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