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

23Feb/140

The Best of Friends

On Monday Fred went back to school, between seizures and sickness he had been off for a full week. That’s a long time for a little man who needs all the education and interaction he can get. So on Sunday when his appetite returned it was all systems go for Monday morning. Not that he was happy about it but the news that he had only three days until the mid-term break softened the blow. On the other side Ruby was off for the full week, which only added to Fred’s sense of being the victim. The week that he’d just put down really was a lost week; constantly tired, sleeping, and feeling dopey, it  was like going back to the bad days for us. When he woke up Sunday hungry and then during the day looking to do things other than sitting on the couch, we were very relieved. If asked, Fred would probably agree, under pressure, that going back to school was for the better.

Usually now I drop him at the gate but as he’d been off, the two of us went into the school together. Everyone was happy to see the man and the welcome reminded me of how great Blennerville is for Fred. As usual Fred pretended to be shy and held back by the front door, just next to the coat hooks. Denise came out with a big hello as did Muinteoir Rose, and Fred smiled his best ‘please don’t be too hard on me’ smile which, along with his worried face gets them every time. Behind Fred though was Jaden, a big smile on his face too and when Fred turned to see him he looked like the happiest boy in Ireland. The two walked into the classroom together, Fred not even saying goodbye, which delighted me, he needs that independence another friend gives him.

At lunchtime Rose suggested to Lisa that Fred could do with more social activity. They both agreed he’d stay until 1.30pm, a time when the class tends to be more social and it would also make Fred feel part of the whole set-up. The sooner he’s looked upon as part of the class from start to finish the better, not some figure that comes and goes like an outsider. It’s only an extra half hour and the idea is to push it up to 2pm from next week. Fred will become a fulltime student once again. Also we’re going to get him to school early so as he’ll be part of the hustle and bustle of the morning activities. As it is we’ve being getting him in just as class begins and then he heads off for an hour with his resource teacher Olivia. From now on he’ll get to settle with friends before heading off and that can only benefit him. Fred also will take Jaden and another friend with him to resource teaching, to play board games once or twice a week. This will help him make new friends and increase his social activities. It’s all go for the man.

On Tuesday Fred was up and at ‘em early. He hardly had a chance to sit still after breakfast before we had him on the road. The extra few minutes will be great for him. When he came home about 1.40pm I asked Lisa how he had been with the jump. Fred didn’t even notice and of course he loved the extra time spent with friends. We know that he can only benefit from all this and when he goes to 2pm next week, the first part of his reintegration will be complete. Such a difference from last year when the thought of school terrified us.

When he came in the door I asked Fred how he got on...

“Oh fine,” he answered, “but there’s good news.”

“Ya”

“Yes, tomorrow we’re playing snakes and ladders!”

Snakes and Ladders at school, whatever next.

On Monday, Tuesday and Wednesday Fred had Ms O’Se around for his hour of teaching in the afternoon. Much to his annoyance but it really does benefit him. Ms O’Se doesn’t take any nonsense from Fred and he knows, eventually, that there is now no getting out of it. This doesn’t stop Fred giving out or pretending to have confusion or fight with his mother over Ms O’Se coming. The fighting with the mother is usually when I have to step in, as Fred blames Lisa for most bad happenings. He gets so cross and at times violent so it’s best I deal with it before he gets out of hand. The best I can do is threatening no more Jaden or Godzilla or in the extreme, banish Fred to his bedroom. When sent to the bedroom he calms down eventually but his strong will sometimes takes time to see reason and he has been known to spend a couple of hours in the cooler. Like Steve McQueen in The Great Escape the time in the cooler doesn’t seem to bother him but unlike in the movie Fred usually ends his time with a cuddle.

On Thursday though Fred was free of it all. No early rises for school, no Denise and no Ms O’Se in the afternoon. Ruby had already had three days of it and now Fred was going to enjoy his midterm.  About 9.30am I decided to get him up for breakfast. Routine is still important for Fred and messing around with sleep patterns can be a trigger. As I tried to get him out of bed all I got was...

“I’m tired Dad,” as he rolled over for more sleeping, back in under the warm duvet.

Again I tried to drag him out of the bed...

“But Dad, I’m not finished dreaming yet.”

