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

SEN and Supply teaching

This week has been a busy one (hence no entries - sorry).  It has been made particularly busy by the fact that I was offered a few supply slots in a couple of different schools.

Imogen has also had a supply teacher in her class this week and has found it tough.  So I write this entry from both sides of the teaching/parent line....

 It takes Imogen a lot of time to get used to a routine, especially a challenging one like main stream school.  School is sadly not her favourite place in the world, however, in the main she manages and doesn't moan too much. But then suddenly there is a different teacher for a lesson, a day or maybe a few days and it completely throws her, bringing stress crashing down around her.
Supply teachers nowadays generally follow the plan that has been left by the class teacher (which means far less thinking on your feet - hurray!) But they obviously do not do things in exactly the same way as the class teacher, or have the systems set up for giving out, collecting in, how they do a particular task etc set up the same.  It is these small changes that Imogen really struggles with.  Last week a supply teacher was introduced to Imogen's maths group on Thursday. He will do each Thursday maths lesson for the next few weeks.  His first mistake??  Being male!!!  This integral part of being was a problem for the Autistic part of Imogen!  The second issue - being a stranger!  Now, we have explained to her many times that everyone is a stranger until you meet them, but in Imogen's mind this is definitely a black mark upon his name and unless there have been proper introductions her remains a stranger that should not be talked to!
Apparently, both last week, and this, Imogen didn't last much longer than 15 minutes in the class before her TA needed to take her out as she had got herself so worked up that she couldn't process the maths tasks that she would normally be able to do easily.  I am thankful for a wonderful TA who is able to tell when things are getting too much and take her to a quiet work area before she gets into trouble.  We talked it over on the phone afterwards and The TA, Immi and the supply teacher are going to sit down and have proper introductions before class next time, so hopefully things will improve.  So hard for Imogen - the stress of knowing that she didn't have her normal teacher on Thursday had a huge impact on Wednesday evening, her sleep that night and getting ready for school Thursday morning.  It seems somewhat like the iceberg; we only see about 20% of an iceberg, the rest is lurking unseen, under the water.  I think it is like that with Imogen; school, friends, clubs, church, probably all only really see about 20% of her difficulties.  The stress, the lack of sleep the needing to regress to cope at the end of the day, seizures, nausea, remains unseen by most - she manages amazingly well, I am proud of her.

As for me, I guess the silver lining (if you can call it that, in looking for the positive) for other SEN children, is that when I walk into a class of children that I don't know I am more aware now of the differing needs.  If I am told 'we have a child with Autism' I know straight away that it would be best if I go and introduce myself before the class arrive, and if possible make sure the parents know my name the day before so that they can prepare and keep reminding the child 'Remember, It will be Mrs Golder today, not Mrs X'.  If I am in the school earlier in the week in a different class I make a point of going to meet the child.   I automatically know now to ask if he has a visual timetable, weighted cushion, certain routines.  I know to give him choices rather than force an issue, spot the warning signs of a building meltdown and hopefully intervene rather than demand something is done in a certain way.
Or if there is a child with ADHD - I know I need to break it down into even smaller bite size chunks, be over liberal with the praise and stickers, allow them space to go and walk around if they are looking fidgety, be more aware if the rain is drumming on the roof or hand dryers are blowing.
Knowing the stress that having a supply teacher brings to Imogen, I am thankful that I can be an 'aware' supply teacher to other children who struggle with similar stresses and I urge any supply teachers out there, please don't forget that there are children who don't cope well with change - they are not necessarily 'naughty' children, they just need a bit of understanding - and, if you don't know anything about ASD, ADHD, etc - get in touch!!

Hama bead hell!

I am sure that many parents will identify with me (not just those of special needs kids) when I say Hama beads are a nightmare!  They are a blessing and a curse.  Love 'em and hate 'em!

Imogen, bless her (!) can concentrate for hours on Hama beads.  I learned very early on, that you decant a few into a pot for her to use otherwise the whole 1 litre tub (from IKEA) of beads ends up over the floor as she digs around for the right colour.

