D’s knees.

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Anyone who has read my ramblings for a while might remember that this time last year, D was in hospital having plates fitted to his knees. The problem was that his legs were growing at an odd angle, which meant that the lower leg was growing outwards rather than straight – there is some long technical name for this, but I can not remember it, and even if I could, I probably wouldn’t be able to spell it!!!!!

Anyway, yesterday we were back to the hospital for an appointment with his orthopedic consultant. This was the third such appointment, the first about a month after the op, then six months, and now the full year. When they were fitted, we were told not to expect miracles, and that they could only stay in for 2 years, but they could but new ones in after that time if needed. Like all things medical, as parents, we do what we can for the long-term benefit of our kids, but watching D in hospital after the op was heartbreaking, as he was in pain and turmoil as he came to terms with basically learning how to walk again. We have always tried our best to be honest with our kids about things – apart from the things all parents lie about, Santa, tooth fairy etc, rather than giving half facts. I think we work on the idea that kids will absorb what that need and therefore its easier to talk in basic terms that invent something you are later going to have to back track on. D has therefore been well aware of the purpose of the pins, and the possibility they may not help, and the pain was for nothing, or they may give him the ability to move a little easier. Luckily the later has been the case.

When following behind him, it is obvious to see how much better he is walking. I do wonder if this is also part of the reason for his rapid growth spurt, that his posture is now better because he is standing straighter. When asked he says walking and running is much easier and therefore much more fun. All major positive points. As far as we are all concerned, the operation to fit the plates was a total success.

D convinced himself that because he felt his legs were better, the consultant would agree to removing the pins. While we also hoped for this to be the case we had to be practical, and work with the information we had been given, and that was that they may be in for two years. We tried to talk to D about this, so that his hopes weren’t built up too much, but he would not accept any other possible outcome to the appointment than the one he wanted. When asked that if he was told it would be reviewed in another six months, how would he feel, he said he would run out of the hospital – this may sound like the sort of empty threat many children give their parents when they don’t get their own way, but the day D was told he would be having the initial operation, he got in such a panic, that he bolted from the consulting room, through 5 sets of double doors, and made it outside, before I caught him – I wasn’t at all impressed with hospital security that a 5-year-old child could run for it like that and nobody stop them, but that’s another issue all together!

I spoke with his teacher to say he wouldn’t be in yesterday morning because of the appointment, but if things didn’t go as planned we may not be back at all that day. She was understanding.      As it happened, the usual hospital delays meant that it wasn’t worth putting him to school by the time we got back.

His Dad works right next to the hospital, and so took a long lunch and joined us – between us we should be able to stop him getting away!

After what seemed an age, playing table football, and Mario Kart, we finally got taken in – only half an hour late. The consultant looked at D’s knees and ummed and arred about them still being a little sticky outy – obviously a medical term!. D’s face was thunder. It was then decided to go for x-rays and see what the bones were doing. Another long wait. D really doesn’t like the x-ray machine as he has to stand really still while it moves around him, and still is something that is a totally unknown entity for him. He did really well though, and they got the picture first time. Then another wait to see the consultant again.

The human body is an amazing thing, I think we can all agree on that. Technology is also amazing. Put the two together, and being able to see the x-rays on the screen, comparing the previous ones is just brilliant. When the images of D’s knees were displayed next to each other, the difference was huge. His legs aren’t perfectly straight, but they are near as damn it there. One look at these, and D got the answer he was looking for, as we were told they may as well be removed, D punched the air at being told this – should a child really be excited about surgery? Not sure about that, but it will be one less thing hanging over him. We were told that because it isn’t urgent surgery, there could be a few months wait, but D is fine with that because he knows this chapter is drawing to its conclusion. Depending how well he copes, it could just be a day case, as he wont be needing the intense physio afterwards. Not surprisingly, D found fault with that, as being in hospital is apparently fun because you get to play video games all day!!!!

It is now just a case of waiting for the letter to arrive with a date. Hopefully it wont be too close to the holidays, as not being able to go swimming would really upset him. He says if it could be mid-August that would be great as it means he would miss the beginning of the next school year – he is a devious little so and so!

