Tag Archives: mum

I’m just like any other mum – disability doesn’t change anything!

Marie and her husband Dan are the proud parents of Mark, who’s three years old. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. To mark Mother’s Day, Marie updates us on their past year –  Mark has been coming on in leaps and bounds, and there have been changes for Marie and Dan too.

Mark has my independent streak

Mark has stopped being a toddler and is most definitely now a fantastic, handsome and intelligent little boy. He has absorbed my fierce independent streak and most household tasks now echo with ‘No, Marky do it!’ in his own special little voice. His increased independence makes life easier physically – all the jobs I couldn’t do like picking him up are now in the past – but we have new challenges, how DO you discipline your toddler when he’s your own height? It’s a good job I can still shout and hold the purse strings!

One of his favourite things (at the moment!) is cooking, and this is where our fantastic adapted kitchen comes in; it means I can cook for the whole family and Mark can get involved too. He loves making gingerbread men! We designed the kitchen ourselves with a number of clever adaptations using standard materials to make it as cheap as possible – things like using wall units as low-level cupboards to give my chair room to fit underneath. It’s amazing how a few simple bits of lateral thinking make all the difference!

While the more sedate things are mummy jobs, the active things are daddy’s domain. Mark recently started swimming, something that he can do with Dan while I watch. I can swim (I’ve been known to flap about and propel myself up to 800 metres, although I won’t break any records!) but the idea of going in a bustling, busy public pool with Brittle Bones doesn’t sound too smart. I leave that one to the boys.

Marie and her 3 year old son Mark sat at table

Returning to work

And Mark definitely is a boy now, we registered him in our local preschool for 3 mornings a week starting back in January – the start of his funded time. He adores it! Whilst we’ve always had him out and about doing things (Start the Art, Mini Strikers, Rugby Tots to name but a few) since he was about 6 months old, he really has responded well to the structure of preschool. The loving and nurturing home we have created for him has worked, he’s ahead of his age targets across the board.

Mark now being at preschool has left a hole in my life, and I’m never one to sit still doing nothing. I’d get bored too fast. So, I decided to use my degree (First-class BSc in a number of subjects including Social Policy and Child Development) and my long experience in the health and social care field as both a recipient and worker to get a job where I can really make a difference. Such an opportunity arose and I’m proud to say I am now a college tutor, tutoring a wide range of courses. It’s brilliant! I get to bring a unique view to the table, helping students (e.g. care practitioners) see the wider issues at play beyond just learning the course. I hope they are learning a lot! Mark can also see me earning (as he puts it) ‘pennies for rides!’. I guess that returning to work as your child gets older is just another one of them milestones and I see myself as just like any other mum despite the 200+ broken bones, life-saving surgery as a teenager, the fact that I’m fully wheelchair dependent and have daily chronic aches and pains from years of physical trauma.

Dan has a new job too. Sadly he was made redundant following a very successful career in space research – he was one of the team who landed a spacecraft on a comet in late 2014. Google ‘Dan Andrews Rosetta’ if you want to read more! Sadly the end of the mission meant an end to the funding, and he lost his job. That was, naturally, a worrying time for us all. Not only was he job-hunting – he needed a company within a short commute distance to tie in with family, with normal office hours and that would recognise his transferable skills. He struck gold and is now working in the fascinating field of special missions aviation. Mark should have fun telling his school friends about what Daddy’s done for a living!

Marie holding a tray of gingerbread men while Mark sprinkles on flour

Remembering my own mum

So that’s it from us. A year of changes for us all and a lot of adventures! We like to think we’re giving Mark the best upbringing we possibly can. He’s always doing things and he most definitely doesn’t see me as anything other than ‘Mum’! It is still hard doing this without my own mum, there are countless times when I want to just call her and ask ‘What do I do if he…?’ or to share the latest milestone met. Readers who read my last blog will know that she passed away very suddenly in 2012 and this will be another emotional Mother’s Day for me. As well as all my other health conditions I am now also battling prolonged grief disorder but I am using my strength to ensure I am making each day count and living life to the full with my lovely little family. All I can say is that my upbringing from her definitely stuck, I wouldn’t be the fiercely independent working mum and wife that I am today without her teaching me that my disability needn’t stop anything!

Find out more about Marie and her family – read her previous blogs. If you have a story you’d like to share, get in touch with the stories team.

“Shopping with my son and wheelchair in tow is a challenge.”

