Coping with the Christmas Chaos

It’s Christmas!! Those two words seem to divide the nation even more than Brexit has, with people falling into one of two ‘camps’…

Either you started wearing your Christmas jumper in October, had your decorations up in November and have already watched ‘Elf’ 12 times this season, or you feel like King Theoden in the Lord of the Rings movie “The Two Towers” right before the major battle at Helms Deep when he grimly says, “And so it begins…”.

There’s even a Christmas meme for that!

However you feel about Christmas, the one unavoidable fact is that for a few crazy weeks everything is different; it’s all change and it is unlike any other time of the year.

Everywhere you look there are masses of twinkling lights, stores are full of completely unnecessary Christmas gifts, and it’s suddenly OK to play Slade, Wizzard and Shakin’ Stevens songs once again!

We drag trees into our houses, light candles, eat food we never eat at any other time of the year and see people we’ve ignored since last Christmas.

And we’re in nativity season too!

A stress fuelled time of rehearsals, costumes, children trying to learn their parts, performances, tears and tantrums (and that’s just the adults!)

Most schools get theirs done towards the end of term, while many churches have theirs to do over the weekends leading up to Christmas itself.

Tensions are running high, no one can find the stuffed sheep, the star is looking a bit crumpled, and someone has to tell little Jack that the actual shepherds didn’t wear Spiderman dressing gowns…

It can all be a little overwhelming for most of us, but for many children with a wide range of additional needs it can all just get to be too much.

It’s peak season for meltdowns, with children unable to cope with so much change.

So, how can we help our children, and ourselves, to navigate a safe route through the festive fun? How can we all cope in the chaos of Christmas!

A little bit of preparation can go a very long way… thinking ahead, getting some plans in place, equipping our children and ourselves to be able to cope with all of the changes ahead, can make a really big difference to whether we survive Christmas unscathed or not.

Here’s a few things we can all do to make a difference:

Visual timetables

Having a visual timetable or schedule for each day in the run up to the end of term and then through the holiday period and for the first few days back in January can be really helpful, enabling children to know what’s happening, what to expect, what’s expected of them, equipping them to be able to cope better.

You can find an example here: http://www.take5andchat.org.uk/resources/

Being equipped – shopping survival pack

As additional needs parents, we tend to pack for a three-month arctic expedition when popping to the shops anyway, but making sure we’ve got everything we need if we take our additional needs child out at this time of year is essential.

Ear defenders? Tick. Snack? Tick. Drink? Tick. Favourite toy? Tick. Backup favourite toy? Tick. Sunglasses? Sunglasses??

Yes, they can help reduce the glare of the lights and help children who struggle with having to make eye contact. Tick.

What does your child’s shopping survival pack look like? There is some more helpful shopping survival information for you here: https://www.autism.org.uk/about/family-life/everyday-life/shopping-strategies.aspx

Pick your times

If you have to take your child to the shops with you, and you’ve got your shopping survival pack with you, carefully choose when you actually go to the shops…

Early in the day or in the evening if you can, avoiding weekends and days like Boxing Day when the sales start.

Some stores are holding special ‘Autism Hours’ which offer quieter shopping sessions, sometimes with reduced lighting and also with additional support if needed; it’s worth checking with your local shopping centre to see if they are running these.

Don’t forget to recharge

During the Christmas period it can be easy to pack our diaries with activities, visits to friends and family, feasts and fun, but we all need some recharge times too, especially children with additional needs.

Schedule in some quieter days, a long lie in if that works for you, chillaxing in front of the TV, or maybe a gentle stroll in the countryside or along the coast.

You know what works for you, but you might need to block those days out in your diary now, so they don’t get used for a visit to the in-laws instead!

Get support, and get time out

A long school holiday can be really hard work for those of us that are caring 24/7 for a child or children with additional needs.

Even your recharge days will involve lots of care and support for our children, and we need to make sure we don’t completely neglect ourselves during this time.

It’s peak season for illnesses of various kinds, and exhaustion and neglect can weaken us and make us more susceptible to bugs.

Is there someone who could look after your tribe for a few hours while you look after yourself? Maybe go and get pampered, or go to the cinema or out for a quiet meal with your partner?

It’s not wrong to look after yourself a little, and maybe you can do a trade where you repay childminding one day with you looking after their children another day?

