‘Treasure In The Darkness’

‘Return of the Night Drives!!’ No, not a new film, but a recommencing of night time nocturnal adventures with James, the first for a few weeks!  We were out earlier this week for well over an hour, having a wonderful time exploring the local area in the dark, visiting the airport, finding other places where there are bright lights that shine in the darkness.

Regular readers of my blog will know that James (age 15, Autistic with Learning Disabilities and Epilepsy) has been struggling to leave the house; his hesitancy to leave his ‘safe place’ being fueled by anxiety that he might be taken to school.  We’ve had some success getting him to come out at night, when it is less likely that school would be the destination, although this had tailed off a bit in the past few weeks too… until Tuesday.

Suddenly, unexpectedly, and delightfully, on Tuesday evening at about 9pm, James decided he wanted to go out, heading to the hallway and gesturing towards his shoes.  That he (and I) were already in our pyjamas (or in James’s case his vest and shorts) added a frission of chilly tension to proceedings as we rushed out to the car!

Inevitably, we were low on petrol; I tend to drive on petrol, then fumes, and finally on prayers before filling up, so had to call in to a petrol station on our journey (and yes, I had managed to pull some trousers on before we left the house!)

Sadly, not many of the residents of Bournemouth had got their Christmas lights up early, but we did see some, and the runway lights at Bournemouth International Airport were on, which James always enjoys.  There was a great big, bright moon to look at too!

On returning home, I opened the Celtic Daily Prayer book, as is my practice for evening devotionals currently.  That evenings readings totally blew me away, coming as they did on the back of such a lovely night drive with James.  The first was this from Psalm 104 (verses 19 and 20):

“He made the moon to mark the seasons, and the sun knows when to go down. You bring darkness, it becomes night, and all the beasts of the forest prowl.” (NIV)

We had seen the great big moon that God had made.  God had brought the darkness, it had become night and we had gone out for our nocturnal adventure.  Now, we rarely go on our night drives alone, and are often accompanied by James’ giant Winnie-the-Pooh.  My friend Jane commented that she quite liked the idea that Winnie might be a “beast of the forest that prowls”, and so did I!

James - night drives 2

And then there was this from Isaiah 45 (verse 5):

“I will give you the treasures of darkness, riches stored in secret places.” (NIV)

This totally blew me away… I really sensed the significance of these verses, and of God speaking to me through them, after our night drive.  James and I had found treasure together in the darkness, had found riches stored in secret places.  We had laughed together, enjoyed looking at the lights together, been slightly scared together as we drove through the dark woods (were there beasts of the forest prowling there?)  Most of all, we had found the riches of spending valuable time together, just being “James n Da-ddy!” as James himself said.

Through the tough times of additional needs parenting, of which there are many, through the battles to try to get help from school, social services, health agencies and others, this treasure in the darkness is better than diamonds.  It sustains us, it keeps us going; these wonderful moments, riches stored in secret places, help us and James to have hope.  Hope that there will be a better day tomorrow, hope that James will be willing and able to come out of the house during daylight, hope that we can help him to return to school, to his favourite places.  Hope for more nocturnal adventures, of joyful belly laughs, of amazement as we look at the lights together, of time spent just being “James n Da-ddy!”

For us, our hope is inextricably connected to our unconditional love for James, and our eternal faith in God.  The three come together as a package, and through them we have experienced wonderful things together.  For this is where the treasure in the darkness comes from, this is the secret place where the riches are stored…  As Paul writes in 1 Corinthians 13 verse 13:

“Three things will last forever—faith, hope, and love—and the greatest of these is love.” (NLT)

Amen.

Mark
1st December 2017

Image rights: Authors own

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‘Don’t Worry: God’s Peace In The Storm’

There have been a few times lately when I’ve felt that God has been pulling me up by the bootstraps and telling me that he has everything under control, and that worrying about things isn’t actually a productive or helpful use of my time or energy…

That hasn’t always been an easy message to receive, but this week provided a clear example of how God’s peace, grace and love is given in abundance, and eases our sometimes-troubled hearts and minds.