For now we play the waiting game, but have a happy wee man, all be it just slightly gross.     At bed time last night, he asked if it would be ok to tell his surgeon that he wants to keep the pins as a souvenir!!    Only a 7-year-old boy!!!    Or should I say, only MY 7-year-old boy!!!

If you want read about his time in hospital, here are the links to those posts.

https://jas2jar.wordpress.com/2014/02/23/preparing-for-hospital/

https://jas2jar.wordpress.com/2014/02/25/hospital-admittance/

https://jas2jar.wordpress.com/2014/02/27/post-op-aspie-style/

Super Epic Dan

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The boys have always loved technology. Like many children, they could and do, know more about how the computer, tablets, etc than I ever will. It is important that they feel comfortable in this area as, it is their future. When I was at school, there was one computer in the school, and that was in the maths department, and only the teachers got to use it. The boys have technology classes at school, and are more comfortable with a keyboard and mouse, than with a pan and paper.

M is more your observer, and spends far too many hours watching Stampy and Squid – if you know any child who likes Minecraft, you will know who these guys are! However, by watching these he has become quite the expert, and when playing, he has quite amazing ideas, D on the other hand is a doer. The problem there though, is that he is also a perfectionist, which means he suffers a lot when he doesn’t achieve to the standards he expects to. We have had many meltdowns as a result of dying in a game, and he just cant control his emotional side, and doesn’t understand that it’s just a game. It is hard for him, as he loves the games and is very good with them. It is lovely to see when he just gets stuck and calls on M to help him, because of his superior knowledge. D also likes to watch the gamers on YouTube, but not to the obsesses level that M does.

He decided a while ago, that he would like to become a gamer as a job. I think he sees it as an easy way to make a living, and we didn’t take it that seriously. Then he started pretending to recording when he was playing. We had to be quiet while he talked his way through what he was doing. He loved doing it, and it was great to see the fun he was having. Then when he started playing online on his X-box, he would be giving advice to people he was playing with. He seemed totally at ease doing it. He continued saying he wanted to be a YouTuber, or rather when he was talking, it was when he becomes one.

Hubby decided to let him have a go recording on his tablet. He was in his element, and to be honest he was quite good. Then of course the nagging started to publish it online. Hubby looked into it, and it seemed simple to do.

Super Epic Dan was then born!

He has now published a few Vlogs about the life of a young Aspergers boy. He’s also done a couple of videos about how to play Minecraft. He has had far more views than anyone was expecting and is totally made up about it. He has even had his teacher at school making comment on it about his excellent IT skills.

I am really proud of him. I am also a little worried, and will be monitoring what he is saying and posting. I suppose I am nervous that he might get himself into trouble – after all the nastiness I had when I first started blogging. He isn’t known for his tact so he might need to be reined in occasionally. For now though he is loving it, and doing brilliantly. He’s already asked for editing software for his birthday!

If you’d like to have a look at his site, it is https://www.youtube.com/channel/UClzofxrL2x3aBvkvbK9jQ3w . I’m not asking you to look, but I’m having a mega proud Mummy moment.

Happy Anniversary Hubby.

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Today is our 12th Wedding anniversary. Time flies as they say. During this time we have had ups and downs, but always come out the other side smiling – you have to!

