A bit of the journey
I mentioned last time that we were in Central Asia and then ended up in the UK. I thought it might be useful to share a little of that story....
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 tlaking to a friend who was also a doctor. He very solemly 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 childrens 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 thoguht 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
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 tlaking to a friend who was also a doctor. He very solemly 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 childrens 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 thoguht 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
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