Tag Archives: Families and parenting

Letter to Louis: a mum’s story of her son with CP

“I’ve never quite known how to explain what our daily life is like. I wanted to write how it is in order to give others a greater understanding of disability and caring. And to be totally honest, I wanted to write something that would make people consider being Louis’s friend. So here is me introducing you: Louis, this is your story. Readers, this is my son.”

Fighter

Alison White’s memoir of bringing up her son Louis covers the first 18 years of his life. It’s written to him, even though he doesn’t have the capacity to understand his mother’s writing.

From the beginning Alison White is brutally honest. When she first sees her son in the intensive care baby unit, she thinks, “I would not have chosen you.”

The name Louis means ‘fighter’, according to the baby names book Alison and her partner Greg used. It proves to be prophetic. His first Christmas present is to be able to come off oxygen and to bond with his mother for the first time.

The things people say

One of the things that I found most shocking about the book is the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child:

  • The woman from the parents group talking about how ‘perfect’ her own child is.
  • The nurse who calls Alison ‘Ermintrude’ when she brings her expressed milk to the intensive care baby unit.
  • “Look at him. That’s an apology, that is!” says another nurse.
  • From Louis’s own grandmother: “There’s something not quite right about him. He’s not like any baby I’ve come across before.”
  • The homeopath who attributes Louis’s cerebral palsy to his father not being present at the birth.
  • The shoe shop worker who says that it is not her company’s policy to sell shoes to people who cannot walk in them!

Celebrate every step

Scope used to have a child development tool called Celebrate Every Step. This was a way of marking the tiny developmental milestones that were missed by mainstream ways of assessing child development.

After so many battles, Alison begins to see the way forward:

“All those things that we take for granted like being able to walk, play, write, get dressed, wipe our bums, brush our teeth, tie our shoelaces, chew our food, blow our nose, lick our lips. You still can’t do any of these things. We help you to do everything and little by little, at a pace that is imperceptible, we make progress with some things. Other things will never come. The damage is done.”

Alison finds a music therapist from Nordoff Robbins who unlocks Louis’s love of music. Louis can sing his own name before he can say it. As Louis begins to express himself, his personality and his obsessions come to the fore. He likes to carry maps with him wherever he goes. His bedtime routine consists of his mother having to pretend to go for a bike ride before he can settle.

Presents of life

Louis’s birthday wishes become more and more eccentric: for his 10th birthday he asked for a Henry Hoover; for his next he wants an escalator! One Christmas he asked for a Soundbeam, an inclusive musical technology system used in sensory rooms which costs thousands of pounds. When his mother tries to explain that this is impossible, his response, which could almost be the motto of this book, is: “You could try.” Alison does try. She contacts Soundbeam who offer to lend a system over the Christmas holiday so Louis does get his wish: he gets a Soundbeam for Christmas!

18 plus?

For his 18th birthday, Louis and his mum get an unwanted present: no more respite.

“As you turn at 18, as we were told, are respite has been cut to nothing, gone. Yesterday you were a child and today you are an adult and everything will change with social services again but nothing has changed with you. You still need all of your care, but nobody seems to be able to tell us anything. We are not going to worry. We are having a party and your parties are known as the best.”

Letter to Louis by Alison White is published by Faber on 2 February 2018.

Win a copy of the book!

We have 10 copies to give away. To be in the draw,  post the things people say to parents of disabled children on our online community. 

Terms and conditions

Only one entry per person will be counted. The prize draw closes on 10 February 2018 at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter.

Through The Eyes of Me – Writing a book for my autistic daughter

Jonathan Roberts has written a story book about his daughter, Kya, who was diagnosed with autism. After a great reaction to his book from Kya’s family and the professionals who work with her, Jon’s book has just been published by Graffeg.

Getting a diagnosis

We adopted Kya at 17 months old. We realised fairly soon that there were differences between Kya and other children of her age and we initially put this down to post adoption attachment issues. Kya’s Health Visitor raised her concerns and referred her for an assessment with regards to her development delays which resulted in a diagnosis of severe autism.

As Kya’s parents we’re blessed –  she is a lovely, placid happy child and I wanted to capture her lovely little quirks before we forgot them so I started to record them. I started writing things down and showed my wife Sarah. She liked them and we thought it might make a little book.

