‘The State Of The Nation – Additional Needs & Disability In The UK’

In a few weeks time for many, a new academic year will start; in some parts of the country, it starts this week.  The start of the new academic year is often the time that church children’s and youth clubs start up again, although of course some have continued during the summer, or have run holiday clubs or camps.  Sunday mornings become busier again as families return from holidays; the buzz of activity in weekly children’s and youth work across the UK builds up again… including those working with children or young people with additional needs or disabilities.

But what does the overall landscape look like?  What is the background narrative in the UK today to working with children, young people and families where there are additional needs or disabilities?  What do we see if we lift our heads up from the great work which many are doing individually and locally for a moment, and take a long hard look at the big picture?

Well, here are three observations, drawn from published data (sources provided) that shed some interesting light on the state of the nation in the UK regarding children, young people and families where there are additional needs or disabilities, and how the church can and must respond:

1.  This is a bigger ministry area than we might think

3% of children/young people have a Statement of Special Educational Needs (source: UK Gov.)[1]  The term ‘Special Educational Needs’ (SEN) has a legal definition: “Children who have learning difficulties or disabilities that make it harder for them to learn or access education than most children of the same age.”  There are roughly 13 million under 18’s in the UK, so 3% is 390,000… a big number, and of course each individual is important, but that is only part of a much bigger picture…

copy-of-eecu-kids-colour-large 

20% of the 13 million children and young people in the UK have additional needs of some kind (source: UK Gov.)[2]  That’s 2.6 million children and young people across the country, a huge number!  Do we see one in five of the children or young people that we engage with in church, or care for in other settings, having additional needs of some kind?  Maybe in some settings we do, but in many we don’t, and there could be some important reasons for that…

2.  Additional needs ministry isn’t just for Sunday mornings

Up to 90% of families with children that have additional needs are un-churched (source: Baptist Press)[3]  Many of these families are outside of our immediate church congregation, we seldom see them at church events, but they live all around us in the local community, and they are in need of support and help.  It can be hard for them to find us, we need to make the effort to reach out to them, to welcome them, and to meet their needs.  And their needs will be many and various…

Siblings and parents often feel excluded from a wide range of social activities, including church (source: Mumsnet)[4]  Why is this? Because often these activities don’t cater for children or young people with additional needs, or require parents to continue caring for their child at the activity rather than being able to enjoy it for themselves.  Talking to parents about how they and their family can be supported at church events is a vital first step to enabling them to come.  And it is important to pick up on siblings here too… often junior carers, regularly missing out on typical family activities, generally overlooked by the church.

53% of families claim that having a disabled child causes some/major relationship difficulties or breakups (source: About Families)[5]  It is hard raising a child with additional needs or disability, and it has an impact on families…  It grieves me as a father of a child with additional needs myself to see that it is often the father who can’t cope and goes, leaving the mother with the additional challenge of being a single parent too.  How can the church reach out to families to either a) support them better to help them stay together, or where this is no longer possible b) support the remaining parent to help them cope?  Perhaps working with families to see where the key stress points are during the week, and looking to support them effectively at those times, might be a good place to start.  Offering marriage support such as that offered by Care for the Family might also be helpful.

3.  There are other things that the church can do

Poor communities are twice as likely to include families with children with additional needs (source: LKMCo/Joseph Rowntree Foundation.)[6]  This will be relevant to most churches, as every church will be near to more deprived areas.  The reasons for this statistic are many and various, but include that poorer communities will commonly have less access to the best specialist support and medical advice, and that poor nutrition can play a part in exacerbating some conditions.  How can churches step up to help?  Offering food banks, debt counselling such as CAP (Christians Against Poverty) and other services targeted at the poorest families in the community would be a good start.

 60% of children with additional needs are bullied (source: Ability Path)[7]  When we think of bullying, and the places it happens, we commonly think of school, the journey to and from school, in the local streets, and increasingly online.  But do we also consider the bullying that happens in our churches?  The ‘tuts’, the harsh stares, the gossiping, the unasked for ‘child rearing advice’, all can be just as bullying to a family of a child with additional needs?  A zero tolerance of such bullying behaviour, led from the top by the church leaders, is essential in bringing about a culture change so that everyone is welcome, included and cared for.

So, in conclusion, the state of the nation for children, young people and families where there are additional needs is often challenging and difficult, and this blog deliberately hasn’t touched on recent Government policy and its impact, but the church can, and must, engage and make a difference…   As Nick Knowles always says at the end of ‘DIY SOS’; “Do you know someone you can help?”

Mark
16th August 2017

Image rights: Committee for Economic Development (Header), Hampshire Childcare and Family Information

[1] ‘House of Commons Education and Skills Committee: Special Educational Needs – Third Report’ (2006) https://publications.parliament.uk/pa/cm200506/cmselect/cmeduski/478/478i.pdf [accessed 2nd August 2017]

[2] ‘Reforms for children with SEN and disabilities come into effect’ (2014) http://www.gov.uk/government/news/reforms-for-children-with-sen-and-disabilities-come-into-effect [accessed 17th November 2016]

[3]Church’s outreach to families with special needs children: ‘a major need’ (2003) http://www.bpnews.net/16565 [accessed 2nd August 2017]

[4] ‘Mumsnet parents: negative attitudes are holding back our disabled children’ (2014) http://www.scope.org.uk/About-Us/Media/Press-releases/February-2014/Mumsnet-parents-negative-attitudes-are-holding-bac [accessed 17th November 2016]

