10 ‘Top Tips’ For Returning To School

As the return to the new school year gets closer for many of us, or has already started for some, it can be a time of great anxiety and stress for all children and young people, especially children and young people with additional needs. It can be a challenging and difficult time for parents and carers too, so here’s 10 ‘Top Tips’, as well as some handy web links, that will equip us to help our children return to school well. Ahead of the first day

· Take anxiety and worries seriously. It’s easy to put their concerns off or to convince ourselves that ‘they will be fine’, but the reality is that we could just be building up trouble for the first day if we put off taking their anxiety and worries seriously.

By engaging with them about this early, it gives us more time to help and support them and more time for them to process the support that we are providing for them.

· Create a ‘social story’ about the return to school. Social stories can use images, symbols, as well as text, to help communicate new or complex things to children. A social story that tells them about their new class or school, the staff they will meet, and what they will be doing, all can help to prepare them for the first day.

An example of a social story that can help here is provided by Reachout ASC: https://reachoutasc.com/wp-content/uploads/2021/05/Transition-to-new-class-2021.pdf

· Create a visual timetable for the first day, showing each stage of the day (you’ll need to get info from school for this). A visual timetable helps children to know what is happening now, next and later, what they need to do, and helps them to remain in control of what they are doing.

A link to an example of a visual timetable resource from Twinkl is provided below: https://www.twinkl.co.uk/resource/t-c-126-visual-timetable-getting-ready-for-school—girls

· Arrange to visit school ahead of the big day, if possible, while it is quiet, to walk through the corridors, see the classroom, maybe meet the teacher/TA etc. Some schools have training days ahead of school opening and it may be possible to arrange a short visit during these days. It’s well worth asking.

On the first day:

· Parents/carers, try to suppress your own anxiety! It’s hard, but children are very perceptive and can pick up when we’re stressed, making them even more anxious. In their minds, if we’re anxious, it must be really bad!

· Get into a routine from day one. Use visual cues e.g. laying out their uniform. Have that visual timetable ready.

· If possible, have them go in on the first day with a friend, even if it’s just from the school gate. Is there something they can take with them that will help them to regulate their anxiety e.g. a fidget toy? (not something precious that might get lost!)

· They are likely to be exhausted when you pick them up. Don’t bombard them with questions the moment you see them or expect too much straight away. Give them some down time first, maybe with a drink and a snack. Later, ask them what they enjoyed most about school today.

· Let them do something they choose or want to do to finish the day positively. They have had other people (including us) telling them what to do all day, letting them choose what to do, or what we can have for our meal for example, gives them some control back over their day.

· Try to get them to bed early. They will be mentally and emotionally exhausted after the first day and so an early night will be helpful, but it will also pay off the next morning when they are fresher and more awake for day two!

Useful links:

Twinkl: There’s a free download on the Twinkl website that helps explain returning to school: https://www.twinkl.co.uk/resource/returning-to-school-social-situation-t-s-2548814

You will also be able to link to other helpful resources from here.

Widgit: There are also free resources about returning to school on the Widgit website: https://www.widgit.com/resources/popular-topics/back-to-school-june/index.htm

Makaton: There’s a free downloadable pack about going back to school on the Makaton website too: https://makaton.org/TMC/Free_resources_.aspx

ReachoutASC: Lynn McCann at ReachoutASC has provided a wealth of free downloadable resources here: https://reachoutasc.com/resources/downloadable-resources/

Action for Children: Knowing how to talk things through with children can be hard, here’s some easy steps to follow from Action for Children: https://www.parents.actionforchildren.org.uk/returning-to-school

Do-IT: A wide range of useful free downloadable resources can be found on the Do-IT website, under their rather appropriate heading of ‘Survive, Revive and Thrive’: https://www.doitprofiler.com/survive-revive-thrive/

Manchester University Foundation Trust: Here’s a great resource written in collaboration between Manchester University Foundation Trust, Manchester Local Care Foundation and One Education, providing a really helpful guide for parents about many aspects of the return to school, along with some positive and useful resources: https://mft.nhs.uk/app/uploads/2020/06/back-to-school-parent-pack-final-version.pdf

Autism little Learners: Just love this site, so full of useful stuff and there are some great Social Stories on this link: https://autismlittlelearners.com/category/social-stories/

As with all Social Stories, these should be adapted or used as a starting point to create a specific version for each child. More information about how to create Social Stories can be found on Lynn McCann’s Reachout ASC site here: https://www.reachoutasc.com/resources

Use these website resources help you to stay informed and able to inform and support your children as they return to school.

