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 top ten summer stresses for special needs families


At first it is lovely to not have to cope with the school run or never ending packed lunches to make. It is a novelty to be able to put the TV on and not worry that the kids will be late or that they won’t eat breakfast. I am delighted to not have to wash and iron uniforms (who am I kidding I stopped ironing them by the end of September!) and find matching socks before 8:15am.

These are all great things to get a break from and I do not miss carrying my screaming child out to his taxi daily. But I would be lying if I said as a special needs mum that summer holidays were all wonderful. They are not. I find so many things stressful about having my disabled children with me all the time. I am not alone either. 

Here are the top ten summer stresses faced by so many special needs parents today:

1. Lack of changing facilities. 

I want to take my children to soft play, parks, swimming, museums and day trips. The problem is I have two children who still need nappies changed and both are well over the age of being able to access ‘baby change’ facilities. I need changing places toilets and these are so hard to find. For so many families this lack of toilets prevents them accessing places all year round but it is magnified during summer when children want to be out and about in lovely weather and families want to go out together making memories. None of my friends whose children have no special needs seem to even think about access to bathrooms and it upsets me that such a basic necessity for special needs families is so hard to find.

2. Lack of disabled trolleys in shops.

My son has profound autism and other complex needs. I can dream that one day he will walk around holding my hand helping me but it is a pipe dream. In reality he will smash things, scream, run away from me or wander out the store completely. I need to shop even when my children are not in school. Although online shopping is handy there are days I just need to be able to pick up bread and milk but something so simple is so difficult, and often impossible, if a store does not have a suitable disabled trolley for my son. I have lost count how many shops I have had to walk out before I bought anything because there are no basic facilities for my son. In 2017 this really should not be the case.

3. Lack of playing facilities in parks.


My local park is wonderful. It has a swing seat my son can use and a wheelchair accessible roundabout. Sadly this is NOT the norm and if my son is in his wheelchair I often find myself unable to even access parks due to cattle grids and tiny gates and that is before we even get to see if there is any equipment he is even able to use. Parks should be inclusive not just for the mainstream elite. The stress of not knowing your child can access something as simple as a swing in a play park is common for so many special needs families. 


4. Access

Yes even in 2017 there are shops, play centres, public buildings and restaurants that I still can not enter as my son is unable to climb stairs. Many shops also have displays so close together manoeuvring a wheelchair around the shop is impossible. I am denied access to places my son should be able to visit and I should be able to enter due to inadequate disabled access. The United Kingdom is far from disability friendly sadly.


5. Autism friendly hours that are not autism friendly times!

I am delighted that more and more places are putting on quiet hours and autism friendly times. However as wonderful and inclusive as this sounds they are often at times that are so difficult for my family to access. Early Sunday mornings for example are of no use to my family as we attend church and late at night is no use when I have young children who need routine. Instead it would be better to have a quiet day or autism friendly day once a week that enabled many more to access and enjoy places that otherwise exclude so many. 



6. Lack of respite.

Being nurse, therapist, attending appointments and getting very little sleep is draining. The majority of special needs families have no summer respite and little support through the long weeks of summer. This causes resentment for siblings who fall to the wayside and can put pressure on relationships and cause many carers to struggle with their mental health. For special needs families school offers necessary respite which they can not access all summer long. It makes for a very long summer indeed.

7. Inability to use household items due to sensory issues.

I dare you to use the hoover in my house over summer when the kids are home! Or the hairdryer or washing machine. These are items I use daily when my kids are at school but using them in summer causes the kids to scream and lash out in real pain. Parents of children with sensory processing disorder walk on egg shells all summer just trying to keep their house respectable without triggering continuous meltdowns.

8. Lack of sleep.

I can cope when my son does an ‘all nighter’ when he has school as I can rest or nap while he is out. When your child or children need 24 hour care and you get very little sleep that has to take its toll eventually. By week three of the holidays I have no idea of the day of the week or even my name as sleep deprivation kicks in big time. 

