Daisy And Me People I meet when on my walks with Daisy

28Sep/140

Bradley Cooper Ruins the Day

“I had a bad night last night Dad,” Fred said to me as we drove to school Friday morning.

“What happened?” I asked. Having been at a meeting the night before and only arrived home at nearly midnight, I’d no idea of what had happened in my absence.

“Well I was fighting with the girls,” he started, the girls being Ruby and his mother.

The story continued onto how the girls had put him in the kitchen, apparently for no reason at all and Mummy even tried to put him to bed early but he wouldn’t go. This persecution of an innocent would normally concern me but I knew it was only Fred’s half of the story on offer. Later when alone with Lisa I learned how Fred wouldn’t hand the remote control to Ruby, egging her on until a row broke out.

“He’s some fecker,” Lisa said, in one of her more restrained descriptions, “some fecker for causing trouble.”

It hasn’t been a good week for Lisa either, what with George Clooney getting married and discovering yesterday that Bradley Cooper is dating a twenty-two year old. The same actress Lisa was admiring for her beauty and style until she read who the poor woman was stepping out with. The magazine was thrown to the floor in disgust along with some choice words. The fact that I was in the room didn’t seem to matter.

The week didn’t start well either. Fred had a seizure in bed Monday morning, only ten days since the last cluster. Ten days too soon. As usual we’ve no idea if this is part of a new pattern or a glitch. I knew something was on the way when he had a couple of frontal lobes between 4am and 5am. A full one broke through about 7am and so our Monday got off to a great start. Though he had another about 9am he still wanted to get up and go downstairs.

On the couch he slept the day away, had a couple more and a few more frontal lobes, that always catch you unawares. In between sleeps he woke to watch TV and drink glasses of water. Ruby got on with her day. Lisa did her things, studied, walked the dog and we all had a peaceful dinner before settling in for the evening. Fred woke fully about 5pm and though dazed he managed to stay awake for DVDs and bathroom breaks. All in all it was as routine as these days get, managed by Lisa with me in attendance.

Fred and I went to bed about 10pm. We read a few stories and the two of us fell asleep with me sitting up and the man under my arm. Another few frontal lobes kicked in, the first one scaring me awake but they stopped about 2am, not before Fred had a nightmare. The frontal lobes tend to happen when Fred is falling asleep, going from stage one to stage two sleep. We all get minor ones when falling asleep from time to time. It is the sensation of falling off a cliff or similar that will jerk you awake. With epilepsy you have a minor seizure at that stage, causing you to stiffen and cry out.

When Fred is in a cluster he is susceptible to these seizures. They usually kick in about fifty minutes into his sleep, waking him and so starting the cycle all over again. On Monday sometime after midnight he’d been asleep for about ninety minutes when he woke suddenly, looking at me with fear in his eyes.

“I had a nightmare,” he said, “about scary faces.”

He rolled over and went back to sleep. The last frontal lobe kicked in a bit later but about an hour afterwards he was snoring and the worst was behind him. Fred slept well for the rest of the night. On Tuesday morning he came down for breakfast though he didn’t have an appetite but was back to normal by lunchtime.

On Wednesday Fred was back at school. He was protesting on Tuesday night that he couldn’t go back but told me in the car that he was excited to be seeing his friends. Denise took him from me and Fred walked in with his head held high. When I collected him at 2.30pm he said he’d had a great day playing with his friends. The two of us were stopped by the pavement, talking and waiting for a gap in traffic. Fred rolled down his window as two guys walked past. They waved and said “Hi Fred.” To this Fred waved back saying “Oh hi.” Just a normal guy doing normal things, that’s our boy.

The rest of the week went well. The mobile library paid its monthly visit to the school and Fred came home with more books, which he put by the bed. Monday may almost have not happened for the way we’ve forgotten about it. Having the weekend come so quickly helped too, allowing us to relax and put it behind us.

Yesterday Fred and I went shopping around town. Just buying the groceries and the newspaper so we could all relax over a lazy lunch.

That was until Lisa opened that magazine to read about the up and coming pretty actress on the cover.

“She’s going out with Bradley Cooper......”

Day ruined.

Oh Bradley.

 

 

 

 

 

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21Sep/140

Repeat, Repeat, Repeat

Yesterday evening I was preparing dinner and listening to match reports on the radio while I worked. Everything seems brighter with the world when you’ve just watched your team win three nil away from home and then you go listen to the praise on the radio. Such was yesterday evening, the sun was shining the last of its warmth on what was beautiful autumnal day, Özil was the best in the world and the children were waiting to be fed.

Suddenly the screaming started, some of the worst I’ve ever heard, the kitchen door was thrown open and somebody ran in. I turned, screaming my head off to see the little black figure come running towards me. It had all happened so quickly that I wasn’t even aware what was happening and I kept screaming till my chest ached from pushing out the air. The little figure still screaming and dressed in last year’s Halloween skeleton costume stopped in the middle of the floor....

