How Special Needs Parenting can be a circus

Special Needs parenting can be a bit like a circus sometimes, maybe more than we would like to admit! Here’s a (hopefully) light-hearted look at how at times we can play many of the familiar roles of circus performers…

Circus (noun): a travelling company of acrobats, clowns, and other entertainers which gives performances, typically in a large tent, in a series of different places.

Juggler

Most of us probably play this role all the time… keeping all of the balls in the air, desperately trying to keep them all going in the right direction even when other people are lobbing extra balls at us to add to the pressure.

The only difference is that the circus juggler comes to the end of their performance and, with a carefully choreographed drum roll and “ta-da!!” from a trumpet somewhere, catches all the balls, takes a bow, and leaves the ring for a well-earned break.

Special needs parents, on the other hand, need to keep on juggling forever like some Duracell bunny whose batteries never run out!

Clown

The clown is jolly, full of laughs and jokes, but when you look closer you see that the painted-on smile can mask what is beneath.

Clowns can be hilarious on the outside, the life and soul of the party, but inside can be hurting, struggling, sad. Special needs parents can wear a positive face while being broken inside, the forced smile covering the pain within.

We can also look as ridiculous as a circus clown most days too… getting dressed at all can sometimes be a ‘win’, and vaguely matching clothes? #unlikely

I’m reminded of the words to the song… “But where are the clowns. Send in the clowns. Don’t bother, they’re here.”

Acrobat

Then there is the acrobat, swooping overhead or teetering on the tight-rope, carrying out amazing feats of balance and agility.

Sometimes there is no safety net below to save them if they fall and so the risk is high.

Special needs parents sometimes have to summon super-human abilities to be everything, and everyone, that our child needs.

Sometimes we can even be in two places at the same time, and we all are equipped with eyes in the back of our heads as well as a natural ability to balance everything!

Sword-swallower

Oh, those times when we swallow the sharp things we’d like to say to people; perhaps to the unkind person in the supermarket who has just scored our parenting as ‘poor’ or been unkind to our child who was having a meltdown.

Or the professional who still firmly believes that three years of reading books teaches them more about our child than our lifetime of parenting has.

Sometimes swallowing those swords hurts; sometimes we wish people knew how much their words hurt too.

Ringmaster

And keeping the whole circus going, coordinating all of the different performers and acts, ensuring that everything keeps to time, is the Ringmaster.

Special needs parents are great ringmasters, the P.T. Barnum’s of their family, running the ‘show’ like clockwork and ensuring that all of the educational, health and care needs of their child are met, as well as ensuring that they are loved, valued and included.

The former three might sometimes need a whip, the latter three just need us to be there, alongside them in the ring.

The tent

All circuses have a tent, the place where the show is held, where the equipment all arrayed ready for the performances, where everyone watches the show.

For special needs parents it can sometimes feel like we live in a circus tent… everyone watching and waiting for something funny or tragic to happen, all the extra unusual equipment we may need for our child, and harking back to the days when there were performing animals in the circus, some parents would be familiar with the unusual smells!

But if special needs parenting is a bit like a circus, we are presented with a choice.

Either our version of the circus can be a tired, shabby looking one without much to interest or attract anyone; or it can be spectacular, a really awesome place to be, fun for us, our children, and anyone who cares or dares to turn up.

Let our circus be the very best that it can be, performing to the utmost of our ability, and inviting others to join us for the show of a lifetime!

Roll-up!! Roll-up!!

How holiday haircuts teach us about routines

Last week James needed his summer holiday haircut.

A simple enough task you might think, but in James’ case it is one of very many tasks that require a routine to be known, and more importantly rigorously followed, in every aspect.

Firstly, there is the location; sat on the wooden bench in our hallway at home.

Then there is the identity of the ‘barber’; me, ably assisted by Clare (his mum) who keeps all of the clippings out of his face. Then there is the ‘distraction’; James’ iPad, fully loaded with films, his favourite YouTube clips (currently Japanese car or train journeys!) etc.

Finally, there is the clipping process itself (grade 4, by the way, for any aficionado’s), which involves starting at the back, then the front, and finally the most difficult and suspense filled part of all… around the ears.

James has his hair cut like this about three times a year, always during the longer school holidays.

As long as we keep to this routine, all is fine. Any change would be enormously difficult for him, and therefore for us.

