Additional Needs Parenting: Unpredictable, Impactful, Inspirational

Those of you who have read other blog posts of mine on Firefly will know that James, our 16-year-old Autistic son, is currently finding it hard to leave the house, with all the disruption that causes around school, work, socialising etc…  Things remain quite unpredictable, but the journey, while impactful, continues to be deeply inspiring!

James not going into school means that one of us needs to stay at home with him as he is unsafe to be left alone.

Juggling work and home commitments is proving challenging, as we find ourselves living out the old Chinese curse quoted by President John F. Kennedy over 50 years ago; “May you live in interesting times”! (Never thought I’d be quoting Kennedy in a blog!)

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’ 16 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 a blog either!), 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, meaning to be grateful, to feel thankful, to give thanks…  even in the storms of life.

I’ve just completed my own journey of chronicling one thousand gifts; and as I look back over some of what I have written over the past few difficult days, weeks and months, 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!”, “An easy transition to bed” …. and so on…

Through the impactful disruption of the last few months 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 ever 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!”

We do not journey alone, but with family and friends whose love and presence supports us; maybe you also have a faith, I know mine has sustained me through many storms…

We journey through the unpredictability, impact, and yes, the inspiration, never alone but always with those who care for us; with them joining us at the helm, helping us to navigate the way, or maybe just keeping the engine going!

So, if, like us, you are journeying through unpredictable, difficult, challenging, impactful or disruptive times as an additional needs parent, seek out the inspiration, seek out the things to give thanks for… eucharisteoand find joy, peace, inspiration and a drawing closer both to your child and to those who care for you, through them.

Mark

2nd August 2018

Image rights:  Mark Arnold (photo of James)

‘Lost Voice Guy’, wins Britain’s Got Talent!

WHAT’S THE STORY?

On Saturday 2nd June 2018, Lee Ridley, who performs as the comedian ‘Lost Voice Guy’, won the 2018 series of ITV’s Britain’s Got Talent.

His win was remarkable for a number of reasons, including that he is the first comedian to do so, but also because he has Cerebral Palsy, a group of lifelong conditions developing early in life that affect movement and co-ordination, a result of which left Lee Ridley unable to speak and using a machine called a Lightwriter to speak for him.

Here is ‘Lost Voice Guy’ in action!

The runner-up in this year’s Britain’s Got Talent, Robert White who is also a comedian, identifies as having Asperger Syndrome (a neurodiversity that is part of Autism).

Both performers made light of their own disabilities or additional needs during their acts, referencing their conditions and people’s reaction to them as part of their comedy routine.

The audience ratings for the final were the highest since 2015, with an average of 8.7 million viewers tuning in to watch the show.

Is the fact that the winner and runner-up of this popular TV show both have disabilities or additional needs significant?

Is this a game changer for disability in the media?

‘Lost Voice Guy’ with the host of ITV’s ‘Britain’s Got Talent’, Declan (Dec) Donnelly, at the moment that he is announced as the 2018 series winner.

WHAT’S THE BACKGROUND?

It is still rare to see positive portrayals of disabled people on television, particularly on talent shows like Britain’s Got Talent.

Looking back through the TV archives, it is more common to see disabled people being used as the butt of jokes or hate speech in ways that would be considered completely unacceptable if they were being picked on for their race, gender, sexual orientation, etc.

In the 1990’s ‘Little Britain’ which starred current Britain’s Got Talent judge David Walliams, also featured Matt Lucas as a disabled character who was secretly able bodied, attempting to suggest that some disabled people fake their conditions in order to claim welfare benefits.

It was a hugely popular show of is time and is regularly re-run.

The Channel 4 TV comedy show ‘The Last Leg’, currently in its 13th series, features characters played by disabled people, who use their disabilities to comic effect.

‘Lost Voice Guy’ describes himself on his website as follows: “Lost Voice Guy’s real name is Lee Ridley.

That’s me! I am a writer, journalist, comedian and geek who is based in Newcastle Upon Tyne, England.

I also have Cerebral Palsy. I have no speech (I use a small machine called a Lightwriter to speak) and I walk with a limp.

Don’t worry though, you can’t catch it from me.

