Category Archives: Uncategorized

And Then There Were Three

It’s been two weeks since we took Harry to college and I’ve had to cut down on the amount of milk I buy. And bananas. And yoghurts. I’ve put the orange squash at the back of the cupboard, along with the crisps.

It’s funny the little things you notice when your child leaves home, even if it is only temporary. Doors are left open to allow the sunshine to filter through (Harry likes all doors shut), the 3D cinema glasses have stayed in the drawer (he likes them out) and the furniture in his room is permanently clear of figurines which makes cleaning easier. However, I now have the jobs of emptying the dishwasher every morning and clearing away the dishes at the end of our evening meal.  These were tasks Harry had adopted as his own and he was very good at them. Molly – one of our black Labradors – has lost her sofa-companion and I’m sure she misses his constant kisses.

What I thought would be most noticeable, isn’t. For the last twelve years I had to be at home by 4.15pm on a weekday in order to be there to meet Harry’s school transport. However, our daughter has noticed that she hasn’t been nagged to “get a move on” at 4pm so the end of the school day has become a bit more relaxed for her.

Harry’s counsellor got in touch during the week to say that she has spoken to him on several occasions and feels that he is coping and settling well into the college routine and life.  (Such a relief). He is enjoying working hard and starts his new timetable tomorrow. This will see him starting to gain valuable work experience in hospitality and retail. Football is scheduled for Wednesday evenings. (I didn’t mention the laces). He had been on a coach trip to see a musical at one of the regional theatres and was booked onto another to see a production of Peter Pan this weekend. (He will be in his element and they will have a job to stop him joining in).

She welcomed my suggestions as to how the college could have helped us and other parents on induction day and they have already put photographs up on the bedroom doors. They will look at implementing some of the other ideas next time. I am so glad that they are prepared to listen (and act upon) parents’ concerns promptly and this fills me with confidence.

And she wondered whether a member of staff could support Harry to Skype us so that we could have a more direct means of communicating with him? Now, that really would make a difference and I am looking forward to seeing his face on screen.

What Does The Future Hold?

Last week it was my husband’s 60th birthday. There were  balloons, there was cake and trifle; champagne corks popped, the family gathered and celebrated.

As we get older, what does the future hold for our children?

As we get older, what does the future hold for our children?

However, this week I can’t help contemplating the future: for us and for our children. The numbers don’t lie. My husband is 60, albeit a young-at-heart, doesn’t look sixty, 60. His father died at the age of 77 and I know this weighs on my husband’s mind. How many years does he have left? 17? The truth is, none of us know.

With that in mind I wonder how many of you have made a will? You might not have a fortune to leave to your loved ones but if you have a child with special needs you  most certainly have an opinion on who you would want to bring up your child, how and where you want your child to be educated, what kind of future you envision for your child. I know I do.

You can make provision for your child by including a Letter of Wishes with your will. In this you can let those left behind know what your plans are for your child. When Harry was younger my Letter of Wishes included who I wanted to act as guardian, that I wanted him to stay at his special needs school until he was 16 and where I would like him to go for further education. I did the same for my daughter with the proviso that her wishes must also be taken into consideration.

If you wanted to go further you could let your executors know where your research is kept, include prospectuses, etc. Consider what guidance others would need in your absence. I try to keep my husband informed about all the little discoveries I make which could have an effect on Harry’s future.  But if I wasn’t here would he be able to remember everything I’d told him. Of course not.

In the course of completing the Learning Disability Assessment I finally got round to filing all the current paperwork relating to Harry’s education and welfare. It occurred to me that this equates to his EHC plan and would be the first port of call should anything happen to me. A big black ring binder contains:

  • Last 12-months e-mail correspondence pertaining to Harry
  • Draft LDA (completed LDA to be added in due course)
  • Most recent Statement of SEN and Annual Review
  • Most recent reports from all agencies involved with Harry
  • His social services needs assessment
  • His home-to-school transport arrangements
  • Financial statements, DLA award details, Carer’s Allowance correspondence
  • Ofsted report, prospectus and correspondence from Harry’s (hopefully) post-19 college

To this I am considering adding things like:

  • A list of names and addresses of all those people/agencies who have dealing with Harry
  • Details of the blog and Twitter account
  • A list of organisations which I feel may be useful for Harry in the future: independent living, housing, etc.

We don’t know what the future holds but there are lots of things we can do to help shape the future for our children.

Edward Timpson MP Clarifies the Proposed EHC Plan

Last week I was sent a .pdf copy of a letter which Edward Timpson MP, Parliamentary Under Secretary of State for Children and Families, sent to Christine Lenehan, the Director of the Council for Disabled Children. I am not sure how widely circulated this letter has been so I thought it worth reproducing it here in full.

The letter is dated 22 November 2012:

Dear Christine,

SPECIAL EDUCATIONAL NEEDS PROVISIONS

I am delighted to be writing to you as Parliamentary Under Secretary of State with responsibility for special educational needs and disability.