I have visions of him going in to school with Grade 4 at the back and front but long at the sides over his ears!

The reason I share James’ haircut story with you is to illustrate that routine and familiarity are fundamentally core to the coping mechanisms of many children and young people with additional needs; particularly but not restricted to Autism, ADHD and other similar neuro diverse conditions.

So often this is misunderstood by adults, or just plain missed, with awful consequences for the child/young person.

I heard a story of a young person with ADHD who, in order to cope with change, needed to stand in the doorway of a room he was entering/leaving and tap several times on the door frame.

He did this wherever he went, including at school, but often 30 pupils trying to leave the classroom for their break together were not interested in waiting for him to complete his routine and would push him through the doorway, resulting in him lashing out in desperation.

This was interpreted as violent behaviour and he was excluded from his school and sent to a Pupil Referral Unit for young people with violent behaviour.

Now imagine if the school staff had been better trained.

If they had had a system where that young person could leave 30 seconds before everyone else, or leave after everyone else (whatever worked best for him) so that he could complete his routine.

If they had understood why he needed to do that. If they had understood other ways in which he coped with change, with a busy school full of pupils and noise, with the overwhelming of his senses on a daily basis, perhaps then there could have been a better outcome for him and for the school; a better strategy than sending him to a Pupil Referral Unit.

The opportunities to make good or bad choices regarding children and young people with additional needs or disability exist every day.

I remember a youth leader being put through to my ‘phone one day whose opening line was; “I’ve got this lad in my group, he’s got ADHD and he’s an absolute nightmare. What can I do to exclude him?”

I took a deep breath and asked the youth leader to explain to me what had happened.

It seems that during the group’s ‘talk time’ this lad had started to get a bit unsettled, showing early signs of anxiety and stress.

The leader had told him that as he couldn’t sit still and listen he wasn’t going to get tuck this week. The lad liked tuck (who doesn’t like tuck!) and so things ratcheted up a notch or two.

The leader responded by saying that as the tuck penalty hadn’t worked, the lad was suspended from club for a week and so couldn’t come next week.

Next week was party night and the lad had been looking forward to it immensely, so things then really kicked off and he was sent home (I’ve summarised a much longer story).

I rewound the conversation with the youth leader asking him to identify all the times that opportunities had been missed to support this young person, to recognise his needs and to help him to manage his stress and anxiety.

There were many… the leader finished the call saying that he was going to call the parents of the lad straight away, to apologise and to invite him to back to the party the next week, by which time a strategy to support the lad would be in place, known by the whole team.

All of these examples show us that taking the time to understand each child or young person individually, to understand what they find hard and why, to understand how they cope (and sometimes fail to cope) and why; to help them to understand that we are there for them, to help them and to support them, all of this is so vitally important.

So often, the challenging behaviour that we might see, and wrongly judge them for, is a final cry for help when we’ve missed so many other pleas for help and support already.

It’s a last desperate way of trying to get our attention, or a final attempt to respond to their overwhelming urges.

Surely, however we look at this, we must put the child/young person first; do everything we possibly can to remove or limit stress and anxiety, ensure the necessary routines are followed, and so help them to cope.

Putting their needs above our own; us doing the adapting rather than expecting the child to.

That’s why, in a few months’ time, I’ll be sat on the wooden bench with James (always on his right), clippers in hand with Japanese car rides on his iPad, praying that I can get the side bits of his haircut done so that he doesn’t go to school the next day looking like Max Wall…

Haircut Sir?

Why Additional Needs Parenting Is Like Body Surfing

Have you ever tried body surfing? Think surfing, but without a surfboard or body board, just using your own body and maybe a small hand board to ride the waves. Just you, the surf, and the beach… idyllic thought isn’t it? So, what has this picturesque scene got to do with additional needs parenting? Well it all depends on the size of the waves!

Small waves

We face and deal with small waves every day, the kind of waves that are about getting everyone up and navigating our way through all of the challenges of a typical day before we crash into bed at night. Sometimes just making sure everyone is dressed, fed, and is alive by the end of the day is all we can manage, but we generally cope with the small waves.

Sometimes they can, like with real body surfing, be great fun too! Helping us to experience new things, to learn more about our child or ourselves, to grow and develop. We might find ourselves washed up on the beach from time-to-time, but we and our child jump up and run back in to the surf once more to try again.