When Kya started mainstream school, the children in her class asked the teacher questions about her, like:

“Why is Kya allowed to run around?”

An illustrated page from Kya's book. The text reads: I am always on the move. I don't care for sitting still. I love running.

Kya has lot of energy and finds it difficult to sit still. It’s hard for us to keep up with her sometimes, particularly when we are out shopping and we forget her rucksack with reins. Luckily, we live near some long, sandy beaches and open spaces where Kya can run around in a relatively safe environment but we still have to keep our eye on her all the time! She doesn’t understand danger so she’s always climbing stairs, railings and on top of kitchen work tops. It can be very tiring!

“Why won’t Kya talk?”

She has difficulty concentrating and finds it hard to communicate. She has delays with her speech and often babbles but she is learning a few words now. When we read the book to her, she points and says, “Kya!” and looks at me for approval. She loves looking at the book but she has a tendency to rip things up, it is like her sign of approval, as if she is multiplying things as opposed to destroying them.

Picturing a book

And illustration of Kya and her Dad swinging her aroundI wanted to create a nice, pretty looking and simple to read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully.  We got in touch with Hannah Rounding, who was spot on with her pictures even though she had never met us!

We hope Through the Eyes of Me will help siblings, classmates and anyone who knows of someone on the autism spectrum.

Order the paperback and add ‘Scope’ as coupon code to get a 20% discount on the normal price of £6.99.

Check out our Pinterest board of kids books for siblings of disabled children.

My daughter was thrown out of a pub for being disabled

Last weekend, after celebrating Brighton Pride, Jenny’s daughter Charlie was asked to leave a pub because she is disabled. Jenny chose to share their experience in a post on Facebook and the response has been amazing, with messages of support coming from hundreds of people. The post has now been shared over 1000 times, as well as in the media.

In this blog Jenny shares her story, why she felt she needed to write it, and why raising awareness of invisible disabilities is so important to her.

My 19-year-old daughter Charlie has two chromosome abnormalities and is a bit of an enigma. On the one hand, she is very innocent, child-like and can’t read or write but, on the other hand, she has a great vocabulary and wants to be a teenager, just like other young people her age. She will never be able to do things on her own because she is vulnerable and unaware of consequences. Anyone who has met Charlie will know that she is one of the sweetest people you could ever wish to meet.

On Sunday night, Charlie was thrown out of a pub in Brighton – for being disabled. There was only one other customer in the pub as everyone else was sitting outside on the benches. As we were being served, I suddenly noticed that Charlie was crouching quietly on the floor with her hands over her ears. She said it was because a sudden burst of loud music had startled her. The barman said she would have to leave.

I was shocked and explained that she was disabled, that the music had temporarily scared her but that she was okay now. He insisted that she was not welcome no matter how calmly I tried to explain why this was wrong. We had no option but to do as they asked.

Why I chose to share our experience

This was the first time I’d written about something like this. Brighton is quite an inclusive place and Charlie and I are quite well known. We’ve never really had much experience of negativity. When we were told to leave the pub, I tried my best to explain why it wasn’t acceptable in a calm, friendly manner, but they were just completely dismissive. They said “Right you’ve had your say, now you have to leave”. I was frustrated and sad, more than angry, about the injustice of it.

It affected Charlie very badly. She was devastated. She said she wanted to die, she said that she didn’t want to be disabled. She just thought everybody hated her. And I thought people don’t hate her, people really, really like her. So I just wanted to put it out there because it was so unfair and I thought people who knew Charlie would be able to say “Well Charlie’s lovely” because she is.

Headshot of Jenny and her daughter Charlie smiling with the sea in the background
Jenny and Charlie smiling for the camera

The response has been amazing

I just thought it would be shared among my friends so it’s very strange now that it’s been shared 1000 times! Charlie’s had so many amazing comments from lots of people, those who know her and people who are feeling the indignation on her behalf.

Charlie can’t read or write and never will be able to, but I’ve been able to read out the comments that people have left. It was amazing to get those supportive messages. And what has been particularly uplifting but also sad, is to see that so many other people have had similar experiences, all over. Not just in pubs but with the general public.

