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

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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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The Life Of An Autism Sibling


In the back hall of a church she watched as her brother climbed a toddler slide. As he sat at the top of the slide flapping he lost his balance and fell off. He was shocked and shaken as he laid there confused and hurt.

While the adults checked him over his sister ran around the room looking for all his favourite teddies, then sat beside him stroking his hair and whispered: You are ok. Don’t be sad. You are ok.
She is smaller than her brother, weaker than him physically, and much more timid in nature.
Yet she is strong. 

She is the sister of a child with autism and that is something very special. 
She copes with screaming and has learnt to be a peace keeper.

She copes with a brother who is controlling and she has learnt to compromise.

She copes with a sibling who rarely sleeps and she has learnt to rest as and when she can.

She copes with the unfairness when her sibling does not understand rules and she has learnt patience and maturity beyond her years.

She copes with aggression and responds with peace.

She copes with his iPad on full volume and responds by showing him how to plug in earphones.

She copes with people staring at him and she smiles at them and puts her arm around her brother in support.


She copes with getting less attention than she deserves and has learnt to play herself to cope.

She instinctively knows and understands now when he is experiencing sensory overload and leads him to a quieter place.

She opens snacks for him because she knows he does not have the co-ordination to do it himself.

She has learnt that he can not join in her games and copes with that disappointment better than many adults would.

She fights her brothers corner.
She keeps him safe.

She changes the TV channel when he screams at a show he does not like.

She even makes hand dryers work for him because she knows how much he likes them.

The life of an autism sibling is not easy. They are often over looked and expected to cope. They miss out on so much because of the needs of their sibling and have to adjust to family life dominated by an invisible condition. A lot is expected of them beyond what other kids deal with.

It takes strength to cope when your brother screams daily. It takes strength to understand certain toys can not be bought because they pose a danger to your sibling. It takes strength and maturity to realise and accept that having friends around to play may be more difficult than it is for others.

To watch your brother or sister struggle with something you do easily and not boast about this, to stand up for your sibling when others mock them, to cope with public meltdowns and not be embarrassed: you are amazing! 
Let’s hear it for the autism siblings! You all deserve the lime light for once!

The crisis of carers paid just £1.79 an hour.


I went to renew my car insurance recently only to discover my occupation is ‘unlisted’. I was forced to telephone them and ask what I should list myself as. They decided I was either ‘unemployed’ or ‘stay at home parent’. I am neither of these! I am a full time carer but no-one seems to know we even exist!

 
I gave up a managerial position to care for my disabled son. I have a degree education and had a good career in sales. I was a home owner, had a fairly new car and I was valued. Then I had a disabled child and now all I am deemed worthy of is an hourly rate of £1.79. In reality I get much much less than that!

 
I feel utterly disgusted at how unpaid carers are treated in this country. Are people aware that carers allowance is only given out to those caring for someone 35 hours a week or more and that it is a weekly amount of just £62.70? I wish I was only working 35 hours caring but assuming this was all I worked I would still only be paid a measly £1.79 an hour! Would you work for that amount?

 
Would you work permanent night shifts dealing with someone with challenging behaviour, who is completely incontinent and has night seizures, and still have to work 12 hour days as well? Would your union not have something to say about this? What about if you had no breaks and were often attacked at work? What about if you were denied any holidays or even time off for ill health? What if sick pay was non existent? What if all your employment rights were taken away from you?

 
When I became a full time carer it appears I lost all my human rights.

 

 

I have no union to protect me and no manager to put my case to. I went from being a someone to a no-one the second I became a carer.

 
I am considered nothing by society who view me as a ‘benefit scrounger’, ‘lazy’ or nothing more than ‘unemployed’. People scoff at my ‘profession’ like it is a joke.

 
Let me tell you my job is no joke!

 
I deal with life and death with a child who has severe complex needs. I make decisions on his welfare and health needs daily that should really be made by neurologists, doctors and oncologists. I co-ordinate his care without a secretary and attend meetings without back up. I sign forms as his ‘representative’ without legal support because no-one else is bothered what happens anyway.