 I then soon progressed onto the 'do the whole thing on a tray' idea.  Trying to contain the spread, like a contagious disease, of Hama bead infestation spreading through the house!
Three days ago she started a coaster.  She sat at the kitchen table placing all her beads onto the tiny little spikes, concentrating and working hard to find the right colours to finish off her pattern.  The finished coaster would make a 10x10cm square and she worked diligently to finish her masterpiece,  (even through breakfast when she should have been eating - but that's another story!)  She finished and moved onto a heart with concentric hearts of different (clashing) colours coming from the centre.  
Before she went to bed that night she asked Murray if he would iron them to make the whole pattern into one solid sheet which would hold together.  He said he would.  The following evening she asked me if I would iron the square and the heart to make them into solid sheets which would hold together!  The following evening, she had a jolt and knocked the tray flying.  Hama beads went everywhere, and the two shapes as yet un-ironed flew all over the place.
OH THE GUILT!
How awful did I feel!  Both of us had promised to iron the shapes and both us had failed to do so and now all the time, effort and hard work Immi had put in had been ruined.  Yes, I spent the next hour (yes, a whole hour!) making a square coaster and heart shape!  They are now sat on the tray opposite me (as yet un-ironed) but at least back to the form that they were in when left by Immi.  I wouldn't mind if this was a one off occassion, but no!  This has happened many times!! You would think we would have learned by now - you place the beads, you iron the beads - IMMEDIATELY!
Anyway, I'm off now.....to get the iron out!

Charity choices.

I met some lovely people this evening.  We walked into the room, knowing hardly anyone (actually there was one other couple we knew) and walked out having connected, chatted and made friends easily with a number of people.  What made it so easy?  We all had something in common.  We all had a child with Autism.  

We have not had very much to do with the charities surrounding Imogen's labels.  Not for any prideful, 'we don't need it', issues (its quite clear we do!) But simply because we haven't had the capacity.  If Imogen only had one diagnosis it might have been easier - you would know who to give your allegiance to!  But it is more like playing cards, 'pick one, look at it, put it back in the pack!'  

We have 'dabbled' in charities.  Hemihelp (for children with hemiplegia) gave us some great advice and have a really useful parents forum on their website. So when Imogen was first diagnosed I spent a good six months writing to people on the forum and my Dad also ran a half marathon raising money for them.  

I also spent a bit of time on the Dystonia Society website when she was diagnosed with this strange and unpredictable disease. The actor who played 'Charlie Fairhead' in Casualty was their patron, being a sufferer himself, and we continue to dip into both of these great charity websites. But then the epilepsy rose its head - I knew nothing about epilepsy, but I knew there was an Epilepsy Society as we lived in the village where their headquarters is based. 

So again I read up on their website, but then the wave of the next two diagnoses - ADHD and ASD (don't even start me on dyslexia!) and with them a whole lot more charities.  I found it all, the number of labels, diagnoses, charities and websites, quite overwhelming and backed off from most.  Not because they weren't friendly or helpful, but there was just too much information, I felt like I was constantly playing that game at the fair when you hit the gopher on the head and another pops up.  Just to keep on top of all the medical appointments was a feat, let alone try to make contact with charities, and which would I pick anyway?!

When we moved up to Derby I was put in touch with 'Umbrella' which is a charity in Derby for families with Special Needs children of varying diagnoses. That was helpful and we became members. The group met once a month (and still do on the first Wed morning each month) at our church, but I still kept my distance.  I didn't intend to keep my distance and I wasn't sure why I was.  I only recently realised its because  I just don't have the capacity.  Now that sounds a bit crazy when it is a charity that in its nature is supportive and caring (as most are), but actually to be involved in any charity takes time. Time to fund raise, to listen to other parents, to go to meetings.  And I just didn't have any margins to do that, I guess fear of being sucked into something that I couldn't cope with kept me away.

This evening I think may have been a turning point.  We went to a meal.  It was a meeting of the NAS (National Autistic Society) Derby Branch.  It was great, there was a natural connection.  People who understood.  People who had been through similar experiences and had either walked a similar path or were walking it now.  I met some people who I have a feeling are going to become good friends.  And I realised that for the first time in years, I must have found some capacity!

(I do want to say at the end of this blog that ALL the charities that I have had any dealings with have been supportive, helpful, friendly and ready to help.  It is simply our journey that has stopped us getting more involved in any one charity.   If you or someone you support is struggling and needs support in a certain area - please do contact the relevant charity.)

Those old toys....

Jed went on a school trip today that wasn't getting back until 5.30pm, and so we picked Imogen up and instead of going home we headed to some friends who live nearer the school than us.  We stayed for a while until Jed arrived back.  They had their two year old grand daughter with them for the afternoon and in the living room, as you would expect, there was an array of different toys that she had obviously been flitting between.  By the time I had entered the room Imogen was sat in the midst of the toys and had focussed in on the old Fisher Price garage.  I'm sure some of you remember it; the one with the car lift where you turn the little handle and the lift 'pings' as it goes past the floors.  Then at the top it releases the car and it rolls back down the curved ramp to the bottom.  It's a great toy, one I remember playing with as a child - I think our next door neighbours had it!