[5] ‘Together and apart: supporting families through change’ (2011)
http://www.capability-scotland.org.uk/media/101061/about_families_report_2_change.pdf [accessed 1st August 2017]

[6] ‘Children from poor families ‘twice as likely’ to have special needs’ (2016) www.tes.com/news/school-news/breaking-news/children-poor-families-twice-likely-have-special-needs [accessed 1st August 2017]

[7] ‘Walk A Mile In Their Shoes – Bullying and the Child with Special Needs’ (2013) http://abilitypath.org/wp-content/uploads/2015/11/walk-a-mile-in-their-shoes.pdf [accessed 1st August 2017]

 

‘Prayer – Essential In Inclusive Children’s & Youth Work’

Prayer is an essential element in inclusive children’s and youth work…  seems an obvious thing to say doesn’t it?  Yet it still surprises me how many times we overlook including God in what we are doing…

Take the ‘phone call I received once as an example of this…  In the role that I have, I tend to be the person that children’s and youth leaders get put through to in our office if they have any questions or queries about working with children with additional needs.  One call got put through to me that I will never forget!

“I’ve got this lad in my group, he’s got ADHD and is a complete nightmare, what can I do to exclude him?”  Quite an opening line, but that’s what I got from the youth worker in question…  I took a deep breath, and suggested that he told me what had happened.  There was quite a story, but many opportunities had been missed to help and support the lad in question…  You can read the full story of what happened and what we did to put things back on-track in my blog on ‘Lessons From Exclusion’  https://theadditionalneedsblogfather.wordpress.com/2017/04/27/lessons-from-exclusion/

There is much more to this story though, as when we had successfully got things back on-track again, I asked the youth leader a question that I had a pretty good idea I already knew the answer to…  “What did you pray about at the beginning of your session?”  I asked this as a way of challenging the youth leader to think about how prepared he and his team had been spiritually for the session they were just about to run, and I got the answer I had half-expected…

Oh we didn’t have time to pray!  We’d been at work all day, rushed home for something to eat, then down to the hall to get everything set up.  Then the parents arrived with the children and we were greeting them and sorting everything out.  We simply didn’t have time for anything else…

It’s easy to see how that happened isn’t it?  Busy people, lots to do, very little time available… I’m sure many of us have been there, just about getting everything done in time, constantly glancing at our watches…  Servant hearts willing to serve, but not checking in with God to help them understand how to serve…  And then it all unravels…

Praying doesn’t guarantee a smooth running children’s or youth session…  but it might make the difference between us being able to cope or not.  It might make the difference between us feeling that this is all down to us, or recognising that God is bigger than all the difficulties we might encounter…  It is so important to pray as we prepare to do God’s work with the children and young people, whether they have additional needs or not…  Why would we not include him?

Pray, even if it means the room isn’t laid out how we would like when the children arrive, even if it means the drinks aren’t ready, even if it means we have to open the doors a couple of minutes later! Pray…

  • Pray that God would be with us all, preparing us to serve him and the children, and helping us to be Jesus to them.
  • Pray that he would have prepared the children and young people for the session, opening their hearts and minds to what we might share together.
  • Pray that he would speak through us as we share his word with them, through all we say and do.
  • Pray that if there is a special word that we need to give to a particular child, that God will use us in that way.
  • Pray that the needs of all the children will be met.
  • Pray that God’s peace and protection will cover the building and all within it.

Pray about any or all of these things, and more, but pray…  God hears our prayers, God responds to our prayers, God recognises that in praying we are saying to him “this isn’t all about me and what I can do, it’s all about you and what you can do through me”

Prayer is powerful, prayer works, and prayer connects us to God in ways we can’t even understand… but he does.  Whatever else we do as we prepare to lead children’s and youth work next time, let’s all make sure we have time to pray!

Blessings,

Mark
27th July 2017

Image rights:  Thinkstock

‘Fidgets, Fiddles, Focus and Fun!’

There has been an enormous amount of fuss in the last few months about fidget (or fiddle) toys…  largely focussed around finger spinners and fidget cubes…  Much of the commentary around this has been generated by the debate as to whether schools are right or wrong to ban them, as many (but not all) have…  Are they a useful aid to focus for children?  Are they a distraction for them and others?  There has been much discussion about this, some very good and informed input provided (including from my good friend Miriam Gwynne, well worth reading her thoughts on this), as well as some utter guff from folk just jumping on the bandwagon without understanding this at all…

fidget cube and finger spinner

This blog doesn’t attempt to re-open that debate, but to move it on to look at how a wide range of fidget or fiddle toys can be a really effective part of the resource toolkit for children’s and youth workers in the church context, and what things to include in your fiddles box.