Claire is a mum to Daniel who is six. Daniel has profound and multiple learning difficulties. Claire has discovered a great solution for taking her son on their weekly food shop and wants everyone to campaign for better trolley access.

As a mum, taking my son to the weekly shop is a really common thing. But, shopping with my son and wheelchair in tow is a challenge.

I really struggle with both the standard and disability trolleys that are available in most supermarkets. Neither provides my son Daniel with the trunk support that he needs. It is also impossible for me to lift him in to a standard trolley. He’s just too heavy and tall now.

This leaves me with very few options. I could do my weekly shopping online, leave Daniel at home while I go shopping, or settle for buying what I can carry as I push his wheelchair.

I am sure that this is a familiar story to many parents of disabled children up and down the country. All of this changed for me when Sainsbury’s rolled out the GoTo Shop trolley to 650 of its larger stores.

The GoTo Shop is an adapted trolley for disabled children that provides extra postural and head support and a secure five-point harness. The GoTo Shop Trolley keeps Daniel safe and secure on our weekly shop.

The GoTo Shop Trolley has been a revelation for us, it makes life so much easier and Daniel actually really enjoys our shopping trips.

I think every family with this a disabled child should have the opportunity to use a GoTo Shop Trolley, this is the reason why I became a GoTo Shop Trolley Champion.

I am very lucky I have two Sainsbury’s stores near to me, but I like having choice. I love collecting my Tesco Clubcard Points, you can’t beat the Asda Mother and Baby Events, Marks and Spencer for little treats and Lidl fruit and veg every time. So you see, I’d like every supermarket in the UK and Ireland to have a GoTo Shop Trolley.

If you’re looking for a supermarket with GoTo Shop Trolleys, you can use the Firefly Finder App.

How to get involved

If like me you’re a parent of a disabled child, who would love to have the option of shopping where and when you want to, then we need to work together to tell every supermarket about the difference a GoTo Shop Trolley can make to our lives.

All you have to do is print out and add your name to this leaflet (PDF) and hand it in to your local supermarket managers.

Let’s raise awareness of the challenges we face in our daily lives as parents of disabled children. By showing how simple solutions can make a huge difference to families like ours we can encourage all our supermarkets to provide GoTo Shop Trolleys.

If you’re not a parent or carer of a disabled child, don’t worry! You can still get involved. Support the #GoToShop Trolley in #EverySupermarket by using our ‘Friends of’ leaflet (PDF).

You can read more about the Firefly Garden GoTo Shop Campaign on their website.

If I can help even one parent through difficult times, it will be worth it

Guest post from Rahna (above right), a befriender at Scope’s new Face 2 Face service in Redbridge and Waltham Forest, London. Befrienders offer emotional support to parents of disabled children – and they all have disabled children of their own. 

Rahna’s daughter Husna, 15, has a rare progressive condition called Friedrich’s ataxia.

My daughter Husna was four years old when she began to display the symptoms of Friedrich’s ataxia and Asperger’s syndrome, and we finally received a diagnosis when she was eight.

Rahna and 15-year-old Husna, a wheelchair user, outside their house
Rahna and her daughter Husna

Friedrich’s ataxia is a rare inherited disorder that causes progressive damage to the nervous system. We were told that Husna would gradually lose the use of her legs and arms, become blind, deaf, lose the ability to eat, swallow and speak.

There was nothing we or anyone else could do. For a parent, there is nothing worse you can hear.

How I felt

My world had fallen apart. I was dealing with my own emotions and everyone else’s. Every day was a struggle, and normal life as I knew it no longer existed.

I remember desperately wanting to speak to another parent whose child was going through a similar experience. It wasn’t until years later, when Husna started at a special school, that I found out that any kind of support existed.

Four female audience members applauding
Rahna (second from left) at the service’s launch earlier this month

I always had a lot of support from family and friends, but I felt unable to share all my feelings with the people around me – I was seen as the strength holding everyone up.

And although everyone was being so kind and helpful, no one really understood what I was going through, because they hadn’t been there themselves.

Why I became a befriender

Parenting a child with such complex issues is mentally, physically and emotionally exhausting. The day never comes to an end – it just merges into the night which merges into the next day.

You have to cope with so much, and to be able to speak to someone who has been through similar experiences, and share your anxieties and fears with them, really helps you feel less alone.

I first heard about Face 2 Face when I was approached by Andrea, the coordinator, at my daughter’s parents evening. Immediately I knew it was definitely something I wanted to do.