This week, James reached a hat-trick that we had really hoped he would avoid.  Having been diagnosed aged two with Autism and Learning Disability, he was given a third diagnosis to add to the list aged 15; Epilepsy.

Now this didn’t come as a complete shock; regular readers of this blog will know that a few weeks ago James had a tonic-clonic seizure, the first we are aware of him having https://theadditionalneedsblogfather.wordpress.com/2017/11/02/fits-fear-faith-friends-and-facebook/  Looking back, we remembered a strange report back from school in March this year where James seemed to go blank and stare vacantly into space for about 30-seconds, before snapping out of it and carrying on as normal.  We now know that this was likely to be an absence seizure, another form of epileptic event.  All of this led to the meeting this week with the Paediatric Neurology Consultant at Poole Hospital, who formally added Epilepsy to James’ diagnosis list.

Now it would be remarkable if this didn’t worry us, cause us to be even more concerned about James, how this might affect him, what the future might bring…  But in the storm, we sensed God; his peace was with us, his presence strengthened us, his word spoke to us.

“In this world you will have trouble.  But take heart! I have overcome the world.” John 16:33

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28

That evening, as I was ordering anti-suffocation epilepsy pillows, thinking about different types of room monitors, mentally assessing whether there are any hazards in James bedroom, or his den, worry started to creep up on me again.  But God got there first.

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

I woke in the night… had I heard a noise?  Was James OK?  I lay listening to the quietness of the house and as I berated myself for being over anxious, once again God’s peace was there.  He didn’t berate me, his presence comforted and relaxed me…  He’s got this, it’s in his good hands.

“When my anxious inner thoughts become overwhelming, your comfort encourages me.” Psalm 94:19

Now not worrying is not the same as not caring…  Of course we care greatly for James, we love him dearly and want the very best for him.  But does lying awake at night worrying about his epilepsy make it go away?  Does it help us to help him?  Does it make any positive difference at all?  No…  all it does is make us tired, anxious, stressed, and less able to care effectively for him.  In every way, worry is counterproductive.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear.  Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them.  Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life?” Matthew 6:25-27

“Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.” Matthew 6:34

Not worrying isn’t easy, but if we trust in God to help us, he will.  By seeing him working in us, and through us, we can receive his peace, his comfort, his rest; and that will help us to be much more effective in helping James that any amount of worrying will!  Just like the journey we’ve been on since James was two and received his first diagnoses, God will use our experiences to strengthen us and to equip us to help others this time too…

“Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.” Matthew 11:28-30

“Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.” Proverbs 3:5-6

We choose to act on the key words of the two passages above… “Come…” “Learn…”  “Trust…”  “Submit…”.  And in coming to God, and him coming to meet us, with trust in our hearts, learning from him and submitting to his will, what is there really to worry about?

God bless,

Mark
24th November 2017

Image rights:  Header (ossekeag publishing)

‘Jesus At The Pools Of Siloam, Bethesda, And Our Bath!’

A couple of days ago something extraordinary happened… something totally unexpected… something that in its own way was delightful and wonderful…  James had a bath!  An hour-long soak!

Now granted, expecting any 15-year-old lad to have a bath isn’t a given… but James isn’t any ordinary 15-year-old.  James is autistic, and also has learning disabilities, which means that he sees and responds to the world in different ways to most people.  For several months now, regular readers of my blog will know that James has been pushing his boundaries, continuing to develop his own personality, determining more for himself what he will do or, more commonly, not do.

Washing has been part of this journey for several months now, with James refusing to shower and only grudgingly agreeing to be washed using a bowl of soapy water and a flannel…  Not exactly ideal, and hair washing being particularly difficult!  But on Wednesday, something amazing happened.  Something that reminded me of Jesus’ encounters with people with disabilities by pools of water at Siloam and Bethesda in Jerusalem.

James had just used our downstairs toilet, located in the bathroom, and we were helping him to change out of his day clothes and into his pyjamas.  In a moment of God given inspiration, I turned the taps on the bath and as the warm water flowed suggested to James that he might like to have a bath (James hasn’t had a bath for 8 years, preferring until these recent difficulties to use the upstairs shower).

