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

2Feb/140

The Star of the Show

Fred was due to finish early at school Friday. The school were going to a mass and we feared what the excitement of heading off to church might do to him. It’s something buried deep inside Lisa and me, a fear of the unusual for Fred, what might happen when he’s doing something out of the ordinary. The worry comes from past experience but, try as hard as we do not to allow it, the past still does haunt us. Just because Fred has gone down before doesn’t mean it will happen again. The other side of our worry has a more practical aspect. If he does have a seizure somewhere how easy would it be for us to get him out and safely home?

With this in mind I explained to Fred’s SNA that one of us would collect him at 11am. She understood. It was a miserable day and the idea of getting Fred back home early I have to say made me feel good. There is something deep inside, a feeling of having Fred safe under our roof while the wind howls outside that will always be with us. The late arrivals rushed past me and I closed the school gates knowing Fred was in good hands.  As I got into the car I saw Rose, Fred’s teacher running towards me....

“Fred doesn’t have to go to the mass you know?” she said, “it’s in another classroom and lots of the kids will be staying with me.”

That sounded a bit different from bussing them across town.

“And,” Rose continued, “they’ll be having pizza afterwards, followed by a movie at 12.30. If you want he can stay on till 2.15 today.”

Now that was something completely new and sounded like a perfect day for Fred. Of course I agreed and asked if I could come too; I even offered to bring the wine, Rose almost weakened...

At home I waited for Lisa. The look of disappointment in her face was funny. Like me too she wanted to have Fred home safely at 11am. The sooner a week ends at school the better, for our own selfish reasons. However now not only was she not getting her boy home early, but he was staying on an extra hour. Oh the worry of being Fred’s parents; thankfully he’s not in the slightest bit aware of our madness.

The school was up to the high doh all week as they had an inspection from the Dept of Education. Normally we drop Fred a couple of minutes after everyone else, just as it’s easier for all involved. But with the inspectors on the prowl Fred was there by 8.45am, every morning. Not that he seemed to mind. The party on Friday, I think was to mark the leaving of the inspectors and to thank all the kids for their co-operation. I wonder what would have happened if one of the inspectors came back unexpectedly to find the kids gorging on pizza and the teachers in party mode. How would they explain that one?

As I said, Fred’s usual SNA, Denise, was off for the last days of the week. Her replacement is excellent but no doubt she was extra worried about our Fred.  The school did excellently in getting such a suitable substitute on short notice.  When I dropped Fred off on Thursday morning I was met by the principal Terry, teacher Rose and the sub SNA. It was like the handing over of a new Dalai Lama to the entrusted monks. Fred strolled off to his classmates without a bother in the world, which is testament to the great workings of the school in this normalization process. When all had been explained Terry walked back towards the school gate with me. In a different time this could only mean that a student was in trouble. For our Fred though there was nothing but praise.

We spoke of how well Fred has adapted and how much everyone likes him. How his school work has come on and how much Fred has improved sociably. It was one of the important factors in his treatment stressed by Dr Amre and Cathy Madigan when we first met with them, just twelve months ago. When Dr Amre said he saw Fred getting back to school and having a social life as more important than treating his epilepsy, I couldn’t quite see it. I did understand where he was coming from but we were so focused on his epilepsy, that cure and then normal life was how we saw it for Fred. Now though, after a comparatively short time, his approach makes much more sense. Amre said to me privately one day that he saw Cathy’s work as important as any surgery and the Fred of today is proof of his thinking. Terry seems very aware of this and it is through his hard work and that of the great school that Fred has developed into the boy they see.

The funny bit of the whole week was that Fred was the star of the show. When the inspectors asked the class questions in Irish, only Fred was able to answer. This is an example of how his brain works, things get stored away and he brings them back at the most unexpected moments. Also it shows how much he has improved concentration wise. At times it does feel that the constant fog which surrounds him is gradually lifting. His prowess in Irish comes from his days at Lispole School, now almost four years ago. Somehow he managed to drag it all back up for the inspector...something must have clicked from the speaking ‘as gaelige’ that opened up those memories for Fred. Much to the surprise of everyone. Olivia also told me how Fred was full of chat with the inspector when he sat in on their one on one session. Fred even got him to play a game, after making sure he was comfortable.

“I was best at school,” Fred told me one day, “I did really good.”

Long may it last.

Lisa and I have been getting a bit tougher with our man, just not allowing ourselves to indulge him too much. We have to remind ourselves, and Fred, that he is now an eleven year old boy. No more the easy life for the man. His parents have expectations and with a little nudging he’s getting there. Not long ago Fred would fight you if you suggested he do something himself but now he just gets on with it...

“All right my Dad,” he’ll say but after a couple of times he doesn’t even look for help.

Last weekend I looked at Fred and saw the eleven year old boy that wasn’t always obvious to me. He’s a beautiful, handsome, tall young man and with all the help that wonderful personality is breaking through to match his appearance. No need for his parents to mollycoddle him, at least not too much...

So this week I stopped helping him dress himself for school. By Friday he was doing it all himself, not allowing me to help at all...

“No looking,” he said when I came into the room.

Then a few minutes later the fully dressed boy made an appearance.

“Da nah!” He said proudly, shirt buttons done, shoes on and the jumper pulled down straight. The tie wasn’t fully under the collar but what boy cares about his tie? On went the coat, zipped up fully and the bag slipped over the shoulders. Don’t know which of us was proudest...

Fred has improved too with going to bed on time and with sleeping. Only once this week did he not go straight to sleep and when he was trying to drag himself out of bed the next morning I explained why. He nodded and even on Friday night, he was asleep by 9.30pm. Lesson learnt for the time being.

A big problem has been Fred’s speech and the bad habits he’s developed. Forming sentences has always been a problem but that has improved greatly with the social interaction at school. Fred still will take a few seconds to answer you but that is to do with his brain function more than anything else. One bug-bear is the habit Fred never broke of answering any question or instruction with why?

“Time for dinner Fred,” would be answered with “why?”

Or a “let’s go to the movies Fred,” would get a “why?” too.

This week I spoke to him about it a lot, as did Lisa...

“Ok, ok I’ll stop saying why,” the little man answered me as we went to bed Monday night.

As I was washing my teeth I could hear Fred talking in the bedroom and I opened the door a bit...

“I must stop saying why, I must stop saying why,” Fred was repeating over and over again.

The little man was really trying.

He doesn’t have to try to break Daddy’s heart.

That comes naturally.

 

 

 

 

 

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Posted by John Verling

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