Accessible? Inclusive? Belonging For All? What About You?

Around 20% of children and young people have long-term additional needs or disabilities of some kind. That’s about 2.5 million in the UK alone.

Many of them, and their families feel excluded from a wide range of social activities.

So how can we reach out to, and meet, the needs of these children and their families?

Schools, uniformed groups, children’s/youth clubs, churches, entertainment venues and more often suggest that what they offer is available for everyone, but is that true?

And if it is, have the bare basics been covered, or have they truly made every effort to enable everyone to fully participate?

I believe that there are three key steps that can be taken by organisations, and the people working or volunteering there, alongside people with additional needs or disabilities and where appropriate their families.

Three steps that can lead to all that is offered to be available to all, participated in by all, and a sense of common purpose or community experienced by everyone.

  1.  Accessible

Step one is to make it possible for everyone to access what is being offered.  There is a part of this journey that needs to be taken well before practical things start being done, and that comes in two ways:

A willingness to adapt – a change of heart to reach out to everyone, equally, and to be prepared to adapt what is offered to meet the needs of all.

A willingness to engage – recognizing that the people who know best how to adapt what is offered to suit their needs are people with additional needs or disabilities themselves and where appropriate their families.

Fulfilling their desire that when meeting their needs, they should be involved at every stage; “Nothing about us without us.”

This willingness can then lead to working together for the mutual benefit of all, ensuring that any practical or other adaptations needed are implemented well.  Accessibility isn’t just about ramps and wide doors though, it can cover a wide range of adaptations.

It can also be about how children, young people, or adults with additional needs or disabilities, and their families are, for example, able to find out about local groups, book onto camps or trips, and be able to attend these activities.

It is about the suitability of the website, process, programme, or venue etc. rather than the person.

  1.  Inclusive

Having worked with people with additional needs or disabilities to ensure that everyone can access what is being offered, step two is to ensure that everyone can fully engage with the activity or event.

In the context of children, young people or adults with additional needs or disabilities, this refers to how any obstacles or barriers that could lead to exclusion are removed.

It is about the club, group, camp, trip etc. ensuring that what it offers works for everyone, rather than a disabled person being expected to ‘fit in’.

The Equality Act 2010 provides a legal framework to protect people with a range of ‘protected characteristics’ including disabled people, from exclusion due to direct or indirect discrimination against them because of their disability (or, in certain cases, having a disabled relative).

But it shouldn’t be about merely meeting the requirements of the law, it should be about that genuine, heartfelt, willingness to work together to create an environment where everyone can join in, everyone can learn from each other, everyone can fully participate, everyone can take advantage of all of the opportunities available equally.

  1.  Belonging

While ‘inclusive’ is a big step forward from ‘accessible’, there is a third big step that can, and should, be taken in order for everyone to fully be part of a community; belonging.

‘Accessible’ is about ensuring that everyone can come.

‘Inclusive’ is about ensuring that everyone can participate. But ‘belonging’ means that everyone is accepted, valued, appreciated.  It means that they are genuinely missed for all the right reasons when they aren’t there.

That they have every opportunity to lead, serve, get involved in any way that they would like to.

That they are part of a community, a family, that shares a common purpose.

Anything less than ‘belonging’ is second best.

That isn’t to entirely dismiss the efforts many make to ensure that what they do, what they offer, is ‘accessible’ and ‘inclusive’, but to encourage them to work together with people with additional needs or disabilities, and their families, to press on to achieve belonging for all.

Because when belonging is for all, it benefits all.

A club, group, church, school, event etc. that doesn’t create an environment where everyone belongs is missing out, is not all that it could be.  And why would anyone want to settle for that?

So, let’s all strive together to make belonging for all a reality, in whatever way we can.  Let’s all be community, ‘family’, together…

‘It’s Not Your Fault…’ A Letter To The Mother Of Our Special Needs Child

To the mother of our special needs child, my wife…

It’s not your fault…

It’s not your fault that our child is Autistic.  It’s not your fault that he has Learning Difficulties and struggles to communicate effectively.  It’s not your fault that James has Epilepsy.