The training has been almost like being at a support group – everyone felt relaxed and we were able to express ourselves and talk about our personal experiences, knowing we were all in the same boat.

Group of befrienders holding their certificates
The newly-trained befrienders

I would have benefitted tremendously from a service like Face 2 Face if it had been available when Husna was younger. There were times when I was feeling very low emotionally, and really needed to speak to someone who understood.

If befriending means I can help and support even one parent through such an emotionally difficult time, then it will be worth it.

We’re launching four new Face 2 Face services in London this summer, and there are more across the country. Find a service near you.

“I wasn’t going to do it for charity this year. But I saw Scope is the official charity – it made sense!”

On 2 August more than 15,000 amateur riders will take to the streets of London and Surrey for the third Prudential RideLondon-Surrey 100 – a 100 mile route on closed roads.

700 of those will be taking part for Scope as part of our official charity of the year team, and one of those is Carl. He knows the route having taken part in 2014 and will be hoping the sun shines, unlike last year!

“Box Hill was okay. But Leigh Hill was shut, we had to go down a diversion because of the weather and that was horrendous. So I’m hoping it’s not like that!” A keen cyclist, he’s often out with his friends testing themselves on the local hills. But there’s nothing quite like event day. “I think if you ride for a charity, the support you get on the day is fantastic. I rode with a couple of friends who weren’t riding for charity and they were completely in awe of us getting cheered on.”

Carl’s reason for taking part is his nephew. Connor was born prematurely and has cerebral palsy. Connor’s mum, Lauren, explained how they initially found out about his diagnosis through their physiotherapist. “One day I got asked to fill in some forms – I asked her for help because it asked what was wrong with him and I didn’t quite know what to say. She just said “well it’s cerebral palsy” but nobody had actually told us that. We were quite shocked. We just thought it was because he was premature, that he would catch up.”

Connor has received fantastic support from the local community. His first play group had a sensory room and it was here that he first walked – a great milestone when the family had been warned he probably wouldn’t walk or talk. “He walked properly. He was nearly three when he started, the same week as his cousin who was one.”

The family first came across Scope when they were looking for help choosing Connor’s secondary school – the local authority recognised that Connor was bright and wanted to place him in a mainstream school. But Lauren and her husband, Kevin, felt that Connor progressed more with one to one support at a specialist school. Connor went on to prove them wrong, attending the local secondary school and gaining good results in his GCSEs. From speaking to Scope and another charity called Network 81, they were able to encourage the school to make the alterations Connor needed for his education, including having his lessons on the ground floor instead of up two flights of stairs. But now, the real work begins – deciding what Connor should do once he leaves college. Connor is keen to get involved in a local community project, the Harwich Mayflower project, where he can socialise and discuss doing an apprenticeship.

Cricket posterWhen Carl saw that Scope were the official charity for this year’s Prudential RideLondon-Surrey 100, he felt it made sense to do the full 100 mile route with us. “Technically I didn’t complete it last year. It was 87 miles; it wasn’t 100 (due to the weather) so I felt a bit of a cheat.” He’ll be continuing his training and fundraising over the next few months, including a cricket night called Essex Legends, hosted at a local venue.

There’s still time to be a part of Scope’s Prudential RideLondon-Surrey 100 team. Get your place today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike!

Now we know Leo’s going to be fine – #100days100stories

Leo is a happy three-year-old who loves to give hugs and kisses. He has cerebral palsy which affects his co-ordin​ation and movement. Leo’s mum Lyn has shared her experiences as part of Scope’s 100 days, 100 stories campaign.

Lyn helps three-year-old Leo with his homework
Lyn helps three-year-old Leo with his homework

It was a difficult birth and they took Leo off to do tests straight away. He had a chest infection and he wasn’t breathing right.

Leo had to stay in hospital until Christmas Eve, and we didn’t even go out to get presents that year.

Something wasn’t right

Over the next year, we noticed he wasn’t doing things that other children did. Then, when Leo was two, he had an MRI scan. When they told me it was cerebral palsy, I couldn’t take it in. I was really, really shocked. I blamed myself.

At first I didn’t want to let Leo out of my sight, worrying constantly that he was in pain. I knew so little about cerebral palsy. I needed help but I didn’t know where to turn. Thankfully, our paediatrician told us about Scope.

We needed practical support and advice

One of Scope’s support workers, Ian, came to see us and that’s when things really began to change for our family.

