The Verling Family Week My family's weekly life, dealing with everyday events and my son's epilepsy

19Jul/140

Pulling Teeth and Loving Uncle Bill

Fred is downstairs watching a DVD. Lisa and Ruby have gone shopping leaving the men at home. After shopping the two are off to Dingle, the girls are gathering and Ruby needs to be chauffeured to Ali’s door. Lisa suggested that she get the bus at 6pm, a suggestion that was met with a look from Ruby that ironically could only be matched by her mother. Fred is happy with the peace; it has been a long week.

It has also been a great week. The man has been having lie-ins in the morning and has also managed to escape going to the library. Between me working and making a trip to Cork he kept silent, hoping against hope that I’d forgotten or the trips were over with for the summer. They are too important though, he needs to put in the extra hours, so come Monday afternoon it will be back to the desk. That’s a news story that I won’t be breaking until about 3pm Monday afternoon, best to keep the peace for the time being.

Once Fred gets something into his head it stays there. Lisa calls them his figaries and getting his back up about something planned is one of his biggest. If he’s looking forward to an event such as a trip to Dublin everything else will be forgotten, it will be tunnel vision until we get in the car. So much so that the school had to ask us not to tell Fred about any plans we make, as he won’t do school work from that day. I forgot this rule in his last week and was reprimanded at the end of year meeting.

When it’s something that Fred does not want to do he’ll just go on and on about not doing it. Such it would be with the library visit. I could almost guarantee that his last words of the day before going to sleep would be...

“I’m not going to that library Dad, I’m sick of it.”

To which I’d reply,

“Well if you don’t go there’ll be no breakfast in the morning,” or some equally pointless, idle and unenforceable threat.

I’m not sure what happened last night in the bedroom but Fred was back downstairs less than an hour after going to bed. The usual, I heard the door open and the angry steps on the stairs, plus the breath fuming out of Fred’s nose. Soon he was the door of the TV room, arms down by his side, fists clenched and nostrils going like one of Granddad Jimmy’s prize bulls...

“I’m sick of that Mummy,” was all he got out.

His mother wasn’t far behind him...“There’ll be no toy store tomorrow,”

Fred having planned a trip with the present he got from Uncle Bill.

“Oh ya?" was the reply to that threat.

First thing this morning though Fred was out of the bed and up to his mother. Peace was negotiated and toy store rights were reinstated. So not only is Fred now watching a DVD he’s also got a brand new Spiderman sitting beside him.

All worked out in the end.

Uncle Bill and Chrissie arrived on Wednesday for a two night stay. Fred was delighted to have his Uncle Bill down. So much so that I was pushed aside. When I came in from a visit of my own Fred was cuddled up to Uncle Bill on the couch, barely raising his head when I walked into the room. Later the three of us were heading to the off-licence to get wine for the dinner. Fred told me to stay; I wasn’t to come as it was just him and Uncle Bill. As I got into the car Fred tried to stop me but we compromised with him sitting in the front. In town we had to park up so Bill could go to the cash point. Walking down the street Fred held Bill’s hand, not even looking at me, just enough to ensure I was a step behind. When we got to the off-licence I went to hold Fred’s hand but was pushed away. Very upsetting for the man who’s usually at the centre of everything Fred does. In the off-licence Fred was sticking to Bill like glue. In truth it was lovely to see, every boy should have an Uncle to idolise.

Over the next couple of days Fred was in heaven. The family minus me went for a drive around North Kerry, stopping in Listowel for lunch. Fred of course got his favourite chowder and chips which he demolished. It was a very full boy who came home to me later in the afternoon. Not so full though that he wasn’t up for a trip to the beach. I was allowed go but had to sit in the back again. We went to a quiet beach with lots of shells and rocks. It really was a bit of heaven. Fred dug around in a fresh stream, collecting shells and rocks while the two adults sat back in the sun, keeping an eye on the man. We spent about an hour there, all three of us getting nicely tired in the afternoon heat. Once it was time to go I offered Fred a piggy-back to the car and he gladly hopped up on my poor back. Dad was useful for something again. Just as we got close to the car Fred put his head to me ear and said, “I love you Daddy.” All hurt instantly forgotten.

Ruby had come home in the meantime so it was a full house sitting down for dinner that evening. A precious moment in our great summer. Fred sat up next to Uncle Bill. At one stage I watched him and he was copying every movement that Bill was making. Copying him eating and drinking, cutting his meat or buttering his bread. He’s a funny boy is our Fred.

When Bill and Chrissie left on Friday morning the upset was lessened by the present of spending money for the toy store. In a way it made up for the tooth loss that Fred had forgotten about on the day Bill arrived.

I was upstairs and came down to make Fred’s lunch. He wasn’t in the front room or kitchen and when I called him the answer “one minute,” came from the bathroom. That is usually a sign that he’s up to something, usually nothing good. I knocked on the door and Fred opened it a small bit. He was holding a blood stained cloth to his mouth. “What’s going on?” I asked, pushing the door in a bit more. Fred stepped back to allow me in fully. The sink was covered in blood and there were a couple of cotton buds full of blood lying by the taps.

“Ah my tooth was hurting me so I took it out,” Fred said through the cloth.

He had been complaining about a sore tooth over breakfast and obviously decided to take matters into his own hand. The tooth itself was on the sink, a baby tooth but a fair sized one, not unlike the fair sized hole in Fred’s gums.

“Now I can get money from the tooth fairy for the toy shop,” Fred said.

“You’re a bit old for the tooth fairy now,” I said, cleaning up the blood.

Within an hour he was back out playing and forgot completely about the hole in his gums. The tooth fairy wasn’t mentioned again but then Uncle Bill gave him much more than the tooth fairy ever did.

Tough out is our Fred but he’s also the most gentle, loving boy you’ll ever meet.

 

 

 

 

 

 

 

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13Jul/140

A Grand Day Out

This week Fred and I were home alone.  These are the times I love, the men alone doing their own thing but also in the back of my mind is the fear of something happening. Thankfully that fear has rescinded hugely in the last year but it’s always there, somewhere. It’s not as if I couldn’t cope, it’s more the missing of the reassurance and calmness Lisa has when Fred is in seizure mode.   Also when one of us is away you want them to relax, enjoy their time and not to be constantly worrying about Fred at home.

The important thing for Fred is that he has a good time and so with the girls leaving for Dublin at 6am on Thursday, the two of us had a lie-in until nearly 10am. A lovely start to a lovely day. The two of us had a leisurely breakfast and afterwards Fred played with his toys while I went to my office. I’d decided that if the girls were off enjoying themselves the boys could too. With this in mind I promised Fred we’d go out to lunch.