What a great line. This time though he got up and came down for breakfast. Over breakfast he asked about Jaden coming over. It had been a couple of weeks and Fred loves having J over as does Jaden love coming to Fred’s house. Lisa sent Jaden’s Mum a text and went off for her run.

A bit later I got a text. Jaden was ready to be collected. Fred and I set off to get the man...

“Take the short cut Dad,” I was instructed and Fred showed me another way to get to Jaden’s house.

“Now when we get there, you wait in the car and I’ll go in and get Jaden. Ok my Dad?”

“Ok, my Fred.”

At the house Fred ran in and a few minutes later the two came out, laden down with sweets. Jaden was full of fun, obviously delighted to see Freddie too. As Fred got in I noticed he had a Nintendo DS in his hand, he’s taken it off the shelf in Jaden’s front room.

Unfortunately though he loves it, the DS jumbles Fred’s brain. After time playing it his speech is really bad and he can be very dopey or forgetful. Somehow Jaden knew this, maybe Lisa had mentioned it before.

“You can’t play with that Freddie, it’s bad for you,” he said and quite sternly too.

“But I just want to look at it,” Fred countered.

“It’s broken and it will hurt your eyes.”

Ok,” a disconsolate Fred said, putting it down, but keeping it near.

For rest of the day the two played and had great fun. At one stage, not long after they arrived Fred came in looking for a bowl. When I went in later to check on them they had the laptop on the ground, a big blanket wrapped around them and a bowl of skittles wedged between them. A nearly empty bowl. The two had been guzzling to their hearts content. Luckily they hadn’t opened the second party bag and I confiscated it along with the bowl, what was left of it. For the rest of the day Jaden was as high as a kite, full of giggles and fun. Thankfully Fred’s medicines kept him someway sober, one good side effect in the circumstances.

At dinner time the two had a treat of burger and chips. Jaden wolfed his down and asked what I was having for mine...

“Oh you wouldn’t like that hot chilli,” Lisa said, “it’ll burn your mouth.”

It was a hot one too; much hotter than I meant to make it but I’d assumed the green chillies weren’t as hot as they were. In fact I was taking my time eating it.

“I love hot chilli,” Jaden said, “my Dad makes hot chilli all the time.”

Fred looked worried.

He looked even more worried when Jaden polished off the plate, in seconds flat and asked for more.

“But Jaden you can’t eat more, you’ll burst.”

“I love it,” Jaden said, tucking into a second plate.

“But Jaden,” Fred was really worried, “you’ll get bigger and bigger and you’ll burst.”

There was real concern in Fred’s voice. Jaden is a slight figure and he was woofing away the chilli, licking the plate when finishing the second helping. Lisa reckoned Fred was worried that something might happen to Jaden and then Fred wouldn’t have his friend anymore. Fred was genuinely worried.

Later Lisa and Jaden were having a chat when taking him home...

“Fred is getting better all the time. I notice it each time I come over,” Jaden said.

Lisa was in tears telling me later.

Between Jaden bursting and Fred getting the better, the two really look out for each other.

What more could you want from a friend?

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15Feb/140

It’s Not Easy Being Fred

Today Fred is in recovery. Nothing too much, he’s just had a throat infection all week and he hasn’t had much of an appetite.  Last night the two of us discussed what he might have for breakfast but when he sat down to his favourite of rasher, beans and egg all he could do was shake his head. The eyes were willing but the stomach was saying no. Right now he ate a pear and said he was stuffed afterwards. It’s been a week since his bout of seizures but that combined with the infection means he’s eaten very little in the last seven days.

Sunday night was when I first noticed his high temperature. There was a time when high temperature would bring on a seizure but we think that time has passed. In bed that night he was roasting but not sweating nor were his hands cold to touch. I rolled him over and a few minutes later he’d cooled down so I thought little of it. But Monday he was bad all day and we kept him home from school. With this he was delighted but not so happy when Ms O’Se came around in the afternoon. For his temperature we had him on Ibruprofen and it seemed to take control. That afternoon the two of us went for a drive in the car, collected a parcel for Mummy and did some food shopping. It looked like he was on the mend. Tuesday morning though and he was very down, not eating and still running a temperature so we made a doctor’s appointment. 5pm was the earliest they could fit in the man.

