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. 

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 7^th 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!!)

So Tell Me - Why do I do this? Choosing to Hear God's Voice

On Friday I set off to Spring Harvest - everything appears to be falling into place; house sitters booked, packing getting there, preparation on going - even prayer is getting a look in too!

But as an incredibly shy introvert….. Why on earth do I do this?! I’ve already blogged about shy kids workers here, so I won’t say more on that. But knowing how encouraging many folk found that blog - I’m hoping the following honesty will also be helpful.

As someone who struggles with being around people - why on earth would I go to such a huge event…. And work with…. People! Please understand, I don’t hate people - I just struggle with chit chat until I have had a chance to build relationship with them.

It is easier when I assume my working persona - I know what I’m talking about (I hope!) and can talk about kids and disability quite happily. But when it comes to being ME, then that’s a different story. 

I’m not leading Whizz Kids this year - God was very clear in His call to pass that mantle on. But instead I am doing my equally favourite thing - making sure everyone can access this amazing event called ‘Spring Harvest’. It’s a role where I can remain virtually anonymous - an unknown person, facilitating those who struggle with what can be a difficult environment. I love seeing the joy on parent’s faces when they see their child settle into a programme, I love hearing young people with additional needs speak out testimonies of what God has done for them during the week. I also love facilitating the excellent team of volunteers who give up their time freely - making sure they are confident in assisting those with disabilities, whether obvious or hidden.

When I hear the testimonies of those who have been helped, with the phrase “Spring Harvest did this…..” Then I know why I do it. God has called me to it. 

And if I can do something as scary as this - with God’s help, then just think what you can do - with God’s help! 

I still battle with that deepening sense of dread and fear, I still wake up terrified about the task ahead - but in the background is that still small voice telling me that His perfect love drives out fear, that He will never leave me or ‘forsake’ me and that I can cast all my fears on Him. 

It’s my choice whether I listen to that voice or not - but today…. I choose to listen :o)

It Takes A Whole Church to Raise A Child

Yesterday I attended the Evangelical Alliance's council meeting, along with various others who have an interest or expertise in children's ministry. There were many excellent speakers too, who spoke with passion about their given subjects. Together, we were looking at the subject "It Takes A Whole Church to Raise A Child". (Do read Krish Kandiah's excellent article in Youthwork Magazine here, or get a copy of Christianity Magazine) If you are a twitterer, search for the hash tag #wholechurch where you should find lots of quotes from the speakers. Although, if my fellow attendees were like me, they were too busy listening and discussing to tweet, and not wanting to miss anything!

This is not a summary of the whole day - that would take a lot of blog entries! This is just about the part I had the privilege to play in the day.

As part of this, I was asked to prepare a 5 minute slot answering the question "Is Church Toxic to Our Children's Faith". Before any one complains that five minutes wasn't enough, I need to explain that this five minutes was to set the scene for further discussion - it wasn't a talk in it's own right as that wasn't what was needed. (It was also a good discipline for me to hone what I said and make every word count!)

As promised, this is a summary of what I said (Not word for word!):

Is church toxic to a child's faith? It was to people in my family, and that toxicity has gone on to affect them for many years. But I feel at this point, I should point that not every church is toxic to a child's faith.

Yes I do believe church can sometimes be toxic to children's faith!

Toxicity is often due to a combination of substances rather than just one, and in much the same way, I believe the problem of church being toxic to a child's faith is down to a combination of factors - but it's not always the same mix.

There will be a different recipe of toxins for each individual child - something that affects one child may not affect another and vice versa. But within that mix, that recipe, I believe there are a five constants - things that will affect the majority of children. 