Something he rarely gets to do.

At about half one the two of us set off. We drove across town, parked up from the bank and did some bill paying. Coming out from the bank I decided we’d walk to The Grand Hotel where I knew they did good chowder, Fred’s favourite. It was lovely to walk through town without a bother, saying hello to people and being part of the lunchtime bustle. In the hotel, a lovely old one in the centre of Tralee, Fred picked a good table and we sat down. The waitress came over to give us a menu and Fred put up his hand as if to stop her...

“Ah, excuse me,” he said, “Can I have some fish soup and chips?”

She looked at me; I nodded but whispered for them to be small portions. She wrote it all down.

“And some mayonnaise,” Fred said as she wrote, adding a “please” when she looked at him.

Soon our lunches came and we both tucked in. Though I was worried and was giving him the odd swipe of the magnet, it really was a lovely lunch. People were coming over to say hello, Fred telling them what he was having, if he was distracted long enough to talk. We spent about an hour there, eating and chatting without a care in the world. Afterwards we walked back across town, back to our car, Fred full of ‘fish soup’ and me just delighted everything had gone so well.

Then it was time for the library.

At Fred’s end of year meeting with the teachers they stressed the importance of keeping up his schoolwork, keeping his eye in with reading especially. Knowing that telling Fred he had to do homework during his holidays wouldn’t be easy I came up with the idea of rolling it in with library trips. Fred likes going there and the change in location from home might just take the ‘home’ out of ‘homework.’ Of course I’ve had to make concessions such as first the library and then a trip to the beach or as on Thursday first lunch then the library. There was a bit of trust on my behalf with that one.

The library trips have proved successful though. He’s knuckled down to the work, still capable of drifting off but he’s being doing good work. Teaching Fred requires patience, he can forget something as soon as he learns it but the concentrated time spent in the library tends to keep him focused. Importantly too I have to keep my patience, not easy at times but we’ve got there most days.  Tuesday was a tough day, Fred wasn’t recognising words we’d learnt on Monday and I think the librarian must have picked up on my breaking  patience...she brought over a card game to help with word recognition. When leaving I handed it back but she told me it was ours to keep, which was a lovely gesture.

After Thursday’s trip we went home. Both of us sleepy from the work and the big lunch. Fred deserved his lying out on the couch watching a movie. We actually did two hours of reading and word recognition so he’d put in a full shift. We got a book with a DVD from the library too, on art projects, so Fred read that while watching the DVD later.

After reading work earlier in the week we’d gone to the beach. Another place where my heart is in my mouth that something will happen but that is another fear on which I have to work. Denying Fred something out of our own fears has to stop. Lisa is way better at doing this than me. Fred had badgered his Mum into buying surfing shorts, flip-flops and a sun hat on Monday, so he had all the gear.

The two of us had actually gone to the beach on Sunday. I promised that if he could allow me to watch the tennis I’d take him later. So after Federer had broken my heart once again the two of us set off. My courage wasn’t enough to go all the ways down the beach but Fred paddled in the river, kicking and splashing his way around. On Monday I was brave enough to go to the water’s edge and we repeated this on Tuesday. Watching Fred paddling up and down through the gentle waves was lovely. He so loves the beach, as do I, and seeing him do what any normal kid does is always great. On Tuesday evening he said he was going to go swimming; now at that I had to draw the line.

On Monday evening Fred went up to change out of his beach gear when we got home. After dinner I went up to the room. There on the wardrobe door Fred had hung his new shorts and sun hat. Neatly placed by the wardrobe were his flip-flops. All ready for the next day but also tidied away with pride; his favourite clothes for his favourite place.

Compared to last week Fred has had a return to normality these last few days.

We’ve gone back to the beach, had fish soup in a restaurant and even done some homework.

The girls came back exhausted Friday evening, just in time for me to go off to Cobh for the night. Needless to say I came back Saturday even more exhausted and today is going to be a traditional day of rest for us.

Back to the library tomorrow for Fred.

So will begin another week of fun...

 

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6Jul/140

A Visit From The Past

On Monday Fred and I drove Ruby to Dingle. It was Ali’s birthday and the girls were having a party. On the way out we picked up Ruby’s friend Ella and Fred was happy to be escorting the girls. He was quiet though, usually he’s full of chat and Ruby will inevitably tell him to turn around, to leave them alone. Typical older sister, younger brother despair.

After dropping the girls the two of us drove over the Conor Pass on one of those warms sticky days that summer is all about. As we drove back along the straight road to Tralee Fred was still quiet. Again I asked him why he was so and he answered that he was looking at things out the window. The things he began to recite and after a long list he went back to looking. It worried me that he was so sluggish, not exactly himself though he claimed all was ok.

About 5pm we got home and Fred wanted to go for a walk around the estate. I gave him a swipe of the magnet and off he went, looking for something to do. After a few minutes I went to check on him, he was doing fine, balancing on the kerbstone and he waved over when he saw me. It’s such a feature of the little man’s life having his parents constantly checking in him, that he’s became used to it. I went back inside to start dinner.

A couple of minutes later I saw Fred running across the courtyard to the house, a worried look on his face. By the time I got to the door he was bursting through...

“Dad, I got the confusion, bad confusion,” he said when he saw me.

It must have been bad for him to try and make it home so quickly. He took his medicines, I swiped the magnet and we settled down on the couch. He was jerking but the constant swiping seemed to ease it. Lisa came home shortly afterwards and took over as I had work to finish in my office upstairs. When I came down about an hour later Fred had had a seizure, the usual tonic clonic and was asleep in Lisa’s arms. It had only been six days, the shortest gap in a while, a long while.

He didn’t stay asleep for long as is the normal these days but when he woke he wasn’t hungry. Lisa got him back to sleep again but he woke about an hour later. This time he picked at some dinner, not much and fell into his mother’s arms once more. Then he had another seizure. This was heartbreaking for us, a short seizure free gap and now a second one; this was the sort of day we hoped was behind us. Fred recovered quickly, enough to start watching a DVD but about 9.30pm he went up to bed with Lisa.

I was watching the World Cup and at a break before extra time I went up to check on them. As I got to the bedroom door I heard Lisa tell Fred that Daddy was downstairs and would be up soon. Back down I went and turned off everything, Fred’s sleep was the priority that night.

In bed Fred cuddled up to me and Lisa said to call if anything happened. The third seizure broke through about half an hour later and Lisa took over again. This really was like old times. Fred had three more before 1am when Lisa got his morning medicines into him. Five hours earlier than usual but in these times we try anything. It worked and Fred fell into his deep sleep.

