How Happy Haircuts Happen

We are all sensory creatures, exploring, understanding, and engaging with the world through our many senses. This is just as true for someone has additional needs as it is for anyone else.

Sometimes we can be under-responsive (or hypo-sensitive) to sensory inputs. At other times we can be over-responsive (or hyper-sensitive) to sensory inputs. You can see some of the effects of this in the picture of the person below, used to illustrate different kinds of sensory processing disorder. One of the examples given is, “I hate having my hair cut, washed or brushed”.

Haircuts can be a very difficult experience for children and young people with a range of additional needs. The sensory feeling of the hair being cut; the bits of hair going down their neck or landing on their face, the noise of clippers (especially around their ears), or just the very difficult feeling that a part of them is being cut off and is now on the floor!

Set calming conditions for haircuts

In our case, our son James will only tolerate having his hair cut under very specific conditions. His need for a haircut having reached the point where it was unavoidable any longer meant that those conditions needed to be met a couple of days ago.

The conditions are that James must have his hair cut on his sofa, which is his favourite, safe, place. Next, I must be the barber, and his mum must assist by collecting all the bits of hair up as they fall. We use clippers, grade 4 all over, the only style I can do. James has something that he likes on his iPad as a distraction while the haircut is done. Mum must make sure that any bits of hair falling on the iPad are removed immediately!

The danger zone

We start at the back, out of sight, to get used to the clippers again. And then do the front, leaving the difficult part around the ears until last. When the rest is done and only the hair around the ears are left, I am always nervous that James will refuse to go on and will have the weirdest hair style in town! With the soundtrack to the film ‘Top Gun’ in my head, we take the clippers into the ‘Danger Zone’ around the ears!

Usually there comes a point when the worst is over and it’s just a matter of tidying up. Checking that the two sides are level, that the back looks neat, and that I haven’t missed any wispy bits. If we don’t finish these areas then it’s not the end of the world. But usually with some encouragement, and the reassurance that we are done with the ‘Danger Zone’ then we can finish off.

Lots of positive praise

A bath straight away afterwards to help remove any scratchy clippings is helpful and then we are done. We give James lots of positive praise for coping so well. A reward of his choice, and then showing him how much smarter he looks, usually gets a smile!

Routines are important. When followed well, can help to ensure that even difficult experiences like haircuts can be coped with and completed well. We only cut James’ hair every three to four months. There is plenty of time for any imperfections to ‘grow out’ and for him to be ready to accept the clippers again!

What haircut stories do you have? How do you support your child or young person when they need to have their hair cut?

Keep snipping!

Sensory Spring Fun

The Easter school holidays are coming up fast, so here’s some fun sensory ideas to try with your children to help them think about spring!

Sight

Spring is the time when all the wildlife wakes up after the winter. If you have a garden or can get to a local park, you will be able to find all sorts of creatures. From creepy-crawlies hiding under stones to beautiful birds, and maybe some animals like a squirrel or a fox. See how many different creatures you can find and try drawing a picture of them to help you remember what they looked like. The Wildlife Watch website might be able to help you identify what you’ve seen: https://www.wildlifewatch.org.uk/wildlife-zone/identify-wildlife

Hearing

Depending on where you live, you might be able to hear birds singing. This can be increasingly common in the spring. If you have a local park, or if birds visit your garden, listen to hear their songs. How many different ones can you hear?

If you want to identify what birds you heard, or if you can’t hear the birds near you because of other noise, here’s the RSPB ‘Bird song identifier’ website that can help you!
https://www.rspb.org.uk/birds-and-wildlife/bird-songs/what-bird-is-that/

Smell

Either in your garden if you have one, or in a local park, find some spring flowers. There are likely to be crocuses, daffodils, maybe even some tulips. Smell their scent and enjoy how lovely it smells. How many different flowers can you find? Take photos of them so that you can remember them all. To help identify what flowers you have found and smelled, the Royal Horticultural Society (RHS) has a website which can help: https://schoolgardening.rhs.org.uk/Resources/Spotter-Guide/Spring-flower-spotter

Touch

While you are out in the garden or the park, can you find some different things to touch, like a piece of bark, a pinecone, a smooth stone, a snails shell, a dandelion, or some grass to stroke. Try and find as many natural touch sensations as you can. You could also have a go at the ‘Spring Guess? Bags’ idea here: https://simpleplayideas.com/sense-of-touch-activity-touch-of-spring