I hope these ‘Top Tips’ and website links are helpful for you as you navigate a path through the return to school with your child.

The Neurodiverse Coke Can

There is a great analogy that helps to explain why neurodiverse children (e.g. who are Autistic, or have ADHD) are perceived to be able to ‘cope’ and be ‘fine’ at school, but can become overwhelmed by the time they get home. There are so many stories about children who appear to be totally different in these two settings; the coke can analogy helps us understand why… Here’s Jack’s story: 

  1. Tired 

Jack was up late last night, he wanted to play Fortnite with his friends and it inevitably ran on past bedtime. All that screen time made it hard for him to get to sleep, so when he was woken up to get ready for school he was tired – ‘shake the coke can’ 

  1. Transport 

Jack usually gets picked up by school transport. The usual transport escort is off sick, so a replacement has been sent. They don’t know Jack and he doesn’t know them. They don’t realise that Jack has to sit by the window facing the front otherwise he gets travel sick – ‘shake the coke can’ 

  1. Bullying 
    As Jack arrives at school and heads to his classroom, two other pupils are waiting for him. They enjoy mocking Jack because he is Autistic. Jack’s parents have spoken to the school about it but the school feel that Jack is overreacting – ‘shake the coke can’ 
  1. Teacher 
    Mrs. Smith is Jack’s favourite teacher; she understands him and helps him to know what to do in lessons. Often, she prepares resources just for Jack that he finds really helpful. Mrs. Smith is away from school today so a supply teacher is taking the class, she doesn’t know anything about Jack, she hasn’t prepared any resources to help him – ‘shake the coke can’ 
  1. Noise 
    The supply teacher finds it hard to control the class, some of them become very noisy and disruptive. Jack finds loud noise overwhelming; he has ear defenders, but he gets mocked when he uses them. Mrs. Smith makes sure this doesn’t happen, but she’s not here today – ‘shake the coke can’ 
  1. Hungry 
    Jack has a free school meal. There isn’t much choice about what he is given. Today it’s fish pie… Jack was hoping for sausages or pizza. He doesn’t like fish pie and so doesn’t eat it. He’s hungry now – ‘shake the coke can’ 
  1. Playtime 
    Jack goes out into the playground. His usual friend, Jaden, is involved in a game with some other boys and Jack doesn’t want to push in. The two boys that bullied him earlier are in the playground too, so Jack goes inside to hide in the library on his own until the bell goes – ‘shake the coke can’ 
  1. Routine 
    Because Mrs. Smith is away, they have changed the timetable for the afternoon and are going to do PE instead of the usual maths lesson. Jack hates PE, the hall is noisy, he’s not very coordinated in his movements, his balance isn’t great, and he can’t run very fast. He gets mocked for this too. He loves maths, but maths isn’t happening this afternoon. The usual routine has changed, Jack finds all of this very hard to process and adapt to – ‘shake the coke can’ 
  1. Transport (2) 
    After a difficult drive into school this morning, Jack is dreading the journey home. His anxiety levels are rising fast and when he sees that it’s the replacement escort again, he almost has a panic attack. The replacement escort doesn’t listen to Jack when he says that he has to sit by the window facing forwards. Jack feels travel sick all of the way home – ‘shake the coke can’ 
  1. Missing bag 
    As the transport turns into Jack’s street, he reaches for his bag. It’s not there. He suddenly realises that in dealing with almost having a panic attack at school he forgot to pick his bag up from the peg. It’s got his dirty PE kit in it, his homework for this evening, but also his comfort toy that goes everywhere with him. Jack asks if the transport can return to school so that he can get his bag, but he is told he will have to get it tomorrow – ‘shake the coke can’ 

Jack arrives home. As far as school are concerned, he’s ‘coped’ and been ‘fine’ today.

