Latitude Family Holiday

Where do I start!

Latitude was a long held dream of mine - to pamper families who have children with complex medical/additional needs, because in general, the world and the church don’t do this very well.

The journey has been long and difficult to get there, but we did - and it was great!

Having been fully booked within weeks of our first publicity going out, suddenly our numbers dropped. This was due to many reasons - the most common being the child with the additional needs being too ill to come. We also had team dropping out (All for good reasons) and then our cook found out she had to have a minor op that weekend.

We took advice, asked people to pray, got more information out there through as many friends and organisations as we could….. And we waited.

I’m not one given to ‘words and pictures’ but many were given to me over this time of uncertainty. All tested, and all correct in their interpretation. All pointed to going ahead, even if we only had one family.

By a week before - we had two wonderful families, and I can honestly say they were exactly the right two families to test drive this new venture! (I know they will read this, so I will say again - “you were the right families - and we loved having you there!”)

One family had been booked right from the beginning, the other came in at the last minute, but because of the way we had everything planned, we could adapt to who ever came through the doors on the Friday evening.

By the Sunday before we started, we had been blessed by an amazing cook, and another amazing lady who ably assisted her in the kitchen

We were blessed by other organisations - Ben Pugh from Impeyan (www.impeyan.net) helped us a lot. When we thought we couldn’t afford them to come, he rang and worked through with us what we needed. He adapted his ‘show’ to the needs of the children - and it was fantastic! (Those of you who follow me on twitter or face book will have seen some of the photos!) He spent much longer with us than he could have, treated the children with care a respect and understanding. He spoilt the parents and leaders too with an amazing show. I can’t recommend them highly enough!

Equine partners also brought one of their horses up - Smoke was a lovely gentle horse who loved to pose for the camera (Yes - really!) The children had the option to ride or not, one said yes and one said no, but one of the mums took the opportunity to have a go too.

After the horse riding came the magnificent cream tea! I think we’re all still full from that!

On Sunday morning we had a walk/roll along the seafront - ‘bracing’ but fun! In the afternoon the adults had their own ‘service’ with the sermon given by Jeff Lucas via DVD (A spring Harvest Celebration talk), whilst the children had their own meeting in the sensory room.

Steve Hiscox, a member of Children Worldwide who is an osteopath also came - with the purpose of pampering families and children with his gifts.

Made by Martyn

Mobile Being Made by Donna 

The rest of the weekend had various things for family and children. We kitted out one of the bedrooms as a sensory room, had posh craft for the mums and sensory craft for the children, plasticine for all the grownups (quite a hit as you will see from the pictures). I even got to teach some crochet and knitting skills….. I love knitting and crocheting! We also had some ‘blokey’ things we could do if needed (We listened to local air traffic via a scanner and watched the space lab pass overhead!)

We ate lots, drank much tea and coffee, talked over the biggest range of things I have ever heard discussed and I hope encouraged one another in the process.

The team were fantastic - it was a team that had never worked together before, and we had three team who had never been to Dalesdown before and either only knew one other member of the team or no one at all. I have never known a team gel so quickly! We worked well together and have left this weekend with the gift of new friends - not only from the team, but the families too.

Anne Roche - another member of Children Worldwide, led family devotions on the first morning. She played the Steven Curtis Chapman song “Fingerprints of God” as part of that. As we looked at the children and their families (And the team of course) you could see those fingerprints very clearly! I feel that set the scene for the rest of the weekend - you could see Gods fingerprints over the whole of this event. It was blessed.

Are we going to do it again? Well…… yes! We need to confirm the date, but we think it will be just a couple of weeks later than this year’s - still only a weekend, but who knows, we may end up doing more than one weekend.

Additional Needs Alliance

Last weekend we had our first “Additional Needs Alliance” Forum.

It was a great success! Just over 50 people of like mind together in one room. 

The speakers were: Mark Arnold from Urban Saints. Me (Kay Morgan-Gurr) from Children Worldwide, and Paul Nash of the Paediatric Chaplaincy Network. There were others who came to help facilitate different areas of discussion.

The forum fed into the Children and Family Ministry conference (Hand in Hand), with the Friday night plenary being about “A Vision for Inclusivity” and an additional needs work seminar stream running throughout the weekend. This was also a great success.

What is the 'Additional Needs Alliance'?

The Alliance isn’t another organisation out to ‘get at’ churches. It’s primary aim isn’t campaigning but rather getting alongside people and churches to raise awareness in the area of working with children who have additional needs and disabilities. Ok, so some might see what we do as campaigning…..but that's just a side effect of our passion!

What we are aiming to do is start a conversation about how we care for children and families who are affected by the huge breadth of additional needs and disabilities out there. To raise a vision beyond just ‘catering’ for these children to creating a place where they and their families feel they belong and are wanted. We want churches to say yes to families who are so used to hearing ‘no’ when they ask if a church can cope with their child’s needs.

One of the things we have looked at is the vision for the spiritual walk of these children, their faith journey with God. We know they can have relationship with God - it may challenge how we view and understand faith, but we know that God understands and the power of the Holy Spirit works beyond our understanding. We believe the faith journey of these children should be a fundamental part of our vision.

1 in 5 children in this country having some form of additional need or disability, and it is obvious this number is not reflected in our churches.

There are small pockets of excellent work out there, usually stemming from people already in our church communities having children with additional needs. It’s a great place to start - but we can also see a much bigger missional picture.

Many people, when looking at this area often only see those children with ADHD, Autistic Spectrum disorders and dyspraxia, and although these are important, those with other conditions and disabilities are often forgotten. We want to raise awareness in ALL areas of additional needs and disabilities and make sure our churches are open and accessible. A safe place where they can belong.

What can you do?

You can join the conversation and spread it - Gossip this stuff around - Kids with additional needs and disabilities matter!

We have a facebook group  a twitter account (@A_N_All) and an email address (On the flier to stop spammers getting hold of it!)

We are planning more forums - join the facebook group or contact us for more dates.

Link to a copy of the flier below here

*This is a Children Matter! initiative. Currently run by an Urban Saints and Children Worldwide partnership

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.