Hubby and I had an unconventional meeting – or it was at the time, these days far more common. We met online – so yes, it is true about all the strange people you meet on the internet!! We were just in a forum chat room, being the Geeks we are, talking about Star Trek, as you do, nothing too unusual. We then often talked, until we looked for each other, finding more and more in common – a love of ice-hockey, and all thing Canadian. We became online friends, but with him living in the North of Scotland, and me in the South of England, it was never going to be more than that, and to be honest I don’t think either of us were thinking it would be. This was Easter time in 2002, and by the Summer, we had not only met up, but got engaged! Some times, no matter what the obstacles, you have to just go for things, and considering both of us are quite reserved people, we must have both known it just had to be done. The cost of a long distant relationship wasn’t good – I think we earned a lot of frequent flyer points, until I put my house on the market, handed in my notice, and told my Mum she was moving to Aberdeen! Hubby meanwhile was planning our wedding – all I had to do was agree – or not, what he was organising. My Mother-in-law to be had been a seamstress, so she made my dress, and it was beautiful. Hubby was house hunting, as I looked for properties online – I have to say, the house we finally bought, was one I found from 550 miles away, and I didn’t actually see it in person until we had bought it! So by the end of 2002 we were living in Aberdeenshire. I started work, managing a bakery & coffee shop in the January of 2003, and in the February we were married. It was definitely what you would call a whirlwind romance, and many people were quite negative because of how we had met. Our response then, and still is, that the way we met, meant we became friends first, we took time to get to know each other. Yes, we didn’t do the dating, that traditional relationships go through, but putting it bluntly, we knew we were compatible before the bedroom became involved, and too many relationships fail because that part of it takes priority over who the people really are.

We went to Toronto for our honeymoon, because Hubby had said when we were just friends, that he would take me to see the Maple Leafs, and he kept his promise. To say it was cold was an understatement, and watching the water freeze over Niagara Falls was pretty amazing to see. It was an experience, and we have promised the boys we will take them there at some point – we might have to save up for a long time!!

Thank you for being there for me Old Man – that isn’t so old (what D calls him!), its been a journey, and there is much further to go.

hubby

February Mid-term.

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The boys have been having their February mid-term break this last few days. It is only a few weeks since they went back in January, and yet, they were more than ready for it.

Every year that I have been a school attending Mum, there has been playground comment about this holiday, and how strange it actually is. For me, growing up, the February holiday was always a straight week, and from what I understand from friends in England, there, it still is. Here however, it is a mis-match of days lumped together. Last week, Thursday and Friday were holiday days, Monday of this week, was an occasional day, and Tuesday, Wednesday, were in-service (teacher training) days – I am sure if that’s not how it broke down, I will be corrected! What most parents seem to comment on, is that if they are adding the days, to give the kids 5 days off, then why don’t they do it Monday to Friday, to give people a chance to use the week – although I have heard of a few people who are away, and therefore their kids were taken out of school, either last week, of this.     It just seems very strange to split it over the two weeks.

As with all breaks in routine, it can be hard on the boys, but to have 2 weeks that aren’t right because they aren’t at school for either full week, kind of makes its even harder for them to cope. We have therefore had some amazing meltdowns and tantrums – I use both phrases as I am sure not all episodes have been autism related.

M seems to have coped better than D this time round. I do wonder if it is because he was already in such a bad place before he broke up, that he didn’t have as far to go to be at his usual holiday gloom, or if he genuinely has coped better. It might sound terrible but he has spent a great deal of time on the computer, watching the minecraft videos he loves. It makes him happy, and happy kids make happy Mum. He can lose himself when watching them, and he seems to be in a nice place.

D has been far more agitated. He has had some purely delightful, loving moments, and some utterly horrendous nasty times, there has been little in between with his behaviour. He has played a lot on the X-bow. Again, if he has something that he is loving and keeping him content why rock it?!

Now, I am not saying all they did all the time they were off was sat in front of screens, but when they are feeling happy when doing that, I will let them for probably more than is advisable.

Hubby took a few days off, so spent a lot of time with them. The weather has been cool but bright, so the trampoline got its first few work outs for the year – it does amaze me how they can bounce for hour upon hour, as I feel sick just trying to get on there! They also took a walk to the community woodland in the town. It still doesn’t look much, but the children have an affinity with it, as the school has been involved with the tree planting over the past couple of years, so it is something they feel part of, and they want to see their trees growing and prospering.

On Tuesday, being pancake day, the boys helped me in the kitchen as we prepared things. They had great fun tossing them, although, I think we lost about half  as they missed the pan on the return – I am sure the birds were grateful for their extra special meal that day!! When talking about what we would give up for lent, there were the usual things banded about, chocolate, crisps, fizzy juice, but D’s suggestion made us all laugh when he said he wanted to give up school!