The next half hour held a number of realisations for me.  While the two year old busied herself around Imogen, playing with animals and saucepans and cars, Imogen remained solely focussed on the garage, turning the handle, lining up cars.  The nine year old playing alone, the two year old every now and then saying 'Mimi?' and holding out a car to Imogen.  When I spoke to Imogen she emerged for a moment and would interact a little, but in the main the child who should have been interacting was in her own world and the one who in child development terms would have been quite within her rights to play totally alone alongside another was the one reaching out, trying to interact.  I was sad.
Another thing I realised was that I do the whole, coming home from school thing wrong.  Imogen loved sitting on the floor playing with toddler toys.  Normally we come in the door and I give her a drink and ask her to get her reading book out, wanting to get it out of the way.  Watching Immi this evening I think what I need to do is swallow any pride I have and go back to those toddler toys, put something out for her to play with and allow her to regress a little each afternoon without the TV and without normal 9 year old pressure.  She needs time to be.  I need to allow her to be.

The Pink Straw

In our home, or maybe just in Immi's world, straws are sacrosanct!   You may only touch them by permission and use them at your peril!  Actually, there are levels of straw importance; green straws are actually pretty worthless, others are often allowed to use these. Yellow straws definitely have higher status and are less likely to be given away.  But the most precious of all are the pink straws, woe betide you if you take a pink straw without asking!  The other day I put a purple straw in Immi's drink, thinking it was a pink straw (I swear on a Dulux colour chart it would only be one, maybe two shades away!) I heard her muttering to herself, or more correctly, to the straw, "I don't want you, you stinky straw!" and saw her take it out, throw it in the sink and go and find a pink one from the straw dispenser - Yes, I eventually gave in a bought a straw dispenser for the pesky plastic creatures that were taking over my kitchen!

'Why have you allowed her to become obsessed with straws?' I hear you cry (Oh sorry that was me!!) IIt wasn't deliberate, but there are a mix of circumstances that have lead to today.  Firstly, due to the hemiplegia (doctors think she had a stroke when she was younger) the right side of her body is weak, this includes her mouth.  She finds it hard to pronounce words quickly, struggling to keep up with others when singing a song.  But also it seems to have made it harder for her to drink from a cup without a straw.  She is better now than she used to be, but still definitely finds it harder, choosing to have a straw if possible.  If she has a cup it will take much longer to drink, just little sips at a time and will most likely leave most of it.  So we got into a habit of giving her a straw when possible, just to get as much drink into her as we could.  This was especially pertinent when we discovered that one of the side effects of a drug she is taking for epilepsy can be kidney stones!  - Anything to get her to drink more is a plus!
However, little were we prepared for the HF Autism to kick in!  One of the aspects of Autism that can occur in some is obsessive behaviour.  I have to say, as I look at her now, I could imagine her obsession with the straws to be far worse.  She could take the dispenser everywhere, lining them up rain man style all around the house, thankfully she doesn't, she leaves them in the dispenser on the kitchen table.  However, we see it come out in an obsessional determination and mindblindness (another aspect of Autism that means they cannot see from another person's perspective) which tells her that the straws are hers, with a Gollum like possession that only those with powerful persuasive skills can draw from her!  And also that in a strange straw caste system, the pink straws are superior to any others, simply for being pink!  I say hurray for the purple and green straws that I can use as a negotiation device when we have visiting kids!
When we go out to someone's house, or to a cafe a lot of work and preparation has gone in over the years to get her to the point she is at now of being able to accept the answer of the host/waiter that they don't have straws, or (the worst of all worsts) they only have black straws! (What were they thinking?!)
I am proud of how she copes now with 'the straw issue' in public - although I do wish the person who taught her that the best way to get the paper off a McDonald's straw is to tear off one end and then just blow - sending it flying across the room, hadn't done so!!

Is it OK to miss drugs??

Facebook is full today of statuses (is that the plural of status??!)  from Mum's wishing the last few days of school holidays to go past quickly.  I have to say, I do not share this sentiment.  I don't look forward to losing the kids to school again.  I have enjoyed spending time with them, going to the park, snuggling up to DVDs, the odd board game, meals cooked and eaten at a more leisurely pace.  There is however, something I am missing...

Methylphenidate Hydrochloride (otherwise known as ADHD meds).  I mentioned these in a previous post stating that I love the fun Immi who smiles in the holidays while she is off the meds.  Now however I am getting to the end of my patience...to the end of 'please go and get dressed Imogen' for endless hours until I go and dress her.  Her homework over the holiday has simply been to read a little each day and to focus on 6 words to learn.  This small bit of homework we ignored the first week while we were in Scotland, but have attempted this week.  It has been a stark reminder of how things used to be.  An arguement and strong negotiation to actually get an attempt (I should work for the UN - my negotiation skills are well honed!) and then the effort, oh the effort of reading a sentence, just one sentence in one go without getting distracted by everything and nothing.

