‘Posh Brands, Designer Labels, and Additional Needs Parenting’

I was sat in church a few Sunday mornings ago, a brief oasis of calm in an otherwise hectic and unpredictable week of additional needs ministry and additional needs parenting.  The service was great, which was helpful, as I was tired and in serious danger of dropping off to sleep otherwise… there could have been snoring… #awkward

During a pause in proceedings, as I glanced around the room from my seat towards the back of the church, I noticed someone a few rows ahead of me who was wearing a nice embroidered floral top.  What I noticed, however, was that embroidered across the back of the top, between the shoulders, was the brand name… (I won’t mention the brand to protect the wearer!)  I didn’t recognise it, however I understand from those who know about these things that this is a ‘posh’ designer label.  That got me thinking… why would the brand name be embroidered like that on the back of a garment?  The only conclusion I could come to was that it is a status symbol, making a statement to anyone looking at it… “This is a posh brand, a designer label that I can afford to buy.”

I started looking around a bit more then, and noticed others wearing garments with ‘posh’ brand names and designer labels prominently displayed, some that I didn’t even need to ask about!  Now don’t get me wrong, I’m not against people making an effort when they come to church, I just got to wondering about how what we wear, what we look like, might even inadvertently categorise us in some way in the eyes of those who see us, placing us in a particular ‘clan’ in their eyes?

People have dressed to make a point as long as clothes have existed.  One of the greatest human beings ever to grace this earth, Mahatma Gandhi, dressed only in a simple homespun white cotton robe, making a strong political point about injustice as he did so.

As all of these thoughts flew through my mind, I glanced down at what I was wearing.  For the first time I noticed the smear of food that James had wiped across my trousers before I went out, and my first thought was that I was glad that it was only food!  I got thinking about what the ‘brand identity’, the ‘designer label’ of the additional needs parent might be…  possibly it’s crumpled smeared clothing, an unusual difficult to place smell, the latest look in the ‘exhausted’ range?  We must sometimes look a bit of an unusual sight!

Jesus himself, as he sent the disciples out into the world told them “Don’t take anything for the journey.  Do not take a walking stick or a bag.  Do not take any bread, money or extra clothes.”  (Luke 9:3 NIrV)  He also told us  “And why do you worry about clothes? See how the wild flowers grow.  They don’t work or make clothing.  But here is what I tell you.  Not even Solomon in all his royal robes was dressed like one of these flowers.   If that is how God dresses the wild grass, won’t he dress you even better?  Your faith is so small!  After all, the grass is here only today.  Tomorrow it is thrown into the fire.”  (Matthew 6:28-30)

Those words spoke to me, and I hope speak to you as you read this if you too are an additional needs parent…  It really doesn’t matter that much what we might look like sometimes, just being somewhere (church, work, the school gate, wherever…) might be an achievement in itself.  God stands with us in the midst of the chaos and he doesn’t mind what we look like!  The ‘brand identity’ and ‘designer labels’ of the additional needs parent do not need apologising for, they speak of our love for our child, our willingness to put them first, our never-ending God given endurance as we strive to do the very best we can for the child that is our first thought as we wake and our final thought as we (eventually!) drop off to sleep.

These are the garments that God gives us to wear, and I will happily have that embroidered across the back of my clothing, alongside the smears, any day!

Blessings,

Mark
16th October 2017

Image rights: unknown

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‘Accessible Jesus: Modelling Inclusion’

One in five children and young people have an additional need or disability of some kind, and for many their additional needs or disabilities are lifelong and so continue into their adult life.  It is easy for children’s, youth and families workers, as well as church leaders, to be uncertain about how to appropriately support people with additional needs and disabilities, with it being common to see churches either totally ignoring this part of our community or overwhelming them.

In exploring this a little in this blog, and looking at how to support and encourage everyone in our community to belong and participate, it is helpful to see what Jesus modelled for us, what he did that we could follow… As Jesus himself said in John 13:15 “I have set you an example that you should do as I have done for you.”  This in itself could fill several blog posts, but perhaps the three points below give us a useful starting point…

1. Jesus was accessible

 There are many stories of people’s encounters with Jesus throughout the Gospels, including people with a wide range of additional needs and disabilities meeting him; indeed 25 of the 34 miracles recorded in the Gospels involve Jesus interacting with people with disabilities[1]  In many cases, culturally at the time, this was extraordinary; take for example the man with leprosy in Luke 5:12-14, someone who would have been seen as unclean and to be avoided by people at the time.