Hopefully these tips will get you started on your own plan to help you to survive the Christmas chaos…

Each of us is different, so our plans will reflect our differences, but if we put some thought and preparation into this now, we might just survive and get to the other end in one piece!!

Now, where’s that backup Winnie-the-Pooh…

A Letter to Our “Other” Child

Those of us that are the parents of a child with additional needs, or who support a child with additional needs, so often put so much of our time, energy and focus (and rightly so) into helping that child or young person to thrive, to engage with the world, to develop as fully as possible, to be a part of all that we do…

It can become all consuming, demanding much of our conscious and unconscious energy as we do all that we can to make a difference.

But for many of us, our child with additional needs or disability is not our only child. We may have another child, or several others, all of whom need love, nurturing, care and support. In our case we have Phoebe, who at 19 is two-and-a-half years older than James and has grown up for most of her life in a home that includes a child with significant additional needs, and all that that brings.

This is an open letter to Phoebe, and to all the brothers or sisters of children with additional needs or disabilities…

“Dear Phoebe,

We love you, you are very, very precious to us and we are enormously proud of you for being the fine young woman that you have grown into.

This simple letter is just a small way of acknowledging all that you do, often unnoticed and sometimes unthanked, to support your brother and us…

You have often been a junior carer for James, helping out with a range of support tasks that help to keep the wheels on our particular family bus. You are great at spotting when James is starting to get distressed about something and you either let us know or, usually, will just deal with things yourself.

You’ve cleaned up stuff that you would rather not see again (but probably will), you’ve got up to come to help in the middle of the night if James is having a meltdown, you’ve watched endless episodes of Postman Pat or Percy the Park Keeper with James, helping him to choose the next video to watch.

You’re also great at calling us out when we’re letting James off lightly for something he’s doing that is less to do with his Autism and more to do with being a 16-year-old who is pushing boundaries!

But you’ve also missed out on a lot of things that many young people take for granted.

The times we’ve had to skip going to something, or come home early, because James is struggling… Going out as a family is that much harder when an unpredictable younger brother may do something that either means we have to abandon our plans or keep within a small set of activities that we know James can cope with. We can’t just decide to go out to the movies, or for a meal, on a whim as most families can!

We tend to invite people around to our house rather than visit, generally because it’s easier for James when he has the familiarity of his own den, his own things, and we’ve got everything we need to support him; whereas you might have liked to go somewhere different, anywhere different, for a change!

Even family holidays can prove unpredictable, with a simple trip to the beach or to some gardens being fraught with uncertainty!

As parents, we were able to understand a little better at diagnosis what having a child with additional needs would mean (although in reality we still had everything to learn!) For you, who were five at the time, it just meant your brother was a bit different to the brothers and sisters of your friends.

As you grew up you noticed the differences more, asked more questions, learned more about your brother, were affected more by living with him.

In all of this, you have rarely complained (although you have your moments!), you get on with life and the challenges that being the sibling of a brother with additional needs brings.

There are times when you mention that all of our time and energy seems to be focused on James, and that you don’t get enough of our time and focus, and that’s something for us to do better at… to learn from and to change.

But we are so incredibly proud of you, Phoebe, for the well-rounded, caring, thoughtful, intelligent young woman you have grown up to be.

There are many thousands like you across the country, who quietly cope while their brother or sister is having a difficult day. Thank you for being such a wonderful daughter and such an inspiring and caring sister; we love you more than we sometime show, and more than you will ever know.

With love,
Mum and Dad”

Whether we parent more than one child, or whether as children’s and youth workers we care for them in other ways, let’s celebrate what a wonderful contribution they make to the world, how hard it can be for them sometimes, and make sure that we love, nurture and care for them, thanking them for all that they do.

Tuts, Looks and Loud Comments

Heartbreakingly, at least 60% of children with additional needs are bullied (source: Ability Path).

With some 2.5 million children and young people in the UK having an additional need of some kind, that’s 1.5 million who have experienced bullying…

One is one too many, 1.5 million is an absolute outrage!

When we think about childhood bullying, the stereotypical environment is bullying at school or in the street. We may also think about online bullying, a huge problem for many children today.

But do we think about where else children with additional needs, and their families, are being bullied? It can happen anywhere, in the supermarket, in the cinema, in the park during a family day out… anywhere!

