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

5Aug/130

Out and About With Fred

The week just gone was Fred’s first full week of holidays since school finished. His first week without Elaine. Last Friday week we said goodbye to Elaine for the last time. She had her final session with Fred, even though he claims he doesn’t like them, the laughter coming from the front room has indicated otherwise. Elaine has been one of the finds of the year and she will be sorely missed. She came into our lives and took over the home tutoring of our Fred in a way that we could never have imagined. Now she has a full time job in Dublin and we’ll have to find a replacement. We fear we’ll never replace her fully. The tears that flowed when she left could have hydrated the Sinai. Fred though is unaware of her significance, as any kid would, and just gave a cursory goodbye after a tearful Elaine gave him a big hug. In the back of his mind he was seeing education free days and no more interruptions to his daily schedule of messing around.

This week wasn’t one of lazing around though. No more of that, now that we have got a semblance of normality back in Ballyard. On Monday the little man went off with Mummy in the car and came back with a cool haircut. Even this was something new. Lisa parked a bit up the street and the two walked down to the busy barber’s shop. Not long ago the idea of parking and walking somewhere with Fred was out of the question. The fear of something happening had us in a vice. Such a simple everyday thing for a family to do and now that we’ve done it once we’ll do it again, if something happens we’ll have to just deal with it. The two came back after a while and Fred had the coolest haircut, the best in a long while. The barber had even used the blade on the back of Fred’s hair to give it a lovely layered, spiky look. That and a gelled swish to the front of his crop of hair made him look just gorgeous.

I came down to inspect the work...

“What a cool haircut Fred,” I said.

“Yes,” he answered, running his hands through the back of his head, “it’s just like Paulie's.”

Having a haircut like his cousin Paul’s was just the best thing ever. All day you’d catch him running his hands over the back of his head, feeling the cut, loving the fact he had a haircut like Paul.

That wasn’t the end of his adventures for the day though. For a while now we’ve needed to get some passport size photos taken of Fred. We are entitled to a Disabled Drivers permit for Fred but it needs to have his photo on it. This will allow us, when Fred is in the car, to park closer to shop entrances which will give us more freedom in the places we go to when out. The freedom of knowing he won’t have to walk too far or if something does happen we’re not too far from the car will be great. On Monday afternoon we set off to the opticians to get the shots taken. I dropped them off at the door and went to park across the road. While waiting for them I didn’t worry much, Lisa was with him so all was ok. They came back out, Fred proud as punch that the photos had come out well and he looked handsome in them.

Mission accomplished.

Nest we had to go to the bank. Now this was a big one for us. Anyone who has been in an Irish bank lately will tell of the length of the ques. Staff cutbacks, combined with not giving a toss about the ordinary customer means that there is only one teller on duty in most branches. Fred and I had to go in as Freddie had to sign the slips. The Dept of Education pays Elaine for the hours she does each week with the little man. To keep things above board they only pay at the end of term and the money is paid into Fred’s account setup for such things. That money needed to be transferred to Elaine on Monday and so the two of us went into our local branch in Tralee.

Lisa dropped us at the door and in we went. Fred’s first time in a bank or any major place of business in a long while. We queued up. Thankfully it wasn’t too busy and Fred played with the pens and slips while we waited. I’d brought every form of ID for the two of us if needed and the teller was very understanding. Then Fred had to sign the Withdrawal slip. I told him to be careful and to do a neat job of it. In typical Fred style he wrote carefully and spelt out each letter as he wrote so as to not make a mistake. Thank you, Elaine. The queue was getting longer behind us but I didn’t care, I was so proud of Fred getting to sign his name in the bank and doing it so well. All new in our world. In no time at all the work was done and we walked back out to a worried looking Mummy in the car park. She too was delighted that all went so smoothly. Fred knew we were proud of him but didn’t let on; he was too busy playing with his new hair cut.

