A Good Day? - Pyjama Day!

So that was Good Friday.  Was it good?  It was for Imogen!
So what constitutes a good day for her?  Well, it is very simple - it's a pyjama day!

'That's it?' I hear you cry!  'That's all she wants to ensure it is a good day?'
'Yep!'
Now this is where I get to gloat a little!  While other parents of nine year old children can never do enough, can never take them anywhere exciting enough, can never buy them the next 'in' toy or gadget quick enough to please them, we never have that problem. Imogen is content.
When we go somewhere, ie the zoo, and we offer both kids a couple of pounds in the shop to buy a souvenir, she never spends hers. When we do venture into the shopping centre (which I must admit is a rare occasion) she never wants anything.  She is easy to please.  Christmas is tricky, last year I asked her what she would like, she said 'some paper to draw!' Is that it I asked, 'yes.....oh maybe some pens!' It makes it hard to advise extended family who want to buy a gift.   And when she does receive an unexpected gift she is so grateful, she will keep thanking people years after for something they gave her (even stuff they were getting rid of!)  She struggles to retain names, so I think it may have something to do with her linking the gift to the person in her brain to help remember the name. Anyway....

She came into my bedroom yesterday morning in her bunny onesie, declaring 'I'm the Easter bunny!', asked if she could snuggle and watch a DVD with me and settled down.  Normally we do church on Good Friday but due to her brother having a stomach bug  only my husband went. He has to, he's the Pastor!!
So we spent the day ensconced, moving from one sofa to another, watching DVDs, (the kids chose 'The Lion, the Witch and the Wardrobe - a good choice for Easter I thought!)  Me?  I, as most Mums I image, struggled to do the same, I watched half a film, messaged with a friend, had a shower, got the kids food and drink, prepared for Sunday (I am running the service), made a cake, tidied up my bedroom (which was nearly equaling Imogen's for tidyness!) and caught the tail end of a different film - and that was a relaxed day!  But Immi?

My Easter Bunny!

She was content, 

she was relaxed, 

she knew she was loved, 

she wasn't being bombarded with people, 

overwhelmed with heightened senses and 

pressed to challenge herself academically. 

She was happy....
and once again, I learn.

What is your value?

Ok, it is Good Friday, so I'm going to get deep for a few moments, but stay with me, it has to do with Immi, it has to do with me, with all of us.

We are more than our labels right?  Somewhere deep down we all know that, but how?  The media and our culture certainly don't tell us that.  We are born and start being taught how to walk, talk, read, write.  We go to school to learn, to get grades, to get a job, to earn money, to eat and live and do the things we want.  Of course there is nothing wrong with this, but have you ever thought of the underlying messages?  I hadn't.  I hadn't ever thought about how much emphasis there is on our education.  I took for granted my GCSEs, A levels, degree, didn't really think much of it, until I was faced with a daughter who struggles academically, who struggles physically and who struggles socially and saw her often on the margins.

What is our value?  Where does our worth come from?  Subtly our society tells us that our worth is from what we do.  If we are at a party and say 'I'm a doctor.' (I'm not by the way!) Ears prick up, if you reply 'I'm a house wife' or even worse 'I don't go out to paid work' the conversation moves on.  But our intrinsic worth is not in what we do, it is in who we are.  I want Imogen to know that she is valuable and loved whether she never reads a book in her life or whether she becomes a professor of neurobiology.  Whether her body is whole or broken, whether she can relate to others around her or not.

Sadly, those who often bring the most brightness to our day - I think of the many people I have known with disabilities of varying levels - are pushed to the side because what they add to society isn't seen as valuable enough.  I am thankful that I am loved by a God who loves me for who I am, not what I do.  Who sees value in every life, who takes joy in each of his creations.  I want Immi to know this kind of unconditional love, not dependent on what she can give back.  Yes, those who have no faith may say, I know that all life has value and worth, but I would ask 'How, how do you know that?' Our society certainly doesn't portray

that value.  
How do I know? Because 2000 years ago God showed me. I want Immi to know that kind of love.  I am thankful that I can keep coming back to that kind of love.

What about you?  You are loved too, just for being you.

Will the real Imogen please stand up!