It just means that you better not get stuck behind me on the stairs if there’s a fire.”

He continues by outlining his varied career to date, his academic qualifications (Masters and undergraduate degrees in journalism), his wide range of hobbies etc.

You can see his website here.

Other disabled people regularly seen on television include Frank Gardner, who is a journalist and the BBC’s Security Correspondent.

Gardner was disabled in 2004 when shot six times by terrorists; his friend and cameraman was killed.

He is regularly seen providing specialist security commentary on BBC news programmes.

Former CBeebies presenter Cerrie Burnell who was born missing the lower section of her right arm and hand, left the channel last year after eight years during which she was regularly subjected to hurtful comments by parents who said that her disability scared their children.

One man said that he would stop his daughter from watching the BBC children’s channel because Burnell would give his child nightmares.

Parents even called the broadcaster to complain after Burnell, with Alex Winters, took over the channel’s popular Do and Discover slot and The Bedtime Hour programme, to complain about her disability.

More recently, Lucy Martin, who was also born without her right forearm and hand, became the first visibly disabled BBC weather presenter.

Her experience has been more positive, as while she has also had some unpleasant comments, the feedback generally has been overwhelmingly supportive.

The increase in media channels and self-broadcast channels such as YouTube has also led to many more disabled people using these to reach an audience, allowing them to showcase themselves in the way they want to, rather than how a broadcaster might portray them.

WHAT ARE THE ISSUES?

EQUALITY

If programmes such as ‘Little Britain’ made fun of people because they were black, or female, or transgender, then the backlash would be enormous.

It is rightly regarded as off limits on mainstream prime time television to belittle people due to their race, gender, sexual orientation etc. however this doesn’t seem to apply in the same way to disability.

Disabled people are routinely ridiculed, abused and attacked, with little or no protection seemingly provided.

Question:  Is there is a ‘pecking order’ for equality?  If you had to rank e.g. race, age, religion/beliefs, gender, sexual orientation, disability, etc. how would it look, and why?

Question:  Do you feel that strong advocacy from campaign groups such as Stonewall, as well as social media campaigns such as #MeToo and #TimesUp, might have influenced this?  How?

ATTITUDES

It has been suggested that the success of ‘Lost Voice Guy’ shows a shifting of public opinion regarding disabled people.

Excellent attendance figures for the Paralympic Games as well as the Invictus Games have shown that there is an appetite for disabled sport, and so it is possible that these changing attitudes could be extending into other areas of life such as television and the wider media.

Question:  Does the recent success of ‘Lost Voice Guy’/Lee Ridley and Robert White change things for the better by raising awareness?

Or were the public watching and voting for them in some modern parody of the ‘Freak Shows’ of the Victorian era?

Question:  Does seeing more disabled people on television, especially successful people and not just ‘victims’, make it less likely that the kinds of cruel comments Cerrie Burnell was subjected to will be repeated?  Why?

NORMALISING

With one in five of the population of the UK having some kind of additional need or disability, including over 11 million described as disabled under the Equalities Act 2010, disability isn’t a rarity that is hardly ever seen.

Everyone knows people with disabilities, many of us have disabilities ourselves.

There seems, however, to be a disconnect between what we see and experience in the ‘real world’ and what we see on the carefully curated environment of television.

It is unlikely that a disabled person is going to be selected as a contestant for ‘Love Island’ anytime soon for example.

Seeing disabled contestants on Britain’s Got Talent could be seen as a positive move, but we won’t have fully succeeded in normalising disability until every role is available to anyone.

When we have a disabled Dr. Who, a disabled Sherlock, a disabled host of Britain’s Got Talent or Top Gear, and a disabled presenter of Blue Planet III then we might be getting somewhere.

Question:  Is this goal achievable?  Are there any roles on television, for example, that you could never see being available to disabled people?  Why?

To conclude then, while ‘Lost Voice Guy’s victory in Britain’s Got Talent might be a significant step forward for disabled people of all ages in the UK, the jury is out as to whether this is a watershed moment, a game changer.

It certainly isn’t a ‘Golden Buzzer’ that creates a level playing field for everyone, but it might have played an important part in raising awareness and creating some positive change in society at large.

Let’s hope there is more to come!