None of these things are your fault, or mine; they are no-one’s fault.  James is who he was born to be, who he was meant to be, with all of the challenges that that brings along with all of the joys that we experience together with him as well.

For there to be fault there would need to be failure, inadequacy, lack… there are none of those things regarding James, not from you, me, or anyone else.

James has a mix of our genes, and those have formed him into who he is, but to be blamed for any differences that this blend has created would be as absurd as finding fault in parents whose child has red hair, or is shorter, or can’t sing in tune, or is left handed…

James’ additional needs are not your fault, but they are what make you shine!

We didn’t expect that our child would have additional needs, or that these would be added to over the years, but the way you fight for him, care for him, love him unconditionally even when that might seem hard, does you great credit.

You fight for him…

When things aren’t happening quickly enough to give James the support that he needs, you are filled with a strong will to champion his corner, to call out poor performance in professionals, to challenge why things are taking so long.

You are better than me at asking the hard questions, putting people on the spot and forcing them to act, bringing about positive change for James and our family.

You care for him…

There is a lot of care that James needs, care that would be much less for a typical 16-year-old.

Whether it’s the whole range of personal care that needs doing, or just sitting with James when he’s had an epileptic seizure to make sure that he is safe and recovering, or just keeping him company when he wants it, you are there for him.

Whatever he needs, you are there…  and you being there means that sometimes I can be away with work, which really helps but I know it comes at a cost as you are then 24/7 James’ sole carer at those times, even though you never complain.

You love him unconditionally…

Even when yet again you are clearing up what you would not expect to have to for a 16-year-old.

Even when James refuses to cooperate, doing the exact opposite of what you have calmly asked him to do.

Even when those rarest of rare things, a break from being carer to enjoy a treat, or a much-needed holiday, gets cancelled at the last minute because James cannot cope or is unwell.

You love him because of who he is, not in spite of who he is.

You juggle like a circus performer…

Caring for James, keeping the household going, managing to hold down your job, volunteering at church in the children’s team, being wife to me, mum to Phoebe as well as James, daughter and daughter-in-law, sister, friend and more…

It’s amazing how you manage to keep everything going without dropping something…

I’m very grateful for all that you do and very proud of you!

So, when things are tough, when it’s hard to see the future clearly, when that future looks difficult and there seems no end to the demands on you; when you worry about the future for James and what that will look like, please remember this…

It’s not your fault, I’m fighting for our family alongside you, I care for you as much as you care for James, that I love you unconditionally too, and that when you are juggling and feel like you’re going to drop a ball…

You can toss it to me and I’ll catch it.

We’re in this together, for life and all that it can throw at us, and there is no-one I would be rather facing life with than you.

Your loving husband and friend,

Mark x

Fits, Fears, Faith and Facebook

I remember so vividly the morning that James, our 16-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…

My wife, 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 our faith brings calm in a crisis, offers reassurance and a presence that is so important in a storm.

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 for James 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…

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 at that time, 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…

James has had further fits since, and will be starting medication soon, 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)

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

Seeking the Truth About ‘Hidden’ Disabilities

Hidden:  adjective kept out of sight; concealed.  verb past of ‘hide’

We frequently encounter the term ‘hidden disabilities’; it is in widespread use across the media, throughout society, within many of the various disability communities.

In general, most people have a view on what they think it means; they will refer to it as relating to disabilities that are deemed by society to be less ‘obvious’.

Often included in the list that is offered by way of explanation will be Autism, Attention Deficit Hyperactivity Disorder (ADHD), Dyslexia, or maybe some mental health conditions.

It seems to suit society to compartmentalise a whole range of disabilities, disorders, conditions or illnesses into two broad groups; those that are more obvious ‘visible’ disabilities (especially if there is the big clue of a wheelchair, a guide dog, or hearing aids) and the trickier to spot ‘hidden’ ones where there is no perceived visible clue.

I wonder, however, whether this is just lazy thinking developed to excuse people from taking the trouble to look a little harder or ask the right questions…

‘Hidden’ or ‘Overlooked’?