We also noticed very very quickly her need for proprioceptive stimulation (needing lots and lots and lots of hugs and needing her weighted blanket at night).  I like hugs but not that much and do find it waring having a 9 year old wanting to cling on all the time.  I waiver between wanting to tell her to stop, to feeling really guilt about telling her that I've had enough (a Mum isn't supposed to do that are they??)

It has shown us clearly how much of a difference this medication, that gets a lot of bad press, makes to our daughter.  We deliberated for many months about whether we should try it.  I am glad we did.

21st Century thanks!

We spent a fun, and slightly intimidating half hour in a Victorian classroom yesterday.  We were at the museum of Childhood in Sudbury; a fun place, made slightly scary by the fact that my childhood toys are now in display cases!

We sat there squeezed into old wooden desks and benches with a slate and charcoal while the teacher harangued us for various things.  I got told to get up earlier to plait my hair, one woman got sympathy as she had obviously been made to work until her fingers bled (she had nail varnish on). 'Have you never heard of Carbolic?' she raged at the man with the growing in beard and 'a boy with a ring?!' was thrown at Murray.

When asked to write, we had to hold up our implements and those using their left hand were suitably addressed.  (You were only allowed to write with your right hand in those days).  She decided however that as it was still the holidays she would allow this travesty - 'just this once!'  Now, at this point I began to worry somewhat.  Imogen had chosen to sit apart from us, not far away, within sight and shouting distance, but definitely out of arms length.  She had already managed to climb through the chimney - which I was very proud of her for doing, somehow she even managed to turn herself round inside and comedown the slope at the end feet first!  But I did wonder what she would have said to the teacher if she had tried to make her use her right arm, and also how I would have reacted as her Mum.  Would I have jumped up and protected her?  Would I have observed to see how Immi coped?  I'm very thankful it never got that far as the mix of hemiplegia and ASD probably would not have been helpful!

As the teacher started telling the class how blessed they were to be getting an education and how if they didn't obey immediately they would be in danger down the mines or in the mills when they started work, I drifted off and started to think about how limited Imogen would have been in that era, she would have probably been humiliated at school (if she had even been sent), her labels would have probably been very different ones and definitely more derogatory. Her prospects of work would have been very limited if there had been any at all - not good in a mill as crawling and nimble fingers are not her forte, not a great seamstress or laundress or maid....I guess her only hope would have been the advice given by the teacher, to find a wealthy husband!

The teacher was actually very kind to the kids.  Adults got told off for starting their writing early, but Imogen was overlooked as she, obviously trying to do it well, started before we were told. And as Ma'am went round picking on the adults for their scruffy handwriting my heart was in my throat as she looked at Imogen's slate....what was she going to say? How would she react?  I knew at best there would be some barely legible scratchy scrawl, but I could have kissed that stiff backed National Trust worker when she praised her and told her how beautiful it was!

I was thankful to come out unscathed, and even more thankful that Imogen came out happy.  But most of all I am thankful that she is born in a time when there is understanding, and help for people who have to struggle to achieve what others do easily.  When there is a medical profession that has more understanding of how to help many disabilities and diseases than ever before.  When there is technology that has developed aides to help physically with many tasks and with communication so that people who struggle with writing almost have no need to do so anymore, and people all around the world can share their expertise quickly and easily to develop products faster.  I know there is a lot to be sad about in the world; a lot of injustice, a lot of evil, a lot of unkindness, but there is also a lot to be thankful for  and I for one, choose the path of thankfulness.

Freedom at the park....

The park is a great place for freedom and fun.  The one near us 'The Arboretum' boasts of being the oldest park in England.  It is not for this reason that we go though. The reason we go is the play park.  It is right in the city centre in a very multicultural area and so the council has thrown loads of money at it.  As a result it is the best kids park in Derby!

It has a zip line, a play ship in sand with pulleys and tubs to fill with sand and pull up.  It has a swing with a bucket seat which is great because you can swing high without having to hold with two hands. It has a giant climbing rock in the centre which makes Jed feel like he has conquered the world!  It has the most amazing cafe that does great (and cheap) jacket potatoes and is run by members of the deaf community (there is a large community of deaf people in Derby as we have the Royal School for the Dear here).  It has an art centre that 12 times a year put on free kids activities and it has a water area that in the summer spurts out fountains of water at random moments on a soft surface (I wonder if we will get any weather when the kids can use it this year!)

I feel like we have found a secret little gem, and if you ignore the odd group of street drinkers, I do wonder why it is not more used.  But the reason I mention the park today is not just to rave about the great city centre of Derby, but to tell you about Immi. 

