Monday, 31 December 2012

Theology and Justice

I love theology. I love my Bible. I was gifted with growing up in churches where the Bible was taught faithfully and where my love of what God has to say about the world around me grew.

As a children’s worker I explain the term “theology” as “What God thinks about stuff”. We learn what God thinks by studying the Bible. Simples! (To quote a well know meerkat) 

But quite obviously - we’re not God, and it’s often just our interpretation of Scripture that gives us our theology. I’m careful to keep that in mind when working and having fellowship with friends who may view what God thinks in a different way to me.

In short - I am fallible, along with every other human who wants to follow God. I try to bear this in mind when I hear others with a different point of view, by agreeing to differ on many things that do not affect our belief that Jesus is the son of God and is the source of our salvation.

Our organisation (Children Worldwide) has a diverse membership, with just about every flavour of churchmanship represented. In my opinion - this is healthy. It causes me to think, to sharpen my study of different subjects and to look at why I believe the things I do.
We unite on the important things and happily differ on the other things.

Over the last year I’ve seen lots of views on differing theologies, with people attacking others about various points of doctrine  - and I have been sad. I have ended up being disillusioned about the church nationally. Not with God - my love for Him and my faith remain firm.

I am sad because there are some church groups whose love for the Bible and theology appear to be more important than caring for the vulnerable. They comment on social issues from a so called theological standpoint and then do nothing to be part of the cure.

Yesterday I saw a tweet from Jamie Reed MP:
“7 years as an MP. Still waiting for a 'Christian' to send me a letter on child poverty. Plenty on homosexuality and abortion.”

I was horrified. That tweet really summed it up for me.

It is a fact that many churches are just ‘getting on with’ helping those who are vulnerable, in poverty and needing support - they just ‘do’ what their Heavenly Father commanded them to do…. Care. They probably haven’t written to an MP about about homosexuality or abortion either, because they are getting on with being Christ in their communities. I applaud them.

There are many ‘judgements’ made in the the name of theology, but only a few acts of justice.

I want to see that change.

My New Year resolution is simple - to gently challenge those who "judge but don’t challenge injustice".

My first example is this:

If you write to your MP about abortion laws, you must also write to him about child poverty, about the lack of care for children who will be born with additional needs - or better still, as a community, do something about it.

If you don’t want abortion (And I don’t), there will be consequences to that. More children with additional needs (Are your churches able to cope with that?) and more children living in poverty. There will also be more children in need of fostering and adoption. Are we up to the consequences of answered prayer.

Friday, 21 December 2012

Horror Statements

A UKIP candidate thinks kids with additional needs should be aborted (, and a mensa member  referred to those with an IQ lower than 60 as ‘carrots’ on the BBC (

Most of us gasped in horror at both of these statements - especially those of us who have family and/or friends with additional needs and disabilities.

It’s only right we should gasp in horror at these things!

But I have a provocative question for the Church and Christians in general - are we horrified enough? Or by our passivity in dealing with the subject of additional needs and disability, are we guilty of causing the same distress?

There is a wealth of info and training materials out there on making a difference for those who have additional needs and disabilities - especially in children’s work, and some are using them, and attending training events - but not enough. Some churches are engaging with these children and their families, but again, not enough. 

I speak at many conferences and training events. If we put on a seminar about puppets - the room is packed to over flowing. Put a seminar on about additional needs and we get a handful of folk (Strange when you look at the statistics of how many children have additional needs!) The only seminar that’s even less well attended is the one on prayer - which also says a lot!

There is a Biblical mandate to care for the vulnerable. We make lots of noise about caring for our communities, but if we can’t care properly for those who have additional needs and disabilities, we’re only caring for part of our communities. 

We also have a Biblical mandate to evangelize, but children with additional needs and disabilities are often overlooked in this too.

It’s a subject many in our churches prefer to skip over - and I for one would like that to change.

I’ve spent most of my (long) adult life wanting to change how the Church in this country cares for those with additional needs and disabilities - have you? The fact that you are reading this tells me you are of a similar mind!

Would you like to join a conversation on this? To create a vision for change?


Well that’s the whole point of the forum we are holding on Feb 1st in Eastbourne, which will be the start a longer, bigger conversation about this. But this won’t just be a talking shop - this will be a group of people with a passion and a vision for all these children are and can be. From this, I pray, will come change.
There will be further forums in different areas of the country, and an on-line forum to share ideas and work on a way forward.

This won’t be ‘my’ group - this will be a team effort, and the team will consist of anyone who joins.

Please - come join the conversation.

Thursday, 20 December 2012

A Record of God's Faithfulness

Every year, when we fetch the Christmas decorations down from the attic we say "Surely it was only last week we put these away...."

The year has flown by with great speed and little pause for breath. Together we've laughed a lot, cried a little and sighed when we've had no words to express our thoughts. We've hugged people, cried with people, encouraged them, sent many emails and driven many miles to be to people what they need - all this in the name of children's work, and keeping kids workers working with kids. We've also supported organisations in what they do and provided expertise where needed. It goes without saying that we've also done a lot of children's work! (A summary of our year went out in our Christmas Cards - you can download a copy here)

We have had a mixture of blessings and difficulties, both in the work we do and personally.

For me in particular, it's been an iconic year. Many things that I have had a vision for and dreamed about for years  are beginning to happen. It has been so encouraging to see my vision for children who have additional needs and disabilities come to fruition, to begin to get like minded people together and start to make a difference. I haven't been banging on lots of doors to make this happen - all I've done is pour out my heart about it and then watch things happen

God is indeed gracious.

At our council of reference we keep what we call a "record of God's faithfulness" A reminder that amid all the difficulties of leadership - God is still faithful. The list is getting very long!

Some of the things we are thankful for have another 'side', such as being awarded DLA over a year ago, allowing us to have a reliable car and a very useful rail card. This is great! But with the changes in DLA (Being changed to PIP) it does  cause a little uncertainty. I was given a permanent award due to the degenerative nature of the conditions I have, but I will now need to be re-assessed under the new system. If you believe the way things are reported in the press, if I was re-assessed tomorrow I wouldn't qualify for PIP (Which is slightly ridiculous!) BUT, thankfully I won't be reassessed for some time, and hopefully a lot of the negative side to the changes will have been sorted out and the qualification list will be more realistic. So there is still a need to be thankful!

(I am prayerfully aware of my disabled friends for whom the changes are causing severe hardship and difficulty - please join with me in praying for them)

We live by faith - our role as general directors of Children Worldwide is voluntary and squeezed in between our children's and consultancy work. Some folk sponsor us personally, our church gives us a monthly gift, and we are paid for some of the work we do (by no means all of it). In the last year we have lost a considerable amount of our personal funding - thankfully the DLA has  helped a little with this, but without it, things would be quite difficult.
Payment for some of my writing is helpful, but a lot of the work I take on costs us money to do, as those who need help and advice can rarely afford to pay for that help - but we remain convinced that getting the message out there about quality kids work and quality work amongst children who have additional needs, needs to be out there, regardless of whether people can pay.