Surely as a society we should be more understanding, more tolerant, treating everyone with respect, however this is often very far from the case.

Bullying of children with additional needs, and their families, happens all too often…

There are lots of ways that these families, and their children, are treated badly, sometimes bordering on and stepping over the line into bullying, and it isn’t possible to include them all here, but these poor behaviours can often fall into three areas, all linked, but all very hurtful…

The ‘Tut’

A sound that is so short, but which can leave a lasting impact.

People tut when they disapprove of something, or someone; when they wish to show distaste or dislike.

A ‘tut’ can be like a dagger to the heart of a family of a child with additional needs. It condemns, it judges, it articulates opinion in a cruel and harsh way.

When trying to support a child who is overwhelmed and having a meltdown, the ‘tut’ says to parents “You have failed to control your child and now you are inflicting their issues on me, and I disapprove…”.

That simple sound can be so hurtful… but it is often accompanied by…

The ‘Look’

A harsh stare often follows the ‘tut’; a glowering, accusatory, frowning, purse lipped look that make families with children with additional needs want to hide from the glare.

It reinforces the sense of helplessness and hopelessness that the family will be feeling as they try to help and support their child, just at a time when what they really need is kindness and understanding.

A friend of mine who experiences this all too often refers to people like this as ‘The Meerkats’

She says that when her son is having a meltdown in public, all the heads swivel round and stare at them just like the meerkats do.

She makes fun of it, but there is a serious and hurtful intent to these looks… and then often the third part of the bullying ‘triple whammy’ comes swiftly along…

The ‘Loud Comment’

After the ‘tut’ and the ‘look’ often comes the loud comment, ostensibly aimed at someone nearby, but made loudly enough to be heard by the family (and probably everyone else within earshot!)

It can frequently start with “Well…” and continues with something like “if they can’t control their child they shouldn’t bring him into the supermarket…” (control is just about the last thing possible during a meltdown).

Or “I wouldn’t put up with bad behaviour like that in the cinema if she was my child” (this isn’t bad behaviour, it’s could be a response to sensory overload).

I could add many other examples here, perhaps including the ‘Smug Smile’ when the family drag their distressed child out of the shop/cinema/play area etc. so that they aren’t subjected to any further abuse.

Many of us have been there, seen people do one or all of these things, seen the impact it has had on families and their children, on us.

Does it break your heart? It certainly breaks mine…

We need to be better than this, to model a better way, to make a positive difference to that statistic. It needs change, change to come from the top, from those with positions of responsibility in our communities and in society as a whole.

Good responses need to be praised and poor behaviour needs to be challenged. If someone lit up a cigarette in the middle of Tesco’s they would soon be told to stop… we need the same challenge to be given to someone bullying an additional needs family.

We need to see the ‘tuts’ turned to offers of support and help, the ‘look’ to become one of friendship and encouragement, the ‘loud comment’ to be “how can we help you?”

So, let’s follow this approach, let’s not wait for it to just happen but let’s lead it ourselves, and let it change us, change society, and change the experience for many families with children with additional needs…

Autism, Epilepsy and the one-in-three Chance of Both

Epilepsy Awareness Month is during November and this will be only just over a year-and-a-half since James, our 16-year-old son, added Epilepsy to his growing list of conditions that already included Autism and Learning Disability…

It’s been quite a last 18-months, quite a journey, as we’ve rapidly learned about a condition that we knew very little about before.

But let’s start at the beginning, mid-March in 2017, when something “unusual” happened with James at school… I remember the ‘phone call well, it was early afternoon and I was at a work meeting about 100 miles away from home. In the middle of the meeting my mobile ‘phone rang, the name of James’ school showing as the caller; I apologised to my colleagues and rushed out of the room to take the call.

“Something unusual happened with James just now”, the teacher calling me said. “It’s like he totally zoned out for about 30 seconds, his eyes were open but there was no response. Like the lights were on but no-one was at home, then all of a sudden, he was back with us again. He seems fine now.”

They kept an eye on James for the rest of the afternoon, he seemed fine and travelled home on the school mini-bus quite happily.

