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

9Mar/140

Fred and Hugh

On Monday Fred just did not want to go to school. Sunday evening the excuses began and they were still going Monday morning at breakfast time...

“But Dad, I can’t go to school, I had the fainting,” a reference to his bad day at the museum on the Friday.

Followed by a line such as “I can’t go back to that place it’s too noisy.”

The noise is a recurring problem for Fred, as it is for a lot of people with epilepsy. Background sounds become amplified or meld into just white noise and it can be very difficult for Fred to tune in. Also with Fred having difficulty in keeping up with conversation, he really needs to concentrate and is only good at one on one chat. This was a point highlighted at a meeting we had in Dublin Friday morning. As Fred needs to think between each word, dragging the words together from the back of his brain, group conversation is next to impossible.

As the two of us got ready for school Fred was yawning and insisting that he was too tired. My usual comeback is that if he doesn’t go there won’t be anymore trips to the museum, no more fun at school and the trump card, no more Jaden. In Fred’s mind there would be nothing worse than not seeing the J man again so he reluctantly agreed to go.

After school Fred was very tired, nothing too unusual there for any man or boy on a Monday. He told me that Denise was cross with him for not knowing his words. Somehow I doubt if Denise was cross but she was probably trying to overcome a big problem in Fred’s reading skills. Fred he is very visual. His reading can be good when the text is accompanied by illustrations, another point that was raised at Friday’s meeting. What Denise had been upset at, as we all get at times, is when Fred can read the words in his book but not when they are on his separated word cards. The fact that his concentration levels are fairly poor doesn’t help either. At times Fred will prefer to look out the window or what someone else is doing rather than the matter at hand. Doesn’t help when you are trying to teach him and Fred is lucky to have a patient teacher like Denise.

Then on Tuesday he came home bright as a button. Denise had been very pleased, he said. When Ms O’Se came round for the afternoon hour she reported that Fred did great work and she was delighted with him. What a difference a day makes and Fred was lapping up the praise, delighted to make all the women happy.

Wednesday morning and there was another school trip planned. This time to the Aquadome, just next to our home here. Unfortunately, the one activity that is too dangerous for our Fred is swimming. With his epilepsy so unpredictable, though it has been good lately, the risk would be too high of something going wrong. Fred was not happy with not going swimming. The bus trip was on but actually going into pool was not allowed. Fred would sit with Denise and Rose in the café, watching the kids and playing games. Lisa was worried about the whole venture, after the trip to the museum on Friday going wrong, but as Rose assured her, he’d be well marshalled and would have a good time.

Fred did have a good time, though unhappy with not getting into the pool. He told Rose that next time he’d be bringing his swimming gear. We’ll see on that one. But at least he had another incident free school outing though Lisa, sitting at home, was none the better for it. Each time the phone would beep Lisa would jump, a call would put her off the deep end. Eventually after the two hours of torture she could take no more and shot off to be outside the school for when they came back, just in case. Though I was laughing, teasing her by saying I could see Coast Guard helicopters outside, I fully understood why she was so worried. It’s not easy being Freddie’s parents.

Fred was full of it when he came back….

“I have to go in that pool Dad,” he said, looking up through his brown eyes, “I need the exercise. I need to build my muscles Dad.”

This from a man who would have no problem asking his mother to get him a glass of water from the kitchen, even if she was sitting next to him. The poor fellow, he used to love his trips to the beach. I still remember holding him in the sea, letting him float on the gentle waves of Beenbawn, holding tight to his wet and wriggling little body. If he could he would have taken off after Ruby into the big waves, the sea held no fear for him. The laughter still rings in my ears from when he’d catch a small wave with his body board and wash up in the sand. Hopefully, those days will come back to us; I know Fred would love them.

On Friday we had another appointment at Temple Street, two in fact. The first was Fred’s next jump in the VNS settings. The double jump the last time was a bit too much, so this time Suzanne would only do the single bump. After the meeting with Suzanne we’d have the second of the sessions with the educational psychiatrists. Before all that though, we’d have a night with Conor and Cathy. The highlight of any week for Fred.

This time Ruby came with us so it was a real Verling family road trip, complete with rows before we even go out the door. Ruby was allowed stay home, saving us a trip to Dingle but Fred had to go to school. He was far from happy with this but at least he was coming home early, 12.30pm, so we could get on the road. I picked him up from school and he gave Denise a big goodbye, she telling him to have a good time with Conor and Cathy. Fred of course had filled her in on the trip, probably since he’d began counting down the days on Monday.