At the doctors surgery Fred was very lethargic and feeling sorry for himself. Funnily enough, though we’ve been patients at the surgery since last summer this was the first time Dr Glancy was meeting Fred. At the Dingle Surgery Fred was on first name terms with all the staff; just shows how much things have improved. As Dr Glancy said...

“Nice to finally meet you Fred even though I feel I know you quite well. I’ve written you quite a few prescriptions in the last while.”

“Thank you,” Fred said through the pain.

“What’s the matter?” the doctor continued.

“My skin is roasted,” was Fred’s honest reply, “I have a temperature.”

Sure enough she checked him over and found his throat was blistered. In good sensible doctoring she didn’t prescribe anti-biotics and recommended we continue with the Ibruprofen. A lot of kids were presenting with bad throats and she continued that the best thing to do was keep an eye on him.

There isn’t a second in every day that we don’t...

As the week went on we kept Fred off school. He was very tired and took every chance he could to take a nap. Ms O’Se came around for his teaching hour but I don’t know if she got much out of him. His temperature evened out but his appetite didn’t return. Some days he might pick at something but by and large he’s been on starvation rations.

The sleeping did concern us and when he started complaining of a pain in his chest Lisa got very concerned. Fred said he could feel the battery coming on and it was hurting him. Unfortunately maybe the double jump last week was just too much. Possibly too, as his throat was sore, the extra pulse was making it worse. We talked about switching it back down a level and, even though that would entail a trip to Dublin, it would have to be done. Lisa spoke with Suzanne the VNS nurse, but she didn’t think his symptoms were related to the jump. By Thursday though Fred was very upset by the VNS pulse but after a good sleep that night he seemed to have put it behind him. I think that, maybe as he was now becoming aware of the sensation, with the higher pulse, the initial discomfort was just a side-effect, as was his Marlon Brando voice when it was first turned on.

We don’t know but the pain hasn’t been mentioned now in two days...

Yesterday for lunch I made him a white bread sandwich of rasher with lashings of mayonnaise and butter. The heart attack on a plate wouldn’t be his usual but I just wanted to get something into him. He looked surprised when I brought it in but devoured it saying “Don’t tell Mummy.” Of course Fred couldn’t keep it in and when Mummy came home the guilt got the better of him and he blurted out...

“Daddy gave me a white bread sandwich,”

Somehow I don’t think Fred has a career in espionage...

That was all he ate though for the rest of the day. For dinner I made his favourite creamy mushroom pasta but he turned his nose up at it...

“Maybe later,” he said.

Ruby had come home from school with four friends and Fred bucked up when he saw them. He was on strict instruction not to bother them, not that he was up for it anyway. The girls ate a big lunch and Fred hovered in the background, getting the odd stare from Ruby. For the rest of the evening they were in Ruby’s room getting ready for dinner. The ladies were celebrating mid-term by going out to a restaurant, very grown up of them. Fred was delighted to see them all dressed up before going out and approved of how they looked. With great pride I drove the five beauties to the door of the eatery and went home waiting for the text to come collect them. By nine they were all home, giggling and full of stories, Hannah, as always, worried about something. The days of boys taking preference for dates probably isn’t too far off but they’d want to be on top of their game to even get noticed by that gang of five. Proper order too, as Lisa would say.

This morning the girls came down for breakfast and Fred was delighted to hear they are staying another night. The comfort of having them around is great for him, even if he’s not allowed join in the fun. Jaden is due over this afternoon and that will be just perfect for the man. It’s been a tough week for him, no school, no appetite, no friends, sore throat, sore chest and being constantly tired.

It’s not easy being Fred.

 

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9Feb/140

A Tale of Two Halves

Fred is downstairs watching Scooby Doo. More staring at than watching as he is wrecked after a cluster of seizures yesterday. Day twenty, almost made the magical twenty-one day mark, better than day thirteen last time round.  It seems the entity that is epilepsy is doing a cycle of thirteen days followed by one in the low twenties. As long time observers of epilepsy it never ceases to amaze us how it seems to have a mind of its own. Despite our best efforts it always manages to beat us. That mind has a strong will too...yesterday we intervened with the Stesolid after number three in an effort to save Fred from a tough day but it came back to have its cut. Six more seizures our boy had to endure before he was left alone around 4pm.

