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

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

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

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

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

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

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

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

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

Blessings,

Mark
16th October 2017

Image rights: unknown

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‘Washing My Autistic Son’s Feet’

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

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

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

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

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

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

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

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

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

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

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

Mark
27th September 2017

Image rights: Authors own and James Pruch

‘The Additional Needs Battle’

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

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

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

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

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

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

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

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

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

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

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

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

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

Mark
10th September 2017

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

‘All You Need Is Love’ – Reprise

Since John Lennon wrote this iconic Beatles song 50 years ago, there has been a fair amount of speculation about what it means, what he was trying to tell us…

“There’s nothing you can do that can’t be done. Nothing you can sing that can’t be sung. Nothing you can say, but you can learn how to play the game. It’s easy.  All you need is love…”

So why am I (once again) writing about a 50-year-old Beatles song in a blog about inclusion for children and young people with additional needs and disability?  What do Lennon’s words have to say to us in this context today?

For the last few weeks, my son James, the boy in the main blog picture with me, has been finding things hard.  He is finding it very hard to go out of the house, and over the whole school summer holiday has managed it just three times; he is still really struggling…  We’ve felt helpless as we’ve tried to support him, tried to coax him to come out for a little trip out to some of his favourite places, often in vain…

“Nothing you can do that can’t be done…”  if we’ve tried everything and still have failed, then we keep trying, we keep going, we keep loving.  “Nothing you can say, but you can learn how to play the game…”  we keep pushing the specialists and professionals for other ways to help James, other ideas, we keep learning to play the game, we keep loving.

“There’s nothing you can know that isn’t known…” we know our son better than anyone, we know that he is really finding this hard, we know that because of his Autism he may not understand why he feels like he does, or at least how to communicate it to us.  We do know he seems to find going out scary, but he knows we love him.

“Nothing you can see that isn’t shown…”  we keep looking, keep searching for why he isn’t willing to come outside, seeing into his eyes and seeing his struggling, and loving him through it.  “No one you can save that can’t be saved…” we will ‘save’ James, he will be able to come out again, we will find the key to unlock this with him…  We will love him back to feeling safe out of the house.

“Nothing you can sing that can’t be sung…”  in our trials we sing the praises of our God and thank Him for helping us to help James.  For giving us the energy we need, the dedication and patience we need, but most of all, the love we need.

John Lennon wrote that “It’s easy…”.  It’s not.  But without God with us it would be a lot harder.  Without friends and family praying for us, thinking of us, asking after James, cheering us on, loving us, it would be much, much harder.

But Lennon was right when he wrote “All you need is love, love. Love is all you need…”  Love is the thread that runs through the whole song, and 50 years on it is the thread that runs through all that we are doing for James.  Love sustains us.

Maybe you are caring for a struggling child at this time… whether they have additional needs or not, it’s not easy, it’s hard.  But love does make a difference, the love of God, the love of family and friends, and the boundless, endless love that we have for our children is what we need to keep going, keep fighting, keep doing all we can…

As Paul (the Apostle, not McCartney!) wrote 2,000 years ago; “Three things will last forever — faith, hope, and love — and the greatest of these is love.” 1 Corinthians 13:13 (NLT)

Faith Hope Love

So keep loving, because sometimes, maybe more often than we think, all you need is love…

Mark
31st August 2017

Lyric excerpts and image rights Lennon/McCartney and Capitol Records.

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

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

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

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

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

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

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

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

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

Amen!

Mark
23rd August 2017

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

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

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

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

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

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

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

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

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

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

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

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

3.  There are other things that the church can do

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

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

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

Mark
16th August 2017

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

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

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

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

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

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

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

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

 

‘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…
(https://theadditionalneedsblogfather.wordpress.com/2017/07/19/additional-needs-parenting-unpredictable-impactful-inspirational/)

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.

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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.

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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…

Blessings…

Mark
3rd August 2017

Image rights:  authors own

‘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…

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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.

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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.

Blessings,

Mark
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!!

Mark
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,

Mark
7th July 2017

Image rights:  Mark Arnold, Free