9. Lack of support.

Therapists vanish in the summer, as do health professionals and social workers! While I fully respect everyone needs a holiday it can be so disheartening and stressful as a parent to be left without any support all summer long. It is also detrimental to the children who require continuity and routine. Living with a non verbal frustrated 8 year old for seven weeks with no speech therapists is stressful! 

10. Isolation

Places are noisy, busy, expensive (carers allowance is a pittance!), and the general public can be ‘challenging’, making trips out of the house so difficult. Add to that the stress many families face trying to get their special needs child off of technology and even into a garden and you have some idea how stressful summer can be. For thousands of families this leads them to be isolated in their own home, forgotten and abandoned due to having a disabled child. 
With time, money and planning so many of these stressors could be overcome. A little respite, businesses and community groups installing changing places toilets and more shops purchasing firefly trolleys suitable for disabled children and life could be so much different. 

Have a think. What could you do to make summer easier for a family with a special needs child?



This article first appeared here

Five Christmas gifts to give to a special needs parent

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I used to think it was only children who were asked in December ‘what would you like for Christmas?‘. It seems as a parent I still get asked this. I tend to answer like most parents do with a simple ‘oh I have everything I need already thanks’ or the soppy mum variation of ‘my kids are all I could ever want and more.’

Both are true to an extent. My life is very full of smiles, blessings, love and joy but as a full time carer for two children with extra needs life is also very full of other things like hospital appointments, meetings, therapy and endless paperwork!

So what would be good Christmas presents for a special needs parent like me?

How about the following:

1. A listening ear.
We all have our own burdens to carry and none of us are without problems in life, yet so often we become so engrossed in our own busyness we forget to take time to listen to others. Giving me your time to just talk while you listen without judgement or trying to ‘fix’ things is one of the greatest gifts I could get all year round. Come visit me at home while we have coffee, or sit with me in the hospital waiting room. I may seem like I am coping but silently I pray for someone who cares enough to listen to my worries and my struggles. If you can’t physically be with me being at the end of a phone or even letting me let off steam via email or message is such a precious gift. You may not be able to wrap up your ears under the tree but if you could loan me them sometimes that would be amazing.

2. A shoulder to cry on.
Some days are just overwhelming. Some mornings by the time I have managed to get the children safely to school I am exhausted and emotional. Lack of sleep, worry for the future and constant battles on behalf of my children become weary. I, like so many other special needs parents, long for a safe and tender place to cry where we feel free and accepted to pour out our hearts. We need that release in order to gain strength to face another day. We need to let the stress come out in our tears knowing there is no shame in showing weakness. Could you be those shoulders? Will you let me cry without question and hand me the tissues without needing to tell me I am over reacting? That would be a gift that can not be measured this Christmas.

3. An encouraging word.
Few people truly realise how negative the world of special needs parenting can be. Forms ask for things your child is unable to do, assessments focus on your child’s shortfalls, teachers comment on how your child is not hitting targets like the others. Hospital appointments bring news that breaks your heart and even the simplest appointments like the dentist are utterly draining. Then add the guilt that your child can’t talk, or walk yet or play like other children. While other children achieve at sports, or drama or art your child excels more at loud outbursts, screaming endlessly or staying awake all night. Encouraging words are few and far between in my world so a little text, or message or a simple smile goes a long long way to helping brighten my day. An unexpected card saying ‘I care’ is like an oasis in a drought. It is beautiful, precious and priceless. You simply can’t give this gift often enough to a special needs parent.

4. Practical help.
I would never expect anyone else to have to see to my children’s personal needs nor do I expect anyone to be up all night long with them. However, there are some small very practical things though that anyone can do for a special needs parent that can make a huge difference. How about holding the door open when you see them pushing a wheelchair? Or holding the lift to save them waiting longer with a distressed child? If you see them carrying a child into a car seat in the supermarket car park why not offer to take their trolley back for them? These small gestures of kindness mean the world to someone who often feels ignored or invisible. Kindness and practical support never ever go unnoticed to a special needs parent and they restore our faith in humanity. Christmas is an ideal time to make a special effort to help the special needs parent as places are busier, louder and more chaotic than usual but remember a little help all year round would never go amiss.