Jack has managed changes of routine, changes of staff, bullying, tiredness, sensory overload, hunger, isolation, loss of his bag, increasing anxiety and panic, travel sickness, and more.

He’s just about held it all together because if he can’t hold it all together at school he is mocked and bullied by the other pupils, the teachers think he’s being badly behaved, and he ends up with trouble all around. 

As he walks through the front door, his parent asks him “Did you have a good day at school today, Jack?” and in doing so metaphorically pulls the ‘ring pull’ on the coke can that has been shaken all day… Boom! Jack erupts, and his parent wonders why this always happens at home and not at school… 

The summer holidays

Send coffee. Send chocolate. Send help (Insert other generic mum jokes here).

I would have used a lovely picture of Amy ready for her last day of school for this blog.

However, I cannot because in spite of my constant effort to be organised, I got my days mixed up, misread the term time calendar,  and actually thought tomorrow was her last day.

So as I type this I ache to my core. I have somehow managed to condense almost two days of child free errands into one day.

I have feverishly prepped meds and feeds, I have re-organised Amy’s room, I have returned phone calls that I missed whilst I was at the gym earlier, I have walked the dog, amongst many other tasks.

Excuse of course the messy bedroom pictured, I am sure we would all have much preferred the beautiful last day of school photo that will never happen now!

I don’t feel the dread many people feel in relation to school holidays.

I look forward to Amy being around lots more and seeing what adventures we can get up to. But I do dread the exhaustion that will come with it. 

I have been making a more conscious effort to get her in her walking frame more, and to hoist her more.

It’s all quite time-consuming but I know it’s the right thing to do.

The easiest thing isn’t always the right thing.

If Amy could have her way, we would spend the whole day walking (and she would have her music on the whole time or cue frantic angry hair pulling.)

Much as I love trying to get fit and getting out into nature, it’s physically very demanding.

This year more than ever, now that Amy is 8, I find myself comparing her childhood to my own.

It’s not necessarily a good thing to do, but I think it’s natural. 

It makes me realise just how much additional planning goes into things and also how non-inclusive so much of it is.

Almost every holiday club or activity day seems to be geared towards able-bodied/neurotypical children.

It’s just another thing we have to miss out on. We don’t get a choice. Every time an ad comes up on my social media for it I feel resentment knowing that there isn’t any point even enquiring.

Why is it that people who need the help the most are the ones left without? Why don’t our children get the same opportunities as their peers?

I have mentioned to people before how in the school holidays we struggle to get basic day to day jobs done.

Those not in our situation have sometimes retorted “oh well, jobs can wait! There’s always tomorrow!”

But sadly no. Constant daily soiled bedding, management of tube sites/maintaining hygiene, preparing meds, medical interventions etc don’t all take a day off.

Sure, some of those things probably could wait a little, but realistically no. Our house has many 100s of invisible cogs turning. If one cog gets jammed then everything comes to a halt, or worse. 

Unfortunately for us, independent play is not possible. My daughter’s level of enjoyment and activity is dictated solely around what those around her do for her.

It’s a lot of pressure but I do feel an almost constant guilt that what I am doing isn’t enough.

I also feel bad that sometimes I really would just like to rest.

As a child I was great at independent play, I was (and still am) quite introverted and would happily draw all day, read, or colour in. I would watch films (sometimes the same video over and over!) and whilst I know I will have been hard work for those caring for me, I know that a lot of the time I was quite easy in some respects.

So really comparing doesn’t work. Amy dislikes crafts, doesn’t enjoy being read to, and isn’t really interested in teddies.

Even if she was, she would still need someone there to facilitate it all. I worry sometimes she must be frustrated, or bored with me.

It’s a constant journey mentally.

Some of our days out go spectacularly well, others a disaster. I guess it’s the same for any family.

But I do find that sometimes if Amy really dislikes something, it puts me off going again.

For example, the last time we went to an aquarium she had a particularly bad episode of irritability.

I am not sure if it was a sensory issue as the place was busy, that she was in pain, or that she was bored.

Whatever was going on, she was inconsolable.

