A typical day?...

So, I thought I'd write about a 'normal' day. Well a normalish day, as no day is ever the same as the next, but it gives you an idea.

So this morning was transition day across most of the UK for year 6 children transitioning to secondary school, so while Murray got Imogen ready and took her to school I went with Jed to his new school to drop him off. As with a number of year 6 boys Jed was full of bravado about not being nervous at all and that everything was fine, although this totally belied the fact that everything else was wrong and the smallest thing got him wound up! But I am sure this was happening in many homes with a year six pupil this sunny morning!

This all went smoothly and I walked back up the road thinking that I would have a few minutes before a meeting I had in town, when I realised that both of our cars were still parked outside the house. Now this was 8.50, school starts at 8.45 and is a 15 minute car journey, so I knew that some thing had happened that caused Murray and Immi to still be at home.

Going in back about an hour, Imogen had had a seizure at about 8am. She had woken up in a good mood, willingly started to get herself  dressed, and we had gone down for breakfast. While in the kitchen getting her breakfast ready she had gone into a seizure and fallen, losing bladder control.  She recovered, and I had left with her sat at the table ready for breakfast.  Unfortunately, there are post seizure symptoms that we often don't see or hear about. Sufferers will often get tired or get a headache, or as Imogen often does, display hyperactive behaviour, which is the body's way of compensating tiredness and trying to stay stimulated. It can also cause a change in behaviour and a previously calm, friendly person can suddenly become sullen, angry and frustrated.  
Today, was typical of this and sadly, the friendly, compliant Imogen disappeared and in her place we were left with a tired distracted, angry child who did not want her breakfast.  Murray tried to cajole her to eat, knowing that she would need the energy, and she made a deal that she would eat if he wasn't watching, however after two failed attempts of leaving her to see if she would eat, he started to worry about how to get her to school. She would not eat, take her tablets, clean her teeth or do anything. By the time I walked in she was screaming at her Dad, 'I am NOT going anywhere. I am NOT eating. I hate you!' And Murray was at a loss of any more strategies and getting more and more frustrated himself.
I tried reasoning with her, to no avail, I tried calling her school teaching assistant to see if she could talk her round. All that did was to cause her to scream down the phone 'go away! I am not going to school!'  In the end I managed to give her a hug, get her to eat a fat bomb (a high fat, low carb snack from the ketogenic diet) and get her into the car by telling her she didn't need to talk to her Dad!

I closed the door and ran to the phone as I had to phone the hospital and get her an emergency appointment in the fracture clinic as she broke her wrist a few weeks ago and it was giving her so much pain again that the school had called. (She has a really high pain threshold too, so it must have been bad!). They made me an appointment for 2pm, I was supposed to pick up Jed at 2.30 so I called Murray and had another logistical conversation then ran into town for my meeting with the council about an arts festival I am helping to organise.
The meeting over ran and so I made my apologies just after the published finishing time and crept out, yomped back home, jumped in my car to meet a friend for an hour whose daughter also has additional needs. After, empathising with each other for an hour, I picked up Immi from school and drove to the hospital.  