Of course Fred managed another one the next morning, just before he woke. He didn’t want to stay in bed though and came downstairs a bit later to take up residence on the couch. There was a cloud over our house that day, we were worried that the cluster wasn’t going to stop and we were very down that Fred was going through this all over again.

The progress he’s made over the last few months has all been down to keeping the seizures at bay. The school and everyone else has being keeping Freddie moving forward, gaining from the freedom he was enjoying. Now in one day it felt like everything was being taken away again, as if the good times were only a tease, epilepsy playing with us again.  Watching Fred sleep his way through a day once more, lifting his head just to look around or waking from time to time to watch simple TV programs was heart breaking. Those programs which he’d stopped watching, ones that aren’t the least bit taxing, and the ones we hoped we’d never see again.  It was all back with a bang. Even Lisa had a Stesolid on hand, just in case; a drug we haven’t had to use in months.

Ruby came home and Lisa went out for a walk. The house was returning to normal. As I was pottering around out the back, getting a few jobs done before more football I heard a crash in the kitchen. Looking around I saw Fred’s legs sticking out from behind the sideboard. He must have known I was out the back and was following to see what was happening. The seizure must have caught him totally off guard, just as he was coming into the kitchen. Ruby and I picked him up and got him back to the couch, again just like old times.

That last one was epilepsy saying goodbye, the last kick as it left the house. Fred woke not long afterwards and watched a DVD before going to bed. The next day we had a visit from his Aunty Ella and Dan but Fred wasn’t interested, he was zonked from two days of activity. He had some egg and toast around midday which was the first food he’d eaten since Monday evening. Progress in the circumstances.

So that was Fred’s week. Only yesterday was he really anyway like the Fred of previous weeks. The two of us went to the library in the morning, part of a plan we’d devised to keep Fred’s reading progressing. He read well but nothing like he’d been doing with Ms O’Se the previous week. The idea of the library is the choice of books and an environment where reading is what everyone is doing. We’ll try it again though, yesterday was a partial success.

Why did he have such a major setback? Well Fred never does things by halves that much we do know. Was it that for some reason his meds failed, the levels in his system dropped, leaving a cluster through? We can only hope that it was a temporary setback, that the VNS will take over again and the great gains of recent times weren’t just a flash in the pan.

Only time will tell. For now we all have to get our trust back, trust to leave him wander alone again, trust to do the things that were becoming normal for us to do. Yesterday Lisa took Fred shopping with her and all went fine. Today Fred wants to go paddling, weather permitting we’ll give it a try.

Our hearts will be in our mouths but we’ll give it that try.

 

 

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29Jun/140

End of Year

Well Fred’s first full year at Blennerville School has come to an end. The summer holidays finally arrived on Friday and Fred now has the long, hot months ahead of him to recharge his batteries. Leaving day on Friday was very emotional for us, the advancements of this academic year have been unbelievable and are all due to that wonderful team of people.

On Monday we had Fred’s school report. Ms O’Connor and Ms O’Se thought it best for us to meet rather than send an impersonal sheet in the post. Lisa and I headed over first thing and we sat at the desk in Ms O’Se’s classroom like guilty school kids. The report didn’t surprise us; Fred’s advancements were highlighted as were his weaknesses. There is much work to be done over the summer, reading and writing mainly but the emphasis was on keeping the momentum going. How this will sit with Fred is another thing, homework during holidays is much worse than homework during school term. Somehow we’ll have to get around to it but first he might get a week off.

In true Fred style he wasn’t about to sign off from school without a bit of drama. We got the phone call about 2pm on Tuesday, just eight days from his last seizure. Again the school were out at the playing field and Fred had keeled over after running a race. The heat and activities are just too much for him but in time he will adjust to it all. It has been too long since he was able to enjoy such fun with other kids and we can’t stop him now just out of fear. There have been other days when he’s come through it ok but on Tuesday the combination of heat and running was just too much.

When Lisa and I got to the playing field Fred was cuddled up to Denise in the goals. The other kids were still doing their races and not in a drama over Fred. Just how we want it, the epilepsy is part of Fred but it doesn’t define him. No, Fred is a wonderful, loving, full of fun and popular boy, something Ms O’Connor was really emphasising at our meeting. “A pleasure to have in the class,” was how she put it.

We bundled him into the car and got Fred home in a couple of minutes. On the couch he slept for the rest of the afternoon, waking for toilet breaks and a glass of water. Even when Otto arrived on his odyssey from Derry Fred slept on, only waking at 8pm looking for dinner. Once again he didn’t cluster, we didn’t have to intervene and the next day he was as right as rain. The short gap was a disappointment but we think that was due to the heat and running around. This we don’t know for certain but we’re enjoying the improvements for now.

Fred was back to school Wednesday, a bit shy but was given the usual welcome from all the kids. No fuss, no drama, just how it should be. When I collected him afterwards the girls were giving him big goodbyes and he was full of fun from yet another great day at school.

That night I went to Dingle on a sleepover. Judy was over from Australia, Conor was down from Dublin, Otto down from Derry and Jenny from Mayo. A reunion of sorts and it was at least ten years since we’d all been together, if not longer. Fred didn’t want me to go and I had to lie that I wouldn’t be gone for long. It was actually very hard for me, I really missed the little man, the fact I wasn’t worrying about him probably made me miss him even more. Previously the worry would override all other emotions but on Wednesday night not going through our usual routines was a bit odd. Normal stuff for a parent really and couldn’t let it overshadow my night away. Not that the company I was in would let it and we had a ball.

By the time I got back on Thursday morning Fred had gone to school. It was a long morning waiting for 2.30pm to come around, waiting to see my man again. Lisa and Ruby headed off to Waterford for Granddad Jimmy’s birthday barbecue about 2pm, leaving me alone. At 2.15 I headed off to sit outside the school, waiting for 2.30pm to come around. When Fred eventually did appear in playground I was struck by how grown-up he looked. Maybe it was the short time away or maybe it was that I was waiting for him but out walked a confident 11 year old boy, one that I hadn’t noticed fully before. He nearly knocked me over with the hugging and kept saying how much he missed me. It really was a great welcome home.

Back in the house Fred hardly noticed that Mum and Ruby were gone. The weather had broken, the rain was lashing down and Fred wanted to do nothing, just lie out on the couch watching a movie. This suited the tired me perfectly. I could read and doze while Fred did his thing. Even when Ms O’Se called over with some presents Fred wasn’t too disturbed, gladly chatting to her and thanking her for everything. That evening the two of us had dinner on the sitting room floor, watching TV, cuddled up under a blanket.

Bliss for Fred and Dad.

