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Wednesday, 30 November 2011

Home Ed: The Whys and 'Why Not?'s

We're still at home! That's nearly four weeks and Scooby went for his third chemo intake last Thursday. So I can take a break from the medical updates to talk about school instead!

I can't really assess at this stage how 'well' it is going, but I'm certainly glad we're doing it. Over the summer, we went for a daily structured approach (apart from the weeks we went on holiday) and it seemed to go well. There was a timetable for each family member and things had a natural flow to them, which gave me the confidence to make the decision to home educate, but then the last week of summer hit and things have been haywire since then. The schedule had to go out of the window and although I tried to bring it back on calmer days, it had lost its usefulness as everyone was out of it rhythm. Also, Scooby could no longer do things independently, so neither he or I could do what we were doing before. So we shuffled and rethought and after several doubts about the whole thing, I decided to loosen up in some areas and firm up in others and things seem to be working well again.

The point of homeschooling was to take a break from the disjointed way we were living and try and to find a flow that made our family life and the kids' education stronger and more fluid. Last year was spent in a haze as I tried to keep up with four different timetables including school, preschool, child-minder and medical or educational appointments. The two younger ones slept at really irregular times because of their time spent in the car and would be tired and grumpy in the day and wide awake in the evenings. Scooby would manage half a day at school some days, and other days not at all. There were days I had to go and pick him back up after half an hour; and times when I'd wake Baby early from her nap, drive Scooby to school, realise he was too shaky to stay and have to bring him straight home again, then endure a full scale medication-fueled tantrum because he'd wanted to stay. He would eventually wear himself and fall asleep, at which point I then had to wake him up because it was time to pick up his brothers from school... Not fun.

Added to that was the fact that Ace, who has always had a strong speech delay and needed extra staff support at school (still waiting on a diagnosis for him too!) was retreating more and more back into his non-communicative state that we'd worked so hard to get him out of. He would come home and switch off, and I would still be frantically running round trying to get all the basic everyday jobs done that all the car time and grouchy toddlers had prevented me from doing during the rest of the day, so I wasn't in a place to be able to help him. Richard worked long hours on two jobs so he often wasn't home till late so he was exhausted too - and even Turtle had developed such a bad nervous twitch that we were considering taking him to the doctors!

During this time, I was following a few other mum bloggers to fuel my enthusiasm and keep me in perspective, and I was intrigued by a couple of them who home-schooled. Their way of life seemed so different to the way I was living, and I liked it. Then I got closer to a good friend who was home schooling, and had some good conversations and insight from it. I started researching it, and realised it could actually be the right thing for us at this time.

I was more surprised than anyone - my previous perception of home education was not a good one, and like most people, for three large concerns:
 1. How on earth can one person teach a child everything they need for the whole of their life when people spend years learning their specialised subject before they teach it? Surely that child will grow up with a really limited education?

 2. What about the socialisation? Cutting a child off from regular contact with his own age group is not setting him up to be able to cope with a wide variety of social situations in the future.

 3. Every mother needs a break! How can someone's sanity cope if their kids are with them all the time? It would drive me insane!

That's what you were thinking too, right? :)

Well, I'm not going to answer all three of those now (I'm tired and I want to go to bed), but let's look at the third one, shall we? As you can see from the above, I wasn't actually getting a break anyway. I had at least two children with me all the time, except for a few weeks in a row where I managed to wangle a two hour child-free period on a Monday morning, at which point I would run through my house like a headless chicken, managing to make a very small dint in the chaotic mess that was my house, which would be completely undone by Wednesday. It took me more than two hours to drop everybody off and pick them all up again for the sake of that 'me-time', and I had to pay money to do it! The lack of focus on anything other than getting everyone where they should be (including into bed...) was killing me.

Then, I spent the summer researching pirates with them, and we all loved it. Suddenly, we were all engaged in something together, coming up with ideas, playing games, reading stories, building a giant pirate ship, going on treasure hunts - and part of me woke up again. I was more chilled and relaxed and eager to spend time with them. The mummy-guilt that comes from always running out of time to do the things you wanted to do with them wasn't there. The house wouldn't have looked any tidier to an outsider, but I could see things changing - by being home more, I was able to keep chipping away at each job, and the boys could do it alongside me, instead of the frantic military style tidying we had always tried to do before at the end of the day - you know, the You-Will-Not-Leave-This-Room-Until-It's-Done type tidying.