There were no further episodes, so it all was put down to James just ‘having a moment’ and was quickly forgotten… We now know that what James actually experienced was an ‘absence seizure’, sometimes called a ‘petit mal’ seizure, a form of epileptic event, but more of that later…

Time passed, summer came and went (all too rapidly!), and autumn arrived. One mid-October morning, we had helped James get up and get dressed; he was chilling out in his den while I went to the kitchen to get him some toast and a drink.

When I returned just 2-3 minutes later I found James having a full tonic-clonic epileptic seizure, sometimes called a ‘grand mal’ seizure.

The sort of seizure someone who knows little to nothing about Epilepsy (which was us) thinks of as an ‘epileptic fit’. He was lying down, rigid, jerking, losing consciousness and dribbling. It was probably the most frightening experience of my life, I am so thankful that James remembers none of it.

The paramedics were there within minutes, while a very kind 999 operator helped me to keep calm and gave me things to check and do to make sure James was breathing properly, that he was safe from banging his head, and that I didn’t pass out too. James came round again within a few minutes, and although he then slept for much of the rest of the day, he recovered fully.

We were then on the journey to find out what had happened, and why…

It turns out that Autistic children are much more likely to develop Epilepsy than their non-Autistic peers, with studies showing that up to (or even over) 30% of Autistic children also develop Epilepsy (in comparison to about 1% of non-Autistic children). Two key times when this can commonly occur is in the pre-school age (James missed that one), and in adolescence (James got caught then).

In talking all of this through with James’ Neurology Consultant, it became clear that James’ absence seizure in school, as we only then understood that it was, was linked and perhaps his first epileptic episode. We also discovered that when James occasionally ‘jerks’ or ‘twitches’, it’s not him just shuddering or shivering, it’s a ‘myoclonic jerk’, another form of epileptic event.

We’re still novices in this area, but we’re learning fast!

Since this started, James has had eight tonic-clonic seizures, mainly in little ‘clusters’ of two or three over a few days, often when he is unwell and overtired. We’re getting used to knowing when to be looking out for more ‘myoclonic jerks’ or ‘absence seizures’ during these times too.

So, this Epilepsy Awareness Month, have a think about your child or adolescent… Are they Autistic? If so they are up to 30 times more likely to develop Epilepsy too. Have they ever zoned out, gone blank for a few seconds? Do they sometimes twitch or jerk without reason?

Understanding these signs and seeking better awareness and knowledge of Epilepsy will help you and your child.

eek professional medical opinion if you are at all concerned, but don’t ignore any signs… the unexpected sight of your child having a full tonic-clonic ‘grand-mal’ seizure for the first time isn’t one you’ll forget in a hurry…

Let this month be an epilepsy awareness month for you.

Halloween and Children with Additional Needs

Halloween is a time of the year that many children really look forward to, a time for fantasy and fun, a time for dressing up and scary stories, a time for ‘trick or treat’ adventure and lots of sweets!

The marketing around Halloween seems to ramp up to even greater heights every year, with major supermarkets dedicating whole isles, sometimes several of them, to their Halloween merchandise.

Advertising supports this with lots of TV adverts featuring ghosts, ghouls, pumpkins and spiders’ webs. Then there’s the BBC Strictly Come Dancing ‘Halloween Special’!

But while this is a fun time of year for many children, it can be a really difficult time for some, including many children with additional/special needs.

For them it can be a confusing, anxiety inducing, or even utterly terrifying time.

But it doesn’t have to be like that; if we stop for a moment to think about the things they might find hard and how to put things in place to help them, they can safely join in the fun too.

So, what are some of the things about Halloween that children with additional needs can find hard:

Stranger Danger?

We tell children all year not to talk to strangers, then on one night it’s suddenly fine to go around knocking on strangers’ doors. This can be hugely difficult for some Autistic children, for example, who are often very literal in their understanding and can be very confused by this.

Why is it OK to speak to strangers today but it wasn’t yesterday? What has changed? What will the rules be tomorrow? Why?

Fake or Real?

The more garish dressing up can be genuinely terrifying for a child that struggles to tell the difference between fake and real. Increasingly, we’re seeing dressing up outfits becoming more realistic with fake gore that makes people look truly terrifying.

When that line is crossed for a child that believes that the person really has hideous injuries or has been turned into something evil, theirs is the terror that is real.

Cue massive meltdowns, sleepless nights, and recurring anxiety.