“It’s only me Dad,” said Fred pushing up the mask, “Freddie your son, it’s ok don’t be scared.”

But I wasn’t ok. Fred thought he’d scared me with the costume, which he had in the way he scuttled into the kitchen, but it was the screaming that really caught me. Lisa was out and Ruby was inside watching a program. So with such blood curdling screaming I really thought something terrible had happened. Just goes to show how close we live to the edge of reason, at least I do, when it comes to Fred and our worries about him.

Fred cuddled me close to him, reassuring me that all was well, putting on the mask again and lifting it to show the difference. Earlier he’d found it while poking around the spare room and asked if he could try it on. To this I agreed but didn’t expect it to fit at all. Funnily enough the costume fitted him well, he’d been a snug fit in it last year but by growing taller and losing some of his puppy fat, he’d sort of grown into the scary skeleton. Certainly scared the bejasus out of his poor old Dad.

Maybe it was because we’ve had such an ordinary week that the fright was that much greater than it should have been. Fred put down a full week, earning praise from his teachers, ‘the women who care for me’ as he puts it, and had done good stints in the library. We go to the library after school now, to do his homework and practice from the large folder given to us by the speech therapist. Fred goes, somewhat resignedly but the deal is that he can go home afterwards and the rest of the day is his own. Better than him coming home straight from school, having lunch and digging his heels in when homework time arrives. Four days a week we go, do forty minutes or so and come home to relative peace. If we time it right we can pick Ruby up from school too as her school is just across the road. A big contrast to the last few years and we’re all the better for it.

With Fred’s education it’s all about repetition, repetition, repetition. Eventually something will stick. An old teacher of mine, an educator in the true sense of the word, used to say “repetition is the basis of all linguistic study.” To us ten year olds the theory made no sense and only meant continuous playing of Irish verb declensions on the old reel to reel tape machine. Ironically what stuck the most in my head is his wise one-liner but then, if pushed, I could probably rattle off the genitive clause any modern Irish verb too.

So it is with Fred and I say “repetition is the basis of all linguistic study,” whenever I sit down with him. Unfortunately for Fred we have to repeat all instruction to him to try get it to stick. How to sit at the table, not to eat with his mouth open, not to go outside in his pyjamas and many more to the extent that he must be fed up of listening to us. By and large though he is taking it on board. We’ve seen a marked improvement in him over the last while and his education has come on greatly. On good days in the library I’ve taken random early readers from the shelf and he’s read them at ease. What I’ve been trying to do was to get away from the familiar texts and see if can still recognise the words. Only small steps but an improvement none the less, though both of his parents have exhausted their limited supply of patience by the end of most weeks. That glass of wine or beer of a Friday night is much welcomed.

This week Italy was being studied at school, though it being Kerry, today’s All Ireland Football Final was the big news. Fred was allowed wear a Kerry jersey to school most of the week and by Friday the kids were in full kit. Luckily an old jersey of Ruby’s fitted perfectly and the retro style was trés chic. Also on Friday the culmination of all things Italian came in a morning of pizza making. Fred went off with a Tupperware of grated cheese and a tin of sweet corn as his favourite toppings. After school I collected him and Denise said they had a great morning, certainly the screaming coming from his classroom implied a lot of fun.

“Did you have a good time making pizza?” I asked Fred in the car.

“Oh yes,” he answered, “I had four slices!”

Four slices? He wouldn’t have gotten away with that at home...

As we drove towards the bridge Fred was quiet.

“What is it?” I asked.

“Are we going to the library today?” he replied, one eye on the bridge, the other on the turn-off to home.

“No library on Friday, you know that,” I answered.

Fred perked up immediately.

“That’s good,” he said.

Four slices of pizza and no trip to the library.

You can’t beat that.

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14Sep/140

Bravery in the Course of Duty

A very quiet day in our house. Lisa has gone to collect Ruby and Fred has gone along for the drive.  There was talk of collecting Jaden but I’m not sure of what was the outcome. It’s unusual to have such silence but the little girl across the road is having a party with a bouncy castle so the screaming will start soon. When Lisa and I saw the castle go up this morning we both feared the worst. Fred likes nothing better than bouncing up and down in one but his epilepsy likes nothing better than to hit when he’s bouncing. It must have something to do with the movement but he’ll always go down when in a bouncy castle. Which is the real reason why Fred has gone to Dingle, the last thing we both wanted was to be fighting with Fred about him having fun.

Just not fair on him.

It didn’t take any bouncing for him to collapse at school on Friday. Only eleven days since the last episode and we’re not even going to analyse or ask why. It has been very hot lately, maybe that was a factor just like before the school holidays, who knows?

Lisa rang me at home to get over to the school. Luckily Ruby was off her school for the morning and the two of us shot over. As we drove up we could see Fred on the school yard concrete, wrapped in a blanket, a cushion under his head and four women around him. He doesn’t want for care at Blennerville, that’s for certain.