She loves this place and it challenges her, but it is a moment when she is definitely more than her labels!  She gets up on top of the ship in the most unladylike of styles, but she does it.  Plenty of kids would say, 'that's too high, I can't get up' and just not bother, but oh no, not Immi, she wiggles and squirms until there is enough of her body on the platform to turn over and get up.  She sits in the rope cage while Murray pushes it round and around, enjoying the sensation of dizziness and then screaming 'now go the unsick way!' wanting him to push it the other way!  
With this park, as in nearly every park, I go round with my heart in my throat, waiting for her to climb on something that is just a little too much for her and fall, expectant of this I hover with an emergency bag full of plasters and antiseptic wipes and cream!  But something in the mix of equipment in this park  is different, it is just the right stage for her; challenging, but enough stuff that she can access so that she feels like she achieves too.  There are many parks that don't quite do this, they are either too babyish and she gets bored or the equipment is too difficult and she gets frustrated.
So, thank you Derby City Council - you got this one right!

The appointment.

So we made it to the Paedicatrician's appointment (actually 45 minutes early as I had written the time of a cancelled appointment on the calendar instead of the new time - doh!)  When we finally went in they said it was a shame we couldn't have come to last week's appointment as that was the joint clinic with the neurologist!  What????  It is true! I had been sent two appointments, one a week after the other, and so being a dutiful and mindful user of the NHS I called the Paediatrician's Secretary and asked if they really wanted us at both or whether we could cancel one.  She said that we should cancel one, obviously (now) presuming that they were both the same - turns out they weren't and of course the one we chose to cancel was the wrong one!  It is so rare we get to see the Neurological consultant now it was a disappointment, but after getting over this it was a good appointment.

The doctor had thought about some of the things we had asked last time, including a question about Lead poisoning, so that was helpful.  We fed back about the ADHD drugs and about the Botox.  It was interesting/humourous watching a male Middle Eastern Doctor chasing a 9 year old girl around the room because he wanted to see her arm.  If only he had actually asked her before getting out of his chair to chase her then she may have said yes.  But to approach a High Functioning Autistic child without explaining why you want to have a look - just won't cut it!  In the end he decided to just let the physiotherapist do the follow up!!

One of the ongoing decisions we are trying to make is whether to try something called the 'Ketogenic diet'.  It is like a very strict, measured out Atkins diet, high protein and fat and hardly any (measured Carbohydrate).  It is a diet which has been developed to try to treat Epilepsy and is used in some children whose seizures are hard to control.  It works on the premise that if you limit carbohydrate in the body it basically puts the body into starvation mode.  This increases something called 'Ketones' in the blood and it has been discovered that raised ketones can prevent seizures - phew!  That's how I understand it anyway - if any of you have a clearer/better understanding or experience of the Ketogenic diet please do get in touch.  The interesting thing is that this is how Immi would naturally choose to eat - she really doesn't like carbohydrate that much and would eat a whole pack of butter if I let her.  Friday is 'Fried egg day!' and she would rather have a lump of cheese than a packet of sweets, so maybe this would suit her.

Imogen's seizures are still not well controlled despite trying many different types of epilepsy drugs.  The cocktail of 3 that she is on at the moment is making her so tired and we had mentioned in the past that we didn't like her being on 3.  Under the Paediatrician's advice we had tried to drop one called Keppra, but each time we tried to drop it the fitting increased.  So we talked this over with the doctor and epilepsy nurse and decided that we will try to drop out another of the drugs (Epilim Chrono).  We have to drop it one small increment a week at a time so it will take at least 6 weeks.  So that is the journey we are about the embark on over this next term - drop out the Epilim and if we need to increase the Keppra, whilst keeping the Lamotrigine the same - got it?  Clear as mud?  Good!   Now we have to go and chat to the GP as the letter from the Paediatrician never gets to the GP before we need a different set of drugs.  We started to get to know a GP at our new surgery, but didn't realise she was covering a maternity leave, so now we need to decide on a GP within the surgery and try to see that doctor each time - no mean feat in this surgery when you can only call in the morning and not make prior appointments! Hmmm.

In September we will have a joint appointment with the Paediatrician and the Neurologist from Queens Medical, Nottingham.  When we meet she will decide if there has been enough of an improvement or if the meds change fails (again) to control the seizures, we will try the diet. 

So do come on the journey with us - we could do with some good friends on the way!

Paperwork, paperwork, paperwork....

I have just spent well over an hour looking for a piece of paperwork that I was wanting to take to Immi's Paediactrician's appointment tomorrow.  Can I find it? NO!  I don't do well with not finding stuff - I desperately need a bit of empathy from those around, but near me is a dangerous place to be during a search, so Murray and the kids are downstairs keeping their distance! Searching for stuff is like the most unnecessary use of time ever!!!  (So a bit of cathartic typing is probably just what I need!)