 

OTHER LINKS:

Lost Voice Guy’s website.

Britain’s Got Talent YouTube channel.

Useful BBC article.

For more information about Cerebral Palsy.

The Additional Needs Blogfather’s blog site.

Autistic Pride Day – Because He’s Worth It!

Advertising and marketing media is filled with slogans such as, ‘Because you’re worth it!’, ‘It’s all about you!’, and, recently, that dreadful advert from TUI (formerly Thomson Holidays), where an entourage of lackeys serve the every whim of the main character, ‘Putting you at the centre!’

So, what does any of this have to do with a blog post about children with additional needs on Autistic Pride Day?

Well, parenting is life changing, it alters everything; the focus of our lives becomes less about ourselves and more about the child we’ve brought into the world.

This is generally (although, sadly, not always) true for all children, but it increases even more for a child with additional needs or disabilities.

The level of care required, the sacrifices that need to be made, the time that needs to be invested, and so much more all increase exponentially.

James is 16, however his additional needs require a level of care that would be typical for a three-year-old.

He cannot be left unsupervised, has no real sense of danger, has a high level of personal care requirements, and there is a great deal of juggling that needs to happen just to get through each day.

In this world, the self-centred self-obsessed advertising and marketing slogans are just irritating white noise; an irrelevance in a situation where they cannot have any place in our lives.

Our focus simply cannot be on ourselves, it is impossible.

It has to be on both of our children, but particularly James as his needs are so much greater, however we wouldn’t have it any other way.

There are many challenges that we have faced in recent times with James.

Him not being willing to leave the house, especially in the day and particularly not to school.

His recent diagnosis of epilepsy to add to autism and learning disability.

Things are hard and yet through it all, through all the difficulties and the self-sacrifice, there is the overwhelming natural desire to meet James’ needs, to give him unconditional love, to be there for him, with him, through it all, and to take pride in each and every achievement he makes.

And every now and then, we get a wonderful treat!

A few evenings ago, James was sat with us when he was suddenly filled with joy, a huge smile spread across his face, and he excitedly said “Appy!! Appy!!”.

For this almost non-verbal boy this was a wonderful expression of how he was feeling in that moment, and it had us in bits for the rest of the evening!!

We were, and are, incredibly proud of him.

Proud that he is able to cope with it all, to face much bigger challenges than we will ever face, and to still be able to experience overwhelming joy in the midst of it all!

All of the sleepless worry-filled nights, all of the challenges and difficulties we face together, all of the hospital appointments, all of the sacrifices that need to be made, all of the times when we can’t do something or go somewhere, even all of the times when we are cleaning up things that we would rather not, all of it melts away when times like this come.

We change the marketing slogan to meet our context, “Because it’s all worth it!”, “Because he’s worth it!”

Worth it because we love him, worth it because he tries so hard and we are so totally and overwhelmingly proud of him for each tiny little step he takes, every little sign of progress, each word he is somehow able to convince his voice to say.

What about you?

Where do you see yourself in this?

Maybe you are a parent or carer of a child with additional needs and ‘get it’ as you are on the same journey?

Or maybe you are a children’s or youth worker, or in education, and get to support a child or young person with additional needs when they are in your session or class?

Whatever your context, the counter-cultural message shines through… put others before yourself, love others, be self-sacrificing, serve others, especially these amazing kids that we have the privilege of journeying with, that give us so much to be so very proud of.

So, let’s continue to be counter-cultural, revolutionary, rejecting the narcissistic, selfish, self-obsessed, self-serving culture that society would have us embrace.

By putting our kids first, being proud of all the little things they do, we can be better people, be the people we should be, to love and serve the children we care for, whether they are our own or not.

Let’s show them how proud we are of them today.

Men’s Health Week – Special Needs Dads Need Support

The stresses and strains of parenting a child with additional needs are 24/7 all year every year and added to the anxiety and even guilt that many parents will experience it can all add up.

It can make it more likely that families where there is a child with additional/special needs or disabilities will fall apart under the pressure, with 53% of families claim that having a disabled child causes some/major relationship difficulties or breakups (source: About Families)[1].

What are the triggers for this, and how does it affect Dads in particular, including their emotional, mental and physical wellbeing?