Firstly, it is important to think a little about how fiddle/fidget toys can help.  We all occasionally use other things to help us to focus…  some of us might listen to some music as we read or write, others might doodle as we chat on the ‘phone, some of us might even spin that pen around in our fingers a bit like a miniature cheerleaders baton, or repeatedly click the pen on and off, or chew the top of it…  In our case, these activities can help us to focus, relax, get rid of some nervous energy, or simply give us something to do with our hands…

It can be the same with children and young people with fiddle/fidget toys…  by using a variety of things, children and young people, including those with additional needs, can be helped in just the same way as us adults, especially during a talk time.  Each child will, like many of us, have a favourite item that they will choose from the fiddles box…  something that meets their needs and helps them concentrate.  Having a selection of different items in your fiddles box will ensure that you’ve got something for everyone…  and if more than one child wants the same thing, most items are fairly inexpensive so adding more to the box shouldn’t be difficult.  The variety of things to include can be up to each children’s or youth worker and the children/young people they work with, but here are a few suggestions (see the photo’s too):

  • Something you can twist or bend…  A string of wooden blocks that can be twisted into shapes, or pipe-cleaners which can be bent or twisted into spirals, can be excellent for this.
  • Something you can stretch…  Fitness rubber bands, or stretchy people, both work well.
  • Something you can squish/squeeze…  Play-Doh is a favourite for this, and is the go-to item for my son James, but a ball that you can squeeze is also good.
  • Something that lights up…  Balls or other items that light up if you squeeze them.
  • Something that has a little bit of weight…  Such as a bean bag or something similarly heavy.
  • Something you can stroke…  A small soft toy or finger puppet for example, or a piece of velvet.
  • Something you can click, manipulate etc…  This is where the fidget cube, finger spinner, or even a slinky can work well.

Fiddles box

Lots of other ideas are out there…  what would the children in your group find helpful?

What you have in your fiddles box might also depend on where you are going to use it…  Mine also has some velcro, which is very satisfying to tear apart and re-join, but could be a little too disruptive for a quieter setting!

It is important that everyone has the opportunity to choose something from the fiddles box during the session as they need it…  It shouldn’t only be available to some children or this risks building resentment.  Initially, the excitement of it all might make it a short-term distraction, but things will settle down quite quickly and then having access to the fiddles box will be normalised.  Don’t forget to add extra of any items that are popular!

A great suggestion is to bring the fiddles box along to your next children’s or youth work team meeting.  Let your team choose something to fiddle with while you all talk (instead of their usual pen!)  It will soon be evident that this helps concentration and focus, rather than hindering it…  and it’s a bit of harmless fun at the same time!

More tips on how to engage effectively with all children and young people, including those with additional needs, can be found here: www.urbansaints.org/additionalneeds

I hope you find these tips helpful, and look forward to hearing your stories as you create your own fiddles/fidget box and use it effectively in your group!

Now, where did I put my finger spinner…

Mark
22nd June 2017

Image rights: Urban Saints & Mark Arnold

‘Inclusion Champions – Transforming The Church’

There are many ways that those involved in children’s and youth work can make a big difference for children and young people with additional needs or disabilities, and their families.  I often get asked what one change can make the most difference, can have the greatest impact, can enable lasting transformation.  The answer I always give is this… have someone that owns this, that champions it, that challenges the rest of the church to step up and make a difference.

It’s not just about inclusion; so often churches feel that if a child or young person with additional needs or disability is able to access the group then the inclusion box can be ticked.  It is so much more than this, as to settle for inclusion could just mean settling for offering a child-minding service, and there is much, much more that the church can, and should do.  Having an ‘Inclusion Champion’ can help churches to develop three important steps for their work with all children and young people, including those with additional needs or disability:

Three stepsThree important steps

  • Inclusion: This is still important, and needs to be a foundation stone for everything else. Looking to ensure that everything the church offers is accessible to all, inclusive of all, accommodating the needs of all.  An ‘Inclusion Champion’ can be vital here to ensure that the programme the church provides is assessed against the needs of everyone.  What parts of the programme might be difficult for some to access?  Are there certain activities that are inaccessible to some?  What simple changes and adaptations can be made to change this so that everyone is welcome, everyone can take part, everyone’s needs are considered and acted upon.
  • Belonging: Inclusion is just the first, important, step.  If we stop there, we settle for so much less than is possible, so much less than we should.  Within children’s and youth work we risk just settling for child-minding.  But do those children and young people really feel that they belong to the church; that it is their church?  Are they missed, for all the right reasons, when they can’t come?  Is what they bring to the group valued and cherished, bringing a flavour to the group that is distinctive and vibrant?  An ‘Inclusion Champion’ can work with the leaders of the children’s and youth work, the children and young people themselves, as well as parents and carers, to create a place of belonging for all, where everyone is valued.
  • Faith development: Even belonging isn’t the end of the journey; while it’s great to reach a place where all children and young people feel fully valued within their church, there is even more that can be done.  Every child or young person, whether they have additional needs or not, can develop and grow in their faith and should be helped to do so within the work of the church.  An ‘Inclusion Champion’ can enable children’s and youth workers to consider how to help everyone to be discipled; to create an environment for all to be reached by, and to respond to, the Gospel message of grace, love and hope.

Where an ‘Inclusion Champion’ is in place, the impact across the work of the church is transforming.  Time and time again I come across stories from churches that have been involved in some of the training I run, which highlights having an ‘Inclusion Champion’ or ‘Inclusion Leader’ as the most important step, and are now seeing amazing results from having someone in this role.

An ‘Inclusion Champion’s’ story:

Claire from Hitchin Christian Centre sums up their recent experience here:

One of the ‘Top Tips’ which is shared in the Urban Saints ‘All Inclusive?’ seminar (www.urbansaints.org/allinclusive) is for every church to appoint a SENCO/Inclusion Leader.  I was challenged by this fantastic suggestion and in September 2016 took on the voluntary role of Inclusion Leader at Hitchin Christian Centre.  This is such an exciting opportunity and so far, together with the Children’s Pastor, we have made significant changes and made a great start in helping our children’s-work groups to be more inclusive and accommodating for children and young people with additional needs.  In my role as Inclusion Leader I also led a seminar at a training event for children and young people on the subject of including children with additional needs in a church setting.”