It was a scramble to get her back out of the building as it was so busy. It was disheartening because once again she had had a bad time doing something everyone around her loved.

The same happens at the cinema and in certain coffee shops. I know that part of it is lighting and space.

I have noticed over the years and can now enter somewhere and know whether or not she is likely to become distressed.

Getting the balance between trying new things and sticking to what we know is hard.

We want to broaden Amy’s horizons and give her every chance to enjoy so many things.

Equally,  we have to conserve energy and carefully choose what to do.

Otherwise, we risk causing all of us mental health issues, wasting money, petrol and energy.

Sometimes she will surprise us and on the day thoroughly enjoy something new – or she may enjoy something she usually dislikes whilst with carers.

It seems many stars have to align for the best days… lack of pain, not too tired, not too many seizures, correct activity at the right time of day, suitable music/toys etc.

This year I am compiling a list of things to do, and places we would like to go.

Obviously, this is always subject to change. Lack of sleep, illness, mood, many things could affect this. Then of course, fuel costs, prices for things, changing facilities, weather and so on too. 

Amy likes lots of position changes and activity changes.

This can all become very tiring, but I am hoping to try to eat sensibly, stay hydrated, and as rested as can be so that I can be the mum she needs me to be.

It is rare for her to want a “lazy day”, there is never an option to just pop a film on etc and I have accepted this. 

What are you doing with your school holidays? Any tips to get through?

Wishing everyone all the best.

Heatwave… again?!

Oh good grief, I thought the UK was meant to be a temperate, damp country?!

Unfortunately, as climate change takes hold and the UK bakes in the second 4 day heatwave of the summer, Team V have taken shelter in our front room where it is (for now at least) mercifully cool!

Amongst the various dire weather warnings on the TV, there are few of note that are not publicised quite so readily but that if you stop to think make perfect sense.

For example, children like the Dude who use wheelchairs and have limited or no independent mobility are at a very great risk of heat stroke – they can’t seek shelter if you don’t take them to it.

Likewise, sitting in a chair all day gets very hot and sweaty; for kids like my boy who take medications that already increase their need for water during the day, the sudden increased temperatures put them at a much greater risk of heat stroke and dehydration than their peers.

The same goes for adults too.

A number of medications including SSRIs, blood pressure medications and others will also increase your risk of heatstroke.

Trust me, it isn’t worth getting sick just to soak up the sun’s rays for a few days of extreme heat.

We *will* have sunny days again in the UK (promise).

Another issue for my boy is that the changes in air pressure herald an increase in seizure activity – and it’s a real doozy.

For the first day of this heatwave, the poor chap was pretty much twitching constantly, tipping into a full seizure every hour or so.

They may not look like much but they are exhausting for him. The only thing to do at this point is to try and keep him cool.

Enter, the Cool Pool.

In truth, this is simply a 2m wide, 60cm deep paddling pool bought off a well-known internet site, set up on the patio.

Thanks to its fabric cover and filter it stays clean, and the sun warms it enough to take the chill off, however, it is still a tad cool shall we say.

Perfect for when the temperature is +30C and you are an 11-year-old chap who feels like he’s melting.

Mum and Dad are quite big fans too.

Forget the expensive SN equipment for a moment; this paddling pool has quite simply been the greatest investment of the past few years.

The Dudes gantry hoist fits over it allowing easy depositing/removal of said small person, hopefully meaning we’ll get a few years of use out of it.

The support of the water allows him the freedom to move independently, something that gives him immense joy, and the resistance it provides helps exercise his muscles building his strength.

Best of all, he loves being in it so it’s physiotherapy in disguise – our favourite kind!

If like us you have a child who hates the heat but loves the water, the boy and I cannot recommend this strongly enough.

Saving coppers, but at what cost?

As back to school time approaches and I find myself buying uniform and schoolbags a letter arrives about this years travel arrangements for my disabled son.

Once again it’s yet another company, a different driver and a different route. Why?

Because someone else put a bid in for the route that was pennies cheaper than last years company so they get the contract now instead.