Bigger waves

Some days are different. Some days we face bigger waves, waves that can overwhelm us, waves that toss us around and pound us into the sea bed below. Waves that fill us with uncertainty and fear. Like when our phone rings and we look and see that it is school calling. Or when our child has a seizure, or becomes seriously ill, and is rushed into hospital. Or when we get that letter telling us that our child is being reassessed for their benefits.

There are many bigger waves that crash down on us as we parent our child with additional needs or disability, more than we can probably count, but through them all we learn to be resilient, to ride as many waves as we can and to come back up for air again.

Biggest waves

As parents of a child with additional needs or disabilities, we will all face the biggest waves, maybe more than once. These are the waves that can break us, can leave us with scars that last for life; waves that can even drown some of us. Like the wave that hits us when we receive the diagnosis for our child, or the wave that hits us when our partner cannot cope anymore and leaves, or even the monster wave that carries our beloved child away for ever.

These waves do not come often, but when they do they can be devastating. We cannot body surf them, they are too powerful. We cannot duck under them, they run too deep. We cannot swim over them, they are too high. We can do nothing other than to be carried along by the wave to wherever it takes us.

But, whether we are playing in the small waves, being tossed around by the bigger waves, or being broken by the biggest waves, we do not need to do so alone. Some of us might have a faith, and this can help and sustain us in the deep depths of despair; for others it might be the company of friends and family, journeying with us and helping to pick us up when we are washed up on the beach again. We might connect into support groups that link us with people that have the same scars as us, people who have been battered by the biggest waves and are able to use their experiences to help others. Whoever we turn to for support in the hard times, let’s remember how much of a difference that made and look to help others in a similar situation to us when we can.

So, let us face the waves of life with new hope, with trust in our hearts, with renewed faith, receiving and giving support along the way. Let’s not just body surf the waves of life, but let’s dance on them together!

Who Would Have Believed This A Year Ago?

It’s been quite a year!

As we sat around the meeting table yesterday for yet another ‘Child In Need’ review meeting, it was almost impossible to believe the progress that James has made in the past 12 months.

Stories flowed from social worker’s, school staff, CAMHS team members… all thrilled at how things had changed…

A year ago, our son James (autistic, learning disability, epilepsy), hadn’t left the house for 10 months; not to school, not to the shops, not to church, not to anywhere.

We wondered if he would ever be able to leave the four walls of our home, James’ safe place, again.

Our hearts were breaking as we received less than helpful reminders from Facebook about where we had been as family a year before.

James’ world had changed, seemingly for ever, with the arrival of epilepsy in 2017, causing him to withdraw into his safe place at home.

School had stopped first, then trips out to his favourite places, then going outside at all.  We briefly managed to get him out for a few, short, evening drives, but he soon started to refuse these too.

Even stepping outside of the back door to collect some of his favourite things from a table was really difficult for him.

In May last year I wrote a blog post that described how we were doing as family as we journeyed with James through this difficult time… ‘Additional Needs Parents – Disrupted, Resilient, Vulnerable, Broken, Loving’…

It articulated clearly the way we were all struggling, but that in all of the struggles we were still bound together, in love:
https://theadditionalneedsblogfather.com/2018/05/11/additional-needs-parents-disrupted-resilient-vulnerable-broken-loving/

It also references my favourite worship song, Cornerstone, a song that has sustained me and inspired me along this long journey with James: “Christ alone, Cornerstone, weak made strong in the Saviours love.

Through the storm, He is Lord, Lord of all.”  I wrote these words then, and they still hold true for me today…

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

A year on, and James was downstairs in his classroom at school as we held our review meeting, engaging with the staff and his fellow students as we shared about him, taking part in class activities as we discussed his progress.

James now attends school three days a week, starting with lunch and staying for the afternoon.

He happily heads out for trips to the shops, especially his favourite farm shop, or to the little café at Compton Abbas airfield, where we watch the light aircraft take off and land while we eat cake or millionaire’s shortbread, and drink tea or lemonade.

In June last year, Facebook sent me a reminder from 12-months before of when we had been there last… Pretty much the last time James had been anywhere.

