Amazing Stories About Some Amazing Young People

I’ve been thinking through what I’m going to say at the new “Neos” conference - a conference designed to "Equip all for family, youth + children's ministry". 

Aside from some sessions in the Additional Needs Alliance stream, I’ve been asked to do a 7 minute “Quick Insight” on additional needs.

What can I say in 7 minutes? 

What I want to do is to be positive!

Then I felt a blog post ‘coming on’. It wrote itself whilst I was in the bath…..! (I do some of my best thinking whilst in the bath!)

A Cold & Broken Hallelujah

I’ve thought long and hard about writing this blog post.

It’s a vulnerable one…. and I hate being vulnerable.

But it keeps screaming at me to be written, and this is my third attempt at writing it!

It stems from a seminar that Steve and myself did at Spring Harvest called “Coping With the Onset of Disability”. I wasn't totally sure about doing it, but as I've quoted in another post - God appeared to think it was a good thing!

Stolen Dignity

Dignity: “The state or quality of being worthy of honour or respect.”

We use the word dignity in many ways, and as a result its real meaning has been eroded a lot over the years. 

I'm often described as dignified - but by that most people mean I don't complain much (they don't know me very well!)

Why Would A Parent Choose Euthanasia?

Belgium is on it’s way to legalising euthanasia for children - it just needs the signature of the King.

So, Christians are all over the country are now mobilising to sign petitions that are directed at the King to stop this becoming law.

They are rightly concerned that this sets a precedent for other countries to follow.

But I wonder…….

Perfectionism vs Caring Community

We're in the 21st Century, and in 'The Church', families who have children with additional needs are still being asked to leave because the church can't cope with them. If they are not asked to leave, they are left to struggle.

That probably sounds a bit harsh, but sadly it is true.

Let's look at how the meeting of Church and the 21st century is affecting those with disabilities:

A couple of years ago churches didn't think anything of having sound 'dead spots' in their main meeting room - which was a huge help to those who can't cope with sensory overload. But now, with the dawn of more advanced sound systems these 'dead spots' are frowned upon in the pursuit of a concert style sound (That is often louder than actually needed). If any one with autism, tinnitus or other conditions that don't cope with surround sound ask for a dead spot area, they are frowned upon because "It might ruin the experience for others". 

The fact that those 'others' don't notice a problem is incidental, as is the possibility that a young person with an Autistic Spectrum Disorder/Aspergers has been caused to run crying into the toilet to escape the sound.

In an attempt to make things visually more 'exciting' we have moving back grounds on screens where the song words are, making it impossible for many to read the words.

In an attempt to make worship 'flow' we don't announce which song is coming next meaning some with specific disabilities can't find the next song in the large print song book until it's nearly finished….. that's if there is a large print song book!

Caring for others, including those with disabilities is getting more and more lost in a sea of  so called improvements that make us more like the world but make our communities and our meetings less accessible. The need for perfection comes ahead of the need of the people. 

And that's just the tip of the iceberg - for a person with a disability or additional need, whether they be an adult or child, Church is a difficult place to be and often a scary place.

It's because of this that I write about disability and the church. It's the reason that I shout and scream (and metaphorically stamp my feet) on Twitter and Facebook 

God put the idea that church should be accessible on my heart when I was 14 and volunteering on a camp for children who have disabilities…. a long time before I became disabled by some genetic quirk of muscles and neurology. I didn't find out that I had the conditions I have until I was 19 and training to be a nurse.

Many people think I campaign because I am disabled…. but I've only been using a wheelchair for a small number of years. I say this because some have levelled the accusation at me that I'm only campaigning to make life better for me. This is most definitely not true.

I campaign because I want everyone to be able to access the Gospel - no matter what form that access has to be. I am most passionate about children with disabilities and additional needs, but I also campaign for adults. It is pure co-incidence that I am now experiencing what I have been campaigning about.

I have found that if I give a talk or train people when sitting down - especially in a wheelchair, people don't take me as seriously as when I stand to speak….. why is that? Does my wheelchair take my brain away? This is why I plan pain medications to make sure I can stand - which surprised a few people at the last conference I spoke at. It wasn't the standing to speak that surprised them, but the fact that they later saw me in a wheelchair!