We aren't destitute - we currently have enough to live on, and a personal gift that unexpectedly comes once a year pays for us to have a much needed holiday. (we can't rely on this gift always being there, but we are very thankful if it does arrive!)

There are other exciting things afoot for next year - the possibility of achieving more for kids, and especially kids who have additional needs and disabilities. Despite my own disabilities I can do everything I need to do - but I need to be wise. I need to know what to to take up and what to put down.

As we come close to Christmas and the New Year (Steve's Birthday on New Years Day!) We look back over 2012 with thankfulness - even for the hard stuff. We look forward to 2013, with a mixture of anticipation and a little apprehension. We have much to do, much to organise and lots to say.

Please pray for us - talk to us - hug us and encourage us. We 'give out' and care for people a lot - all willingly! But we rarely get asked how we are ourselves, so feel free to ask!

2 Corinthians 4:7-12

The Message (MSG)
7-12 If you only look at us, you might well miss the brightness. We carry this precious Message around in the unadorned clay pots of our ordinary lives. That’s to prevent anyone from confusing God’s incomparable power with us. As it is, there’s not much chance of that. You know for yourselves that we’re not much to look at. We’ve been surrounded and battered by troubles, but we’re not demoralized; we’re not sure what to do, but we know that God knows what to do; we’ve been spiritually terrorized, but God hasn’t left our side; we’ve been thrown down, but we haven’t broken. What they did to Jesus, they do to us—trial and torture, mockery and murder; what Jesus did among them, he does in us—he lives! Our lives are at constant risk for Jesus’ sake, which makes Jesus’ life all the more evident in us. While we’re going through the worst, you’re getting in on the best!

Wednesday, 19 December 2012

Carols? Bah Humbug!

I got myself into a little bit of trouble on social media last week.

My crime? I hinted at the fact I’m not too keen on Christmas carols - a truly heinous crime apparently!

I’ll start my saying I like listening to carols…. when done well. I love them done in their original form (Fire and Sleet and Candlelight by Coope, Boyes and Simpson is brilliant!) and hearing the Salvation Army Band is also awesome. 

I am not a Scrooge - honest! And this admission has nothing to do with being a musician and hating them done badly and like a dirge. (Although I do dislike that too!!)  

I concede that having a carol service can draw people into a church, and that it’s a great tool in working with our communities. Brilliant. I’m glad people do this sort of outreach.

But my comments are made as a children’s worker.

Many carols give a fairy tale view of Christmas - twee, pretty, sentimental etc, and we get the kids sings these carols in family services because it’s “sweet” and it gets them “involved”.

Yes, we tell them the true story with all the facts…... and then we make them sing something that is totally different. It can be very confusing for young children - even more confusing to our young friends with autistic spectrum disorders!

My God is big - He chose to come to earth in the form of a baby - weak, helpless God child. He was a real child - that’s the whole point. He cried, messed his nappy and gazed up at his mum like any other child. THIS is amazing.

He grew up, He did awesome stuff, He pointed to God the Father and is the only way to relationship with God the Father, He did no wrong, He died…. And rose from death. THIS is amazing

Many Christmas carols trivialize What God did (with a few notable exceptions!)

Why are we so surprised when people can only see Jesus the baby (Who apparently wasn’t a ‘real’ baby, because the carol said he didn’t cry….)

Why are we so surprised when children relegate the greatest story in history to the level of a fairy tale along with snow white?

Why are we so surprised with reports like this from the daily mail where people can’t separate fact and fiction in the nativity story?

I WILL sing some carols this year, and I will rejoice in those ones that give me a glimpse of the bigger story. But I will continue to cringe at those that trivialize what God did.

This is because I care for our children and I want them to have a clear understanding of who Jesus is, along with how He came, the reason He came that way and the consequences of Him becoming human.

Monday, 19 November 2012

Idiots Guide to making church accessible….Worship

When we talk about accessibility, the obvious things are wheelchair ramps and lifts, but there is so much more!!

By accessible we mean more than physical access to a building:

Can those attending your church access worship? The teaching? The coffee? Do they feel guilty because of terminology?  That’s just a few of the things we can think about when we look at making church accessible. Is your website accessible too? Is there information about how those with disabilities can access what you do?

In this post, I’m only going to look at one aspect of accessibility. I may cover other areas later.

Let’s look at ‘sung worship’:

Most will think this is just down to being able to read the words on the screen. Yes, there are issues there, but there are others too.

Do you provide large/giant print words? 
Think about the following:
  • Are they large enough?
  • Are they in a sans serif font? Serif fonts are difficult to read for those with visual problems and also for those who have dyslexia
  • Have you used italics? It’s best not to - they aren’t as clear to read (Yes I know I’ve used them here!)
  • If the song/hymn covers two pages, have you put the chorus on both pages? Having to turn the page back and find your place on the page again is difficult.
  • Are they the ‘right’ words? Some hymns have variations, and some have the same title as another song. If the large print words are prepared by a different person to the one doing the presentation slides, sometimes the wrong song or words make their way to the large print folder!
  • Is the page ‘clean’ or does it have the look of a poor photo copy with bits and blobs over it or fuzzy words? Having these things on the page can make them difficult to read.

How do you introduce worship?
Think about the following:
Are the first words something along the lines of “We’ll all stand to sing….”. Well, actually, some of your congregation may not be able to, and often find phrases like that unhelpful. Many of my disabled friends really appreciate something along the lines of “Stand if you’re able”, and if you’re the sort of church who “remain standing for the next song” it’s helpful to say “If you would like to remain standing….”  Inviting people to worship with suggestions that they may like to stand is much more helpful.

Announcing the next song/hymn is also helpful, or else those unable to see the screens will find it just as the song is finishing.

Do you have a fixed place where those who use wheelchairs or have poor mobility have to sit, or do you give choice?
Think about the following:
  • If those who need to be seated for worship and use screens to access song words, be aware of those standing in front of them - they won’t be able to see past them. 
  • If they opt to sit at the end of a row so they can see screens whilst seated, and you are from a church where people move around and raise hands in worship - look out for those who move into the aisle and don’t realise they are blocking the view of those who are seated.
  • For some wheelchair users or those with mobility difficulties, sitting at the front isn’t always the solution, as looking up at a screen gives neck pain. (Plus, for those with complex syndromes or hidden disabilities the brightness of the screen can also be a problem)
  • Be sensitive to those for whom volume means pain - not just to the ears, but also the base notes pounding through their body. Give advise as to the best place to sit if you know this could be a problem.

There is also specific advice for those who have autistic spectrum disorders and worship, which really needs to be a separate post. Do ask the person what is best if you have someone who is finding access to sung worship difficult due to autism. You could also look at the Oxford diocese booklet "Welcoming those with Autism and Asperger Syndrome in our Churches and Communities" downloadable here

As an aside:
If you put the songs being sung that day in a folder for those who can’t see the screens, how about putting the bible reading and responsive prayers in there too?

Wednesday, 14 November 2012

Today I Choose Gentleness

Do you ever feel overwhelmed by opinions? Not your own, but the amazing avalanche of everyone else’s thoughts?
I do

I’ve been amazed at the ferocity of opinions on all sides of many debates. I’ve seen Christians metaphorically tearing lumps out of each other in the blogosphere, on twitter and even Facebook - just because of opinions. 