On Friday Lisa and I headed over to the school with presents for the three teachers, “the women who care for me,” as Fred calls them. At midday they whole school trooped out, the 6th class girls crying at their last day, the boys running for the gate shouting “freedom.” Lisa and I had emotional thank-yous with Ms O’Connor, Denise and Terry, the principal. Hugs and kisses, tears and goodbyes while Fred sat in the car waiting. The school has done so much, all in their stride, and it is beyond words to express how much they mean to us.  Fred’s improvement is the tangible proof of how wonderful Blennerville School has been it will be only in future years that it will all be put in perspective. For now all we can say is thank you Blennerville, thank you so very much.

That afternoon Fred had a special visitor, one that I kept secret from him. Luckily Conor arrived early in the day so Fred’s curiosity over the ‘secret visitor’ was quickly satisfied. Fred was delighted to have Conor in our home, as were we all. Fred took him upstairs, into all the bedrooms, all the ‘attics’ and then outside. We had a great lunch, much chat and laughter. Fred loved it having Conor with him and it was a very sad man who said goodbye a few hours later. We’ve been promised a return visit, a sleepover by Conor and Cathy which will be wonderful for us all.

To cheer-up the man and stop him wondering when Conor would be back, I told him we were having another surprise visitor on Saturday. As Fred had been asleep he’d missed Otto on the way through on Tuesday. So when he arrived dinner time Saturday Fred was only too happy to take him on another house tour. Otto stayed for dinner, Fred sitting beside him at the table, listening to all that was going on. Much to Fred’s delight Otto stayed overnight so he had him for breakfast again in the morning. I don’t know if Fred remembered meeting Otto before but he took to him immediately and was sad when he left.

It’s been a great week, Tuesday’s hiccup besides and a great start to Fred’s summer holidays.

Hopefully they will be busy holidays, full of fun, laughter and visitors.

 

 

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22Jun/140

The Five Second Rule

It’s an odd one that I find myself writing of Freddie having a seizure and finding so much good in it. Not the fact that he had one; a call from school just as I was heading to collect him Tuesday afternoon confirmed what we guessed on the first ring.  No the good news lies in how it developed.

Lisa and I got to the school to find Fred in his chair, in the shade of a tree, just coming around. The ‘postictal stage’ as it is medically known. How many times did we hear hospital staff use that phase? His eyes were half-open and he seemed to recognise us. This in itself was something new; usually Fred is unconscious for a while afterwards. Denise and Rose were standing over him, wiping his face and keeping him cool. Fred had got a bad attack of the jitters outside, and while they got him in his chair and had swiped him continuously, the seizure had broken though. The kids were playing around him, oblivious almost, which was great to see.

We bundled Fred into the car and drove home. At the house the man was able to walk in, dazed and confused but he made it to the couch. Poor Ruby had to be disturbed from her lying out but then she still had study to do for her final exam Tuesday. Lisa cuddled up beside Fred and he slept for the afternoon.

That was it.

No more seizures, just rest and bathroom breaks.

Fred was awake fully for dinner at six. After dinner he asked “when’s dinner?” as that meal was only lunch.

Nothing wrong there.

This was the first time in five years, I think, that Fred has gone so long seizure free, seventeen days, and hasn’t clustered when one did strike. On top of that he recovered so quickly, so much so that by Monday evening I’d forgotten the drama of lunchtime at school.

On Tuesday morning Fred could have gone back to school but we kept him home.

So many positives that Lisa and I were scared to discuss the events of Monday, in case we jinxed matters.

It must be the VNS; nothing else has changed in the last while but we’ll have to see and we won’t get our hopes up too much until we’ve had a few more days like Monday.

On Wednesday they had Sports Day at school. It was very hot and being the worriers that we are it was decided that Fred would be collected from the field at 11am, because of the heat. The heat of the day can be a trigger and it was very hot during the week. Fred actually didn’t want to go to school that morning but I persuaded him to go, with the sweetener of coming home early.

That was a mistake.

From the moment I dropped him he was telling Denise that he was going home soon, he couldn’t or wouldn’t concentrate on his schoolwork and I don’t think Ms O’Connor was too happy with me. When Lisa went to the sports field at 11am Fred was busy kicking ball and running races but he was happy to go home. The kids were unhappy that Truly Scrumptious hadn’t brought cream buns...

When I collected Fred from school on Thursday afternoon he hobbled across the yard. Denise behind him was trying not to laugh. During both breaks Fred had been playing with the older girls, ignoring Denise’s instructions to slow down during tag. While looking over his shoulder to check on Denise, he fell over another boy, hurting his leg. Another time, looking around again to check that Denise wasn’t too close, he bumped into the wall, hurting the other leg. Playing to the gallery Fred had hobbled his way through the rest of school, not exactly sure which injury to favour the most. Like a WW1 veteran with his pack on his back, he limped wearily to the car, making sure he moaned the requisite amount of times. Back home he limped into the kitchen, telling his mother that he was too sore for Ms O’Se.

That didn’t happen. Ms O’Se arrived and Fred was put to work, much to his annoyance. Again he blamed his mother but Ms O’Se wasn’t having any of it. In the end the little man did his homework and even apologised for giving his mother gyp...

It’s a strange darkness that seems to fall over Fred when he doesn’t want to do something. Part of it is sheer pigheadedness, a stubborn streak that his sister also possesses. The other part though is as if his brain switches off; he doesn’t listen, won’t co-operate and would prefer to be comatose, spread-eagled on the ground or on the sofa, eyes rolled up, completely unresponsive.  No amount of arguing, cajoling, threats, dragging or in the end shouting will get him to respond. It’s really upsetting as Fred can go into this state on the slightest whim and no amount of sendings to his room seems to prevent further events.

To try counteracting this, cut it off at the pass as it were, I’ve introduced a five second rule when we see Fred sliding into this state.

I threaten with:

“I’ll count to five and if you don’t go wash your teeth you’ll spend the day in bed.”

Sounds silly now but such a situation can develop over something fairly trivial and escalate to a whole day ruined by Fred disappearing into his comatose state.

Maybe it’s Fred thinking that by mimicking his seizure status he’ll get his own way. But how does he know what that status is?

The five second rule has worked to an extent, stopping a lot of more recent fights but I feel terrible issuing the threat and worse when I have to actually follow through and frog march him upstairs. Usually half an hour in the cooler will do the trick and a repentant Fred will call me up to plead his case.

“I’m good now,” he’ll say, brown eyes looking over at me, melting any hard heartedness I’ve left in me.

It’s probably only a temporary situation borne more out of frustration at not having the freedom and control of his life that Fred sees in other kids.

We just hope it passes soon.