They are:

• A lack of acceptance of and grace towards children in being fully part of the church, now, this minute. (It's not a case of waiting until children are 18)
• A lack of opportunities for children to serve
• A lack of a safe space for children to make mistakes and learn from them - as they serve, as they take their place in the church, whilst still being children (and we have to remember that they are still children and will be child like!)
• A lack of vision - for both the child and the children's work.... Or even the wrong vision (how we see it/how we wanted it to be for us), rather than allowing God to put His vision into the work we do.
• A lack of solid theology, taught in a child friendly way that takes into account the age and stage of the child;   We often either give the children a twee theology  (Tweeology) that only gives milk and no meat (wrongly assuming they can't manage meat), and  doesn't stand up to the rough and tumble of school life, or we give a thuggish theology that gives so many rules that a child just cannot live up to them. All of this, when actually, we should be giving meat, cut up into child sized pieces - the right size for their stage of the faith journey.

We also have children with additional needs to think about, where the above toxins can be amplified/made more toxic just because many question their ability to have faith - but that's a whole new topic on it's own. These children can also have faith.

But - there is an antidote to the toxicity! (because I can't help putting a positive point in!)

ACCEPTANCE , LOVE, GUIDANCE and  SIGNIFICANCE

In the discussion that followed - both in small groups and as a larger group it was said "that's the same for anyone walking into our churches". Yes - that's absolutely right! In this whole discussion, what we are talking about is 'community and family'. Not a group of children along side a group of adults, but integrated community.

Other comments and questions that came out of this section of the day we're numerous and helpful, including comments on how busy children are with their various activities and the difficulty of finding a night that churches can run clubs and activities.

It was also good to receive a question on the use of social media with children - something I may well blog on sometime on the future (including making it work from a safeguarding point of view). I do see a value in using social media in  the right context. Youngsters who often won't open up and discuss what is bothering them will often publish it to the world of Facebook. It's a good way to find out what interests them and what matters to them, and then use that 'social media relationship' to build community with them within the church. To be able to ask a young person how an activity they mentioned on Facebook went, can add value and significance to a relationship. 

We shouldn't be 'about' getting bottoms on seats on a Sunday morning, what we should be 'about' is building family and making our children feel valued and significant. That value shouldn't be based on how many times a child can make it to our activities - it should be based on the fact that our children are valued by and significant to God.

There was one thing that occurred to me whilst preparing for this (probably due to my dyslexia), and although I had it in my notes, I didn't have time to say it and 'unpack' it:

 It takes a whole church to raise a child, but could it be said - it takes a "whole" child to raise a church?

I'll probably blog some more on what some of the other contributors said at a later date, but I think my favourite quote of the day came from David Niblock (Abundant Life Church, Bradford): "Don't put a lid on your children"

Church - God's Brilliant Idea #2

Church is God's brilliant idea - but "The Church" is much more than just me or you. Church is made up of lots of people, and all play a vital part. This includes children - yes... Children!

Many times I hear the comment "The children are the church of tomorrow". In part - this is true, but I would argue that they are also a part of the church today, a part of the Church now - this very minute. They don't suddenly become part of the church when they turn 18.

A lot of what I want to say on this subject has already been eloquently written and discussed on Krish Kandiah's blog:
It takes a whole church… | krish kandiah  and A Lost Generation? | krish kandiah

Do read these - and the many comments that have been left in response - they make enlightening reading!

Tomorrow, I will be in London with many of my friends and colleagues in children's work, meeting with the Evangelical Alliance council to discuss the exodus of young people from the church. I will be debating the question "Is church toxic to our children's faith?"
I'll publish my comments on it in a separate blog later - where I will comment more on the subject "God's Brilliant Idea Actually includes children".

Meanwhile - do pray for the meeting tomorrow, for discussion on the day, and ongoing discussions afterwards. Please pray that the day will have a lasting impact on children's work and the way "The Church" views and accepts children in the future.

Church: God’s Brilliant Idea #1

Church is a brilliant idea - especially when it is working well. But is it working well for every one? Is it working well for children (A part of this brilliant idea from the day they are born)? Is it working well for those with disabilities? (Also part of this brilliant idea from the day they are born!) Is it working well for children with disabilities?

Over the next few days I’m going to give some thoughts and ideas about this - and I am going to endeavour to be positive and supportive whilst I do it.