I found that when I stopped searching for a break from them, I didn't really feel the need for it anymore. I just enjoyed them instead. So many mums of grown-up children have said to me that if they could go back and do it again, they'd home school too for the same reason. I'm not saying I don't get tired and wound up with them, but with less time pressures, we can slow thing down and have less of the stress points that we had before, and we can adjust our days depending on how we are all doing. With Scooby the way he is, plus two preschoolers, I wouldn't be getting time on my own anyway, so it made sense to me to get more of a handle on how we spend the time and make it better!

That's point three in a nutshell - will I still be thinking like that in a few months' time? Who knows? :) I'm viewing this as a break from outside pressures at the moment, so we may go back to how things were, or we may make a permanent decision, but for now I'm just happy to enjoy the time we have all together.

Friday, 18 November 2011

A Sigh of Relief



This is what I wrote a couple of weeks ago in hospital:

Life for us in many ways at the moment is a living nightmare. While we struggle to find a way to keep Scooby stable, he is constantly shaking and usually on the verge of a seizure. When he tries to move himself - as young boys do, because even if only one of their four limbs work properly, they will still attempt to move around the bed because they are not designed to sit still - he usually slips and bangs his head or gets stuck in a difficult position or brings on a seizure because of his movement. He needs us to dress him, feed him, hold a book for him and take him to the toilet. So we can't really leave his side for more than a few minutes. If one of us goes upstairs to get dressed or put laundry away, we have to make sure the other one is on duty on the ground floor. We take it in turns to sleep on the sofa as his hospital bed is in the living room, so we can be with him through the night. Richard tried going to work last week - he was only there three hours before I had to call him home, and he arrived back at the house at the same time as the ambulance. We can only seem to make it for two days at home at a time, and it’s become far more stressful having him at home than at hospital because there are more rooms, more children and more responsibilities to meet, and far less medical interventions at hand to help.

The stress on us is hard to bear but it’s far worse to see him struggling with his lot. He has rarely complained in the past, not even when his legs stopped working, but now that he can’t use his hands, he can’t do all his favourite things like colouring, writing and playing board games. He can read a little bit but we have to position the book for him and he can only manage a few lines before his eyes ‘go funny’. A lot of the time he just has to curl up on his left side to hold the shakiness back, and he watches TV and listens to books on CD or tells me what to write or draw in his activity books while he watches.

For some reason – I hope it’s due to the medication and not The Thing in his brain – his seizures have changed. They used to be short and sharp, so he would still be conscious but it would take over his whole body in spasms, but now they are shallower (sometimes we can’t really tell he’s having one – he tells us he can feel it and then we see little jerks in his hands and feet) and last for what feels like ages. We can give him rescue medicine up to twice a day if they go over five minutes, but each one lasts between ten and forty minutes and he’s having about ten a day so it doesn’t seem to be working. So once we’ve given the medicine twice and he’s on his fifth or sixth seizure of the day, we have to ring an ambulance to transport him safely into hospital. So far the only medicine that stops them properly has to be administered through a canula and there also happens to be a worldwide shortage of it - last time we were told that there were only five vials of it left in the hospital and they’d come from America and there was no chance of getting any more. (We were also told that if Scooby needed all five vials and a blue-light trip to hospital everyday so he could spend the nights at home, or free bed and board for as long as we wanted it, then we could have it all, cos that’s how great our NHS system is and I think the staff and the system are AMAZING – we are so blessed to live in this country.) So he has the medicine there and has about twenty-four hours relief from seizures, but by the time he has been monitored for a couple of nights there and he comes home, the cycle has started again.


I could have written more, about the stress and the unpredictability and the strain on family relationships and the chaotic mess that our house was turning into, but I stopped there because I knew I wasn’t going to post it up as it’s too negative and depressing and I hate being those things, and there was, for the first time in this journey, pretty much nothing positive to add. He was hanging on by a thread and so was our sanity.

But I can post it now because I want to show you the contrast. Two weeks ago, just after I wrote that, he changed anti-seizure medication for about the ninth time. He came home on weekend leave from the hospital and we carried on with the above, with slightly less seizures. He went back on Monday but he seemed more stable so they discharged him. We managed three, then four, then five nights in a row, and just as we were thinking he would have to go back in because the seizures had increased again, they suddenly changed in temperament back to how they used to be – short and sharp and over in less than two minutes. And then, after seven nights, they stopped altogether. And in the meantime he was beginning to do things we hadn’t seen him do in a long time. He was sitting up unaided, and able to hold a juice cup.  Then he started to shuffle on his knees on the floor while he was playing with his brothers, and trying to hold a spoon at meal times. Then he was able to climb from the floor onto the couch, and feed himself (very messily!) and grasp a chunky pen enough to be able to write very wibbly-wobbly letters. And he seemed to sort of wake up again too. His loud, excited voice was back (as well as his piercing ‘I-need-something-right-now! voice) and his words stopped being drawn out and slurred. Two days ago he asked if he could read the original Winnie-the-Pooh book. I gave it to him, thinking he would balk at the volume of writing and the tiny print, but he launched into it and read the first two chapters out loud without stopping while I stared at him, open-mouthed. He’s been using the laptop to do his schoolwork (his choice, not mine!) and teaching his little brother and sister how to draw basic shapes on the Aquadraw mat on the floor.