5. Finally be respectful.
It is so easy at this time of year when the weather is awful and time is tight to just park in that disabled space for two minutes while you just nip in for bread. You may never ever think of doing that at any other time but for me as a parent of two disabled children this is a time when I need those spaces even more so. The same with the disabled toilet. I understand this time of year means most public toilets have queues and you don’t mean to upset anyone. However, these facilities are so precious to families like mine and our loved ones need that space and privacy to have their personal needs met by someone else. We don’t have the privilege of being able to wait. Please don’t push that disabled trolley away in your haste to get to the smaller on at the back. Having a soaking wet trolley may be annoying to you but to those of us who rely on specialist seating for our disabled children having an icy, snowy seat prohibits us from going shopping at all. Your thoughts and respect at Christmas mean a lot.

I realise now I do actually want a few things for Christmas this year. I want friendship, time, love and respect and those are not things money can buy, yet they are the most special and perfect gifts any special needs parent could want not just at Christmas but throughout the year.

Could you give me any of these? Do you know a special needs parent who could do with some Christmas magic? Let them know you care today. It could make this Christmas the best one they have ever had.

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This post first appeared here

To the child at the awards ceremony who knows their name will never be called.

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Ah, end of term.

Sports days, shows, school trips, report cards and of course the all important end of year award ceremony. Proud parents just as excited as their children, relieved teachers glad to show that someone really loved their teaching and halls full of eager little ones hoping and praying their name will be called.

You already know social media and family gatherings will be all about little Jane who had a distinction in maths, or young Brian who scored the most goals for the school football team this year…but what about all those children sitting through the ceremony year after year longing for their name to be called yet never hearing it?

What about the children who have found the school year exhausting, who have struggled to master ten new spelling words a month and who have needed support every single term? What about the child whose parents have separated this year meaning she has had huge difficulty focussing and has slipped down the ability chart as a result? What about the child for whom just getting through a single day with the noise, bright lights and confusing smells is a huge achievement? What about the child whose health issues mean that getting to school is an achievement in itself?

What about the children like mine?

Each year they become more and more disappointed. Each year their self worth and excitement gets less. They will never be top of the class, or excel at sports or get the starring role in the school play.

More and more children with special needs are being educated in mainstream schools. It has huge advantages but at this time of year of competition and recognising achievement it can be so demoralising for a child who has tried their best day in and day out and still never hears their name at the award ceremony.

I wish I could speak to every one of those children. I wish could hug everyone of their parents. I know the heartache of seeing your child feel left out. I know how hard it can be to clap and cheer every achievement announced knowing your child can never compete or be in for a chance of winning something.

Stay strong children. Stay strong parents. In cheering on others and noting their success you are developing character and if that was ever measured you would both win without a doubt.
If there were awards for perseverance, for strength, tenacity and determination YOU would be the winner. If there were awards for fighting spirit, purity and trying they would be calling out your name loudly.

One day the world will realise stars are much more that the best achievers.

Until that day, if your name is never called at that award ceremony: stay strong. Your self worth is not measured by certificates. Your importance is not measured by how many people cheer.

You are important. You are worthy and you are special. You are the best at being you and that is better than any award that any school can offer.

I’m not sure if you can hear it little one but I am cheering you on! Keep up the great work!

This piece originally appeared here

Let them play

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Let them play!

My heart is happy. My son is sitting on the living room floor with a large canvas bag and a pile of teddies. He fills the bag full of teddies, takes them out one by one and then refills the bag once again. It may seem very different to what other seven year old boys do but he is playing.

So I let him play.

Sometimes I get right down on that floor beside him and name those teddies. ‘This is Elmo’ and ‘This one is a panda’ and so on. I almost feel pressured to turn his play into a learning experience or a speech and language therapy session. When your child has significant disabilities and delays the pressure to use anything to ‘bring them on’ is overwhelming. But sometimes they just need to be children. Sometimes we need to allow them to explore and learn and enjoy being in their own world.