Around then, I wrote this blog post… ‘Parenting  A Child With Additional Needs – It Is Well With My Soul’…  it is tough to read it now…
https://theadditionalneedsblogfather.com/2018/06/21/parenting-a-child-with-additional-needs-it-is-well-with-my-soul/

This was a low point for us all, but even in the middle of that hard time we saw hope for the future, hope through our faith, hope for James.  We didn’t give up on him, and he didn’t give up trying…

One little step followed another, and then, suddenly and amazingly, in August 2018, James was willing and able to head out of the house again…

I wrote this!! ‘These Are A Few Of My Favourite Things – And They Are Back!’
https://theadditionalneedsblogfather.com/2018/08/30/these-are-a-few-of-my-favourite-things-and-they-are-back/

Oh-My-Days!! How amazing it felt to write that… to see James out enjoying life again, exploring his favourite places again, engaging with people again.

Today he is regularly out and about, back out in the world and loving it… and so do we!

The photo for this blog is James and his mum out at Compton Abbas airfield café again a few days ago (with me taking the ‘photo).

If you had told me a year ago that all of this was possible, would I have believed it?

Yes, I think I would; in spite of the evidence to the contrary, in spite of James not having left the house for almost a year.

In spite of the team of professionals telling us that James might take years to get back to where he had been, even if he managed it at all.

We had faith… faith in James, faith in each other, faith in God and his plans for James, for us.  That faith never gave in, never stopped hoping, never stopped believing.

What a difference a year makes, an amazing year, and year of learning, a year of transformation…

This year has taught us many things, and teaches us still, but one thing that may be helpful to parents on a similar journey to ours is to share the words of Winston Churchill; words that we can certainly empathise with…

“Never give in, never, never, never…” 🙂

Is Being A Special Needs Parent Worth It?

This question lurks in the heart of every special needs parent; it is kept down, out of sight, but every now and then when we are tired beyond our ability to cope, knocked down by another bit of bad news, yet again clearing up something we hoped we would never have to see again, or trying to remember the last time we just stopped for a few minutes, the question sneaks back out of hiding and yells at us “Is it worth it?!”

Perhaps never before has humanity lived in such a self-centred, self-obsessed, self-serving, narcissistic, selfish society as we do now.

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’.

People are now taking their self-obsession a stage further with wedding companies offering the opportunity for you to have a single person wedding; to ‘marry’ yourself… it even has a name; sologamy.

So, what does any of this have to do with a blog post about children with special or additional needs?

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 almost 17, 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. For us, 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.

Serving our child, loving our child, self-sacrifice for the benefit of our child, this is the model that, as special needs parents, we follow.

This is a narrative that is more relevant, more inspirational, more aspirational, and more needed in today’s society than the cultural obsession with self that surrounds us.

Regular readers of my blog will know of the challenges that we have faced in the last couple of years with James.

Him not being willing to leave the house, especially in the day and particularly not to school; his 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 every now and then, we get a wonderful treat!

Like when James was sat with us and 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; how safe, cared for, and loved he felt, and it had us all in bits for the rest of the evening!

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; we create a different narrative, it becomes “Because it’s all worth it!”, “Because he’s worth it!”

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 and get to support a child or young person with additional needs when they are in your session?

Whatever your context, the counter-cultural message shines through… put your child before yourself, love your child for who they are, be self-sacrificing, serving the needs of your child.

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

Let’s be better people, to be the people we should be, to love each other, to serve others not ourselves. And let that be the case for the children we care for, whether they are our own or not… “Because they are all worth it!” 

Awesome, Amazing, Actually Autistic… That’s My Boy!

For parents of children with special/additional needs, there is often so much negativity, so much that is hard, so much that makes us want to curl up in a ball and cry.

Two years ago, James had his first recorded epileptic event, adding a new chapter to his journey that already included chapters called ‘Autism’ and ‘Learning Difficulties’.

His struggles with epilepsy and other significant changes going on then caused him great anxiety, to the point where in the summer of 2017 he just stopped going out of the house; school, clubs, shops, church, his favourite café, everything just stopped.

For over a year he couldn’t cope with going anywhere, couldn’t even manage anything more than a few, tentative, steps out of the back door of our family home to collect things we had left there to try to coax him out, blinking, into the daylight.

For over a year he was isolated from the outside world other than visitors that came to the house, and even then his engagement was limited to a handful of people who he really trusted to get close enough.