There are so many campaigns out there - lots of them wonderful and valid campaigns. They often get a great following. But I am left slightly bewildered by the fact that saving badgers gets more support than disability discrimination awareness!

In all the hard work and heart and soul I put into this campaigning, my 'head' tells me to give up, because it is obvious that majority of 'The Church' really couldn't give a stuff about it. But my heart tells me to keep going, because every so often it makes a small difference to one child or their family - a small difference in our eyes, but a huge difference in theirs.

What I do isn't about me - it's about kids and their families, it's about all those people who need to hear about the Love of Jesus but can't. It's about the care that Jesus tells us to have.

If Jesus was visiting some our churches, I don't think He would be in the main meeting….. I believe He would be in the toilet comforting that young person who couldn't cope with the noise.

Euthanasia for Children

Last December, history was made in Brussels.

Twin brothers opted to be euthanized together.

The two men, 45, from the Antwerp region were both born deaf and sought euthanasia after finding that they would also soon go blind.

It’s not just the fact that they were twins. The Telegraph said that “The case is unusual because neither of the men was terminally ill nor suffering physical pain.”

The paper then went on to report that  “Just days after the twins were killed by doctors, Belgium's ruling Socialists tabled a new legal amendment that will allow the euthanasia of children and Alzheimer's sufferers.” (You can read the full article here)

The rules in Brussels currently state that euthanasia can go ahead if “the person wishing to end their life is able to make their wishes clear and a doctor judges that they are suffering unbearable pain”.

After this news, there will be many Christians reaching for their pens to write to their MEPs. That’s good. But can I put something else to you.

If we as Christians are going to complain and attempt to make euthanasia illegal - especially when it comes to children with disabilities, we also need to look at helping to provide a viable alternative - or at least try to understand why people find this to be the only alternative to living with illness and pain.

These Issues Are Not Always Cut And Dried

Look at this from the point of view of a young person with disabilities. 

This is what they often see ahead of them:

• They see adults with disabilities having all financial help withdrawn because of cuts in disability allowances feeling that the only way out is suicide.
• They see older friends struggling with inadequate provision of care, where the carer due to come and help them doesn’t even turn up, or if they do turn up, barely having time to help get them up. 
• They see friends who have opted for supported living accommodation being abused or not adequately cared for.
• Some can’t see themselves having an amazing future, getting married or having kids of their own. 
• Some can’t see themselves getting jobs - especially since much of the support that used to be supplied to help them in the work place has been removed in this latest round of cuts.
• They read comments from high profile people making comments about “aborting babies with defects”.
• If they know they are going to need care into adulthood, the prospects can look bleak. They don’t see that for some it works out - because for the majority it doesn’t.

All of this can compound the feeling that they are a drain on society and have no right to be alive.

The Natural Next Step?

Can you see why they might take up the option of euthanasia? Surely it's the next logical step?

In health care, children are already allowed to make informed choices about their own care - and that is good. Why is it so unbelievable that the natural next step would be opting for euthanasia?

The Reality

Let’s look at it from another angle. 

For some babies who are born with such severe issues that they cannot live for many weeks without invasive care, and then in considerable pain, it is not unusual for only palliative care to be given. 

This decision is reached along side parents and isn’t the default position on care. When is it decided to treat them, the baby only usually lives a matter of weeks longer and often in a lot of discomfort. I have been a nurse caring for babies in both situations and both are agony for the parents.

If you want to take your campaigning to the extreme - you have to consider these situations too. What support can we give in both cases?

As a nurse I looked after a youngster from birth to death. Just over a year. Her issues were severe and her parents decided they couldn’t cope and put her up for adoption. She never got out of hospital. She was assigned foster parents, but fostering a child who is permanently in hospital never works.

Her life was all about keeping her alive at all costs, even though it was agony for her. Eventually - after much talk, it was decided to give only basic care (Nutrition and cuddles). Her first smile was in my arms as she passed peacefully away, free of needles and uncomfortable plastic oxygen head boxes. Was that wrong? If you think it was - please go and hold a child in obvious pain 24/7 because we insist on keeping them alive….just because we can. Can you, as a Christian provide the extra support needed if this course of action wasn't taken?