Pre-diagnosis – worry

In the early stages there is the trigger for relationship breakdown as we are struggling with understanding what is going on with our child.  Is there something wrong?

Are we just being paranoid?  What’s wrong?  Is it serious?  How do we find out?  Who do we ask?  Do we want to find out?  Secretly, are we avoiding this?

This period of intense uncertainty can be really difficult relationally, perhaps opening up cracks that were already there, perhaps opening up new ones as so much focus is on our child and not on each other.

Guys are not great at talking about their feelings but struggling with our feelings alone is not the answer.

Diagnosis – shock

Then we get a diagnosis for our child.  In some ways it is a relief as at last we know what we are dealing with, but then a whole bunch of new questions come to us.

What does this mean?  We don’t understand… how did this happen?  Was this our fault… blame… did we do something wrong?  Why did this happen?  Why us?  Why not somebody else?

Suddenly we are faced with the loss of the future plans we had for our child, for our family, for ourselves… it all lies in tatters.  It can be devastating, we grieve for what is lost… and can turn on each other.

It can be a time of huge emotional, mental and even physical turmoil for everyone, including Dads, who can really benefit from being able to talk to someone.

Care for the Family have their excellent befriender service which matches families up with people who can chat with them who have experienced similar situations themselves.

‘Take 5 and Chat’ offer another way of linking families that are on the same journey and bringing them together for mutual support (and cake!)

Parents of children with additional/special needs often feel excluded from a wide range of social activities (source: Mumsnet)[2]  and so accessing services like this can be health, life, and relationship saving!

Care for the Family befriender service

Take 5 and Chat

Five stages of grief:

Most families that include a child with additional needs or disability will go through the five stages of grief, often many times.

This is a natural response to some big life changes, but it can be overwhelming for many families, including Dads, and a real trigger for relationship breakups.

  1. Denial/isolation – overwhelming emotions, the inability to control them, fight or flight instinct kicks in… denial of the situation, blocking it out, hiding from it and hoping it just goes away.

It’s not unusual for families to split apart at this point.

2. Anger – reality, and the pain of the diagnosis, breaking through our denial.  It can burn deep and cause us to lash out at those trying to help us.

It can be terribly destructive and can and does cause relationships to fail.

3. Bargaining – “If only we had…” trying to rationalize it, trying to regain some control of the helplessness and vulnerability we feel.

If we have a faith we might try doing a deal with God “If you make this go away I’ll…” trying anything to protect ourselves from the painful reality.

4. Depression – sadness and regret about the lost dreams, a deep sense of mourning for what is lost… coupled with a gradual and profound realisation that this isn’t going away.

Couples can easily drift apart here as they become immersed in their own feelings.

5. Acceptance – not a gift received by everyone.  It’s not about being brave, but a gradual sense of understanding of the emotions that we are going through, of the changes that the diagnosis will bring for us, for our child, for the rest of our family, and a growing desire to move forward and make the best of things.

Things will be different, but they can still be OK.  We are ready to embrace not what might have been, but what is.

There is a great story called ‘Welcome to Holland’ told by Emily Perl Kingsley that helps us to understand this cycle of grief, identify where we are in it, and to see that there is hope.

Dads should seek help and support as their family is going through this cycle, participating in counselling and pastoral support, as fighting it off or bottling it all up just doesn’t work and will adversely affect our health and relationships.

As guys we try to fix things… we can’t fix this alone, we need to get support and help if we’re going to help ourselves, our partner, and our kids.

Getting Dads together to share their experiences and stories, to help each other to know that they are not alone, not the only ones dealing with stuff, is really helpful.

Statistically, if a family with a child with additional needs or disability splits up, it’s almost always Dad that leaves.  Talking saves relationships, saves our health, helps our family, and helps us.

Let’s be better at accepting that we are struggling emotionally, mentally, and physically with our situation, and seek the help that we, and our family, desperately need.

See also:  ‘Additional Needs Parents; Disrupted, Resilient, Vulnerable, Broken, Loving’

[1] ‘Together and apart: supporting families through change’ (2011)
[2] ‘Mumsnet parents: negative attitudes are holding back our disabled children’ (2014) 

International Day of Families – Who is in Your Family?