Opinions are good and everyone has them - that’s life isn’t it? God created us as individuals able to reason and form opinions. We need them, they show who we are and what we stand for. 

I have many of my own! The thing is - I dare not share them. 

I try not to let my opinions influence how I see others and I am happy for others to have an opinion of their own - it shows they think things through, and in my mind that’s a good thing.

But I struggle with how others deal with some one else’s opinion when it doesn’t match theirs.

We’ve been studying 1 John in our home group - brilliant! But it has made me increasingly aware of how in some circles Christians will not love their ‘brother’ if they have a different opinion.

Maybe social media just magnifies the problem - or maybe love is draining out of the Church? I don’t like either scenario, but the latter scares me rigid.

I love my church, and I feel loved in it - There are lots of opinions there, even in the leadership and it makes for a healthier church. I feel safe there and I know I am fortunate to be able to say that. But out in the big world wide Church, I often don’t feel safe.

I don’t feel safe to say what books I’ve read, what my politics are, what my thoughts on women in the church are, how I view predestination and God etc, etc. I know that if I said exactly what I thought about these issues on twitter - I would lose half my followers. Clarification here - I’m not that bothered about how many followers I have! BUT, I would be more concerned that I had been trashed because of my opinions with no regard to my faith and my love for God.

It’s sad to say that my opinions are respected more by family who are not Christians than some of them who are.

I have even been asked not to help/speak on a Christian kids camp anymore because of other peoples opinions on women.

I have been horrified by people saying they won’t sing a certain worship leader/songwriter’s songs anymore - not because of poor theology (And for this writer - It’s very good theology!) but instead….. because they don’t agree with their politics.

You know what really worries me? 
There are two things: The fear that I am becoming just as judgemental - I spot it sometimes in my occasional quick and angry responses to things. 
But even greater is the realization that all this arguing is squashing my joy in loving my wonderful Saviour, because all around me I see battles that should not be battles, arguments that should be loving discussions. Then there's the thought “am I really that wrong?!” causing me to question my own faith.  In short - I am sad. Very Sad.

What are we teaching our children?? What are we showing our friends and family who do not yet follow Christ?

Today - I choose not to be adversarial  - instead I choose gentleness. It has always been my preference to be gentle. I want it to remain so.

Tuesday, 6 November 2012

"Thankyou Jesus You're My Friend" Amazing Stories Series (#1)

Around 20 years ago at a  large event, I was charged with looking after a 9 year old boy who had Down’s syndrome - he was what we affectionately call a “runner”. He would have given Houdini a run for his money in the various ways he could find to try and escape! This was in the days before children’s groups had specialists on their teams, so it was rare to be given a role like this. I was given the role because the leader of the team knew of my training and vision.  

Because I was also a musician I had to sing/play in the band. This meant I had to leave my young charge by the OHP (That dates this story!!) with another team member, where he would help with the song words.
Looking from the outside, it appeared he had no interaction with the spiritual side of the programme at all, and very little with the rest of the programme. It was hard work!

We used a lot of makaton signs as actions for songs, but this young lad would not sing or sign for the whole week….. That was, until the last day. On the last morning, with a big grin on his face he signed “Thankyou Jesus, You’re my friend” along with the song we were singing.

For all his appearance of not engaging, he had taken a profound message on board.

There were other positive things that came out of this: That particular team decided to make additional needs carers a permanent position on their teams. I also wrote to the head of the event - it was a very ‘frank’ letter about the need for looking at better additional needs provision within the children and youth programmes. I didn’t expect to get a reply - but I did. And year on year the additional needs provision grew and improved to the excellent work they do today. 

I’m pretty sure that other’s wrote letters about this too, so the change wan’t just down to me…… but I am blessed by the fact that I am now the disability and additional needs advisor for that same festival. 

This is just one story of one child who has made a difference. He doesn't know it, and I doubt his family do either.

Over the next few days I hope to post a few more encouraging stories about working with children who have additional needs. I have so many to choose from.....!

Wednesday, 31 October 2012

The Story Behind the Forum

On 1st February there will be a forum for any one who works with, or has an interest in, children who have additional needs and their families. (Details Here - Book Here)

Anyone who knows me knows I am passionate about facilitating children who have additional needs.  I want to make a difference. I want things to change. The thing is - I’m getting impatient and I want things to change more quickly.

I want people to catch the vision. Not a vision for tackling a problem but a vision for facilitating children who have additional needs to find faith, to grow in faith and be all that God has created them to be. 

And I’m impatient for more people to catch that vision and spread it.

I have story upon story of faith from children who have additional needs, I have stories of parents in tears because of the gratitude they feel when people ‘get it’. I have the written vision of a parent who wants their child who is severely autistic to walk with God and serve Him - a powerful missive!

Yep - I’m passionate about this….

It all started when I was 14 years old and helped on a camp for children who had physical disabilities. It was run by the church I attended at the time and children were turning to God. But - it was difficult to link them to churches local to them as those churches just couldn’t cope.

It also occurred to me at that time that when you looked at how many children had an additional need in our communities, it was obvious that this was not reflected in our churches and ‘The Church’ was poorer as a result. It is still the same today over 30 years later.

From that point on I knew what I had to do, I trained as a nurse and specialised in caring for children who have additional needs of every variety. There was an urgency to what we were doing on the camp I helped on as a teenager, as many of the children had a very short life span. Later, as a nurse I had the ‘privilege’ of being with some of them as they went to meet their creator - sad for me, but what was more troubling was those children we just couldn’t reach in time. 

I’ve held too many dying children for me to just sit back and do nothing.

21 years ago…. God called me to be a Children’s evangelist, and He left in my heart that burning desire to do something.

Whilst there are pockets of excellent work with these children and lots of organisations doing bits and pieces, it still isn’t enough. I still hear stories of children and their families turned away from churches, I still hear of evangelism policies and plans that don’t include intentional outreach to children with additional needs. I hear of schools work set up, but no one even thinking of going into the ‘special’ schools. I still hear of children treated as a problem rather that God’s creation. These children are in our communities, are in our schools and have families who are often in crisis with no help in sight.

I want that to change. 

This year the damn finally burst. At the Children Matter forum in May I poured my heart out about this. I wanted to pull together every one who would listen so we could do something. I want the best for these children!

Are you with me?

Well that’s why we are organising this forum. We want to start a conversation that will begin a process of change, not just for the children but for their families too. Yes, there are people out there doing some great stuff but we need to be talking together and working together to achieve even more… spread the word and make a bigger impact.

Tuesday, 30 October 2012

The church, Savile and Child Protection

The newspapers, TV and social media have been alive with information about Jimmy Savile. We all agree it’s terrible, and we’re all wondering how he managed to get away with so much for so long. 

In the early days of this news breaking some people pontificated about why the “Alleged Victims” waited until after he was dead - that comment on it’s own shows how many people just don’t understand the issues facing those who have been abused by a high profile person (Will I be believed? They are so powerful, I’ve been threatened etc). 
As it turns out, a few of his victims did speak up - but sadly, for many reasons, nothing was done.