There are two different types of Imogen - and they are like chalk and cheese!

I found myself a few minutes ago chatting to a Mum online who was considering using drugs for her son's ADHD.  We have been through this dilemma, a journey that lasted over a year.  The medics were all 'strongly suggesting' that we try her on a drug.  The school were keen for her to manage without, and after doing some research, I was keen to avoid it too.  However after a year and a half of no academic movement, total refusal to try to read, virtually no concentration, no ability to act with any kind of thought to consequence and CONSTANT requests for hugs (no joke, she just couldn't get enough).  We finally came to the conclusion that maybe we should give it a try - just a try mind!

I took home the prescription, and we ummed and ahhed again for so long that I had to go and get another!  
Finally we decided to go for it and what occurred I can only describe as little short of a miracle.  The change was astounding. Over night she no longer needed the weighted blanket, no longer asked for hugs all the time, almost overnight her reading age shot up, due to actually being able to look at a page without the picture, colours, words, noise, traffic outside, hum of a light switch, wind, rain, sun - everything and anything, being a distraction.(Yes she still struggles to read now, but at least is trying and every now and then I catch her trying to read a book or a sign alone - yaaay!) She could finally sit in a group and answer questions without constant movement and shouting out.  I cannot explain the change fully enough.  And these have continued...
However, there have also been downsides - Immi is still Immi while on the drugs, but she is sensible Immi  - for those of you as old as me, it is almost Worzel Gummage like; she has changed her head over.  Sensible Immi is good, but not as fun and not as happy.  Sensible Immi doesn't like eating and sensible Immi has a bit of a grump on after school (as the drugs wear off I guess). And sensible Immi still has Autism and so doesn't really relate to others on the playground well.  Sensible Immi seems to be getting more tired too - is that the drugs or just that we are at the end of term?

Either way, I am looking forward to having fun loving Immi back for a while (during the holidays). Yes, the house will likely be a mess, yes she will break things, she will drive us all mad (especially her brother!)  She will want the same Paolo Nutini song on over and over and over again - (the Quacky song - sorry Paolo, I don't know its real name!) But she will make us laugh, she will live up to her middle name of Joy.  
I asked Immi a few weeks ago whether she liked taking her 'sensible tablet' as we call it, I don't want her to take it if it is making her unhappy and we constantly monitor whether it is still right for her, trialling a few days without it at school every now and then.  Her answer surprised me; she said it was like someone pulled a curtain back so she could see, and she also said that she thought that she was more the real Immi with the tablet.   Which one is the real Immi?  They are both her. Does she prefer sensible Immi just because she fits in the system better and so gets better feedback from others around her - I don't know.  She appears calmer, more in control on the days with the drug, but she certainly seems more joyful (yes, verging on out of control sometimes) on the drug free days.  I do know that although I love her coping better at school and actually making some progress, I miss her smile on the 'sensible' days, and I love the joy, the freedom, the giggles, the carefreeness of the drug-less days.

 

Frustrating, amazing independence.

I know that one of my biggest jobs as a Mum is to help Imogen become more independent.  I also know that watching her get dressed is one of the hardest things to do.

Immi is fiercely independent and determined already (one of the traits that I admire in her and has brought her through a lot already).  And so every school morning I play a balancing act.  I sit in her room with her and coax her out of bed (I have tried chivving her along, dragging the covers off, yelling, threatening - all of these seem to end up taking longer with both of us stressed out, so coaxing it is.)  I put on 'Tiny little me' from the album 'Great Big God' her present favourite, pull up the blind and tell her about the day, throwing in every second sentence 'Ok lets get your pants on now!'

By nine most Mums should be able to just shout up the stairs - 'come on get dressed!'.  We do this at the week ends.  It usually takes well over an hour of many visits to the room, normally finding her in some state of undress sitting at her desk drawing! So on school days, when time is limited, I must take a different tack. I must stay present.

Generally I have to get her started, pull of the pjs and hold the pants out for her to step into, then she takes over.  Trousers aren't too much of a problem - we only have ones with elasticated waist bands - one handed buttoning, especially on trousers, is tricky.