Working with Spring Harvest, I’ve had access to the brilliant theme material for the 2012 event “Church Actually”. Many of my friends there are tweeting with the hash tag #GodsBrilliantIdea. That is what has given me the title of this series of blogs, and it is one that hopefully will give a positive and healthy view of kids and disability, rather than falling into the temptation to constantly berate and knock ‘The Church’ in what it does or does not do for children or those with disabilities.

Recently I put a comment and a question on twitter about the church caring for those with disabilities - and deliberately made it very negative. I wanted a response! My positive ones rarely get a response, so I thought negative might. I wanted comments to help me write these blogs, but sadly - still no comments!!

Let me introduce you to a group of people who call themselves “Churches for All”. I’m part of this group as an associate (Representing Children Worldwide).

It is a partnership of UK Christian disability organisations.

Their aim is to help churches create and sustain an environment where disabled people can participate fully in church life for the benefit of all. Disabled people are involved in the leadership of Churches for All and many of its partner and associate organisations.

Together, they strive to equip churches to reach towards their full potential by truly including disabled people.

'Churches for All' has a passion to see every one being a part of ‘God’s Brilliant Idea’. We advise, we look at how to raise awareness, we shout about inclusion until we are hoarse (Metaphorically speaking of course!) We even do conferences and forums looking at the theology of disability.

For many of us associated with this wonderful group of people it costs us. It costs us time, money, difficulty in traveling to meetings and a lot of emotional energy. Churches for All has no money either - it’s difficult to get funding for something like this! The partner organisations who are part of this group, put in money they can’t afford to keep it going.

So why do we do it? Because we believe that Church is God’s Brilliant idea, and that Church is so much poorer if it doesn’t have disabled people in it.

As a Children’s worker I feel Church is all the poorer for not having children in it too - and even poorer if they don’t have children with disabilities.

Problem or Purpose & Potential?

Ok - I’m a kid’s worker and I believe in evangelism amongst children. I have a passion to see ALL kids responding to God and growing in faith.

But when we think of evangelism and work with kids, where do those with disabilities and special needs fit in? Are they even part of our thinking when we write our evangelism plans and goals? It is sad that in many churches, children in general are not part of the official outreach programme, but children with special needs and disabilities? Well…….

When we think special Needs and disability, are we tempted to see the problems? Or can we see beyond potential difficulties and see firstly, a child and then the potential for faith and a life lived with God?

It is always a temptation to not see the child, but the diagnosis instead. We’re tempted to recruit people to a problem that needs sorting out rather than asking people to catch the vision for enabling this child to be everything they can be in Christ.

When I run training days, I find people want me to fix the “problem” with a quick fix or a bandage. It takes a long time to shift the focus from ‘problem’ to ‘purpose and potential’

Let’s be realistic here - usually, the only children with disabilities in our children’s work are those whose families are already part of the church family. Our mid week clubs have children with special needs who come from families on the edge of church. With both of these groups - we struggle, so how on earth can we cope with bringing more in? (Rhetorical question!)

As a teenager, and for many years after I worked on a summer camp for children with physical disabilities - I loved it! Many children came to know Jesus in a very real way, but…… Where could they go after camp? For a child with severe cerebral palsy, whose parents don’t want to go to church - how do we get them there, and how do we keep them there? In rare cases - we managed it, but as a rule, we didn’t. 

I’m still in touch with these ‘kids’ - many of whom are now adults. They don’t follow God, some are into “crystals” (One even has an advanced degree in the use of them!) My heart breaks!!! 

So who is reaching out to the disabled and vulnerable kids in our communities?

I’ve already been ‘realistic’ - now I’m going to be brutally honest…… Many of these children have short lives - I’ve been to far too many funerals! Happily, some of those have been for children still walking with God and a huge witness to their friends, but equally - there are so many more who are not in relationship with Christ. These kids have less time to hear the Gospel than others - the need is urgent!

We believe in the Gospel, we believe in spreading it, but do we believe in taking it to some of the most vulnerable kids in our communities - is “The Church” brave enough to step up to the challenge?