But I’m not writing here about the failings of all those involved in this, people and policies that should have kept so many young people safe. I want to talk about how “The Church” is going to respond to it.

The temptation is to shake our heads sadly and assume it only happens “out there” and not in our nice comfortable churches.
I commented on social media last week that ‘The Church’ in this nation should “...sit up, listen, take note and learn. Most importantly... Act.”

By act I mean three things: 
  1. Act - have a safeguarding policy, it will go a long way to preventing abuse. 
  2. Act - If someone makes an allegation, do something about it. Your safeguarding policy will tell you what to do. 
3. Act - If you have a survivor of abuse in your church family, support them. If you don’t  know how, then get some training.

I want the church in this nation to learn from the mistakes behind the whole Savile saga.. 
It’s wrong to think it wouldn’t happen in a loving church community - it can. To think that is wrong. Sadly, I know all too well how people in leadership in churches can ‘get away with it’ and how the victims can be left feeling they have no voice. I know survivors...and those who didn’t survive.


It could even happen in a church with a very good safeguarding policy - CRB checks are good, but not foolproof. We always need to be on our guard. I’m not saying we should view everyone with suspicion before we’ve even welcomed a child into our churches - that would be wrong. What I AM saying is - be aware and be ready - just in case.

Church - please listen. 

Make sure you have an up to date safe guarding policy, and then make sure you use it. Don’t just leave it on the shelf gathering dust. 

Make sure everyone in your church knows about it. Do safeguarding training regularly for those involved at any level with children and young people.

Inform the parents of children who attend your clubs that you have a policy - put a statement about it in all your information.

Display the child line phone number at child eye height in your church buildings, and if any one says you should’t do this because it encourages false allegations - ignore them. I’d rather see the complainer ignored than a child who has been abused. (Aside from that - it’s just not true)

As well as the usual checks, use supervision as one of your main safeguarding tools.

Have a clear and simple whistle blowing policy

Don’t brush things under the carpet - shine God’s light on stuff and act (Whilst still maintaining confidentiality for the child/young person) 

Don’t use this as an excuse NOT to do children’s work or youth work. If it stops your children and youth work - you’re doing something wrong.

If you know nothing about safeguarding, have never heard of child protection but want to do do something - contact the professionals for help - they’ll be happy to help you.

I’ll say it again:  Church, please...sit up, listen, take note and learn. Most importantly... Act.

Friday, 28 September 2012

I Have a Dream......

Let me introduce you to Gemma….

She’s 8, is autistic and love’s Jesus. But sometimes - she doesn’t love Jesus.
Sometimes she can be profound with her comments about Jesus, sometimes she just doesn’t want to even talk about Him - preferring to play with some lego, giving the impression she’s not listening. But she is listening.

I don’t understand how her faith journey works - I know God does. Her journey is important to me, the fact I don’t understand it isn’t.

The other thing that is important to me is how other people view Gemma and others like her. 

Mostly, she is ignored. 

The times she is not ignored are those times she makes a loud comments in church (Usually, an appropriate comment!). Or when she struggles to wait in line for a drink or a biscuit, or cannot wait her turn in a game - maybe shouting out an answer during the children’s talk in the main service. In other words, those times when she goes against what us “Nice” Christians consider to be appropriate behaviour in church. Other than that - she is anonymous. 

No one notices the depth of her faith, her amazing knowledge of the Bible or her ‘straight to the heart of it’ prayers. No one notices her parents either, even though they are desperate for support and conversation.

The same goes for many other children and adults with special needs or disabilities - they and their families are anonymous and ignored. 

I often quote Joni Eareckson-Tada: “The Blind can see with the eyes of Christ, the deaf can hear with the ears of Christ, a person with a learning difficulty can think with the mind of Christ”. This is so true, but who listens to what they have to say about it?

Everyone has their own thoughts, ideas and opinions, things they feel strongly about - those who have disabilities and special needs, child or adult, are no different. And surprise, surprise - it’s not always about disability!

I have a dream - I want them to be heard. I don’t want them to be anonymous anymore.

Saturday, 1 September 2012

When Children Don't Want Jesus In Their Heart Any More

We adults have our own view of all things theological, we like to get it sorted in our heads and pass on what we think to the children. Sometimes we’ve wrestled with it ourselves, and sometimes we have just accepted what the previous generation told us - because we have never been required to test it for ourselves. Sometimes we forget to let the children wrestle with it for themselves, to ask questions - and not be afraid to ask them.

Many people are shocked when children question, as though we think they are rejecting all the wisdom we have passed on because of their questioning. But questioning is healthy. It helps a child to own their faith and grow in it as they journey, rather than getting to university and thinking “So why do I believe this….?”

I’ve written on the subject of how children view suffering and God before, and had a lot of theology thrown at me as a result. There were lot’s of different views, some of the readers rather surprised that I needed this subject explaining to me and set about trying to ‘correct’ my theology. I didn’t need it explaining or correcting - I never said I did. What I did question was how we help children who are suffering, as I felt they needed it explaining rather better than we do! I felt we should’t be saying  “this is the answer - lump it”, but rather - “these are different ways of looking at it” and giving space and permission for anger and grief, a place for asking questions of both us and God.

Last time I wrote on this I talked of how I have had angry conversations with God about things and I got responses from readers along the lines of “Until I accept that these things are God will...then…. etc, etc” I was cross with these responses - and I have a firm faith. So just think how a questioning child would feel with this response?!

I have seen the faith of too many children smashed to pieces because of poorly thought through theology pressed on the child when they are not in a place to hear it. To tell a child who has just lost their mother that they should be happy for their mother - because they are in heaven is crass beyond words….. but I’ve heard it said! The same child was told within days of losing her, that their mother’s death was God’s will. Ok - that might be your theology, but please don’t say it to a child who’s mother died in a car crash days before.

During my first year as a children’s evangelist I had a 7 year old girl in a small group. She was a Christian, but struggling with coming to terms with some horrible stuff happening in her life. I will never forget her screaming at me, whilst grabbing at her chest repeatedly; “I don’t want God in my heart any more, I hate Him, I hate Him, He doesn’t work”

Sometimes there comes a time when we have to stop trying to explain God’s reasoning (Only God knows that!) and just hold the child and cry with them….. And not be afraid to admit that we just don’t understand. That’s what I did.

After I have cried with them and allowed them to shout - I don’t try to explain God…. Or make excuses for Him - that’s not for me to do. What I can do is help them to hold on to God in the middle of their crisis. I will talk theology (What God thinks about it) when they are ready - and want to talk about.

What I want for them is to find God in the depths of the pain, to give them the resources to eventually allow God to redeem the situation, to hold them and to comfort them. Before we can say anything else, they need to know more than anything that God still loves them - even in the depths of their despair and angry questions - they are within that love. 

Think of the song ‘Father God I Wonder’. I love that song - but have you ever tried to sing the chorus from the middle of a deep crisis? When the last thing we want to do is ‘Sing God’s praises’? It’s difficult to do - especially when told that this is “God’s Will”. But it seems we expect kids to happily do this.