Jesus met with people where they were, in the street, in the market, by the lake, wherever people gathered.  He didn’t expect people to come and find him in the temple, he went out to them.  And when he met with them, he connected with them physically…  he touched them, reached out to them, he was fully accessible to them.

And Jesus gave time to people, he respected their dignity, he didn’t rush their encounter with him.  Take for example the story in Mark 7:31-35 of the man described as deaf and mute.  He was brought to Jesus by some people, but Jesus took him to one side away from the crowd and then spent time with him, healing him.

So, Jesus was accessible, interacted with people, went to where they were, connected with them physically, gave time to people and respected them…  Some lessons already for us all…

2. Jesus listened and didn’t assume

Just because someone came to Jesus, or was brought to him, who had additional needs or disabilities, he didn’t automatically assume that what they wanted was healing.  He often would spend time asking them what they wanted from him.  In Mark 10:46-52 we see Jesus’ encounter with Bartimaeus, a man who was blind.  Once again Jesus is on the road, and he heard a man crying out to him “Jesus, son of David, have mercy on me!”  There was a crowd going along with Jesus, but he heard the man and stopped, and very importantly, he asked the man a question “What do you want me to do for you?”

The man was blind, the crowd must have wondered why Jesus asked this question, but Jesus didn’t assume that he knew what the man wanted.  The man himself then answered “Lord, I want to see.” and Jesus gave him sight.  It was Bartimaeus’ choice.

In Matthew 8:5-13, a Roman Centurion came up to Jesus. The Romans were the invading force in Israel, hated by most, but Jesus took the time to listen to the Centurion, to hear what the man wanted from him.  He wanted Jesus to heal his servant, who was not with him but at home.  Jesus listened first, and then responded.

So, Jesus took time, and listed to people. He didn’t assume that because they had additional needs or disabilities that they wanted healing; Jesus asked.  Maybe we should ask more too…

3. Jesus thought about a person’s faith

In the story we’ve just looked at regarding the Roman Centurion and his servant, Jesus comments about the faith of the Centurion, “I tell you the truth, I have not found anyone in Israel with such great faith” (Matthew 8:10).  Jesus was often primarily interested in the faith of the person, this was most important to him, rather than their additional needs or disabilities.

A little later in Matthew’s Gospel (9:27-31) Jesus encounters two men who were blind.  Again, Jesus treats them with respect and dignity, allowing them to follow him indoors where he could spend time with them, listening to them.  Jesus asked about their faith, and only when they had answered that they did indeed believe in him did he then heal them.

In Luke 5:17-26 Jesus is speaking to a room full of people when some friends bring a man who couldn’t walk to see him.  As they couldn’t get in through the door they lowered the man through the roof in front of Jesus.  Jesus first action was to forgive the man for his sins, “When Jesus saw their faith, he said, ‘Friend, your sins are forgiven’”.  Only after the Pharisees and teachers of the law challenged him about his actions did Jesus then heal the man, to demonstrate his authority.  (See also my previous blog post, ‘Faith More Important Than Healing’ https://theadditionalneedsblogfather.wordpress.com/2017/02/17/faith-more-important-than-healing/)

All who believe in Jesus are full members of his kingdom.  This is true for anyone who believes in him, regardless of their additional needs or disabilities.  John 3:16 doesn’t use the word “whoever” accidentally!

So, Jesus thought first about the faith and eternal salvation of people before their physical or mental healing.  Maybe there is a lesson for us there too, in how we view people, all people, and what we see as the primary purpose of ministry; whether it is with children, young people, families or adults (or everyone together!) and whether there are additional needs or disabilities, or not…

In Matthew 28:19, Jesus tells us to “Go and make disciples of all nations…”  of all peoples;  the message is clear, this includes everybody, and Jesus in his ministry showed us how! The accessible Christ, modelling inclusion for all…

Blessings,

Mark
6th October 2017

Image rights: Unknown

[1] Barrier-Free Friendships by Joni Eareckson Tada and Steve Jensen, “Imitating Christ in Friendship”, Zondervan Publishing House, 1997. p. 41.

