Tag Archives: autism

A Tribute To Bonnie

I wanted to write a post in celebration of Bonnie, our beautiful dog, who died on Monday.

We had always resisted the idea of having a dog, especially whilst we were both out at work all day. However, when I decided to cut back on work last year my daughter leapt on this as an excuse for getting the dog she had always longed for. When I did not immediately say no she realised I would cave in and within days we had researched the internet for dog breeders with labrador puppies for sale.

We chose to get a labrador because of their reputation for making excellent pets. Harry had always been very nervous around dogs of all shapes and sizes. But we hoped that if we had a puppy Harry could get used to it being around and growing gradually.

It worked. We got Bonnie at the end of the school holidays last year. At first Harry was very tentative around the small puppy who kept trying out her teeth on him. But gradually he got used to her. She had a habit of jumping up at him first thing in the morning & pulling at his dressing gown cord and he learned to tell her, “Get down, Bonnie!” in his best, firmest voice. He liked being the one to put her food bowl down for her & enjoyed playing tug-o-war with her ragger and throwing toys for her in the garden for her to fetch.

She was a beautiful, gentle, patient dog and my constant companion for the last 10 months. She treated Grace like another puppy and looked forward to her coming home from school because she knew that meant playtime. When Harry came home she knew that it was dinner-time and would come and lay her head on my knees, imploring me to feed her. And when Stephen came home from work that was her cue for mad barking and jumping up for more hugs & cuddles.

To wake up and find her dead in her bed on Monday morning was an awful shock. Harry asked “What’s Bonnie doing? Is she asleep?” and I had to tell him the news. He has experienced the deaths of pets and relatives and invariably responds in the same way: “That’s sad.” He doesn’t cry but is sensitive to our emotions and so I explained to him that we might all be sad for the next few days. That night, when he came home from school he asked, “Where’s Bonnie? Where’s her crate?” I couldn’t stand looking at her empty bed so we had collapsed her crate and put it in the garage. I had to explain to him all over again that Bonnie was dead, “Do you remember?” Yes.

He has been quieter than usual and is obviously coping with her loss in his own way, as we all are. The difference with Harry is that he can’t tell us what he is feeling. Superficially at least it appears that death touches Harry only very lightly. But we have no real way of knowing.

Bonnie had a profound impact on all our lives, so much so that we can’t imagine not having a dog around the house. RIP Bonnie.

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Draft Strategy for meeting the needs of Children and Young People with Autism in North Yorkshire

On Friday I attended a meeting entitled ‘Consultation on draft Strategy for meeting the needs of Children and Young People with Autism in North Yorkshire’.

It was the last of 13 such meetings organised by the Access & Inclusion office of North Yorkshire County Council conducted over a 12-week period. As such, it was billed as

an opportunity to let us know what changes and improvements you would like to see and also to tell us what is working well.

The results of the consultations are to be reported to the Executive Members for the Children and Young People’s Service (so called since 2006 when the Education and Children’s Social Care departments were amalgamated) in September this year.

We received notification of the consultation via a letter sent home from school with Harry. It was explained at the meeting that parents of all children with a Statement of SEN had been sent a letter but that those of children in mainstream school had not. In those cases, the SENCOs were given the responsibility of informing parents. However, it became clear at the meeting that news of the consultations had not filtered through to some parents of children in mainstream school and there was a feeling expressed that such children were ‘invisible’.

The meeting took place on a day when extreme weather conditions were forecast. There were deluges across Yorkshire and parts of Scarborough and Filey suffered flooding. Perhaps for this reason the consultation was poorly attended (or perhaps because it was the final meeting scheduled). There were only 5 parents along with 3 members of staff from Ryedale Special Families.

Andrew Terry, Assistant Director for Access & Inclusion set about explaining the draft strategy and how it would move things forward. He noted that, whilst there was a legal requirement for an autism strategy for adults, there was no such requirement for children and young people, a fact which shocked me.

I pointed out early on that the draft strategy referred to the age group of 0-19 and that, in the light of the government’s Green Paper, the strategy ought to mirror the new age range of 0-25. They acknowledged that there had not been time to alter this but that it would be changed by the time the strategy was finalised.

One of their priority actions is to work with the Voluntary Sector in increasing autism awareness  through TESS (there are an awful lot of acronyms bandied about in such documentation) – Training Education Short Breaks Service. And to widen training in autism for professionals within NYCC. Parents noted examples of teachers in mainstream school who seemed to have little if any understanding of autism. It was also apparent that in some cases there was little by way of support for the child in school via ASCOSS (Autism Spectrum Condition Outreach Support Service) and none at all for parents.