A mum’s story:

Beckie is mum to a child with additional needs who attends St. Paul’s Church in St. Albans; here she speaks about the difference having an ‘Inclusion Champion’ has made for her and her family:

“I wanted to write to say how important the SEN inclusion at St Paul’s has been for us as a family.  I understand that the inclusion that there is now at St Paul’s stemmed from a course that members/staff from the church attended; the ‘All Inclusive?’ course run by Urban Saints.  I understand that this encouraged the creation of an ‘Inclusion Officer’ role at church and a whole host of other practical measures that support inclusion of SEN families.

 Life with a child with SEN can be very isolating and there are few places in which, at times, it is possible to feel comfortable and welcomed.  Some of the things that were implemented at St Paul’s include Makaton signing in family services; a space for those with additional needs to be during the service; a one-to-one helper provided for those children that need it; Makaton training for the children’s leaders; visual time lines for the service timetable etc.

 These steps have helped us as a family to feel welcomed and included in the church.  The fact that the church has implemented these steps portrays a strong message that those with SEN are welcome, and that means they are welcomed with all the potential behavioural and emotional issues that that may bring.  It also has helped our other daughter who does not have special needs.  Her seeing the Makaton in the services has normalised the use of the signs for her and we think helps her not to feel like we are a different family.  If we had not felt so comfortable and welcomed it would have been very difficult for us, practically and emotionally, to continue attending.”

These stories lay down a challenge to churches across the country; if they want to be serious about inclusion, belonging and faith formation for all children and young people then having an ‘Inclusion Champion’ in place is vital…  Not waiting for the need to arise (the reality is that the need is already there anyway) but catching the vision, seeing the benefits this can bring, and going for it!

So come on church…  let’s see a wave of ‘Inclusion Champions’ sweep across the churches of the country, and see all the children and young people of this land included, belonging, and discipled.

Mark
9th June 2017

Image rights: Unknown

‘One-to-One Heroes’

Where inclusion in church is done well, particularly where it is done well within children’s and youth work, there are often unsung heroes working in the background to care for and support those with additional needs and disabilities.

These folk get alongside children and young people who need additional support and provide them with the help, encouragement, confidence and care they need to cope, thrive and benefit from their time at church.  One-to-one help can be transforming for a child or young person, reducing the uncertainty and fear of the unknown… what is happening now, what is expected of me, what is happening next.  Having a caring friend alongside to help and to explain what is happening, to answer questions and to assist with the range of needs that a child or young person might have, revolutionises church for them.

When I’m running training for churches and I start to talk about one-to-one help, I know that usually I’m going to be met with the same comments, so I pre-empt them…  I ask for a show of hands for anyone whose children’s or youth work has more volunteers than they need… that they have to turn volunteers away as they have so many already!  This always gets a laugh, accompanied by no hands going up at all.   I then ask how many of them struggle to get enough help, who scrape by with the small number of volunteers that they have… A forest of hands is then visible…

So, when I then start talking about one-to-one help, the scene has already been set.  I introduce the idea of one-to-one help but with one important clarification…  this isn’t necessarily about getting a bunch more children’s or youth workers along to help.

When thinking about one-to-one help, we sometimes have to fish in a different pond…  While some people that make great one-to-one helpers can also be great children’s/youth workers, the main responsibility of a one-to-one helper isn’t to run children’s work but to get alongside one child/young person and support them.

You don’t necessarily need someone who can lead songs, organise games, tell dramatic stories or plan a teaching programme.  What is needed is someone with a heart to help a particular child or young person, someone with the pastoral skills to see when they are struggling and to help them, someone who can interpret what is happening and what is expected in a way that the child or young person can understand.  They can be observant for when a child or young person might be starting to struggle, and have strategies in place to help when this happens, preventing it developing into a meltdown.  They can be a great connection for parents/carers, debriefing at the end of the session about how the child/young person has got on, what they have enjoyed, what they found harder.

They can be people like the three one-to-one helpers that care for James…  On a once-a-month rota they sit with him, help him to do the things that the others are doing, explain things to him, but most of all they show him Jesus’ love through the ways that they love him.  He’s had Alison, Ian and Rich to help him for years, knows each of them really well, and is happy to spend time with them.  And they love seeing him, look forward to their time with him, and it is a mutually enjoyable and beneficial time that they spend together.

I sometimes get asked how James copes with having a different helper each week, as routine is really important to him.  He has known each of his helpers for many years, so manages the changes well, and having a pool of one-to-one helpers available means that when holidays or other time conflicts arise, there is the opportunity to swap people around to ensure James still has support.

One-to-one helpers can come from lots of different ‘ponds’…  the grandparent generation can be great at this, so can other young people who can be ‘buddies’ for those that need them.  Everyone benefits, and it is always great to see these relationships grow.  Churches that provide this help generally reap the rewards of seeing the children/young people involved thriving, seeing parents/carers able to be spiritually fed in church themselves (vitally important, see my previous blog post: ‘Additional Needs Families And A Truly Supportive Church) and seeing the work of the church become more inclusive.

So let’s go fishing, let’s fish in a different pond for the one-to-one helpers that can make a transforming impact on the way children and young people with additional needs and disabilities can engage with, and be an active part of, a church where they truly belong.  And where these heroes lovingly care for children and young people already, let’s recognise the work they do and the impact it makes…

To all the Alison’s, Ian’s and Rich’s out there… thank you!!