 

‘Washing My Autistic Son’s Feet’

James, my 15-year old autistic son, gets cold feet…  Sometimes this is because he often prefers to go barefoot, sometimes this is because his blood circulation isn’t as good as it might be, or maybe it’s a combination of the two.

He likes to have his feet rubbed, to warm them up, but recently he has also enjoyed having his feet immersed in a bowl of warm soapy water, and washed.  The sensory feeling of having his feet in the warm water is really enjoyable, and having us washing his feet with a flannel tickles and is fun…  the floor sometimes gets a wash too, as do we!

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As I wash James feet, there is another thing going on as well;  I am serving James as I wash his feet, being like a servant to him.  I might be his Dad, he might look up to me in many ways and (sometimes!) do what I ask him to, but in that moment I am on my knees washing his feet, serving his needs.

To me, it reminds me that a vitally important part of my role as James’ Dad is to meet his needs, to do whatever needs to be done to help him.  To be willing to put down whatever I think of as ‘important’ in that moment, whether that is work, church, whatever, and to wash his feet.

Some of you will be aware that my role at Urban Saints has changed recently; I used to be Chief Operating Officer (COO) at Urban Saints, with responsibility for the day-to-day operational running of this national children’s and youth ministry.  Alongside that, for several years, God led me and enabled me to build up the additional needs ministry area within the organisation, helping children’s, youth and families workers, among others, to reach out to, include, and create places of belonging for everyone.

This is now my full-time role; I put down my COO role in August and am fully focused on the additional needs ministry role…  and I’m loving it!  I feel like God has called me to be a servant to others in this area, to meet their needs, to do whatever I can to make a difference… metaphorically, I’ve been called to serve, to wash feet.

As I wash James’ feet I see the joy on his face through the connection we have; he chuckles and laughs, he delights in what we are doing and in the trust and relationship that we have.  When I spend time with others helping them to think about how to be more inclusive in their church or group, how to create places of belonging for all the children and young people they are working with, and how to disciple them in their faith, I see joy and delight in their eyes too… we build trust and relationship together, and we have a laugh as well!

jesus-washing-the-feet

In John 13:1-17, Jesus washes the disciples’ feet…  He serves them, he ministers to them, he guides them in their understanding.  He says to them “I, your Lord and Teacher, have washed your feet.  So you also should wash one another’s feet.  I have given you an example. You should do as I have done for you.  What I’m about to tell you is true.  A slave is not more important than his master.  And a messenger is not more important than the one who sends him.  Now you know these things.  So you will be blessed if you do them.”  (v14-17 NIrV)

As I wash James’ feet, God teaches me humility and servanthood;  as I spend time helping children’s, youth and families workers to be inclusive, that humility and servanthood is the attitude I try to adopt and encourage others to take.  We work together to see change happen… to serve, to wash feet.  Because when we’re on our knees washing feet it’s hard to feel self-important, it’s hard to feel superior, it’s hard to consider ourselves ‘better’ than the person we’re serving.  We put their needs first, they are the focus, this is the most important role for us in that moment, nothing else matters.  We meet their needs, we change, we don’t expect them to.

Whether as you read this you are a parent with a child with additional needs, or you work with children, young people or families where there are additional needs present, let us all metaphorically roll our sleeves up, get a bowl of warm soapy water, get down on our knees adopting an attitude of servanthood as Jesus himself showed us, and wash some feet together….

And as you do so, look up at the face of the child or young person you are serving, you might just catch a glimpse of Jesus smiling back at you…

Mark
27th September 2017

Image rights: Authors own and James Pruch

‘The Additional Needs Battle’

The word ‘Battle’ has been at the forefront of my mind this week;  it has been a key part of my week in several ways, through experiences and as a place.  The three reasons that this word has been key for me this week are linked, personal, ministry and place, and so come together into this week’s blog…

‘Battle’ (noun):  To struggle tenaciously to achieve or resist something

Personal:  This week has been tough, it’s been a struggle.  James (age 15, Autism Spectrum Condition and Learning Disability) has refused to return to school, and although he has made little steps in the right direction, and has made short evening trips out of the house, we are a long way (or a miracle) away from a return to school any time soon…  It feels like a constant battle at the moment to get James to cooperate with even the very basic things that he has been happy to do for years.  Sometimes we are able to celebrate the victories, seeing things moving in the right direction, but then sometimes we unexpectedly find ourselves in retreat, trying to hold hard fought ground but feeling like we’re losing.