I’m Scared Enough Already!

Talking about anxiety, some children with ongoing anxiety issues can find the whole business of going out ‘trick or treating’ very upsetting. Surprises, scares, people jumping out, can all be terrifying.

If it’s hard to deal with the day-to-day anxiety that they face about going out on a regular day, ramp this up multiple times when Halloween is involved.

What About Me?

Then there are the kids with additional needs or disabilities that don’t get invited to parties or to go ‘trick or treating’ because they are different.

Here’s another opportunity for them to feel left out, rejected and uninvited because they haven’t been included… again.

Parent Problems!

It’s not just the kids. Parents of children with e.g. ADHD may not find their children being given loads of sugary sweets very helpful when they are up all night with a hyperactive sugar fueled child!

There are loads of other reasons beside these, but there are also ways to make Halloween easier for children with additional or special needs so that they can join in too…

Here’s a few ideas:

Prepare them in advance, giving them a visual timetable of what is going to happen, how and when.

‘Prime’ some friendly neighbours who are known to your child and that you can visit safely with your child knowing that they won’t do anything too scary or surprising.

Choose less gory and blood-soaked outfits. It’s more about the dressing up than who can look the most terrifying and there are plenty of options to choose from.

Choose sugar free sweets, or better yet try some healthier snacks themed around Halloween (satsumas as ‘mini pumpkins’ for example).

If you are hosting a party, think about who might be left out and make sure you invite them.

Have fun but keep checking on how your child is feeling.

If they are struggling, have something that they love doing ready at home, so that you can easily return to that and help them have fun in a different way (carving pumpkins – they don’t have to be scary, making pumpkin mini-pies, decorating a jar to put a battery night-light in, apple bobbing, toasting marshmallows…)

I hope that Halloween is a spook-tacular success for you all this year, especially for those of you with children with additional needs!

Answering Children’s Questions About Additional Needs and How Winnie-the-Pooh Helps

A question I get asked loads of times is this; “How can I explain additional/special needs to children?” The answer depends on the context, as there are different ways that this can be responded to, determined by who the answer is meant for.

Are we responding to a question from a child with additional needs themselves? “Why am I different?” Are we responding to a question from other children “Why are they different?” Or are we trying to figure out an answer to a question we’re asking ourselves “Why is my child different?”

A starting point as we try to navigate a path through these questions is to grapple with a rather large issue; what is “different”?

All of the questions above have been, rather crudely I admit, couched in a way that includes the word different. The questions are all based on questions that I, and I’m sure many of you, have been asked many times. But what is “different”? “Different” to what, or to who?

We are all different, unless we have an identical twin, so there is really no such thing as a “normal” person to be different to; we are all different to each other.

So where is the line drawn that causes us to ask the questions in the opening paragraph? Is someone considered to be on the other side of that line if they have red hair? Or one green eye and one brown? Or are under, or over, a certain height? What about if they have a birthmark?

Hopefully we have moved on from the time when people would be stared at and thought to be “different” because of the colour of their skin, although there are still recent stories that suggest this is not entirely the case yet.

So where is that line, who gets to draw it, and why should children with additional needs or disabilities find themselves on the “wrong” side of it so often? On the side that isn’t “normal”?

One suggestion I give to people trying to explain this to children is to gather them together and ask them what is different about them compared to the rest of the group; encouraging them to include affirming differences such as “I’m good at football”, or “I collect unicorns”, as well as things that are physical differences such as “I’m taller”, or “I have freckles”, for example.

Then ask them if they can remember a time when they have needed a bit of extra help or support, prompting them to remember the time when they fell out of a tree and broke their arm, or when they were sad because their pet had died, or when they were poorly.

It is then easier to help them to use these examples to better understand that everyone is different, none of us are “normal”, there is no such thing!

And all of us have times when we need a bit of extra support or help, whether we have an additional need or disability, or not. Helping children to understand this through their own experiences will help to give them a reference point for them to be more accepting of others.

It can also be helpful to think about a group of popular children’s characters and discuss the differences between them.

The characters in the A.A. Milne Winnie-the-Pooh stories are a great example for younger children, with very different characteristics, abilities and attributes to be found in the various characters in the Hundred Acre Wood.

