Should I be worried about them using this ‘tech’ too much?

I admit it, I’m quite grateful for them to be occupied and relatively quiet right now. They sometimes play educational games, but today they are not and I’m not challenging that, they are happy.

Last night I listened to a debate about how much technology and screen time we are exposed to, both as adults and children. And I wasn’t shocked to hear that many of us spend more hours a day looking at screens than we do asleep.

I have no doubt that we are as guilty as anyone of adding to that average. Did I feel bad? I did a little. Especially when the presenters were talking about children feeling neglected by their parents because they spend too much time on their phones.

That is sure to touch a nerve with many parents.

They also discussed the number of graduates who found presenting and talking to people in person a real challenge and those who wrote on their CVs in text speak! (Imagine!).

That was rather more shocking to me. 

So what should we be limiting our time using technology to? Just educational stuff?

Are we essentially ruining our kids’ chances of employment if we don’t lay down the ground rules now for using language correctly and speaking to people in person rather than text and email? 

How do we really know if this is a bad thing or not?

The world is so different for our kids. We didn’t have this technology when we were their age and we don’t really understand exactly what the world will be like when our kids are adults. 

And is it harder for SEN parents? 

For example, my daughter who has no additional needs, will sit for hours writing and drawing, cutting and sticking, she is so artistic. I join her, we colour and we create.

It’s great and I simply love that she is following my passion for art. 

But for my son, after a few minutes of using his hands to do these things he is pretty tired.

And frustrated (he has Cerebral Palsy, Spastic Quadriplegia and is a wheelchair user).

Whilst we do often practice them as he needs to develop his fine motor skills and that is all part of his therapy, we certainly don’t sit and write and draw for hours.

A couple of words written or a picture attempted and that is enough for him. So then he wants to do something less demanding, like watching videos on YouTube.

Who can blame him? Because he can do that independently. 

He generally watches sport (any kind of sport). He loves football and racing from horses through to Formula One, just like his father!

He will no doubt watch Sky Sports News on a continual loop one day very soon, like his father too!

But is it wrong to let him watch too much of this, when it is something that he really enjoys and it relaxes him?

It works for us at the moment and really helps our lives function. And sometimes, as many of you will appreciate, having a child with additional needs means that function is the best you can achieve.

In fact that’s a great day!

We did do our research when buying the children a tablet and we were advised by Hadley’s sleep clinic that a Kindle is the best because it omits light differently to all the other tablets and does not interfere with your sleep (as much).

But does that make it any better than putting him in front of the TV?

And because holding a pen and recording is a huge challenge for Hadley, he has just been provided with a laptop for school and all of his home learning.

So if we were to limit the screen time he has, we would not have much choice but to reduce the time that he really enjoys playing games and videos, because we obviously cannot recommend that he spends less time learning at school than he needs to. 

I don’t honestly have all the answers to my questions. Whilst I appreciate that we probably do use our screens slightly more than the average family, we do tend to have a (I believe) fair reason for this, most of the time.

Sometimes we just need a break from all the transferring from equipment and physical strain.

Sometimes we just want to escape by ourselves.

I guess in the days before smart phones and laptops people escaped with alcohol and/or a book (I still do that too!). 

But also because other tasks are harder for us to complete as a SEN family at times and so we use technology to help.

I wish I could say that I adhere to a ‘no tech’ at dinner time rule, but sadly I don’t manage that either, not all the time. Because there are many times that the only way I can get nutritional food into my son is when he is completely distracted by something on TV or tablet.

Then he has been known to consume entire bowls of mashed veg, when without distraction it is nothing short of a war! 

I am not proud of it, but I weigh it up against the fact that his body so desperately needs the vitamins, fibre and fat. 

I challenge any parent not to do the same when they are worried about their child losing weight and becoming malnourished. That’s very real for so many of us.

Maybe I’m a terrible parent. Or maybe we all just do what we have to do. There are no real rules to this SEN parenting lark and I do think that the graduates who could not present well or write a CV were affected by other things, not just their love for their phones! 

I believe it is our job as parents to encourage our children to be the best they can be in all aspects of life despite how much screen time they have.

