Eve's blog

Change of blog

2007-07-15T19:25:02+02:00

OK - I think this blog has probably run its course ... I have a new blog over at http://asdfriendly.org/. The URL for it is http://asdfriendly.org/blog/ultramum/. RSS feeds at the very bottom of the blog page :-)

See you all there

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Surprise!

2007-03-03T12:55:47+01:00

I was taking photos of spring flowers in the garden - trying to get views of the insides of the flowers by way of holding the camera really close and using the macro mode ... didn't use the screen or viewfinder at all ... then when I uploaded them to the computer this is what I found ...

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LEA meeting

2007-03-03T12:41:54+01:00

went better than we thought .. still may only be 10 hours but to share that with another child with ten hours so ... that's then 20 hours covered and he doesn't need velcroed support ... more a watching brief to check that he's understood and then kept on task.

It'll be interesting to see how they word it ... the statement needs to be watertight so that they can't turn round and say - well there isn't any suitable support that he can share ...

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All the way ...

2007-02-26T17:19:01+01:00

All the way my Saviour leads me—
What have I to ask beside?
Can I doubt his tender mercy
Who through life has been my Guide?
Heav'nly peace, divinest comfort,
Here by faith in him to dwell—
For I know, whate'er befall me,
Jesus doeth all things well.

All the way my Saviour leads me,
Cheers each winding path I tread,
Gives me grace for ev'ry trial,
Feeds me with the living Bread.
Though my weary steps may falter,
And my soul athirst may be,
Gushing from the rock before me,
Lo, a spring of joy I see!

All the way my Saviour leads me—
O the fullness of his love!
Perfect rest to me is promised
In my Father's house above:
When my spirit, clothed, immortal,
Wings its flight to realms of day,
This my song through endless ages:
Jesus led me all the way!

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Update

2007-02-26T12:31:28+01:00

Not blogged much recently - engaged in battle with LEA again. I'm going to start another blog specifically to blog the fight. Details to follow. Probably call it the 'Not Ruth Kelly Blog' :-(" class="middle" border="0">

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Job description

2007-02-17T22:06:53+01:00

This is a permanent post - HOURS: 168 Hours a week, 52 weeks per year. Time off: by negotiation with Statutory/Voluntary or Private agencies (NOT GUARANTEED) - No Experience necessary - No training will be provided - SALARY= £0 - Although Carers Allowance is available = £45.70 per week (subject to filling in long and complicated forms)

JOB PURPOSE: To provide a full parenting service to a disabled child or children. This includes promoting their human rights, ensuring that all of their needs are fully met and that they take an active part in family life and the wider community
ACCOUNTABLE TO: Partner, disabled child, other children and extended family

ESSENTIAL CRITERIA:

* The ability to love unconditionally (under extreme provocation at times)
* Boundless energy and patience
* The ability to work under immense pressure (sometimes/Frequently with little or no sleep)
* Must be prepared to work anti-social hours, with no sick leave or time off in lieu.
* Physical strength (this role requires a lot of manual labour, well developed shoulder and back muscles are therefore essential)
* The ability to balance the needs of this child with the needs of other children, and family life. (This could include combining this role with full / part time employment and/or study).
* A “Thick skin” (this role receives a lot of criticism, you will need to prepared to be stared at and judged by others around you at all times)
* The ability to skilfully negotiate, advocate and mediate on behalf of your child. (A good telephone manner would be useful)
* Excellent organisational skills (you will have to juggle a variety of appointments without the support of a secretary / personal assistant)
* The ability to multitask.
* Good networking skills combined with the ability to work independently and use your own initiative.
* Must be prepared to become skilled in non-verbal communication techniques and interpretation of body language.
* Must not be fazed by body fluids.
* Must have an empathetic nature, (able to work with children / adults who may be distressed)
* A good sense of humour is essential.