Tigger is very bouncy and confident, while Eeyore is quieter and likes being on his own. Owl is very wise, while Roo, being younger, still has a lot to learn. Every one of them is different, as are we all.

The hardest question can be the one from a child themselves… “Why am I different?” Perhaps what they are really wanting to know more than anything else is whether their perceived “difference” affects the way we might feel about them… especially if they have experienced rejection at school for example, due to their additional needs.

The question that might be in the deepest darkest corner of their breaking heart might be “Do they still love me?”

To which possibly the best response it might be possible to give comes, with a little adaptation, from the pen of A.A. Milne, through these words from Christopher Robin to Winnie-the-Pooh; “Promise me you’ll always remember… you’re braver than you believe, stronger than you seem, smarter than you think, and loved move than you know.”

Maybe that’s the best answer we can give to a child who asks us that tough question, and by not just saying it but living it with them we can help them face whatever challenges lie ahead together.

As A.A. Milne once again puts it so well… (Piglet:) “How do you spell love?” (Pooh:) “You don’t spell it, you feel it.” I think, perhaps, we can all agree with that!

Surviving The Diagnosis

The road to acceptance can be a long one for parents of children with additional/special needs or disability. Some reach it quicker than others, some struggle to get there at all. There are many stops along the way where we can get ‘stuck’…

Pre-diagnosis – worry

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?

Eventually, we ask, or someone else asks, and we start to find out… and it can take ages!

In our case, we noticed that James was not developing as fast as his sister had. At first, we put it down to boys not always developing at the same speed as girls. Then we had some hearing tests done (which James initially failed spectacularly… until we realized he had an ear infection at the time!) Bit by bit things got ruled out until we finally got a diagnosis.

Diagnosis – shock

What does this mean? We don’t understand… So many questions… 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 and dreams 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…

When we received James’ diagnosis, he was only 2½ years old. It was a hammer blow to us all as we tried to understand what we had just been told; that James has Autism and associated Learning Disability.

Looking back now, we realise that we were experiencing grief…

Parents of children with additional/special needs or disability will experience this grief too, going through the various stages, maybe getting stuck on one of them (‘denial’ for example). Sometimes, just when you think you’ve made it to ‘acceptance’, something happens that spins you back to the beginning all over again…

Five stages of grief

Denial/isolation – overwhelming emotions, 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…

Anger – reality and the pain of the diagnosis breaks 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…

56% of families with a disabled child have major or significant relationship difficulties or breakups.

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…

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.

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…

Where are we going?

Italy or Holland? We have experienced a change of destination, we’ve ended up somewhere we didn’t expect, or initially want, to go – how will we respond? How will it affect us?

How will it define us?
Will we let this diagnosis be a negative drain on our lives? Stuck at ‘Denial’? ‘Anger’? ‘Bargaining’? ‘Depression’? So many are still there… where are you? Or will we use this diagnosis as a positive inspiration for our lives? Having reached ‘Acceptance’? Embracing what is, rather than what might have been?

And if so, think about how… What are you going to do? How will this define you?

We do not go through this alone; if we have faith, then God stands with us. As he said to Joshua, he says to us: “Be strong and courageous. Do not be afraid or terrified… for the Lord your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

I choose positive inspiration!

Me? This is James, and because of him I choose positive inspiration, I make a stand for it, that’s why I do the work I do… working full-time in additional needs ministry with Urban Saints and co-founding the Additional Needs Alliance.

I will not stay in denial, it will not define me.

I will not stay angry, it will not bind me. I will not keep bargaining, I will face the truth. I will not permit depression to hold me, it has no power over me now.

I choose acceptance, I claim it. I choose positive inspiration, for my son’s sake, for my family’s sake, for my sake… I am surviving the diagnosis…

Will you join me? Will you join me??

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Blessings,

Mark

Posh Brands, Designer Labels and Additional Needs Parenting

I was sat in a café a few Sundays ago, a brief oasis of calm in an otherwise hectic and unpredictable week of additional needs ministry and additional needs parenting.

The tea was great (I’m not a coffee drinker!), which was helpful, as I was tired and in serious danger of dropping off to sleep otherwise… there could have been snoring… #awkward

During a pause in sipping and munching (there was also cake, obviously), as I glanced around the café from my seat positioned towards the back, I noticed someone a few tables away from me who was wearing a nice embroidered floral top.