With older kids, and this song in mind I have sometimes talked through the occasions I have sung it, not wanting to praise God, and yet at the same time - determined to praise Him, just because I am still aware of God’s love. The gritted teeth, hands clenched, tears streaming down your cheeks version where you sing “I WILL sing your praises”. This is usually called a ‘sacrifice of praise’ and it’s not easy, but it is often the first step to allowing God into the grief and the pain.

It’s good to share your story - not to say that you understand, because you can’t…. They are not you. Tell it to say “You are not alone, you can talk to me”.

I am not a professional counselor - but like many of those who work with children, I am often the first contact for a child in crisis. I will always suggest counseling to parents, but I am also aware that my initial response to the child is key to gaining their trust for the future.

You’ve probably guessed where my theology on suffering sits :o) Your theology may sit in a different place, and that’s fine by me. 

The purpose of this blog post is not to compare theology or war scars - it’s to fight for the faith of the children I love and serve.

Friday, 31 August 2012

When Is It Right To Be Inspirational?

Some of my disabled friends dislike the word “Inspirational” in connection with the Paralympics.

I will attempt to paraphrase why they think like this in a few sentences: 
People will look at those whose disabilities prevent them ever being able to achieve what the paralympians do, and say “They can do it - why can’t you? They can run 100m, and you can’t even get a job.” Comments like this are rarely made to an out of work twenty something who doesn’t want a job. There is disparity, and my friends believe the word “inspirational” compounds the problem.

I am not getting at those saying this. It is a very valid opinion. It probably needs saying! I know that this word is often used in a patronizing way, seeing the Paralympics as a bit of a freak show, and look - the freaks are doing amazing things…. Isn’t that nice for them. I find THIS attitude far more worrying!

No - I’m not getting at those with this view - I appreciate it…. But the topic is a gift to a writer, and I am going to use it as a launch pad to make some other comments that follow on nicely!!

Yes - I can see where my disabled friends are coming from, but I am hoping (probably naively) that our nation will see that just like able bodied people, disabled people come in all shapes, sizes and abilities. There are able bodied AND disabled people who will never get a gold medal at the olympics/paralympics, never get a Phd in astrophysics or never be able to hold down a long term job, in the same way there will be both disabled and non-disabled people who will do what those looking on describe as inspirational. 

What I am hoping for is the people of this nation seeing there is a person beyond the disability, the only difference between us is…... the disability. We all have the ability to be happy, sad, grumpy and intolerant. All of us can both struggle and achieve.

People in my world (of kids and family work, and advising on disability) often use the word “Inspiring” of me. I don’t mind. I am not in the least offended by people saying “If you can do it, I can do it”.  I want to inspire those who are non-disabled and disabled to be all that God wants them to be. That might be the person who makes the drinks for the kids at their club or the well known kids evangelist. If both are inspired to do what they do to the best of their ability in service to God, then that’s great…. And it’s also worship. I’m happy to inspire. I don’t set out to inspire people to do my particular job, but God uses me to inspire them where they are. I am disabled - I will never run 100m (Although I did get the high school record for that - the fastest, not the slowest!) But I can be inspirational where I am. 

I am inspired by Amy Carmichael - she had a disability and I am inspired by the way she dealt with it. But I don’t expect all other Christians who have disabilities out there to be the same as her…. or me. Amy was Amy, and I am….Kay.

I have had the “I” word used in a patronizing way too, using the word brave along side it. I’m not brave - I haven’t chosen to have permanent pain and uncooperative muscles, Bravery is choosing to do something in spite of your fear. But what I do choose to do is to respond in a gracious way……

When people are intolerant or patronising with me, I refuse to sink to the same level - I will choose be tolerant with them (although I’m often tempted to be patronsing straight back at them!)

On the other side of the coin, I’ve also been shouted at by people who think I am treating those with disabilities in an unfair way and by those who think those with disabilities are getting an unfair preference, all on the same night in the same venue when working as a disability consultant. I’ve even had both of these complaints from within two different areas of disability! 

In my role I see both sides of the argument - it is a unique view!

On Sky news, on the night of the opening ceremony to the olympics, there was a gentleman who is blind being interviewed. He was great! He said many quotable things that mirror some of my own sayings: “Many disabled people are now throwing things at their TVs because you [the interviewer] described yourself as ‘normal’. Well people - get over it….!” His view was to comment, and move on.

Many folk will find Channel 4’s Paralympic programme “The Last Leg” offensive - but I found it hilarious!! Their humour refreshing.

I too have many pet hates - I don’t like being lumped into the phrase “The Disabled”, I hate people talking over my head. I don’t like people in airport queues saying as I’m wheeled past them “I’m going to feign my own disability to jump the queue” (They don’t see how long I have to wait to get OFF the plane!) I hate people assuming that I can’t do my job because my muscles won’t cooperate, and I REALLY hate being patronized.


I am not the centre of the universe. If I am to function - I have to let it go…. I have to “get over it”. Unfair things are said to people who don’t have a disability too. If I am to change the world’s view of disability I have to move on.

I have achieved far more in changing things for those who have disabilities by being pleasant (and possibly ‘inspirational’!) than I have by stamping my foot and being grumpy about the world’s attitude.

*Disclaimer! There is a time to be angry and to shout - what is happening with changes to DLA is just one of those things. But I believe we have to reserve that anger for the big things - and deal graciously with the others. It will have a much greater impact that way :)

Thursday, 30 August 2012

What did you think of the Paralympic opening ceremony?

So what did you think of the Paralympic opening ceremony?

It was technically brilliant. All the volunteers that took part were awesome and inspiring - the skill involved was breathtaking. It was signed too - wonderful! To look at, it was spectacular….

What about the message behind it? 
It told us of our scientific back ground. 
It told us to explore. 
The quote “Look at the stars, not at your feet” - a call to be all that we can be.
The closing song “I am What I am” the common mantra of today’s world. 

This was inspiring a generation to achieve, to look only to themselves and to say to the world “I Am What I Am - deal with it!” (In the context of acceptance this is great, but in the context of “I’m not prepared to change” it can be selfish.)

But where was the hope? The hope of a future, the hope of a generation. Sadly, I saw no hope.

I saw joy - the joy of achieving, of taking part, of making history, the sheer ecstasy of just being there. But what about when it’s all over - what then? It’s then that hope is needed most. The children who have been and will be inspired because of the Paralympics need more than “I Am What I Am”. They need Hope.

In the Olympic opening ceremony of a few weeks ago, there was a clear “God thread” as the “story” unfolded - the church’s influence on our history clear. But in this opening ceremony we saw the opposite - it appears in this instance that when it come to history - the Church has no part…… I wonder why that is….?

Wednesday, 29 August 2012

Beyond the Paralympics

Over the next couple of weeks we will all be ooo-ing and aaah-ing over the achievements of those taking part in the Paralympics. It’s all nice and warm and fuzzy - and why should’t it be?! This is something to be celebrated, and I for one will be watching as much as my work load allows.

There is work going on amongst para-church organisations to use the Paralympics to raise awareness of disability in churches - going beyond the ramp and a warm welcome, but actually including those with disabilities and additional needs fully in the life of the church.