A so called ‘hidden’ disability isn’t hidden to the person who has it.  It will influence their life and perhaps the lives of their family and friends in a wide variety of ways.

In some cases, it will mean that the person concerned can and does, perhaps with some adaptions and strategies, live a relatively ‘normal’ life (not that there is a clear definition of what ‘normal’ is!)

In other cases, the persons disability or condition will mean that they face many daily struggles and perhaps need a high level of care support to get through each day.

Society neatly places people either in the ‘visible’ box, with lots of support available, lots of TV advertising to encourage us to give towards guide dog appeals, or to help children who use a wheelchair (and, by-the-way, there is nothing wrong with any of that), or in the ‘hidden’ box, where there is much less support, children are misunderstood to be ‘badly behaved’ if they are struggling to cope and have a meltdown, and society can ignore and overlook them and move on.

Dark overtones of the past

This societal approach of referring to ‘hidden’ disabilities, overlooking and ignoring the needs of many people with disabilities, conditions or illnesses as a result, has dark overtones of the past.

It’s not that long ago that children with so called ‘hidden’ disabilities were ‘hidden’ away in institutions, facing unimaginable horrors and often not surviving into adulthood.

Parents were told to forget about them and to ‘try again’.

These institutions still exist in many parts of the world and are a disgraceful stain on our global society.

That they are in any way making a comeback in the UK under the guise of ‘secure mental health units’ is grievous, not least because many of the children, young people and adults in them are misdiagnosed.

Older generations in this country grew up at a time when these institutions were commonplace in the UK, and consequently didn’t see many children with disabilities, often didn’t gain the knowledge and understanding about disability that later generations gained by being at school with a diverse range of children.

The term ‘hidden’ disabilities might suit many as a convenient way of explaining their ignorance, but is it a term that is toxic because of the past?

‘Disabilities’? ‘Differences’? or ‘Diversity’?

Many who have what society might term a ‘hidden disability’ would strongly argue that theirs is not a disability at all.

Some autistic communities, for example, will often refer to ‘difference’ or ‘diversity’ rather than ‘disability’.

We’ve seen a change in the terms used by professionals regarding Autism too, from Autism Spectrum Disorder, to Autism Spectrum Condition, to increasingly the use of the descriptive term Neuro-Diversity.

Whatever term people choose to use for their difference, as a society we all have a responsibility to understand, adapt to, and more than anything celebrate the widely diverse human family that we are all a part of.  Why would we refer to anyone as ‘hidden’?

‘Hide’ or ‘Seek’?

It’s true, of course, that because that understanding, adaption and celebration isn’t commonplace in society, to put it mildly, many people with differences and diversities themselves ‘hide’ them.

It’s not that long ago that most people understood that being autistic, for example, was an almost entirely male difference.

We now know better, knowing that females are just as likely to be autistic but are generally more accomplished at ‘hiding’ their differences by copying their peers, for example.

By why should they feel that they have to?

Yes, of course most children and young people want to ‘fit in’, to be like their peers, but is this because we as a society have set such a high stock in being ‘normal’ (whatever that is!)

From birth there are targets to attain, standards to meet, markers to reach… it’s relentless.

Is it time for us to instead of chasing these ‘normal’ checkpoints, to seek and celebrate the differences and diversity in our children; to encourage each other to wonder at the amazing human species that we are a part of in all of its variety?

Let’s not keep ‘hidden’ any more, let’s be visible, conspicuous, and celebrated!

Confessions of a Special Needs Parent

Parents of children with special needs experience many highs and lows along their parenting journey, but what are the secrets?

What never gets mentioned, what never gets talked about, what always gets hidden; what are the confessions of a special needs parent?

Well, it’s time for that to change, time shine a light on the secrets, time to say to other special needs parents “Yep, if this is you too then you’re not alone”.  So, here’s a few of mine…

We never saw it coming…

Never, in a million years, did we expect to have a disabled child.  Our first child, Phoebe, had developed as expected, hitting or exceeding all of her key developmental markers, crawling, walking and talking on target.

We fully anticipated our second child, James, to develop in the same way.