What I noticed, however, was that embroidered in large letters across the back of the top, between the shoulders, was the brand name… ‘Joules’.

I didn’t recognise it and wondered if it was her name, however I understand from those who know about these things that this is a ‘posh’ designer label.

That got me thinking… why would the brand name be embroidered like that on the back of a garment?

The only conclusion I could come to was that it is a status symbol, making a statement to anyone looking at it…

“This is a posh brand, a designer label that I can afford to buy.”

I started surreptitiously looking around a bit more then, and noticed others wearing garments with ‘posh’ brand names and designer labels prominently displayed, some that I didn’t even need to ask about!

Now don’t get me wrong, I’m not against people making an effort when they go out, I just got to wondering about how what we wear, what we look like, might even inadvertently categorise us in some way in the eyes of those who see us, placing us in a particular ‘clan’ in their eyes?

People have dressed to make a point as long as clothes have existed.

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

As all of these thoughts flew through my mind, I glanced down at what I was wearing.

For the first time I noticed the smear of food that James, my 16-year-old (ASD, LD, Epilepsy) had wiped across my trousers before I went out, and my first thought was that I was glad that it was only food!

I got thinking about what the ‘brand identity’, the ‘designer label’ of the additional needs parent might be… possibly it’s crumpled smeared clothing, an unusual difficult to place smell, the latest look in the ‘exhausted’ range?

We must sometimes look a bit of an unusual sight!

But it occurred to me that the important thing is what we do, not what we look like.

We give our lives to serve our child, and that is what really matters.

Those words spoke to me, and I hope speak to you as you read this if you too are an additional needs parent…

It really doesn’t matter that much in the great scheme of things what we might look like sometimes, just being somewhere (café, work, the school gate, wherever…) might be an achievement in itself.

As a friend recently said to me “Getting up and having clean knickers to wear is sometimes a bonus… it’s the little things!”

The ‘brand identity’ and ‘designer labels’ of the additional needs parent do not need apologising for, they speak of our love for our child, our willingness to put them first, our never-ending endurance as we strive to do the very best we can for the child that is our first thought as we wake and our final thought as we (eventually!) drop off to sleep.

These are the labels that we are given to wear, and I will happily have that embroidered across the back of my clothing, alongside the smears, any day!

Can You Take Young People With Additional Needs On Overseas Mission?

Going on an overseas mission trip can often be a transforming and life changing experience; offering an opportunity to serve in a very different culture and environment, challenging our worldview and our perceptions of our role in the world.

Taking young people on a short-term mission trip experience can equip them and inspire them for a lifetime of service, or at the very least cause them to think critically about the consumerist ‘it’s all about me’ culture that we live in.

But why should transforming overseas mission experiences like this be only for so-called ‘mainstream’ young people?

Why shouldn’t everyone, including young people with additional needs or disabilities, be able to experience trips like this too?

So often, young people with additional needs are excluded from overseas mission trips like this unless they are accompanied by a parent or carer, but is that the only way that all young people can be included?

I recently had the great privilege of taking a group of young people on a 10-day short-term mission trip to South Africa.

12 of us, including 10 young people, a female leader, and myself, joined with groups from across the UK totalling 120 together to build homes and hope for disadvantaged families in a township, work with the local children through a kids club, and to see the young people blossom, grow, and be transformed by the experience.

Included in the group was an autistic young person for whom this was their first experience of being overseas away from their family.

What sharing this journey with this young person taught me is that anyone can go on a short-term overseas mission trip, and that doing so can be a really valuable and inspiring step in the development of a young person with additional needs, just as much as it can be for anyone else.

There are many ways that a young person with additional needs can be supported to participate in a short-term overseas mission trip.

My journey with Timmy* has helped me to understand these better and so I share some of these learnings with you as I ‘think out loud’ about this for the future:

Planning and preparation

It is important to know as much as possible about a young person with additional needs before the trip starts.

What are the things that they are likely to find difficult?

What triggers might there be that can lead to them struggling to cope?

What support can be put in place to minimise these potential flash points and what strategies might we need to have up our sleeves to help the young person if they become overwhelmed or anxious for example.

Good, open conversations with the young person themselves, and the adults that care for them at home, can help us to create a profile of the young person, their needs, and how to support them, long before we travel.