For the sake of those saved pennies to the local authority, I will now, once again, have months of my child self harming, screaming, confused, anxious and agitated as he struggles to adapt to the change and I struggle to help him and trust strangers to once again transport my vulnerable son who can’t even speak.

We go through this every single year not because the previous people didn’t want to do the job another year but all because of a policy that means the cheapest option must always be used whatever the impact to the user. 

There’s no compassion for the stress or upset it causes or the understanding or awareness of the level of anxiety it unnecessarily puts my child (and us) through.

It’s cheaper, and apparently, that’s all that matters. 

It’s not just school transport that has this attitude either.

It’s the same with the medical supplies that he needs for his safety and dignity.

For years we had a great product that fitted well, was comfortable and provided the support required.

Then my son outgrew the product and we had to go through the process of getting the next size.

Unfortunately now the next size of the same product isn’t anything like as good a fit, nor is it comfortable for my child, and it doesn’t provide him with the same dignity or support he desperately needs.

I requested another product instead but I was informed those can’t be supplied as they cost a few pence more! 

Now as a result of having poorly fitting products I am having to wash his clothes far more often, provide numerous changes to school daily and even having to dispose of clothes most weeks as the product has leaked or not remained in place and therefore the clothing has become ruined.

What saves the health authority pennies is costing me many pounds every week and causing my son distress and discomfort that could so easily be solved by being willing to spend just a tiny fraction more for the right product for him. 

I know my child is vastly expensive and as a disabled young person he will forever require 24/7 care. I absolutely appreciate and am grateful for any support or help we receive.

This isn’t being ungrateful it’s about a system that sees only cost savings above everything else and refuses to look beyond the fact that the cheapest option isn’t always the right one. 

I get that budgets are limited. I understand prudence and accountability. My question is though: is the cost and impact of saving coppers really worth it in the long run? 

What about the radical idea that the needs of a disabled person were forefront in any decisions? What about if we actually valued people like my son enough to realise that by saving just a few pence you are in fact costing somewhere else much more and impacting on so many other areas like his education and family life needlessly?

What about someone somewhere actually stopping and thinking ‘is this really worth us saving just a few pence?’ 
Surely my son is worth that?

Do we really think so little of disabled children and young people to say only the cheapest option will ever do for them? 

The saddest thing of all is that so many families like mine face this day in and day out.

So many disabled children, young people, and adults have been told that they can’t have what they need just because it’s not the cheapest option.

Their dignity, pain, stress and anxiety doesn’t seem to matter at all. 

All that ever seems to matter is saving a few coppers every single time whatever the cost leaving families left to pick up the pieces of a system that values a few pennies saved over anything else. 

Don’t limit them more…

My 13 year old son is disabled. There are so many things he can’t do: 

He can’t speak.

He can’t read. 

He can’t write.

He can’t play video games.

He can’t even wash or dress himself.

And he still can’t jump. 

Having all these difficulties limits him in where he can go and what he can do.

He can’t go out and play with friends or kick a ball in the garden. He can’t join a sports team or ride a bike. He requires adult supervision at all times. 

Taking all that (and so much more that I could list too) into account his life experiences could so easily be very limited.

People would understand if I never took him to the library or the swimming pool or the park.

Most people would appreciate if I was anxious taking him to the beach or even on a walk. I used to be exactly that: anxious to take him anywhere. 

Then one day I realised something significant:

My anxiety was limiting him even more than his disability! 

So I took him swimming even if all he did was sit with his feet dangling in the water.

I took him to the park even if all he did was sit on the younger children’s equipment watching other children play while he flapped and laughed.

I took him to soft play even though I had to carry him around or go in with him to support him. I took him to the library to look and feel books even though he couldn’t read any of them. 

Then this last week I took him for his first ever visit to a trampoline park even though he can’t even jump! 

I didn’t ask for or expect any discount. I wanted him to be as included as everyone else and get the same treatment even if I had to sit on the floor to put his socks on and guide him carefully by the arm to the trampoline area.

In fact, the only time I even mentioned his challenges was asking if we could skip the safety video as he wouldn’t understand or sit through it and asking if I could remain with him throughout. 

Standing on the trampolines wasn’t possible for my son. He couldn’t balance and he was scared.