Now I know we all have paperwork - it is the bain of many people's lives, but the parent of a child of a special needs child, or I am sure any child that has been through hospital treatment will know the extent.  We have a full size filing cabinet in our study the top drawer holds all the household stuff; bills stuff, bank stuff, insurance, car stuff etc and then, one whole drawer is dedicated soley to Imogen's paperwork! There are folders for the numerous medical departments we have attended over the years ranging from neurology to speech & Language, pyschology, etc etc, there are folders for different aspects to do with her education and the statementing procedure and reviews, there are folders for different charities that we have been in touch with over the years.  Overall in this drawer there is a grand total of 24 files of varying thicknesses, and yes, I did just go and count them!!  At some point in the near future I am going to have to 'face the drawer' (spoken in a X-Factor voice over kind of voice!) and archive some of the paper work from a couple of years ago.  (I think for now I will avoid that thought though!)
 Now generally I am very organised with her paper work, I have had to be or I would just die under the pile of paper!  But this time apparently I wasn't!  The report I was after is missing - well and truly.  I have been through every file; the ones marked school I have been through 3 times as that is where I thought it was! (No, I don't think I have OCD!)   My heart goes out and I find myself wondering how parents who maybe also have special needs, or struggle to manage themselves cope.  Do they get to appointments?  Do they manage to order the right meds from the GP at the right time?  Can they give feedback to the doctors when they ask?  I guess they just do the best they can. 

So that is where I am too - just doing the best I can.  This time I can either truly go insane or admit defeat and go back when school starts again to ask for another copy of the report.  Either way I won't have it for the 6 monthly appointment tomorrow which is very frustrating. Anyway, I am off now to make a list of the things I want to cover with the doctor tomorrow and file the growing pile of paperwork that is on my desk from the last few weeks!

It's me!

In honour of getting past the 1000 views post I thought I would add my photo to my profile! What a treat - I know!!! ;-)  So thanks everyone for reading, I'm quite overwhelmed with how many people are reading,  where you are all from and the encouraging comments through the blog, FB and Twitter (have to admit to not really getting the hang of twitter yet though!)  I hope it helps you in all your social circles, many of which I'm sure many are touched by varying special needs too.  K x 

My bro - My hero! (The Sibling)

I can't go any further without passing comment on 'the Sibling'.

The sibling is the one that puts up, in love, with so much rubbish dealt out by the brother or sister with special needs.  The sibling is the one that watches on while their brother or sister goes through whatever pain they are in.  The sibling is the one that ends up often sitting in hospital waiting rooms or filling their own time because their parents' attention is demanded by the other.  The sibling is the one that despite probably not wanting to, innately carries a feeling of responsibility for his sister which he just can't put down - Jed - is no exception.

Jed is 14 months older than Imogen and in the main is great with her.  He is a 10 year old boy, so he has his moments, but mainly he is very patient with her.  We try hard to get him out to do the things that he should be doing as a 10 year old boy - climbing mountains, sledging, biking, swimming etc, but I have to say these things are not as often as we (or he) would like and never as a whole family.  But I don't think I have ever once heard him complain about missing out because of his sister.  

The other day, I walked into the living room to find them playing a 2 player Wii game.  Immi as usual had her character running around aimlessly falling into the river and I heard him say 'Don't worry Immi, I'll help.'  He directed his character over to hers, picked 'her' up and carried her to where they needed to be!  So often this is how he is with her in life too.