They give us the opportunity to think about good things that have happened, and to remember them with the people that are closest to us.

Big family occasions are an important part of that, whether it’s wedding, a baby’s christening, a great big picnic in the park, or the annual Christmas get together, they can all be great times.

As we celebrate the ‘International Day of Families’, we might think of our family, or of the families of people we know… Families that come in all shapes and sizes, big families, small families.

We might remember some good times we’ve had with our families, and we might remember some difficult times too.

But our families can be more than just the people we are related to by birth, long-term relationships, adoption, etc.

Sometimes there are people who feel like family, who we treat like family, who have no traditional relationship to us at all.

This can especially be the case for those of us that have children with additional needs or disabilities, where there are some key people in our lives that can be very much our ‘family’.

Who is in yours?

In ours we have the friends that just ‘get it’…  People who we don’t need to explain things to, people that we can totally rely on, people who will listen to us when it’s tough, and will roll their sleeves up to help us out even when it’s at the worst possible time for them.  Do you have friends like that?  They can be invaluable!

Then we have the folk who support us and are carers for our son, James (aged 15, Autistic, with Learning Disability and Epilepsy).

People who love him enough to care for him in every way, including the ‘yucky stuff’ and keep on smiling.

People who will sit with him, help him know what is going on and what is happening next so that he can prepare for it.

People that will help him bathe, help him to bed, and will treat him as their own.

When we take James to church, there are friends there that care for him too, people who gladly give of their time to support James, help him to really belong, ensuring that he has the very best time there possible.

And there are the professionals, the people who engage with James to help him learn, who help him with his anxiety, to support him in many, many ways.

When we think about all of these people, people who we really couldn’t do without, people who we are in contact with all the time… these people are an extended family to us.

The relationships we have with them are just as precious, just as meaningful, just as loving as they would be with a cousin or an aunt or even a grandparent.

We all, as parents of children with additional needs or disabilities, have extended families like this.

Extended families that help us to survive, to function, sometimes even to thrive!

So, as we think about the International Day of Families, let’s celebrate not just our immediate family, whatever size and shape that might be, and celebrate our wonderful extended families too!

I don’t know about you, but sometimes I can be guilty of taking our extended family for granted, so on this special day let’s make sure we thank them, celebrate them, and show them how much they mean to us… they are our ‘family’ after all!

The Human Swiss Army Knife

Over all of those years I’ve used it a lot, or rather I’ve used most of it a lot…

When I was looking at it a few days ago, something struck me, made me stop and think.

There’s a tool on the Swiss Army knife that I hadn’t used so much, in fact I wasn’t even sure what it was for.

The thing next to the corkscrew, with an odd blade, a sharp point, and a hole in the middle.

So, I asked some people I knew… some thought it was for taking stones out of horses’ hooves, or for trimming or cleaning nails, or even a scribe to score paper or card.

And, as I thought about this some more, I realised that the Swiss Army knife, and the particular tool I was looking at, makes a great metaphor for many of us who, as parents, or even as children’s workers, care passionately about children or young people with additional needs or disabilities.

We all need to have a toolkit of things available to us to help everyone we are caring for; we need to be versatile and agile, we need to multi-task, and we all have that one thing that nobody else understands, nobody else knows how to do, and that we get instinctively and can do just naturally.

A Swiss Army knife, being a knife, has to have a blade.

Often in the additional needs world, we need to be able to cut through the red tape, to slice through the bureaucracy, to get the support, provision or funding that our child needs.

Then there is the saw.

Sometimes it feels like overnight a thicket of barriers has grown around us, making it hard to get anywhere, to do anything.  The answer is always “no”, always “you don’t meet the criteria” (which constantly change).   We have to continually work to open up a way through these barriers, never giving up, always holding on to hope.

I’m sure that I’m not the only one who sometimes wonders if they have a screw loose as they keep on struggling to make a difference for their child and others.  But all of these children are worth it; they need us to have a screwdriver in our toolkit to keep ourselves together and on-track.

It’s not unusual for us to have to open up things that others would rather we didn’t, as we use our can opener to open yet another can of worms with school, social services, medical professionals or others!

