‘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…


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?”

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]


‘There’s No Place Like Home’

“There’s no place like home, there’s no place like home…”  Dorothy’s famous line from ‘The Wizard of Oz’ as she clicked her heels to be magically transported back to Kansas is iconic, but it has become meaningful for a different, and for us rather challenging, reason over the past couple of weeks…

Those of you who read a previous blog of mine, ‘Additional Needs Parenting: Unpredictable, Impactful, Inspirational’ will recall the problems we were having in getting James to come out anywhere with us…

Well, these difficulties have increased and deepened, with James now having been housebound for the last week, and having only had one trip out of the house at all in a fortnight.  Persuasion, encouragement, bribery, visual prompts, cajoling and pleading have failed to help at all…

James just prefers to stay at home, and makes this quite clear in his own way, staying firmly glued to his sofa in his den, surrounded by his things and quite happy to remain there!  When we are all ready to go out, having given James plenty of clues that this is happening, we are greeted with laughter, which if we persist becomes frowns, which if we still persist becomes vocalised sounds of anger (James can’t say many words, but he can get his point across quite well!)  We then have to either a) all stay at home, or if this is unavoidable, b) decide who is going to remain with James.


Church, shopping, James’ school club, planned family trips out, have all been affected.  We have a family holiday coming up, and if we can’t get James out of the house by then we won’t be going!

All kinds of possibilities are going through our minds about what is going on…  James has been struggling with transitions for a while, both at school and at home, is this an extension of this pattern?  Is he feeling a bit tired at the end of a very long term and just wants to chill?  Is he feeling a little under the weather and can’t face going out?  Or is he flexing his 15-year old identity, pushing his boundaries, and showing us that he will decide how he wants to spend his day, not us?  Or is it something else that we haven’t thought of yet?  All possible, but with a non-verbal Autistic young person with very limited communication, it is very difficult to tell!

Other than the likelihood of a cancelled family holiday, there is no major problem with what is happening at this time, but what about when the school term starts again in September?  We both work, and although I can, and do, work from home a fair bit, I can’t do that every day…  and Clare’s work at school definitely needs her to be there!

But even in the uncertainty that all of this brings, God can and does speak…  James and his current challenges reminds me of Jacob and these words from Genesis 25:27 “ The boys grew up. Esau became a skillful hunter. He liked the open country. But Jacob was content to stay at home among the tents.(NIrV)  Even in our differences, our individual preferences, what makes us content, we can see God shaping and molding us, using us for his purposes.  James remains my inspiration, the reason God has called me into additional needs ministry, the source of many great stories (one day I must write that book!), and he teaches me patience, love and understanding every day.


Whatever the answer to this current conundrum is, we trust in God for the future.  We believe that we are in his hands and that there will be a way forward for us all in his will.  It may be that this will encourage us to seek more support and help from others, to ask for more help in caring for and looking after James…  One thing that is for certain is that whatever the journey, it will be one that continues to equip and enable us to reach out to help others.  Our experiences will be used to encourage others in a similar situation, helping them to realise that they are not alone… and neither are we…


3rd August 2017

Image rights:  authors own

‘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!


27th July 2017

Image rights:  Thinkstock

‘Additional Needs Parenting: Unpredictable, Impactful, Inspirational’

Those of you who regularly follow my blog will know that the past week has been a challenge…  In ‘Prayer – We Don’t Always Get The Answer We Asked For’ last week, I wrote about how that day James had refused to go in to school, with all the disruption that had caused…  Things have been quite unpredictable since but the journey, while impactful, continues to be deeply inspiring!

James did go into school the day after I wrote that blog, ending the school week well, but over the weekend he stubbornly refused to go anywhere, preferring to stay at home relaxing and enjoying the entertainment provided in his den!  His only trip out, on Sunday afternoon, was to one of his favourite places, Pamphill Dairy Farm Shop, to do some shopping including an icing covered gingerbread dinosaur…


The unpredictability around being willing to go to school has continued into the new school week too…  So far it is, Monday – yes! 🙂, Tuesday – no! 😦, Wednesday – yes! 🙂.  Thankfully the school summer holidays start at the end of this week, so not long to go!