I am against euthanasia, but if if you are going to campaign on the right to life….. We need to consider these things too. 

Campaign by all means, but be careful. 

Consider all the options and remember - we also need to provide an alternative. Our churches need to be up to the task of helping practically and providing the much needed pastoral support too.

You probably Won't Read This Because It's About Disability.

I'm sorry for the tongue in cheek title - I did name it that as a joke, but as with many jokes, there is just a grain of truth in it.

I’ve come to the conclusion that when churches are thinking about disability and additional needs, we need a totally different way of thinking. Actually - some churches need to start to think about this as there’s no thinking to change!

How Does Your Church View Disability?

Is it part of the health and safety policy (How to evacuate the premises in the event of a fire) or part of the logistics policy of the church (Where do we put wheelchairs and is the loop system working)?

Is it viewed with some fear or maybe some belligerence (We can’t be expected to do everything when we don’t have any disabled people)?

Or, is it viewed with a different mindset? 

Is your church’s policy on disability placed firmly in the same place as caring for any other person in your church? Are they included in your pastoral thinking? Do you think of them when writing your evangelism policies? When you are training and helping people to find where their giftings are - do you include people with disabilities (including preaching, teaching and leading worship)?

We Need to Be Missional in Our Thinking. 

Rather than thinking “what do we do with the disabled people? Where do we put them, how do we make them safe and stop them complaining”,  we need to change our mindset so we see the person before the disability.

We need to stop treating them as a different people group. And to start seeing the need to facilitate faith and worship for all in our communities. We need to think differently for all those we are reaching out to.

Many of our churches are willing to think differently in the way they approach church and worship. We have seen an emergence of cafe church, messy church, seeker friendly churches etc, but sadly, there appears to be little appetite for making our services accessible at every level, for all.

Those who have disabilities are part of our communities. Yes, some may need to use a wheel chair, need large print or braille, need a signer - but first and foremost, they are people. If we start from seeing those with disabilities as people rather than a health and safety issue, and make them our friends, we will see much more easily how to facilitate them in our communities.

In caring for our church communities we think nothing of making meals for someone who has just had a baby, doing the ironing for some one who has had an operation, so why is caring for someone with a disability, and their family, such a big deal? Is it because it is a long term conscious decision rather than a short term emergency plan?

We Need to be a Welcoming Church 

The disability discrimination act requires us to be pre-emptive in our provision within services and church activities - on top of providing access to the building. I think this is a good thing - and a gospel thing to do. We want to be welcoming to any new person coming into our churches and that’s great! But how welcoming is it to come into a church and have to use the back door to get in? (Using the back door isn’t the issue - it’s the lack of welcome at the back door) To not be able to sing because you can’t see the words, not not be able to know what’s going on because the loop isn’t working….. The list goes on.

As a Christian who is disabled I have to put up with a lot. I rarely complain, but occasionally I will comment for the purpose of training for others. Sometimes I can see that things are done a certain way because there is a logistical problem, and for the greater majority it is the best way….. I am not the centre of the universe, it doesn’t have to be changed just for me. You will find most people with disabilities think the same way.

What I do comment on are thoughtless mistakes. They seem sensible to the person putting them in place, but they haven’t had cause to think it through from a disability point of view.

At the risk of embarrassing male readers, here’s one I and my disabled female friends often come up against:

We have to use the accessible toilet. When you look for the bin for sanitary items you find a note that says “The bin for sanitary items is in the main ladies toilets in the end cubicle”. Now, just stop and think that through a moment…. we have to use the accessible toilet because…… we can’t get into the main toilets!

I’ll close with that thought, but leave you with a challenge. How about looking around your church for issues just like this? How about sitting through a service looking at it from the perspective of different disabilities. Don’t just leave it at wheelchair users and those who are blind or deaf, think it through for those who are elderly and unwell, those who have learning difficulties, those who are autistic. Think about your children's work and your youth work too - there are many, many children and youth out there who have additional needs and disabilities. 

