My Ten Year Old Son Doesn’t Know What Christmas Even Is

As his twin sister races downstairs eager to open another door on her advent calendar, excitedly counting down the days to Christmas Day, you watch TV flapping like any other day.

As your twin sister practices Christmas songs after school in preparations for her Christmas show in two weeks time you watch the same ten seconds of lifts on you tube and rock in your seat as you always do.

Christmas means nothing to you.

No letters to Santa, and definitely no visits to any grottos.

No decorating a tree with the family or even any concept of what tinsel is.

No singing Christmas carols or dancing to seasonal pop songs as they play in the shops.

It all means nothing to you.

Your world is oblivious to the hype, the busyness, the traditions that consume society at this time of year.

You would eat turkey and all the trimmings if it’s put in front of you, but you would equally eat any other meal presented too. It’s just food to you, nothing more, nothing less.

My autistic ten year old has no understanding or interest in Christmas. He is still consumed by his own world, dependent entirely on routine, not communicating verbally at all.

Honestly, some days that breaks my heart. I know we should not compare children as each child is unique and individual but at Christmas you want your child to be excited, happy, expectant. Instead my son is uninterested, unconcerned and unaware.

Christmas isn’t his ‘thing’. Neither is Easter, his birthday, the tooth fairy or any other number of occasions you can think of. None of it enters his world.

He won’t write any Christmas cards (he can’t write any letters let alone his name) and he likely won’t receive any either, family events and get togethers are too much for him so I stay home with him. The only Christmas event he will come to is the church service but even then he gets very upset because it’s different to how he perceives church to be. He doesn’t know Christmas carols and he wants the usual songs he is used to back.

He doesn’t like the changes.

He doesn’t like new stuff.

He doesn’t like Christmas.

I can’t change that. It’s who he is and how he is. I could cry my eyes out every day for years but it won’t change things. I’ve had a decade of crying and wishing things were different. I have accepted that Christmas just isn’t something my ten year old understands nor does he wish to partake in it.

Even if I bought him presents he would never open them. He’s never opened a birthday or Christmas present in his life.

I could pretend it’s all ok. I could move a tree near where he is and take a picture and pretend he’s part of it all. I could put seasonal clothes on him and imagine he chose them. I could buy and wrap stuff for him and dream that somehow the magic of Christmas would change him overnight. All that would do is break my heart more.

I don’t need that. He doesn’t need that.

So while I decorate my daughters bedroom with her and revel in her excitement, while I buy and wrap gifts for her eagerly looking forward to seeing her face on Christmas morning, while we sing and laugh together as we practice Christmas songs the other side to my life is that I am playing down everything as much as possible to keep my son at ease.

I walk a fine line of trying to celebrate and embrace Christmas with one twin whilst ignoring it’s very existence with the other.

My son has severe learning difficulties, severe autism and epilepsy. He can’t speak. He can’t care for himself.

He is full of life, full of fun and the love of my life.

But at ten years old he still doesn’t know what Christmas even is…and he most likely never will.

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My Severely Autistic Son DOES Have A Bright Future

Six and a half years ago when I took my toddler to a clinic and left with a diagnosis of severe non verbal autism , pica and global developmental delay my heart broke. It didn’t end there either. Six months later he was diagnosed with a progressive genetic condition. A year later he added vision impairment to his list. At seven he added an optic glioma, a form of brain tumour and at nine, epilepsy.

As I write this he is ten, with the developmental age of a one year old, the speech of a nine month old baby (he is non verbal), he isn’t yet potty trained and requires round the clock care. He has to be medicated twice daily to keep major seizures at bay. He needs six monthly MRI tests to monitor his brain tumours.

On paper his future doesn’t look good.

I have spent so much time breaking my heart for my son and all he will miss in life. He likely won’t fall in love, get married, have a family, have a job, learn to drive, attend college or university or live independently; all the things parents expect from their children as they grow. He can’t yet write his name, he’s never attended mainstream education and his care needs are so high I have been his full time carer since he was born.

So given all that information how can I possibly say my son has a bright future?

Quite simply this: Quality of life isn’t determined by what other people think.

I thought my child should find a partner, perhaps have a family of his own, get a job, drive, contribute to society in some way and make a difference. I thought he should go to school, perhaps onto college or university then find happiness and fulfilment in a career of his choice.