Then comes the top half.  She will not let me help and so I watch, helpless, everything within me wanting to jump up and aide as she wiggles this way and that to get her right arm which she has no control of into the right position to pull her Pj top off.  Finally free, she shakes her vest (she must wear a vest - even in the height of summer, according to her - not me!) and tosses it around in her left hand to get it into the position to put her head through, then, a few more wiggles and she has her vest on.  

Her shirt, on a number of occassions I do not manage to surpress a 'Can I help you?' is an awkward object.  She manouevers it into a position to get her right arm through the sleeve and leans back, managing, with all her might to lift her arm and aim it into the sleeve, rather like watching  someone try to thread a massive thread through a needle, but holding it about 5 cm away from the end so that they have no control over the tip of the thread.  Eventually she manages this and I am allowed to button up her top button - she has not managed to master this one yet.  Then she painstakingly manages the buttons.  It is painful and heartening to watch - she does it better than I could one handed and never gets angry.  Sometimes she gets a head start and then we have a button race, she starts from the second to top button and I start at the bottom.  As long as it is a draw things stay stable! 
By now she is pretty tired and there have been a number of distractions between (she has not taken her ADHD meds at this point, hence I have to stay present to keep her on task.)  This process has normally taken,  about half an hour to 40 mins, and we still have socks, tie, and splints to go!
The tie - if it wasn't so heart wrenching it would be funny.  She can do this alone and so insists on doing it alone.  Her tie is on elastic (Hallelujah!) and so she places it under her chin and then stretches the elastic behind her head and pulls it down round her neck.  Somedays she manages this fine, other days it keeps bouncing back up and hitting her on the nose or forehead.  Comical but frustrating for her.  Eventually the tie is mastered and she lowers her collar.  I have tried to persuade her that she doesn't need her collar lifted in the first place, but no!  That is how it is supposed to be done.  So she lowers it and then I adjust it as she has always lowered it too far, so the seam is showing and about a centimetre of the inside of her shirt.  
She has never managed to master socks, despite buying them many sizes too big, so I get to put them on and help her with her splint.  We are finished!  Phew!

First and Second baby tucked up in bed.

Oh no, wait!  We must make the bed!  never mind that the rest of her room looks like a bomb has gone off! - we must make the bed and put first and second baby in for the day time sleep.  Now, I have tried bypassing this section - oh no!  Woe betide me!  It just comes round and bites me on the bum as she disappears when she should be cleaning her teeth or getting her coat on, or we have a melt down as we are walking out of the door because it isn't done.  Recently, my husband and I have come upstairs at night to find our bed also neatly made with our night clothes under our pillows - fairies?  No an Immi!

Neatly folded pjs!

We allow 1.5 hours before school in the morning and it is always a rush at the end.  As a person who likes to be on time, and with a responsibility to get my son to school on time too, I get extremely frustrated at the amount of times I am shouting at them to grab their things as we walk (no, run) out of the door.  But Immi will not be hurried, she doesn't work to the time schedule of the world.  And actually, if she did I am sure she would spend her life totally overwhelmed and frustrated.  She has learned (or maybe it is innate) to go at her own pace, to be happy with her achievements, to be determined when she needs to be and find joy in the little things like a neatly made bed.  Instead of rushing her, I should be applauding her, she shows more courage and determination every morning that I often show in a year.

Well done Immi girl!

Pink like Strawberry Ice cream

I have changed the colours on the blog. (Not sure anyone noticed, but I did!)  It is now  - as you can see a wonderful sparkly array with pink and yellow areas of writing.  Why such a, some would say, gaudy mix?  Well, I would reply (after pointing out the vibrancy and brightness in the colours). It reminds me of Immi.  Pink and yellow are her favourite colours - together whenever possible! Yes they clash, but they are also beautiful together in a strange kind of way - like a strawberry icecream in a waffle cone!  And this is what Immi is, beautiful, quirky, amazing, fun and sweet - like a day on the beach eating strawberry ice cream in a waffle cone!

Don't squash the passion...

So I have just returned form Imogen's class assembly. 

Meet RO the robot and BOT the dog...

