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!'

Picture of contentment

So often I find myself struggling, cajoling Imogen along, hurrying her through life.  It was a joy to see a picture of contentment as I looked out of the window the other day.

I am not a keen gardener.  I really feel at a loss in the garden (unless I am sat in the sun with a book and a glass of wine!) to know where to start.  Thankfully we moved to a home last year with a smaller garden that I feel I can tackle, so last weekend we got out in the sun as a whole family and worked in the garden.  We painted the garden furniture, cleaned the flagstone patio, repotted plants, put up shelves.  There was a moment when Murray and I looked at each other and said 'this is good' we were all involved with something together working for an end goal.  Yes, it was fleeting, but it was there!

A couple of days later I looked out of the window to check on Immi.  She had come home from school and had gone straight outside and had been there a while - the silence was worrying!  I don't know if in your house your have seen any of the Tinkerbell series of Disney films - we have!  (many times!) And it is very apparent to us that if Imogen had been a fairy she too would have been a 'tinker' fairy!  This day paid homage to that - Immi was tinkering with pots, planting seeds, making creations and was beautifully content.  She flitted from project to project, watering one minute, filling a pot the next, deadheading a few flowers, sweeping the patio.  She was enjoying work and once again it taught me.

We were created to find joy in work.  God gave the first humans the job of naming the creatures and looking after the earth, but then it all went horribly wrong and most of us (me included) find work a chore.  I am a 'get the work done and then relax' kind of gal, but sadly the work seems never ending! Imogen however, has a gift of enjoying tinkering, pottering, enjoying her work (apart from reading which is a struggle)  She didn't even notice that she was working - oh to have that gift!

PS If you haven't seen the first Tinkerbell movie, watch it - it has a great message of accepting yourself and working to your gifting, being content with yourself.  Something we all need reminding!

When ADHD helps!

One of the symptoms of ADHD is impulsiveness, acting without thinking at all.  Well, yesterday it paid off!

We had gone to York to look at disability bikes for Imogen (see yesterday's blog!) and after trying out a few we drove into York.  It was a busy Saturday in the city centre and Imogen had not had her meds as we don't give them at the weekend.  Ironically, she had actually asked us if she could take them that morning and we had put her off.  As we walked through the crowded streets and down the Shambles we were constantly running after and then waiting for Imogen.  She was definitely on sensory overload and was not doing well; going from running out into the crowds to a moany 'I don't want to do this.....' said with very long vowels and leaning on Murray causing him to effectively drag her along.

We did get a bit of respite when we stumbled upon the York Festival of Faith - an African drumming troop had just started on the stage and Imogen managed to clear herself a little area as she stomped and jumped in her African dance for a few minutes.  It was interesting to observe that people all walked normally until they got into within a 2 metre radius of Imogen, where they suddenly fell into a strange African dance until they were through the area!  After dragging her away from the drums and then from the American mormon giving out sweets (I think she would have cleared him out of anything and everything he was giving away!) we ambled along to the Fudge Kitchen.  Now I remember many happy summers visiting York with my family and watching them make fudge in the Fudge Kitchen.  Never once did I think to ask if I could help. Never once did I cross the fence, don the apron and join the fudge makers.  Now I realise what my problem was....I thought!

As we stood watching the fudge maker at work, suddenly Imogen (without asking one of us first) yelled out 'Can I help?' -Who wouldn't want to help?!   And to my shock, then delight, then horror as I thought about the potential for problem, they said 'yes!' 

Twenty minutes later Imogen, and Jed (by then Imogen had also asked if he could help!) were clad in green aprons and straw boaters and turned into 'Chief Loafer' and 'Chief Creamer' respectively.  They had a great time, moving the fudge around to break up the sugar crystals (I know all the terminology now!) and gathering it all up.  The staff were all lovely and Tia in particular was so patient with Imogen claiming that the line of fudge they had created was one of the best she had seen!   After they had finished we all went outside to celebrate the 30th birthday of the Fudge Kitchen by singing and giving out balloons with vouchers inside.

Had Imogen asked me if she could help, I would have said 'no!' Had she thought about her arm and the fact that the creamer was a two handed job, she wouldn't have asked.  So I guess the moral of this story is that sometimes having ADHD pays off!