D and I spent some time looking at our Chinese cookbooks, deciding what to make for Chinese New Year, and he asked if we could make fortune cookies for him to take to school. We had a great laugh thinking up fortunes, and they were all ones he came up with, although I had to write them for him as he couldn’t write small enough. I just hope his teacher thinks they’re funny, as there were a few about things like not doing homework!!! Anyway, both of us had rather sore fingers after trying to fold the hot cookies. I am not sure how edible they will be, as I think they weren’t really thin enough, but the taster bits were quite yummy!

Today is back to school day. Or rather, today was meant to be back to school day. M was complaining of a sore tummy at bedtime last night, and I just assumed he was trying to get out of going back to school, that was until about 2am, when he came through still complaining, and then just managed to get to the bathroom before being sick. That is therefore him off for the rest of the week. D, as you can imagine, wasn’t impressed when he learned that M wasn’t going to school, and he was, but after a little bit of arguing, he went in.

There are now only a few weeks until the Easter holidays. In fact, just enough time for them to get their heads back in the right place to learn, when they start the unwind again. Until then, the routine of school make the boys calmer, even if not happier!!!!

Happy Valentines Day.

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Happy Valentines Day!

You may be a total romantic, or you may be someone who thinks it’s all commercial tripe, as we should be able to tell our loved ones any time how we feel about them. Either way, it is very difficult to escape the hype that surrounds the day.

As with many other occasions where you are expected to exchange gifts, I think homemade is far more heart-felt than something you just grabbed off the supermarket shelf on the way past.

Today I am going to share with you a couple of recipes that are perfect for today! One is naughty for the waistline – chocolate fudge, and the other is a Weight Watchers take on Strawberry cheesecake, that can be made with things that most of us would have in the house anyway.

The fudge recipe I found on a brilliant site called Slow Cooker Central – http://www.slowcookercentral.com/ As the name suggests, it is a place to find all types of ideas of things to do in your slow cooker, it is really more than for making casseroles! I was very dubious the first time I moved out of my slow cooking comfort zone, and tried something new, but once I got my head around the idea, the piece of equipment on my work surface gained a new-found, much busier life!!!

This recipe has to be the easiest fudge recipe I have ever seen, as there is no constantly checking the thermometer, and arm breaking beating, but instead its throw it in and stir it every now and again over a 2 hour period. It couldn’t be simpler.

You will need,
1 tin condensed milk
500g chocolate – whichever you like, I use half dark, half milk
1 tablespoon butter
1 tablespoon vanilla extract.

Just put everything into the slow cooker, on a low setting, without the lid.
Stir every 15 minutes for 2 hours. It does crust over between stirs, but that melts back in each time. I use a spatula to stir so I am getting the edges and base of the bowl.
Pour into a lined tin, and allow to set.

What is more romantic than home-made fudge?

I know, cheesecake!

This recipe is a great Weight Watchers one, and it is loved by the kids as well as the adults!

You will need –

12 oaty digestive biscuits
50g low-fat spread – melted
10g leaf gelatine
280ml skimmed milk
2 packets of strawberry whip – I use sugar-free Angel delight
200g plain yoghurt

Line a 15cm loose bottom tin with cling film.
Smash up the biscuits, and stir in the melted butter. Press firmly into the tin.
Allow to set for about an hour.
Soak the gelatine in 2 tabs of the milk. When soft, heat until melted.
Whisk the whip with the remaining milk, and yoghurt. Add the melted gelatine.
Whisk until well combined.
Pour over the biscuit base and allow to set for about 2 hours.
Decorate with fresh strawberries.

Again really easy with an impressive result.

If you are having a fish supper out of the paper for your Valentines tea, what better way to impress your loved one than bringing out the “Cheesecake” for dessert! I think you’ll definitely earn points for that!

Have a great time what ever you are doing!!!!!

Butter on the bread.

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I’m feeling pretty rough today. It came on yesterday, and I am just full of head cold. It’s not really surprising, as both boys have had time off school in the past couple of weeks with various bugs that have been doing the rounds. I think with my lack of sleep over the weekend, my body gave in, and let the germs run riot, leaving me feeling pretty crud!