Ministry:  This week has (finally!) seen me being able to fully focus on my new full-time role in Urban Saints as Additional Needs Ministry Director.  Having laid down my previous Chief Operating Officer role, handing it over to my newly recruited replacement, I am released to the calling I believe God has placed on my heart; to enable, equip, encourage and envision children’s, youth and families workers to reach out to, include, create belonging and faith development for all with additional needs or disabilities.  It’s taken a year to get here from the point when God spoke clearly to me that I needed to focus in this area.  It’s felt like a battle at times to work through the transition, both from a work and family perspective.  There have been times when I’ve wondered if I would ever get here…  When I doubted if I had heard correctly from God at all…  But then I continued to see God’s hand at work, and encouragement and affirmation kept coming through to support and lift me up.

DI4OLIXXgAARiUe

The doubts and feelings of defeat we have, either as parents or in ministry, are important to recognise and deal with.  They are one of the most effective tools of the enemy to attack us and pull us down, to turn us away from what we are called to, to convince us that it’s just all too hard and that giving up and walking away would be so much easier…  But, to do so would be to ignore a couple of very important things… 

Firstly…  the reason we are under attack is because we are dangerous to the enemy.  He wouldn’t be bothered with us unless we were a threat.  By the way we parent our child, showing unconditional love through all the struggles, we are modelling what Jesus taught us, to love each other as we love ourselves.  By the way we serve in ministry, reaching out to others in Jesus’ name, we are taking the Gospel to all peoples.  And the enemy hates us for that, and wants to bring us down, to stop us, to cause us to quit, to convince us that we can’t win this battle.  Maybe if we were alone, and he was just attacking us, he would be right, but that’s where the second important thing comes in…

We are not alone…  we are on God’s side, and he is on ours…  The victory has already been won, these battles we face are just skirmishes, but even as we struggle in these times we are not on our own…  remember the words of Elisha:

The servant of the man of God got up the next morning. He went out early. He saw that an army with horses and chariots had surrounded the city. “Oh no, my master!” the servant said. “What can we do?”  “Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.”

 Elisha prayed, “Lord, open my servant’s eyes so that he can see.” Then the Lord opened his eyes. Elisha’s servant looked up and saw the hills. He saw that Elisha was surrounded by horses and chariots made of fire.  (2 Kings 6:15-17)

thathemaysee

We are not alone, we do not battle alone, if we open our eyes, our hearts, our minds, our very souls, to the Lord, he will reveal to us that he is there for us, with us.  His army stands alongside us, and he gives us each other to support us too.  Which brings me to the final reason the word ‘Battle’ has been important to me this week…

Place:  The autumn tour of the Urban Saints ‘All Inclusive?’ training programme that I run, helping churches to be inclusive, create belonging and develop faith in all children and young people, particularly those with additional needs and disabilities, started this week in the town of Battle in East Sussex.  It seems apt that, with all that’s been going on, the first place for me to visit would have the name that best represents my struggles!  And it was a victorious evening, really great times sharing about inclusion, belonging and faith development with a positive and responsive group of children’s, youth and families workers.  A wonderful start to the autumn tour and a reminder that I’m doing what God has called me to do…  That feeling of being in exactly the right place is very special indeed!

So, when we feel that we are in a battle, whether personally or in ministry, let us remember that it means we’re doing something right, and that we’re not doing it on our own…  We’re doing what God has called us to, what pleases him…  Let’s keep bringing it back to God and recognising that he is with us, that his army stands alongside us, and that we stand alongside each other…

And with a mighty battle roar, let’s throw ourselves back into the fight!  Amen!

Mark
10th September 2017

Image rights: English Heritage (header), Urban Saints (banner), author (others)

‘Are Parents To Blame For Their Child’s Disability?’