But what happens when it’s all over? For a while, we will be inspired. To quote the Olympic catch phrase, a generation will have been inspired too. But for how long?

Here’s some things that may take this inspiration beyond the Paralympics:
  • The Disability Sunday pack - written to be used during the event, but easily used on any day. It may fit better at a different time of year for your church, or you may have only just found out about it, but please - use it. 
  • The Enabling Church study book - ideal for churches who wanted to take a fresh look at what the Bible has to say about disability and become equipped to be more inclusive. 
  • I know of another book currently going through the editorial process - one that I have had the privilege of writing one of the chapters for. I’ll give you more information when I have it. 
  • Have a look at the Livability page "Your Church And Disability
  • Scripture Union do ‘Additional Needs’ camps (The link takes you to the camps just gone - but you can request a brochure for next year) 
  • My own organisation (Children Worldwide) will be doing a weekend retreat for families who have a child with complex medical needs and mobility difficulties. See the page about "Latitude
  • Both Urban Saints and Children Worldwide have people who can run a training event for churches who want to know more about children with additional needs and disabilities. 
  • Churches for All have contacts who would be happy to come a do training on any aspect of disability for your church. Have a good look around this new look web site 
  • If you want to see a good example of disability information on a website, have a look at the National Space Centre in Leicester - the info is helpful and clear and the centre itself is completely accessible and welcoming. Let’s get the churches in the UK doing this even better! 
And books for Kids:
  • Some fantastic Books by Victoria Beech and the Paediatric Chaplaincy Network (Scroll down the page when you get there). Tackling subjects such as life limiting illness, hospital stays and the death of a sibling.
  • And one little gem I've just found - Rebecca Elliott: "Just Because"

Monday, 6 August 2012

Are We Inspiring a Generation?

For the first time ever, the catch phrase for the Olympics and the Paralympics is the same: “Inspire a Generation”. It’s a good phrase!
All over the world, the younger generation are being inspired by positive role models who are competing in the Olympics, and the same will happen when it comes to the Paralympics. The torch is being passed on to the next generation. (I loved that bit of the opening ceremony!)

I hope that all of this rising generation will be inspired by both events. That not just disabled youngsters but also able bodied youngsters will be inspired by the Paralympics.

But what about us as a ‘Church’? 

Are we inspiring a generation? Any generation?

For all the children and young people in our churches, disabled or not, additional need or not, are we inspiring them to go forward in their faith? Are we giving good role models for them? Are we inspiring an older generation of people who have disabilities to go forward with God? Do we even have a vision for this?

How do we see those with disabilities and additional needs and are they even on the Church’s radar? Sadly, for most churches they are not. When you look at the figures of how many people there are with disabilities in our communities, it is easy to see that our churches do not reflect those figures….. And it’s not because they all get healed!

When the world is watching the abilities of the Paralympians rather than their disabilities and applauding their achievements, how is ‘the Church’ viewing those with disabilities in their communities? Are they seen as people who can be giants of faith, able to serve as well as receive? Or is it a case of a perplexed “what disabled people….?”

I’ve been speaking out for children who have disabilities and additional needs for over 20 years, and in the area of children - inspired by a generation of children’s workers, things are happening. More and more churches are trying to include youngsters with disabilities and additional needs. For these people I am extremely grateful -  they truly are inspiring a generation of children with disabilities and additional needs and building them up in their faith. But what happens as our children grow up? Do we have the same heart and vision in our youth and adult programmes?

Maybe as these children grow, the Church will sit up and realise that something needs to be done, to see that working with these young people and adults is a valid ministry. I believe that our churches need to be ready to welcome those with disabilities rather than being surprised when they come. I want those with leadership responsibilities to look at this issue properly rather than skip over info and posts about disability.... as seems to be the norm! (Apologies for my outspoken moment there - but that is how it feels to many people who have disabilities and try to access our churches)

Why not raise awareness about this in our churches now? With the Paralympics, the idea of disability will be high in people’s minds. And this is the thinking behind moving “Disability Sunday” to just after the event.

Have a look here for a ‘Disability Sunday’ pack, and look at inspiring your church to be a Gold medal holder for accessibility.... on all levels.... in all generations.

Friday, 3 August 2012

Recruiting to a vision

Special Needs, additional needs, disabilities, difficulties - what ever you call it, the issue in a lot of our churches is the same, and many children and youth workers up and down the country are struggling with it. 
We see the problem, and all the surrounding issues and feel that gut response of “How on earth am I going to cope with that?” All the work of doing week by week youth ministry is hard enough to cope with without this!
There is often an expectation for our volunteers to deliver a level of inclusion that even the most experienced specialist in the area of additional needs would struggle to do outside the church setting, and when it doesn’t work we get disillusioned. 
To practice a good level of inclusion is a week by week process, and how it works out in practice will be different for every child. Some will settle in with all the other kids, some won’t. Some will need a mix of time in the group and time alone. Whatever we plan could change at a moments notice and we need lots of flexibility.
To agree to help a child with learning difficulties in our Sunday children’s work at age five is one thing, but to transition them through our children and youth work and into adult worship is something completely different. It is a long term commitment that needs determination, love, wisdom and vision, and is a decision not to be taken lightly - it will be hard work.
Doesn’t that sound awful! 
Ok, let’s begin with another way of looking at this? Let’s move our eyes away from the problem we perceive and onto the gift we can give. On to a vision of what God can do, not only in the lives of the children and young people, but in our own lives as we seek to serve them. 
Don’t misunderstand me here - we need to look at practicalities, how to make the provision we give work. We need to make sure our volunteers are trained and ready too. But if our starting point is the problem and not God, where is our vision coming from? God needs to be central in the vision - for all we do, and especially in the work we do with these precious youngsters
You will no doubt be familiar the following statement: “Mum has asked if Fred can come to club…. Have you seen Fred?! He can’t sit still, he hates the noise and he’s totally disruptive. He’s always putting the other kids off! We need a one to one for him”. After that comes the conversation with a possible one to one buddy: “We have this child who is a problem. He’s totally disruptive in his class. Would you mind helping us out?”  This is what I call “recruiting to a problem”.
Wouldn’t it be better to say “We have a young person who is struggling with club at the moment. We want him to have a positive experience and want to find ways of helping him connect with God and be all that God wants him to be. Would you help us?” This is “recruiting to a vision”
What do I see when I look at a child with autism? Or severe ADHD? Do I see a problem to be solved or a child, made by God, who deserves to be loved and nurtured? Do I have a passion for seeing God work in their lives?
One of our Trustees was telling the story of a friend last week, who got to the point of saying to God “I don’t know what to do!” And God responded with “I know - watch me!”
It was different circumstances, but the lesson is the same.
Even before we start planning - should we be saying “Lord I don’t know what to do! Guide me!”
We need a vision and a passion for these children. It won’t be one vision and one plan for life - it will change and will be constantly moving with the young person. It isn’t a one size fits all - it’s a different long term vision and a different plan for every young person and every family.
The over-riding and central vision will be the same - That they would know and love God, that they would be all that God wants them to be, that they would be filled with the Spirit and serve God with all their heart, mind and soul….. I could go on! But there will be things God lays on your heart for a specific child that goes beyond the basic vision you have for all the kids.
May your vision and your passion increase as you continue to serve God and the youngsters in your care.