A normal full-term pregnancy had been followed by a slightly difficult but generally unalarming birth; all had seemed as expected.

Early concerns about James’ development were brushed aside by comments about girls developing faster than boys, it was nothing to worry about.

But as time passed, worry we did, and when James hit two and wasn’t talking or responding to his name, wasn’t giving us eye contact, was in his own private bubble, our worries strengthened into fears.

A few months of various tests and assessments later, we received the news that James, aged just 2½ years old, was now officially labelled as autistic with complex learning difficulties.

We really had no idea what that meant and were generally just cut loose to figure it all out for ourselves… we never saw it coming and we were in total shock.

I grieved for the lost future I had imagined for my child…

We all have dreams for our children; these are usually totally unrealistic and change over time as our children grow up and their skills and talents gradually develop with them.

When a child is diagnosed with special/additional needs or a disability, those dreams are shattered in an instance.

They might be our dreams, selfish dreams, but we don’t have time to process that they are lost…

They are snatched away in the amount of time it takes for someone to deliver a diagnosis to us.

I dreamed that James would open the batting for England in an Ashes test match, Lord know we need someone, or be the first person to set foot on the moon since Gene Cernan in 1972, the year an eight-year-old me was asked at school what I wanted to be when I grew up; “Astronaut” I said, without hesitation.

I had many years to come to terms with the fact that this would not be a dream I would realise, but seconds to come to terms with the fact that I wouldn’t live that dream out through James either.

The loss of those dreams for James were hard to bear, and the complete unknown of what the future now held meant dreaming new dreams was impossible.

We were dreamless, grieving, hurting.  Yes, it was selfish.

Yes, it was wrong to think that James without those dreams of ours was somehow ‘less’.  Wrong to think that an autistic child is in any way second best to any other child.

But in the rawness and pain we were experiencing, with nobody around us to help to inform and encourage us, it is easy to see how this could have happened.

Do we think this way now?  Of course not, we know differently now, but I totally understand parents that are in this place and would never judge them for being where we’ve been.

I prayed for my child to be “healed”…

Yep, this.  Of course I did… having received the diagnosis I beat on heavens gates to make God hear me.

“Why my child?” “Please, take this away from him!” “Why our family?” “Please, let this not be true!”, and in my deepest, darkest moments… “Why me?” “Why do I have a disabled child?”

Judge me if you like, but most if not all special needs parents have been in that dark place.

We are looking into a deep, dark tunnel and cannot see any light at the end of it.

We have nobody to help us know that it won’t always be like this, that we can still make a wonderful future for our child and ourselves, and even if we did we might not believe them.

Yes, it’s selfish, but who among us has never harboured selfish thoughts?  These get magnified in times of shock and distress, and not everyone is able to climb out of that pit.

Do I pray these prayers now?  Of course not…  I know so much more now, I understand James so much better now.

I celebrate his neuro-diversity instead of fearing it, I pray for James to have the future God has planned for him, not the one I might once have wanted for him.

Again, though, I totally understand parents who are still rattling heavens gates for a ‘cure’ for their child.

I for one am not going to judge them, but where I can I will get alongside them and help them to see what we’ve been privileged to see and learn through James. The future’s bright, just a little different.

There are two children, the ‘real’ one and the ‘virtual’ one…

There are two James’s… the ‘real’ one that we love, journey through life with, play with, go for trips out to the café with, laugh with, sit and watch TV with… when describing this James, we accentuate the positives, we share his successes, we celebrate his victories…

…and there is the ‘virtual’ one that has a Social Worker, a SALT (Speech And Language Therapist), several CAMHS (Child and Adolescent Mental Health Service) team, a Learning Development Officer, several school staff, various reference numbers, a mountain of paperwork and a separate bank account for his benefit payments.

When describing this James, we have to talk about the hard stuff, the things James can’t do at all, or only with help, the ‘icky’ stuff, his lack of awareness of danger, his inability to communicate effectively, his meltdowns, his seizures.

After filling in yet another 40-page form (and wishing, more than anything, that on page one there was a box that said “tick here if nothing has changed and then return the form”) we are left emotionally and mentally shredded.