In August last year, things started to change; James unexpectedly agreed to come out for a drive to the local tip, a curious choice for a first trip out after a year, and hard to create a celebration there, but we did our best!

This innocuous start led to other excursions, to the shop, to the café, and by the autumn of last year we even started to say the word “school” again!

It’s now eight months after that initial short trip to get rid of some garden waste, a trip that seemed to declutter something for James too.

Over the Easter holidays we’ve been able to enjoy some great times visiting James’ favourite places; here are a few of them:

The Tip: Yes, it’s still there as a place to visit, James enjoying seeing stuff being thrown over the wall and watching all the huge machines that ‘live’ there.

The Farm Shop: A must for a drive out, James is so well known there that everyone knows him by name, and they order in his favourite iced gingerbread specially!

The Café:  A little grassy airfield in north Dorset has a lovely café and we stop there for millionaire’s shortbread and lemonade; a perfect pit stop as James watches the little planes taking off and landing.

The Brewery Shop: Yes, you did read that properly, we take our 16-year-old to the brewery shop, but for him to buy cans of his favourite tropical (and definitely non-alcoholic) drink.

And James has been getting back to school too…

Slowly, starting with a short visit once a week and building it up, today he was there for lunch and most of the afternoon, overcoming his anxiety and spending quality time with his school friends and the staff there.

We celebrated by, you guessed it, going to the tip!

We also went to the farm shop for James to do his shopping and say hello to the lovely staff there.

James was out of the house all afternoon and actually found it hard to come back inside the house when we got home, he wanted to do more!

It’s a million miles from where we were a year ago and we couldn’t be prouder of him…  our awesome, amazing, actually autistic boy!

Maybe you see your child somewhere in James’ story…  Maybe they are stuck inside, anxious about going out anywhere, retreating to the safety of home.

Maybe you worry about whether this will ever change, whether there is hope for the future…

James’ story says that there is always hope… always… so take heart, keep persevering, keep on keeping on and looking forward to that day when a simple trip to the tip becomes the best day of your year!

Then make sure the next trip involves a café… and cake!

Are You Being Silenced As A Special Needs Parent?

I don’t know about you, but I passionately believe in free speech.

I strongly feel that it is one of our most important rights, and it is one that I would willingly go to the barricades to defend, but when does discussion, debate, and even downright argument spill over into something much more sinister?

And what does this mean for those of us that campaign and stand up for the rights of some of the weakest in our community, including children with special needs who cannot speak up for themselves?

Maybe you have experienced this too, particularly recently, as it seems to be an increasing trend of our times for people who disagree with something or someone to refuse discussion and debate in favour of trying to silence the voice of the person they disagree with; to try to claim a position of authority which refuses to accept or engage with any other views than their own.

Those of you that are regular readers of my blog will know that I often include my autistic son, James, in what I write about.

His and our story continues to help many families who are on a journey a bit like ours, and overwhelmingly the comments we receive from readers are positive and encouraging.

We do, however, also get comments that are quite the opposite; that challenge not only what is written but my right to have an opinion or to write about it at all.

For example, some in the autistic community (but only a small minority, by no means all, most are wonderful), maintain that as a parent of an autistic child I have absolutely no right to share his, and our family’s, story.

People that have never met James, have never met our family, make assumptions about us as parents, decide whether we are actually autistic ourselves or not, and then pass harsh and unbending judgement about our lack of a right to share our story.

Now I have absolutely no problem at all with debate and discussion with people who disagree with me, that’s healthy and helps us all to learn from each other and to grow together, but to condemn someone to silence for having a different viewpoint to your own, based largely on unfounded assumptions and unfair prejudices, seems to take this over the line into what could be received as controlling and dangerously oppressive behaviour.

We’ve seen examples in the fairly recent past both from around the world and more locally where the crushing of free speech and the promotion of a single approved ideology that has to be accepted by all has led to terrible oppression and horrendous consequences for anyone with a different viewpoint, especially free-thinking liberal minded people.

Maybe you have experienced this kind of silencing yourself?

Maybe you have been told what you must believe, or what you must say or not say? Maybe that has been by people in the disability community, or by professionals, or by other parents, or by family or friends? Maybe you have been able to stand your ground, or perhaps you’ve found it to be just too hard and have given in?

