Epilepsy - Why I hate homework

I dread it every day. I try to avoid it whenever I can. I pass the buck, make any excuse but in the end I have to do it - homework and I hate it.

What is meant to take only ten minutes lands up for us taking twice, if not three times, as long and on a Friday evening when you are tired and your son is tired and you are faced with three sets of ten minute homework briefs, you know you're not going to get to bed early...

Some would say leave it for another day when he's less tired and I do, do that, but sometimes I never get a chance, not because we can't but because I may try to get the homework done when he is having a "spate".

A "spate" as I call them is a series of interconnected absence seizures some of which I can see and others I cannot. For example in those I do see we have the classic vacant expressions, non-response to calling his name, maybe a slight upward rolling of eyes and maybe even a hand twitch and chewing motion at his mouth if they last for more than 15 seconds.

For the ones I don't see, the ones I refer to as part seizures (actually called complex partial seizures), he carries on, on automatic pilot either running or walking, carrying out a function and usually he is right back to normal, though maybe a tad confused as to how he got there, before you can make up your own mind. These are horrid ones because if he is thinking about needing to go to the loo he can actually do it which aint so hot in the middle of the school dining room, I am not saying he actually goes to the loo thinking he's in the bathroom, no he just wets himself I am not sure which would be most humiliating.

Like many who have stronger seizures the ones I assume people call classic epileptic seizures or Grand mal (for the uninitiated these are known as tonic clonic seizures) after a “spate” he can be exhausted, so much so that like last night he has to go to bed immediately even though it’s only ten past five.

And there's another thing he seems to know some things perfectly one day and completely loses it the next so sometimes he can read brilliantly and the next hour or day he's stumbling and fumbling over the very same words even though he is not having a seizure! Can you imagine how frustrating that is for him and how bewildering it is for me? In fact I go nearly demented. I just don't understand it and then I get exhausted by it all too. Sometimes I find it just easier to do the homework myself...

PS. As I understand it this forgetfulness is also part of his epilepsy and that is something I learned just now as I wrote this post. Do you know what it’s horrifying how much I have to learn so that I can help him. So tonight, sans homework, I go to the Parents evening armed with a list of reading and watching for the teachers at his school so that at least we know a little more about what we are dealing with…

For those who’d like to know more go to this BRILLIANT web site: www.epilepsymatters.com

I just love Canadians!

Review : Do you think I will ever be out of nappies?

Do you think I will ever be out of nappies? Seven years on and no let up.

I have tried to calculate just how many nappies that is and averaging eight a day for the first two years of each son’s life gives me a staggering 5840 plus a further 12 months for Bog Boy as he was potty trained by 3 at 6 nappies a day and a further 18 months for The Boy who didn’t potty train until he was three and half gives me another 5475 nappies then of course I have to add on the nights when both boys use pull ups.

Now Bog Boy was actually potty trained through the night as well but we’ll say he needed 1 pull up per night for 6 months and since then, for form’s sake and because his big brother continues to use them, 2 per week since then. The Boy has used at least 1 a night every night since then and occasionally two. Thus as far as pull ups are concerned 3.5 years for The Boy and 6 months for Bog Boy thus four years worth of nights to a total of 1460 pull ups.

So basically that gives me a grand total of: 12,775 nappies, pull ups and night pants of a variety of shapes, sizes and odd cartoon characters to haunt my dreams.

I dread to think of the cost….

Oh go on then lets hunt down an average cost for curiosity’s sake: 14.8p according to http://www.whatprice.co.uk/health/parent/nappies.html so based on that I have spent a total so far of £1890.70 a little bit over the UK average at £800 per child but then again mine seem to have taken longer than average to housetrain.

The Boy’s Absense Seizures (Petit Mal) is probably the main reason for his difficulty or as the doctors call it primary nocturnal enuresis which is persistent, involuntary bedwetting during sleep in a child aged five or over.

