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...

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!