But who says any of this is a bright future? Who determines these things as quality of life?

In actual fact my son has an amazing future ahead of him, one very different to how I imagined, but even more incredible!

He’s never going to carry the burden of responsibility so he won’t stress about interest rates, taxes, mortgages or company shares.

He’s never going to become embroiled in complex relationships so won’t experience the heartache of divorce or family breakups.

He will remain blissfully sheltered from many of the awful things that life carries with it like murder, abuse, political turmoil, homelessness, drugs or wars.

His simple life will be the envy of many.

His needs will be met, either by carers or myself, for as long as I live. He has a sister who adores him and who I know will do all she can to make sure he is looked after too.

He will spend his future not in the drudgery and stress of daily commutes to work or long shifts but in doing what he loves most. He’ll be taken swimming, the cinema, cafes, shops, garden centres and day trips. It will be like he’s retired without ever having to have done the fifty plus years employment first.

Clothes and food will be provided for him. Other people will arrange whatever finances are required, drive him or support him in transport and make sure he is happy and well.

His future is, in fact, what so many of us would dream of. He will watch what he wants on TV, explore the world via google street map and see family often.

He will, as he already does, be surrounded by love, respect and support.

I’ll take him to as many lifts as he wants because his years of education will be complete.

I am not deluded. I am not just looking at life from rose tinted glasses. I am fully aware that my son will always need a huge level of care and that I may not always be around to give him that. I, more than anyone, understand how vulnerable and naive he is and always will be. I know i will fight budget cuts, endless complex forms to have control of his finances and health needs and that I will likely get little to no respite when he passes from children’s care teams to adult care teams.

This won’t be easy for ME but for HIM the future is bright.

We are so quick as a society to assume that anyone with learning disabilities, severe autism or complex needs is a burden. We see their quality of life as somehow less because it doesn’t follow the tradition path of higher education, work and raising the next generation. We see their inability to pay taxes as somehow awful and view them as beneath others.

My son, and thousands of others, walk a different path in life. They face a future quite different to that which we see as ‘normal’. Yet their future, their existence, their needs, are not in any way less or second class.

My severely autistic son’s future is full of life, love and fulfilment. That to me is the epitome of a bright future and quality of life.

I am looking forward to it and if he understood what the future was I know he would be excited too.

A Nine Year Old’s Letter To Her Disabled Brother

Dear Isaac,

I know you can’t ever read this but maybe one day I will read it to you. Maybe one day you will understand.

Tonight when you moaned and screamed when I was trying to watch a video you made me grumpy. I still love you even when I got mad at you and I am secretly glad you are well enough to scream and moan now.

The last two days I have watched you have lots of seizures and I have been so worried about you. I worry you might go to hospital or you might faint. When you have lots of seizures I don’t like going to school or leaving you. I call your name to try and wake you up. I prefer you wide awake and acting normal. I miss your screaming and being noisy when you have seizures. It’s like you are there but not there. You scare me but I still love you. I pray God will stop your seizures soon because I want you better.

One time I counted you had at least 7 naps in one day. I played card games with mum and dad and still you didn’t wake up. That made me sad. I missed you that day so much.

When you have a bath I really want to play with you and have fun but just as I start to have fun with you you push me away and makes me cry. Why do you do that? I wish you could talk to me and tell me. I would understand. I love you.

I love going on trains with you and going to the park. You are always happy in those places. I know you love me pushing the roundabout for you. I like seeing you on the swing too because I got you that swing for you, though I know you will never understand that. I did it because I don’t think life is fair to you and its better when you are happy. When you are happy I am happy too.

You keep me awake with his noises at night and wake me up early. I forgive you. Always.

You kill my fish by feeding them. Feeding fish is good Isaac but maybe not with talcum powder, toothpaste, trains and bubble bath! You do lots of naughty things like use felt pens on the armchairs, tipping bins, pulling pictures off walls, wandering away, and you always have to be first in the house. You make mummy and daddy sad but I want to tell you it’s ok. We all forgive you. We all love you. Sometimes we might be mad but we always forgive. We know you don’t mean it, though I have some baby fish now so it would be good if you just let ME feed them. Would that be ok?