Daily/weekly schedule

Right from the beginning of the trip, it was important to provide information about the schedule for the next few hours, the day, the rest of the week.

What is happening now, what is next, what is later.

By breaking the trip down into bite-sized chunks it was much easier to provide the support needed for each stage of the trip.

It also helped the young person to be able to focus on the next thing, rather than being overwhelmed by thinking about everything in one go.

A learning for next time will be to provide some better resources to aid this, including a day-by-day timetable with photo’s (and possibly symbols if required) to give to the young person.

Having this information clearly displayed in the accommodation and at the work site will also help.

We were in Africa, so scheduling and timings were a little fluid, but some key points in the day remained fairly fixed and provided a base for the rest of the programme.

Providing a ‘safe space’

At the accommodation (based on a converted farm), the young people could get away from it all for a bit by going to their dormitory, and there were plenty of other quiet safe spaces that they could access if the dormitory was busy and noisy.

At the work site, we identified a quieter safe space that could be accessed as required.

It enabled the young person to be able to get some calm time away from the noise and hubbub of the work site when they needed it.

Identifying specific roles/jobs

Not all of the tasks on the work site were ideally suited to a young person with additional needs, so it was important to identify some specific jobs that were within their ability, while still stretching them a little with new things to do.

Sometimes the young person was able to get involved in the tasks the other young people were doing, like applying a cement plaster/stucco to the walls of the house, working alongside their peers; sometimes the young person needed an individual job that they could do at their own pace such as a litter pick around the site, or cleaning the tools.

New skills were developed, a good contribution was made to the project, while not overloading the young person.

Regular check-ins

Making sure that we regularly checked in with the young person, several times a day at key moments, ensured that any issues were caught early.

Trust developed through the building of relationship which enabled the young person to discuss how they were feeling when things were tough, allowing us to provide better support.

Listening was really important, making sure that the young person had the time to say how they were really doing; even making eye contact across a room, with a little nod meaning “I’m OK”, was important.

As a result, although the first few days of the 10-day trip were sometimes difficult, the rest of the trip saw the young person flourish and do really well.

Buddies

Ensuring that the young person had another young person, a friend, with them in their dormitory that could help them, check that they were OK, help find things that they had mislaid, remind them when it was time to get up, go to meals etc. was invaluable.

Having a ‘buddy’ nearby also provided us as leaders with an early warning system if anything wasn’t going well.

Flexibility

Sometimes there needed to be some flexibility to any rules or guidelines that were in place.

For example, while we generally discouraged the young people taking technology to the worksite e.g. iPods, mobile phones etc. we realised that for some young people with additional needs being able to shut out external noise by listening to some music and/or using ear defenders was essential.

As a result of this understanding of the needs of some young people, we were able to provide some flexibility to these guidelines and support the young people much better.

Celebration

Throughout the trip, there were opportunities to celebrate the progress the young person had made.

It might have been little things like successfully completing a task, or bigger things like contributing something that had helped the whole group.

Celebrating a successful day, the end of the project, or the trip as a whole all help build the young person’s self-worth and confidence, which helped give them positive experiences to look back on when things were harder.

Prayer

It was important never to underestimate the power of prayer.

Taking a young person with additional needs on a mission trip totally outside of their comfort zone, to the other side of the planet, needed strong prayer support.

Having a team of people praying throughout the trip was essential to its success, and knowing that we could send some specific prayer points for immediate support made all the difference.

Post-trip Review

Mission trip experiences don’t stop the moment we get home; the memories, the physical impact of all the hard work and lack of sleep, the emotions of working in often difficult environments, all continue on for a while.

It is important to check-in with the young people to see how they are doing, are they experiencing any difficulties associated with reverse culture shock, and to provide some support as appropriate.

This is particularly necessary for any young people with additional needs who may struggle to regulate their feelings and emotions.

There are lots of other learnings from this short-term mission trip to South Africa; things that we will do better next time, things that will ensure that more young people can engage in a life-changing, transforming, experience like this whether they have additional needs or not.

Of the many significant moments that the young person with additional needs we took on mission this year contributed to the trip, perhaps their greatest legacy will be the trail that has been blazed for others to follow.

“Unless the Lord builds the house, the builders labour in vain…” Psalm 127:1a