With more days like last Monday Fred will be well on the way to getting some sort of life back.

As will we all.

 

 

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15Jun/140

You’re Truly Scrumptious

Fred is downstairs making chocolate biscuit cake with his mother. We’re going to the school end of year barbecue this afternoon and everyone is bringing something. Last night Lisa made about a thousand mini meringues which they are going to dribble with chocolate before dropping them to the party. With the cake and meringues the kids are going to crawl home from the barbecue, if the parents don’t eat them all first. Hopefully they’ll remember the Verlings for more than just Fred’s epilepsy when we eventually leave Blennerville, raised cholesterol being one alternative.

The man is on probation though. This week he reverted to the silly phase of not doing what he’s asked. Part of this is his strong-minded attitude, which we wouldn’t change for the world. Ruby was the same at his age and still is now, except now she disdains of her parents and she’s the one telling us to behave. With Fred though he just walks away, won’t talk and pretends to be unable to hear.  It’s very frustrating when all you want him to do is come in for dinner and he ignores you. Doubly so for his mother who isn’t used to being ignored, though I can still hear her saying “That child!” when infuriated by Ruby doing the ignoring a few years back.  Unfortunately with Freddie we have to be able to trust him, to get him to do as asked because running away or not responding can be dangerous. How many times in the past have we had to pick him off the ground when he’s gone off in a strop? The image of him dropping ten feet off a ditch into a deep stream a few years ago will haunt me forever. That too was when he was refusing to get in the car and ran off instead.

So it with this fear in our heads and annoyance at his childish behaviour that we’ve been coming down hard on Fred this week. A few times he’s been sent to bed early and the threat of ‘never being allowed out again’ has been issued too. Even this morning breakfast was going to Muttley until he agreed to put King Kong away. It must be very difficult for Fred, he wants his independence but we can’t give it to him until we can trust in him fully. Having said that, last night Fred went for a walk but came home as he’d gotten ‘a fright’ when the confusion descended on him. That’s responsibility, he knew that all wasn’t ok and he came home. A few swipes of the magnet and he was as right as rain...

“Where did you get the confusion?” asked Lisa.

“Over by the trees.”

“Which trees?”

“The tall ones.”

“What tall ones?”

“You know, the old ones.”

Not ‘the trees behind Billy’s house,' no, that would be too simple and not half descriptive enough for Fred. May that never change...

Again this week Fred hasn’t been sleeping or at least not going to sleep on time. On Tuesday we had another lights on, door slamming and Fred appearing at the end of the stairs. Wednesday night though he slipped back into a pattern and has been drifting off by ten o’clock, with no fighting. Just as well as the World Cup began on Thursday night and there is a lot of football to watched, hopefully in peace.

On Tuesday Fred went playing hurling with his class. Denise told me on Monday that she’d be with him and would keep a close eye. When I went to collect Fred after school she was full of how good Fred had been and how he looked the part with his helmet, flipping the ball off the ground like Christy Ring in his prime.  Christy Ring was my reference, Denise being young enough to be the maestro’s granddaughter. Now that we are getting some control over Fred’s epilepsy and he’s becoming more aware of the confusion, days of playing Hurling or other sports may come back.

Not that Fred is without his interests. On Monday he wanted to take his shark book to school for ‘show and tell.’ Not that Ms O’Connor was doing this; it was something Fred picked up from an American TV show. In went the book and when Fred got to school he dropped his bag quickly on the table and went looking for it.

“I brought something,” I heard him say as I left.

Afterwards Ms O’Connor said he was brilliant. Fred gave an impromptu, uninterrupted talk to the class on sharks and all the different species. I don’t know if he went into a scene by scene breakdown of Jaws but they’d probably still be there if he had...

School is really working out for him. On Thursday Ruby and I were driving past at lunchtime when we slowed to have a look. There was Fred in full conversation with two girls, walking around the side of the building, Denise a few paces behind. It was lovely to see. Ms O’Connor told us that now they are wearing polo shirts due to the hot weather, Fred is pulling down his open top and showing the girls his surgery scar. That will do it every time.

On Friday the class went on their annual walk, along the mountain and down onto Derrymore beach, a good three hours of trekking. Unfortunately it was too far off the road for Fred to go but we met them all on the beach at lunchtime. The welcome Fred got was lovely. As I walked down the path I could hear the word go around “here’s Freddie,” and they all dropped what they were doing to talk with the man. Fred was straight into the stream and a lovely girl called Molly came over to give him her bucket and spade. Lisa was the big hit though; she had made cream buns and chocolate chip cookies which she was doling out like Truly Scrumptious from Chitty Chitty Bang Bang.  The kids swarmed around her and the buns were gone in double quick time. A few boys were boasting that they’d gotten two, their faces covered in cream and chocolate. Fred went home on the bus with the rest of the kids, Denise taking the magnet just in case.

If only all school days could be like Friday, I’d go back myself.

Now it’s time to go to the barbecue. Last year it didn’t occur to us to go; now we’re looking forward to the afternoon.

No doubt Truly Scrumptious will be a big hit.

Not just with the kids either.

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8Jun/140

Who Lives in Pineapple Under the Sea?

There is an episode of SpongeBob SquarePants where the writers hit a peak of creativity. SpongeBob and Patrick hide out in a box and use their imaginations to create all sorts of scenes. The much maligned neighbour, Squidward, doesn’t get imagination and doesn’t understand from where the boys are getting their fun. It’s a scene I’m reminded of whenever I watch Fred playing with his action figures such as Iron Man, Wolverine, Batman and many different Godzilla characters.

As a kid of eleven maybe he should be more into hanging around, getting ready for the teenage years of being sullen. There may be a grain of truth here as his years out of school have lead to him being behind what other kids are doing. I know Jaden has no time for them, preferring to be on his phone or tablet. But watching Fred build complex story lines from a couple of figures, battles that go on for ages and conversations of which a Hollywood scriptwriter would be proud, assures me he is on the right track.

During the week, when we were on our way to school, Fred found two old dinosaurs figures on the floor of the car. From the house to the school gate they battled, chatted and fought to the bitter end,  as much to my entertainment as Fred’s. Great imagination. The recent school fundraising initiative also confirmed Fred’s imagination.

They20140604_195101 had a clever idea of the children to do one piece of artwork, the subject to be of their own choice. The finished paintings were professionally framed and priced at €10.00 each. An exhibition of the entire school’s work was held on Tuesday night and I went down not knowing what to ex20140604_194930pect. It was beautiful.