Ian drives a car. He has a great job. And he has cerebral palsy. I needed to see that Leo would be able to do all those things too. Ian gave us lots of practical support and advice about things. We could ask him anything and he’d tell us the truth, never skirting around the issue.

We’re optimistic for the future

Lyn and husband Kevin holding Leo and a baby
Lyn and her husband Kevin with Leo and their baby Lucien

These days Leo is so full of life, outgoing and gregarious. His confidence and sense of adventure are growing all the time.

When I think back to that first Christmas with Leo, I’m amazed at how things have changed. We don’t know what Leo’s future is going to be. But we’re so much more optimistic now. We know he’s going to be fine. If we hadn’t had support from Scope, we’d still be wondering.

Lyn and Leo’s Scope response worker Ian has also shared his story as part of our 100 days, 100 stories campaign. Read the rest of our stories so far and find out how you can get involved

How do you solve a problem like James? – #100days100stories

This is a guest blog from Holly Gaunt, 31, mum to James. He was diagnosed with autistic spectrum disorder at four-years-old. Now five, James attends a special school near their home in Portishead, Bristol.

In 2014, Holly began a blog about life as a parent of a child with autism. We’re sharing her story as part of our 100 days, 100 stories campaign

Since having children, I have become an expert in speed-shopping. In fact, unless I’m desperate, I try to avoid it altogether.

But today was an emergency: we had run out of milk and, more importantly, chocolate. I had no choice but to run the gauntlet, so to speak, keeping everything crossed that James would co-operate.

Unfortunately, about 10 feet Young boy sitting on a log on the grassinside Waitrose, James decided he’d had enough of holding my hand.

Before I could stop him, he had bolted around a corner and out of sight.

After trailing the aisles for several minutes in a panic, I eventually located him in the packed café.

I summoned my strength and managed to hoist him up over my shoulder whilst he screamed and smacked me in the face. For a four-year-old, he packs a surprisingly hard punch. I forced myself to grit my teeth and ignore his violent protest – experience having taught me that reacting would only egg him on.

At the checkout, I had to abandon my shopping several times to chase him as he tore off down the aisles, responding with a tight smile to the commentary of the checkout lady: “He’s a livewire, isn’t he?” I could feel about a hundred pairs of eyes on me and I knew exactly what they were all thinking.

And therein lies the ‘problem’ with James.  People don’t realise that he has autism, because he looks ‘normal’- so he is judged by normal standards. To other people, James is just naughty and needs a firm hand, which clearly I’m not giving him.

People with autism struggle to cope with sensory stimulation.Mum on the beach with baby and young son

For James, the supermarket isan overwhelming myriad of bright lights, colours, and noises forming a general din that makes him anxious and hyper. And because social norms mean very little to him, tearing through a crowded supermarket and throwing himself in the path of oncoming trolleys is not something he perceives as a problem.

James also lacks the necessary awareness of danger to prevent him from running off without a backward glance when something captures his interest. He isn’t being belligerent or ‘testing the boundaries’- that requires at least a very basic understanding of other people and their expectations.

Like our shopping trip, trips to playgroups, soft play centres, children’s parties, simple experiences that most parents take for granted are decidedly difficult for us. The common theme? Well, it’s other people. The staring. The whispered comments.  I could grow a thicker skin but that’s easier said than done.

The truth is that all of us, myself included, have at some point or another been guilty of judging a situation without knowing the facts. I hope that, by explaining autism from a parent’s perspective, I am helping to raise awareness of this misunderstood condition. Have you read this and learned something new? If you have, then I am one step closer to achieving that.

There’s lots of information on Scope’s website on autism and about being a parent of a disabled child.

Get involved in our 100 days, 100 stories campaign and read our stories so far.

“Without Ian I don’t know what we would have done” – #100days100stories

When Kelly was told that her two-year-old son, Lincoln, had cerebral palsy, she turned straight to the Scope helpline to find out more. That’s how she met Scope Response worker Ian, who was on hand to answer her questions. Kelly has shared her story as part of Scope’s 100 days, 100 stories project

Kelly holding up her toddler Lincoln
Kelly and Lincoln hugging

My husband Adam and I were told that our two-year-old son Lincoln had cerebral palsy in July 2014. Things suddenly made sense as we’d been worried about Lincoln for some time.

Knowing something wasn’t right

Since he was about one I’d been telling health professionals that he wasn’t sitting up or crawling like I thought he should be. I’d worked with children, mainly those about two-years-old, in a nursery for 10 years before I had Lincoln, so I knew what other children his age were like.