Last week I told Fred that we would be going to Aunty Claire’s both to give him something to look forward to and to give him a concept of time. All this week he’s been asking when are we going and then saying the days left, as I’d been telling him over and over. On Monday it was ‘three more sleeps and then we’re going’...every now and again you’d hear:

“Mum, when are we going to see Aunty Claire and Aunty Rudi and Tess and Louis and Granddad Jimmy and Otto and cousin Paulie?”

T o which the ever patient mother would reply:

“Think, Freddie. What day do we have today?”

“Monday.”

“And what day are we going?”

“Thursday.”

“So how many days is that?”

“Three...”

And then later...

“Are we going to Waterford in three days, Mum?” holding up three fingers in hope.

“Yes, Freddie.”

But it worked. I think he now has a better concept of time and days, counting down to when something is going to happen. His mother may have worn ragged by the constant questions and the different ways of asking the same thing but we go there in the end.

On Tuesday I had a few jobs to do around Tralee. Lisa asked if I was bringing Fred and out of habit, because I was going to a few places, I said no. Then I thought about it, why not? So I asked him if wanted to come and do a few jobs with me...he was in the car before I knew it. The two of us were gone about an hour or more. We went to the Garda station to get his photos stamped; to the Credit Union; to the bank again; to the Off-Licence; to the butchers; to the barbers for Daddy to get his beard trimmed and finally to the small shop to get a treat for Ruby and Mummy, some liquorice sticks.

It was so great for me to be out and about with my son, doing ordinary things but each one an achievement. Lisa has taken the lead in being brave about this, so it was time that I was as well. I loved it, the two of us driving around doing things.

When we got home, Mummy asked where we’d been but Fred couldn’t remember. A frustrating reminder of what epilepsy has done to our boy. Much as he tried he couldn’t get the memory to work. Very upsetting for us. He just looked blankly at us, just not able to remember, no amount of hinting made a tack of difference.

However that night the two of us were in bed. I said what a great day we’d had and thanked him for keeping me company. Then without prompting he listed off where we’d been and what we’d done. Amazing how that boy’s brain works. When Fred woke Wednesday the first thing he said was “tomorrow we go to Aunty Claire’s.” Time is beginning to mean something too.  It has been a tough one, with just a few expletives from his mother, but the effort to get him to think about days has been a success.  It is probably all connected, getting out and about, just living a normal life.

Lisa made out a list of things we needed as she had a lot of baking to do for the trip east. Continuing on from Tuesday’s success Fred came shopping with me. This time Ruby came as well. Fred brought the list, a pen to tick things off with and a coaster off the table to lean on when writing. As we drove over he added glitter and glue to the list, things he wanted for a card he was planning to make for Aunty Claire. We parked up in the car-park at the back of the big Super-Valu and in we went. Fred’s first time in a big supermarket in at least five years. It didn’t seem to bother him much. Around we went, filling the basket and ticking things off as we went; the coaster came in handy.  Ruby even picked out some hair gel so he could keep his hair like Paulie’s. We queued up like a normal family and Fred packed the bag, while I paid.

The two things missing where glue and glitter. Ruby knew a shop in town which may have it.

Off we set again. This shop was in the centre of town and though there was a Disabled Parking spot outside, I couldn’t take it, not having the permit yet. So I parked across the road in a loading bay, while Ruby and Freddie got out and crossed the busy street. Our Fred crossing the street to go shopping, holding his sister’s hand, how wonderful to see. I stayed in the loading bay, waiting. They seemed to take forever and the longer they took the more worried I got. It was busy and I was expecting a Garda to move me on. But it all went well. After about ten minutes, maybe longer, the two appeared, Freddie with a bag in his hand. They crossed the road and jumped in, Fred beside himself with excitement. Ruby said he’d been excellent in the shop.

Home we went to report to Mummy and to make that card for Aunty Claire.

Thursday was coming and Fred wasn’t forgetting that.

 

 

 

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Posted by John Verling

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