Taste

Once you’ve got back indoors from your spring adventure, maybe you could try some taste activities too. Have a selection of different taste sensations, something sweet, maybe some Easter chocolate or some honey. Something sour, maybe a lemon or some sour Haribo’s. Something salty some crisps or snacks. And then something savoury, some cheese. Have some different fruit and veg options in there too. What taste sensations do they prefer? Here’s a simple tasting exercise that might help: https://www.patiencefruitco.com/en-us/the-patience-club/tasting-exercise/

I hope you have fun exploring Spring through your senses together!

Life Isn’t Always Fair

Have you ever felt like Nobi, the mouse in The Lion King that Scar is holding up about to eat. “Life’s not fair, is it? You see, I shall never be King. And you shall never see the light of another day.

Recently we’ve had a tough time. My Dad got rushed into hospital following a nasty fall. My wife and disabled son contracted COVID, the oven broke, and the car battery died!! This all happened while trying to juggle a hectic work and home schedule. The worst possible timing.

However, like Nobi the mouse, we have lived to see the light of another day. The sun is shining even through the challenges. My wife and son are much better, Dad is stable, and the oven and car battery are both sorted. What about you? Do you have stories of a time when it was all a bit overwhelming? When you silently, or audibly shouted, “It’s not fair!” But survived to tell the tale and fight another day?

Well, I asked a few folks for their stories. And among those there are some that have seen the light at the end of the darkness, while in others, the light has not arrived, yet! Maybe you will see a little of yourself and your family in one of these stories. Or maybe you will be encouraged that it’s not just you that has days like this. We are not alone; we journey through the valleys and the mountaintops together.

You’re not the only one

“Last week of the summer holidays, having survived the whole of the summer, I decided to take both of my kids out for the day. A nine-year-old wheelchair user and a one-year-old. I packed all the bags, tubes, medical kit. Hoisted ‘E’ into his chair and ready to load into the car. Went to put the one-year-old in the car. No car seat. It was in my hubby’s car at work. Cue mummy crying because she needed to get out of the house. We did successfully get out the next day!” Naomi

“Some days just are hard. One that sticks in my mind is arriving home with my son as a baby to find my attic toilet pipe had burst. Water was running through the entire house minus one room! Trying to juggle a starving baby; phone every plumber I could and work out where my insurance details were. I wouldn’t have managed at all that day if my friend hadn’t come to the rescue. She sat with the kids while I got the water stopped and insurance people out etc. But we deal with whatever is thrown at us. And in the end the insurance paid for all new carpets and painting all the walls so it could have been worse. Just had to live in the front room for a couple of months.” Jade

One thing after another..

“One day I took my disabled dad and three-year-old son out for lunch. The car park was on a slope. For some reason my dad thought I was holding the wheelchair when in fact I was searching for my keys. He took off the wheelchair brake and went hurtling down the hill. By some miracle he didn’t hit anything and came to a stop towards the bottom after scraping along the wall of the car park. Luckily, he wasn’t hurt, just a little shaken.

After lunch I took my dad home and collected my six-year-old for a routine immunology appointment at the hospital. Taking both of my children with additional needs is like herding cats. Neither of them has a sense of direction or danger and they constantly distract each other. After the appointment, we had to go to another department for a blood test. My three-year-old had a screaming meltdown because he didn’t want to leave the toys he was playing with. It was more than a tantrum; this was a full-on purple-faced screaming fit and it took me and two nurses to calm him down. In the end, the nurses showed him their ‘magic drawer’ of toys and allowed him to choose one to take home.

When we arrived home, my six-year-old was a mixture of totally hyper and absolutely exhausted as he processed his hospital experience. This manifested itself in him pushing, rolling on and shouting at his brother and I. As he was flinging himself around, he tripped and tumbled head-first down a flight of stairs in the garden. Thankfully he was fine apart from a collection of cuts and bruises.

Sometimes you get to the end of a bad day and think: “At least everyone’s still alive, well done me.” On this day I had to add “Well yes…. just!”” Lizzie

Take a deep breathe

Wow! So many amazing stories. Such a mixture of heartbreak and hope, pain and perseverance, struggle, and security. What seems to be a common theme of these stories is faith. Faith in ourselves; faith in other people that we can trust and who just “get it.