It was about this time that I contacted my doctor about it. She told me that it wasn’t anything to worry about and that he might just be a bit of a lazy boy! Apparently lots of boys that age can be a bit slower to develop.

My doctor told me to give him a month or so and then go back if I was still concerned. After the month there were lots more doctors’ appointments and health visitors. People just kept telling me that he was a lazy boy and that I should stop worrying.

Waiting for a diagnosisKelly playing with Lincoln on the floor

It wasn’t until he was two that a pediatrician actually told us that Lincoln had cerebral palsy. It wasn’t as much of a shock as it could have been to be honest.

I’ve got a friend whose son, who must be in his thirties now, has got cerebral palsy too.

I had been talking to my friend on Facetime one night telling her about Lincoln and she said it sounded a lot like what she had experienced when her son was growing up.

When the doctor gave us the diagnosis he said that we didn’t actually seem that shocked! We’d already had some time to think about it and let it sink in, so I suppose we weren’t too surprised in the end.

Information overload

Although we weren’t surprised, we didn’t actually know that much about cerebral palsy back then. Once we got the diagnosis we turned to the internet to answer some of our questions.

As a lot of people probably find, there’s just so much out there and a lot of it is rubbish and confusing. Thankfully our GP suggested we get in touch with Scope, as they could provide us with some information.

Ian gave us hope

I sent an email and Ian from Scope’s Response team got in touch with us. The first time he came and visited made such a difference. He was just brilliant. We just bombarded him with questions!

Ian was great at not overloading us with information, but he told us what we could read and what websites to visit in our own time. He actually told us that he didn’t want to just hand us a load of information, because we couldn’t take it all in at once.

Seeing Ian, who has quite severe cerebral palsy himself, really gave us hope. He drives a car, he gets out and about a lot, he works, and I thought that if he can do it, then Lincoln will be able to do it too.

Ian really was our biggest help. Without him I honestly don’t know what we would have done. Ian knows exactly where we’re coming from because he’s had to deal with it all himself. I think that helps, when you know somebody’s been through it themselves.

Accepting Lincoln’s impairment

Me and my husband have now come to terms with the fact that, yes Lincoln’s got cerebral palsy and yes it’s going to affect him for the rest of his life.

But it doesn’t make him a different child to the one he was before we got the diagnosis. He’s just Lincoln, at the end of the day. That’s just the way he is, that’s just him, that’s part of who he is.

See Ian at work behind the scenes of Scope Response.

If you need support or information, call the Scope helpline on 0808 800 3333.

Get involved in our 100 days, 100 stories campaign and read our stories so far

“I want my son to know there’s nothing he can’t do” – #100days100stories

Guest post by Kelly from Harrogate. Kelly’s story made headlines when her 12-year-old son Joe, who has cerebral palsy, couldn’t go and see a film at his local cinema because there was no wheelchair access. Ironically, it was National Disability Access Day – and the film was The Theory of Everything, the biopic of Professor Stephen Hawking. Here she shares what happened next.Kelly with Joe sitting in his wheelchair in school uniform

Our local cinema is a listed building and they cannot adapt it to allow wheelchair access to all its screens – fair enough. But when I phoned them to ask if they could perhaps show the film on an accessible screen over the weekend, they said no.

I was so shocked and sad. I am a single mum and I have four other children, so it takes a lot of organising and planning to do anything at the best of times.

So I had a rant on Twitter, like you do these days, and the BBC picked it up. Suddenly my mobile phone was ringing all the time – the BBC Look North team wanted to speak with us, then the local radio stations and then Sky News! I couldn’t believe that all these people wanted to hear about what happened.

The journey I’ve been on

I think I have gone through every emotion possible since Joe was diagnosed at nine months old. I felt denial, anger and guilt. I didn’t want to face the fact that he was disabled.

But then when Joe was three, he started attending the nursery attached to a special school.

One day we were called to a meeting. We were put in a room, but Joe wasn’t there. Then the teacher came in and said, “Joe wanted to show you something”.

Then in came my little boy, wheeling himself along for the first time ever. I had always carried him before. Gosh, he was so proud, so pleased with himself!

I just started crying. The physiotherapist put her arms round me and said: “He needs to be in a chair. He needs to know that this is what he needs, and you have to help him.”