If that is you, remember that you do not stand alone, you do not fight alone, your voice matters as much as anyone else’s and it deserves and needs to be heard. There are many of us that are right there with you.

So, I’ll keep on speaking out, keep on standing up for those I feel called to stand up for, and will respond to the hatred with kindness, to the anger with compassion, to the oppressors with forgiveness. I encourage you all to do the same, let’s all stand together in love…

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 person’s 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.

Autistic children, for example, 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 increase 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 aren’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’ anymore, let’s be visible, conspicuous, and celebrated!

A Child First, A Disabled Child Second

What do you see when you first meet a child with additional needs or a disability?

That may, of course, depend on whether their additional needs or disabilities are visible; it may be ‘hidden’ as so many conditions are.

But even then, we would be missing the point; what we should see first is the child, a unique, wonderful, amazing child.

All too often, when someone is asking me for help regarding a child with additional needs or disabilities, the starting point is ‘problem-solving’, centered around the child’s condition.

“I’ve got an Autistic child in my group, how can I include him?”, or “I’ve got a Dyslexic teenager in my class who is struggling when we read…”

It’s easy to see how this narrative can form, it comes from a place where we’re trying to get a child that doesn’t fit our model of children’s or youth work to somehow adapt, and the main thing that’s preventing that happening is their disability.

But surely there is a better way of looking at this?

A starting point that isn’t ‘problem-focused’ but is ‘child focused’?  That looks at what a fabulous, individual, gifted, child this is first, that starts to build a more positive narrative about how we can adapt to meet their needs?

Our son, James, is 16-years-old, is loving and affectionate, has an infectious belly laugh, loves Minions, the colour yellow, PlayDoh, and trips out to the farm shop or café.

He’s brilliant at jigsaws and can do 300-piece jigsaws upside down, just by the shapes.  James is a good-looking lad (I know, I’m biased!) who is loved by everyone who meets him.

He is also Autistic and has Learning Difficulties and Epilepsy, so needs things adapted so that he can access them and be included.

The folk at Sheffield City Council’s Children’s Team have created a website called SheffKids www.sheffkids.co.uk which is a brilliant resource full of really helpful support tools.

One of these is their range of one-page-profiles, a resource to help anyone working with children or young people to get to know them better.

These one-page-profiles ask three key things, and the order and priority given to them are really important:

What do people like and admire about me?

This is such a great place to start.  It sets the right tone from the outset and creates a positive narrative about the child or young person, a ‘child-centered’ narrative rather than a ‘problem centered’ one.

By identifying and listing all of the positive attributes of the child we see them more fully, we see the things about them that are fulfilling, the positive things that them being a part of our group bring and what we would all miss if they weren’t there.

It is affirming and constructive, completely changing the way we continue to think about and respond to them.

What makes me happy?

Again, this is really important to know.  If we get to know what makes a child or young person happy then we can get to know them better through those things.

We see them more broadly, as an animal lover, or someone who likes to play with Playdoh and enjoys exploring the sense of touch, as someone who likes technology.

We can also use those things to help us enable them to take part in the group activities, utilizing their favourite things to engage them and keep them interested and focused

How I want to be supported.

This is the final section, and the words used are deliberate and helpful.

Instead of the typical ‘Does your child have special/addition needs, please describe them here’ type of question that we still see on far too many registration forms, this is different.

Firstly, it isn’t a question at all, it’s a statement; it’s person-centered “How I want to be supported”.

Secondly, it talks about what that support needs to look like; that puts the emphasis right back on us to provide that support, for us to adapt rather than the child.

That’s the right way around!

Using a resource like these one-page-profiles helps us to get the order right when we’re thinking about a child or young person; to prioritise them, not us.

It guides our thinking to the positive attributes for that child, which may or may not have anything at all to do with their disability.

It leads us to consider the things that make them happy, again whether this is connected to their disability or not.

And it helps us to understand the things we can do to support them; I’ve recommended using these simple resources for all children and young people, there are loads of different styles, as we can find out so much more about every child that we work with through them.

Perhaps using resources like this will help change the narrative for children and young people; will help us to understand them as individuals, not labels; will change the perception of children and young people with additional needs or disabilities from being a ‘problem to solve’ to being ‘a child to serve’.

When we see each child as a child first, and a disabled child second, then we see them the right way around!

#AChildFirst