We still love the ‘virtual’ James… of course we do, after all there is nothing we’ve said about him that is untrue, but we do need the counterpoint of the ‘real’ James to keep us going!

So, here’s a few of my confessions then… they say confession is good for the soul and there is something liberating about sharing these thoughts.

It is sobering to reflect on where we once were but encouraging to recognise where we are now, where James is now.

Any special needs parents reading this that are in that dark place, perhaps our journey can encourage you too and help you to hope for a better tomorrow.

Our children need us to believe in them, to be there for them, to love them, and to learn from them…

We never saw it coming… but we can help others who are experiencing this today to cope better.

We grieved for the lost future we thought we wanted for our child… but we see another, positive, future more clearly now…

We prayed for our child to be healed, but now we pray for our eyes to be opened to the future God has for him…

We recognise both the ‘real’ and the ‘virtual’ James’s and love them both.

The secrets are out… but then, as so many special needs parents share them, perhaps they weren’t so secret after all!

What My Young Carer Daughter Teaches Me

We have two children; James, 16, Autistic, with Learning Difficulties and Epilepsy, I’ve written a lot about all that we learn about life through him; and Phoebe, 19, neurotypical and a young carer, this blog is all about what we learn from her.

The arrival of a second child into a family is almost always disruptive.

The first child has probably had a lot of things their own way in their life up to that point and suddenly there is competition for attention, praise and rewards.

Phoebe was 2½ when James was born, and it’s fair to say that she had been the centre of our universe during that time!

Recognising the challenges that she now faced, that any oldest child faces on the arrival of a sibling, lots of people remembered to make a fuss of Phoebe, to give her cards and presents, helping her not to feel overlooked or left out.

One of the cards that Phoebe received had some foam flowers on the front; she loved it and wanted to take it to her room with her when it was bedtime.

Several hours later she wandered into the lounge to declare “Daddy, I have a flower up my nose…”

Some investigation established that one of the foam flowers was now firmly stuck deep in her nostril, resulting in a nocturnal Saturday night trip to A&E, which was now filled with drunks that had got into fights, footballers who had tried to ‘run off’ their foot/ankle/knee injury and now realized it hadn’t worked, and a 2½ year old little girl with a flower up her nose!

After that unfortunate start, life for Phoebe got back into a regular pattern.

She became very attached to her young brother and enjoyed having him around.  When Phoebe was 5, James was diagnosed as Autistic and with Learning Difficulties; a difficult time for us as a family and one that we tried to protect Phoebe from as she had enough to deal with having recently started school.

Questioning

As both Phoebe and James grew up, however, it became more and more obvious to Phoebe that James was not like the brothers or sisters of her friends.

James didn’t talk, he didn’t respond to his name, he didn’t really play with Phoebe.

It would have been easy for Phoebe to have just become more distant from her brother, to ignore him, but instead she asked us questions, lots of questions…

“Why doesn’t James talk?”, “Why won’t he play with me?”, “He’s different to my friends’ brothers, why?”

Concern

As parents trying to come to terms with James’ diagnosis ourselves, it was hard to answer Phoebe’s questions, but we noticed that Phoebe wasn’t just asking from a place of being upset for herself about the differences she was noticing, it was out of concern for James.

Her love for James wasn’t dimmed by his differences, if anything it grew as her understanding of him grew.

She realized that James’ differences were hard for him too.

Caring

We noticed Phoebe becoming a caring, empathic girl, someone who always noticed when somebody else was upset, wanting to know what was wrong and looking for ways to help.

She became a staunch advocate for other children with additional needs too, standing up for them if others were mocking their disabilities, taking it personally if someone said unkind things about other disabled children, campaigning for equality for all.

Enquiring

Phoebe’s questions continued, became deeper.

She wanted to know more about Autism, about what it means to be Autistic.

She has an enquiring, inquisitive and searching mind, never resting until she has the answer to her questions, never settling for second best.

Supportive

She continues to care for James as well, looking out for his needs, learning a little sign language to help communicate with him better, sitting next to him at the dinner table and being the first to make sure he is using his cutlery, not his fingers, to eat, and making sure he asks for more, doesn’t just help himself from someone else’s plate!