As bubble bath was added to the water, James watched in fascination as the foam grew.  He reached into the bath and touched the foaming water, a look on his face clearly articulating the anguish he was experiencing…  “I want to get in, but I also don’t want to!”  James lifted a leg tentatively towards the bath, and then put it back down…  He lifted it again, up and over the side of the bath and into the water!  He giggled, and then stepped into the bath and sat down in the warm soapy water.  We were stunned, and it took us a few moments to take in what we were actually seeing!

Not knowing how long James would stay in the water, our initial reaction was to wash everything that moved as quickly and thoroughly as we could.  James’ hair was properly washed for the first time in ages… three times!  But James showed no sign of wanting to get out of the bath, lying happily in the water as we played with the foam, brought in things for him to play with, and as we slowly relaxed into the wonder of it all!  James stayed in the bath for an hour, until we had to pull the plug out and empty the bath of both water and boy before he became any more prune like!

It was a truly miraculous event, a phrase I don’t use lightly, and one that we hope and pray will now become more regular.  Thinking about it afterwards, it reminded me of those encounters that Jesus had with people with disabilities at the pools of Siloam and Bethesda…

The pool of Siloam was constructed under the reign of King Hezekiah around 700BC, as a safe and secure water supply inside Jerusalem’s walls as the city came under siege by the Assyrians (see 2 Chronicles 32).  We’ve felt under attack for a while as James has struggled in so many ways, and yet James has felt safe and secure at home… a wonderful answer to prayer.  We are hoping this feeling will continue to extend to the bath!

Pool of Siloam

In John 9:1-12, Jesus heals a man who was born blind…  Part of the way this happened was that he sent the man to wash in the pool of Siloam (see v5), and afterwards the man came home seeing.  As James washed in our bath, we saw things differently…  we saw into his world just a little more clearly as he happily soaked in a safe place for him, a place where he could just be himself.  We “came home seeing” better as a result of what God revealed to us and what James taught us in that moment.

The pool of Bethesda was located just outside of the city gates, and John 5:1-9a tells us that many disabled people would lie by it as they believed that an angel would sometimes stir the waters and that the first one to then enter the pool would be healed.  Jesus arrived and healed a disabled man who had been there for 38 years.

Pool of Bethesda

As we sat by the bath watching James thoroughly enjoying the warm soapy water, we stirred the water for him.  Now we are far from angels, and there was nothing miraculous about the water, but as we delighted in that very special hour with James we felt Jesus ministering to us, healing our souls from some of the anxiety and stress that being parents of a disabled child brings.  One of the meanings of the name Bethesda is ‘mercy’ or ‘grace’, and we experienced this in abundance during this beautiful hour with James!

We don’t yet know if this special experience will just be a one-off, or if bath-time will return to the Arnold household as a regular, delightful, happy time together.  We pray it will, but whatever the future holds we will always cherish this special, precious moment!

Now, where did I put those bath bombs?! J

Mark
17th November 2017

Image rights:  Header (unknown), Pool of Siloam (Yoav Dothan, Public Domain), Pool of Bethesda (Robert Bateman 1877, Public Domain)

Dealing With The Yukky Stuff; Loving, Living And Serving Like Jesus

As I headed upstairs to get James up this morning, I heard him giggling…  Normally, this is a sound that thrills my heart, but I know James all too well and at 07:30 in the morning it is rare to get so much as a grunt out of James….  Giggling meant trouble; my heart sank…

Sure enough, as I entered James’ room, an all too familiar scene greeted me (and my senses!)… James occasionally, overnight while he is relaxed and sleeping, does a ‘Number 2’.  The good news is that he still wears a pad at night, the bad news is that if he wakes up early, he will start to play…  Whoever discovers him in the morning will usually shout for help with the words “Brown alert!”