So where does all of this unpredictability leave us?  How is it impacting us and in what ways are we responding to this positively?  Well, here’s how!

We continue to learn, as we have learned all through James’ 15 years of life so far, that impact and inspiration are two sides of the same coin…  Nietzsche was right when he said “That which does not kill usmakes us stronger(never thought I’d be quoting Nietzsche in my blog!), but I would add that in the case of additional needs parenting it makes us better parents too…  Even at the end of a torrid day, a day where things have all fallen apart, all the plans we made for it lie in tatters, and we’ve just about done with apologising to everyone, it is still possible to count our blessings…  Nobody died and we’re all in one piece…  that might in itself be an achievement worth celebrating some days!

I’ve just read ‘One Thousand Gifts’ by Ann Voskamp, where she shares how she has found joy each day in the midst of so much that is difficult; to chronicle these gifts, simply writing two or three down a day in a book.  She uses an ancient Greek word, eucharisteo (where we get the Christian celebration of the eucharist from), meaning to be grateful, to feel thankful, to give thanks…  even in the storms of life.


I’ve started on my own journey of chronicling one thousand gifts; I’ve got a long way to go but as I look back over some of what I have written over the past few difficult days, I can see joy in the midst of so much that has been difficult…  “Time spent doing jigsaw puzzles with James”, “Learning patience as I help James to cope with his day, and enjoying the sound of his laughter!”, “Answered prayers about transition to bed”…. and so on…

Through the impactful disruption of the last few days in particular, there have been inspirational moments that have brought joy to us all, and that have taught us much about ourselves.  James still has his struggles, but we are learning patience, deepening even further in our compassion and love, seeing into his world more clearly, and helping him to trust us even more.  Realising that if our day gets turned upside down, it’s not the end of the world and there is still much to celebrate… “…enjoying the sound of his laughter!”

Regular readers of this blog will know that one of my favourite worship songs is Cornerstone from Hillsongs, containing as it does these words which have sustained me through many storms…  “Christ alone, Cornerstone, weak made strong in the Saviours love.  Through the storm, He is Lord, Lord of all.”  We journey through the unpredictability, impact, and yes the inspiration, never alone but always with our good Captain at the helm!

So if, like us, you are journeying through unpredictable, difficult, challenging, impactful or disruptive times as an additional needs parent, or as a children’s or youth worker getting alongside someone else’s child, seek out the inspiration, seek out the things to give thanks for… eucharisteo…  and find joy, peace, inspiration and a drawing closer both to your child and to God through them.


19th July 2017

Image rights:  Mark Arnold, Ann Voskamp (One Thousand Gifts)

‘Prayer – We Don’t Always Get The Answer We Asked For’

Those of you that read my previous blog, ‘School Minbus Mystery Mayhem’, will know that we’ve been having some significant issues recently supporting and helping James to get into school…  Once he’s there he has a great time, does really well, and comes home happily, but getting him there is proving harder and harder…

Yesterday, I had some important meetings in the office, which is a 250-mile round trip from home.  I needed to be there and that meant needing James to be in school.  I turned to prayer, asking God to help me to get James to school happily and well so that I could then drive to the office…  I seem to remember I might also have said something about “not minding if the rest of the week was a mess, as long as today works!”  Be careful what you pray for!!

James was happy to go into school yesterday, had a great day there, and came home on the school mini bus easily and joyfully…  A great answer to prayer…  That was yesterday…

Today is my day off…  I had lots of plans, needing to go out to the shops to get some things, go to the bank, a list of errands to run…  All that came crashing down when James point blank refused to budge from his sofa, either when the school minibus came for him (that’s not unusual), or later when I tried to take him in myself (more unusual)…  The throw away words of my prayer yesterday came back into my mind!

We don’t always get what we think we prayed for…  or at least what we want and think we need.  My main focus yesterday was to get to the office and that happened, today is a day off and so isn’t so critical.  If James was going to pick a day to refuse to go to school, today was the better one…  although I still would have preferred him to go in anyway!

Sometimes we get exactly what we prayed for…  my throwaway comment about not minding if the rest of the week was a mess was also answered!