I don’t think we should beat ourselves up about it or feel like a lousy parent if sometimes it just doesn’t work like that.

If they are happy, loved, doing well at school and healthy, that is way more important to me. I’m very lucky that both my children are.

So I don’t think I will be adjusting the time that we spend using tech all that much. But I will be mindful and try to reduce it where I can.

I am aware that our time together is precious and that I will be very sad the day they choose to spend their entire lives in their bedrooms talking to their friends on snapchat rather than me. (I’ll be devastated).

But that is a battle for another day. 

Like every mum, I rarely get to watch the news (it’s all Sophia the First and Blaze and the whatever they are…) but when I’m working, I like to have it on in the background, just so I feel like I live on a planet where there are other humans other than five year olds.

But how I wish I hadn’t turned the TV on!

Having only just regained a small amount of perspective since the small boy who was dragged to his death by an alligator, the brutal murder of MP Jo Cox and the shootings in the Orlando nightclub, I saw the body of a child lying lifeless, covered on a road in Nice after the most horrifying terrorist attack.

I literally felt numb.

I could have raced straight to school and grabbed my kids and done a runner to a remote island there and then to get them away from all of this.

These terrifying incidents have made me question the sort of world we have brought our children into!

What on earth is wrong with us?

Why so much hate and killing and sadness?

The fear of losing a child, or leaving a child without a parent, is something that I find very hard not to dwell on at times.

Perhaps because I have friends who have lost both children and parents, it is something that I think about more than others?

Or is it just because we seem to be pelted with this tragic news every week?

I feel like I have a constant pit in my stomach.

A horrible underlying fear that the world is not the nice place we so desperately want it to be for our children. And that something bad is around the corner.

Is it just that I’ve had a few hours of sleep a night for the past six years (living in a constant haze of jumpiness and exhaustion) that I’m so on edge?

Or is this fear actually very real and very rational?

Is it because I am a mother of a child with a disability that I feel more frightened of the world around my kids and more inclined to wrap them in cotton wool?

Perhaps the fear is accentuated by my heightened sense of awareness that the world is not accessible?

Life is going to be hard enough for my kiddos, without having to worry about things like murder and terrorism and darkness.

I’m trying really hard to focus on the positives right now. Especially as it is the school holidays and the kids just want to have fun!

I’m trying to quell the anxiety that plagues the depths of my mind.

To do that thing that people always tell you to do – ‘Live each day as if it’s your last’.

To eat the ice cream and the cake, to go on that trip, to ditch the mundane and enjoy the world we live in.

But, no matter how much un-abandoned fun we have; how much ice cream we consume and how many times we splash in the sea, the feeling doesn’t completely go away.

Not least because both of my kids seem obsessed with the concept of dying at the moment.

Not in some sort of sinister way of course, but in the way all kids are when they figure out that people and pets do not live for eternity.

They are beginning to understand that with death, comes sadness.

They are worrying about when it will happen and who it will happen to and they seem noticeably anxious about it, asking lots of questions that I find very difficult to answer – because I don’t like thinking about the answers myself!

It has made me wonder.

Are they going through this stage earlier than normal?

Are they picking up on the news they hear on TV and that they hear us talking about?

Has death been brought to their attention too soon?

Surely they should just be worrying about what flavour jam they want on their toast or what they want for their birthday, not when members of their family will pass away?

All you want to tell your kids is that they are not to worry and that nothing bad will happen.

But that feels so untruthful and I’m always telling them that they really shouldn’t lie. So I won’t lie to you now.

I’m struggling with how to manage this topic with them and to not fear for their future.

Because I can’t promise them that nothing bad will ever happen.

I can’t promise them that the world is a wonderful place and that everyone is kind and that we are all safe. Because I don’t believe that.

I don’t think we are currently doing a very good job as a human race.

But what I can do is reinforce the positives and try to help them understand this world that we live in.

To educate them about dangers and pray they never have to endure any of the evil acts that seem to be happening every day.

And to make sure they feel loved. That they understand life should be lived and enjoyed.

And then do that with them, as much as is humanly possible.

www.eternitywhere.com/

New friends whose bonds would prove to be stronger than anything life with children could throw at us!

Having babies so severely prematurely is a rollercoaster of grand proportions.