That blog title caught your attention, didn’t it?  A controversial topic to grapple with in this blog post, but one that is so important for us all to understand and to communicate effectively…

Some 2000 years ago, Jesus was asked that very question, as recorded here from John 9:1-3 “As he went along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned’, said Jesus, ‘but this happened so that the work of God may be displayed in his life…’”  Back then, it was commonly thought that the sins of the parents caused disability in their children, hence the question that Jesus was asked.

In the 2000 years since, thankfully, our understanding of disability has increased enormously; however the belief that parents are to blame for their child’s disability or additional needs still clings on in some communities and even church denominations.  Whether it is the belief that the sins of the parents are to blame for the disability itself, or their perceived lack of faith when it comes to unfulfilled prayer for healing, the finger of blame is firmly pointed at the parents, in direct contradiction to what Jesus taught.

Imagine what that must be like for these parents…  Firstly, they have gone through all of the emotional turmoil of discovering that their child has a disability or additional needs, the confusion, shock, maybe even sense of grief, that they may have experienced through the process of diagnosis (if they’ve even got that far!).  They may have already been poorly treated and unsupported by their community or church at that stage, resulting in an unwillingness to tell anyone about the needs of their child as they might be fearful of the reaction.  If they did tell their church, they may have been offered prayer for healing of their child.  Now I firmly believe that God heals, I’ve seen and heard examples of this, the Bible teaches us about healing, but I’m also very aware that often God doesn’t heal.  Translate that into a church setting where a child isn’t healed after prayer, sometimes after repeated prayer, but instead of recognising that this is up to God, blaming the parents for a lack of faith; it is unspeakably cruel to both the parents and the child, and is totally wrong.

Now in the midst of all of this, it is fair to point out that some children are disabled as a direct result of their parents’ actions; children born with foetal alcohol spectrum disorder for example, or children born with disabilities caused by violence inflicted on their mother during pregnancy by an abusive partner.  Even in these situations, however, blame can be such a negative and harmful response for all involved.  Each of these cases, and others like them, are really important, and are not trivialised at all by this blog, however they are a very small minority of the total number of children born with, or developing, a disability or additional needs.  In the overwhelming majority of cases, this is nothing to do with the parents at all, unless you deem to hold them responsible for passed on hereditary conditions…  I don’t.

John 9 1-3
But what about that final part of what Jesus said…
 We’ve almost lost sight of it in the discussion about who is or isn’t to blame… a sad indictment on our modern society that it always has to be someone’s fault, there always has to be someone to blame…
Jesus said ‘but this happened so that the work of God may be displayed in his life…’.  In this case, Jesus did choose to go on to heal the man, giving him his sight, so that the work of God was indeed displayed in his life in that way.  The work of God can, however, be displayed in and through the life of a child, young person or indeed an adult with additional needs or a disability in many ways, whether they are healed or not.

I’ve written before about how I don’t pray for healing for my 15-year-old autistic son any more, and haven’t done for many years.  His autism is a neurodiversity; it means he lives in and responds to the world differently to me, understands and communicates differently.  Sometimes that can be really hard for him, and for me, but if his autism was taken away, he wouldn’t be James any more.  I do pray that some of the things he finds hard might be easier and less stressful for him, such as that we could communicate more effectively, but not for his healing.  I firmly believe that Jesus’ words, ‘but this happened so that the work of God may be displayed in his life…’ are just as relevant for James as they were for the man he encountered 2000 years ago.  James is the inspiration for the work God has called me to, thousands of children and young people are included and belong in their church because of this work, the work of God.  I doubt I would have heeded God’s call to this work without James.

God can work though each of your children too, so that his work may be displayed in their lives.  Instead of parents being wrongly blamed, or even worse parents blaming themselves, for the disability or additional needs of their child, let our children inspire us to what God has called us to, let us celebrate how God is working through our children and let us do away with fault, blame, guilt and all of the other negatives that are the work of the enemy.  That same Jesus who spoke the words we’ve been looking at won the victory over the enemy too, and we share that victory with him!  Let’s all pray that the work of God may be displayed in all of our lives…

Amen!