I want to raise awareness of invisible disabilities

Things like this do seem to happen more with invisible disabilities than physical disabilities. As I said in my Facebook post, at the pub I asked if he’d discriminate against a wheelchair user and he said “Of course not” and I said “Well what’s the difference?”.

Life can be very difficult. For instance, this morning, although Charlie is 19 and a half, I’ve had to shower her, wash her hair, make all her food and drink. I’ve had to rescue the microwave twice. Sometimes it’s exhausting and to have to also cope with unnecessary discrimination as well, it’s so completely unfair. Why shouldn’t a disabled person be able to live their life the way they want, just like any non-disabled person?

If this is a chance to stop this happening again, I’m going to do all I can

Charlie smiling at the cameraQuite a few people have said that this might set a precedent, which would be wonderful. Hopefully invisible disabilities will be recognised and accepted in the same way that visible ones would be. I hope people like Charlie and other disabled people, don’t have to go through this again. It would be wonderful to think they can just live their lives without anyone discriminating against them.

Making people aware is a hugely positive thing. I’m not somebody who would normally go out and ‘sell ourselves’ but if this is a chance to make sure something like this doesn’t happen again, I’m going to do all I can. Because that’s the only way change is going to happen.

You can read Jenny’s full post here. If you have a story you would like to share, get in touch with Scope’s Stories team.

Update

The Mash Tun pub have investigated this incident and the staff member involved has been dismissed from their job. The Mash Tun are now working with the disability organisation Enable Me to improve the way they treat their disabled customers. Jenny has also released a new statement on Facebook about what happened. 

 

Come on supermarkets – please stock nappies for disabled kids

Laura is a mum on a mission. She’s noticed a big gap in the market, and is campaigning for supermarkets to start stocking nappies in larger sizes. Here she tells her story. 

“Nothing worth having comes easy.”

Laura and her son Brody smiling on a rollercoaster rideMy life (well, house) is full of quotes. So much so, my best friend jokes with me about it. Still, on the days I feel like I’m fighting a lost cause, this one drives me.

Around a month ago, I started a change.org petition asking leading UK supermarkets to consider manufacturing or selling larger sized nappies, for incontinent children with additional support needs.

There are thousands of children in the UK, older than “typical” children, who are not potty trained. Naturally, as a result they require bigger nappies. Are they easy to find? Of course not!

My son Brody

A close-up photo of Brody amilingBrody has Global Development Delay, epilepsy, hypotonia and hypermobility. In our special world, he is known to a large community as a SWAN – not yet diagnosed with a syndrome to explain his disabilities. Brody is a tall four-year-old. He wears the largest nappies available in supermarkets (– 6+),  but they are fast becoming too small for him. Frustration with this led to my campaign.

Whenever my campaign is posted somewhere on social media, I get people commenting with recurring suggestions: the continence service, pull ups and cloth nappies. Let me explain why, despite this service and these products, I strongly believe there is a huge gap in the market for bigger nappies in stores.

What’s currently available

Brody has recently been referred to the continence service and hopefully, after a waiting time (my friend has been waiting six months so far) we will receive a set amount of nappies per day. These will arrive in bulk. The continence service is great and very much needed for families like ours. However, the service itself is inconsistent, varying greatly depending on where you live in the UK. This becomes more apparent, the more I speak to others. For example, I’ve heard from families who have children with autism who aren’t entitled, families who are only allowed two nappies a day, and families who aren’t eligible for the service until their children are six to eight years old. One woman told me her child has severe chronic constipation, requiring medication and at least 10 nappies daily. But she’s not yet entitled to any help from the NHS.

Pull Ups, which come in slightly larger sizes, are designed for children in the process of potty training. Hence there are fewer nappies in a pack and the absorbency isn’t as good. They’re not adequate for a child who is doubly incontinent. Not only this, it would cost a small fortune for parents to buy Pull Ups, as one pack may last only a day or two.

Cloth nappies may suit some children with additional support needs, and there are some fantastic companies where parents can buy these online. However, this isn’t a best fit solution for every parent and child for many reasons (although, I’ve found a lot of cloth nappy fans will argue this point).

Life costs more when you’re disabled

The simple truth is thousands of parents require larger nappies because their children are either ineligible for the continence service, or require more nappies than they receive. As such, they are forced to buy online because they have no other choice. These nappies come with the classic ‘special needs’ price tag – overpriced! The sad reality is – life costs more when you’re disabled.