This morning, as I was once again cleaning James, his bed, his room, you surely can’t blame me for sighing (not too deeply… the smell!!) and wondering what other dads were doing at that time…  Maybe enjoying their breakfast, or chatting with their family about what they all had planned for the day.  Maybe watching the latest news over a cup of tea or coffee before heading out for the day.  Not many would be clearing up poo…

My sigh didn’t last long though, certainly not as long as the unmistakable aroma that is still permeating every corner of the house at the moment despite having all the windows open!  I was reminded of the new values that we are adopting at my home church in Bournemouth, to ‘Love like Jesus; Live like Jesus; Lead to Jesus’…  Great values that are already proving to be helpful and inspiring at church, but which in a similar way have inspired my thinking this morning…

Thinking about how Jesus loved, lived, led (and served)…  As I think of this more in the context of being Dad to James, dealing with the ‘yukky stuff’ that is the inevitable consequence of additional needs parenting, I can hear Jesus whispering to me… “I’ve done this, you can do it too…”

Think about some of the people that Jesus met; not just spending time with them but touching them, having physical contact with them.  Not put off at all by the ‘yukky stuff’, his love being much greater than all of that.  In many cases, culturally at the time, this was extraordinary; take for example the man with leprosy in Luke 5:12-14, someone who would have been seen as unclean and to be avoided at all costs by people at the time.  Read v13, “Jesus reached out his hand and touched the man. ‘I am willing’ he said, ‘Be clean!’ And immediately the leprosy left him.”  Jesus reached out his hand, and touched a leper…

In John 10:38-44 we see Jesus bringing Lazarus back to life…  In v39 he asks for the stone over the tomb to be taken away, and is warned that after four days the smell will be bad.  Not put off by a smell far worse than the one that greeted me this morning, Jesus persists, raises Lazarus, and restores him to his family.

Mark 1:30-31 tells us the story of how Jesus visited the mother-in-law of Simon (Peter), who was suffering with a fever.  Again, he touched her, sick though she was, and as he helped her up the fever left her.  Jesus was not put off at all by the possibility of catching a contagious fever that could prove fatal, his love was greater.

The Gospels are filled with Jesus loving people and helping them despite the ‘yukky stuff’…  Of the 37 recorded miracles in the Gospels, 25 of them involve Jesus engaging with people who were sick, infirm, or disabled, and counter-cultural though this was for the time, their illness, infirmity or disability didn’t put him off at all.  Now whether you believe in Jesus as the Son of God come to earth or not (I do), there is little doubt that how he lived, how he loved, how he led (by serving) those around him, was and still is inspirational.

As I finished cleaning James, his bed, and his room up this morning, I felt just a little closer to Jesus through the experience…  My love for James is unconditional, it isn’t affected at all by what he does; neither is Jesus’ love for me.  Living in a way that serves James, my family, my friends and others is living like Jesus wants me to live.  He knows that I very often get things badly wrong and mess up massively, but he graciously and lovingly reaches out and cleans up the ‘yukky stuff’, the mess I’ve made of things, and keeps loving me no matter how many times I keep getting it wrong.  That’s a role model I am inspired to follow!  It’s a lifestyle that brings joy, fulfillment, satisfaction and love.

For each of us, we face a choice… what kind of life do we want?  Do we want the ‘It’s all about me!’, ‘Because you’re worth it!’ self-centred, self-obsessed, self-serving life that is shoved at us all the time through wall-to-wall advertising?  Shallow, worthless, unfulfilling and empty though it is?  Or do we want to love, live and serve like Jesus, rolling our sleeves up sometimes to deal with the yukky stuff in our lives and in the lives of others, but knowing that through it all we are living a life that makes a difference, that is inspiring, that is deeply fulfilling?

I know what my choice is… now, where are those wet-wipes again?!