And some days, when it’s all been really rough, we might well need to reach for that corkscrew as we look forward to just a few snatched moments of relaxation with a nice glass of wine!

But what about that mystery tool?

The one that nobody seems to be able to identify?

Well, it’s nothing to do with horses’ hooves, it isn’t for our nails either, and it’s in rather a difficult position to use as a scribe.  It’s an awl or punch, a tool for making a hole in leather or canvas.  The hole in the awl is for passing thread through if being used to carry out a repair on a tent.

Makes perfect sense when you know doesn’t it?

So, with many of the Swiss Army knife tool metaphors being common among us, I leave you with this question…  What does the awl mean for you?

What is it that you know that others don’t?

What can you do that others can’t?

What are the gifts, skills and talents that you have?

And how can you change things so that, unlike the Swiss Army knife awl, people know what you are brilliant at, recognise you for it, and so you get to do it more and more!

Teacher’s Day – Being An Additional Needs Teacher AND Parent

In particular, for those of us whose children have additional needs or disabilities, the care and support that our children receive at school is hugely appreciated and makes a world of difference to us and our children.

We see the team that work with our child, we get to know a little about them and their lives; the pressures they are under, the challenges they face.

There aren’t many school teaching staff who can go home at the end of the day and switch off completely.

My wife, Clare, works as a Teaching Assistant at a local primary school.  She supports a couple of children who have some additional needs, ensuring that they are well supported and cared for, that they are able to learn, and that they get the most out of their time at school.

She then returns home to care for our own additional needs child who is Autistic, has Learning Disability, and has Epilepsy.

Like many teaching staff in similar positions, Clare’s roles at school and at home overlap; complementing each other but complicating each other too!

On the plus side, Clare brings huge experience of caring for a child with complex and developing additional needs at home into the school environment, where that experience can be a huge help to the rest of the teaching team as well as the children she supports and their families.

Some of what Clare learns and the experience that she gains at school can be helpful at home too!

One the negative side, caring for children with additional needs at school, as well as at home, means that there is no break, no respite from high intensity care.

No opportunity to unwind after a stressful, sometime really challenging day at school.

24/7 caring can be and is sometimes draining, but Clare keeps going and does her very best both for the children at school and our own additional needs child at home, while also not forgetting our other child.

When there has been a school holiday, or perhaps even a long weekend like the one just gone, the staff room will be full of stories of staff who have been away for exotic trips somewhere, or have enjoyed a spa weekend.

Clare has no stories like that… her stories are of continuing to care for and clean up after our disabled child; sometimes returning to school exhausted after a school holiday rather than refreshed.

Why does she do it?

Because she knows from our own experience how valuable the support given at school to children with additional needs or disabilities, and their families, can be.

We’ve benefitted greatly from the care and support given to our own son over the years.

Clare can give a little back, and so does so to help those families, like ours, that need it most.

So, this Teacher’s Day (and please, let’s extend that to ALL teaching staff and volunteers), let’s celebrate the many caring individuals who do so much to support and nurture our children.

Let’s show them the support, respect, and appreciation that they deserve.

And if one day the member of the school teaching staff that we’re seeing or talking to looks a little frazzled, think about what, or who, they might have left at home to come and care for our children; you might just be talking to someone like Clare.

Happy Teacher’s (and teaching staff and volunteers) Day!

Swept Away, But Saved!

The day had started uneventfully, but as it wore on and warmed up my cocker spaniel, Ella, was increasingly desperate for a walk to the nearby river.

She loves a swim, and so I eventually stopped working and off we went.

As we reached the river we stopped at a section that has a shingle beach about 50-60m long, and I tossed a stick into the river for Ella to fetch.

She willingly swam out to it, collected it and brought it back, dropping it expectantly at my feet.

We repeated this simple pleasure several times, until I saw a mum and her three-year-old boy, Freddie, arrive at the other end of the beach.

Mum settled on a bench while Freddie paddled in the river, happily clutching his little fishing net, busily chasing minnows…

As Freddie tried to catch the little fish, he moved deeper into the water and progressed further along in my direction.

“Freddie, don’t go out too deep, stay nearer the beach”, mum shouted, but Freddie was having too much fun and didn’t hear her; he edged out into the river up to his waist, and further along the river towards where I was throwing the stick for Ella.