As you know from our recent meeting, I am committed to reforming provision for disabled children and young people and those with special educational needs (SEN) and am well aware of the challenges in doing so. Parents should not have to battle to secure the support that they think should be readily available for children and young people with special educational needs and disability. However, in reforming the system we will not lose the aspects that work well. I want to be absolutely clear, the protections that parents and young people have in the current system will be carried forward into the new system (sic). I know first hand the importance of having the highest ambition for children with additional needs.

The Government’s Bill will lay the foundations for our reforms alongside detailed statutory regulations and guidance. I know that parents will be nervous about changes, particularly where they have had to fight to secure the provision that their child is receiving. I want to reassure all parents that our intention is for a better experience for families in a reformed system with a new focus on helping young people towards real life outcomes, including independent living and paid work.

In the meetings that I’ve had with voluntary and community sector organisations and parents I’ve been reassured that we’re moving in the right direction. But there have been some issues raised about the details surrounding the draft clauses that we published. I want to provide reaasurance where I can and ensure clarity where I see misunderstandings have arisen.

The CDC has helpfully provided a list of the main areas in which misunderstandings appear to have arisen and I address these in turn.

1. There is no right to request a statutory assessment and hence no trigger for the right to appeal against the decision of a local authority not to assess.

Parents will continue to have the right to request an assessment and the provisions will go further and ensure that others like a GP or health visitor are also able to make a request. I have heard parents’ concerns about the lack of an explicit right for parents to request an assessment and as I made clear to the Education Committee, I am prepared to amend the clauses as necessary to clarify this.

2. There are no timescales

We will set out in regulations and a new code of practice the detail of the time that parents have to wait for an assessment to be decided. We will look at how we ensure we can reduce the overall time it takes for an assessment.

3. There is no duty to make the provision in an EHC Plan

There is an express duty on the local authority, in the draft clause 21(1) to secure the special educational provision set out in the plan.

4. There is no duty to ‘specify and quantify’ the provision to be made in an EHC Plan

There was no intention to reduce the duty on the local authority by changing the wording of ‘specify’ in the Education Act 1996, to ‘set out’ in the draft clauses, and I have asked officials to change the wording back to ‘specify’.

5. Mediation is compulsory and there are anti-parent penalties

There shuld be no delay in trying to resolve matters as a consequence of independent mediation. The two month period that a parent or young person would have to trigger an appeal would not be affected. The bill includes powers for regulations setting time limits.

The purpose of the pre-legislative scrutiny stage is to ensure the draft provisions will deliver what we want. Therefore, where the draft clauses are unclear, I have made clear that I am happy to go back and look again at what will reassure parents and give very clear messages to professionals.

The 20 local area pathfinders that are testing the reforms are an essential element for learning how the proposed reforms will turn out in reality on the ground. That is why I have decided that we should extend the current programme for a further 18 months beyond March 2013, through to September 2014, and we are beginning to examine the best ways of spreading best practice from the pathfinders to the remaining local authorities. I shall have more to say about this in due course.

Further, I have decided to extend funding for the Achievement for All programme, which has led to significant improvements in academic and wider outcomes for pupils with SEN.

I do hope that this reassures parents and would be very grateful if you could pass these messages on to them.

Yours ever,

Edward.

Edward Timpson MP

Parliamentary Under Secretary of State for Children and Families

A Trip to the London 2012 Olympics

On Tuesday we went on a once-in-a-lifetime trip to see the London 2012 Olympic Games. And when I say ‘we’ I mean 3, rather than all 4 of us.

We had made the decision when applying for tickets that we would not take Harry. Having returned I am convinced we made the right decision. Harry gets very nervous in crowds and the Olympic Park was nothing if not crowded, let alone the tube travel to get there… For the first time I can remember Harry had told me only last week (when we visited the Ryedale Show) that he felt nervous and held on to my hand when we negotiated the queues. I suffer slightly from claustrophobia so when our return tube train came to a standstill at Canning Town because of a points failure I had to get off and find an alternative route back to our hotel. Harry would have hated it.

Having thought about the things he wouldn’t have liked, some of those he would have loved: the giant screens in the British Airways Live Park; the music played in the Stadium; the cheering; seeing the Olympic flame and the antics of Wenlock and Mandeville. He would also have responded well to the volunteers all around the Park who were more like performers than stewards. As we left the Olympic Park at 10pm they had people singing “If You’re Happy and You Know It” and doing all the actions as they made their way to the train stations. Brilliant!

Yesterday we celebrated our wedding anniversary by visiting the Munch exhibition at Tate Modern, followed by a slap-up lunch at the Oxo Tower. We would have done neither of these things if we’d had Harry with us. In the past we’ve had to have eyes in the back of our heads to check that Harry wasn’t wandering off or touching something he shouldn’t. And there were so many potential ‘sticks’ at Tate Modern it was unbelievable!

In the meantime, Harry has had three days with Grandma and Auntie Ivy, being spoilt rotten. We promised to bring him back a T-shirt (but in truth I got that from Sainsburys before we left) and couldn’t resist some Andy Murray-style sweatbands and a gold Wenlock. He’ll love them.

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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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