The hospital was very efficient and the doctor decided we should have another X-ray to check the break, all went well; I only had to hold her arm in the correct position for one shot and we only had to retake once! We went back round to the waiting room to see the doctor again and Imogen was playing with a dolls house next to a young boy. Suddenly she went into a seizure, obviously shocking the lad and his carer. I would normally stop and explain to any onlookers to try to dissipate  any fear, but this time I didn't have a chance.  We went to the toilet where I discovered she had wet again and unfortunately the pad had not been enough. Normally this would be ok as we would have spare with us, but because there is a bag that stays at school I didn't have any spare.  I faced a dilemma, do I leave her in the toilet alone and run to the car or what? Eventually I asked a fellow parent to let the nurse know if they called for her, and ran to the car.  As I ran, I saw a nurse and she offered to stay with Immi. I reached the car and went through her school bag, realising we had no spare clothes, knickers or pads with us! Arrgggh! What now?
 I ran back to the toilet and asked the nurse if she could help. She said she would go and ask. A couple of minutes later she returned empty handed but saying that someone had gone to the ward to find something. Another 10 mins and a nurse arrived with knickers and a huge pad plus a special needs nappy. The knickers and pad seemed the lesser of two evils so I put those on Immi who did not cope well. With cries of 'this is so rubbish! This pad is too big and I can't wear this!'  And me whispering through tight lips 'it's only for 20 minutes Imogen, as soon as we get home you can change' and secretly praying that they wouldn't say that she needed a cast, we went back into the waiting room and thankfully quickly back into the doctor's office.
He informed us that the break was definitely healed and that the pain was from the dystonia and that we could go - phew!
So finally we are sat on my bed (Immi sat on a protective mat!) watching a DVD, recovering from a 'normal' day.  We still haven't had dinner, I wonder what spills and thrills that will entail?!...

Update....5.50pm just finished changing Immi again and cleaning up the kitchen floor from another seizure. Hey ho! 
But please don't feel sorry, just give thanks for good health, good relationships and good provision in the UK. We are so blessed.

Overwhelmed with love

This week has been an interesting one, full of ups and downs. Points when I have struggled to keep going, stories of things happening in people's lives nearby that are just awful. Worries of letting down    the 'older sibling' , and have we done the right thing in school transition, some frustrating news and general busyness.  But then love broke in.

Two major things have impacted me positively this week. The first is the love we have been shown.  Many of you know we have been raising money for a service dog for Imogen from Service dogs Europe and money has been steadily coming in from many generous people. (If that was you, thank you soooo much!). However, my sister decided to step in. She's the sort who wouldn't necessarily stick up for herself, but would fight with all her might for family and friends.  She found a new organisation called crowdwish and placed her wish, for the money to get Imogen the dog!


Crowdwish are amazing; every 24hours, the wish that is at the top of the poll they try to action in some imaginative way.  Have a look at their site www.crowdwish.com to see all sorts of different wishes they have actioned.  They came out of a conversation of some friends at a pub and I reckon they could start a revolution!

Over a few days the votes built up and then last week, on the 8th May, the wish won!  We wondered what they would do, not expecting a huge lot, as they tend to try to grant wishes through lobbying, raising awareness etc rather than giving money, but they totally excelled themselves collecting the €700 needed to take us up to the €5000!  Now we are able to start the ball rolling with the service dog!  The biggest lesson for me though, wasn't the raising of the funds, but it was the overwhelming love of  so many. Firstly, my sister, for making the wish, then all the people voting and finally the care and generosity of people that we have never even met raising those needed funds.  We live in community for a reason.  So often I find myself drawing back and being independent.  I don't know where that comes from but I find it easy to withdraw and hard to accept love and help.  It hit me hard this week that there is a reason we are set in families and communities. I also lead a church, this should be the best model of love in community available, but sadly so often it isn't. And it won't be until we learn both how to give love and also how to accept love, then this may happen.

I said that there were two things that hit me this week.  The other also involves my sister.  She has worn glasses since she was 5 and had glandular fever in her teens which meant that she has gone through bouts of ME since.
  As a Christian, and as a church leader I am supposed to believe in Gods healing.  I have found myself struggling though.  In principle I believe, but with a husband who lost a sister to cancer in his teens, and a daughter who battles daily, I struggle.  I have never witnessed a physical, no arguments healing.
Anyway, about 3 months ago, after church one day someone prayed for my sister and she woke up the next morning changed.  The ME had disappeared, she had energy and was able to do things she hadn't done for years.  This, to me, was great news, but still it was a very subjective healing, how could the effects of ME be measured. Maybe it is my background in science, but I do struggle with the need for the empirical.  This week though had blown me away.
Since the prayer, my sister's ME seemed better, but she starting having headaches. Finally this week she went to the opticians and the news was very unexpected.  It seems that her headaches are due to the fact that her eyes have returned to 20/20 vision and wearing her glasses which are no longer suitable was causing the headaches!! This piece of news has also stuck me this week.