On yer bike!

By now, with children of 10 and 9 years old, I imagined we would be packing up our picnics famous five style and walking through the Peak District; stopping by a brook to sit in the warm sun for a while and then continue on our way over hill and dale, watching lambs gambol as we pass.... (This is the point where the sentence ends abruptly and you hear a needle scratch over a record!....)

The reality is that we have really struggled as the kids have grown older to do active things together.  When we have gone walking, Jed is miles in front, Imogen miles behind (generally with two grazed knees!)  Ball sports are a no no.  Going to the park we can manage, but we end up separated. Ditto with swimming - which is also a place that stress levels are heightened in her because it is loud and in us as she has had a number of seizures in the pool.  Soft play is also very loud, expensive and Jed is getting a bit old for.   I have to admit that even sledging we left her at home as we knew that she wouldn't manage more than once up the hill (she did have fun building a snowman though!) The one sport we did discover a couple of years ago a sport that we could do as a family and it levelled the playing field pretty well.  That sport was cycling.  

We had a Gator bar for Murray's bike and Jed and I had our own bikes cycling behind keeping an eye on Imogen.  There were a number of hairy balancing moments and a couple of falls, but in the main we enjoyed it.  For a few months we even cycled to school!  We got quite blase about biking as a family. Until one day when things changed.  We had been out for a ride along the cycle path near our house and we were almost home when Imogen went into a seizure and fell off the bike.  There were bikes, bags and people strewn all along the pavement!  I don't know what it must have looked like to passers by in their cars but it can't have looked good.  I have to say I was saddened that no one stopped to ask if we needed help.  Not because I wanted the attention or even needed the help as we were so close to home, but sad that it seemed that no one cared.  Many many cars went past, not one driver cared enough to stop.  I hope I have never been so wrapped up in myself that I haven't stopped - all too easy though isn't it?  I probably have. Anyway, before I divert myself completely...it wasn't a good experience!  Murray picked Immi up and walked to the house where she came back to herself while Jed and I walked the bikes over.  That was well over a year ago and it shook us all up a bit I think.  We hadn't felt safe cycling in the same way since then, none of us even suggested it.
Until today!!
Today we went to York.  There is a wonderful bike shop in York called 'Get cycling' and they also do bikes for people with special needs.  I had called them a few weeks ago and arranged to go and try out a few bikes just to see what might be a good option for us.  As we arrived in the car park the heavens opened with an almighty hail shower which thankfully didn't last too long.  We then went into the shop and were shown an amazing array of bikes, some with side by side seating, some with seats on the front, some low down with hand pedals, some tandems, some singles, there was even a round bike that could be pedalled by eight people and steered by one!
Jed had a go on a low recumbent bike and was quite put out when he had to get off!  We took the opportunity to go for a ride with 2 different bikes, one a tandem with rear steering.  This meant that Imogen was sat in front and we could see her.  The other was a normal bike with a piggyback trike on the back, a bit like the Gator bar idea, but just the rear wheels and slightly more stable with two wheels at the back.

It became clear almost immediately that the piggyback bike was good.  It was far easier to ride than when we had the gator bar as it was more stable and the tyres must have been better as it was far easier weight wise.  Just as clear was that we didn't like the tandem; Murray, who loves biking, didn't like the steering from the back and it was very cumbersome and not very practical for going places to ride as a family.  The only disadvantage that remained with the Piggyback bike was that we still couldn't see her and if she had a seizure without the other parent riding behind she would fall.  However, they had a solution to that too, there is a seat with a back rest and straps that can be fitted easily, and just to complete the package, pedals that are weighted so she doesn't spend ages trying to get them to the right place and they could make a glove with velcro so that her right arm doesn't go flayling out to the side as soon as she starts to pedal (as it was today!)

It is so good to know that there is a bit of family fun freedom on the horizon - no more endless 'How to train a dragon' DVDs for us!  Oh, and I almost forgot to say that at the moment that we passed three families of feisty geese with young goslings, Jed was very glad he was not on the recumbent bike!

http://www.getcycling.org.uk