In Dublin Fred had a ball, as we all did. The make the trip even more special we had a Chinese for dinner and I think it was the only time Fred was quiet all evening, munching away at his vegetable noodle dish. It’s one of his favourite things, piling the food onto the prawn crackers or the white crisps as he calls them. That night we all slept soundly. Fred cuddled up to me and slept like a babe, the Chinese doing its job. No wandering around the house looking for a comfortable bed, not sure if he’d be better off with his mother or his Dad. The fact Ruby was cuddled up to he mother probably put him right on that one, she wouldn’t be too happy with being disturbed.

On Friday morning we headed over to Temple Street. Lisa and I were expecting a long session with the psychiatrist but we were out by 10.30am. The bump up with Suzanne had only taken five minutes, so we even had time for breakfast before the second meeting. The meeting went well. Though they could see that Fred had concentration problems they believed it’s linked to his epilepsy rather than any attention deficit syndrome. Though we also believed that, it was great to have it confirmed. The last thing Fred needed was to have another condition to deal with. We discussed the findings of the school report and highlighted Fred’s need for more social interaction. The points we were aware of before, speech problems, concentration problems, slowness in retrieving stored knowledge, it was all there. It will be hard work getting to overcome these difficulties but we will, Fred will get there.

After Temple Street, the ladies went shopping. Ruby had a party on Saturday night and she needed a top, plus half a dozen extras too. Fred and I dropped them by the Jervis Street Centre and went off on a drive.

As we drove up around Parnell Square I noticed the HughLaneGallery….

“Would you like to see some paintings?” I asked.

“Sure,” he said.

“Let’s go to the art gallery so,” I said, parking up in the disabled parking spot right outside the door. I hadn’t even checked if it was open, it was only 10.45am, but thankfully it had been since 10am.

The HughLaneGallery is in a beautiful old building in the centre of Parnell Square. In it’s time it must have been one of the finest buildings in Dublin, overlooking O’Connell Street below it. The gallery houses some of the finest Irish art with some wonderful pieces by Monet, Rodin, Pissaro and others.

“Wow,” Fred said when we walked into the reception area, “it’s so beautiful.”

We laughed at the Rodin bronze sculpture of the naked man near the entrance. In the galleries we wondered at some of the large canvases and Fred loved it...

“Can we see more?” he’d ask as we’d finish one room and move onto another.

In the Francis Bacon section, his studio in London, donated by Bacon to the Hugh Lane, has been carefully transplanted. Fred loved looking through the glass panels at where Bacon worked. We both agreed that Mummy wouldn’t be happy with the mess.

Downstairs Fred wanted to go in the bookshop and look around. He was fascinated by the fancy writing pads, at €12.50 very fancy, and every time we passed by he wanted to go in and look at them. When Lisa and Ruby joined us he brought them in to see the writing pads. After a coffee and lemonade in the cafe we hit the road to Tralee. In all Fred and I had spent over two hours in the Hugh Lane and we both loved it.

An uneventful trip home finished with Fred reminding me that I’d promised to buy him a writing pad when we got back. The two of us set off, leaving the ladies to settle back home. In the stationery shop we found just the right pad and some good markers, all for €4.50. Fred loved them and has been practising his words all weekend.

Yesterday though he had a seizure in the car. Only 8 days since his last one. Lisa was dropping Ruby and Ali to the bus when the confusion came on him and he couldn’t fight it. Jaden was there too and he helped Lisa get Fred comfortable. Poor Fred, so soon after the last one and just when Jaden had come over.

Thankfully though it didn’t develop into a cluster and Fred slept it off, waking in time for dinner. I asked him what happened and he said he had the bumping confusion that he couldn’t stop. What this is we’re not sure but I think he meant a strong build-up that happened so quickly it hit with little warning. Today he has a cold, maybe that added to the problem, we just don’t know. The only thing we can do is wait and see, hopefully the eight day break was just a freak event. The fact a cluster didn’t develop must be a good sign.

Fred slept well last night and is downstairs watching a movie.

It’s almost like yesterday’s seizure never happened.

Somehow I think he’ll remember it when it’s time for school in the morning.

Fred wouldn’t be Fred otherwise.

 

 

 

 

 

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Posted by John Verling

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