It is only when you are out of action that I think your worth is really acknowledged, and you yourself realise all that you do, without thinking, and without need or desire for praise – although, it would be nice for your efforts to be noticed just once in a while. It is though as they say, its only when you don’t do something that it gets noticed!

Last night as soon as Hubby got home from work, I went to wallow in a hot bath. The whole time I am in there, all, I can hear is bickering, then there is a steady parade of people in and out of the bathroom, to complain about what the other one is doing – don’t tell me I should lock the door, as locked doors panic M to the stage of total meltdown.

As I got out the bath, I hear goings on downstairs, and D is leaving home – again. He got as far as opening the front door, stark naked, before Hubby managed to grab him and get him back into the house. Not letting him escape though leads to all kinds of verbal abuse, about how much he hates us all – a phrase he has been using a lot recently.

Eventually they both get to bed, and settled. I then decided I should tidy up downstairs and make M’s lunch bag for today. Hubby, was lovely, and said he would do it, and I was to go to bed. He then comes up to check what goes into a lunch bag, then again to ask where the bread is – somehow they had managed to eat all of the rolls I had made with the casserole they had for tea! Off he goes to complete his task, and I hear cussing and swearing. I go down, thinking something is wrong, only to find, that he was murdering the loaf of bread, trying to slice it!!!!!

Today, Hubby is working from home, so he said he would take the boys up to the school to allow me to have a rest. Great I thought, a lie in is just what I need. Ha ha! D decided he was too ill to go to school, and had the most amazing row with his Dad, screaming and yelling about how much he hated him – yes, too ill for school, but plenty of energy to have a tantrum. He refused to put clothes on, and I had to dress him. He refused to pack his bag, I did it. He refused to put his coat on, I did it for him. Hubby said he would have to talk to D’s teacher, but this just sent him even further into despair. There had been a situation at school yesterday where one boy had kicked him – and was chastised by loosing golden time, and another incident where a group of them were in the toilets washing hands before lunchtime, and one child jumped out on another, the child reported the incident and all the boys were given a warning, including D. He was very upset by this, as he’s never been in trouble at school before, but says he doesn’t want to talk to the teacher about what happened. His lack of desire to talk to the teacher he loves and trusts above all else, is worrying because it either means he was doing something he shouldn’t have been doing, or he is frightened of the child involved and doesn’t want to rock the boat – this child has bullied him in the past. Either way, it is no surprise how volatile he actually is at the moment – thank goodness today is the last day before the mid-term break.   Anyway, I managed to get him out of the house and Hubby said by the time he got to school he had calmed, so he looked his usual petrified self by the time the bell went.

So I didn’t get much of a lay in, but it was good not to have to go out this morning where is was so cold!!!

I think I have realised, that while most of the time I get on with my lot without complaining too much, I should occasionally stick my head up and say “What about me!”. We all have our positions within any unit, and a family is no different, although the lines are far more fluid than in many other areas of our life. And this brings me to explaining the title of this entry. I am saying, that we as a family, are like a sandwich, the bread is a major factor, as is the filling, but it is the invisible butter that moistens it, and sticks it all together. You don’t always notice it, and sometimes wonder what it’s actually achieving, but take it away, and it’s just not right, something very important is missing.

Nightmares!

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M has never been a good sleeper. I could probably count the number of times he has had a full night sleep on one hand. We have tried everything we can think of and many things that have been suggested in the hope of him staying asleep until what I would class a sensible time.

We were referred to Sleep Scotland, a charity that gives advice about sleeping problems – http://www.sleepscotland.org/. After waiting for almost 2 years, a couple of weeks ago we finally received a phone call consultation – they are based in the central belt, and staffed by volunteers, so they are not countrywide. The lady I spoke to was lovely, and listened while I explained where we were at, and the things we had tried. I think we stumped her, as most of the things she was suggesting, we either already do, or have tried to no avail. It was however useful to talk about it, and realise that while the books say at his age he should be getting a certain amount of sleep, it may just be that his body only requires the 6 hours he comfortably has. It was quite reassuring to have someone tell us we were doing the right things, and not to worry unduly about it.

