Mad World

Friday 6 July: James
James is Tom’s nephew. He has blonde hair and eyes like a summer sky; cornflower blue and fringed with sweeping black lashes. He’s a very observant boy who notices the slightest changes in anyone’s appearance. James has just turned thirteen and for his thirteenth birthday his local authority decided to withdraw the free transport that takes him to the school where he feels secure and happy on the basis that he is now perfectly capable of walking the three and half miles or catching a bus.

Fair enough, you might say, quite right that a child of his age should fend for himself. But unlike his older brother and sister, who are already making their own way in the world, James is a Peter Pan boy who, because of his considerable mental and physical disabilities, will always need someone to take care of him. To expect James, with his weakened left side and limited understanding, to make his own way to his special school beggars belief.

Well, perhaps, his mum could take him to school, you might suggest, not unreasonably, and of course she could. Unlike many of us, though, she doesn’t have the benefit of flexible hours; her job depends on her being there at a particular time so she would have to give up her job to take James to school and lose her much-needed income. But it’s not just one family that would be affected if James’s mum had to stop working. You see, she’s a teaching assistant in mainstream school where her particular role is to help a child who knows her well, a child with special needs…

Wednesday 11 July: Charlotte
Charlotte is my seven-year-old niece. She is quick, sharp and cute as a button so when my sister noticed recently that there were times when Charlotte appeared to go off into a daydream she was immediately concerned.

Epilepsy is something we know about in our family. My sister’s epilepsy started after her baby injections and continued into her early adult life. The seizures, major and dramatic though they were, were in some ways easier for her to deal with than the sledge-hammer medication that was used to treat the condition then, and the sometimes raw prejudice and fear that she met with.

Having watched Charlotte closely, my sister was sure that she was having absence seizures and took her to the doctor for confirmation. The upshot was that Charlotte was put on a waiting list to see a specialist. How long do you think a child would have to wait in these circumstances? A month? Three months? Try eighteen months. Eighteen months is a very long time when you are watching your child’s condition deteriorate and you know she needs help. Oh, and she’s been told off by her teacher, even though you’ve shared your concerns with the school, for ‘rolling her eyes’ at other children.

In the end my sister and brother-in-law used the limited access they have to private health care to get an appointment for Charlotte. No, they’re not ‘fat cats’. My sister is a lawyer who works in a very demanding field and my brother-in-law regularly puts in 50-hour weeks in his job. Like any family with young children and a mortgage in the south-east they’re hardly rolling in it.

So Charlotte went to see a specialist. Her epilepsy was confirmed and the consultant thinks she’s having 75-100 seizures a day. The good news is that he’s optimistic that her condition is age-related and that she will grow out of it in a couple of years. With medication she’ll be fine. The risky time for Charlotte is now, until her medication is sorted. The absences mean that she needs to be watched when swimming, bathing, crossing the road etc, common sense precautions which everyone who takes care of Charlotte needs to be aware of. Imagine what might have happened if Charlotte had still been on an eighteenth-month waiting list.

The painting is 'Fishing Floats' by Tom Tomos


Goodness..struck such a chord, as you know my eldest boy has epilepsy and was really poorly few years ago. However He was 'fortunate' in that his fits were so big that he didn't have to wait for treatment/diagnosis. He is now on large amounts of medication and doesn't have the grand mal seizures but he is always daydreaming/absences.
I wonder if people think I am neurotic-apparently they tell me that is what all teenagers are like!! Dolly day dreams/heads in the clouds! But I know different!! Your sister is right too and I have huge sympathy.