I just love the names they give these things but hate it when the health practitioners use it as a way to intimidate you. (Plain English bozos if you cannot communicate clearly you are NOT clever it just shows you have chronic inferiority issues and really should not be allowed to meet the public face-to-face. I would suggest getting a new job in a laboratory or else join the Antarctic Survey!)

Anyway, back to the problem at hand. The Boy and bedwetting or really the fact that the Boy desperately wants to have a sleep over either here or elsewhere. We haven’t quite managed it so far and naturally he realizes that at 7, he really shouldn’t be having to have pull ups. I can dress it anyway I like he knows and so do I that in normal circumstances this would not be happening. But we don’t live in normal circumstances and The Boy has to come to terms with the fact that he has epilepsy. It’s not really impinged too much up till now but with the change of school this term and, well, being much more grown up the ‘shoulds’ and ‘musts’ of society are starting to hit the mark. Where once my boy had not the slightest bit of interest in Football now he even knows who the players are, where my boy would be happy to let me choose his clothes now there is a full wardrobe display before he is certain he can venture forth (Thank the powers that be for a strict School uniform policy!).

We’ve tried numerous gadgets and fixes and basically the hassle and anguish they engender is just not worth it. So it’s nappies specifically designed for boys who wet their beds. Ones that look cool or else don’t make that awful  nappy noise like soneon is screwing up paper every time you take a step. Nappies that don’t look like nappies – though to be honest all of them do…

It’s a toss up now between Huggies Dry Nites and Pampers Underjams. On a practical front they both do the job adequately and as far as I am concerned that’s really all I can ask for. At present Underjams are leading the way as The Boy says they aren’t as noisy and feel nice but there again it might also be because they are new. They certainly don't peep over his PJs  so he could get away with it as long as no one saw him getting ready for bed but then again there is always the problem of what to do with a wet nappy in the morning!

I heard recently that Dear Charlie's brother was wetting his bed until 9 years old - only two more years then!

Brain cell overload...

I have just found out why men think they are better than women. Multi tasking.
Because in general women have to multitask more than men, they get in more of a muddle. Men on the other hand base their superiority on the fact that they can walk and chew gum – but face it folks, that’s it. If you asked a bloke to walk, chew gum, do the washing, pay the bills, get the children to school, let the dogs out, feed the chickens, get coffee for the builders, assess the number of bricks required for a wall, write children’s party invitations, do a little work then they would be as dippy as I am and there’s science to back it up as well! I know ‘cos I read it in the newspaper in a brief moment of calm when my poor brain only had to read and drink rooisboch tea.
Basically the report, which I read in a four day old purloined Daily Telegraph (I haven’t got round to ordering my own yet from the village shop after nine years living here so I rely on pre-loved newspapers left on trains, the ground, round today’s fish and chips), says that the brain can only deal effectively with two things at once and as soon as you add a third task (3 tasks! heck most of us have to juggle a whole lot more than that) everything goes to pot.
So the fact that I forget things on a regular basis and am considered basically unhinged is because I am over loaded and never more was this prevalent than today.
We are on Day Three of the new school and Mother has had to get up a whole our earlier everyday just to keep up with herself. The journey to the school only takes 10 minutes longer but those precious ten minutes make a whole lot of change necessary. Whereas before Mother could drop Bog Boy off at nursery before school i.e. at 8am she now has to take Bog Boy with her on the hour and a quarter round trip because Nursery doesn’t take anyone in before 8am and The Boy has to be at his new school by 8.15am a whole quarter of an hour earlier than at the last place. Thus the school run has been brought forward by 25 minutes. I can deal with that, but I don’t know the roads very well, Bog Boy complains bitterly THE WHOLE WAY and of course I as yet don’t know the new school routines. There’s also the fact that I don’t actually know anyone there anyway. I don’t know a lot do I?
Added to all that and the mild anxiety that it all engenders The Boy wants to invite all his new class to his party on Saturday. I agreed and there lies the rub by doing this one task too many I got myself into a whole load of trouble.
I delivered The Boy and his invites to the school on time and in the correct manner. I chatted to some of the Mummies and thought I had made a good impression. I wandered off in a bit of a haze thinking about getting Bog Boy to nursery and dwelling on the fact that I would shortly have to cross the A140 at rush hour in order to do so. Everything seemed to go fine and I was about to celebrate my achievements with a nice cup of tea when I noticed that I had not given The Boy his pills. The Boy has Absence Seizures (Petit Mal) and although missing the pills wouldn’t be too bad it’s also not good especially if he has to go swimming. So I returned to the school to give him the missing pills and to leave a strip just in case I forgot again with Matron.
When I got to the school I met with The Boy’s new form teacher coming out of the staff room at break time and we laughed about forgetting things and joked. Just as she turned to leave she asked if I was alright.
Me, querying: Yes
Her: Just that I had a Mummy asking after you this morning.
Me getting worried: Oh, why?
Her: Well she said that when she asked how you were doing you said not desperately well and wandered off!
Me, slapping my hand to my mouth: Oh GOD! I have no idea why I said that in fact I can’t remember saying it at all!
I really can’t remember saying it. I have no recollection at all of saying it. I now will have to go up to a virtual stranger at picking up time and apologise in front of everyone else too. OOHHH the embarrassment! The ignominy! I shall be forever marked…ah well better that than being all scary and hyper organised!