I have lost count of the times I have said to him 'Don't worry Jed, you are not her parent.  I will find her/do it/help her (delete as appropriate!)'  His sense of responsibility has risen over time, but I guess there are a few moments I can put my finger on that probably played a part in defining this. 
As I mentioned in a previous post, probably the first of these things was seeing for himself her first seizure in school.  A couple of years later at Christmas time we lost her for a few minutes in the local shopping centre.  I had taken them to see Santa and afterwards we were headed to a shop to choose a drink.  I was holding her (good) hand on one side and Jed's at the other (he was probably 6), she let go of my hand for a second to move a hair or something and at the same time I said to them both 'Let's go over here and get a drink'. I started to move over, through the crowds, the few feet to the shop.  We got to the shop and I turned to Jed, 'what drink would you like?' I asked, then turned to Immi.  No Immi. NO IMMI!  I have never felt such horror before.  I didn't know whether she had come into the shop with us and was wandering - as is her norm or whether she had continued with the crowds in the mall.  
I ran round the shop and couldn't see her, shouted at a shop assistant to watch Jed and ran out into the corridor yelling for Imogen , looking like a deranged woman, asking everyone if they had seen a little girl.  After what seemed like ages (but was probably actually only a few minutes) a little old lady said to me that she had seen a little girl further down the corridor.  I ran down the slope and out of the doors to the street at the end to find Imogen talking to a group of teenagers.  I was glad to see that they looked concerned rather than amused but Imogen looked as happy as Larry, not concerned at all that she was talking to complete strangers and had no idea where her Mum was.  I think she would have probably continued her adventure given half the chance!
We walked back to Jed, who was beside himself, absolutely bawling his eyes out in the shop.  The assistant had given him a drink and some chocolate, but he wasn't interested, he was so worried. The following year I got the 'Santa photo' out from that day and his response was 'I hate that photo!' I hadn't made the connection, but for him, that was the day we nearly lost Immi.
Then there have been swimming pool moments.  Immi loves the pool (in the summer), but we watch her like a hawk as she has no sense of danger and also could have a seizure and slip under.  Most of the time I or my husband stay in the pool right beside her, but on holiday there is the odd time where we have sat on the side and watched, able to get to her quickly if needed.  We realised though, that Jed gets there quicker.  Last summer, they were in the pool where we were staying and she went into a seizure.  I have never seen anyone react so quick.  He was there in a flash, and carried her out of the water.  He chose this year after finishing his swimming levels to join the Rookie Lifeguard class.
Even yesterday, we went out with some friends with 3 children.  All the kids went into the pine forest next to the path to play, but after a minute or two when we called the boys appeared but the  girls didn't come.  We had a few minutes of searching and yelling for them before they finally emerged - totally unaffected!  But after that moment I noticed that as we walked along and the children ran in and out of the trees, Jed didn't go in, but instead always had his eye on his sister, watching, making sure she didn't go too deep and yelling at her to come back if he thought she had gone too far. There is a strange mix of emotion in me, immense pride at his love and compassion, guilt for not being good enough to assuage his fears and not have to carry a sense of responsibility and sadness for him not being able to be totally free.

I know up to now, I have made him sound like an angel.  He's not!  There is an area in which he struggles and that is in her over affection at school.  He has reached that age now where hanging out with his mates means things have to be 'cool'.  Imogen is anything but cool.  She is bouncy, fun, vibrant, definitely not cool!  And I have had to tell her on a number of occasions that she can hug Jed at the start of school and then end but leave him alone at lunch and break time (which in her head means that he is the meanest brother ever and he 'NEVER' plays with her, which I know is untrue as all through the snowy days I know it was Jed that played with her and watched out for her on the playground!)

I think I would have probably snapped by now, and I know very well that Jed has learned how he can easily press her buttons to get a reaction, but in the main he is great with her, giving her time to process when she needs it, watching over her and encouraging her when she so often deals out rubbish upon him, claiming she never wins, when she has won the last 3 times but just not this time, or that he 'never' plays with her!

But today, as I ask Immi what she would like to say about Jed she says 'Jed, my bro, he's my hero!' Couldn't sum it up better myself!

What will I be?

As a parent I know that part of my role is to help my children find what they are good at, what they enjoy, what they are gifted in, with the hope that they will find what they would like to do with their lives that will bring them purpose, satisfaction and fulfillment.

Any teacher will tell you that those who are short on attention, often excel in sport or the arts.  We search.  We search for ‘the thing’ that will be the key to unlocking our future profession.  And Immi is no exception – I search....

She is dramatic – but can’t cope in a role that needs set lines or for you to follow certain rules about when you are on stage and when you are off!

 She is crafty, but a lot of crafts need two hands and become incredibly frustrating after a while.

 She is sporty, she loves to run, but she is terribly unbalanced and terribly tired.  After our trip to the Paralympics last summer we did go to Athletics as she wanted to try long jump, but it was a Thursday evening and she simply couldn’t manage it. 

She loves animals, but most work with animals involves outdoor work. She loves being outdoors but hates being cold – a problem in the UK!

However, Immi is quirky, and caring and arty.

Immi loves art and personally I think (although probably I am biased) that her art is quite commercial.  When she is in a bad mood she has recently taken herself off to draw a picture.  She has drawn lovely birthday cakes for cards which are quirky and cute. 

She also loves hospitality – she will spend hours laying a table for guests and try her hardest to make beds and prepare for people.  As I write she has been half an hour in the bathroom – cleaning.  I have yet to see if it is any cleaner or whether I will have to go in and do another clean, but for now she is finding fulfillment in helping. 

I know there will be a niche for her somewhere.  I know her choices are more limited, but there will be the perfect fit somewhere.  My two children have such very different searches on their hands – Jed can try his hand at many things and find what he enjoys.  Immi has to wait, bide her time and then the right thing will be perfectly clear.  In some ways I wonder if her path will be easier to find, like how sometimes standing in a huge Tescos with a billion choices of Orange Juice is overwhelming, but go to Aldi and you get the choice of one – and it is perfectly good!

A friend about 5 years ago had a picture (like a daydream she believes to be from God) of Imogen being like a golden jigsaw puzzle piece and that she has a very specific role to fulfill in her life that is a perfect fit for her, that no one else could fulfill in the same way.  I am holding out for this – she is amazing, just waiting for the right fit.  We are told in the Bible that God plans to prosper us and not harm us, to give us hope and a future.  I am holding to this promise.