DESIRABLE: These skills will be learnt on the job and will be of distinct advantage to you and your child:

* An in depth understanding of your child’s condition, syndrome, impairment, this may include: Epilepsy (Administration of drugs, including rectal Valium) and/or Genetics - and /or Autistic Spectrum Disorders / “Challenging behaviour”- and /or Physiotherapy, Occupational therapy, speech therapy - and /or Sign language (Makaton, BSL) or other communication methods.
* Learn to use a variety of equipment, which may include: Hoists. Feeding tubes, Various wheelchairs and adaptations. AFO’s (leg braces) - You should also be prepared to have countless adaptations to your home. Which may include tracking for hoists, hoists, ramps, stair gates, locks on doors, which may have to be number locked, (a good knowledge of mathematics not necessary, but a good memory vital!)
* An in depth knowledge of SEN law, procedures and codes of practice.

* A knowledge of: The Community Care Act (1990), The Disability Discrimination Act (1995), The Carers and Disabled Children’s Act (2000), The Carers Recognition (and Services) Act (1995), The Carers (equal opportunities) Act (2004) - And other relevant legislation.
* A good understanding of entitlement under these acts would be an advantage. (see additional notes on legal issues, e.g. Complaints procedures, Ombudsman, Judicial reviews)
* Experience of working with other agencies, Statutory, Voluntary and Private including Health, Social Services and Education and attending meetings (with all, of the above, and an appreciation that you will have to repeat yourself, several times to each agency) a distinct advantage.
* A broad - base knowledge of local politics i.e. the holders of the purse strings. (Speaking at council meetings, writing letters to local newspapers, optional - but occasionally necessary)

It is possible that if/when your child does leave home you may be overseeing a Direct Payment and managing an independent living scheme – skills required for this include a knowledge of…

* Finance – Direct payments /ILF/ DLA/ Clients contributions / housing benefit and other benefits/ Tenancy agreements / Pensions
* Accountancy – Time-sheets /Wages / BACS / Tax / Employers contributions
* Management- Personnel / Recruitment induction/ Training / supervisions / appraisals.
* Health and safety – Risk assessments
* Law – employers and public liability / employment laws

This is extremely demanding and stressful position. You are required to support your child right across the life cycle. (It should be stated that retirement is not an option.) It requires a variety of skills, which you will have to be prepared to learn on the job.

It is recommended that you make contact with others in the same role, these colleagues will be a vital source of support by providing an unconditional ear, understanding, a shoulder to cry on and endless cups of tea (or occasionally something stronger) when / if required.

Given the right amount of support this job can give untold job satisfaction and be extremely rewarding. But, much of this will depend on your ability to negotiate for this support. For this you will need to be determined, assertive, proactive, accept you are in a minority, recognise diversity as a good thing, accept that you and your child will be discriminated against throughout your lives and that from time to time you will fail to achieve your goals. Success in this role will see you grow in confidence, ability and knowledge and become a powerful advocate for your child.

WE ARE AN EQUAL OPPORTUNITIES EMPLOYER

Failure to meet any of the above criteria will not affect your being considered for this position.

PLEASE NOTE: The Parental Leave Directive does not apply to this post and the right to apply for flexible working arrangements is waived.

Job Description - REQUIRED: MOTHER - FOR DISABLED CHILD

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So sad for my son ...

2007-02-07T22:10:12+01:00

He brought a piece of work home today ... the teacher had written "very untidy!" and the LSA had written on the work:

"Have given J the option - if he wishes to re-do at home - we would love his work on our wall."

What message does that give him

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:-(

2007-01-19T10:05:26+01:00

I am sooo tired

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Non-uniform day ...

2007-01-18T16:18:50+01:00

I realised as I completed my chauferring duties this morning that it must be a non-uniform day at the local secondary school. Hordes of teenagers walking along without their black uniform trousers on - they ALL had blue jeans on instead ... don't they realise that they've swopped one uniform for another

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A trouble shared ...

2007-01-18T14:23:42+01:00

Praise the Lord for Mums!

We had a long whinge on the phone today about the NHS (her problems) and the LEA (my problems) ... none of which have gone away but life seems brighter

(Note to self - make sure it's Mum's phone bill next time!!!! )

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Impact from this degree...

2006-12-04T15:57:53+01:00

... is like ripples on a pond.