They intend to increase the provision of parental support programmes such as Cygnet, Ascend, EarlyBird and EarlyBird Plus. I noted that I had never heard of these programmes and they needed to be more widely publicised. The council intend to produce a pack of information for parents of newly-diagnosed children. Those present noted that support groups were not always the first port of call for parents in this situation and I wondered whether a web page or other use of social media might provide a useful means of support for parents who felt physically and psychologically isolated.

The council has embraced the need for integrated assessment. It acknowledged that until quite recently there had been a ‘blockage’ in the assessment process based in Scarborough but it was felt that this had now been removed and the waiting period had been reduced to approximately 6mths. It was noted that during this time some parents had gone to Newcastle and had had a very good experience of the diagnosis pathway there. Unfortunately, this then caused difficulties back in North Yorkshire to the extent that one parent was accused by healthcare professionals, and I use the term loosely, of being ‘disloyal’. The council were aware of this particular case.

Another focus area is to give parents greater control and influence. Parents stated that they felt they had little choice when it came to choosing the right school for their child; that any choice was in fact removed. It was made clear that parents are the best sources of information about their child’s needs but that very often their voices are not heard.

Mr Terry then went on to talk about North Yorkshire being a Local Pathfinder for SEND. The council needs to identify gaps in provision and encourage better integration of services. They are aiming to achieve National Autistic Society accreditation for ASCOSS which may be difficult considering some parents experience (see above). I asked that they remove the requirement for students to apply to local post-19 colleges even when they had no hope of attaining the minimum entry level requirements. They seemed shocked and surprised that this was the case, agreed that it was pointless and promised to look into it.

He talked about the ‘Local Offer’ and that they were looking to introduce an element of residential living to provision in Scarborough. One of the parents present said that her children had chosen residential college courses because they wanted something to do after 4pm. I added that students are discouraged from mentioning extra-curricular activities when applying to these colleges becasue they are not supposed to be taken into account by the Local Authority. I also stated that courses needed to be ‘meaningful’ to students; not just opportunities for role-play. This is why residential living is an essential aspect of such courses.

Others attending the meeting were also able to highlight their own particular grievances. Mr Terry noted that they had had one or two cases brought to their attention at each consultation they had held and they had been able to look at them individually back at County Hall.

One parent noted that the provision of summer holiday activities was mired in unnecessary paperwork resulting in her son missing out on activities. Mr Terry did not see why multiple applications needed to be made.

Another parent who attended pointed out that the lack of social workers (there is only one) for the post-19 age group was having a serious impact on families in the Scarborough area. As a result she has two children who will be completing their studies at residential colleges this summer and will be coming home with no support package in place. She has been forced to resign from a job that she loves and which she is good at (in autism advocacy) as a result and pointed out that she and her adult sons will therefore become a burden to the state through no fault of their own.

I found this particularly depressing. What is the point of the council funding such expensive residential placements (approximately £40,000 per year) to give young people the independent living skills and job training they need if all they are going to do when they complete their courses is to end up back at home with mum and dad?

If parents or carers have been unable to attend a meeting and would like to inform NYCC of their views you can respond by the end of July 2012. I would urge all those with responsibility for young people or children with autism to make their views known. I will certainly be putting my views in writing.

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?

Galvanized!

News this week that, following the report published by the National Audit Office, the goverment plans to cut support for children with Special Educational Needs (SEN) galvanized me into action.

I had been intending to start keeping a journal to track my son’s progress as he makes that difficult transition into the adult world. Instead, I decided to start a blog to take into account the changes which would inevitably have an effect on Harry’s future.

I have never been a campaigner or an activist. I have barely any connections with support groups. But this news gave me a sleepless night. I lay awake thinking about all the things we do for our children and wondered how on earth some parents will manage if these reforms take place.

We only have one child with SEN. There are families out there with 2, 3 or even 4 children with varying degrees of need. Each child requires their own Statement of SEN and Individual Education Programme (IEP). Each has appointments with GPs/therapists/consultants. Each has their own particular behavioural difficulties which necessitate special planning in order to get even basic everyday tasks accomplished.

On top of that we have other members of the family we need to consider: partners, siblings, aging parents. Oh, and some parents also have to work…

And now the government wants such parents to take on even more.

Haven’t we got enough on our plates?