Some tips:
Don’t do it yourself if you are the key youth worker - appoint someone whose sole responsibility is ‘Inclusion’. Someone with experience, who is passionate…. and has a vision.
Recruit team to a vision, not a problem.
Be realistic about what you can achieve
Work with the young persons family to achieve the best for them
Remember that what works one week, might not work next week

Saturday, 7 July 2012

Today has been an interesting day!

Yep - today has certainly been an interesting day!

It’s been great to meet with lots of inspiring and gifted women who are leaders in a huge spectrum of areas. Some are speakers or writers, some are quietly leading in the background, some are leaders of organisations and others are out there campaigning to change the world for the better…. Some are doing all or a mixture of these of these things!

Confession time - Being in a room full of women is my worst nightmare! I find it threatening and uncomfortable. This is mainly due to some of my own history with various women, and the fact that way, way back in the past, some “Ladies events” I’ve attended have been less than inspiring(!) 

I’m thankful to say that this shy introvert really enjoyed the day  - it was ‘real’, down to earth and very encouraging, so thanks to all who organised it, those who came and those who spoke - you were all inspiring. It's great to see such passion about changing things for women around the world - not just in our little corner of it.

But - aside from all the vibrant discussion, I ended up learning a lesson I needed to learn. It had nothing to do with what was said (As good as that was!) It was all due to a phone that refused to work.

For a disabled person 100 miles from home, being in a city like London and without a phone is a scary thing. I can’t get on a bus because it’s too far to walk to get to where I need to be, so I need to use a taxi. I can’t walk to a main road to hail a taxi - I have to ring for one. I have folk at home who worry about me and want to know I have arrived safely, and without a phone I can’t let them know!

One wonderful lady offered her phone for ringing home - and I, a vehemently independent woman, said “No - it’s ok - I can email from my kindle!” But…… the kindle wouldn’t connect to gmail!!!

So today - I had to humble myself, and ask for help. To say “Yes please, can I use your phone” and then find  the wonderful vicar of the church to ask her to ring for a taxi for me (I would normally use an app on my phone to get a taxi…. But the phone wasn’t working…)

I probably should have admitted to being in a lot of pain too - doing two days in a row in London, with very early starts and the failure of booked passenger assistance, is hard work on the body, but I probably didn’t help the situation by trying to cope with the worries caused by a dead sim card, all by myself. 

Maybe this experience will teach me to lean on God more - I hope so. I also hope it will teach me to ask for help and accept that help (And not see it as a personal sign of weakness.) I also pray it will help me to form better friendships along the way - something I would love! 

On the train going home I deliberately listened to a great song called “You Are Good” (Spring Harvest’s Fresh songs Album). Not as a reminder, but as a confirmation of God’s goodness. He didn’t cause the dead sim card - but He has used it to good effect!! 

And the sim card? A new one will arrive on Monday morning, so here’s to a very quiet Sunday :o)

Sunday, 17 June 2012

Three Dads and a Father God

The following is my story, and my thoughts - they are mine to tell. It is a story of hope. Please be careful with how you use this story. It is my own journey - please don’t expect others who are also on this journey to be the same. 
In the same way that this is my own journey and response, others with a similar story to tell will have a different journey and a different response - one that is between them and God alone. By all means, share this blog with them in the hope of encouraging them. But please do so sensitively, taking care of what can be raw and real hurt, allowing God to take them on their own journey of healing.
It's Father's Day.

Fathers day, for me, is always tinged with many thoughts and emotions. I’ve had three earthly dads…. I only knew one of them, and that wasn’t the most easy of relationships!
Often I look at dads with their daughters and I feel a twinge of regret that I never had that relationship, and a sadness that I will never know it. I also have the sadness that as someone who is childless, I will never be able to make sure my own daughter doesn’t miss out on a father daughter relationship.
My first dad - my birth dad, doesn’t know me - he doesn’t want to know me either. I was born as a result of child abuse that happened in a little church in Essex. He has a family that doesn’t know I exist. He is named on my original birth certificate, and that’s it.
My second dad was a short term foster dad. 
Having been born in a mother and baby unit in the south (My birth mum was sent there to have me and told to have me adopted) I was sent to a couple to be privately fostered before being adopted. This was due to having a difficult birth etc, and I needed extra TLC before being sent for adoption. I had to be removed from this household in a hurry - I don’t know all the horrible details, just snatches. I have a sense that God is telling me I don’t need or want to know and to leave it with him. With this, I am quite content.
Then there was my adoptive dad. As I have said, this wasn’t the easiest of relationships, and many of the details why don’t need to be written here. He was never a responsive dad, he didn’t talk to me….. He was just there. So, I could never ask him ‘Why?’ And yet, on the day he died, God was gracious. Again, we didn’t say much. But in a nano second and one look, a thousand and one words were said. The only words spoken out loud were mine: “God knows and understands dad - He will tell you my thoughts, and He will speak to me what you couldn’t say”. Many years ago, someone had given me what some call “a word”. Now I’m not really into that sort of thing, but this has stuck with me. It was given by a person who didn’t know me or my situation. They told me that what had happened to me to me was wrong, that those responsible would never be able to ask forgiveness, but the holy Spirit was asking instead. As a result of that ‘word’ over 15 years prior to dad’s death, my journey of forgiveness had already begun.
So with all of this - how do I view God? How can I see Him as Father when I’ve never known a true father/child relationship?
Well, again, God has been gracious. I have never doubted God’s ‘Father relationship’ with me. I’ve seen what Fathers should be and been enveloped into families by good friends. I’m told this is rare - so I am doubly grateful!
Many Christians say to forgive and forget, and if I haven't forgotten, then I haven't forgiven. In love, I would like to say..... that is total rubbish!  I have forgiven, but why the need to forget? If the hurt causes you to build a wall around you, or affects your view of Father God, then there is a reason to deal with the grief of what happened and the loss of what should have been. But to forget would be to deny who I have been shaped to be. To forget means I cannot go to a friend who is struggling with similar issues and say “I’ve been there”.
To forget would also mean the following:
With my birth father: I don’t want to forget how God has redeemed such an awful situation. I’m not denying the pain of my birth mum here, but in that baby - me, conceived in such horrific circumstances, has come grace and beauty, a person with meaning in the world - a child of God. 
With the circumstances surrounding my foster father, I can see healing power. I don’t see the need to blame - and blame could be laid at the feet of many on this! I see again, a powerful story of redemption. I know of a Godly matron in that mother and baby care home who nursed me back to health and undoubtedly prayed for me. This comes across in the letters written by her in my adoption notes. I would love to be able to thank her and show her how God answered her prayers! This, I don't want to forget.  (Even though I was only a baby, I used to get overwhelming flash backs to the emotions of that time - these I am happy to forget!)
With my adoptive dad…. I am content. That’s it - at peace, and content. Mum often tells me he was proud of me but didn’t know how to say it. Despite other circumstances that she is aware of, she maintains that he loved me - and he probably did. Two days before he died he declared to a friend that he “understood what Jesus did and believed it”. In that small phrase comes hope. Hope of forgiveness for him. Hope of a relationship that is all it should be when we meet again in Heaven. 
As I’ve said - this is my story, unique to me. I hope it helps others, but I don’t expect their journey to be the same.  I am thankful for my Father God being all my earthly fathers could not be. I am thankful for his comfort through some very difficult times, and I am especially thankful that I came out of it relatively sane! (Apparently quite unusual!)
May you know the love of Father God today. May He bring you comfort if father’s day only brings hurt. And may you find peace in the journey back to hope.
NB: I feel the need to add a child protection note here - to forget can be dangerous too, especially  if it forces you to come into contact with someone who could continue to abuse you. As Christians, we believe in forgiveness and redemption, but when in comes to abuse - we need to be ‘real’ and sensitive too. To tell a survivor of abuse to forgive and forget is abuse in it’s own right. It’s better to get advice from experts in this field and save heaping even more guilt on the heads of those who have suffered enough already.