Mark
2nd June 2017

Image rights: ‘All In’ holiday

‘Additional Needs Families And A Truly Supportive Church’

Often the starting point for a church looking to be more inclusive of children and young people with additional needs is to seek out some training to help them to do this better during their Sunday morning sessions, or during a mid-week club night.  To be able to work more effectively with all children and young people during these times, including those with additional needs.

But that is really just scratching at the surface of what the church could, and should, be offering.  In many ways, it’s a ‘church focused’ approach… “We have some children/young people that we struggle to support, we need some solutions to help us to do this better”.  It’s putting the needs of the church at the heart of the matter, rather than the needs of the children/young people themselves and the families that they come from.  And these two sets of needs may be very very different indeed!

A story from last summer really helps to illustrate this…  It was the beginning of the school summer holidays and a family that includes two children with additional needs was facing the six-week school break with no respite available for them at all.  Six weeks of constant 24/7 care for their two children, and they were finding the prospect pretty daunting!  They had tried all avenues to get some respite or support but nothing was available, or there was no budget that would pay for it.

So… they went to their local church and asked if there was any way that they could help…  Did they ask if their children could be included in Sunday School for an hour on Sunday mornings?  Or if they could bring them to the mid-week kids club?  Both of these settings are incredibly important, and to make them accessible, inclusive, and places of belonging for everyone should be a priority for every church (see www.urbansaints.org/allinclusive for ideas), but that isn’t all that this family needed…  They needed help!  Real honest-to-goodness practical help!

Did the church turn them away?  Did the church say they didn’t have enough resources, volunteers or training?  Did the church say this is really a Social Services matter?  No… they immediately saw the need, recognised that here was a family in crisis, and rolled up their sleeves ready to serve.

They took the children out on trips, they made meals for the family, some of the women took mum for a pampering session while the guys took dad out for a round of golf.  They did loads of practical things to support and serve this family.  They loved them as Jesus loves them, and by showing their love in this way it made an enormously positive impact on this family…  They were literally loved through the six-weeks of the summer holiday, and support has remained in place since.

If a church has children and young people in it, it is going to have children and young people with additional needs, and their families, of all shapes and sizes.  Serving those families both in church and at home is a vital ministry to families who regularly struggle.  Helping families like the church in the story above did makes the headlines, but there are many other ways in which the families that we serve can be helped on a week-by-week basis through church.  Here are just a few suggestions:

  1. Don’t make a parent of a child with additional needs be the one that cares for their child in Sunday School. Parents need to be spiritually refreshed and fed too, and they won’t get that providing childcare.  Look to provide one-to-one support to give these parents the opportunity to be discipled.
  2. Offer childminding to parents so that they can come along to a Bible study, growth group, evening service etc. together. The opportunity to just come to something as a couple is rare, so help them with this.  Over half of couples with a child with a disability say that it causes major relationship difficulties or breakups…  it’s a stressful life, let’s help these couples get some quality time together.
  3. Think about holding a monthly drop in style event for parents with children with additional needs where they can come, share coffee and cake, make friendships, share stories. Parenting a child with additional needs can be really lonely and isolating, the church can help here.  Contact ‘Take 5 and Chat’ for ideas… take5andchat.org.uk
  4. Offer pastoral support to parents of children with additional needs. There is so much to celebrate and enjoy in parenting a child with additional needs, but there are only so many times that you can clear up poo before you really just need to just talk to someone about the hard stuff (no pun intended…).  Maybe linking to Care For The Family’s befriending service might also be a good start? careforthefamily.org.uk
  5. Recognise that many families with a child or children with additional needs struggle financially… Much needed benefits are being cut back or withdrawn leaving families facing real financial hardship.  How can the church help here?  Maybe linking to Christians Against Poverty (CAP) capuk.org, or starting a food bank www.trusselltrust.org could offer practical help?
  6. And don’t forget to pray… Among all of the practical things that can be done, and there are many, let’s not forget to lift these families up into God’s presence and ask him to bless them and help them too…  We can do plenty to help, but God can do even more!

These are just a few ideas, there are a great many other ways that churches can get alongside families with children/young people with additional needs.  If you are a church leader reading this, what will your churches response be?  What will you do?  What do you think Jesus would do?

Then let’s make a difference together…

Mark
25th May 2017

Special Needs FamilyImage rights: specialneeds.com

‘Disrupted, Resilient, Vulnerable, Broken, Loving’

One of the things about parenting a child or young person with additional needs, is that life is never predictable…  Just when you think that everything is going along quite well, out of nowhere something will happen that turns everything upside down and breaks it apart again.  That this might happen on a fairly regular basis doesn’t necessarily prepare you for the next time, or give you the answers you need.  It might, however, make you look ahead at what might be the light at the end of the tunnel and cause you to wonder if instead it’s a train just about to run you over!

Being disrupted is normal for additional needs parents, it comes with the territory and even if it catches us out the one certainty to add to ‘death and taxes’ is that it will happen again… and again…

Over the years, we’ve entered into, gone through and emerged from many disruptive periods with James…  Some of them have been because of big changes in his routine such as changes at school, some of them have been due to big changes in James himself as he has developed and grown.  Hitting puberty was a very disruptive time for us all!  Sometimes the causes of the disruptive periods can be less obvious to spot, such as the current one where James is refusing to use the school mini-bus to go in to school.  He happily uses it during the rest of the day if they go out on a trip, and to come home at the end of the day (with the same pupils, escort, driver etc).