Phoebe has always been happy to childmind James from the time when she was old enough, and even before then would tell us that she would tell the childminder what to do!

Selfless

The older James got, especially as puberty hit with all of the hormonal changes that brought, and then with the arrival of Epilepsy in 2017, there were many disruptive times.

Days when family plans suddenly changed, holidays that had to be cancelled, an increased focus on meeting James’ changing needs.

Phoebe has been magnificent throughout, always understanding, being selfless, still helping us to care for James.

Striving

Phoebe has learned not to settle for second best, but to strive for more.

She has shown this in the ways she has coped with setbacks in her own life, always emerging stronger and more determined.

She has shown this in her support for James too, always pushing him to do more for himself, and rightly calling us out when we do things for him that he is capable of doing.

For Christmas, Phoebe gave me a whisky glass with an inscription on it, a quote from one of my favourite historical figures, Winston Churchill, “My tastes are simple, I am easily satisfied with the best.”

Phoebe always strives for the best, for herself, for James, for our family; her gift to me is an excellent reminder of this.

Resilient

She might have chosen another of Churchill’s quotes, a quote which summarises how she has taught us so much, how her character has been formed in so many positive ways by her life with James and how this has rubbed off on the rest of us too.

How we’ve become more resilient as a family, supported by our wider family and many friends, as well as our faith…

“Never give in. Never, never, never, never – in nothing, great or small, large or petty – never give in, except to convictions of honour and good sense.” Winston Churchill

Phoebe continues to inspire us…

She is in the process of setting up a small business to provide fiddle/fidget boxes to churches and schools to enable them to support children and young people with additional needs better… and she delights us every day in the ways that she has responded so positively to the ‘different’ life she has had so far as the sister of a boy with additional needs.

She’s come a long way from that little girl with a flower up her nose, and we are immensely proud of her!

A Positive Year Ahead

Happy New Year!

Now there is a phrase filled with all sorts of questions, opportunities and possibilities!

Will it be happy?  How can we tell?

Do we say “Happy New Year!” with confidence that it will contain happiness, or out of hope that it might, or in defiance from a place where we feel happiness is unlikely?

As parents of children with additional needs, we become used to mixed emotions, a roller-coaster ride of great highs and deep lows, but what does a New Year bring for us?

More of the same, or will this year bring change?

If I look back to the beginning of last year, it was a very dark time.

Not just because of the short days (although those don’t help!) but because these seemed little hope that the difficulties we were facing with our son, James, were ever going to improve.

James (now 16, Autistic with Learning Difficulties and Epilepsy) hadn’t been able to leave the house other than a handful of short night-time drives since the previous July.

As we ticked off the sixth month for these difficulties, brought about by a massive collision of the onset of Epilepsy, puberty, and lots of changes at school, we couldn’t see any light at the end of the tunnel we were in, only more darkness.

We mourned, and continued to mourn, for the loss of all that James had been able to do, all the places he had enjoyed going to, all of the experiences that he was missing out on.

We mourned the loss of opportunities to go out together as family, with one of us always having to stay at home with James while another would go out to the shops, to visit friends, to church.

Six-months later and we were still in the same dark place.

The days were long, the sun was shining, but we were still trapped with James inside our home, James’ ‘safe place’.

A year had passed since James had been able to go out to one of his favourite places, the café at the little grass airfield at Compton Abbas in north Dorset.

Facebook ‘helpfully’ sent me a reminder of that difficult anniversary, and as I looked at the photo of a smiling James enjoying his trip out and the lemonade and millionaire’s shortbread he was devouring, it really choked me up.

Would he ever be there again?  Would we ever have family trips out there like that again?

Throughout this difficult time, we were kept going by the love, support and prayers of many wonderful people…  some that we know very well, some that we know a little, others that through the wonders of social media we don’t really know at all, but who nevertheless were thinking of us, cheering us on, and in some cases praying for us.

Just two months after that heartbreaking Facebook reminder, we were back at Compton Abbas airfield café enjoying millionaire’s shortbread and lemonade again.