So, next time you are having one of ‘those days’, remember that you are not the only one. You do not travel alone through this life, there are plenty of us that are having one of ‘those days’ too and we are here for you.


With thanks to everyone who contributed.

10 Ways To Get Out and Enjoy Spring

Little by little the days are getting long, lighter, maybe even warmer. Green shoots are pushing up through the earth and the first flowers of the year are here. Snowdrops and crocuses dazzling us with their beauty. Spring is coming!

If, like me, you find winter hard, with being stuck indoors most of the time and it being dark and miserable. Then you might be as excited as I am to see spring coming. After a couple of very hard years for us all, we need a bit of cheering up. We hope that this year might be the year that life can return to normal in so many ways. Our children will be feeling the same way too, and we know that a bit of sunshine, fresh air, and natural beauty can lift all our spirits. So, here are 10 ideas that might help as you try to get your children out into nature again.

You can find nature everywhere.

You don’t have to live in the country to get close to nature. Look for your local park, or if you, a family member, or a friend have a garden then you can explore there! Even a window box can be packed with beauty and life.

What can you see?

Look together for how many different flowers you can spot, and how many different types of bird. What else can you find? Are there insects out and about? Catkins in some of the trees? Look up at the clouds in the sky, what shapes can you see? Maybe take some photos.

Embrace the mud!

Accept that it’s going to be messy when they get out there. Put on wellies and old clothes so that it doesn’t matter if they get mucky. We know they will! But it will give them the freedom to explore without worrying about getting muddy. If they’ve got waterproofs use those and encourage them to splash in the puddles!

Get whatever exercise you can.

Depending on the additional needs of your children, use the opportunity of being outside to get some exercise. Maybe your local park has a children’s play area that you could visit, or some safe trees to climb. Perhaps you could take a ball to kick or throw. Or just walk around the paths, enjoying the fresh air of being outside.

Breathe!

Take a moment while your children are exploring to just stop and breathe. Take in a lungful of fresh air and slowly let it out. Feel some of the stresses and strains of the winter melt away as you focus on your breathing. When was the last time you did that? Feels refreshing, doesn’t it?

Look forward

Spring is a time of hope and expectation. What are you looking forward to this year? While you are out in the fresh air and your mood is lifted, what plans can you start to make? What might you think about changing this year? As you see the flowers opening up, feel the opportunities opening up inside of you too. Commit to making this a great year for you and your family.

Bring a little spring indoors.

Now there are rules about not picking wildflowers. But if you’ve got some snowdrops or crocus flowers in the garden, why not pick some and bring them indoors to brighten up your living space? Or plant some indoor plants and watch them grow.

Create a natural fiddles box

What items could you collect to make a natural spring fiddles/fidget box? Here’s an article I wrote for Firefly about a natural autumn fiddles/fidget box. Perhaps you could adapt some ideas and make a spring one! https://www.fireflyfriends.com/uk/blog/how-to-make-autumn-fidget-box/

Remember what you did and seen.

Take photos that you can look at the memories again. So, on a showery day when you’re stuck back indoors, get the paints or colouring pens out and get your children painting or drawing. They can recreate what they did when you went out and remembering what they saw. Are they excited about going out again?

Have adventures outdoors with friends.

If you had fun exploring outdoors together, why not meet up with some friends next time? Sharing the fun is great to do! And maybe you have friends that live near, explore somewhere that you haven’t visited yet! There are more adventures waiting for you!



I hope these ideas help you to enjoy the springtime with your family, as well as getting some benefit from it yourself. Let this spring put a ‘spring’ in your step!

Preparing for New Experiences

The tooth fairy is real, and her name is Sarah!

A lot of things have changed for James over the past six months. He had his 19th Birthday in June, and since then we have been working through many transitions from children’s services to adult services.  Different teams, different styles, different locations, lots of changes.  David Bowie might have written a song about it…

This week, the ch-ch-changes train pulled in at the station called ‘Dentist’.  For several years now James has been to a wonderful special needs children’s dentist surgery.  But, following his visit last year they told us that, unfortunately, as James would be 19 by the time of his next appointment. He would need to transition to the adult team.  In a different location.