Wednesday, 16 May 2012

He’s Going To Die Anyway…..

It's a harsh title for a blog I know - but that's what this post boils down to - and it's possibly what made you click on a link to read it.

It's a post written direct from the heart, because I see kids with special needs and disabilities as beautiful, incredible and very precious. I know God sees them in the same way.

I have some questions: 
Who can Judge the quality of life of a child? 
Who has the right to say which child deserves to live and which should be allowed to die? 
And - just what is quality of life? 
Because a child cannot do a combination of things other children can do - does that mean they don’t have a quality of life?
In my mind - no one has the right to judge, especially when that assumption is based on what is perceived to be a ‘normal’ life.  And yet… people do judge on all these matters.
When I was nursing I came up against this a lot, but having been out of that world for some time I have been shocked recently by the attitude of some doctors to my friend’s young disabled child.
This little one has many medical problems and disabilities that I won’t go into, as I don’t want people to be able to identify mum and child. 
This child has a great quality of life! Having also been diagnosed as having severe learning difficulties on top of everything else, it has become clear that this particular diagnosis was totally wrong. But mum found it difficult to have that diagnosis removed so they could get appropriate schooling, sadly this diagnosis is sometimes still believed at the hospital, even though it is so obviously wrong!
This is a child, who on spotting mum was upset, communicated the fact that he had written a song. The words were “Trust Trust Jesus”, repeated. Amazing words - done in an age appropriate way, showing faith and concern.
This little boy is loving, has friends (and misses them when in hospital), is VERY cheeky, has a wonderful sense of humour, can communicate and can understand the world around him. This child is greatly loved by all who have the pleasure of meeting him.
And yet…. The doctors around him question his quality of life, and then question how far they should intervene because of this. One doctor said it would all end in tears and that the last couple of good years have been ‘a fluke’.  On another medical team, the attitude seems slightly different with suggestions of what they can do to alleviate the problems he is currently experiencing, but at the same time questioning the quality of life he has as a result of this particular problem. 
My friend is looking at ways to show that her child has a great quality of life - possibly with a diary with photos and comments from friends, but why should she have to do this?
She know’s that her child’s life is going to be short, and obviously that is a source of great sadness. But she and all her friends want to see the doctors fight to make that short life the best ever, not back away because they question that quality of life.
Let me make it clear that the doctors are doing nothing wrong! But… It would be good if they could occasionally see beyond the patient and the medical conditions -  and see the child.
I’ll balance my comments by saying that there are times when you know it is time to allow a child to ‘slip away’. As a nurse I have sat and held many children who have been in extreme pain, knowing the only level of pain killers that would work would kill them. I have held them and prayed over them, and then asked God to intervene. But even then, with a child in extreme pain, who could not speak, and had little awareness of the world around them - it was not my role to judge. I would often ask consultants to treat a child with dignity and respect in the way they chose to medically intervene, and also question eeking out the child’s life for another 2 pain filled weeks, just because they could. So yes - there are times when you have to weigh life and pain, but always alongside the parent’s wishes. 

For my friend’s child though - this is not the case. He has a great life, and he has the right to have appropriate medical intervention, based on who he is…. a wonderful human being.  It should’t be dependent on the assumptions of that child’s quality of life. 

Tuesday, 15 May 2012

Facebook Rage!

I don’t often say anything of any note on Facebook - I’m often quite bland! But every so often I put something on that causes some reaction. Usually this is because people either vehemently disagree, or don’t think I should air my views on Facebook.
The subjects of my last two statuses, I thought, were not that bad, but…. apparently they were! 
I dared to speak out about the contrast between young musician of the year (Lots of hard work and talent with a small prize of £2000 and very little news coverage) and Britain’s Got Talent (Yes - there's some hard work and talent, but a lot of hype and news coverage, with a ridiculously high half a million pounds prize.)
People who know me well know I hate talent shows on TV, but I also realise many people do like them. I was reminded a while ago by my friend (and mother of one of my God daughters) That there is very little on the TV that you can watch as a family, and this is one of those things you can watch. Sad I know, but that’s the subject of a different blog!
So - I’m NOT getting at those who watch and enjoy it, and I'm NOT getting at the show.
What I hate is the culture that is rising up around it - the get famous quick/get rich quick without the hard work and training culture, where hard work and caring is not celebrated.
I see this culture getting into many of our churches (Not all - I’m not making a sweeping statement here). I am finding many young people who want to be worship leaders (A worthy role - but we don’t need THAT many!) but I’m not finding many who want to be kids leaders. I also see camps for kids with learning difficulties closing because it is almost impossible to find volunteers - and my heart breaks. It is so sad that we find it so hard to find new young leaders to take these roles as seriously being a worship leader.

A speaker at the HTB leadership conference summed it up well today: "We have a generation that won't do hard work in obscurity - we want all the glory - the microphone"
The other comment I made on Facebook was “Thank goodness the football season is over!” Football has been and still is used in amazing ways - the roots of many football clubs are Christian, and I see friends working hard to improve the lives of kids using football (Check these guys out: Africa Soccer Developments).
Again - it is what football has become that I dislike, not the game itself. The football heroes our kids follow are often not the sort of people you would want as a hero. The day after I put my status on facebook, three separate football ‘heroes’ were in trouble for saying or doing something hurtful and unkind. I want our kids to have better heroes than that - people who can model a life full of character. 
In short - I want kindness and goodness to be fashionable, not fame and not being rich. I want our kids to be full of God’s Character - not the sort of ‘character’ portrayed in our fame hungry society, where notoriety is an acceptable form of ‘fame’.
Yesterday I heard the story of a 7 year old, whose friend died of cancer last year. On his 7th birthday, he said he didn’t want any presents, but wanted people to give money to the local hospice. He raised £80. Now that’s a hero - this is something that needs celebrating!
Let’s hear it for the unsung heroes, the ones who never get a mention but carry on serving regardless. Not just those in our churches, but those who serve our communities tirelessly. These guys are the REAL celebrities!

So - I'm sorry if you are one of the people I irritated on Facebook - I hope this goes a little way to explain my comments (Which have now been removed!!)