”
  • At Section 9, the ‘Declaration’, sign the form on behalf of the applicant, state your name and relationship to the applicant.

Thankfully relatively straightforward. Now to get new passport photographs taken – less straightforward since this will involve: firstly, a trip to the barber’s and secondly, a trip to the photo-booth.

Trips to the barber’s have become less traumatic over the years. There was a time when Harry couldn’t bear the noise of the scissors snip-snip-snipping around his ears, let alone the electric trimmers buzzing. He has obviously become less sensitive to these particular sounds.

Then there was the encounter with the barber who said Harry reminded her of the kid in ‘The Sixth Sense’, Hayley Joel Osment: “I see dead people…” Needless to say, we haven’t been back there since!

The new barber is great. I have to be there to tell her what Harry wants doing with his hair and to remind him to look at himself in the mirror and sit up straight. He is still slightly anxious about the experience: as soon as she’s finished, Harry leaps out of the chair and whips off the black protective gown whilst I pay.

A little more off the top, Sir?

Looking spruce it is time for the photographs. The barber has given us some useful information. A nearby electrical shop does passport photos. Not in a booth; they are taken by a man with a digital camera and I realise this will work much better for Harry. I had wondered how I was going to get him to look straight ahead and not smile. After years of begging Harry to smile for the camera, now I was going to be expressly telling him not to!

The man in the shop was very patient whilst I told Harry repeatedly not to smile and to “look at the man with the camera”. In the end I had to stand behind the photographer to encourage Harry to look straight ahead, not off to the side at me and his sister! But it worked. After three or four attempts we had a photograph that the Passport Office would accept.

And Harry will soon have his first 10-year passport, another step on the road to adulthood.

Don’t smile!

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?