Bouncing off the ceiling

I’ve been bouncing on the ceiling – not necessarily what most people would have thought I was doing following an appointment at Addenbrookes with The Boy – but what I have done nevertheless.
It’s been one of those weeks – gone in a blur.
I can’t believe it’s been only seven days since Dear Charlie and I argued our way into Addenbrookes in Cambridge and took The Boy to see the specialist about his blanking/absence seizures (Petit Mal)
The Boy had a great time on the Super Mario giggling and laughing for most of the time -infectious little scamp. Unfortunately the same could not be said for me. I was grilled. I was rather taken aback and felt very small and stupid – I actually admitted to it. I blame it on the specialist’s bedside manner that got me that had me blurting out truths I thought I had hidden from the whole world – I am an unobservant mother.
It was just like those dreams you have when you are happily doing something usually in a school/office scenario when you suddenly realise you are stark bullock naked – it felt just like that: exposed and rather chilly.
Of course the specialist was just doing his job and getting the facts. Absence Seizures are tricky little things and of course The Boy’s ones would be atypical wouldn’t they? I felt I was being asked to justify why I was having the appointment. First I was told that what I described about the blanking was wrong, then the history was incomplete, then that teachers had a tendency to blame lack of attention in class on absence seizures and was I sure.
My brain always has a problem when too much information is heading my way especially when it seems to be coming across in an aggressive manner. My tongue sort of curled up and any connection between it and my brain was lost in translation and I sort of stumbled out my answers feeling like a total idiot.
In a nutshell The Boy zones out for a few seconds frequently during the day. You can’t snap him out of it by shouting at him – he just does not hear and when he comes back he usually looks at you as if you are quite bonkers as if to say: “Why on earth are you calling my name in a middle of a conversation?”
Usually he continues where he left off, sometimes in mid sentence. Other times he looks quizzically at you for guidance as to what he was doing or talking about.
I’ve seen him blank riding his bicycle and going right over the edge of our deck without noticing. That meant he dropped some 2ft to the ground. It was bit of a shock I can tell you and required lots and lots of cuddles. Both he and bike were fine thank God. But it certainly put me on alert as he could quite as easily tried to go across a road in front of a car!
For a long time I thought it was because he was tired, or that it was to do with growth spurts, as I would only notice them occasionally at supper time or if we were talking. Since the longest is only five seconds and the shorter ones merely a heartbeat I suppose it was amazing anyone picked them up at all.
It was picked up in Nursery when he was just four but didn’t get noted in his Reception year despite me asking for it to be monitored. His form teacher wasn’t exactly concentrating and I have yet to get to the bottom of that one – suffice to say I will be having a written explanation from the school for the specialist as I was definitely noticing the absences at the time but putting the symptoms down to tiredness at the end of a school day and the ones in the morning to having to get up too early!
It was his Year One form teacher who brought it up with me at the beginning of this term; she’d seen something similar before in a young boy, which turned out to be Absence Seizures/Petit Mal – I was so grateful that she’d noticed and that it wasn’t just me. But I also felt so completely stupid for not going with my gut feeling – I knew something was wrong. Perhaps I was too scared to find out.
So that left me in a small room being bollocked – well not exactly, it just felt like it.
Luckily I was informed that the specialist always kept an open mind and in the way that spoke volumes for similar treatment for weeks to come we were whisked into making an appointment for an EEG.
Which is where The Boy and I have been this morning but still doesn’t tell you why I’ve been bouncing off the ceiling.
The Boy was brilliant and liked the idea that he would have wax in his hair: “Just like a rock star!” he says to me.
He is lying on a trolley bed propped up and both neurophysiology technicians are attaching wires to his head. They chatter to him and he to they in a non-stop sort of way pointing out the pictures in the room, the panic button, the lights, and all sorts. They talk about his school and his mates and what he likes to do.
Then he’s asked to shut and open his eyes, to look at a flashing light and to blow on a windmill to make it spin.
I notice he blanks a few times during this and am glad that the whole session is being recorded – at least there will be proof now. Then suddenly he flops eyes glazed and it’s not a few seconds this time it seems to go on for ages but I’m sure it was only really about 10 seconds. My heart leaps to my mouth and I make a move towards him to gather him up, to protect him. Neither technician seems worried and The Boy perks up again unbothered. It takes a while for my heart to stop racing.
He spends ages choosing his badge at the end of the session and then we sneak a hot chocolate and brownies in the canteen before returning to normality.
His return to school just before lunch is worthy of the rock star he wanted to be earlier. There are a babble of questions and suitable gasps at the answers. I wave him goodbye and return home to work.
There are a lot of e-mails and as I go through them I come across a name I don’t recognise. I open it and there it is – we’d like you to join our team to run in the Flora London Marathon 2009….I’m bouncing off the ceiling with excitement – this is like: Hey WOW!!!!! Now I can do something – I’m going to be raising money for Epilepsy Action…