When it comes to those who have additional needs and disabilities  and are outside our church communities - it is a virtually unreached mission field. What are we going to do about it? How missional are we in our approach to disability?

How can your church be more welcoming to people (Adults and Children) who have disabilities and additional needs?

You can contact “Churches for All” for more advice. Just ask and I’ll put you in touch :o)

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?

"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.....!

The Story Behind the Forum

On 1^st 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…..to spread the word and make a bigger impact.

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.

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" 

Also:

• 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"

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. 

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?

God's Will.....?

I was really uncomfortable with something my daily devotional said today. It’s something I’ve questioned and studied for a long time - a constant irritant in my normally unquestioning faith.

The comment in this devotional was tackling quite a big issue that cannot really be tackled in a few paragraphs, so I may be judging it unfairly.

The writer was looking at verses in Genesis 50, including: "You intended to harm me, but God intended it for good so that others might be saved."

The writer goes on to talk about what God “intends” from problems and suffering: “From the beginning, God calculated for Joseph to experience all these things. Why? For the salvation of others.” The writer later goes on to say “Your problems have more purpose than you can imagine. Not because God merely used bad things, but because God intended them so that others might be brought to Jesus through your example.”

I struggle with this statement on many levels - both as a children’s worker who works with kids with disabilities, additional needs and difficult family backgrounds, but also with my own background too. Many children, young people and families are asking these questions, and I feel I need to have wrestled with it myself so I can help in the discussion. 

There are many thoughts on God’s will. Two of them are: “Permissive Will” (Allows things - even though it’s sin)  and “Directive Will” (God’s calling for your life - not as common as most would like.) There are quite a few other ones too. Look at http://bit.ly/dgOSES, as this gives some very helpful pointers on what people think about the will of God.

My starting point in looking at these questions is always the Bible, and the subject matter has to be myself - It’s difficult to talk to others about things like this unless I can show I’ve struggled with the question too. (Caveat time: You don’t have to have suffered to answer these questions, but showing you have given serious thought to it is helpful!)

I am alive on this planet because a church youth worker abused my birth mother - a horrible story in itself. Those who believe in the argument set out above would say I fit this verse to a T - out of an awful situation, came a children’s evangelist who may not have been here otherwise. Now, I believe God can redeem an awful situation, but can we really say that in reality God intended my birth mother to be abused? Personally, I don’t think so. But God has definitely redeemed the situation. As I talk to children who are survivors of abuse - the idea that God intended it is a harsh and dangerous one.

I also have a disability - but I can see God at work through it. Would I rather not be in constant pain? Well, yes! But the key issue here is not the pain, but my reaction to it and my relationship with God. Children with disabilities struggle with the idea that God intended their body to be one that doesn’t work properly - just as they struggle with the other side of the coin that they don’t have enough faith to be healed. We need to be very careful with our thoughts and theology here too!

In the last few years I have lost two female friends to suicide and another in the Australian bush fires, and in that time I have really struggled with people’s comments and prayers surrounding their deaths. In one prayer meeting I heard a person pray “God, we know you have ordained this in your perfect plan, and we don’t understand it….” Too right I don’t understand - but it was the prayer I didn’t understand. But many people believe this point of view, without actually thinking it all the way through to it’s conclusion. The grief was huge, but the idea that my loving heavenly Father may have “ordained this, made the grief so much greater - was it really God’s purpose to allow three families to be left without a wife and a mother…. And one father without his kids too? (My friend’s sons were also killed in the Australian fires). There are many grieving children out there, trying to piece together shattered lives after the loss of a loved one - how do we help them to understand these things?

It would be so easy to damage these precious kids with badly thought out and poorly explained theology. Where ever you stand in this debate - care needs to be taken.

My personal position lies smack bang in the middle of all the discussions on these things. I hope and I pray I can help children and young people who are facing suffering, plus their families, to go on believing in a loving God. I hope I can encouraging them to use what is happening to them to grow in their relationship with God. 

My faith and life journey, I believe, are more to do with my relationship with an amazing God than what God can do for me.