ANd little James-darn those authorities...I am sure Chris, you can pen together a wonderfully worded letter of complaint to them...and the local MP if you have to!!


warmest wishes
It really does begger belief doesn't it. I really deos sound as if English Education is heading back into the dark ages... I was told by the very well thought of Head of a beacon school in the Uk that "they did not believe in Dyslexia" ah well, that's alright then isn't it what a relief! I suppose as they obviously do not beleive in Epilespy and learning difficulties either I am sure hundreds of chidlren will suddenly get better thus saving the country a fortune on health and special education!!! I wonder Mr and Mrs Blair sent their precious boys to The Oratory in London when the state system is so forward thinking!!
Cait O'Connor said…
Both sections of your blog made me very angry but sadly not at all surprised. Sad, mad world/country we live in.
Elizabethd said…
I just feel so sad to hear this. When the 199 act came out it had a huge focus on children with Special needs, and so much was available to them, transport, classroom help etc.
By the time I retired in 1998 the whole thing had been watered down, money went to 'the school' which meant that the head could use it for anything, assistants were hugely cut back, and try asking for a wheelchair ramp! Oh no no, her assistant can carry her to the loo.
What has happened to our education systrem. I'm glad I'm not in it now.
Elizabethd said…
PS, that should read 1979 Act, Baroness Warnock.
Crystal Jigsaw said…
Well if you ask me it's just bl***y typical. Too much money is being spent in this country on things like Olympic Games logo's and Millennium Domes etc etc etc when what it could be spent on is improving the apalling conditions in which our disabled (& able bodied in some respects) children have to live. School transport have no right doing that and I am sure you will have grounds to appeal and win. As for the NHS. If my child's life was in jeopardy in any way, shape or form I wouldn't hesitate to scrape together every penny I had to go private and get seen to within a reasonable time.

Please forgive me for going on here but as you may know I am epileptic myself and suffer from many absence seizures per day (don't tell me doctor tho or she might stop me driving again!) and Amy is disabled. She does have school transport at present but that's something I will blog because that's another "beggaring belief" story.

Yes. It is indeed a "Mad World".

Crystal xx
Pipany said…
Unbelievable Chris and how upsetting for you all. I hope they both get the help they need so clearly xx
Preseli Mags said…
Both cases leave me gnashing my teeth with anger. 'Authorities' try too hard to be a one size fits all. It never works. I hope James and Charlotte both get the care they need.
muddyboots said…
something somewhere is wrong, money being poured into unnecessary things & withheld from important things.
I think this country is going mad! And here are two examples to back it up!!
HappySnaper said…
This comment has been removed by the author.
HappySnaper said…
Our daughter was diagnosed with a very serious eye problem at the age of 7 that threatened sight in one eye, we were told we may have to wait a year+ for treatment but mentioned we had a company Bupa benefit so she was treated in weeks, of course we accepted but left feeling we had jumped the queue due to being in a fortunate position. This was not right, health care should be based on individual need and not ability to pay. We did try to take action against our GP for ignoring the obvious problems that lead to the severity of her condition but were faced with a closing of ranks in the health service !
By comparison this was far from your own experiences and I can only admire the strength of you and your family for what must be very difficult times.
lampworkbeader said…
I'm speechless that two children with such obvious special needs should be treatd in this way. Are both these young people protected by 'Statements of Special Educational Needs'? If not I think they may be entitled and this would certainly mean that their educational needs could be met at least.
Zinnia Cyclamen said…
So sad, so ridiculous, so infuriating. I wish I could add 'so unusual'...
elizabethm said…
So angry and sad to read this. I have a very good friend with epilepsy and the idea of charlotte not being seen for 18 months beggars belief. the very best to both families.
Exmoorjane said…
I agree, so much in modern life doesn't think or care about the individuals involved. Re the epilepsy, my niece had these 'absences' - she used to call them her 'dreams'. Medication worked well for her but she stopped it when she was about sixteen as she decided that her dreams were part of her and that other people just had to get used to it (I was always amazed at that and so proud of her attitude). She went on to do her A levels and degree and now works in publishing....without a backwards glance. You know, funny thing, I don't even know if she still has them.....she never ever mentions it. So, bottom line, yes there's a good chance they will disappear or lessen as she gets older... But it is enfuriating having to wait that long for diagnosis and that she is told off at these people have NO training in this sort of thing? Grrrrrrr.
Eden said…
Incredible. If we can't spend money on our children what is the future of this country? Makes my blood boil.
KittyB said…
It is astonishing that our children should be constantly let down by the system.They are our most precious commodity - they are the guarantee of all of our futures. Roll on a government that realises this and cares.

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