If I could pick one thing to fix - this would be it.

There is nothing quite so paralysing as watching your daughter have a seizure.

Immi's epilepsy started about 4 years ago now.  She was in Reception with an awesome teacher, who became a great friend. There were no signs, no headaches, no aura.  One day she was walking into assembly at school and when the class stopped ready to sit down, she just kept walking into the child in front of her and then went into a seizure.  Her brother who was in year one at the time watched the whole thing; her uncontrollable shaking, the teachers' panic, wide eyed friends around.  The ambulance came and took her to the hospital, we met them there.  She was already undergoing tests for her Dystonia, so this just started another round of testing and the start of what was to be a long journey of trialling different drug combinations to try to control the seizures.

After that day she continued having seizures which lasted at that point up to about 2 or 3 minutes.  I cannot explain to you the feeling of helplessness that comes over you as a parent watching that.  I am so thankful for prayer, that I can lay my hands on her and pray for the Holy Spirit's control.  We definitely started seeing a shortening of duration when we started praying like this.  
Our son in the early days would wander off during a seizure, he just couldn't cope with watching Immi go through something that he couldn't do anything about, so he would run off to his bedroom, and come back when it was over.

At the beginning all the medical staff refer to her seizures as seizures, but suddenly somewhere down the line someone started to refer to them as Epilepsy.  We don't know who or when, but suddenly she had epilepsy.  No one sat us down and explained the difference, no one sat us down and told us what to do.  We didn't want the diagnosis and so we didn't ask.  It was actually months later when I finally asked how long a seizure should go on for before you call an ambulance, and 'can the short 1 minute (seem like eternity) seizures cause damage in her brain?'  Apparently if a seizure goes on for 4 minutes that is when you call an ambulance.
Every time we return to the hospital they ask detailed questions about the time and nature of the seizures.  We keep a diary now of when and how long they last; whether it was a seizure or a jolt (not the proper name, but it is like an electric shock goes through her just once), or just being sick - also linked we think.  But they also ask us, was it one side? Was it her whole body?  which way does she look? etc etc.  What I really want to do I yell at them, 'I'm her mother, I don't stand back an observe her at these moments!  I am willing her to get out of it.  Everything inside me is screaming at it to stop! I don't notice which arm is twitching, or whether it is both, all I am aware of is that she is uncontrollably shaking, stiff as a board and I want her well.'  
But I don't.  Instead I cast my mind back to the last few seizures, all indelibly etched in my mind, and try to become an observer and tell them what they need to know.

There was one seizure where I realise I did become an observer.  It was our son's swimming lesson in the local pool.  He was getting changed and Immi and I had gone to reception to sort out the next term of swimming.  She cannot stand still, so I told her she needed to stay at least where I could see her, there were about 3 others in front of me.  To the left of the reception was an area set back with tables and vending machines, she wandered in there looking at the crisps in the machines.  While she stayed at the left I could still see her.  Suddenly I was at the front talking to receptionist, arranging the lessons.  Imogen had moved to the right, I could no longer see her, but I was in full flow and would only be a minute, my mind was in the lesson arranging.

Suddenly, there were sirens going off and staff running everywhere, it took a second and then I realised. It was Imogen.  I ran round the corner and saw 2 mothers of other children and  2 staff workers all knelt on the floor around a person shaking, jerking, moving uncontrollably.  It must have only been a few seconds, but in that time I was suddenly an observer, suddenly I was watching an epileptic person having a seizure, like watching a programme on TV.  I saw for that second, what other people see when she is having a seizure.  Horrid in its nature, but separated, for a split second there was distance, and then it kicked in, I rushed over; embarrassed that I had left her for a second, angry (I don't know who with, myself? God? the Mum's who were helping?  The receptionist for taking so long to get to me? I don't know, but I was!) I politely explained that this was part of life for us and that she would be fine in a few minutes; waited for her to come round, waited for her speech to return, waited to see if I needed to change her clothes for her, waited to escape the concerned looks and curious stares.

I hate epilepsy, I hate the unknown nature of it.  I hate what it does to my daughter. I hate that she can't have a bath or go swimming without me watching her like a hawk, never leaving her side.  I hate the fact that at present she is taking a cocktail of 3 drugs which don't quite control the seizures, but do make her incredibly tired; so tired that if she slept every hour there is she would still be tired.  I am amazed at how she never complains, never asks me 'why?', she just looks up at me after a seizure with a big smile, searching her brain for my name, searching her brain for any words.  Rebooting, ready to get going again - she is amazing.

As for me - If I could pick one thing to fix - this would be it.