 
If my son should die and I updated my CV employers would simply see me as having taken a ‘career break’ or ‘time out for family’ rather than viewing my current situation as a serious job. Why? Because caring has no prestige. It is seen as worthless, less than, of no value and not beneficial to any career. Even if I wished to use my experience to take up full-time employment in the care sector my current work is of no use as I have no reference or company or courses I have completed.

 
Even the NHS view me as simply the one who pushes the wheelchair or who hands his appointment card over. When my son reaches a certain age it will be expected he will attend appointments with me waiting outside despite the fact he is completely non verbal and unable to understand what is required of him. I will have to go through a host of hoops and bureaucracy to prove as his carer I even have a right to be with him, yet anyone can have an advocate or friend with them and they are fine?

 
I gave birth to a disabled child. I gave up my career to be his carer. Apparently that means my career has hit a brick wall and I have waved goodbye to my self respect and self worth. My job title no longer even appears on a drop down list and my hourly worth is now reduced to just £1.79 an hour.

 
This is the crisis of carers in Great Britain right now.

 

 

Does anyone realise this is going on? 


Raising A Child With Autism Who Has Too Much Empathy

 

 

 

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There is a commonly held belief in society that people with autism lack empathy. Every time I hear this statement I wonder if they have met my daughter.

I am raising a child diagnosed with autism who actually struggles with TOO MUCH EMPATHY.

Here is what it is like:

A few months ago I received a call from the office at my daughter’s school. Due to her autism my daughter struggles with huge anxiety and selective mutism. The school were calling to say my daughter was very upset but they could not work out why. I went down to the school expecting her to have been injured or perhaps bullied. Neither of these were true. My daughter was highly distressed in school because she had witnessed her friend fall over in the playground and cut herself. Long after her friend had had her wound cleaned up, dressed and returned to the classroom, my little girl was still crying for her friend. She later told me she felt as if her own leg had been cut and worried that her friend may have still been in pain. She took on another persons pain and tried to carry that for them. That is the deepest sort of empathy you can ever get.

Prior to this a few weeks before she had walked home from school with me very quietly and deep in thought. She looked like a child who had been in trouble at school that day and who was carrying the burden of guilt. Since she is a child who would never once consider breaking any rules I was naturally worried why she was so downcast. She spent the entire night withdrawn until at bedtime she broke down in tears in my arms. Another child had been moved down the behaviour chart to red that day and her tender heart was utterly broken for them. She truly felt every emotion you would have expected had it been herself it had happened to. She was disappointed, angry, upset and confused. She had this huge amount of stress on her shoulders that didn’t even belong to her yet she had no means of taking any of it away. Despite the crime not being her doing she was determined to punish herself for the wrong doing of another person. As admirable and self sacrificing as that is it is so unhealthy for any 8 year old to bear.

My daughter with autism takes everything to heart. She feels the pain of others like it has been done directly to herself. If someone shouts at anyone and she hears it she feels that voice piecing her fragile self worth like they were shouting directly at her. She takes on blame that is not hers. If I have her at the doctors and someone sneezes she feels responsible and begs me to make them better.

It is harder to live with a child who has too much empathy than not enough. Why? Because you can teach a child to understand the pain of others but it is so much harder to teach them to let the pain of others go when it does not belong to them. You can teach children to care but how do you teach them to stop caring when they care too much?

Having an over empathetic child on the autism spectrum means living with a perfectionist. You see she not only needs to be perfect for herself to prevent disapproval from others but she also feels she has to be perfect for everyone else too so that everyone around her is happy, safe and well.

img_0043The consequences of that are mental health issues, low self esteem and a vulnerability that worries me as a parent so much.

It is vitally important that professionals understand this in order to help my daughter and others like her. Over empathy is so misunderstood and ignored but is is real and it is very concerning.

Everyone who meets my daughter comments on her caring and loving nature. As a parent I am so proud of her and amazed at her incredible innate natural ability to reach out and empathise with others but I also worry she takes this to a level that is very unhealthy.