The exhibition was laid out in a classroom, all 130 pieces of framed work, mixing age groups and classes on freestanding display units. There were lots of dogs, other animals, mountains, skies, cars and country scenes. Finally I found Fred’s, three musical instruments on a strong red background. A flute, a violin and a trumpet; they may not have been drawn as well as some other works but from what I could see it was the only one of its type.Needless to say it brought a tear to my eye.

Every parent went along with the fundraising bit and the work came home with the children the next day. When paying, I asked the curator what the take up was like... “Nearly 100%” he said proudly.

Fred came home Wednesday showing off his framed work, which now hangs proudly in the front room.

Not that the week hasn’t been without any lows. Fred was fighting most nights with his mother over going to bed. The long evenings have him confused as to what time it is, plus he’s finding the brightness difficult when trying to sleep. When I was a kid it was the same. Going to bed at 8.30pm when it was still light outside was a tough one. We lived in an old house so the shutters would be closed and the heavy, lined blackout curtains drawn. Still I’d be awake when the others would be going to bed and I remember asking my sister Ella if it was still bright outside, which it would be, much to my amazement.  Fred has inherited the inability to drift off easily from me, much to his mother’s annoyance. Behind this lies the worry of Fred not getting a good night’s rest as sleep deprivation is a key epilepsy trigger. This has been evident since going back to school on Wednesday.

Fred was off school Monday and Tuesday and the Friday before, part of giving the kids a break in the sun. Fred loved his time but got into bad habits of not sleeping, not that he needed much encouragement. On Tuesday morning he was having breakfast when his right hand shot into an involuntary jerk spilling orange juice across the table. “I got a fright,” he said, a look of fear on his face, not understanding the why. Lisa took him inside and much to our relief nothing else happened. Other little bits happened such as small, five second frontal lobe seizures as he was, eventually, going to sleep. Whether these are all connected we don’t know but Denise was on high alert at school, swiping him continuously. Maybe it’s a new progression in the VNS adjustment, maybe because his last clusters were so mild that his brain didn’t right itself, who knows. Funnily enough he didn’t get any confusion, the portent of seizure activity and had a great week in every other way.

Fred has been getting himself up in the morning, following me down after a few minutes and helping with the breakfast or emptying the dishwasher. His schoolwork has been praised and he’s still playing with the older girls. On Friday evening he and I went to collect Ruby after her Maths exam, the two of us laughing all the way to Dingle. All great fun and just what the doctor ordered, literally in Fred’s case.

Lisa was away Friday, supporting her wonderful sister, Clare, who was doing a fundraising ‘Let’s Dance’ in Kilkenny. Ruby, Fred and I had dinner and settled in the front room on a cold, wet evening. We had received an invitation from a new arrival on the estate, just drinks from 7pm to 9pm. At 7.30pm I went off, leaving Ruby in charge of Fred. As I walked across the green the though struck that here I was off on my own and Lisa was in Kilkenny, while the kids were home alone. A first. Not that I was more than five minutes away. I was planning to just have a glass and head back at 8pm. But I relaxed, got to know people from our estate and even had a glass followed by a bottle of beer. At 9pm I headed home, Fred looked up momentarily to say hello but outside of that I doubt if I was missed.

Just a great, normal week but one that would have been beyond our imagination not that long ago.

Now it’s not anymore.

SpongeBob would approve.

 

 

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1Jun/140

Lessons Learnt

As I waited for Fred outside his school gate on Tuesday it occurred to me how normal his life has become. There he was coming out with Denise and all the other kids plus this week Fred went up to the full day at school, 2.30pm, without a bother.  His parents are able to relax; Ed Galvin had remarked earlier how nice it was to sit with Lisa and me in our kitchen, just like normal people do. Other parents nodded and said hello, some of the grandparents were talking about their time at the same school over sixty years ago.

Fred walked out at his own pace, Denise just beside him. As they passed a group of girls, I guess 6th classers, they broke into a chorus of “Hi Freddie.” Fred feigned not to hear them; looking at me over the wall but they kept going until he eventually gave them a “hello.” They continued with a “see you tomorrow.” Fred looked at me with a happy, chuffed smile mixed with a bit of embarrassment but definitely more chuffed than embarrassed.

Denise told me that at break time Fred had gone off on his own to talk with the older girls...

“I think he has an eye for the older woman,” she laughed, winking at me.

“They’re just my friends,” protested Fred.

Turns out at both break times he’d searched them out and had even coaxed the girls into a game of hide and seek. Denise, always in attendance, was told to stay away...

“I have to find those girls,” Fred had said rushing away from Denise at lunchtime.

Poor Denise; pushed to the kerb when the other girls take interest. She’ll always have a place in our hearts though, taking our boy when we were in a fragile state and giving us the confidence, the freedoms, we enjoy today. She really has been a key player in the improvements of the last while, something Lisa and I will never forget.

Ms O’Se, Olivia, has been another key player this year. With her determination that Fred isn’t allowed to slack or find excuses she has pushed him on. Each afternoon Olivia comes around and Fred is handed over. He protests a lot, especially on sunny days, but normally he gets down to the work. Olivia doesn’t allow him pretend to have confusion or tiredness and many is the time I’ve passed the kitchen to hear...

“Come on now Freddie, you’re not tired, just one more.”

Fred now knows he can’t shirk with Olivia and it’s easier to do the work than not. Even on Friday, a day off from school, Olivia came around, much to Fred’s annoyance.  Lying, I appeased him by saying that Olivia would only be around for a “short time.” Fred’s favourite length of school work. Actually Olivia stayed for ninety minutes, a half hour longer than usual without the man noticing.

This week, after much work, Olivia had a breakthrough. Fred has been good at his reading and usually if he gets stuck, he’ll look at an accompanying picture to help find the word. All part of Fred being very visual as anybody who has spent time with him would notice. Fred will describe an object instead of using its name, as his brain works that way. For instance the kids on the estate have go-karts for zooming around the place, Santa presents this year. Fred calls them the car-sit-down-bikes, the laptop is the-big-black-computer and all his Godzillas are named by their shape or sizes....”you know the circle Godzilla with the spiky back and the big teeth” I’ll be told to get from the cupboard of toys.

The problem has been if Fred is shown a word on his own he won’t recognise it. This has driven Lisa and I daft over the years. Fred will read a book without a problem but once shown a word-card with a word from the story he’ll look blankly at it. Olivia has stuck at it and this week I was called in when I came home...

“Watch this Dad,” Fred said proudly, taking a load of single word cards from Olivia’s case.