Sometimes you get more attention. Mum is always bathing you because you scream and throw things if she doesn’t. You always want to go out even if I don’t want to and it sometimes feels like you always get your own way. It’s not really fair but I still love you.

You can scream very loudly. You hit me all the time. Please can you be gentle? Until them I will be patient while you learn.

There are things you can’t do. You can’t talk or write or read. I know you can’t read this but maybe you will understand if I read it to you. Maybe.

You can play just in a bit of an awkward way like tipping things on the floor or eating teddies. You only sometimes cuddle me but that’s ok.

You can be funny though. You try to push the roundabout AND get in it at the same time! You throw your fork away when you have finished eating because you forget we can wash them. You put your fork in-between your toes and then pick up food with your fingers. That’s clever and funny. You put your iPad behind your bed and think it will magically charge there. You chew charging leads and then wonder why they don’t work anymore. You make me smile and I really love you.

You never walk to school because it’s 14 miles away. You get star of the week more than me because there are less children in your class. That’s unfair! You get it for silly things too. But you never have show and tell. That would be funny because you can’t tell anything anyway. That must be hard because I know you want to say so much.

You are always on google maps. I think that’s amazing and clever. Some people don’t think you are smart but you are.

You never get to be secret student like me. My school is doing secret student now and I was secret student today in my class. When I was chosen I thought of you. Would you know what that is? The more I get bigger the more I wonder about things that you might never do or understand. You know what though, I think they chose me deliberately because I was having a bad day. I went to school crying today because you had some of those seizure things again and I want to make sure you are ok. I can’t be a good sister if I am at school can I? I’m sorry I left you.

My friends don’t understand what it’s like having a brother like you.

Sometimes I don’t want them to even know about you. I worry they would say nasty things about you because you are different or say nasty things about me. My best friend knows about you though. She worries that you may hit me but I don’t like her questioning things about you. It’s hard to explain about you because you are just, well, you are just very special and sometimes precious things are best kept secret. Is that ok?

Sometimes I love you Isaac. Sometimes I hate you. It’s hard having a brother like you but it’s also easy having a brother like you. It’s hard to live with you but its easy to love you. Really easy.

You are my friend sometimes and a bully other times. I wish we could be friends more. I am going to try and help you do that.

You teach me how to be patient and that it’s ok to be different.

I want to be there for you when you are bigger. I want mummy to teach me to care for you. Please let me do that will you?

Please try and keep learning. I believe in you. I will teach you. I can do dividing with remainders now and everything! But what I am most happy about doing is making you smile.

You are the best brother in the world even when you make me cry. I know I make you cry too.

You help me. I help you. How does that sound?

If you can’t say yes just sign it please.

It’s ok because I understand.

With love,

your sister Naomi

Why I Struggle When My Special Needs Child Gets ‘Star of the Week’

So my 9 year old son came home from school on Friday with a certificate and photograph in his bag. There was no eagerness to show me and no message in his school diary; it was just there. Of course I am proud of him and told him so and absolutely it will be displayed on his bedroom wall to honour his achievements like his sisters are in her room. That is never in doubt. However, I have to be honest and say I really struggle when my son gets ‘star of the week’ and here is why:

1. It reminds me just how far behind he is academically.

It’s a sobering thought that my son has been at school five and a half years and is still working at pre-school levels in many subjects. The very fact he still has no idea that star of the week is any sort of aspirational incentive to even aim for says it all. He isn’t being modest or shy in not showing me his certificate; he honestly still doesn’t get the whole social aspect of celebrating achievement in any way. His twin sister commented on his award saying ‘well done Isaac but…’ and she went on to ask why he is still so far behind her. That’s hard. You see I live with my child daily and I know he struggles but seeing it on paper seems to somehow make it raw. It hurts. I am proud of my son but sad that he is behind so much. I don’t think anyone wants their child to be 7 or so years behind their peers in any way.