Being the man he is Fred woke about 7pm, watched some Scooby Doo and alternated between Lisa and me, cuddling into us like a new born. By 10pm he wanted to go to bed and he slept well though he will need more rest today. As usual he wasn’t hungry for breakfast, saying through a raspy throat...”I’ll have that later.”

On Monday Lisa drove him home from school at the usual 1.15pm. I was in the kitchen making him soup for lunch when they drove up. Lisa had to help him out of the car and walk Fred into the house. He looked terrible, his face was almost green and his legs weren’t working. As Lisa walked him I fully expected the man to collapse in her arms. Apparently just as school finished the confusion had come on and the teachers took care of him until Lisa was on the scene. With her mother’s sense of concern Lisa was actually on the scene before the teacher’s knew it, she’d been watching the school and knew something was up by the movements of the staff. In fact Lisa had spent the whole morning outside of the school, though I had tried to convince her otherwise; she just knew...

Once on the couch we prepared Fred for the inevitable seizures that were coming. Put him in his pyjamas, get him to the toilet and then under a warm blanket, the usual routine. Lisa swiped him continuously with the magnet. When swiped the VNS will give out a thirty second pulse at .25amps more than it is set. So he is on .75amps and each swipe would give him a thirty second shot of 1mp. About every ten minutes is the advisable time frame. Remarkably after a snooze of twenty minutes or so Fred woke up, looking for lunch. The colour had returned to his face and he was a completely different boy from the one dragged in the door about half an hour earlier. Whether this had anything to do with the swiping we’ll never know but I’ve never Fred seen look so bad and not go into a cluster.

He tucked into a lunch of soup and a wrap. After downing the soup he looked for more so I gave him another bowl, without a wrap, one was enough. Fred complained but I said no...

“How about some toast?” He asked...

“No toast.”

“Aww that’s not fair”

“I’ll give you half a cracker,” I tried, trying not to crack under that pleading look.

“How about two halves?”

So I gave him two halves.

Afterwards he slept for the afternoon. A big, deep sleep and he only woke when Ruby came in from school. That night he went to bed a bit later than usual but still got a good night’s sleep under his belt. We kept him home on Tuesday, out of habit more than anything else and he had a great day of it. That is until Lisa broke the news that Ms O’Se was coming round for class in the afternoon.

“What? I don’t want Ms O’Se,” was the indignant reply.

Thus the war began. The entente cordiale between mother and son broke down into an escalation of hostilities on all fronts. Diplomatic lines of communication were severed. All sorts of threats were issued on both sides but there wasn’t any sign of a breakthrough despite a call to the UN Court of Arbitration. Eventually with the clock ticking down to all out war Fred played his trump card...

“I have the confusion,” he said, lying back on the couch.

“Really?” his mother replied.

“Yes, really Mum,” he said looking sad.

This always brings on a dilemma for us. Do we believe him and put the rest of the day on hold or do we call his bluff only for Fred to go into a seizure a short time later. Of course we have to believe him; we want Fred to be aware of his epilepsy and to tell of us of any warning signs so we can protect our man. As any eleven year old boy worth his salt will do though, he will try and get out of school work. Lisa and I asked him over and over if he was sure. Yes he was. Lisa said she’d text Ms O’Se but he better be telling the truth because we needed to trust him.

As I had a few jobs to do I left the two cuddled up on the couch. But when I came back about an hour later Fred was sitting up at the kitchen table with Ms O’Se, working hard at his homework...

“I thought you’d cancelled Ms O’Se” I said to Lisa...

“No, I just pretended to, to see what he’d say when she arrived, he went in without a bother.”

“Do you think he was fooling us?”

Lisa shrugged her shoulders as if to say who knows with Fred.  Who does? I went into the kitchen to put away the shopping and an alert Fred was almost sitting on Ms O’Se’s lap, ploughing through his homework. Shortly afterwards she left, they had done over an hour of work and she was really pleased with Fred. As I started to prepare dinner Fred appeared beside me...

“Dad?” he said, head down in a very contrite manner.

“Yes?”

“Ok, you got me, I lied about the confusion,” he said, head still down.

“Promise you won’t do it again?”

“I promise.”

We’ll see...

