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

3Nov/130

The Beard Observation

Once Fred gets something in his head that is it. It stays there forever or until some shock knocks it out. Usually that shock is one of his parents reaching breaking point and saying something like...

“If you ask about Tara coming over one more time, I’ll lose my life,” that would be the mother.

“If you don’t stop going on about trick or treating or I’ll turn the TV off,” the father.

Then Fred will know he’s gone too far. He’s pushed his obsession with having everything right in his head or realised that everything in his head is ok...Tara is coming over and Halloween is this week. He’ll look at you and say something like...

“Ok, ok I understand, I know I know I’ll stop talking.”

This is the last thing we want him to do, after spending so much time and effort on getting him to talk. To break my heart he’ll phrase it personally...

“Ok, my Dad.”

That ‘my Dad’ gets me every time.

With Halloween he asked when it was, it was being talked about at school and he was excited. This is another great thing about having Fred back at school, his awareness of what’s going on around him.

“Is Halloween tomorrow?” he asked me one day.

“No, Fred, it’s in fifteen days time.”

Explaining the concept of fifteen days time wasn’t as difficult as previous times, another sign of what school has been achieving, getting him to work problems through in his head.

A couple of days later he said...

“Number fifteen is gone and now it’s thirteen, the two have gone?”

So it went in the countdown to Halloween but once he got in the swing of it he was able to work the days out in his head and not ask those cryptic questions.

Which made the fact that he went into a seizure at 6am on Halloween morning even more annoying. The poor little man was so looking forward to the big day and now epilepsy was having its say.

The day before we’d had Jayden over, for some reason the first time of this mid-term break. Fred was only delighted to have him. The two immediately took over the front room, every electronic device we had was turned on. Jayden had the laptop blasting something off YouTube, something else was going on my tablet and he was busy trying to get Ruby’s laptop going as well. Fred meanwhile had himself beside his great friend, under a blanket and getting The Hulk going on his DVD player.  The TV was going too.

They were having great fun.

Unfortunately Jayden could only stay for a couple of hours but for that time he stayed close to Fred. He seemed content to just hang out, do his own thing while Fred did the same. At about 4.30pm it was time for Jayden to go home and Lisa took him in the car.

Lisa came back looking upset, as if she’d been crying.

Our man Jayden hadn’t stopped talking about Fred all the way over. Asking lovely questions about Fred’s history, how long he’s had epilepsy, what was he like before the epilepsy, did he have many friends in Dingle. Also, and this really put Lisa over the edge, he spoke of how much he liked coming over, how much he liked being with Freddie and could he come trick or treating with him?

It’s a wonder Lisa didn’t crash with the tears in her eyes.

All that had to be cancelled with that early morning seizure. However though a full blown cluster didn’t really develop. Throughout the morning he had a few frontal lobes, five second or less, maybe four in total. By about 11am he was up to coming downstairs and he even had breakfast, it was sort of a normal day.

Ruby had been away since Monday and unexpectedly she arrived in the door about 2pm. Only on a stopover though. She was on her way back to Ali’s for Halloween but Fred gave her the biggest hug ever when he saw her. After Ruby left again Fred snuggled up to me, had a short snooze but by and large he was unaffected by the morning seizure. Lisa and I were expecting the cluster to kick in at some stage but nothing happened. Fred was even aware that it was Halloween.

Somewhere inside me I found the strength to take him trick or treating. Lisa is usually the brave one, going to the beach or to the market with Fred but this time I took the chance. Fred was in his skeleton suit in a flash and Lisa found me another mask. We are lucky that it is a small estate and our corner only has a few houses, so at least we weren’t going far...

The two of us went next door. Fred rang the doorbell and when Linda slowly opened the door he shoved out the pumpkin basket and asked trick or treat? Linda reacted brilliantly and Fred loved it but kept the basket out. The box of sweets was produced and Fred waited for Linda to fill the basket. I had a cautionary hand on his shoulder, always expecting the worst. Lisa was at our door, doing the same.

After Linda we crossed the road. Heidi’s house was full of young kids and they were excited by the skeleton at their door. Freddie got another bag of sweets and we headed for home, the lights were off in the other houses. Back home Lisa was relieved that the trick or treating had ended with the treat only. Also she has a sweet tooth so the two went through the basket picking their favourites.

Friday morning Fred had a drop seizure when getting dressed. Luckily he was sitting down when he was thrown to the floor and it was all over in seconds. He hasn’t had one of those in a while and of course we thought the cluster was eventually kicking in. But no, nothing followed and we got on with our day, Fred even came on the drive out to collect Ruby.

Maybe we’re all getting a little braver.

On Saturday the Swains’ came over for lunch, passing through on their way home to Canterbury. Fred said he’d be too shy to see them but I asked him to be brave and he said he’d try. Lisa and I spent the morning preparing and I think Fred got air that this was going to be a good time. He was on trial a small bit, a family of five was coming to the house and he was on strict instruction not to revert to childish antics as he often does. I think this has been his default way of trying to fit in, to find a way to get people to like him instead of just being himself.

Bang on 1pm they arrived and Fred went to the door to welcome them. Though nervous he didn’t show it and soon he fitted in as if this was an everyday occurrence. In a way visits are now. People come and come, come and stay or just drop in. Having five adults, full of chat and laughter was great fun, something a bit different for Saturday lunchtime. We all sat around the table, Fred squeezing in an extra bit of quiche and joining in the conversations.

After lunch Fred stuck. He got Mark to come look at his Godzilla collection, I think Fred had sensed he’d found a soft touch in the Dad. After a few minutes I went to see what was happening. Fred had got the whole collection out but more than that he had Mark under a blanket watching YouTube clips with him.

Mission accomplished for Fred.

Later Sam joined them. It was a great sight to see the two grown men, under Fred’s blanket, one either side of Fred and Fred propped up on his pillows.  The three watched Godzilla while Freddie gave a running commentary. Sam, a student of Film Studies, was genuinely amazed at Fred’s in-depth knowledge of plot and characters.

As we had all drifted in to the front room it was soon full of chatter. Fred looked at Mark and Sam. Then he looked over at me. Noticing something about the two Dads and the two sons, he made one of his great observations...

“You must have a beard to be a Daddy.”

Later Tara arrived over and she was staying the night.

Fred’s week was complete.

All things considered it was a great one.

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Posted by John Verling

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