I was in tears again, although this time they were tears of joy.

The breakthrough had happened just as quickly as when James’ troubles had started.

A combination of keeping on trying, great support from CAMHS (Children and Adolescent Mental Health Service), James being really brave, and loads of people being positive and praying for us, saw James able to head back out into the world again.

The header photo for this blog is of us all visiting the café just before Christmas, a wonderfully happy and joyful reminder of the difference a year can make.

We’re not totally back to where we were before it all started yet; James is still visiting school a couple of times a week rather than being back full-time, and there are still places that James struggles to visit, including church, but we are so thankful for where we’ve got to, where James has got to.

We’ve all journeyed so far since this time last year.

So, take heart from our story.  Whatever you are facing, however dark your days currently are, there is hope for a brighter tomorrow if you can cling on to it.

Surround yourself with people who understand, who ‘get it’.  People who will be positive and encouraging, and if they have a faith will pray.

Look for new strategies to try, new ways to make a difference, new ideas.  I am often inspired by the words of Winston Churchill, Britain’s wartime leader and a man who knew dark days more than most…  among much great wisdom said these words, “Never give in. Never, never, never, never – in nothing, great or small, large or petty – never give in…”

He didn’t, and neither should we.

Never settle for what is left, always strive to regain what was lost, and more!

So, will this be a positive Happy New Year ahead for you and your family?

Never stop trying to make it so; never give in, and maybe, like us you will look back a year from now and be amazed at what a difference a year can make!

Happy New Year!

…and a Happy New Year?

Christmas has come and gone, with all of its celebration, joys, and maybe some trials and tribulations thrown in for good measure…

Racing up next we say goodbye to the old year and cheer in the new; but how that makes you feel might well depend on the kind of year you’ve had, and any expectations you may have for the year ahead…

In the world of additional needs parenting, unpredictability comes as standard…

As Tom Hanks’ character reminds us in the film ‘Forrest Gump, “My mama always said life was like a box of chocolates.  You never know what you’re gonna get.”

Well, what did you get in 2018?

You may have had a year filled with blessings, with delightful and positive steps forward as you have cared for your child or young person.

Maybe they have coped really well with difficult situations, adapted well to change, or made a breakthrough in a previously difficult area for them.

Perhaps you look back on the year with relief, with tears of joy, with deep thanks for all that it has brought.

Or maybe you’ve had a hard year; a year of setbacks.

A year where it seems to have been a constant battle; one step forward, two steps back.  Maybe you’ve seen regression, challenge and struggle.

Perhaps you look back on the year just thankful to see the back of it; your tears are tears of grief as you think of all that has changed for the worse.

In reality, like me, you will probably look back on the year that is ending with a mixture of both of these feelings… recognising the good things that the year has brought, while touched with sadness for the things that have changed for the worse.

In our case, we’ve seen a year where James has developed his personality.

We’ve seen joyful times together, seen successes, and enjoyed seeing James growing up (he celebrated his 16th birthday in June).

This joy was tinged with sadness as James spent much of the year struggling to leave the house, including for school, although the last few months of the year have brought significant breakthrough with this.

With all of the emotions that looking back on the year stirs, it is easy to look at things only through our own eyes, in our own strength, from our own perspective…

And if we do that, we can be crushed by the hard things that have happened, overwhelmed by the challenges we have faced, allowing the good and wonderful things that have happened to be blotted out, erased by the pain of the difficulties we and our children experienced.

But let’s listen to what others might be saying to us, even through the pain, and be encouraged by the affirming words that they share…

Often it is others that see the positives that we can miss.

It is through the storms of life that we can see friends and family working in our lives the most, if we have a faith we may lean on that too, and it is through the challenges that life brings that we are molded into the person we need to be for our child. 

Are we willing to be molded?

Or do we resist, wallowing in our self-pity and being defined by the difficulties we and our children face, rather than thinking about how they might shape us positively to serve and help our child and others?

So, with these thoughts in mind, what will we take with us into the new year ahead?