As James is non-verbal, it is important that we don’t ignore these disruptions, but try to work with him to understand what he is trying to communicate to us through them.  It might just be that as an almost 15-year-old teenager he finds mornings hard and prefers Dad to take him in to school a little later; on the other hand, there may be something deeper that is scaring or unsettling him about going on the morning mini-bus ride.  As far as we can tell there has been no trigger incident, but we need to consider all possibilities…  What matters most is that James feels safe, cared for and is able to communicate his feelings in a way that we can understand and respond to.

While sometimes these disruptive periods can be hard for us as parents, with the recent episodes it’s involved lots of juggling of work responsibilities etc, one thing that this does build in us is resilience…

Resilient’…  I remember the first time I saw that on a Social Services form, describing us as a ‘resilient family’; and yes, our experiences over the years have built resilience in us.  Our lived experiences have also enabled us to be able to help others, especially through the additional needs ministry work I do through Urban Saints and the Additional Needs Alliance.  That doesn’t mean that there aren’t times when it’s hard, when we feel like we’ve been run over by that train, or when like this morning I was stood by the window looking out over the garden and longing, just once, to know that the day would all go to plan (shortly afterwards it all broke apart, but thankfully came back together again by mid-morning!  A typical day!)

Just because we’re busily serving God by growing an additional needs ministry doesn’t mean we’ve got it all together and have all the answers.  It doesn’t mean that we’re bullet proof…  We are as vulnerable and broken as anyone else, in fact our vulnerability can increase because of the work we do, as the enemy prowls around looking to find ways to cause harm to God’s work.  But God knows this, and teaches us that it is in our vulnerability and our brokenness that he can use us to serve him and to serve others.  It is because we are vulnerable, because we are broken, that what God does in us and through us can have authenticity and integrity.  If we felt that we had all the answers but had no lived experience, no scars, no stories of disruption, resilience, vulnerability and brokenness to offer then we would have very little of real value to give.

Paul writes that If I could speak all the languages of earth and of angels, but didn’t love others, I would only be a noisy gong or a clanging cymbal.” I Corinthians 13:1 (NLT)
I know what he means, as the experiences, scars, disruption, resilience, vulnerability and brokenness I speak of are united in love.  Love for James, love for our family, love for those we serve and support, and love for God who is there with us through it all.

I’ve mentioned before my favourite worship song, Cornerstone.  There are many reasons that it speaks to me, but this part touches me the most, “Christ alone, Cornerstone, weak made strong in the Saviours love. Through the storm, He is Lord, Lord of all.”

It is Christ, alive in us and working through us, that binds the disruption, resilience, vulnerability and brokenness together, and makes something beautiful out of it all… Love.

Mark
18th May 2017

Image rights: ‘Broken Beautiful’ Teresa Shields Parker

‘Lessons From Exclusion’

The opportunities to make good or bad choices regarding children and young people with additional needs or disability exist in our church based work every week. A few months ago I wrote a blog post ‘Haircut Sir?’ that included a brief story about a youth leader being put through to my ‘phone one day whose opening line was; “I’ve got this lad in my group, he’s got ADHD and he’s a nightmare. What can I do to exclude him?”  In this week’s blog post I expand this story a little and try to draw some learnings from it.

I’ll always remember that call, and the shock I felt when the leader spoke of exclusion.  Clearly there was a story here that needed to be listened to and understood, so I took a deep breath and asked the leader to explain to me what had happened…

This was a church youth group’s mid-week club night and it seemed that during the ‘talk time’ this lad had started to get a bit unsettled, showing early signs of anxiety and stress, struggling to cope with the expectation that he was to sit still and listen to the talk for 10-15 minutes.  Seeing these signs as disruptive behaviour, the leader had told him that as he couldn’t sit still and listen he wasn’t going to get tuck this week.  The lad liked tuck (who doesn’t like tuck!) and so things ratcheted up a notch or two with the lad becoming more agitated and unsettled, and now feeling upset that he was going to miss tuck!

The leader responded by saying that as the tuck penalty hadn’t worked, the lad was suspended from club for a week and so couldn’t come next week.  Next week was party night and the lad had been looking forward to it immensely, so things continued to escalate and eventually he was sent home.

The leader told me that this lad had always been disruptive during talk times, could not sit still and listen, and so this had been happening for a while.  The leader had reached the point where he just wanted to exclude the lad so that the problem would go away.

I rewound the conversation with the leader asking him to identify all the times that opportunities had been missed to support this young person, to recognise his needs and to help him to manage his stress and anxiety.  ADHD is often misunderstood as being all about behaviour, but there is often a lot more going on which can include:

  • Low concentration; finding it hard to focus, may fidget, may fall behind others.
  • Reduced attention to detail; can also struggle with problem solving.
  • Impatience; can find waiting or queuing hard, may shout out answers too soon or interrupt.
  • Social skills; can find it harder to make or keep friends, sometimes talk too much, struggle with facial expressions/body language (very important elements of communication).

Now this list isn’t comprehensive, and not every young person with ADHD will struggle in all of these areas, however I think if I was finding some of this hard, and wasn’t getting much if any support to help me, it’s just possible that it might work its way out in my behaviour!