Online shopping can also be inconvenient because you have to wait for an order to be delivered. Not as simple as popping to your local supermarket when you’ve run out of a product.

Disabled consumers are a big market

Brody on a red plastic rockerIf you are in my shoes, you’ll be all too aware that people don’t think about these things unless it affects them. However, it really shouldn’t be this hard. The Extra Costs Commission report noted that there are over 12 million disabled people in the UK – that is almost 1 in 5 of the population – and our households’ expenditure, the so-called ‘purple pound’, totals £212 billion a year. That’s a lot of money. And high street businesses could take advantage of it.

I strongly agree with Scope that by sharing information about our needs and expectations as shoppers, and by being more demanding as consumers, companies will have the market data to serve us better. We need to shout loud and let our voices be heard!

We are a community, used to fighting battles. Please fight this one with me. Sign the petition and share it with your friends. Maybe together we can make a difference – one that would benefit many families.

My message to the supermarkets?

You have the opportunity to take the lead and cater to a huge consumer group – one that is often disregarded. Please listen. This is about supply, demand and inclusion. It’s simple – there is a demand for this product and you can provide it. Just take M&S as a wonderful example. Grandmother, Rita Kutt wrote to them and explained the need for larger sized clothes with popper buttons for disabled children. They listened! We are consumers – like everyone else – that should be heard.

What do you think? Could you benefit from being able to buy this product in a supermarket near you?

The Extra Costs Commission has called for disabled consumers to be ‘bold and loud’ just like Laura.

Consumer power! M&S release new clothes range for disabled kids

Rita’s adorable young grandson Caleb has cerebral palsy. He needs nappies, and he’s also peg fed through his stomach, so accessible clothing with poppers is pretty essential. Rita noticed a huge gap in the market for affordable clothing for older children, and contacted Marks and Spencer to see if they could help. 

This blog has now moved to our online community.

Join Rita on our online community where she tells her story. 

I published a book so others can walk this road with me

Rachel is mum to Sam, who has severe cerebral palsy. She writes a blog, and she’s just published a book called The Skies I’m Under.

She’s doing a Q&A on our community this week – feel free to come and say hello! Here Rachel talks about her experience at the time of diagnosis. 

Memory is a funny thing. I can tell you the name of the boy I fancied aged nine (Andrew Jafferies) and sing you the ‘Milkyway’ advert from start to finish, but I can’t tell you why I just walked into the living room. It seems my brain is very good at identifying important information and promptly forgetting it.

A day I’ll never forget

There are some things though I will never forget. Like the day I was told my son, Sam, had been born with severe brain damage. Three years ago, I set off on a journey of remembering. I sat in the summerhouse in my garden and started writing about my early days of motherhood. I wasn’t just sketching out what had happened but I settled there, and filled in the hues and shades of a time when my life was turned upside down.

Last month, I published my memoir about becoming the mum of a severely disabled son, so now others can walk this road with me. Here’s an extract from The Skies I’m Under. It tells of how my husband, Tim, and I were told the results of an MRI scan that confirmed Sam’s brain damage.

“I’m afraid it isn’t good news.”

‘The doctor in front of us finally stopped, swung open a door, and showed us into a small office. We entered clinging onto our hopes of a miracle, with our dreams intact. The room resembled a large cupboard, absent of a two-seater sofa or box of tissues. With the small room void of natural light, limited space and haphazard layout, the doctor was required to perch on the edge of a desk as she began to talk.

“I’m Doctor Rutherford,” the slight woman explained. She introduced her colleague, whom we had seen earlier that day.

“I’m afraid it isn’t good news. The scan shows severe brain damage.” Her words were spoken lightly, yet the room began to close in. She gently and calmly explained in detail how the scan showed Sam had been very unlucky.

I sat rigidly and gazed across at the scan. I began to see a withered, shrunken brain, with deep darkened rims of space where healthy tissue should have been. She explained Sam’s brain damage was both unusual and extensive. Not only had he suffered damage to the white matter but also the grey matter.

“From the scan we can only assume that numerous insults occurred in the time leading up to Sam’s birth and then again at delivery,” she informed us. Her words became a blur of white noise as my mind drowned out the truth; replaying all the times I may have allowed this catastrophic event to occur.

