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

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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Posted by John Verling

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