That day, for the first time ever, I used the word ‘disabled’. I saw that my boy would always have to face things I would never fully understand. But as his mother, I was going to make sure that he had access to everything that my other children had.

That’s the reason I decided to stand up and fight about the cinema. I felt I had to give my son a voice, and show him it’s okay to say: ‘I want what everyone else has, please’.

I want him to know that there’s nothing in this world you cannot do – you might just have to do it a bit differently.

Kelly and Joe at Paralympic stadium with the flame in the background
Visiting the Paralympics in 2012

Tackling the issue head-on

As a result of all this, I’m now in the process of setting up a website about accessibility in my area. It’s a review site for days out and attractions, and at the moment we’re concentrating on Leeds, Harrogate and York.

There’s nothing worse than getting in the car for a day out and then having issues with access, so we collect details about disabled access. It will also have a page of all the disabled-friendly clubs in the area.

Families also leave us reviews of places they have visited, so that people know how accessible it really is. Let’s face it – just because it has a ramp at the front door doesn’t mean it’s wheelchair-friendly!

We finally saw The Theory of Everything, and as we left the cinema Joe said:  “I can do whatever I want mum – look at Professor Hawking.” I was so proud.

Kelly shared her story as part of our 100 Days, 100 Stories project. If you’re a disabled person or a parent of a disabled child, email us at stories@scope.org.uk to share your story.

The financial strain of disability #100days100stories

39 year old Emily lives in Eastbourne with her husband and four children – Lucy, 16, William, 12, Oscar, six, and Reuben, who’s four. Both the younger boys have autism, and Emily has had Myalgic Encephalopathy (ME) for many years, which means her energy and movement have been limited. She is recovering now, and has recently returned to work, but she still uses a wheelchair for long distances. In this guest post as part of our 100 days, 100 stories campaign, Emily describes how her family is trying to meet the extra costs of disability.

Food

The boys have a lot of difficulties with food and there’s lots of wastage. If they get some bread or cake or a banana, they will eat part of a slice, throw it on the floor, get another, and throw that on the floor. They’re also very faddy – one day they want eggs on toast and the next day it’s oranges. Sometimes they won’t eat at all; another day one will eat dinner, but the other won’t.

Clothes

The boys often need particular materials and certain fabrics are a no-no, so we’ve wasted money on things they won’t wear at all. Oscar insists on wearing one sock at night; the other sock gets separated so I end up with a sock nightmare! Reuben loves playing outside in the garden, but will get very muddy, jumping in puddles and sitting down on wet surfaces that other children would probably stay away from at his age.

Washing

We get through a lot of washing powder with extra continence problems. Ozzy is only just out of nappies at six; Reuben still wears them 24 hours a day and he’s four. He has nappy leakages at night, and spills a lot of milk on the bed, so that’s extra washing. The other day Oscar put his hand down his pants and smeared poo in his bed. When Ozzy was in nappies, we would dress him in five layers of clothes to stop him smearing everywhere, but now that he’s potty trained he needs to go to the toilet himself at nights, so he goes to bed in pants and pajamas. It’s a difficult decision between teaching him independence and keeping things clean.

Learning

I’ve tried to get the boys interested in reading since they were babies, but it’s been a struggle. Ozzy’s just started showing an interest, but Reuben’s just not interested because of his speech and language delay – so books end up getting ripped up, partly in frustration and partly from excitement I think.

I have to think outside the box and use online games and reading apps. Both the boys are fixated with screens, so we try to use them productively. If we could afford an iPad with the right apps it could really help Reuben learn to communicate.

Toys and play

Emily's husband and four children on a park bench eating icecream
Emily’s husband and four children

They’re very destructive in their play and exploration, and get through toys like no one’s business. Reuben goes to his bedroom, pulls all the drawers out and empties all his toys on the floor. I think perhaps all toddlers are destructive, but the boys have been in this stage for five years. They also play with everyday items around the house – things from my desk, the kitchen, the bedroom and the bathroom. This isn’t only an extra expense on replacing the items, but also wear and tear on the house.

Supplements

It’s only because I’ve worked hard at trying out different combinations of supplements and pacing my rests throughout the day that I’ve managed to get to a place where I can return to work. I take D-Ribose energy supplement, which boosts energy and recovery. That’s the most expensive, at £18 per 250 ml. Without it, I wouldn’t be able to get out of bed. Then there’s Aloe Vera juice, vitamin D, evening primrose oil, among others. I easily spend £50 a month on the lot, possibly more. They all really make a difference.