How had I missed my baby struggling inside me?

How had I carried on singing, stripping wallpaper and going about my daily life, when the fragile being inside me was suffering repeated insults?

What kind of mother was I?

Refocusing on the words being thrown around the room, I brought my mind back to the small office and information I wanted to ignore.

“All parts of his brain are affected. He will live with cerebral palsy… resulting in learning difficulties… as well as physical limitations.” There was nothing to say, so we simply nodded, indicating our readiness to hear more.

“He will have complex needs and it seems the areas affecting temperature regulation and vision are particularly damaged.”

Tim bravely asked questions and I was surprised at his ability to talk with a steady voice. The doctor remained vague. We weren’t told he would never walk, talk or eat, but it was indicated that each of these things was in jeopardy.

Our future plans were erased

It was as though the doctor conjured up a paintbrush dripping with brilliant white emulsion and began covering the wall of our future. What had once displayed vivid colourful strokes of our hopes, dreams and future plans, was being abruptly erased. The blank canvas that remained felt daunting rather than full of potential. Nothing could be assumed, and nothing could be expected.

A bomb had exploded in the middle of our lives splintering our world into thousands of tiny pieces. Like walking wounded, we staggered out of the hospital holding onto each other, dazed and bewildered. The words spoken over us rang in our ears. As reality began to sink in, I was surprised at the magnitude of my shock. I simply hadn’t prepared myself for hearing my little boy had profound brain damage.’

A different outlook

I couldn’t imagine what my life would become and how hard it would be. I struggled picturing a world where my son was disabled and my home full of disability equipment. Today, I appreciate that the most picturesque views are often found down a bumpy road. I couldn’t foresee neither the heartache, the love, nor the smiles.

Win a signed copy! Ts&Cs

Want to win a signed copy of Rachel’s book? To enter, sign up to the community and comment on Rachel’s discussion. Only one entry per person. The prize draw closes on 1 February at 10am. The winner will be chosen at random after this date and notified via email. The book can only be posted to addresses in the UK and no cash equivalent or alternative prize will be offered.

Rachel is doing a Q&A on our online community from 25 to 31 January. You can ask her about her experiences and find out more about her book. 

My experience as a grandparent of a disabled child

Vicky Harris is Face 2 Face Co-ordinator for our befriending service at Liverpool’s Alder Hey Children’s Hospital. She believes that grandparents of disabled children, as well as parents, need access to emotional support. Here Vicky shares a very personal experience of disability in her family.  

I have been blessed in my life to have three children and three grandchildren, but I feel there may be more grandchildren to come in time! My eldest child, who’s nearly 30 was born with a very rare physical disability which at times has been emotionally challenging. She has grown into a beautiful adult who I’m very proud of.

Nearly eight years ago my second grandchild Jack was born to my daughter Sammie who was 20 at the time. I remember being so
excited as I had a granddaughter who was two years old, and I was now lucky to have a grandson too. The first time I saw him, he looked so beautiful but I knew something was wrong. Within a wBaby Jack asleep in a blue cardigan and hateek we received the news that Jack had catastrophic brain damage. I have to say I felt devastated. Devastated for my daughter and her partner, and devastated for Jack.

I loved him so much, part of me hoped the doctors had made a mistake but I knew they were right. I was trying to find light in what was a very dark time. We spoke to the consultant and then came crashing down again when we were told he might not live beyond eight years old. He would be completely reliant on my daughter for all his needs. My daughter hurt so much, I wanted to take her pain away and make her feel better but I knew I couldn’t.

As a family, we rallied round. I remember Jack started drinking from the bottle, which the professionals had feared he may not do. This offered us hope, but sadly it didn’t last and he had to be peg fed to help him thrive. We were always looking for hope, then hopes were dashed along the way. Picking ourselves up, loving each other, caring, scared the day we were dreading would come.

As a grandparent I felt almost useless, sitting back and watching the journey unfold, knowing the outcome one day would be having to say goodbye to Jack. I know my daughter hurt, she was a wonderful mother to him. I know she loved him with all her heart, and I wondered if she’d be able to let him go when that time came.