Love and power mixed together.  I want to follow that God.

Keto craziness

It's been a while since I have written, and there are so many things that have happened over the last few months that I will write about in the next few blogs, but this one is about the craziness that is our lives at the moment as we enter the world of the ketogenic diet.

Imogen has had epilepsy now for over 6years and we have tried every drug available (as far as I am aware) and many combinations of drugs to no avail. I can't remember where we first heard of the ketogenic diet, but somewhere along the line it entered our thinking. We are very blessed in this area that we have had a dietician, Marian who was funded to enable children like Imogen to go on this diet. Sadly this funding has just ended so we were the last ones to sneak in at the end.  

Broccoli and hotdog quiche, spinach fried in butter and cream, lemon cheese ball and coconut mik.

So what is the diet? I hear you cry! Well, the theory as far as I can tell is that most people metabolise carbohydrate to give energy! but it has been found that if we cause the body to metabolise fats instead a by-product of this is something called ketones (don't ask me what they are!) but it has been found that raised ketones prevent can prevent seizures, so this is the what we are doing at the moment with Imogen.

I have to say I hadn't quite grasped how time consuming it would be. Every meal I have to work out the fat, protein and carbohydrate content of each item for the amount being used and make sure they balance properly. Last week Imogen's ketones weren't raising very well so now she is on 25g of carbohydrate a day. (Next time you eat your packet of crisps, chocolate biscuit or McDonalds just have a look at the carb content! She won't be eating any of those any time soon!) 
Thankfully there are a few items to help; a useful computer programme that will work out the levels for you once you have input the information, something called ketocal which is a powder that is very high fat that can be used in pizza base, muffins and things like that, and a ketocal drink that we can make smoothies out of.  Thankfully Imogen likes all these items which is making life easier.
Today her ketones where up a bit and this was the first seizure free day for a loooong time. I'm really hoping there are many more to come!

New labels...this time they're mine.

This week I think I am experiencing a little of what Imogen goes through daily.  I am on the induction fortnight at St John's College, Nottingham where I am about to embark on Stage 2 of a Masters in Theology.
I wasn't planning on taking the Masters, I was planning on finishing off my diploma, but due to a number of different validation issues, my past work was examined and, although the faculty thought it would be a large jump up, they invited me to do the Masters course.
I am now labelled (with nearly as many labels as Imogen!) I am an Advanced Standing, Part-time, Independent, Stage two, Masters of Theology Student and I'm not sure I am more than my labels - more like drowning under them!

I am learning a new vocabulary, meeting new theologians, learning how to critically analyse, synthesise and evaluate arguements, how to use the APA referrencing system, how to skim, scan and highlight and realising I don't know nearly enough about the classics or Church History!  There seem to be huge gaps in my knowledge of which I am not sure I can plug in the time that I have.  I am using all my concentration; reading sentences repeatedly and still struggling to make sense of them.  I compose my best synopsis and it sounds childlike and silly next to the example given by another student.  Given the task of using footnotes to find sources online, I fail to use the correct title and can't find anything;  another student comes to my aid.  Is this how Imogen feels each day going into school?  Is she madly treading water; desparately trying to keep her head up above the surface? If this is how she has felt daily for the last 5 years of school no wonder she has little motivation for it.  
Thankful for the moment of empathy, but I am going to have to learn fast or I will drown!

The irony of this is that I am working in order to simply get another label!! Or am I?  What I really am hoping is that along the way I will have opportunities to wrestle with God in the areas of my theology that have been knocked out of place since Imogen became unwell.  
I felt like my theology was pretty sound, like a healthy spine and then suddenly something in life happens to challenge that, like a disc being displaced.  And like a slipped disc it brings pain and fear(and also doubt).  This is my opportunity to realign it all again.  
I sincerely hope this is about more than my labels!

It's the thought that counts - or is it?