As I explored this with the leader, we looked at the opportunities that had been missed to support the lad earlier; there were many…

  • The leader had mentioned that the lad had “always been disruptive during talk times…”, so this was a recurring, weekly event.  Albert Einstein may be misquoted as saying that the definition of insanity is doing something over and over again and expecting a different result, but the saying still holds true.  Knowing that talk time was difficult for this lad, but doing nothing differently, nothing to support him, and expecting a different result, was never going to work.  Understanding that the lad found this part of the programme hard, and so both modifying talk time so that it was more inclusive, as well as supporting the lad with a tailored strategy to enable him to stay engaged, could have made a difference.
  • Once the early signs of the lad becoming anxious and stressed started to surface, instead of resorting to punishing the lad by saying he couldn’t have tuck, the leader could have used a pre-agreed strategy, arranged with the lad himself, or with his parents if he was younger, to help him to cope. This would be an individual plan, but could include access to a ‘chill zone’, or the use of fiddle toys, among a range of possible solutions.
  • When things had escalated further, the lad’s increased need for support and help was met with further unfair punishment. Children’s and youth work is relational, we build trust and mutual respect with children and young people by investing in relationship building with them.  What this lad was learning here is that at a time when he needed support and help the most, he was getting pushed away.  If the leader had invested in the relationship with this lad, it is possible that the lad may have been able to alert him earlier to the anxiety and stress he was feeling, before things developed to the point where it was overwhelming him.

Fiddle Box

The leader finished our call saying that he was going to call the parents of the lad straight away, to apologise and to invite him back to the party the next week, by which time a strategy to support the lad, worked through with them, would be in place and known by the whole team.

Taking the time to understand each child or young person individually, to understand what they find hard and why, to understand how they cope (and sometimes fail to cope) and why; to help them to understand that we are there for them, to help them and to support them, all of this is so vitally important.  So often, the challenging behaviour that we might see, and wrongly judge them for, is a final cry for help when we’ve missed so many other pleas for help and support already.  It’s a last desperate way of trying to get our attention, or a final attempt to respond to their overwhelming urges.

As I’ve talked about before, however we look at this, we must put the child or young person first; do everything we possibly can to remove or limit stress and anxiety, ensure the necessary routines are followed, and so help them to cope… Putting their needs above our own; us doing the adapting rather than expecting the child to.

Tuck anyone?

Mark
27th April 2017

Image rights: iStock (Header), Urban Saints (Fiddle Box)

‘This Little Light Of Mine’

Sometimes, I’m really surprised by people… in a good way.  Sometimes, in circumstances that could go badly wrong, you see the best of people in unexpected ways.  Sometimes, angels appear where and when you least expect them to…

A few days ago I needed to pay a cheque (yes, they do still exist!) into the ATM outside of the Winton (Bournemouth) branch of Santander, but needed to take my son, James, who has autism and associated learning difficulties (including being non-verbal) with me as there was no-one else at home to care for him at the time.  James enjoyed the trip out, we paid the cheque in, and as I turned to guide James back to our car (parked just down the road), he neatly side-stepped me and bolted through the automatic doors into the bank!

Santander Winton
He raced past everyone, including a couple of initially startled staff, and straight to the small customer meeting room at the back of the branch (thankfully, no-one was in there arranging a loan!)  He sat down and stubbornly refused to budge…  The Santander team were outstanding; they asked if everything was OK (which was a work in progress at the time!) and then asked how they could help…  As I was thinking fast to work out what James was up to, at no point did they express anything other than care and thoughtfulness…

Then “Eureka!” I suddenly realised that we had been to the branch a few months back to arrange an additional account, and had brought James along with us.  He had sat in that very chair in that same customer meeting room during our meeting…  At the end of that meeting, Lisa (who we’d met with) had given James a little red Santander torch, something he’d absolutely loved.  It became clear what was going on… James was hoping for another torch!  I broke the news to the now gathered staff…

The Santander team were amazing; they turned the place upside down looking for another red torch, and eventually, after tearing the place apart, found one at the back of a cupboard… several of them were helping by this stage!

Once James had been presented with his torch, which he gratefully accepted, he was then happy for us to leave and go back to the car… with me calling out thanks to the team  over my shoulder as I hurried out of the branch behind him!  I’m so grateful to the Santander team for their care and compassion, they really did go the extra mile…

Through their wonderful help, what could have been a very difficult experience became a much more positive one…  In a time that has seen such bad press for Pepsi, United Airlines, Easy Jet etc, it’s good to have a great customer service story to tell!

Reflecting on this story, Jesus’ words as recorded in Matthew’s Gospel came to mind:

“Also, people do not light a lamp and put it under a bowl. Instead, they put it on its stand. Then it gives light to everyone in the house.” Matthew 5:15 NIrV

James loved his torch, his little light… he wanted it to shine!  Through his visit to Santander, the staff there were able to shine too…  They showed compassion, care and thoughtfulness, never showing any negative emotions as their day was disrupted…  It challenged me to think about how children and young people with additional needs, and their families, are sometimes made to feel in church.  If a bank can get this so right, surely the church can?

James is my ‘little light’ too, inspiring much of the work I do…  Through his stories, our experiences with him, the things he’s taught us, many others have been inspired to make a difference for the children and young people that they know or work with… James’ little light shines around the world, illuminating the way for many…  God is using James in amazing ways… his little light is shining brighter and brighter every day!

SPRNG 022v2
“This little light of mine, I’m gonna let it shine, let it shine, let it shine, let it shine…”

Mark
20th April 2017

Image rights:  Santander

‘Swept Away, But Saved!’