Ready to brave the journey

So, on Tuesday, armed with visuals of the dentist, James’ toothbrush, his sensory chew, and much prayer. We let James know that it was time to go and see the new dentist.  James needed time to prepare for this new experience and to gather up the courage to come out to the car to go somewhere new.  We reassured him that we were with him and that he would be OK.

When we got to the new dentists office, there was much that was new for James. He was very unsure about it all.  Having parked the car, we tried to encourage James to get out and come into the building. But it was just a step too far for him, too much change to cope with in one go.

So, while Clare stayed with James, I trotted off to the reception desk to let them know that we had arrived, but weren’t able to come in.  I wasn’t sure what to expect; would I be told that another appointment would have to be booked; that if James couldn’t come in then it would be classed as a missed appointment; that would we have to pay a cancellation fee?

A sigh of relief

I needn’t have worried, the team were magnificent.  They immediately showed outstanding understanding and care and started planning for how they could come and see James in the car park.  A few minutes later, one of the dentists, Sarah, and one of their assistants, Jay-Jay, accompanied me to the car to meet James.

They showed such wonderful, gentle, thoughtful care for James.  Crouched down at his level, so that they didn’t look intimidating; spoke softly and carefully to him; used his own toothbrush as a familiar way of exploring his mouth.  Also, using a plastic-coated dentists mirror, designed so that it didn’t ‘chink’ on his teeth. Sarah managed to have a good look around James’s teeth, carefully assessing almost all of them and confirming that they were all OK.

When they had finished, they suggested that they see him again in three-months’ time.  Not because he needs anything done, but to build his confidence and familiarity with the location and team.  They suggested that if we were driving by in the meantime, that we could ‘pop in’ with James and if he was able to come inside he could have a look around, sit in the dentist’s chair, and say “hello” to Sarah and her colleagues.

We were absolutely thrilled with how supportive and understanding the visit was, it really exceeded my expectations and the team at The Browning Centre deserve the very highest credit.  And James absolutely deserved his trip to the McDonald’s drive-thru and a drive through the New Forest afterwards!

What we learned

As I pondered more on how well things had gone, I considered all the transferrable lessons that could be applied to other settings, including school, church, clubs and other medical or social care appointments:

  • Prepare in advance. We were able to help James understand a little about the visit before we got there.
  • Go at the child, young person, or adult’s pace.  We didn’t rush James, we let him show us how much he could manage and when he had reached his limit for the visit.
  • Be flexible.  The team at the dentists were wonderfully flexible, willing to meet James’ needs where he was.
  • Go gently.  Sarah modelled how to interact with a child, young person, or adult with additional needs; she positioned herself at James level, spoke softly and carefully, took things one step at a time, used what he had brought with him to help him, let him tell her when he’d had enough.
  • Build confidence.  This visit is a starting point, if we manage to ‘pop in’ that will help grow James’ confidence.  Planning another appointment in three-month’s time will do the same.
  • Add a nice surprise.  James didn’t expect a trip to the McDonald’s drive-thru and a drive out to the New Forest afterwards, but he was delighted that we did that, and it will add to the good memories from this visit to the dentist.
  • And finally, believe that there are good people out there who are wonderfully kind and caring.  The ‘Tooth Fairy’ is real, and her name is Sarah!

Keep flossing!

Inclusion of Children of All Needs

‘Ohana’ Means Family. Family Means No One Gets Left Behind or Forgotten.

As lockdown restrictions have eased and we continue to navigate a safe path out of the pandemic, children’s and youth work including clubs, uniformed organisations, and play centres, have been gradually resuming in-building activity.

Over the past couple of years, some children’s and youth work has stopped altogether, so meeting with children and young people again is rightly being greeted with great enthusiasm (not least by families!).  For some, children’s and youth work has continued online, with a variety of approaches having been taken to create environments that have been engaging, interesting and fun.  Much has been learned over the past couple of years, and many of us have become Zoom ‘guru’s’!

But as in-building children’s and youth work resumes, albeit initially somewhat different looking to when we last were able to do this, let’s not lose all the learning and experience we’ve gained from the last couple of years.  Let’s not abandon the progress we’ve made in reaching children and young people, and their families, through Zoom and other online solutions, that we wouldn’t have reached through in-building activity, many of whom have special needs or disabilities.