2. It makes me scared for the future.

I try not to think of the future. I live everyday and enjoy the moment but wisdom would tell me that I do need to plan for the future too. I shared my sons achievement on social media and today someone asked me in person what happens to children like my son when they finish education. The reality is my son will likely not be suitable for college and academically will never reach the level required for university. Employment is pretty unlikely too so our current options include him living at home and attending day care services. That’s not what I planned for my child when I conceived him and carried him for nine months, and although I do need to be mentally prepared for this seeing his star of the week award just feels like his future is all planned out and that is scary. His options are limited and seeing his academic ability on a laminated sheet makes that a stark reality. I won’t lie, that is hard to accept.

3. It makes me feel he is being defined by his ability to learn.

When I think of my child I think of am energetic, fun loving, teddy chewing, mischievous little brown eyed boy who does the best squeezy hugs and who loves his food. I think of the child who has incredible gifts in communication despite having no spoken language. I get so much joy from singing along to the songs he plays on his iPad and going to lifts with him. I see a child who gets so excited every time Bing Bunny comes on the TV that he bounces in the armchair he is sitting in. I see a child who could go hundreds of miles to places on google street map even though he has significant visual impairment. I don’t see his lack of ability to read or write or speak as an issue and none of those difficulties define him. So when I see his star of the week award I hope that this is not just how society sees my child either.

My son will always struggle with some things. Professionals and medical specialists have told me it is unlikely my son will ever speak to me. Education have told me he won’t ever attend a mainstream school and college or further education is unlikely. It’s a very sobering thought but with that comes my absolute determination that my son should never ever be defined by his struggles.

So I will stick his award on his bedroom wall and smile. It’s great he has been recognised. It’s great he is making progress but I never forget that for everyone of us life is much more than our ability to learn or how far we go in education.

I struggle when my son gets star of the week because his ability to achieve should never be limited to traditional education. I am raising a remarkable, brave and wonderful child who is breaking the mould in life. He is a star in so many more ways than just trying to write the digit 2. One of the many reasons I write about him is to help others see beyond his academically ability (or lack of) so I will stick that award up and get back to celebrating my son in every other way I do daily.

Don’t ever let educational achievement define anyone. We are much more than our ability to learn.

A Mother’s Cry: Can my Disabled Child Ever Become a Christian?

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It’s Easter Sunday, the very centre of my beliefs as a Christian, that my Lord and Saviour not only died for me on a cross to carry my sin, but he rose again on the third day to beat death once and for all to enable me (and everyone else who believes) to have eternal life.

I sat in church today and heard the gospel message preached with my beautiful children beside me, just the same as my parents did the generation before. I never tire of hearing the message of Jesus crucified and at 15 it impacted me personally on such a level my life has been rooted and grounded in my faith ever since.

Yet here I am faced with a massive question that has caused me to question my faith in a way I never ever expected: if he wanted to, could my disabled son ever become a Christian?

Why would I ask this? Well every tract I have ever read (there have been hundreds), every gospel message I have heard preached (there have been many) and every evangelist I have listened to have all taught a way to salvation that is fundamentally impossible for my child to ever achieve.

img_1145-1This is Isaac. He is, like everyone of us, made in the image of God. He is the most beautiful and incredible gift ever given to me. He is a true miracle having been prayed for and believed for against all odds. I was given medically less than 1% chance of ever having children yet after ten years of infertility God blessed me with not one, but two, babies. Isaac was the first born of twins. He has soft dark brown hair, hazel eyes that shine light and sparkle with life even if one of them doesn’t work and the other hides a tumour on its optic nerve. He makes noises, though at 9 and a half none of these noises form words that you and I can distinguish. He has severe autism. He has severe learning difficulties. He is epileptic. He has a brain tumour that means he will forever function as a very young child, most likely no more than aged 2 to 3 years.

So when I hear today’s gospel message once again I am crying, not only because the story of my Saviour always touches the very core of my being but because I know how the service will end and I can’t help wondering…

Can my disabled child ever be saved?

You see the way of salvation in the Bible is clear. It is based on such well known and readily quoted verses of so many believers: Romans chapter 10 and verse 9; “That if you confess with your mouth that ‘Jesus is Lord’, and believe in your heart that God raised him from the dead, you will be saved.”

I believe that.

But what if someone has such significant learning difficulties they will never understand and they can not speak their own name let alone say ‘Jesus is Lord’. What happens then?

Then there’s the famous one in John chapter 3 and verse 16: “For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish but have eternal life.”

I believe that too.

But what about those who are cognitively unable to believe?