We got him in the back of the car. The poor man’s face was covered in grazes and the brow of his nose was badly cut where the bridge of his glasses had jammed into him. Apparently he’d been talking to a group of girls and just as the bell went for end of break he went down. Talk about waiting for the right moment, just as all the school was gathering.

Ruby sat in the back with him and we drove home. Lisa was there before us and we walked him into the house. The usual routine of laying out the couch was done and Fred took up residence for the afternoon. He slept for a few hours, had another seizure but that was it. Around 8 o’clock he woke for some pizza, watched a movie and the two of us went up to bed about 10.30 pm.

On the last few clusters the epilepsy took a break before hitting again as he fell asleep at night. Thankfully not so this time and around 1.30am I stopped watching and fell asleep myself. For the next while the slightest movement had me jumping up but I must have fallen asleep eventually. The next thing I knew Fred was waking me from a nightmare...

“Stop making all that noise Daddy, I’m trying to sleep,” he said.

So that was it. Fred woke Saturday morning as right as rain. We kept him quiet for most of the day and despite the odd row with his mother all was well. After breakfast Fred said he had to tell me something.

“I’m really sorry for fainting at school,” he said, “I’m sorry for all the cuts on my face.”

Breaks my heart every time.

Yesterday I spotted Fred checking out his battle scars in the mirror.

Tomorrow will be a day of getting attention for bravery.

Our man will deserve every inch of it.

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7Sep/140

The Mayor

As Fred missed out on so much schooling and socializing during some important formative years his everyday experiences have suffered.  Resulting from all this his vocabulary can be limited at times and his knowledge of what to do in certain situations. Outside of all this Fred will always have a different view of the world which we love and hope to encourage as much as possible. Unfortunately though we have to practice some tough love at times but the constant correcting seems to be paying off. Fred walks a lot better than before, he forms sentences where once all he had to do was make himself understood and he has to do things for himself instead of one of his parents. After lunch today he was going out to play but, without prompting, he brought his plate to the sink, a task his sister still hasn’t mastered.

Vocabulary and sentence forming is still a problem but he’s improving and recently he only has to be corrected a couple of times before getting the right word. I still love Fred’s words, the ones he makes up when he doesn’t know the right one to use. As we were driving to collect Ruby this morning Fred asked me:

“Did you have fun at the beer restaurant?”

“The beer restaurant?” I asked, trying to think of what he was trying to ask.

“Yes you know, the beer restaurant with Billy’s Daddy?”

“Ah you mean the pub,” I’d been for a couple of pints on Friday night.

“Yes, the pub, did you have fun?”

Looking back at it I think that ‘beer restaurant’ sounds a lot more respectable than ‘the pub.’

The fun we had was paid for yesterday but was worth it all the same.

For once I didn’t feel guilty indulging Fred in another habit which we’ve been trying to break. If Lisa or I are lying on the couch Fred will home in on you, grab a blanket and cuddle up. It really is lovely but he’s getting a bit big to be at it all the time plus he spent enough hours lying out over the last few years. Yesterday after Lisa and Ruby left it was all I wanted to do and having Fred next to me was the easiest way to keep an eye on him. In the end the two of us ended up having a snooze which did the two of us no harm at all.

This week had been Fred’s first full week back at school, well nearly full week. He managed to sneak in a small cluster of seizures on Monday evening, thankfully after school. When I collected him at 2.30pm I could tell by the worried look on his face that all was not well. The furrowed eyebrows and sticking close to Denise as he walked out told me that not all was well. The confusion had come on around 2.15 and Denise had given him a few swipes of the magnet to get him to going home time. A sensible approach, not making an unnecessary drama of the situation and Fred walked to car unaided.

Back home he lay out with his mother and a seizure broke through about an hour later. Fred slept it off and woke for dinner, watched a movie before going to bed about 10pm. In bed another couple hit; he can be susceptible when drifting off to sleep. Another one broke through as he woke around 8am, again waking can be a time of weakness but that was it. The rest of the day was spent snoozing and recovering. The man was back at school the next morning and after a slow start there was no stopping him according to Denise.

That was twenty-one days seizure free, a day shorter than before but still a good break. Keeping the seizure count to four was bonus and I don’t think they were as violent as other times. Possibly the VNS output change has had a good effect but only time will tell.

Now I can see Fred and Jaden heading off across the green. The two of them eating ice creams and chatting freely about whatever. It’s great for Fred to have a friend like Jaden and the J man loves coming over to be spoilt by Lisa as well as playing with Fred.

When we were driving home from school on Friday the car was stopped at the traffic lights outside of the school. Lines of kids were walking past, heading to their own parents’ cars. It was warm and Fred had the window rolled down. A chorus of “Bye Fred,” came from each passing group, Fred regally waving at some of them and nodding at others like the mayor of Blennerville.

I didn’t say anything, just listened to the greetings and happy to see Fred interacting with friends, just being one of his class.

Our man getting a bit of independence at long last.

Great to see.

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