‘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

‘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

‘Additional Needs Families And A Truly Supportive Church’

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

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

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

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

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

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

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

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

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

Then let’s make a difference together…

25th May 2017

Special Needs FamilyImage rights: specialneeds.com

‘Disrupted, Resilient, Vulnerable, Broken, Loving’

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

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

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

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

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

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

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

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

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

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

18th May 2017

Image rights: ‘Broken Beautiful’ Teresa Shields Parker

‘Parents Out Of Fuel’

Some days stay in the memory a long time… This one I will never forget; it was the day that I learned what a terrific sense of humour God has!  And I was on the receiving end…

As so many stories do, this one started quite simply…  I set off from the Urban Saints offices in Luton to travel to a venue in Sussex to run an evening training session.  I remember wending my way around the M25 glancing at two displays… the one on my SatNav telling me how many miles I had to go, and the one on my dashboard telling me how many miles of petrol I had left…  At this point, the dashboard was winning handsomely… At this point…

Around the bottom of the M25 I went, oh there’s a service station, shall I stop to fill up?  What, at those prices? Surely I’ll find cheaper petrol later, after all I’ve got enough to get to my destination…   Down the M23 I went and then my SatNav took me off onto an ‘A’ road…  Now I’ll find a cheaper petrol station…

Then several things happened very quickly…  It got dark, and immediately afterwards my SatNav took me off down some tiny country lane, then an even smaller one…  Miles went past as I followed the firm instructions of my electronic navigator, now hopelessly lost without it.  I was also alarmed to see that the battle between the mileage readouts on the SatNav and the dashboard had reversed fortunes; I now didn’t have enough petrol to get to my destination and what I had left was going down fast!

Into single figures the fuel remaining readout went,  then in the time it took Ted Rogers (for the more mature reader) it was 3-2-1 and then a plaintive looking 0 blinked accusingly at me from the dashboard…  no fuel left…  Now in the comfort of home as I write this, I can reassure myself that they build a few miles into these things so that when it hits zero, the car doesn’t just stop, but in the middle of a dark wood on a country lane with no idea where I am, reassurance was at a premium!  So I prayed…

“Father, you know the pickle I’m in, it would be great if you could see your way to finding me a petrol station very quickly please!!”

And, to be fair, as answers to prayer go this one was pretty quick!  Within 60 seconds I emerged from the gloom and onto an A road, a brightly lit A road, with a petrol station directly opposite!  “Wonderful, thank you Father!”  I lovingly cried as I pulled onto the forecourt, the 0 on my dashboard now looking quite desperate…

As I pulled in, I noticed that the first petrol pumps had those “Sorry Out Of Use” hangers on… So did the next set, and the next… As I looked around increasingly frantically, they ALL had those mocking, vindictive little signs… “Nooooooo!!!”  The shop was open so I rushed in and enquired whether they had any petrol at all… “No, sorry mate, we’re completely out!”   So was I, and apparently the next petrol station was some five miles up the road!

Sorry out of use

I stormed back to my car… Even the 0 on my dashboard seemed to be mocking me… I had a word with God (possibly several) about his so-called answer to prayer, very funny, very humourous indeed…  to which he replied that he had given me exactly what I had asked for (which, to be fair, he had) and that I should be more specific…

Right then, you want specific?  Try this… “Can you please allow me to drive to the next petrol station without running out of fuel, for it to be open, to have plenty of fuel in pumps that work, to take credit cards, including the card I have, for the credit card machine to work….”  (I may have still been listing the requirements when I arrived at the next petrol station, which of course delivered on all of these expectations as well as a chocolate bar… comfort food was also needed!)  I had learned a lesson… general prayers aren’t as useful as specific ones…  Ask for exactly what you need… God knows anyway, but he wants us to think about it properly first.

So, what has any of this got to do with additional needs parenting?  Well, there are times when we are simply out of fuel, the zero is flashing on our dashboard.  We’ve been drained of all of our reserves, and we’re empty…  Those are one of the times when we need to be specific about our prayers… Not what we might want at that point, but what do we really need?  What is going to help us the most?

By thinking carefully about this as we pray, God can continue to use us, even in our weakness.  In our brokenness, we can still serve him if we allow him to teach us as he works with us to sort things out.  And we grow in the process…


If that first petrol station had had fuel, I could easily have thought “Hey, God will just sort it for me every time I’m a bit short of fuel/money/food etc… I’ve just got to ask and there it will be!”  But by teaching me this lesson, he showed me that I need to think through my actions and my needs, and learn to receive wisdom, knowledge, understanding, love and more from him, these are the more valuable gifts…

As an additional needs parent, sure there are times when an extra pair of hands, or a moments peace, or even a comfort chocolate bar would be nice, but wisdom, knowledge, understanding, love, these are the things that God longs to share with us…  And they are wonderful gifts to receive…

“Joyful is the person who finds wisdom, the one who gains understanding.  For wisdom is more profitable than silver, and her wages are better than gold.”  Proverbs 3:13-14 NLT

Now, where’s that emergency petrol tank…

4th May 2017

Image rights: Telegraph (Header), Free (Petrol Pumps), DesiringGod.org (Prayer)

‘Lessons From Exclusion’

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

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

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

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

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

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

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

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

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

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

Fiddle Box

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

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

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

Tuck anyone?

27th April 2017

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