I could go on and talk about sin, baptism, the work of the cross, bridging the gap between God and man and all sorts of things that preachers and tracts talk about. Not one of these things will ever be understood by my son.

If he can’t understand the story can he ever believe in God?

He is never going to raise his hand at an alter call. He will never go forward for prayer to turn his life around, he will never hold a microphone and testify to how he was once an addict and now he is a Christian.

The fact of life is, for my son, and so many others, we need to see salvation in a different way.

Maybe I am tearing up the theology books here, maybe I am shaking traditions, but I believe my baby boy will always be saved. He will never be the lost sheep that the Shepherd longed to find. He will never be the prodigal son. He will never sin. The acts of the sinful nature (according to Galatians chapter 5 verses 19-20) are sexual immorality, impurity and debauchery, idolatry and witchcraft, hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions, envy, drunkenness, orgies and the like…one thing I can category say is that my son will never do these.

He embodies innocence. As Psalm 139 says he is fearfully and wonderfully made. Like us all he was made in the image of God. But unlike us, he can not choose to sin, neither can he choose to believe.

He can flap as we sing praises, he can make a joyful noise, he can rest in the presence of God. He can feel peace, experience joy and love deeply. I believe he can know God in his Spirit even if his mind and body don’t function as well as we would all like.

I believe he is in the palm of Gods hand.

I believe in grace that a loving God has searched my son and knows his heart, that he is familiar with all his ways. He alone created his inmost being.

God has this covered.

Can my son ever get saved when he can’t believe and confess like every preacher and tract says he has to?

I can’t quote you scripture but my mother’s heart cries out to a God who hears my prayers and is carrying my son both now and forever.

That’s my mother’s cry.

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How an Accident Broke my Autistic Son’s Trust

My son has autism. He also has learning difficulties and no speech. I am not going to lie; everyday is a struggle. He is 9 now and slowly we have learnt strategies that help both him and the rest of the family cope.

We have learnt to use visuals to aid his understanding.

We have strict routines for school mornings and bedtime.

We use ‘first/then’ so he knows that one thing follows another.

We use social stories.

We give him plenty of time to process what is happening and what we are doing.

We let him chose between no more than two things because anything more confuses and stresses him.

We get by day to day. We have screaming and frustrations but by and large we stumble through.

But what happens when an emergency or a crisis happens and you have no time to do any of the above?

Two weeks ago I was driving my car on a very fast road with my son with me. I have been driving for over twenty years and never been involved in an accident. I explain to my son hat was going to happen using words and visuals. I was picking up a family member then we would get his sister from gran’s house and then go home. He screamed at the thought of transitioning from his comfy seat at home with YouTube on his iPad to having to sit in the car. I was patient and gave him time to process. I strapped him in and made sure he was comfortable and then I set off.

It was all going exactly like I had explained to my son in his social story. It was such a simple story with a photo of mums car, a photo of my brother’s house, my mums house, his sister then home. That was how it was all meant to happen.

Except it didn’t.

On the journey home we were unfortunately involved in a major car accident. That wasn’t in the ‘first and then’ or the social story and there was certainly no visual of my smashed up car and inflated air bags!

This is when non verbal autism is serious. In an emergency situation how do you help a child with severe autism and limited understanding cope?

How do I explain he can’t get out of the car when cars are speeding past us at 70 miles per hour? How do I know if he is injured from the crash or even in shock? He just sat there in total silence.

When the paramedic first arrived he asked my 9 year old his name. My son never answered. He asked him his age. Silence. My 9 year old has less language than an average 1 year old and all of a sudden the reality of that crushed my heart. The paramedic then asked me if I had an idea if my son was injured. He can’t even point to parts of his body in the nursery song ‘head shoulders knees and toes’ so how on earth can he say if he is in pain or where?

All three lanes of high speed traffic were halted while my car was pushed over to the hard shoulder for safety. To my son this was wonderful! He thought the car was moving again and I should get in and drive him home. That’s what was in his social story after all!

If I thought getting my son out of the house and into the car an hour earlier had been hard I had no idea! Now I had to get my son out of my smashed up car and into the back of an ambulance. He has no concept of what an ambulance is. He was not for getting out of my car.