Toiletries

I’m really sensitive to chemicals and had to change shampoos and bath stuff to dermatological and natural ingredient products, but it’s very expensive to trial and error those. The boys also get psoriasis and eczema so they need to have special toiletries. The consultant recommended having lavender oil in their bath to try and calm them at night, so I managed to source a big 100ml bottle for the same price as a 10ml. But all this takes time and research, and you’re not always successful finding a good deal.

Travel

To go shopping I hire a mobility scooter, which costs about £100 over the year. We’ve had to replace car seats because Reuben’s an ‘escapeologist’ who manages to get out of most five point harness car seats, and we’ve had to replace buggies over the years. Car parking can be expensive, especially in hospitals. When you’re transporting two autistic boys, public transport is not a valid choice because of the safety issues with the boys running off in a random direction.

Looking to the future

We use the boys’ DLA (disabled living allowance) to help with their care, so we have an extra pair of hands on the school run to keep them safe, and to help us keep on top of the washing, extra tidying and cleaning.

I’m happy to be back working, but the financial state we’d gotten into by me not being able to work was getting really bad, and we were getting heavily into debt. We sold our flat to pay off our debts, and moved into rented accommodation.

If I hadn’t recovered enough in order to be able to get a job, we’d be really struggling still. With both of us working, we can now cover all the high costs of living, and the extra expenses that come with our beautiful boys. We can’t take them to therapeutic groups or swimming in the evenings, as I don’t get home in time; but just like everyone else, we’re doing the best we can with what we’ve got.

Life costs more if you’re disabled. Read more #ExtraCosts stories

We were offered a termination. No one ever said: “He’ll bring you joy every day” – #100days100stories

Guest post by Alexandra from Dunbar. Alex’s second child, one-year-old Benjamin, has very complex needs which were discovered before he was born. She writes a blog, and shares her story with us as part of Scope’s 100 Days, 100 Stories project.

We were 38 weeks into an uneventful pregnancy, excited about the prospect of meeting our second child.

Alex's son Benjamin at two days old
Benjamin at two days old

Then, at the end of a very long Friday, starting with a routine ultrasound at nine in the morning and ending with a hushed consultation eight hours later, we were informed that our baby’s brain had not developed beyond that of a 20-week foetus. It was way too small and simple. There were big holes in the middle and smooth surfaces where there should be intricate folds.

He may not breathe on his own, they said. He would probably need to be fed through a tube, would almost certainly suffer frequent and severe seizures, and would be very unlikely ever to walk or talk.

Benjamin in blue jumperWhile we weren’t pushed towards terminating the pregnancy, if we wanted to, the papers could be signed there and then.

We went home to think it over. We returned to the consultant again and again, we spoke to friends, relatives, counsellors, we scoured the internet.

A weekend turned into a week as we considered the implications for our baby – his likely suffering, his quality of life – for ourselves, and for our 21-month old daughter, Jackie.

I know it was the doctors’ responsibility to prepare us for the worst. But no one, no one, said: “There’s a chance he might be happy. There’s a chance you might still be able to do the things you wanted, just with a little more planning. There’s a chance he might enrich your lives in ways you never imagined.”

Our adorable son, Benjamin, is now one year old, and he has changed our lives for the better in so many ways.

Benjamin and his sister Jackie in Santa hats
Benjamin’s first Christmas with his sister Jackie

We haven’t yet missed out on anything we’d planned – we’ve been on trains, buses and family bike rides, bought a big old house on the coast, been abroad on holiday. My husband and I are closer than ever. I have learned that life is not so much about principles – it’s about caring.

We met some amazing people – mothers, fathers, grandparents, carers– fighting for their children, fighting to make their world a better place, sharing everything they have.

Benjy’s big sister loves him to bits, comforts him when he cries, plays with him whether he wants to or not! He’s the first thing she asks for when she wakes up in the morning.

Benjamin with his mum Alex
Benjamin today

Our son is a contented, even joyful, little boy and aside from his disabilities, he is healthy.

Yes, there are tough days. No one caring for any two children could truthfully say otherwise. Yes, we worry about the future – his and all of ours. Yes, it is early days yet – things may, and probably will, get harder.

But I firmly believe that Benjamin will continue to brighten our lives every day. He proves that there is another realm of possibility outside the grim, medical, worst case scenario.

Find out more about the 100 Days, 100 Stories project, and read the rest of the stories so far.