Like many children’s and youth workers, I love a good Disney movie, and that well known quote from ‘Lilo & Stitch’ keeps coming to mind whenever I think about the return to in-building children’s and youth work:

“Ohana means family. Family means no one gets left behind or forgotten.”

So often, families of children with special needs or disabilities can find themselves forgotten, overlooked, not considered when plans are being made.  After so long it is unsurprising that many children’s and youth teams are excitedly opening the doors again and getting in-building work restarting, but I’ve personally been saddened to see many people posting on social media about how thrilled they are to not have to run Zoom sessions anymore.  For families who cannot, for all kinds of reasons, attend in-building activities, this is so harmful, another form of exclusion.

So, let’s not choose between in-building or online children’s and youth work; let’s not create exclusion by cutting off families who have been able to connect like never before over the past couple of years. Let’s make sure that no one gets left behind or forgotten.

Here’s 5 ‘C’s’ that we can all do that will help with this:

1. Communicate

Ask families what they prefer, what they can access, what resources they need to join in.  Make sure we are including them as we plan, remembering that phrase used by the disabled community ‘Nothing about us without us.’

2. Community

Recognise that our community includes families that come to the building and families that connect from home.  Structure our activities in ways that link both parts of this community together so that they can enjoy being involved wherever they are and can feel the ‘togetherness’.

3. Camera

A ‘hybrid’ or ‘blended’ offering isn’t about providing an in-building programme and broadcasting it via a static camera at the back of the room to anyone else.  It’s about interaction, giving families at home a chance to contribute, share and lead; having the camera moving around to see what is happening in-building, and broadcasting on a screen and sound system what is happening at home, making it a truly interactive experience for everyone.

4. Creativity

Are we doing something ‘crafty’ or ‘creative’?  Have we thought about how to equip families that are taking part from home?  Maybe drop a bag of resources round to them so that they have everything that the children and young people in the building have, enabling them to all join in together.  Is there a programme or timetable that we could include?  For children and young people with special needs, make this visual by including symbols and photos.

5. Check-in

We generally chat with families as they collect their children from in-building sessions, so why not do the same for families that are connecting online?  Don’t just drop them an email but pick up the phone or pop round for a chat.  How did the session go for them?  What worked and what didn’t?  What do they need from us next time?  How would they like to take part?

I hope these tips and ideas will help as we continue to open up our children’s and youth work, and plan for the ‘new normal’.  Let’s make sure we all remember that “family means no one gets left behind or forgotten”.  Let’s ensure that whether families are getting involved in what we are offering in-building, or at home, that they all feel connected, and all experience the sense of community that this brings.

“Ohana!”

New Year Inclusion Resolutions – 10 Things to Remember

It’s a New Year, and as we look forward with hope to a better year ahead, it’s a good time to remind ourselves of ways that we can be more inclusive.  So, whether you work or volunteer at, or your child or young person attends, school, clubs, church, or something else, here are 10 things to remember and pass on:

  1. Be ready, do an accessibility audit

Don’t just wait for a child or young person with additional needs to arrive before you do something; plan and be prepared.  The first step should be to do an accessibility audit of the activity, event or programme that you help to run.  Is there a website, or some publicity material; is this accessible for someone with additional needs?  Is the venue accessible, can children and young people with additional needs easily get in, move around, access the facilities?  Are there any hazards that need to be addressed?  Is it too cluttered and overwhelming?

What about the programme or activity itself?  Is it offering options for children and young people with additional needs?  If there is an activity that is likely to provide a trigger point for some additional needs, e.g. something that is loud, are there measures in place to help support children and young people who might struggle, e.g. ear defenders or a quiet ‘safe space’?  Thing about the children and young people who might come; will the activity be accessible for them; can you adapt it so that it is?

2. Smile, and mean it!

We all know that first impressions mean a lot, and the first impression that a child or young person and their family can often receive on arrival is of someone looking panicky, disappointed, or appearing downright hostile that a child or young person with additional needs has come.  People’s reactions become visible in their facial expression, and those looks can hurt.

So, when you see a child or young person with additional needs arriving, think of the positive ways that including them will be great for everyone; it will help if you’ve already anticipated their arrival and planned for it (see 1. above). And smile, really meaning it; let your face show a welcome, not a worry.