I wanted to fix the situation, change it, make it better. Watching Jack have many fits, hospital visits, but also trying to live this normal life. Enjoying every day, loving him every day, always mindful of how precious his life was. As a family we’d already experienced disability. We knew in the grand scheme of life that disability is not the end of the world. Yes, it can seem a different world at times, but none the less a good life can be lived. With Jack it seemed so final, and we just hopeJack at three years old strapped into his pushchair, wearing a shirt and smart waistcoatd he would stay strong for as long as possible.

My granddaughter Jess loved him so much, she would pretend she was reading him a book and then poke crayons in his ears! She seemed to understand he was special, her bond with him was so beautiful to see.

Sadly, the day we had dreaded arrived all too soon. Jack had pneumonia and was on life support for 10 days when it was agreed it should be withdrawn. My heart broke watching my daughter be so brave in letting him go. When we said goodbye, Jack was only three years old.

I have such immense pride in my daughter, I wanted to spare her the pain, spare her the hurt but no one could have loved him more than she did. We were all blessed to have Jack in our lives, and we’ll never forget him.

Vicky will be starting a grandparents drop-in group in Liverpool next year. Would any of you grandparents of disabled children be interested in attending something like this, where you can meet other grandparents, talk about your experiences, and gain support? Please let us know. 

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Vicky has raised here, and answering your questions.

Descriptive praise – how to get your child to cooperate!

This is a guest blog from Noel Janis-Norton, our online community’s parenting advisor. Here she explains how to use a technique called ‘descriptive praise’ to get your child to cooperate. 

One of the most frustrating things about being a parent is the endless repeating and reminding, just to get our children to do what they’re told. In the heat of the moment it’s easy to forget that children aren’t born knowing that they’re supposed to do what we tell them to do. Cooperation is a habit that they need to learn.

Mum and dad playing at a table with their young disabled daughter

My definition of cooperation is that our children do what we ask them to do the first time we ask, and without a fuss. Thankfully, it’s never too late to guide children and teens into the habit of cooperating. Of course children aren’t robots, so they’ll never be perfect. But it really is possible for children and teens to get into the habit of cooperating 90% of the time. That’s what the programme I’ve developed – Calmer, Easier, Happier Parenting, can help you achieve.

If your children tend to ignore your instructions, or if they argue or say “in a minute,” a good question to ask yourself is, “how can I motivate them to want to cooperate?” You’ve probably noticed that threats and telling off don’t actually motivate, but luckily there are more effective ways. One useful technique is descriptive praise. This is the most powerful motivator I’ve ever come across.

Two young brothers and their sister playing with multi-coloured plastic bricks

Descriptive praise is the opposite of how we usually praise.  Generally, we try to encourage good behaviour by using lots of superlatives: “Terrific!”, “Wow!”, “Brilliant!”, “Amazing!” But superlative praise is so vague and exaggerated that the child is often unclear about what was so great.

Descriptive praise is far more effective. Just describe exactly what your child did right or exactly what they didn’t do wrong, being very specific:

“You did what I asked the first time. You’re cooperating.”

“You didn’t say “In a minute”. I asked you to set the table, and you did it straightaway, without any complaining.”

Mum kneeling on the floor hugging her son

In my book, Calmer, Easier, Happier Parenting, a mother explains how descriptive praise motivated her six and eight-year-old sons to become more cooperative:

“The day after Noël’s seminar, I told my boys to wash their hands for dinner. The younger one hopped up to do what I said. I jumped in with descriptive praise, saying “You’re a first-time listener.” As soon as I said this, his older brother got up, saying “I’m a first-time listener too”, and rushed off to wash his hands. I hadn’t expected my words to have such an effect. The next day my six-year-old washed his hands and came to the table, saying “Look Mum, I’m a no-time listener because I did it before you even asked!”

When you make a point of mentioning each time your children do what you ask the first time, soon they will be cooperating more and more. You can use this strategy to improve any behaviour that’s problematic.  Descriptive praise brings out the best in children, even in teenagers!

In this short blog I can only scratch the surface of this useful parenting tool, so you’re bound to have questions. In my CD called Descriptive Praise, The #1 Motivator, I answer all the questions parents have about putting descriptive praise into practice, and give lots of examples you can use to improve a wide range of family issues.