It was pretty run of the mill.  Kids standing up and speaking, a few musical interludes, photos on the screen of the residential trip, that kind of thing.  Imogen did well.  She had a couple of sentences to read about her robot and robot dog that were made from cereal packets and ice cream tubs (amongst an assortment of other recycled rubbish!)  I was proud of her, she stood up and said her words clearly, albeit much much slower than her counterparts, concentrating on the words that she had to get out, right arm jerking and flailing uncontrollably.  Everyone clapped her at the end, but I came away sad.

Why was I sad? I was sad because they had finally done it;  they had achieved her doing it all in their way.  She had been squashed, a square peg forcibly shoved into a round hole.
 Had they told her she was going to talk about her robot, and then stood her up, given her her robot (and robot dog!) and asked her to tell everyone about it, she would have stood there with pride, face beaming, completely unaware of all the parents and that she 'should' be embarrassed.  Her chin would have been lifted and she would have spoken (probably at length) about the virtues of her wonderful creations! I know she would have done this because she does it all the time, in many situations, anywhere, anytime.  Like the complete rendition of 'I wanna be like you' to King Louis at Disney World and the conversations with the Zoo Keepers at the local Zoo. At church she is all too willing to go out the front to answer questions or join in a song or dance! 
But they didn't want this.  Instead she had to read - that most hated of all activities, the thing she puts off daily, the thing she struggles with.  Her creativity, her joy, her passion and zest for the activity (which she definitely had; she told us many times of the activity and actually made the dog almost single handedly -literally!- at home) were all lost to a monotonous wall of words, not even a straight clean wall, but a crumbling wall, struggling to hold together.
I ask myself, who has the problem here? Is it Immi who actually has the passion about the activity, but it was lost in what she was asked to do?  Or is it the school who can't cope with the uncertainty of what she might come out with, who can't deal with a bit of spontaneity?  
I taught in this very school last year, so I know where the fear comes from; what if she says the wrong thing, what if she has a melt down, we don't want her to make a scene, we don't want her to be different.  BUT SHE IS DIFFERENT!  And we, as a family, have learned, and are learning to embrace her difference.  
So this evening I am getting her to do her talk again for us and we will cheer an clap and tell her how amazing she is that she can create and find joy in her creation...

Lesser spotted ADHD girl in her natural environment.

So my daughter's homework this week was to join in Earth hour and write about it.  This is when you turn off electricity in the house for 1 hour and do something else.

Not a hard homework you may think, however, remember the ADHD???? Imogen doesn't take meds at the weekend, so it has been fun! I thought I would write my own report of Imogen's earth hour to give you an idea of the travail!

So 4pm, we look at the homework and decide to get her reading and other bit of homework done, then play a game.  So off we go, first thing is to decide what she will say in assembly about her robot and robot dog that she made out of cereal boxes.  This task was not too arduous as she told me what she would like to say and I wrote it down.  This took us up to 4.15pm

At this point I suggested she chose a board game to play, get it out and then we do her reading before playing.  So off she goes to the games cupboard (in the dining room).  I see her again at 4.33pm!

She sits down and reads her book, again, not too bad.  She is finally making some progress.  We finish the 6 pages of reading (only a sentence per page) 10 minutes later.  4.43pm  She decides she no longer wants to play 'Sorry' the game she got out.  
I say that she should start writing something for her earth hour work as the time is going.  She strops off with the game and I see her again 10 mins later with nothing, though she says she has some Hama beads ready.

We still haven't done her intensive targetted word learning (4 words to focus on a week) or her letters and sounds work (she hasn't the capacity to cope with this, so actually I am not going to bother with it).  I look in her yellow letters and sounds book and find a note from the Teaching Assistant who teaches her group, it says 'Could you please practise your spelling.'  (No question mark I note - its not a question, more of a command!!)  I suppress the urge to write 'NO!' in capital letters and just push the book to one side and go in search of my daughter.  By this time it is 5.15pm and she hasn't started her writing about Earth hour (though she has easily filled an hour with nothing!!!)
She comes back into the room where her paper is waiting and spots a fox out of the window, an easy distraction.  I try the desperate 'You could write about the fox?' suggestion, but no, she does pick up her pencil but starts writing about church this morning.  My husband interjects, 'You can't write about church we had the electricity on for the music group and projector, so it doesn't count.'  She leaves the room in a strop. 
I give up and start writing this entry!!!! Ho hum.  5.43pm What did we do in Earth hour???  Hahahaha, I observed the lesser spotted ADHD girl at work in her natural habitat!