Mark
23rd August 2017

Image rights: Header (Fawne Hansen), Bible text (annvoskamp.com)

‘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

‘The Lord’s Prayer & Additional Needs Parenting’

As I was sat in church last Sunday morning, enjoying the opportunity to relax and be in the congregation for a change, we reached the part of the service that is included every week, a part that is so well known that we don’t really need the words to be provided; the Lord’s Prayer

There is always a risk that these wonderful words are so well known to us that we might say them almost without thinking about them. To trot them out parrot-fashion in a way that lessens them somehow.  As I sat there last Sunday, speaking these o-so-familiar words, I found myself thinking about them in a different way…  thinking about them in the context of parenting a child with additional needs…  I’ve thought about it a bit more since, and so here’s where I got to…  I hope you find it helpful!

 Our Father in heaven,  “Father”, it’s great that I can call you that…  My son can say “Daddy”, it’s one of the few words he can say, but when he says it, it just melts my heart.  Is that what happens when I say “Father” to you?  I think it is, because I know you love me even more than I love my son, and that’s A LOT!

hallowed be your name,  Hallowed means holy, sacred, and yet you care about me and you clear up after me when I make a mess, which is a lot of times.  Parenting a child with additional needs, I know what clearing up mess can be like, and how it sometimes feels, but you clean me up and sort me out time and time again…  Never minding, always loving.

your kingdom come,  Sometimes, through the beautiful look on my son’s face as we pray, or the light in his eyes as I gently sing “Jesus loves me, this I know…” to him, with him joining in with “Yes!” Jesus loves “Me!”, I see a tiny glimpse of heaven as your Holy Spirit ministers to him…  Thank you!

your will be done, on earth as in heaven.  Whatever your will is for us, let it be done. However you want to work in us, through us, to share your will with others, we want that too…  Use the journey we are on, the good stuff and the challenging stuff, to help, support and inspire others.  Let us always serve you…

Give us today our daily bread.  You always give us what we need… more than we need.  Our daily bread is all those things that sustain us, and that includes much more than food.  Our daily bread includes the joys, the delights, the thrills of additional needs parenting, filling us up and nourishing our minds, bodies and souls for when a harder day comes; giving us reserves to draw upon when we need them.  You sustain us in every way.

prayerhands-prayer-thinkstock

Forgive us our sins   And there are so many…  So many times when we say, think and do things that we know we shouldn’t…  Days when we walk into a poo smeared room and swear before we can stop ourselves.  Days when we are so tired that we just sink into self-pity and think once again “why me?”  Days when we wouldn’t share our darkest thoughts with anyone…

as we forgive those who sin against us.  And this can be so hard!  But we must forgive the person who is sneering at our child while s/he is having a meltdown; or the person who is offering us their uninvited opinions on our parenting ability.  Forgive the Social Worker who has just told us our respite care has had to be cancelled; forgive those who would take away much needed financial support…  If we can’t forgive, bitterness and resentment fills the void.  As we forgive, so we receive release from these negative, life-draining emotions, being filled instead with God’s grace and love.

Lead us not into temptation  Oh, and it’s so easy to be tempted as well…  Temptation to be economical with the truth when filling in applications for much needed financial support.  Temptation to find comfort and temporary satisfaction in unhealthy or inappropriate ways, just to feel better about life for a few brief moments.  Temptation to say to someone what we actually think about them and their opinions when they just don’t get it (see ‘forgive’ above!)

but deliver us from evil.  Yes Lord, save us, because all of the lack of forgiveness we might be harbouring, the falling to temptation that we might be doing, comes from the enemy.  Help us not to give the enemy any power over us; especially don’t let the enemy use our family, our child with additional needs, as a way to get to us.  Let us remember the truth in these word, “Christ alone, Cornerstone, weak made strong in the Saviour’s love. Through the storm, He is Lord, Lord of all.”

For the kingdom, the power, and the glory are yours  It’s all yours, all for you…  We pray that you will give us what you know we need, equipping us so that we can serve you and others, and through serving give honour and glory to you and your kingdom.  Use our life journey, our family experiences, our passion, our knowledge, which all comes from you, to the benefit of others…

now and for ever. Amen.  Eternity has started already… new life has begun!  Help us not to waste a second but to make it all count.  As James is able to say… “A-men!”

Every blessing,

Mark
29th June 2017

Image rights:  SpritualLeadership.com; 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

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