Dad mixing cake mixture in a bowl with his young daughter with cerebral palsy

As important as descriptive praise is, it’s not the only strategy you’ll need to bring out the best behaviour in your children and teens. But it’s the first strategy. So for the next four weeks, take the Calmer, Easier, Happier Parenting challenge and start using descriptive praise whenever you notice your children doing something right or even any tiny improvement. You’ll see positive results sooner than you can imagine.

Got a question for Noel? Ask her on our online community

10 tips to get active with your kids this summer

The summer holidays are a great chance to practice getting more active ahead of Steptember, an inclusive event designed to get you moving more, whilst raising some money for Scope!

Here are 10 tips to get more active with your children. 

1.       Go swimming

This is a great activity for all kids, and can be very therapeutic for disabled children. If you’re lucky with the weather, an outdoor pool or Lido in the sun is even more fun!

Young woman riding a bike through a park

2.       Go on a bike ride

It’s the closest thing to flying, and even if you’ve not done it for ages, you never forget!

3.       Camp out

Even if it’s just for one night, it will mean you’re out in nature exploring together as a family, and bound to be a lot more active than when you’re at home.

Young disabled girl dancing4.      Dance off

Make a playlist of all your family’s favourite upbeat songs and then have a dance off!

5.       Fly a kite

Everyone loves a bit of kite flying. You could even make one together the day before.

6.       Walk the dog

Don’t have one? Borrow a neighbour’s or sign up to Borrow My Doggy.

Family of four - mum, dad, and two daughters, one using a wheelchair, laughing together in a forest7.       Go on a family hike

The great thing about the UK is that you’re never too far from a National Park, and a lot of them have many accessible routes and special event days too. You can make it even more exciting by planning a lovely picnic.

8.      Make a den

All kids love to make dens. Why not find some old items around the house to decorate it with, and get constructing together in the garden or local park?

Four young children racing in a garden
 

9.       Have a race

This could be as simple or complicated as you like. Egg and spoon race? Wheelchair race? Family relay race? Sack race? Whatever you fancy!

10.   Put ideas in a hat!

Can’t decide between yourselves? Each write your active idea down on some paper, pop into a hat and then let your kids pick one out. It’s a great way to avoid arguments and keep things fair!

You can also see our tips for a stress-free summer holiday, and games all children can play

Feeling ready to sign up to Steptember

Are you desperate for some zzzzZZs?

We are currently running a sleep appeal. Has your child ever had problems sleeping? Read more about keeping a sleep diary.

Parents of any newborns will know that sleep is a rare commodity. But did you know that 80% of disabled children experience sleep issues? And these can last for many years.

Sarah is one mum who was experiencing extreme sleep deprivation. For five years her daughter Florence, who has autism, would regularly wake up to seven times during the night. It meant Sarah was often surviving on just two hours sleep.Woman sitting on the floor looking stressed outside a child's bedroom door

“She is overtired – I am tired, stressed, angry….”

Sarah was referred to Scope’s Sleep Solutions service. Thankfully, our sleep practitioners work with disabled children and their families to find practical solutions to sleepless nights.

She was encouraged to create a new sleep routine, after learning lots of practical dos and don’ts. These included a later bed time, dimmed lights, a warm bath, pyjamas upstairs only, and some massage. It ended with the last word being said to the child:  “sleep”. Amazingly, after only three weeks, things started to drastically improve.

“The new routine needs to start later – Flo doesn’t need as much sleep as I thought!”

Sarah kept a diary during the sleep programme, and here’s how she got on…

Week 1

Handritten sleep diary that shows how many times  the child was getting up during the night for the first week of the sleep programme, seven in some cases“I am so tired….I called Maxine, and she kept me going.”

Week 2

Handwritten sleep diary for week two of the sleep programme, says "Feel a lot better already, is this actually working?!"

“Straight back to bed, no engaging in conversation, give her a kiss, tuck her in, and last word is ‘sleep!'”

Week 3

Sleep diary that has much improved sleeping patterns from the child, and says "I feel like I have my energy back!"

“I feel like I have my energy back!”

You can watch our film featuring Sarah to hear more about how she got on.

Did you find this information useful? Please donate to our sleep appeal so that more families of disabled children can get the support they need. 

If you need any sleep tips, or have any tips you’d like to share with other parents, visit our online community.