A bit of the journey to bring you up to date....

As a family we spent a number of years in Central Asia and then ended up in the UK.  I thought it might be useful to share a little of that story to bring you up to date....

We were living in the capital city of Kstan and were leading a drug and alcohol rehab centre.  Every thing was going well, we had friends, we had a good ministry, the family were settled, we were involved in the local expat school and everything was looking good.  I remember walking one day from our house to the local bazaar in the sunshine and although I was was stepping over the odd open drain I remember thanking God for bringing me to that place and for being happy.  Now, if you are a happy go lucky kind of person, then maybe that wouldn't be such a big deal for you, but for me it was.  I have always been quite a deep thinking morose kind of person!  It takes a lot to make me laugh - I don;t know why, I wish I had a lighter spirit, but I just don't.  I have discovered that strong sunshine and warmth seem to help, so maybe that is why that particular day I was in a joyful place.
At this point in time my kids were 4 and 3 respectively, and a real joy.  They were in that chatty, fun phase where everything was an adventure and something to be discovered.  My son was into everything and boxes, cars etc all became something else in his imagination.  My daughter walked and talked at 10 months and at this point was telling stories and singing and dancing with the best of them.  Yes, she was strong willed, but we figured we were both pretty strong willed too.  
I had noticed a couple of small things during the couple of months prior to this day; her speech had become a little less clear, but she was hearing  Russian, Kz, Korean, German etc etc regularly, we figured she was just a bit jumbled up, and also her toileting had gone backwards a little, but thats not uncommon at 3 right?
Anyway, in the few weeks after this thankful day, I started to notice that her right hand wasn't quite right, her index finger wasn't bending properly anymore.  A couple of months after that and it was Christmas 07.  We were headed home for a 6 month homeleave.  It was to be a homeleave that became home stay.....

After we got home we went to the GP and showed him her finger.  He thought it was a plastic surgery issue and referred us, but that weekend we were talking to a friend who was also a doctor.  He very solemnly told us that we must go back to the GP as he thought it was a neurological issue.  That Monday we went back, the GP listened and within 2 weeks we were in a whirlwind of having MRI scans, lumbar punctures and more blood tests than I care to remember.  During the next month her arm seized up completely and was either bent uptight with her fist by her ear or bent out behind her in a very strange position.  She lost all control of her arm completely. 
It was about this time too that we went to her nursery school assembly.  The nursery teacher had mentioned a couple of times to us about her being strong willed and independent, but it was during this assembly that we realised that there was something markedly different between our daughter and her peers.  In the little presentation, on her face there was none of the normal apprehension that was seen on all the other children's faces, there was no fear of answering questions or shouting out answers, there was no understanding of wait your turn.  There was something clearly just not right.  We wondered to begin with whether she had just missed out learning some of the unspoken social cues that we learn naturally as we grow, because she had been in a different culture, but as the tantrums grew worse and longer and longer (45 mins minimum) we knew it just wasn't the norm.

After a few months the hospital established that she had some scarring in the basal ganglia in her brain and concluded that she had had either a stroke or some sort of encephalitus infection.  After we knew this we thoughtt that we were dealing with something that had got as bad as it was going to get and so we planned to return overseas to our home, ministry, friends and most importantly for the children, their dog and cat.  We booked our tickets to return in the summer and 4 days later we had a call from school (she as now in Reception).  Our daughter had had a seizure and had been rushed to hospital.  To be honest I don't really remember the day now, all I can remember is what others have told me.  She had been walking into assembly and carried on walking into another child when the line stopped.  A teacher told her off (thinking she was being silly) and she had gone into a seizure.  I will be forever thankful that her teacher in Reception was a wonderful woman, whose husband was a local pastor.  She put up with a huge amount behaviourally from our daughter that year and never stopped just showing love, her and her husband have become good friends.  

From that day on we started another whole round of testing, and trying different drugs and now 4 years on and numerous drugs later she is on a cocktail of 3 different drugs which still don't quite hold the epilepsy at bay.  