Just another excuse...

Everything is grinding to a halt and all the things that do need doing are not being done and all the things that could be left, or are of no tactical advantage, have become incredibly exciting and I have to do them NOW.
There are drifts laundry under the stairs, unopened post dumped in mounds on what is left of the kitchen table, dust bunnies are breeding and as for work – forget it!
Hands up - I am not the most organised person on the planet. As Dad would say I couldn’t organise a piss up in a brewery. I freely admit that - so what is causing the stoppage: The Boy.
To put it more accurately I am in full flooded worry mode after the news that The Boy has Petit Mal – well the GP is pretty certain that it is and now we await our first consultation at hospital to find out how to deal with it.
My mind is so full with questions and concerns and so scared that I cannot articulate any of them. I know from Googling that it can be treated easily. That it is more than likely The Boy will grow out of it. But I can’t help feeling worried – an unspecified worry that niggles all the time.
The day after the news, even though I shed not a single tear, I felt as though I had been weeping constantly. I was exhausted.
I felt frustrated that I could not get it sorted out at once and being told initially that I would have to wait 60 days for a first consultation had me spinning almost out of control.
I don’t want to have too much information before the first consultation in case I start to take issue with the experts – which I understand is not the best way to get them on side. Nor do I want to go in a total ignoramus - so betwixt and in between I sit. Do I or don’t I?
And it’s spreading into the other compartments of my life and I feel a bit like the Titanic about to go down with the bands still playing.
I spent the whole of Friday begging various Epileptic Charities to take me on for the London Marathon via a series of e-mails and slightly mad telephone messages. It just seemed the best way I could do something, the best way to keep myself occupied enough so I wouldn’t cause confusion in the household before the weekend.
All of them were delightful and if they were slightly bemused by being bombarded they took it in their stride. I do hope I get chosen – it would keep us all amused if nothing else this winter.
Or is it just another excuse to be disorganised?