So he sat down while I sat close to him as he felt and watched the others around him.

He couldn’t run around like them or jump but he sat there as his body bounced as his smile grew and his laughter got louder.

He had an absolutely brilliant time enjoying the activity in his own unique way. 

His presence wasn’t stopping anyone else from playing or causing a disruption.

In fact, lots of the other children were curious and thrilled when I said they could jump close by so he could feel their movements. He added to their pleasure just by being there and made others realise that there are more ways to have fun than the traditional way everyone else participated in.

When he’d had enough I helped him back up and we headed home again just like everyone else. 

Back home that night he looked through his communication cards and smiled as he showed me one of a trampoline smiling.

In his own way, he told me that he’d had a great time and wanted to go back. 

We’ve already been back again and I suspect we might even be one regulars there. Will my child ever be able to actually jump? I doubt it but that doesn’t matter. 

What matters is that I don’t limit my child even more than he already is. We might have to adapt and do things differently but that’s ok.

It’s ok to be anxious if your child has extra needs but just don’t limit them more than their disability already does.

Don’t let your anxiety hold them back from having fun, however that looks to them. 

Summer Holiday reading for parents and carers of children with Additional Needs

It’s holiday season! That time when we either pack up our stuff and head somewhere for a week or two, or maybe have a ‘staycation’ and relax a bit locally. Either way, a popular item in our collection of things for the holidays is our reading list; some great books that will entertain, delight, scare or surprise us! 

But how about if we think about this from the point of view of parents and carers of children with additional needs.

What books might we add to our summer reading list that will give us some helpful understanding or top tips that will help us with our child?  
Here’s some book recommendations from me that you might like to add to your summer additional needs reading list! 
‘The Reason I Jump’ – Naoki Higashida – ISBN 978-1-444-77675-1 

Written by an Autistic boy when aged 13, telling his story and describing the world as he experiences it. There is also an award-winning film based on the book 

‘My Diary’ – Emily Owen – ISBN 978-1-78893-166-3 

A real story of childhood disability, challenge, and hope. Covering issues of self-image, self-worth, loss, faith, perseverance, and mental health through the experience of a teenager. 

‘Eye Can Write’ – Jonathan Bryan – ISBN 978-1-91160-078-7 

A true story of a child growing up unable to speak or communicate, then given the tools and belief to release his potential and unlock his communication. A personal and powerful story. 

‘The Story Behind The Songs’ – Kat Mills – ISBN 978-1-9160-7440-8 

Written by adult who identifies as Autistic and also has Attention Deficit Hyperactivity Disorder (ADHD) and Sensory Processing Disorder (SPD), sharing the related stories behind some of her highly acclaimed and successful songs. 

‘The Life You Never Expected’ – Andrew & Rachel Wilson – ISBN 978-1-78359-352-1 

Sometimes as parents you end up living the life you never expected, as the writers did when both their children were diagnosed with additional needs. This is a story about surviving and thriving. 

‘Shattered’ – Rachel & Tim Wright – ISBN 978-1-78259-896-1 

This is not a ‘fix it quick’ kind of book… this is the book you want when your dreams seem out of reach. Bravely honest, funny, faith filled, and refreshing. 

‘A Boy Made Of Blocks’ – Keith Stuart – ISBN 978-0-7515-6327-6 

Inspired by the author’s experiences with his own son, this book is a moving, hilarious and most of all true-to-life story of love, family, Minecraft, and Autism. 

‘One Thousand Gifts’ – Ann Voskamp – 978-0-310-32191-0 

A book that will challenge you to look differently at each day, to count your blessings, to live fully right where you are. It will help you look away from the dark places and to see the glimmers of light. 

‘Forest School and Autism – A Practical Guide’ – Michael James – ISBN 978-1-78592-291-6 

Michael James runs his own Forest School in Somerset. He has 15+ years experience working as a support worker for Autistic people and is a member of the Forest School Association. 

I hope you enjoy these book list recommendations and find them helpful. If you know other parents or carers on a similar journey to yours, why not start a book club and meet over a coffee to chat about the books you’ve read! 
Happy summer!