I have been helping various people with issues related to autism and behaviour but more and more I find that it is a by-product, almost, of the degree in that my knowledge of SEN and statementing is being called upon more and more ...

The head of J's school asked me for advice at the beginning of the autumn term; I've advised people online regarding letters etc and the contents of statements and now I've just taken a phone call from the Diocesan Education department asking if I can advise the SENCo in one of their schools ...

I feel proud to be asked but also incredibly humble as well ... it's a strange feeling.

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What Colour Purple are You?

2006-11-15T01:06:30+01:00

You Are Grape You are bold and a true individual. You are very different and very okay with that.
People know you as a straight shooter. You're very honest, even when the truth hurts.
You are also very grounded and practical. No one is going to sneak anything by you.
People enjoy your fresh approach to life. And it's this honesty that makes you a very innovative person. What Color Purple Are You?

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Tesco Christmas pudding recommended by ...

2006-11-10T15:47:28+01:00

... the dog!

This was what was waiting for me on my return from the hairdresser:

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More like ...?

2006-10-26T22:34:57+02:00

My GGGGG Great Grandfather - I think I can see a resemblence ...!

This painting is by Hogarth and is in The Tate Gallery ...

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Hmmm...

2006-10-26T22:18:59+02:00

Not too sure about this Viv!

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Chest infection ...

2006-10-20T22:42:06+02:00

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Long Time - No Blog

2006-10-20T14:29:32+02:00

Life took a turn for the worse during the summer …
Basically too much to do and not enough time to do it ... so – here’s a catch up

Lots of problems with LEA withdrawing J’s support for SALT after his review but doing it in such a way that we couldn’t appeal to SENDIST.

We ended up looking at asking for a judicial review of the LEA's actions – we had until the end of Sept to decide but they were stalling us by not replying to letters They referred us on to their legal dept who have said they will reply in 28 days which was after the deadline for us to apply for the judicial review ...

We have had to find a specialist SEN Lawyer and photocopy all our evidence from last two years for lawyer … a mammoth job when you consider that this takes up three and a half lever arch files

I’ve also had to get evidence together re the lady who hit my car and then said there was no accident and wouldn't give me her details :-[" class="middle" border="0"> ... from last May… just had a letter from insurers asking if I’m prepared to go to court …

Added to which I have developed plantar fasciitis which is excruciatingly painful – so much so that I’m using a stick to walk at the moment – not the best time to have acquired a dog. Part of the treatment is to rest my foot – fat chance of that LOL!

On the positive side I have managed to attend the AWARES online conference on autism and made my presence known by tackling a few professionals about their papers.

… and we have finally managed to get the LEA to fund six sessions of SALT over the next academic year so won’t be going the judicial review path – saving time and money for us – which we are now about to spend by getting a private EP to review J and provide a report for his review in January when we will be discussing provision at secondary level.

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An addition to the family

2006-08-29T15:59:13+02:00

We got the phone call last Friday to confirm that there will definitely be an addition to our family ...

Max arrives on Thursday ...

Here's another piccie:

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:-(

2006-08-11T12:19:46+02:00

I hate summer colds

... and of course it started today when D and I are going out for a very rare night out ...

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I am a graduate!

2006-07-21T14:29:22+02:00

My results were in e-vision today ...

Year
2005/6

Conferred award
BACHELOR OF ARTS WITH HONOURS

Award Title
LEARNING, TECHNOLOGY AND RESEARCH (ULTRAVERSITY)

Classification:

FIRST CLASS!!!!!!!!!!!!!

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Hear hear!

2006-07-21T10:31:31+02:00

Earl Howe

"Even where a child has been statemented for special educational needs, local authorities will often fight tooth and nail against providing the support that is needed. I agreed wholeheartedly with the noble Baroness, Lady Thomas, on that topic.

Research by Brunel University involving 750 parents found that most of them viewed dealing with LEAs as a confrontational exercise and that the whole process was a source of extreme stress. Parents are stressed enough without that. We really should be worried by research findings such as those."

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A question I would like answered too ...