Whatever answers to prayer we get will help us and teach us something if we are really prepared to accept that prayer isn’t a one-way communication, us talking to God…  He answers!  It’s just that sometimes we’re so caught up in our own lives that we’re not listening…

Yesterday evening I was thinking about what this week’s blog might be about…  I had no ideas, but remember saying something about how I’ll know by the time I need to write something!  I got an answer to prayer with that, but not the one I was expecting…

We might pray all sorts of things about our child with additional needs…  Praying for their day, praying about their future, bringing them into God’s presence…  Some people pray about healing…  I don’t pray that for James, his Autism is an important part of who he is and he wouldn’t be James if that changed, but I do pray for some of the things he finds hard to be a little easier, such as communication, and more recently for transitions!

Whatever we pray, knowing that God hears us and answers us, giving us what is best for us, and having confidence that even when the answer isn’t what we expected or hoped for it is the very best answer, is important.  I don’t know why God’s answer to my prayer was for James to refuse to go to school today, I don’t understand it (although I suppose I did suggest it, and it has led to this blog!), but I trust in God and I trust in his very best for me and my family.  If that means I get to share my day off with James today then so be it!  That’s not really a hardship, it’s a joy!  I’d better not make it too much fun though…  there is still school tomorrow!!

13th July 2017

Image rights:  Mark Arnold

‘School Minibus Mystery Mayhem!’

Routine is important in our house, it helps the day run more smoothly and it helps James to cope with the many transitions that the day brings.  Our school-day morning routine has been carved in stone for many years… James is got up at 07:30, comes down to his den to be helped to wash and dress into his school uniform, and to have his breakfast, and then at around 08:15 the school minibus arrives. We move into the hall, put shoes on, pick up his school bag and off we go out to get on the minibus to school…

At least, that’s how things have been since James started in Reception until about two months ago (he’s 15 now)…  Around that time, and it’s hard to be specific as to exactly when (which would help…)  James started to refuse the transition to the minibus in the mornings and made a great deal of fuss about very much NOT wanting to go on it…   Although we’ve had some sporadic success when, again for no obvious reason, he’s happily jumped up and gone onto the minibus (usually about once a week… none this week), it’s generally been a very clear NO.

Plan B involves one of us (usually me) taking James in by car, with all the work-related disruption that a school day starting at 09:15 brings (we usually drop him in at 09:30 to avoid the rush).  He happily comes in with me, goes with me up to his classroom and settles at his desk…

So, we’ve been thinking of theories as to why the sudden change; why James has taken against the minibus, especially as he is generally happy to come home on it still…

Here’s where we’ve got to:

Maybe something happened on the way to school:   We’ve asked everyone involved, but no one can recall any incident or accident that has happened on the minibus run in to school.   That James is generally happy to use the minibus at other times of the day, and especially to come home, suggests this may not be the issue…  Although as he is mostly non-verbal, he can’t easily tell us if something has happened, or what.

Perhaps he struggles because it gets busy/noisy:  James is the first to be picked up, so the minibus is empty and quiet when he gets on it.  As the round continues and more children are collected it gets fuller and noisier…  James might be finding this hard.

He’s a teenager… it’s early:  James generally sleeps well, but finds mornings hard…  He’ll get up at 07:30 when I go in for him, but he’s in a bit of a daze and once dressed slumps on the sofa in his den…  In many ways he is a typical 15 year old lad!  Maybe he just needs a bit longer to ‘rally’ in the mornings than he used to, and prefers to do this at home rather than on the minibus.

He’s prefers ‘Dad’s taxi’:  James likes going out for trips, and a ride out in Dad’s car is usually fun, and sometimes involves food or a trip to somewhere nice.  It might just be that he would rather have a ride into school with Dad than on the minibus with lots of other children.

Mark and James in car

And of course it might be a combination of several of these things… or something else entirely!  Maybe you’ve had a similar situation and figured out what it was, or maybe your child is struggling in a similar way at the moment and you don’t have any answers either?