Will we drag the chains of the struggles and trials of the old year with us into the new?  Will we allow the failures, regressions and setbacks of the last year define us and our child?

Or will we use these experiences to shape us positively for the year ahead…  to bear our scars as symbols of where we have been, what we have endured together, the experience we have acquired together, to take into the future to help us, our child, and others, to navigate through another year…

As the new year resolution slogan goes… ‘Be more awesome than last year…’

You were awesome last year, you are awesome now, you will be awesome in the year ahead…  and you don’t have to create all of this amazing awesomeness on your own… you journey with others on the same road as you too!

Of course, there will be tough times in the year ahead, there will be times of rejoicing too.

But whether we are crying tears of grief or joy, if we share it with each other, if we trust in each other, there are people who will be there with us, fighting for us, in our corner, that have got our back…

And that, for me, means that whether next year is a Happy New Year or not, I know that me and my family will make it…

How about you?

You Are Not Alone!

Christmas can be a very difficult time…

Especially for parents of children with additional needs.

Everyone seems to be enjoying a perfect time of celebration, with invitations to meals, parties and festive fun flooding in, while for many of us the holiday period is a lonely time.

We can find that we are overlooked for the parties as people “Didn’t think you would be able to come due to, you know, having Billy…”  Or if we suggest people come over to ours, we can find they have “Other plans…” that don’t include us.

Siblings and parents of children with additional needs often feel excluded from a wide range of social activities, especially at Christmas.

Many families with additional needs can feel lonely and isolated during this time, finding themselves merely trying to survive the holidays rather than enjoying them.

But it doesn’t have to be that way, there is a support network out there, on our doorstep.

A group of people who get it, who understand what it’s like to parent children with additional needs; a group of people who have first-hand experience of how isolating and lonely a life it can sometimes be.

So, who are these amazing people and where can we find them?

Well, we don’t have to travel far to find out, just look in a mirror and you’ll see one…

Our communities are full of parents just like us who experience similar things to us.

One in five children have an additional need or disability of some kind, that’s about 2.5 million across the UK, and even parents of children with more complex and rare disabilities are not alone, there are parents like you out there too!

Christmas is supposed to be a season of hope, a season of goodwill to all…

How about if we all were to reach out to other parents of children with disabilities in our community and together make this a really special Christmas, spent with people who get it, people who understand, people who carry the same scars as us?

People we can share the highs and the lows with, because they will have lived many of them too!

But where can we find them?

Well, we may have some contact with other parents through school, clubs, church or other places that we and our children access.  We might have a few contacts on social media too (see later for some ideas there).

Some organisations run events to bring families together, there may be something happening near you.

Take 5 and Chat

Friends of mine run an organisation called ‘Take 5 and Chat’, providing or supporting drop-in centers across the UK that are geared up for supporting families with children with additional needs and helping them to meet up.

Have a look to see if there is one near you, or if not, how about contacting them about setting one up:  www.take5andchat.org.uk/sign-posting/

Additional Needs Alliance

I co-founded this support group about six years ago and since then almost 1,800 people have joined, including parents, children’s and youth workers, and more.

It’s a lively, vibrant on-line community, but people also use it to link up locally too…

There’s sure to be some people near you, why not ask:  www.facebook.com/groups/additionalneedsalliance

Contact

Contact are an organisation that provides support services to families of disabled children across the UK.

As they themselves say, “We support families with the best possible guidance and information.

We bring families together to support each other.  And we help families to campaign, volunteer and fundraise to improve life for themselves and others.”

Worth a look?  www.contact.org.uk

Mum networks and Dad networks

There are loads of online networks set up to support parents, including www.mumsnet.com and www.dad.info

These networks often include threads for parents of children with disabilities or additional needs and can be a great way to find local contacts.

So what do you do when you’ve found them?

Well, that’s up to you, but connecting with people who share a similar journey as you gives you a world of opportunities…  swapping tips and ideas, play dates, friendship, childminding, whatever you want it to be.

One thing is certain though, if you connect with a bunch of people who get it, who are nearby, and who you can chat to about the things you both share, about everything, you’ll never be alone!

Now, where’s that diary?