Category Archives: Respite

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.


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?