“Freddie, you’re in too deep, come in closer to the beach” cried mum, but Freddie wasn’t listening, he was enjoying chasing fish and was now up to his chest in water.

He was about half-way between where his mum was sitting and where I was stood.

I know this river very well, I’ve lived near it all my life, and I know that is slowly shelves out and then suddenly drops into a deep, fast flowing channel.

Seeing Freddie’s progress, I took off my shoes, took my ‘phone, keys and wallet out of my pockets, and paddled into the river.

“Freddie, you’re out too far, come in now!” shouted mum from the bench.

Freddie was most of the way along to where I was, but was now up to his neck in the river!

Laughing in delight, he took one more step back and disappeared under the water.

I knew it was no good going to where he had vanished, the river runs fast in the channel he had fallen into, so I raced straight out to where I thought I could catch him.

As I reached the middle of the river, chest deep myself, I looked down and deep under the water saw a glimpse of a brightly coloured tee-shirt being pulled by.

Plunging down I grabbed a handful of tee-shirt and pulled Freddie up and out of the deep.

There was one chance to save him, and to this day I believe God put me there for that purpose that day.

I notice things, I have knowledge of the river, I am a strong swimmer.

As I threw the coughing, spluttering, and rather shocked Freddie over my shoulder and started back towards the shore, I noticed that mum, finally, had left the bench and was screaming “Freddie! Freddie!” as she ran along the beach.

She met me as Freddie and I arrived at the shore, snatching him up and hurrying him away, blaming him for not listening to her.

As I stood on the beach, somewhat stunned, and the magnitude of what had just happened began to sink in, my spaniel, Ella wandered up, dropped a stick by my feet, and looked at me hopefully…

So, what does any of this have to do with caring for and working with children or young people with additional needs?

Well, I wonder if each of the characters involved in this story can be recognisable in the context of what we do…

Freddie:

Representing many of us, doing the work we do as parents or as children’s/youth workers, enjoying what we do but often being ill equipped to realise the difficulties that we may be getting into; unaware that we might be getting out of our depth, oblivious to the challenges to come.

Mum:

Representing those who shout from the sidelines, but do nothing constructive to help.  They may offer opinions or even tell us what we are doing wrong, but do nothing positive.

If everything does go wrong, they may be the first ones to blame us, and say “I told you so…”

Me:

Representing someone who is a bit further along the road than us, someone who knows more than we currently do and is willing to use or offer that knowledge and experience to help us, maybe even to save us when things all go so badly that we are being swept along by circumstances out of our control.

Someone who is willing to dive in, get involved, struggle for us and put our feet back on safe ground.

Ella:

Representing someone who brings normality back to our lives.  When everything seems to be unravelling, they are just there for us, grounding us, maybe even bringing us something unexpected.

We might initially recognise ourselves in one of these characters and we might recognise other people in other characters too…  but perhaps there is a little of each character in all of us…

We can all have a little of “Freddie” in us, unaware of our weaknesses, our vulnerabilities; ill equipped and ill prepared to face some of the challenges that lie ahead…

Realising this in ourselves is important if we are to receive the help of others.

Perhaps we all have a little of “Mum” in us too, sometimes being critical of others without offering any constructive help…

Let’s minimise this trait in ourselves, for surely we can all be guilty of it at some point.

Hopefully we can all have a little of “Me” in us, being willing to seek out and help those a little further behind us on the journey, offering the knowledge and experience we’ve gained to benefit others.

Let’s all try to do this more, to do all we can to help each other.

And it would be great if there was a little of “Ella” in all of us too.

Bringing normality to others, maybe just ‘being there’, maybe bringing something unexpected.

We do not journey alone…  we have each other to share the journey with, to encourage and support each other; to use our experience and knowledge for the benefit of us all, to be there for each other.

So, let’s all journey on together shall we?

Anybody got a stick?

Stress Awareness and Support for Special Needs Families

Whether this is a school, club, church, sports centre etc., to be able to work more effectively with all children and young people during the times they are there, including those with additional needs, is important.

