A Holiday For Families Who Have a Child With Mobility Difficulties Or Complex Needs

Latitude is a residential retreat, run by Children Worldwide.

It is a pilot event that we hope will grow into more specialist residential retreats in the future.

Latitude Means: freedom, space, liberty, free rein, room to manoeuvre, elbow room, wiggle room, freedom of action.

This is what we want to provide.

19th January 2013 Update

I will start by saying that this venture is still going ahead! But we need to explain our journey.

We had almost filled this camp, but with a combination of deteriorating health, the weather, and one of the children passing away our numbers dropped.

We still had one firm booking and the possibility of a second.

We had to seek God in what we should do. He answered in various ways, including a gift that would almost cover the short fall. Along with our trustees, we have decided to go ahead - it's worth it!

A small group of our members will be researching the possibility of a another more specialist holiday retreat in 2014 at a more central location - We will carry more info on this as and when when we have definite plans in place. We also hope to carry on with this one at Dalesdown too, and will be booking another date for next year.

But for now - here is what we are doing with the event in February.

We now have two families definitely booked in. We would love more.
We have appropriate staff and we have funding.

We have redefined who can come: Any family who have a child with a physical disability who would benefit from this style of holiday/retreat. This could be complex needs, it could be any form of mobility difficulty.

The idea is to pamper, to give parents a chance to talk to other parents, to give the children and their siblings a chance to meet with others. To rest, to have fun - and just 'be'.

Our payment policy is now either "Pay what you can afford" or, asking churches to sponsor families by paying what they can afford. If this is just for food - then fine..... we just want families to come!

What Can You Do?

If you are the parent of a child who fits these criteria - please book, for your whole family. Even if you can't afford it - still book, we have funding and we can find a way around the money! If a weekend is too much and you live locally - just book in for a day!
If your child's health is up and down and it's difficult to commit - sign up, explain and then decide on the day - we don't mind (If we need to do an extra trip to the shops for food - it's not a problem!)

Email and ask questions if you need to (Address on the poster above)

This weekend is for you - tell us how you need us to help you.

If you are a kids/youth leader or a church leader - refer families to us.

If you don't have some one who is able to come, but you are in touch with families who fit these criteria, come up one day to see what we're doing and why and find out what you can do as a leader. Just let us know you are coming and when.

This is a huge vision - and a long held one.

Kay Morgan-Gurr
General Director, Children Worldwide

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)

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.

Horror Statements

A UKIP candidate thinks kids with additional needs should be aborted (http://bbc.in/ViUfBl), and a mensa member  referred to those with an IQ lower than 60 as ‘carrots’ on the BBC (http://bit.ly/VUmpsY).

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?

Yes?

Well that’s the whole point of the forum we are holding on Feb 1^st 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.

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!

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 http://bit.ly/12oLm6B 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.