And the intensity bit of Neonatal Intensive Care is nothing short of bizarre and petrifying – exaggerating every emotion you can imagine.

But those shared worries, fears and medical procedures.

Those sleepless nights when you don’t know when or if you will see your babies again.

Those tears of frustration and joy and a hundred-odd breast pump jokes.

Watching for each other’s apnoea and SATS alarms when we popped to the loo.

Discussing milk, poo and reflux meds until you can’t talk about it anymore.

This ‘out of world’ experience is what sealed our bonds forever more and is what gives us an understanding that goes unsaid.

Like a secret nod that only we understand, that says: “I get it, I’m here. I’ve got your back.”

I am so lucky. During the time my twins were in NICU I met lots of people who were incredible, but the three ladies that this is about are special.

I now literally cannot live without them.

They have given me support and love and unquestioned understanding that nobody else on the planet could give me.

If they cannot stop my fall, they always pick me up off the floor. Even at times when they barely have the energy and ability to get through their own day. 

They would answer the phone at 2am to me if I were in need. And I to them.

These friendships have grown to become even more invaluable as time has gone on.

Not least because all of our children have long-standing health concerns due to their prematurity.

Yet another reason I’m convinced we were meant to meet. It’s another tightly twisted tie that keeps us all together, knowing that we are not alone.

That every operation, treatment and therapy we have to watch our children endure is felt not only by us as their parent, but by each other.

We all go through it together.

Even when I lose my temper for no reason, they never judge.

They understand the stress and pressure that is on my shoulders like nobody else can. Because they feel it too.

It’s pushing down on them all the time as well.

Yet, despite everything we have going on in our lives, we still manage to have fun! 

To make time to see each other and enjoy life in-between the madness. 

We eat cake (there is lots of cake) and our children adore each other as much as we adore each other. It’s like having three sisters!

Katie, Rach and Lu, this one is for you guys.

Whilst I truly wish our children did not have to endure the challenges and issues that they cope with way better than I ever would, I’m so grateful that the universe decided to throw us together.

We probably would have never met had we not had these little people at the same time and even if we did, who knows if we would have become so close.

I love you all loads. Thank you for keeping me together.

There is something with magical powers in our family; my son and his bright orange wheelchair.

The attention that Hadley has received since we purchased a Veldink for Kids (Kiddo Tilt) is incredible.

Everywhere we go, people are in awe of it.

They ask questions about it.

It turns heads. It educates people that not all wheelchairs are the same and it makes our lives easier.

People seem excited by it and they are not scared to ask things that they possibly wouldn’t approach if Hadley was in a pushchair.

People love to comment on the colour (it was custom-made for orange and train obsessed Hadley) and often ask where it’s from and how it helps.

There was a time that this attention would upset Hadley beyond measure.

That it would cause him to vomit with anxiety. But now, he laps it up. It makes him feel important.

And I hope it helps to make the world just that little bit more accepting of those of us who come with a couple of extra wheels, in whatever shape or form.

His friends and sister love it too. They love having a go, whizzing themselves around the school playground.

It’s like the amazing bike that the cool kid got for Christmas that everyone wants to have a ride on.

It’s powers are endless. It’s so bright and attention grabbing that it shouts, “Hey, look at me, I’m so cool!”.

But it also has the wonderfully ironic ability to help Hadley blend in. Giving him the power to be the same as his friends.

It’s not that I want my son to necessarily blend in, to the contrary in most situations.

But for a five year old with Cerebral Palsy, amongst 30 kids without Cerebral Palsy, I completely understand that he would want to feel the same as everyone else in his class.

It’s as if the wheelchair chooses to make his differences really exciting and cool or to make them vanish, depending on the situation.

It just seems to know what Hadley needs at any given time.

When we visit places, we seem to get preferential treatment, compared to when he had an NHS chair. It’s like taking a (minor) celebrity out with you.

We seem to be the talk of each shop, restaurant or hospital visit. People move out of the way of it, like it’s some sort of royalty.

In the NHS chair I have been known to have to push Hadley in the road, as rather rude members of the public hogged the footpaths and refused to give way to us.