So let them play.

When the weather is more favourable we like to go to parks. Sometimes we walk about, or have a swing or venture down a little slide. I have to be so careful that any places are fully enclosed and have equipment that can take the weight of an older child still using frames build for younger, much lighter, children. But mostly our biggest problems is the general public who see my child licking the equipment, or flapping or running around in circles and they mock. And while he knows no different, I do. So he loves the baby swings, so what? He takes a whole lot longer than other just to climb up a few steps and manoeuvre his body down a slide. So what? He is enjoying the park, the fresh air, and learning from others.

He is playing.

I can’t let him be in the garden alone. He can’t join a football team or a drama club. He can barely balance enough to run never mind ice skate or dance. But boy does he love a good tickle! Or some rough and tumble play on the bed. He loves nursery rhymes with actions even if he can’t do any of them himself yet. He loves stories and videos and Peppa Pig. He loves sensory activities like lights and repeating sounds. He likes buttons to press, tummies to squeeze, toys that pour out and anything with water. His toy collection is all things for under three year olds. I am totally fine with that because they make him happy.

And they enable him to play.

We haven’t reached the imaginative play stage yet. Or the social play. He can’t read or write or even speak. He can’t kick a ball or throw and catch. Cars are just something he puts in his mouth to chew on. But fill a ball pull full of toy plastic food and he will sit there for ages exploring, looking and rummaging. He loves his iPad. He loves a DVD player. But most of all he loves his mummy.

So before he gets bored of those teddies I am off to play with him. It is one of the most important and most beautiful things a child can do.

However they do it…let them play!

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A moment of beauty at build-a-bear

Kids are so full of surprises! Just weeks after Christmas and the usual delude of new toys and games and what was my daughter wanting to play with? A teddy bear she has had for years! Now reincarnated with a new name and involved in all sorts of fresh imaginary play; I knew what was coming next…

Mum, I can’t find Ellie’s clothes?

Imagine my confusion! Who or what is Ellie? Followed by the panic of realising I not only have no idea where the once-buried-under-the-bed-in-a-box toy appeared from but how did she even remember it had clothes? And she seriously expects me to just pull out this last seen in 2013 teddies coat and boots? What? Goodness, this mamma can barely remember the day of the week let alone anything else! We dug in the we-have-no-idea-where-else-to-put-this-stuff box to no avail and alas I began to wonder if these ‘suddenly in demand’ items she can not live without now could have ‘accidentally’ jumped into my car boot in the pre-Christmas clear out. Oh what an awful parent I am! I shall pre-book my daughter to that counsellor she is sure to need when older!

And sometimes, for our own sanity, we make a promise we know our bank account will live to regret!

Ok, this weekend we shall take Elizabeth, Ellie, ..whoever, to the bear shop and buy her an outfit. Ok?

And breathe!

Well until today when that eager eyed baby woke and ran into my bed to announce today was the day her bear was getting new clothes! That’s it, NOTHING is ever getting thrown out again, you hear me!

So we excitedly (well reluctantly on my part!) got prepared to go. And this is when it gets complicated! As well as my way too attentive daughter I also have the honour of being mum to my son who has complex needs. How in the name of whoever am I going to get this boy of mine into build-a-bear? It’s not like you can buy a bear and get a free burger now? And the last time I checked they had no lift or hand dryer? So that’ll be a ‘no chance mum’ as per!

Flip! Could Elizabeth, Emily, sorry Ellie not become a naturist for a while until you find some other old toy? That look…well if you are a parent you know what I am referring to…it said it all!

So let’s just get this over with!

You are kidding me? Really?

My son, aged seven, who has never in his life touched a teddy, who has yet to speak, who has no idea about imaginative play…is standing over a basket of teddy ‘skins’ and has ‘chosen’ one he wants! STOP!

He is in the shop. He is not screaming. He has not wrecked the entire place.

Now THAT was worth coming!

Now how do I explain this ‘teddy’ needs stuffed by a loud, spinning machine full of white ‘stuff’? He doesn’t know what a teddy is? Or maybe he does?