3. Greet children and young people by name

As they arrive with you, say hello to children and young people with additional needs.  Call them by their name so that they know that you remember them and care enough to know their name.  Ask them how they are doing, take an interest in them, tell them a little about the things that are going to happen in the session and explore with them, and if appropriate their family, what support they might need.  Get to know them and their family, learn from their experience and knowledge.  Maybe you could create a ‘social story’, a sheet that uses photo’s, symbols and words to explain a bit about the club or event. You can find out more about social stories here: https://reachoutasc.com/resources/downloadable-resources/

4. Have someone they can ask for help

Once a child or young person with additional needs has arrived, make sure there is someone there who is looking out for them, checking that they are OK and helping them if they need it.  This could be a one-to-one helper if that is what is needed, or someone who is able to support several children and young people if that is appropriate.  Other young people can sometimes be great at helping their peers, being ‘buddies’ with suitable supervision.

5. Think sensory!

We all learn and engage with activities in different ways, but our senses play a fundamental and vital role in how we explore and understand things.  Are the activities we are providing accessing as many senses as possible?  If you are telling a story, for example, are you just reading the story and expecting the children and young people to listen, or are you creatively employing all of their senses, giving them things to see, touch, smell, and do?  The more sensory and interactive the activity is, the more children and young people will be equipped to engage successfully with it.

6. Have ‘activity breaks’

 If there is a part of the programme coming up where the children and young people will be needing to really focus and concentrate, help them to prepare for this by giving them an ‘activity break’ first to help to regulate their systems.  This could be some exercises, some stretching, maybe a short walk, or if this isn’t possible then giving them some theraputty to squeeze for example.  These ‘activity breaks’ can help wake up a child’s system that is under-responsive, and calm down a child’s system that is over-responsive.

7. Communicate clearly

One of the most common triggers that can cause difficulties for a child or young person with additional needs is when they don’t know what is happening now or next.  A simple visual timetable, using words, photos and symbols as appropriate for each child or young person that needs it, can give reassurance and understanding.  Alongside a sequence of each activity in the programme, a photo of the child, attached to a strip of Velcro, that they can move along step by step as the programme continues, can give them confidence in what is happening now, what is expected of them, and what is coming next.  The link to the ReachoutASC site given earlier provides some example downloadable visuals, and you can also find some visual timetables here: https://additionalneedsalliance.org.uk/information/ (click on ‘Resources’ then ‘Visual Timetables’)

8. Use what they enjoy doing to help them learn

Every child has things that they really enjoy doing, so why not use these to help them to learn?  Maybe it’s Lego, so get them constructing something that fits in with the topic or story.  Maybe it’s Minecraft, have them build something that represents the theme or activity.  Perhaps they like drawing, or craft… whatever it is, find out what they enjoy doing and use it to help them to learn.  A great way to find out what they enjoy is to get them (or their families) to fill in a one-page-profile sheet; you can find out more about them, and download loads of different styles, here: http://www.sheffkids.co.uk/adultssite/pages/onepageprofilestemplates.html

9. Feedback to families

At the end of the session there is a valuable moment that we shouldn’t overlook; a time to feedback to families about how their child or young person has got on during the session.  What have they enjoyed, what did they struggle with, are they happy or sad?  It is important to keep this feedback upbeat, we’ve all been there, filled with dread when a stressed looking teacher has been striding across the playground towards us.  So, focus on the positives while also seeking ideas to help with areas of struggle. If there isn’t time to have conversations with every family, maybe design a simple feedback sheet that can be filled in as you go through the session.

10. Don’t do this on your own

Finally, if everything I’ve mentioned in this article seems a bit overwhelming, you don’t have to do this on your own.  There are loads of online groups out there that you can tap into for ideas, resources, support and more.  You could try the Additional Needs Alliance, for example, a collective of nearly 3,000 children’s and youth workers, teachers, practitioners, parents, and other family members, who all journey together to make a positive difference for children and young people with additional needs.  You can find the Additional Needs Alliance Facebook group here:  https://www.facebook.com/groups/additionalneedsalliance (you will have to answer a couple of simple admin questions to join).

I hope these 10 ideas will help you, or the places your child engages with, be more inclusive in this new year!  Do remember to share them with anyone that would find them helpful.

Happy New Year!