With Olivia holding them up Fred shot through the words, random words from anywhere in the pack. If he got stuck he’d look at the word and sound his way through it. This really is a major breakthrough and a compliment to Olivia’s doggedness. Not that she has been immune to his charms and I think he’s managed to soften her approach over the last few months. I hear talk of dinosaurs and Godzillas coming from the kitchen from time to time. One day recently Olivia arrived just as Fred was putting on his t-shirt. He stopped to show her his scars, proudly running his fingers over where “the doctor cut me with his knife,” as he put it. Not everyone is shown them.

Fred had a bit of confusion at school during the week but Denise just swiped the magnet and all was ok. Now that he’s aware of it, and Denise is able to cope, school life doesn’t need to be interrupted too much. The day of confusion was the one after Fred wouldn’t go to sleep the night before...

Monday evening I was watching a program and about 11.30pm I heard some raised voices. Pausing the TV, I was just about to get up when the light on the stairs came on...

“I’m sick of you.”

“No I’m sick of you.”

“Get down those stairs to your father!”

“Oh ya?”

“Yes, now!”

There was Fred standing at the foot of the stairs, his mother a few steps above him. Having gone to bed at 9.00pm Fred hadn’t gone asleep as planned, resulting in the fight with his mother. Sleep is important to his condition, especially regular sleep patterns. I quickly turned off everything and took him up, his mother glaring at us both. As Fred had been waiting for me, I was implicated too, guilt by association. The two of us went up and he was asleep in minutes, cuddled up to me while I read. When Denise told me of the confusion the next day it was a perfect example of how he needed to sleep and Fred nodded in agreement. Every night since he’s gone up on time and is in a deep sleep by the time I arrive, as is his mother.

Friday was a scorcher and Fred was out playing all morning. Jaden came over at gone 3pm, a bit later than usual but the two set off up the green to play. From my office I heard screaming and Jaden came around the corner, Freddie running behind him. Jaden had a chain which Freddie was chasing. The screaming, the excitement and the running had me worried but I tried not to be. They continued and I did get worried, running and screaming in excitement has had Fred on the ground previously.

Outside I found Lisa trying to get Fred to stop. He did but then that look of confusion was in his eyes and he cuddled close into Lisa. The magnet was back in the house and we struggled back over home. Fred began to jerk as he walked, he looked very scared.

Lisa got him inside and onto the couch, he was jerking quite badly at this stage. Jaden stayed outside. I found the magnet and Lisa began to swipe. We got his medicines into him but he was jerking uncontrollably, his eyes full of fear. His knuckles were white as he tried to fight the seizure onset, his head shaking, his body stiffening and his eyes flickering. Lisa was madly swiping but it was too late, the seizure broke though.

A mild one, but still lasted about a minute or so. Only eleven days since his last one and I was bucking. Angry at everything, angry at the world, angry at epilepsy and blaming everything under the sky. Why can’t Fred run around and have fun? Why can’t we be allowed to relax while he has fun?

In my anger I took Jaden home, who asked about a million questions along the way. This helped dissipate my anger, even made me laugh at the way our J man looks at the world. When I got home Fred was awake, groggy but aware of the world. The rest of the evening went fine; Fred slept and woke occasionally for toilet breaks. He even woke for food and watched a DVD for a while. He didn’t have another seizure which was wonderful and slept a peaceful night beside me.

Yet another eventful week in the world of Fred Verling. One where he took everything in his stride; charmed the girls and took big steps in his education. Sure epilepsy paid a visit but Fred took care of it as well, politely showing it the door after its brief visit.

Never a dull moment with our Fred.
 

 

 

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25May/140

The Return of The Man

During the most recent seizure-free gap which Fred has gone through, he has suffered very little confusion. This is the feeling that Fred gets when a seizure is on the way and it’s not uncommon among epilepsy patients. I’ve asked him to describe it and he just says “it’s the confusion”.  The only comparison I can imagine is that fuzziness of a hangover or when you have a bad cold. We notice that Fred’s eyes dilate and he gets that far away look, Lisa is better at this than me.  Luckily a swipe of the magnet and the VNS clears the confusion within minutes. Before the VNS Fred would have to lie down, fall asleep and wait for a seizure. For this reason Denise is given the magnet at the school gate every morning and she hands it back when he’s going home. Fred didn’t want the magnet at school initially but now he sees the benefit.

With all this confidence from the VNS Lisa has stopped going down for school breaks and lunchtimes. It doesn’t mean she’s not worried sick or doesn’t jump at the slightest beep of her phone. We both knew however on Monday, when the school principal rang at just gone 1pm, that something had happened. In seconds we were in the car and shooting down the road, Lisa cursing a long vehicle that was holding up traffic. At the school they had the gates opened and one of the teachers was out stopping traffic. As Lisa parked I ran in the door to find Fred in the lobby, lying out on his chair. The seizure had hit just after lunch and luckily Fred was back in his seat. Without any panic they had slid the chair out to the privacy of the lobby and were waiting for us to arrive.

Fred half opened his eyes when I spoke. Though groggy he wasn’t totally wrecked, Denise had given him a swipe of the magnet which must have helped. In less than a minute we had him in the back of the car and on the road home. There Lisa took over completely and had him comfortable on the couch in his pyjamas, while I tidied up around them.

In all the day went smoothly, so smoothly in fact that we were constantly awaiting a backlash. Fred had just the one more seizure, woke for a sandwich but slept most of the day. When I came home with Ruby he was awake and he managed a bit of dinner. What Lisa and I feared was that a big cluster was bound to break through, it usually does but Fred was having none of it. He watched a movie, had a row with his mother and came up to sit on my lap for a while. Lisa took him up to bed at 9.20pm but he didn’t want his mother and so I was called. We read a book and Fred dozed. I must have fallen asleep because Fred woke me at about 10.15pm as I was snoring. Soon he was fast asleep and I was wide awake.

As he fell asleep I watched him constantly, waiting for the epilepsy to come back. Fred did a lot of talking in his sleep, a lot of dreaming and a lot of smiling but eventually fell into a deep slumber. As for me, I read a lot of my book and it was gone 2am before I dared turn off the lights.

In the circumstances it was a great day and we can only hope it’s part of a new pattern.

Tuesday was spent recovering and Wednesday he was back to school.

“I can’t go back there Dad,” said Fred Tuesday evening.

“Why not?” I asked.

“Because I’m sick of their rules,” he answered, hands out in dismay, the big brown eyes looking up at me.

I didn’t have an answer to that one as it rang a lot of bells for me. On Wednesday morning the two of us got down to the school a little early and everyone was delighted to see him, as always, and Fred slid in as if nothing had happened. Jaden hadn’t yet arrived but the other kids just carried on as a normal, no fuss was made and the magnet was handed over to Denise.

Just like a normal school day.