So, it could be the new anti-seizure drug that has made this difference, or the chemo having positive effects, or the amount of faithful prayer he has received, but in the words of his brilliant consultant; “None of us are clever enough to know what’s caused this change, but none of us are stupid enough to try and find out, so we’ll all just keep doing exactly what we’re doing!” And although I am hopeful, I am also aware that with the many ups and downs we’ve had, this could be just another up period before another down one, but even so it is a very very VERY welcome relief from the hellishness that this autumn has been. So we will thank God, keep praying and enjoying being able to breathe again for a while.




Sunday, 6 November 2011

Bunches of Cuteness

Normally I don't get too gushy about the whole 'I've got a baby girl after four boys' thing, not being a girly girl myself, but yesterday, when I was finally able to do THIS twenty years after I used to do it on my little sister, I'll admit I was pretty darn excited :)



Wednesday, 2 November 2011

Rocky Road

So we brought Scooby home on 17th October after a month in hospital. Then we took him back on the 19th. Then home again on the 21st. Then back in on the 24th. And home again on the 26th. You get the idea - things are not looking good. His seizures are out of control. We've gone from two or three three minute seizures a day to up to twelve seizures a day that are mostly lasting between ten and twenty minutes. The nature of the seizures have changed - they are more 'shallow' than they used to be in that he is stretched out instead of curled up and he can still talk throughout them, but they go on for what feels like forever and we have to give him his rescue medicine to try and make them stop, but it doesn't seem to be effective. As always, he is baffling all the experts. Each time he goes back in, a new plan is formed, medicine doses go up, but almost as soon as he's home it all starts again. He's currently on seven different medicines, plus the rescue ones they give him through a canular whenever we have to take him in.

Again, I don't want to be writing about this. So I will write about a happier occasion - Rocky's birthday. My baby boy was four on Tuesday. I really can't get over it - he is such a three year old in every way that he really doesn't suit being four. I am much more reluctant for him to grow up than any of the others, even Baby (who, btw, needs a new blog name as she is now 20 months which is officially past the baby stage) whose growing up just excites me rather than making me sentimental.

He, however, was ready to be four and to receive the presents that came with it, so I had to go with the flow. Unfortunately, Scooby had gone back into hospital with Richard the day before so we had to go with plan B (we haven't ever just made plan A for anything for a vey very long time) which was to spread out the festivities over several locations.

First I took the four children to McDonalds for breakfast, as is customary, for a gooey breakfast.



He opened a couple of presents there.


 Isn't that the best look of anticipation ever?


 The Tongue of Concentration... 



Ah, googly eye cards. You gotta love 'em.

The he came home and had bonus time on the Wii (boys are such simple creatures to please).

I'd asked him what he wanted for a special birthday dinner and instead of asking for Chinese food or home made pizzas like the others would have done, he simply wanted scrambled eggs, much to my relief as even I can manage that one.



In the afternoon we went to the hospital with the rest of the presents and got a huge surprise! The night before, Scooby had been really upset that he wouldn't be at home for his brother's birthday, but I told him the party would happen wherever he was, so he needed to get busy planning some ideas for it. I was thinking he would come up with some simple ideas, like Simon Says and musical statues, but he had roped the hospital staff into turning his room into a birthday grotto! There were lights hanging from the ceiling, disco balls shining around the room, music playing, a birthday banner on the wall, two birthday cakes and a card and a present.





We had a great time - we played Pass the Parcel and musical statues, opened his presents and had a birthday feast in a side room. 



The party planner, very pleased with himself.





 *UPDATE* Since I wrote this, we've been home, back in again, and home again (I couldn't get the photos to upload to the internet from my phone at the hospital!). He was in for four days this time, as his seizures are getting worse. He's dosed up to the max so we could bring him home for a little while, but we know he'll be going back tomorrow or the day after. He's now had his second dose of chemo but it will be another couple of months to wait until we know if it's working or not. Until then, we have to use whatever we can to keep him going.