And this is before I even talk about what it does for him physically. It’s a wonderful piece of kit, that supports him where he needs it and is designed to allow him to self propel with ease.

Something he was unable to do at all in his NHS chair. It is protecting him, like a shield. Ensuring his little body doesn’t endure too much stress and therefore avoiding injury.

I am so glad that we discovered this brilliant piece of equipment. We fundraised and saved to be able to provide it for him. And we honestly couldn’t get through every day life without it now.

It’s opened up opportunities for so much more than just getting around.

He can play sport in it. He can go off roading through forest in it. He can even do wheelies in it! And he can relax in it.

Knowing that for now, this hunk of metal is taking the strain, and helping life become that little bit more manageable. I’m not sure he will ever forget it. We certainly won’t.

If you would like to know more about Veldink wheelchairs, please contact Murray’s Medical.

The presentation was at the Loo of the Year Awards, attended by key players in the toilet and personal hygiene industry, as well as leading retailers, restaurant and pub chains, visitor attractions, holiday parks, shopping centres and local authorities.

The room was pretty silent as I spoke.

So I think I can safely say that I achieved my goal of raising awareness.

Speaking in public is not something that I would have put myself forward for before I became a special needs mum.

But as Hadley’s parent, I feel a real sense of duty to get involved in the Changing Places and Space to Change campaigns and to try to make a difference.

This was a fantastic opportunity to get in front of some important opinion formers and decision makers that I couldn’t possibly pass up.

It’s amazing what we can do as special needs parents – the things that we find ourselves doing that would normally be way out of our comfort zones.

We are inspired by our incredible children who deserve so much better, and that makes us a force to be reckoned with.

And I’ll tell you a little secret.

I actually really enjoyed standing up there.

It felt good to educate a few more people.

To say my piece and even more so to get a supportive response.

I feel like we are slowly getting somewhere.

Here’s just a little bit of what I said…

This is my son, Hadley. 

He was born severely prematurely and as a result he has Cerebral Palsy. 

Hadley, as you can see, is a wheelchair user. 

But what you can’t see, is that he is incontinent because of his condition and needs nappies.

Standard accessible toilets do not meet the needs of many of the disabled population.

They almost always exclude anybody who cannot use a toilet independently, including Hadley.

This is one of the most heart-wrenching challenges we face when away from home, whether that is shopping, days out or hospital appointments. 

Hadley is too big for baby changing tables and cannot stand unaided or sit on a standard toilet. 

So, we are regularly faced with the harsh reality of having to change him on a toilet floor. 

Often, a disgusting, urine-soaked, toilet floor. 

And if a private disabled toilet is unavailable, we have no other option than to change him in the ladies or gents or the boot of our car in view of others.

It’s undignified, unhygienic and unsafe. 

It reduces both of us to tears.

You wouldn’t dream of laying a new born baby on a filthy toilet floor, and yet still it is widely acceptable for disabled children and adults to have to endure this. 

We regularly avoid going out for fear of the toilet facilities we will be faced with. 

It is utterly soul-destroying that a five year old should have his life restricted so much already. 

And it’s not just Hadley who is at risk.

I put my ability to care for him in serious jeopardy every time I lift him in and out of his wheelchair and up and down from the floor, trying so hard not to incur a back injury. 

I struggle with a five year old. I have no idea how parents and carers of older children and adults cope.

They must be superhuman! 

So, like many other parents and carers, I spend most of my spare time campaigning for change.

Raising awareness of this issue and talking to businesses, local councils, the media, and anyone who’ll listen, about the need to improve facilities for families like ours.  

Because I believe the main problem is not people’s willingness to help or change, but the fact that most people are unaware this problem even exists! 

We would like to see official ‘Changing Places’ facilities like this in all large public buildings including:

Train stations, airports, bus stations, ferry ports, Sports stadiums, leisure facilities, museums, concert halls and art galleries.  City centres and large town centres, supermarkets, shopping centres, Major motorway service stations, town halls, civic centres and libraries Schools, colleges and universities, hospitals, health centres and community practices. 

I believe that they should be fitted to existing buildings retrospectively and should be included in all new public buildings as standard practice.

A changing place toilet is an additional toilet and changing room for anyone with special needs or disabilities. 