Well he waited, and he ‘chose’ an outfit, unsurprisingly one that closely resembled his own beloved school uniform (he doesn’t care it was a skirt) and a red bag to match. Meanwhile I dreaded to imagine what his sister had seen! Have you seen the prices of these clothes? I pay less for my own clothes and I can assure you they are a whole lot bigger!

She settled on…the exact same uniform, a pair of pyjamas…and the added ‘accessory’ of…a wheelchair! She announced in front of the entire shop that her bear just wanted to be like her brother. And how do you argue with that?

Ok, mr build a bear, your prices are crazy, your appeal far too great, your choice better than the average high street shop for ‘real’ people, and I never want to visit for a good while until my bank account recovers…

But I have to admit, you gave me a moment of beauty today. I even hasten to say a miracle. The boy who has no teddies now has one. And he hasn’t let it go since! And you ‘normalised’ using a wheelchair for a child who sometimes struggles at how different her brother is.

So cheers! I owe you one!

P.s, a coffee shop to give me a moment to recover may not be a bad thing! I’ll leave that with you 🙂

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My heart rejoices but my eyes still cry

I can be happy for you. I know I can. I am a mum too. I understand pride in your child. I get why you want to share because I do too.
You see my heart rejoices with you when you post about your child’s achievements. I click ‘like’ or comment because all children are worthy of celebrating and because I want you to know I care.
Yet sometimes my eyes still cry.
When you post about your oldest starting university. I KNOW without a shadow of doubt what a big moment that is. I know because I made it to university and my parents were so proud of me too. My heart rejoices at how far your child has come and the immense pride this brings you. I also want your son or daughter to know that this is huge for them too. So I am right with you while you celebrate.
Yet sometimes my eyes still cry.
When you post those beautiful and funny videos of your young child singing and dancing I watch them over and over. I can’t get enough of them. The joy and excitement and beauty in your posts and pictures give me such a buzz too. Your little ones brighten my day with their smart clothes, cheeky grins, and silly faces. You make my Monday morning blues disappear with your funny stories and kids selfies.
Yet sometimes my eyes still cry.
I brood over your baby pics. I get so much joy from your wedding photos. And oh that pride and anxiety you feel at your child’s’ first day at school pics; I feel that too when I see your baby so smart and ready for a big adventure. Your holiday pics brighten the rainiest day and I admit I feel a little jealous at your beautiful body and tanned skin. You always remind me that life is for living so I look at your pics and like them. Not because I have to but because I am delighted for you. I really am.
Yet sometimes my eyes still cry.
I don’t want them to but it just happens. I am not really sad and you are not upsetting me but a part of me knows that my life is different.
But I won’t be bitter. Because that does not help me and it robs you of some of your joy and delight if you think you are making me sad.
So please don’t worry about it if you see a tear drop from my eye or I look away for a moment.
I am actually not sad.
I am dreaming.
Dreaming of the day my son may one day dance like your little one. Dreaming of the day I can post a video of him saying ‘mummy’ and making silly faces with me. Dreaming of how happy I would be to post pictures of him if he achieved like your beautiful babies do.
Right now I don’t have that. But one day in my dreams I will.
One day I will post holiday pics of us splashing in a pool together on a sunny day. One day I will post a video of him at Christmas singing jingle bells. He may be a grown up by then but I will celebrate just the same, because achievements are achievements at any age. My timescale and your timescale may be different but I rejoice with you none the less.
Keep sharing your joy. Keep sharing your pride. I need reminded that life is wonderful and joyous and not filled with hospital trips and therapies and struggles. I need to see your baby laughing because I don’t hear laughter as much as I should with my baby.
Thank you for sharing your life and your children and your stories. You bring me joy, and encouragement, and you help me dream on.
I can be happy for you. I know I can. I will not be bitter because I love you and rejoice with you. We journey in this together. Much of my journey is still a dream but that is ok.
Keep me dreaming. Keep me smiling.
Keep my heart rejoicing when my eyes still cry.

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