There was a crisis in our home last night!  Jed was going for a shower, he had handed his watch to Murray who had put it on the cabinet in the bathroom.  After his shower we heard a minor meltdown coming form upstairs, it was Jed and he couldn't find his watch.  Thus followed a conversation which became a little heated where one party explained where they had put it and the other saying they it must have been moved.  Jed wouldn't even let me flush the toilet because he was a little concerned it had fallen in!  he really had no idea where it had gone.

By this point Imogen had been in bed for about half an hour, we had people in our living room waiting to start a meeting, a pre teen feeling very stressed and no idea where the watch had gone.  We left our visitors downstairs and were all looking around everywhere we could think of upstairs until suddenly, Murray burst out of the bathroom and into Imogen's room, turning the light on as he flew in.
I thought she had been asleep but oh no!  We found her sitting in her bed with the sellotape and paper, wrapping Jed's watch up to give to him as a present!!  I have to admit I had to squash down a laugh and try very hard not to send mixed messages as I told her it wasn't acceptable to take other people's things even if you were going to give them back!!

It was then we realised this is something we need to address as this is not the first time.  A couple of weekends ago we had a weekend when we went away as a whole church, it was a great time of fun and time together and we had an excellent speaker who is also an author.  He brought some of his books with him incase anyone wanted to buy them.  It was also the weekend of Father's Day and on Father's day morning unbeknown to me, Murray was presented with a messily wrapped up bundle which contained the two of the books.  Later it was revealed to me that Imogen had taken the books and went to one of our friends (also a Mum!) and asked her to help wrap them.  She had been asked where she got them from, if Mummy knew and if she had paid.  Imogen happily answered, off the table, no, she hadn't paid and Mummy and Daddy weren't to know - it was a secret!!  My friend asked her if she should pay for them, Imogen shrugged her shoulders and replied 'If you want to!'  We of course rectified the payment situation after receiving the gift!  I think there is a bit of irony in the name of one of the books....

We definitely have a bit of work to do here!!  They say it is the thought that counts - hmmm not sure the outworking of that is meant to be quite so literal!

Animal rescue!

About a year ago I found the phone off the hook and a leaflet next to it.  The leaflet had a picture of a snow leopard on the front and said in bold letters 'Help save the snow leopard'.  I recognised the leaflet as a few days before Imogen had picked it off the floor as it fell out of a magazine I was reading and had asked me what it said.  I had made her work it out and she had kept it safe in her bag since then.
Inside there was a phone number to call and become a sponsor of the WWF to give £12 a month to help save the cute creature on the front.

 I picked up the phone and was glad to hear that it was dead at the other end sensing that at some point in the recent past it had been connected to a premium rate line!

I took the leaflet into Imogen's room.  'Immi, did you call the phone number on this leaflet?' 
All I got was a sheepish look.  'Immi, I need an answer, did you call the number?'
A nod this time.
'Did someone answer?'
Another nod.
'Was it a man or a lady?' I asked, trying to draw her out.
'A man' she said.
'What did he say?'
With relief I heard 'He told me I should call back when I am older.  Mummy, when you are an adult you can do what you want can't you?'
'Kind of,' I replied
'You're an adult when you are 18 aren't you?'
'Yes.'
I walk off with the leaflet, rip it in half and put it in the bin. 

End of scene one

Jump with me now 12 months to just a couple of weeks ago.  Imogen's room looked like a bomb had gone off and so Murray braved the room and went to sort out and throw away random empty cereal packets, inner tubes from kitchen roll, yogurt pots etc  While he was there he found the leaflet, it was carefully sellotaped back together!  He went to put in into the bin bag that he was brandishing, but Immi caught him in the act (again it would seem!) 
'No Daddy, don't throw that away!' she shouted 'I need that for when I'm eighteen!'

I don't know what I find most amazing.  Is it that she fished the leaflet out and stuck it together?  Is it that she remembered for over a year that she is calling them when she is 18?!  (Especially after she couldn't remember hiding her brother's DVD the week before!) Or is it that she cares so much about the fluffy leopard?! 