Could you imagine a nurse who feels the pain of every patient she treats? Or a teacher who breaks down every time a child in her class gets something wrong? Or a check out assistant who feels such empathy for every customer they want to pay for everything themselves?

My child’s future depends on professionals and myself helping her. With so much emphasis on the fact people with autism LACK empathy rather than having TOO MUCH empathy sadly I have a battle on my hands for support.

I thought raising a daughter with autism would be difficult but I had no idea how hard it would be to raise a daughter with autism who also struggles with too much empathy.

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No-one today should be caring alone

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No-one today should be caring alone

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone.

Miriam Gwynne

The effect on me…

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Having children affects everyone. You become less focussed on yourself and more focussed on another. You sleep less, go out a lot less and consider it a great achievement to get a shower without interruption. But as time passes the children slowly become more independent and confident and you little by little gain more of yourself back again.

Well that is how it works when you have typical developing children anyway. But what if that very needy, all-consuming, up through the night, needing a huge amount of time stage never ends?

It is well documented that parents of very young children are vulnerable and prone to depression, mental illness, and can easily become socially isolated. Health professionals are trained to look out for this and regularly check for signs that all is not well as research has shown that sleep deprivation and coping with the high demands of a baby or young child take a huge toll on parents.

But it is expected that season will pass as the child grows.

But for some, like myself, that season just keeps going on. And not because I went on to have another child either. It is because almost seven years after having my babies I still face the high demands, the daily intimate care needs, the lack of sleep and the stress of milestones not being met. My children have disabilities and the pressure parents of very young babies face is still very much the same as what I face daily. I still change nappies, I wash my children and dress them, I am still singing nursery rhymes and trying to teach one to say ‘mama’ or ‘dada’, I am still cutting food up and putting socks on that have been pulled off.

And that long-term intensity has to have an effect on me.image

It takes it’s toll mentally in that some days I could just sit and cry. The doctor could give me tablets but the pain and stress would still be there. Some days the effort to get dressed and get out the house just seems too much. Except unlike parents of babies who don’t have to leave the house and can go back to bed, my children have school to get to even if one of them still only functions at the level of a 1-year-old.

It takes it’s toll socially in that going out at night is impossible. Besides the fact I have huge caring responsibilities and am permanently exhausted, baby sitters are a rarity for families like mine. Who has the physical ability to carry a large six-year-old out of a bath and dry him and dress him? Who has the emotional strength to deal with a little one having a panic attack because her mum has left the house? Even if I did find that special someone I have no motivation to get dressed up and make myself presentable when my body just craves sleep.

It takes it’s toll physically. The lifting and carrying of a baby can make a mum’s arms ache but when the ‘baby’ is two thirds of your height and a quarter of your weight how do you manage? Seeing to personal needs of a toddler who decides to crawl away is a challenge. Seeing to the personal needs of a child who can bite, punch, kick and climb is an altogether harder challenge. When they are long past the age of using a baby change in public and you have to find a way to meet those needs in public toilets not build for that purpose your body aches and bends in ways you never thought possible.

It takes it’s toll financially. Babies cost. I often hear parents complaining at the cost of essential items like prams, car seats, cots and nappies. Second hand is sometimes an option though. But not when you enter the ‘special needs’ market and you have to look for elastic waisted soft trousers for a child who can not dress himself yet aged 6. Or you have to think about paying for private therapies not available on the NHS. Then there is the cost of hospital trips, the fact the schools are miles away from home and special needs sensory toys come at a huge cost. And I still have to buy wipes, and bedding and nappies and other ‘baby’ items six years on.

It just all takes it’s toll on me.

The days of people ‘popping by’ to see if I am ok has long passed. The excitement of coming to see those new babies has long gone. The phone calls from friends to hear how the babies are stopped many years ago. Yet the reality of my life never changed much.

Yes, my children have changed me for the better, but full-time caring for a disabled child takes it’s toll.

Please, if you know someone who has a child with any sort of disability, think about and do what you can to help the child. But have a think what you could do to help mum or dad too. Believe me they need support more than you may ever realise.

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