We were feeling pretty comfortable after this conversation about him not suffering from lack of sleep, and while we would still work to ensure he was resting, it wasn’t a major problem.

Then his pattern changed totally. He started getting nightmares. He became frightened about everything. He wanted a torch in his bed, so that if he woke up in the night, he could check everything was alright. He would be so restless, that in the morning his duvet was almost tied in a knot and all his cuddly buddies were flung around the room. He asked if he could sleep in with us – he is 9 years old, so no longer an option, like it was when he was little and frightened. I would find soggy pyjamas in the laundry basket, where he was having accidents in the night. He was a real state. As with all situations like this, it is heartbreaking to see your baby hurting, and not being able to take the pain away for them.

We decided to get him a new bed – he had a midi-sleeper, and we got him a cabin bed, so he was lower, and therefore he could see his brother, and know he wasn’t alone at night. He was really happy about this idea. (Even better was friends of ours were looking for a midi-sleeper, so we were able to recycle the old bed!). The first night he was into the bed, he asked for cuddles as he was settling down. When both the boys were little we would get into bed with them for cuddles, and this continued a little longer for D as he had, and still does have difficulty in settling down at night, so firm cuddles gave him the reassurance he needed. It was now M’s turn for this practice, as it didn’t just happen the first night, but every night he was wanted someone there with him. This seemed to work for a few days. He was calm and settled going to sleep.

He then started talking about himself in the third person, saying “M is scared” or “M is frightened”, but when asked what he is frightened of, he can’t point to anything specific. It seems everything is worrying him. We have racked our brains to think what he has seen or heard to have worked him up so much. He does spend copious hours watching videos about Minecraft on YouTube, but we only let him watch the main players in the gaming video genre, Stampy, and Squid, because they don’t swear – although the number of times they say “Oh my God” is rather annoying. The computer in the main living room, so it’s not like he gets the chance to watch anything unsupervised. I can only assume he has somehow watched something that has frightened him to the point of it filling not just his waking mind, but also his sleeping.

At the weekend, the situation really hit a low point. Hubby was dead to the world, and I was just settling down about midnight Saturday, when in comes a rambling M. He was physically shaking, and mumbling quite incoherently. I sat up in the bed and told him to come and sit with me, I couldn’t make out a word he was saying, but he was very agitated. I put my arms around him to comfort him and he fell backwards taking me with him, pinning me to the bed, and he was sound asleep. I couldn’t move, either him or myself, and so I saw the night out with a M blanket. When he woke, he was very confused as to where he was and how he got there. It appears he must have been sleep walking, as he has no recognition of coming through, let alone the discomfort he caused me by squashing me all night!!!

Then Sunday night he didn’t want to be left alone at bedtime, and it took me almost an hour to get out of his bed – usually he falls asleep very quickly. All he kept repeating was that M was frightened. Finally I managed to get to my bed. He then appears about 3.45am, totally naked saying he didn’t know where his pyjamas had gone! He crawled in between me and hubby, threw his arms around me and was snoring instantly. This morning however, I had to change our bed as it was soaked through – the boys have mattress protectors on, I think I might have to invest in one for our bed!

During the daytime, he will tell us how frightened he is and how scary the world is. So many things just seem to be worrying him. He has never been enthusiastic about going to school, but it seems to have got so much worse with trying to get him to go. He keeps telling me he needs a day off to have Mummy time – I wish it was as easy as giving him a day off to clear his head and then he would be fine, but it isn’t, so off to school he goes. He hasn’t said there is any problems – other than the usual ones of lack of support, as school, and his teacher hasn’t communicated that he is having additional problems, so we can’t pinpoint this as a reason for his distress. Hubby and I think we will make an appointment to go in and see the school, just to make sure there isn’t something we haven’t been made aware of.

It is almost the February mid-term break – 2 days this week and 3 next, so we will try to have some fun time, so put some happy thoughts into his head. In the mean time, I think I need to be settling down at the same time as the boys of an evening if I keep having to be alert at times nobody should be seeing!!!