I am not sure which I find most amazing, but what I find worrying is that the very same day we found her sitting at her window watching our neighbours who had a bouncy castle in their garden that day; writing down the phone number of the bouncy castle company!!  I am hiding all the phones on her eighteenth birthday!!

Hide the Hobbit

I am not sure if this incident is to do with ASD and 'mindblindness' or memory loss due to epilepsy, or impulsive behaviour due to ADHD or whether it is just plain sibling rivalry but I thought you might enjoy it!

A few weeks ago we were at a supermarket and Jed had taken his well earned and saved up pocket money with him in order to buy the long awaited (by him, not me!) film, the Hobbit.  He got to the shop and found the film.  As we continued to browse around the shop we became aware that Imogen was becoming irritated and picking up random (and sometimes inappropriate) films and putting them in the basket.  I asked her what she was doing and she replied that Jed was buying and film and so she wanted to as well. Unfortunately there really was nothing she actually wanted at the time (the new Tinkerbell film was not yet out!) and so we convinced her to leave it this time and to save her money.  Or so we thought....

When we got home, Murray and Jed settled themselves in front of the television and watched their epic while Imogen and I played.  Every now and then she would mention how unfair life was in the fact that she hadn't bought a film to watch too, but I was really unsuspecting.

At some point after the film Imogen must have decided that Jed should no longer own aforesaid DVD and decided to hide it.  We didn't realise that it had been hidden until about a week and a half later when Jed came in, upset that his DVD was not in his case.  Now this is not an uncommon occurrence in the Golder household, quite often the previously watched DVD will be left in the machine and then discarded somewhere on the cabinet when the next viewer comes along with another film so I didn't really take much notice - I just told him to go and have a better look.  When 48hours had passed and Jed was getting near distraught stage I started to wonder whether he could be right, had Imogen hidden the film? 'Surely not!' I thought, but by now my doubts were large enough to cause me to ask the question.  So, off I trot to Imogen who is oblivious to Jed's despair and playing happily in her room without a care in the world.  'Imogen' I ask, 'Did you hide Jed's DVD?'  

'Which one?' she asks. 

'The Hobbit, the one he saved up especially for' I reply.

'Oh....hmmmm...I might have done...let me see....yes...I think I might....but I can't remember where I put it......have you tried under the sofa?'

'Yes Imogen, I've looked there.'

'Have you looked on the bookshelf?'

'Yes, Ive looked there too.'

'Hmmm...well....I think I might have hidden it, but I don't know where now!' and she returns to her toys on the floor.

Now you have to understand that ASD causes very black and white thinking without being able to see anyone else's point of view.  So, when Imogen hid the DVD it was the worst thing in the world that could have happened to her.  She could not see, or let go of the fact that she didn't have a DVD too.  And when asked about hiding it she could not lie, there was no attempt to hide the fact that she probably did hide it, but at that moment in time her Aqua beads where far more important.  There have been similar times in the past where I have gotten angry with her, made her leave what she was doing to come and fix whatever it was that she had done, but she doesn't make the connection of what on earth it has to do with her, so she will gladly come and help the family, but cannot grasp that she was the cause of it - no matter how angry I (or Jed in this case) get.  It just confuses her.

Well this day I spend a good 3 hours looking for the DVD, and as a previous post of mine testifies, that doesn't put me in the best of moods.  I didn't find it that day, and so the search continued the next day.  I finally found the DVD (which I still haven't mustered the motivation to watch by the way) slipped between the DVDs in my boxed set of Gilmore Girls.  A sense of relief and 'flippin heck it was her all along' washed over me.

I took the DVD to Imogen.  'I found Jed's DVD Imogen' I said.

'Oh, where was it?' she asked.

'In my box of Gilmore Girls DVDs'

And her response; 'Oh yes, I remember now, I did put it there!.....Sorry Jed!'