But that is really just scratching at the surface of what these organisations, and indeed all of us, could and perhaps should, be offering to families that are often experiencing daily stress.

In many ways, it’s an ‘organisation focused’ approach… “We have some children/young people/families that we struggle to support, we need some solutions to help us to do this better”.

It’s putting the needs of the organisations at the heart of the matter, rather than the needs of the children/young people themselves and the families that they come from.

And these two sets of needs may be very very different indeed!

A story from last summer really helps to illustrate this…

It was the beginning of the school summer holidays and a family that includes twin children with additional needs was facing the six-week school break with no respite care available for them at all.

Six weeks of constant 24/7 care for their two children, and the parents were finding the prospect pretty stressful and daunting!

They had tried all avenues to get some respite or support but nothing was available, or there was no budget that would pay for it.

So… they went to their local church and asked if there was any way that they could help…

Did they ask if their children could be included in Sunday School for an hour on Sunday mornings?

Or if they could bring them to the mid-week kids club?

Both of these settings are incredibly important, and to make them accessible, inclusive, and places of belonging for everyone should be a priority for every church, school, club, or similar venue, but that isn’t all that this family needed…

They needed help!

Real honest-to-goodness practical help!

Did the church turn them away?

Did the church say they didn’t have enough resources, volunteers or training?

Did the church say, “This is really a Social Services matter?”

No… they immediately saw the need, recognised that here was a family in crisis, experiencing real stress, and rolled up their sleeves ready to serve.

They took the children out on trips, they made meals for the family, some of the women took mum for a pampering session while the guys took dad out for a round of golf.

They did loads of practical things to support and serve this family.

They loved them, and by showing their love in this way it made an enormously positive impact on this family…

They were literally loved through the six-weeks of the summer holiday, and support has remained in place since, greatly easing the stress that this family experiences.

Every church, club, school etc. that has children and young people in it is going to have children and young people with additional needs, and their families, of all shapes and sizes.

Looking for ways to serve those families, both in their venues and where appropriate at the family home, is vital to families who regularly struggle, who are finding parenting a child with additional needs really stressful.

Helping families like the church in the story above did makes the headlines, but there are many other ways in which families can be helped through stressful times on a week-by-week basis.

Here are just a few suggestions:

– Don’t make a parent of a child with additional needs be the one that cares for their child in clubs, church, etc.

– Parents need a break, and they won’t get that providing 24/7 childcare.

– Look to provide one-to-one support to give these parents the opportunity to be refreshed, ready for the next challenge they will face!

– Offer childminding to parents so that they can come along to a social event etc. together.

The opportunity to just come to something is rare, so help them with this.

Over half of couples with a child with a disability say that it causes major relationship difficulties or breakups…  it’s a stressful life, so let’s also help these couples get some quality time together to invest in their relationship.

Think about holding a monthly drop in style event for parents with children with additional needs where they can come, share coffee and cake, make friendships, share stories.

Parenting a child with additional needs can be really lonely and isolating; schools, churches and clubs can help here.

Contact ‘Take 5 and Chat’ for ideas… www.take5andchat.org.uk Offer pastoral support to parents of children with additional needs.

There is so much to celebrate and enjoy in parenting a child with additional needs, but there are only so many times that you can clear up poo before you really just need to just talk to someone about the hard stuff (no pun intended…).

Maybe linking to Care for The Family’s befriending service might also be a good start? www.careforthefamily.org.uk

Recognise that many families with a child or children with additional needs struggle financially…

Much needed benefits are being cut back or withdrawn leaving families facing real financial hardship and stress.

How can schools, churches and clubs help here?

Maybe linking to Christians Against Poverty (CAP) www.capuk.org, or starting a food bank www.trusselltrust.org could offer practical help?

And don’t forget to just ask…  Among all of the practical things that can be done, and there are many, let’s not forget to just let these families know that they are not forgotten, and to ask how we all can help…

The smallest of gestures can make such a difference and mean the world to a stressed-out additional needs family!

These are just a few ideas, there are a great many other ways that schools, churches, clubs, and indeed all of us, can get alongside families with children/young people with additional needs.

If you are a school, church or club leader reading this, what will your organisations response be?

Or as an individual, what will you do?

Then let’s make a difference together…