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

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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Posted by John Verling

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