Autism is hard. In an emergency autism can be impossible!

I could not suddenly show him visuals. I had no pre-prepared picture story. I could not give him adequate time to process! His life was in danger and sadly I had no choice but to pull him out that car and drag him into that ambulance. I wish he could understand why I had to do that but I don’t think he ever will.

My son is ok. The next day a lot of bruising appeared but thankfully it was all superficial from his seat belt. The real damage though is to his trust and no-one can give me any idea when that will heal, if ever.

While my injuries will heal over time (ligament damage and bruised bones) I can at least understand what happened.

My son with autism has no concept of ‘emergency’ or even ‘different’.

He won’t entertain any social stories now. He just screams when we say ‘first and then’ and he throws away all the visuals we have.

He can not process the fact that an emergency happened and things had to change.

A friend said about the accident ‘thank goodness nothing was broken except the car’.

Sadly the crash broke much more than a vehicle.

An emergency situation broke my son’s ability to trust me and there is no insurance that will cover that.

Who sees the hidden young carers?


As her brother climbed awkwardly into the swing she held it still for him as best she could before gripping the chain and gently pushing it forwards and backwards to keep him happy. For all her brother screams and attacks her and makes her life challenging she never stops wanting to help him and support him. She pushed that swing with all her might (he is 21 pounds heavier than she is) until he tired of it and wanted off.

 
The only one who noticed was me.

 
This is just one example of young children who are living their lives as young carers hidden from the eyes of so many around them.

 
Who sees the hidden young carers like my daughter?

Just days before her brother was having a difficult night. He has complex medical and developmental needs and is unable to communicate using speech. He was distressed and agitated and it was taking both myself and my husband to keep him safe and calm. He had just had a difficult meltdown where things had been thrown and broken and as he gradually calmed we were sorting out the mess and chaos surrounding him. As one of us cleaned up broken glass the other went to check on food that had been quickly left cooking downstairs. On my return I could not find my son in his room and neither could I find my daughter. I stood for a minute when I heard a noise I had not heard for days: children laughing!

His sister had decided to run her brother a bath to cheer him up. She had made sure the water was the right temperature and put in his favourite toys and here she was sitting on the toilet beside him checking he was safe like she was suddenly ten years older than her true years.
The only one who knew she had done that was me.

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Who sees the hidden young carers like my 8 year old daughter?

 
Another night recently my husband had popped out for a bit. My son had been bathed and both children were in their nightclothes when my son suddenly began throwing himself down the stairs screaming hysterically. I ran to him and held him tight as I tried to settle and calm him. His anxiety was at crazy levels and he was inconsolable. He was making so much noise I never heard the front door open and I never saw my 8 year old leave the house in just her pyjamas. The first I knew was when my son pulled me to the stair window and my heart missed a beat seeing my daughter the other side of our street closing someone’s front door. The second that door was closed her brother resumed his flapping and clapping like the world was suddenly back to being right again. When I spoke to my daughter later explaining how leaving the house is dangerous she replied ‘My brother needed me. I was only trying to help him.’ (As a side note I live in a very quiet side street and I am fully aware the door should have been locked. Hindsight is a great thing!) 

I was so glad no-one else saw her and I know she won’t do that again. But it still leaves the question who sees the hidden young carers like her?

 
There are young carers groups out there. They do a wonderful job for many young carers. Yet there remains so many young carers like my daughter who are ‘hidden’ due to a number of reasons.

 
My daughter is not recognised as a young carer because we are a two parent family and it is deemed her level of care for her brother is not ‘substantial’ or regular enough.

She is not recognised as a carer because she herself has some needs and it is deemed that due to these needs she is not able to care for her brother.

Until recently she was not considered to be old enough to be a young carer.

It was felt by professionals that we should not allow her to take on the caring role that she herself has readily and willingly taken on.

 
These are just a few reasons why young carers can be ‘hidden’.

 
Statistics say there are around 700,000 young carers in the U.K. That’s the ones who qualify as young carers but what about all the other precious children who are doing more than they should for a disabled or ill family member and no-one sees or knows?

 
I see my daughter so at least I can be there to support her and thank her even if others don’t.

 
There are 13.3 million disabled people in the UK. I wonder how many of them are being cared for today by a hidden young carer?

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