I will never forget the events of that sultry mid-summers day, both for the great significance of them for a young boy called Freddie, but also for how his story speaks to each of us that care for, and about, children or young people with additional needs…

The day had started quite uneventfully, but as it wore on and warmed up my spaniel, Ella, was increasingly desperate for a walk to the nearby river.  She loves a swim, and so I eventually stopped working, and off we went.  As we reached the river we stopped at a section that has a shingle beach about 50-60m long, and I tossed a stick into the river for Ella to fetch.  She willingly swam out to it, collected it and brought it back, dropping it expectantly at my feet.  We repeated this simple pleasure several times, until I saw a mum and her three-year-old boy, Freddie, arrive at the other end of the beach.  Mum settled on a bench while Freddie paddled in the river, happily clutching his little fishing net, busily chasing minnows…

As Freddie tried to catch the little fish, he moved deeper into the water and progressed further along in my direction.  “Freddie, don’t go out too deep, stay nearer the beach”, mum shouted, but Freddie was having too much fun and didn’t hear her; he edged out into the river up to his waist, and further along the river towards where I was throwing the stick for Ella.

“Freddie, you’re in too deep, come in closer to the beach” cried mum, but Freddie wasn’t listening, he was enjoying chasing fish and was now up to his chest in water.  He was about half-way between where his mum was sitting and where I was stood.  I know this river very well, I’ve lived near it all my life, and I know that is slowly shelves out and then suddenly drops into a deep, fast flowing channel.  Seeing Freddie’s progress, I took off my shoes, took my ‘phone, keys and wallet out of my pockets, and started paddling out into the river…

Swept away but saved - 2

“Freddie, you’re out too far, come in now!” shouted mum from the bench.  Freddie was most of the way along to where I was, but was now up to his neck in the river.  Laughing in delight, he took one more step back and disappeared under the water.  I knew it was no good going to where he had vanished, the river runs fast in the channel he had fallen into, so I raced straight out to where I thought I could catch him.  As I reached the middle of the river, chest deep myself, I looked down and deep under the water saw a glimpse of a brightly coloured tee-shirt being pulled by.  Plunging down I grabbed a handful of tee-shirt and pulled Freddie up and out of the deep. There was one chance to save him, and to this day I believe God put me there for that purpose that day.  I notice things, I have knowledge of the river, I am a strong swimmer; if God hadn’t caused me to be there that day, I doubt that Freddie would have been saved.

As I threw the coughing, spluttering, and rather shocked Freddie over my shoulder and started back towards the shore, I noticed that mum, finally, had left the bench and was screaming “Freddie! Freddie!” as she ran along the beach.  She met me as Freddie as we arrived at the shore, snatching him up and hurrying him away, blaming him for not listening to her.

As I stood on the beach, somewhat stunned, and the magnitude of what had just happened began to sink in, my spaniel, Ella, wandered up, dropped a stick by my feet, and looked at me hopefully…

Swept away but saved - 3

So, what does any of this have to do with caring for and working with children or young people with additional needs?  Well, I wonder if each of the characters involved in this little story can be recognisable in the context of the work that we do…

Freddie:
Representing many of us, doing the work we do as parents or as children’s/youth workers, enjoying what we do but often being ill equipped to realise the difficulties that we may be getting into; unaware that we might be getting out of our depth, oblivious to the challenges to come. 

Mum:
Representing those who shout from the sidelines, but do nothing constructive to help.  They may offer opinions or even tell us what we are doing wrong, but do nothing positive.  If everything does go wrong, they may be the first ones to blame us, and say “I told you so…”

Me:
Representing someone who is a bit further along the road than us, someone who knows more than we currently do and is willing to use or offer that knowledge and experience to help us, maybe even to save us when things all go so badly that we are being swept along by circumstances out of our control. Someone who is willing to dive in, get involved, struggle for us and put our feet back on safe ground.

Ella:
Representing someone who brings normality back to our lives. When everything seems to be unravelling, they are just there for us, grounding us, maybe even bringing us something unexpected.

We might initially recognise ourselves in one of these characters and we might recognise other people in other characters too… but perhaps there is a little of each character in all of us…

  • We can all have a little of “Freddie” in us, unaware of our weaknesses, our vulnerabilities; ill equipped and ill prepared to face some of the challenges that lie ahead…  Realising this in ourselves is important if we are to receive the help of others.
  • Perhaps we can have a little of “Mum” in us too, sometimes being critical of others without offering any constructive help…  Let’s minimise this trait in ourselves, for surely we can all be guilty of it at some point.
  • Hopefully we can all have a little of “Me” in us, being willing to seek out and help those a little further behind us on the journey, offering the knowledge and experience we’ve gained to benefit others.  Let’s all try to do this more, to do all we can to help each other.
  • And it would be great if there was a little of “Ella” in all of us too.  Bringing normality to others, maybe just ‘being there’, maybe bringing something unexpected.

The story and this metaphor also remind me of the reassuring words God gave to Isaiah…   “Family of Jacob, the Lord created you.  People of Israel, he formed you.  He says, “Do not be afraid, I will set you free.  I will send for you by name, you belong to me.  You will pass through deep waters, but I will be with you.  You will pass through the rivers, but their waters will not sweep over you…  I am the Lord your God.  I am the Holy One of Israel.  I am the one who saves you.”  Isaiah 43:1-3 (NIrV)

We do not journey alone…  We have each other to share the journey with, to encourage and support each other; to use our experience and knowledge for the benefit of us all, to be there for each other.  And we have our great big God who is there with us too, to help us and to save us…  So let’s all journey on together shall we?

Anybody got a stick?

Mark
6th April 2017

Image rights: Mark Arnold