All week Fred had been counting the days down to the trip to Dublin. Thursday and we had a couple of appointments at Temple Street. One for putting Fred’s VNS up another notch and another with the child psychiatrist team who wanted to get a picture of Fred and his family for an educational report. We headed off at 9.30am, the car not so full as normal; we were attempting to do this in the one day. As Ruby is doing her ‘mocks’ we didn’t want to disturb her study plans by being away for a night. Much and all as we wanted to visit Inchicore this plan meant we wouldn’t be seeing Conor and Cathy either. Fred thought we might but Lisa and I said that it may not be possible this time round.

With the meeting on Thursday and Fred getting the confusion on Monday it was a stressful week for us.

What if Fred had a seizure before going up? That would mean cancelling the appointments and waiting another month for the psychiatrist team. Anything after Tuesday would have meant he wouldn’t have been alert enough for them. What he had one in the car on the way to Dublin, Thursday was day 18 and we’d definitely be in the danger zone. The only option then would have been to turn around and go home. What if he had one in the hospital? They wouldn’t have let him home, meaning a couple of nights in hospital and Ruby disrupted. I told Ruby in that case I’d drive home to be with her so she could get on with her exams, but that would mean leaving the others in Dublin. What if he had one on the way home? That would mean a trip down the motorway with Fred seizing in the back and we brought all medicines to cover that eventuality...

In the end we got to Temple Street in one piece. After lunch in the Basement Cafe we headed up to see Suzanne, the VNS nurse. After hearing how well he was doing and that we weren’t heading away for another two hours Suzanne proposed going up a double amount. Up from .75amps to 1.25amps. If he didn’t react well she could turn it back down again and she would stick around until 5pm in case we needed her. The double jump would mean we wouldn’t have to see her for another month and this would coordinate nicely with the psychiatrist’s plans for a number of monthly sessions.

Beep went the magic wand, Fred coughed but all was ok. Suzanne was pleased with his initial reaction and sent us on our way.

In the psychiatrist’s chair it was actually Lisa and I under the spotlight. She wanted to get the complete picture from day one and before. We had to go into our family histories, our own past and that was all before mentioning Fred. The usual tears were shed as we went through the happy birth to his first seizure at nine months and the subsequent years. Fred was playing games, probably also being observed by the two. Of course the inevitable confusion hit, what a surprise, and Lisa couldn’t swipe him, as it wasn’t advised after such a jump in output earlier. So Fred cuddled into his Mum while we went through his life story and how epilepsy has impacted on us. The hospital visits, the ambulance trips, the move to Tralee, the effect on Ruby and everything else. They got it all out of us, tears and all.

Remarkably Fred slept through the confusion. Once the meeting was over I ran off to get the car; we needed to get him comfortable and away from the hospital, the last thing we wanted was a couple of nights on the ward. Driving back around the corner I half expected to see Lisa with a crowd around her, helping Fred back inside. But no, the two were standing on the pavement waiting and we shot off into the Dublin evening. Lisa got Fred comfortable and soon he was in a deep sleep. As we drove down the quays Lisa texted Suzanne to tell her all was ok with the double jump. Driving through Inchicore the car almost automatically turned up to Conor and Cathy’s but we had to head for the south. The traffic was ok and once beyond the Red Cow roundabout it was plain sailing all the way to Tralee.

Fred woke up just as I pulled in the Mayfield service centre but wasn’t hungry for dinner. He did want popcorn though, for some reason, so I got him small bag. With coffees for the parents, popcorn for Fred we headed off to Ruby. As we drove I’d look in the rear view mirror from time to time to see Fred’s face looking out at the passing traffic. It’s one of those reassuring sights I love; he’s awake and taking in the world.

The next day, Friday we tried to get back to normal. Lisa took Ruby to Dingle and I drove Fred to school. Denise had been off for a while and Fred hadn’t seen her for about ten days. The two of us walked in but no sign of Denise. Then from behind us she walked in...

“Hi Denise!” Fred exclaimed.

“Hi Fred, I’ve missed you,” Denise answered with a big smile on her face. She has been through some tragedy recently and she looked really happy to see her friend.

“I missed you too,” Fred said, walking away with her, taking off his coat as he went.

It looked like the two were glad everything was getting back to normal.

As was I.

 

 

 

 

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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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