2006-07-21T10:18:56+02:00

from Baroness Thomas of Winchester 20th July 2006 House of Lords

"While recognising the financial challenges faced by LEAs, parents often have to resort to expensive legal action to compel LEAs to meet additional costs. In fact, the whole statementing process seems to be designed to make life difficult for parents and to be infinitely less supportive than it should be towards those who are looking after what are often very difficult and disturbed children. Since there appears to be no contingency for reassessment, parents become desperate and often a battle with the local LEA ensues. Have the Government any plans to address this unsatisfactory situation?"

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Not a result ...

2006-07-21T09:20:39+02:00

The SALT department don't know about the reinstated SALT by the LEA - is someone is telling porkies or are they just not communicating?

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Interesting start to the day ...

2006-07-19T08:58:26+02:00

... my alarm went off and I laid there half asleep/half awake until the sounds of screaming penetrated my ears ...

Next thing J launched himself into the bedroom saying we'd put the wrong clothes out ... which was strange as it was a school day and his school uniform was out as usual. When I said that non-uniform day was Friday he had another meltdown.

"It's pirate day!"

To give him his due he had said this to me when I picked him up from school y'day - but I had filed it in the "That's interesting" section of my brain rather than the "Oh - yes - that needs something sorting" section.

Cue to ring parent of another child ...

"What's this about pirates?"
"It was in the letter"
"What letter?"
"The letter they brought home on Friday"
"Ahhh... OK what do they need?!"

You've guessed what's coming ... he needed a pirate outfit complete with bandana ... and no - the letter never reached us.

Which at 7:40am, with 20 minutes till we left the house, was not helped by other parent telling me they'd hired an outfit!

Not being entirely sure of what to do for a bandana I sent J to look it up on the internet while I gave my teeth a cursory brush - more screams as the computer is not allowed on on schooldays and he couldn't explain to D why he'd turned it on and that Mummy had told him to ... Thankfully all the curtains were closed when I shot downstairs to separate the parties .. it was not a pretty sight!

I sent J off to choose any T-shirt and shorts that would fit the bill - thankfully he was happy to do this. Meanwhile I emptied drawers and boxes of scrap material to no avail for something to use as a bandana ... then finally hit on the idea of using J's necker from cubs!

Just about to set off through the door when we realised J hadn't had his Ritalin ... after all that he was only 5 minutes late for Breakfast Club - a minor miracle!

Where's the valium?

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Result

2006-07-17T18:16:25+02:00

It's amazing what a stiffly worded letter quoting the law will do ... SALT now back for J!!!!!

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I don't believe it - or rather ...

2006-07-05T19:45:08+02:00

... I'm not surprised.

The LEA has refused to continue J's SALT and, because of some rather devious wording in the statement that we didn't spot, we are unlikely to have any avenue to appeal ... anyone know a good SEN lawyer?

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Not a good day - update

2006-07-05T19:43:07+02:00

Had a letter of apology from the school - name cleared but now on diazepam to get through the school gates ....

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Not a good day ...

2006-07-01T01:05:17+02:00

3 hours in Casualty with J (no bones broken thankfully) followed by an accusation by the Head of J's school that, as a foundation governor, I have undermined the school management.

To cut a long story short - the accusation is based on a letter sent by my husband to the school inspectors re the lack of implementation of the school homework policy, which has been erroneously attributed to me and then blown out of all proportion - it has been referred to the CoG and the diocese - which led to a visit at 9:00pm tonight by the CoG.

I am extremely disturbed that my character and integrity should be questioned in such a manner, based on unsubstantiated ‘facts’, which are themselves based on a communication made by my husband, in confidence, to the Ofsted team.

I have been so hurt by this that I need to come to a decision whether I wish to remain a part of a team that would so hastily believe that I could act in such a manner.

I feel that I am due an apology from those concerned, as this issue has added considerable stress to me at a time when I am already under considerable stress from home issues.

I have just penned a letter to the CoG and am now off to deliver it through his door .. I may be able to get some sleep tonight then.

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Marks Confirmed

2006-06-21T20:51:16+02:00

All our marks have been confirmed by the external markers - just need official notification of the degree award now ...

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Finished!!!!!!!!!!!

2006-05-19T00:01:14+02:00

Five words to spare ...

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