It includes a height adjustable, adult sized changing bed and ceiling mounted hoist. 

As well as a peninsular toilet with space for a carer either side, plus plenty of space for carers and equipment to comfortably move around. 

The recommended size of these facilities is a minimum of 12 square meters. 

These pieces of equipment allow for the safe and dignified changing and moving of any person who needs help with their toileting and personal care.

Ideally, we would love to see Changing Places facilities everywhere.

However, where space or finances are limited, any positive change to be more accessible, is better than none. 

With the Firefly Garden Space to Change campaign, venues can gain awards for being more inclusive to families with special needs by: 

Providing a height adjustable changing bench and mobile hoist.

Or simply providing an adult length changing bench with safety barrier.

Even small businesses offering services to younger children can achieve a green award for providing a private hygienic facility with large changing mat.

If this is not something that you offer already, and you’re not sold on the need by now, here are few bits of useful information.

There are over 11 million people with a limiting long term illness, impairment or disability in the UK.

Any one of whom could have additional personal care requirements like Hadley.

Disabled people spend over £12 BILLION a year, so surely just on a financial basis, it make sense to install these facilities.

The Equality Act 2010 states that: service providers are required to make reasonable changes – including to the built environment – where a disabled customer or potential customer would otherwise be at a substantial disadvantage. 

Surely having to be changed on a dirty toilet floor is more than a substantial disadvantage? 

The Equality Act also requires: that service providers think ahead and take steps to address barriers that impede disabled people.

They should not wait until a disabled person experiences difficulties using a service. 

I believe we are campaigning for facilities that are already a corporate social responsibility. 

There are currently over 780 official Changing Places facilities in the UK – which is brilliant!

But we need so many more.

To put it in perspective, the nearest one to our house is over 15 miles away! 

I am hopeful, that by raising awareness of the need and by celebrating those who get it right, we will see a brighter future….

Where people like Hadley are no longer excluded from everyday activities, we often take for granted.

If just one of you goes home today thinking about how you can make a change, then the world will be a slightly better place tomorrow for my little boy, and the millions of other people living with these challenges. 

Thank you so much for listening. 

If you would like to join Sarah in campaign for better toilet and changing facilities get in touch using our contact form.

I’m hacked off.

I’m hacked off because we (the special needs parents), have to fight for everything.

We have to fight for more disabled parking spaces.

We have to fight to get our children the right support at school.

For the right diagnosis.

For a diagnosis.

For equipment.

For acknowledgment that we even need equipment.

For suitable changing facilities when we are out and about.

Which is surely just a basic human right, no?!?

We are fighting supermarkets to provide special needs seats in their trolleys so we can do something as simple as buy our groceries without the need for a babysitter!

Why do they want to make it hard for us to give them our hard earned cash when the cost of providing such seating is minimal to them in the big scheme of things?

And, from a public relations point of view, is going to gain them huge gold stars as well as more customers?

We have to fight for housing.

For adaptions.

For understanding.

For support.

We have to bloody well fight for everything!

Does the world not think we have fought enough?

Having a child with any additional needs is hard. It’s really hard.

Many of us have endured hideously difficult introductions to the world of parenting and have been fighting since the day our little beauties arrived on this earth.

How is it fair that that fight just seems to continue.

That unless we are very lucky, it will continue forever.

That we are unlikely to see a world that changes that dramatically in our lifetimes.

Yet it makes us tough. And it makes us focused.

And it makes us want to fight more… and so I am fighting for all of us.

I am going to make a difference, even if it’s a small one. I will challenge my local supermarkets.

Local businesses and anyone who will listen, to make a change.

I will challenge them to understand that there are thousands of families who contribute an incredible amount of money to society, who simply cannot access every day life properly.

And I will challenge them to do something about it.

If just one of you who reads this decides to challenge just one business, organisation or person who is making your life more difficult – whatever it may be – from lack of changing facilities to abuse of disabled parking facilities – then we will slowly start to build a world that our children can enjoy growing up in.

I hate being so negative all the time.

And I beat myself up for it as we should always try to see the positives in our situations right?

But some days, it feels like the world is against us.

Now please help me down from here.

I need to go to bed. X