Or maybe your child is struggling in another way?  Wherever you are at, it’s good to know that you are not alone, that there are plenty of us out there that ‘get it’, and may even be able to offer some ideas…   If you are looking for answers, or maybe have some lived experience to offer to help others, do join us at the Additional Needs Alliance Facebook group, a safe, informative, friendly, helpful space for childrens/youth workers, parents, practitioners and others involved with children/young people with additional needs, to mutually support, inform, help, and cheer each other on…

You’ll find a warm welcome here:  www.facebook.com/groups/additionalneedsalliance

Looking forward to getting to know you!

Every blessing,

7th July 2017

Image rights:  Mark Arnold, Free

‘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.


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,

29th June 2017

Image rights:  SpritualLeadership.com; Thinkstock

‘Precious Moments, Important Memories’

Parenting a child with additional needs or disabilities can be hectic; sometimes it can be a bit overwhelming too, with so much to juggle, so much responsibility, so much unpredictability, so many battles to fight for our child…   So when precious moments come along, little oases in the struggle that is daily life, it is important to cherish them, to enjoy them, to squeeze every single drop of joy out of them…  a bit like we did last Saturday morning…

James is 15 now, a proper teenager…  as a proper teenager he finds getting up in the mornings hard, and prefers a lie-in.  Sometimes a crowbar is needed to lever him out of his nest in the mornings, but this wasn’t the case last Saturday…  last Saturday morning was different, and very special.

We didn’t have a lot going on last Saturday, so it was a slow start for us all…  After a couple of busy weeks, not having to rush out of bed was a welcome change and the opportunity to lie-in a little was taken…  What was unexpected, but delightfully welcome, was what happened next

We heard footsteps coming down the stairs (our bedroom is on the ground floor), and quickly heard James vocalising a few sounds.  His den is at the bottom of the stairs and we thought he was heading there to slowly rally for the new day, but his footsteps continued towards our bedroom…  At first, a feeling of dread grew within us…  James has sometimes found us to hand us something unpleasant (I’ll spare you the details, but some of you might have shared a similar experience!), but as James pushed the door open and came in, he wasn’t bringing us anything other than a lovely smile.

He clambered onto our bed, and giggling with delight he squeezed in between us, pulling the duvet back up as he did so.  With a beaming face full of joy and love he just enjoyed the moment of being with us, snuggling in together…  Now, as I mentioned, James is 15 and as big as we are, and as he spread out in bed after a while there wasn’t much space!  Clare eventually got out to go and make a cup of tea, leaving me and James to some son and dad time together…

We practiced some of James’ repertoire of words; he doesn’t have many, but he enjoyed practicing them and by placing his finger on my teeth and lips he concentrated hard to copy my mouth movements.  We had a story together, made up on the spur of the moment as I didn’t want to leave the bed to get a book.  We even sung a song (well, I sang, James joined in with an occasional word when I paused for him)…  I took the photo at the top of this blog post to capture the moment, it was a wonderful, precious time with my son who is growing up too fast…  How many more times will he come and spend a time like this with me?

As I thought about how precious this moment was, I delighted in the memory of it…  I’m delighting in it again now as I write this.  These are important memories, both for James and for me; memories that will last with us and be significant for us in different but connected ways…

For me the memories will be of having nothing else to think about, nothing else to do, other than the joy of enjoying time with my son; loving him, laughing with him, delighting in him, focussing fully on him.  I will always cherish memories like this, and will keep looking for more opportunities to add to the ‘good memory bank’…  When things are hard, when it’s all unravelling, when I can’t see anything positive at all, that’s when dipping into that ‘good memory bank’ can be so important… reminding me of the good times, which I know will come around again.  Those good memories can sustain, can protect, can build resilience and be so important when it’s a hard day.

And for James, those memories help him to know how much he is loved and cared for…  how important he is to us.  The love that shines from his eyes during those precious times doesn’t go away when he’s having a meltdown or just being a teenage grump…  it can be harder to spot, but stirring those precious memories can bring it to the surface again.

So no matter how busy we are, and believe me I know busy, let’s all cherish those precious moments…  let’s realise that in that moment, no matter what else might be going on, our only priority is to be with our child, to share that precious moment with them, to build those important memories, to lose ourselves in the moment both for our child’s sake and for our own

I’m looking for more of these precious moments every day!  How about you? 🙂

15th June 2017

Image rights: 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.

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!!

2nd June 2017

Image rights: ‘All In’ holiday