We still battled on, wanting to return to Asia, but eventually, after about a year of living in Limbo land (not a great place to be), we finally decided not to return.  
It was a huge decision, and one I still doubt sometimes.  I still struggle quite often with being back in the UK, but on the other hand when you hear a few months later that the religious affairs officials kept asking other in our company when we were coming to get our visas (after denying a number of others), I wonder whether our days in the country were numbered.  At least this way we have to opportunity to go back and visit, a denied visa would mean no return.
Eventually hospital staff stopped using the term seizures and started referring to 'her epilepsy'.  No one ever actually sat us down and explained what they meant and how seizures are different, or if there are different types of epilepsy - it was all a bit strange.
In the meantime, she was struggling through Reception, in her own world, fiercely independent, but struggling.  Constantly asking for hugs, but also tantruming for hours on end.  The only way to get her to stop was to wait it out til she was too exhausted.  We tried everything...one health professional after asking us to try different things (and witnessing the efforts) actually asked us if we had tried smacking her!  I tell you  - nothing made any difference!  We realise now that she had some major sensory issues but that can wait for another blog!! :-)  Eventually we got a Statement of Educational Needs, and diagnoses of high functioning Autism and ADHD.  It is a strange mix of relief and sadness to be given diagnoses.  One the one hand no one likes a label, but on the other, with a label, suddenly school staff had a better understanding of how to help, or knew what to go and read up about.  

And now, how do I feel about a daughter with ASD?  I love her!  She is quirky, she is different, she is socially vulnerable, she is loving, she is beautiful, she would fight to the death for something she believes.I worry, will she get anything out of school? Will she find love and not just guys that would seek to take advantage? Will she see God in life or will God/faith/eternal life be too abstract for her to grasp?   She sees the world very differently to me and makes connections in her thinking that I wouldn't make, but sometimes they are amazing, she is innovative in her thinking and I do wonder if one day she will amaze the world.  My fear is that our culture and education system will squash her spirit and self belief first.
 I guess my job is to make sure that doesn't happen! K x

Who are you?

Who are you?  Who am I?
I am a woman, a Mum, a wife, a sister, a daughter, a friend.  I am a Christian, a church leader, a teacher.
All of these things define me, but I am more than the sum of these labels and so are all of you.  

One of the things that defines me most is being a Mum of two.I have a son who is now 10, and a daughter who is 9 and has special needs. Specifically she has Dystonic hemipelgia (her right side is weak and her right arm and hand doesn't work at all), epilepsy, high functioning ASD and ADHD.  She finds life tough at times, but is an amazing inspiration too and so I find my mind is full with so much to think through.  

She is the reason for this blog.  Her name is Imogen Joy.  Imogen means 'to be thought of or dreamed of' and before I was pregnant with her (a whole other infertility story) a friend of mine had a dream with me feeding her.  When I had my first born, my son, my friend walked in to the room and said 'No! That's not the one!' and declared there would be another!  There was, just 14 months later!

She is complex and There are so many aspects to her needs, medical  - physio, OT, meds, botox, social interaction; schooling - teachers, TAs and how to relate to them as a parent, her interaction with her brother and her peers, academic progress, how to develop and learn to be independent, how do I know if I am giving my son enough attention as my daughter needs so much?, and oh so many more..... Then I have all the questions of how she fits in to church, and all the faith questions her needs raise in me, and in turn are beginning to rise in her, how do I protect her in an environment where people relate as if they are friends but may have only just met? - very difficult for an Autistic person to understand, how do develop a culture in our church that allows for ASD and ADHD? (which are on the rise and people with these conditions need to be welcome!  Jesus didn't say 'let the children come to me - except those who may not be able to sit still and be quiet!'  No, he was the most counter cultural, accepting of the vulnerable, teacher of the time, and that's what I want my church to be.)

But I want, no, need the opportunity to see past the questions, to see past the ongoing labels, appointments and diagnoses and to celebrate her, her joy, her vest for life.
So if you want to journey with me, to understand more the travails of a family with Special needs within, to encourage you in your own journey, or to celebrate and remember the reason we all have value, then join me!  It may not be pretty at times, in fact it may get downright messy, but come along for the ride!