Mark

Treasure In The Darkness, Riches Stored In Secret Places

The return of the dark evenings and long nights recently reminded me of a time when our son James, who is Autistic and has Learning Difficulties, Epilepsy and Anxiety, was only able to leave the house for an occasional night-time drive due to anxiety that he might be taken to school. This was about four years ago now when James was 15, but the story is told as if it was this week… I hope that it will be a help and encouragement for other families in a similar situation as they support their child.

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

James has been struggling to leave the house, his hesitancy to leave his ‘safe place’ is fueled by anxiety that he might be taken to school. We’ve had some success getting him to come out at night, when it is less likely that school would be the destination, although this had tailed off a bit in the past few weeks too… until Tuesday.

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

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

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

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

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

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

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

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

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

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

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

Keep on going and I hope you find your own treasure in the darkness!

Mark

As a p.s. to this story, James has gradually worked to cope with his anxiety, even returning to school, and we can now go out to his favourite places in the daytime, fully clothed!

Image rights: Authors own

Busting 10 Autism Myths

There are an awful lot of Autism myths out there; most are ridiculous, some would actually be quite funny if they weren’t so harmful, but they do seem to somehow persist in the national consciousness. So, here’s my guide to the top ten Autism myths and how we can bust them:

  1. “We’re all ‘on the spectrum’ somewhere.”  Autism is a neurodiversity, a different way of the brain being wired. You are either Autistic, or not; so no, you can’t be “A little bit Autistic.”
  2. “Children can grow out of it.”  Autism is a difference hard wired into the brain. It is an integral part of who an Autistic person is and cannot be “grown out of” or “cured”. There are loads of ‘treatments’ and ‘therapies’ out there, but mostly they seem to be about trying to force an Autistic child to behave like a non-Autistic child; few are of any real value, and most are harmful.
  3. “Autism is just a ‘boy’ thing.” Girls can be Autistic too. Autistic girls are often better at masking their differences, as well as generally being better at copying or mimicking their non-Autistic peers. This, and the prevalent myth that Autism is a male neurodiversity, has meant that Autistic girls often go unnoticed and unsupported.
  4. “All Autistic people are like the film character ‘Rain Man’, right?” Wrong. Some Autistic people have extraordinary talents and abilities, however this isn’t typical. No two people are the same, and that goes for Autistic children and young people too.
  5. “Autistic people don’t experience emotions.” Also wrong. Autistic people experience all of the emotions that anyone else does, but may express or respond to them differently.
  6. “Vaccines are responsible for Autism.” We don’t fully understand all the reasons why some people are born Autistic and others aren’t, but we do know that it’s nothing to do with vaccines. As we’ve explored already, Autism is a neurodiversity that is hard wired into the brain from foetal development, so Autistic people are ‘born’ Autistic not ‘made’ Autistic.
  7. “Child ‘A’ has ‘severe Autism’ and Child ‘B’ has ‘mild Autism’.” Terms like ‘mild’ or ‘severe’, ‘high-functioning’ or ‘low-functioning’, are not helpful when describing an Autistic child or young person. Each child is different and may have a range of other factors affecting them, for example a disability or a long-term health condition.
  8. “Autistic children cannot show love to their family.” Utter nonsense. Every time my son beams at me, love shining from his eyes, he is communicating the depth of love he has for me. He can’t say “I love you” but he shows it with every fibre of his being.
  9. “Autism is a result of bad parenting.” (Sigh) This started decades ago with studies that tried to link Autism to parents that were judged to lack parental ‘warmth’. Long discredited and completely untrue. I am constantly in awe of the wonderful, loving, caring and passionate parenting of families of Autistic children. They are the very best.
  10. “There is an Autism epidemic.” Oh dear… The ‘evidence’ for this is the seemingly ‘rapid’ change in the statistics around Autism and children. It wasn’t that long ago that these suggested 1 in 100 children were Autistic, that changed to 1 in 68, a more recent study by the Department of Health in Northern Ireland suggests it may be nearer to 1 in 22 (4.5%). Is this an ‘epidemic’? No. Is it better Autism understanding, awareness, diagnosis etc? Absolutely.

So, let’s leave the myths and conspiracy theories to other topics, there are plenty of options out there to choose from, and let’s make sure we speak out and correct anyone who perpetuates these harmful views. If we don’t, who will?