When I collected Fred at lunchtime he was in great form, laughing with Denise as walked to the gate.

“You won’t believe it,” he said to me, with a big smile on his face.

“What?” I asked in disbelief.

Fred threw his hands up in the air.

“Jaden and me are best friends again!” he exclaimed, “I asked him and he said yes.”

The picture of Freddie asking Jaden that big question brought a tear to my eye; it must have meant everything to him. It didn’t matter though as all went well and the J man was back.

Friday morning Fred and I went over to collect Jaden. Lisa had lost his Mum’s phone number so we had to call unannounced. Fred was straight in the door but Jaden was still in his pyjamas. They had a day off school as it was being used as a voting centre and Jaden was making the most of his lie in time.

“Come back later when I’m ready,” I heard Jaden say, “in ten minutes.”

So Fred and I went on a drive around town, getting a coffee and lemonade as a special treat. Jaden came for the day, had great fun and the two seem to be back to normal. At one stage they had the girl from across the road in for biscuits, milk and a movie so it was a very sociable day.

Considering the week got off to a bad start it ended very well. Jaden is back and Fred enjoyed having him over. The cluster was controlled by the VNS and possibly the intermittent confusion is beginning to abate.

We’re planning a trip to see the new Godzilla movie this afternoon.

Fred will have to see if it matches the originals.

I can’t wait.

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18May/140

This Charming Man

On Thursday I set off to collect Fred around 2pm. As I got to the school Denise was standing at the side of the road, waving me down. Though not having Fred with her was unusual I wasn’t concerned. So has our lives changed that a few months back the sight of Denise on her own would have me assuming the worst, now I saw nothing unusual in it.

She came out on the road to meet me...

“All is ok,” she kept saying over and over again, reassuring me though I wasn’t yet worried, “he’s down in the park with Ms O’Connor and the other kids.”

Denise had Fred’s bag with her, she’d walked back to collect it and to find me when 2pm came. She jumped in the back and we set off to the little park by Blennerville Windmill.

“He’s had a great day,” Denise said to me in the rear view mirror, like a taxi ride. “He’s been playing football all morning and then went on the nature walk down to the park. He’s in great form all together.”

“He’s had a great week,” I answered proudly, catching Denise’s eye in the mirror, to which she nodded.

This was Activity Week at school. Every morning I’ve dropped Freddie at the Windmill car park where the whole school had gathered. From there they’d walk in convoy to school, no more than a ten minute journey but all part of getting the kids out and about. The excitement was massive each morning and once I dropped Fred with Denise I’d head off. On Tuesday I went to the bottle bank afterwards and passed the hundred or so kids walking along the footpath as I made my way home. Fred in the middle of them, holding hands with Denise, Jaden on her other side. All three full of chat and laughter, it was great to see.

Fred and Jaden are on a bit of a break. In the last couple of weeks they had a few rows at school and though still friends, they seem to be not as close as they were last month. One row seemed to be that Fred wouldn’t sit down in the classroom. Jaden told Fred to sit down as something might happen to him, Jaden having gotten the worrying bug from being around our house. Newly confident Fred wasn’t having it and brushed Jaden’s arm away when he went to pull him back into his seat. A few pushes were exchanged and the two fell out as a result. Jaden told Fred he’d have to find a new friend, poor Fred was very upset at that one.

Another row was started by Fred breaking Denise’s rubber. Jaden took exception at this and punched Fred in the arm, according to Fred who sang like a canary when asked. Some pinches were exchanged and the two went their separate ways for a while. Fred hasn’t asked to have Jaden over this weekend and apparently cold war conditions are still operating in the school yard. All part of school life and no doubt to the two will be reconciled in the coming week. If anything Jaden just wants to care for Fred but Fred isn’t having it anymore so the two will have to find a happy medium.

With all the activities this week the two haven’t spent as much time together as usual so they haven’t had the time to make up their differences. On Monday when I collected Fred it turned out he’d spent the morning orienteering at the local GAA pitch and had been on a Garda Search and Rescue mock mission. The photo of Fred sitting in the patrol car took pride of place on the school website. When Fred came home he told me about the sniffer dogs and all the running. He’d been in Olivia’s orienteering team and later she was full of how out of breath he was but still wouldn’t stop running. Fred even did a sample run up and down the front room of how out of breath he had been but also showing how much he loved it.  Luckily Lisa didn’t know he’d been doing all that activity or the Rescue team may have had to make a call to Ballyard.

Tuesday was a quiet day, just the walk to school and football in the yard. Lisa collected Fred from school but just as he came out the front door he vomited all over the entrance. Denise said afterwards that it was either in the porch or out in the yard and so she rushed him out the door. Fred came home a very sorry looking figure and we feared the worst. Though he stayed in for the afternoon the seizure activity never materialised and Fred had a big dinner...

“It was just apple puke,” Fred told me later, confirmed the next day by Denise as she told me what Fred had left on the doorstep.

The man was back at school Wednesday morning as if nothing had happened and all the school were delighted to see him at the windmill in time for the walk. A day of activities again and he was a tired boy when he came home at 2pm. No escaping Ms O’Se though and she was around for homework at three o’clock. There was time before that for Fred to get his first nettle sting of the season while playing outside. This he proudly showed to Ms O’Se, half in an attempt to get her to go easy with the homework than anything else. The two told me how they’d had been making Rice Krispie cakes at school that morning, enough for the rest of the class. Though going in Blennerville this week.

Funny how the week went. On Monday Fred was adamant that he was finished with school, vowing that he would never return. This in part was due to the fighting with Jaden and also the natural rebelling of any eleven year old. In the end though it was probably his best so far, loads of fun and giant steps in his getting back to normal.

One big, noticeable improvement has been in his walk. No more the slouching, head down, ponderous gait of the last couple of years. Now he walks with confidence, head up and proper strides, better than his elegant mother even. Denise was telling me on Thursday that Fred wouldn’t have her walk with him in the playground. He told her to go away and strode off; stopping to talk with others he met on his way. Denise of course wasn’t too far behind but Fred kept looking over his shoulder to check that she was far enough away. In typical Fred style he was too busy looking over his shoulder to mind where he was going and narrowly missed the wall a few times.

Denise was laughing at this as she sat in the back of the car on our trip to the park. When we got there Fred was in the middle of a group of friends, Jaden off with another group. As Denise got out of the car Fred walked up to her, hands behind his back. Just as he stopped in front of her he produced the bunch of daisies he’d picked while she was getting his bag...

“These are for you,” Fred said holding them up, “I picked them.”

Denise was overcome.

With that Fred got into the car with a big thank you and goodbyes all round.

What a way to end a great week.

 

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