 Blessings,

Mark
10th November 2017

Image rights: Authors own

 

‘Fits, Fear, Faith, Friends, and Facebook’

Last week James, our 15-year-old Autistic son, had a fit;  a full tonic clonic grand mal seizure, something he’s never had before.  It is right up there with the most scary, frightening things I have ever experienced in my life (James knew very little about it himself, thank God)…  Even writing about it now brings goosebumps back as I remember what happened…

James had had a bit of a disturbed night, and so had been late getting up.  It was about 10am and he had come downstairs; I had just helped him get washed and dressed, and had taken his pyjamas out to the kitchen to the washing machine.  When I returned moments later, James was fitting…  he was rigidly stiff, having rapid muscle spasms, and losing consciousness.  Although it only lasted a couple of minutes I think we lived two lifetimes in that time…

In some ways we went into autopilot as our response to this crisis… Clare stayed with James and made sure he was safe from further harm while I grabbed the ‘phone and called for an ambulance.  Having someone calm on the other end of the ‘phone, asking relevant questions, taking important details, giving us things to do, continually reassuring us that help was on the way, all helped massively.

As the call ended, and with James’ fit having stopped, we awaited the ambulance, who arrived about five minutes later…  Five minutes during which I remembered that there is someone else who brings calm in a crisis, offers reassurance and a presence that is so important in a storm, Jesus Christ.  We prayed, for God’s presence, for peace in the storm, and for James that he would recover fully and be fine.  Not for the first time, the words to my favourite worship song were a comfort and inspiration to me…  “Christ alone, Cornerstone, weak made strong in the Saviours’ love.  Through the storm, He is Lord, Lord of all…”

The paramedics arrived, James was assessed as being out of danger, plans started to form for arranging for him to get some tests (regular readers of my blog will know that James is currently unable to leave the house during the day, so going to A&E at that time was not possible).  Once the paramedics had left, with James weak from the experience, sleeping through the day, we knew God’s presence with us, his peace and comfort, he was with us in the storm and was Lord over all…

Facebook

We posted details of what had happened on Facebook, asking our friends to pray for James if they were the praying sort, or to think positive thoughts about him otherwise…  The response overwhelmed us as so many people held us, and especially James, up in prayer and thoughts.  So many wonderful messages of support and offers of help; so much encouragement and kindness…  I couldn’t possibly include them all, but here is just a selection:

“Oh, God, we cry out to You on behalf of James and his entire family. Comfort them as only You can, and make a smooth path for them in dealing with this frightening situation.”

 “Stay strong mate, know God is holding you all as a family and lean on his love and care – praying for you all.”

 “Praying peace for the entire Arnold household. May the hand of God be upon you all right now with favour, restoration and health.”

Facebook, and social media generally, can often get a bad press.  It is sometimes used in hurtful and damaging ways, but it can be, and often is as in our case last week, a wonderful way of people standing together with those who need their friends…  I can’t begin to adequately express the gratitude we have to the 70+ people who responded, and the many more who also stood with us in prayer and thoughts.

As we look at James today, laughing and full of mischief, eating like a horse and seeming to grow taller by the day, it seems another lifetime ago that he was unconscious, unresponsive, breathing shallowly…  Further tests will perhaps help us to know if this is something that might happen again, or if it was just an unexplained one-off, but whatever the future holds we can face it with confidence knowing that our God is greater and is with us, as are our amazing and wonderful friends from across the world who are ready and willing to stand with us in the storm.

Situations like this, frightening though they are, develop our faith and closeness to God and help us to value our friendships all the more… and to be grateful for social media that can bring those friends together!

 “Even though I walk through the darkest valley, I will not be afraid.  You are with me.  Your shepherd’s rod and staff comfort me.”  Psalm 23:4 (NIrV)

“Job had three friends named Eliphaz the Temanite, Bildad the Shuhite, and Zophar the Naamathite. They heard about all the troubles that had come to Job.  So they started out from their homes.  They had agreed to meet together.  They wanted to go and show their concern for Job.  They wanted to comfort him.”  Job 2:11 (NIrV)

Who might you and I show concern for and comfort today?

 Blessings,

Mark
2nd November 2017

Image rights: Crosscards (header),  Facebook Inc. (Facebook image)

 

 

‘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

‘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!

IMG_2274

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

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

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

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

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

jesus-washing-the-feet

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

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

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

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

Mark
27th September 2017

Image rights: Authors own and James Pruch

‘The Additional Needs Battle’

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

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

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

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

DI4OLIXXgAARiUe

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

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

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

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

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

thathemaysee

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

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

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

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

Mark
10th September 2017

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

‘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)