When Little Ears Hear More Than They Ever Should

Last summer I showed my then 9 year old how to answer my mobile phone. Her twin brother was having major seizures and she wanted to help me. I tought her to answer and when possible pass the phone to me. Despite being autistic she worked it out and did exactly what I needed her to every time.

She was proud of herself and felt like she was helping.

I was proud of her too.

In the last year she has started to answer calls on the home phone too and is doing a great job of saying who is calling and passing the phone to me when needed. It’s a huge life skill and one which she has been excelling at. Up until today though I had no issues with her answering any calls.

Today I was driving with just the two of us in the car. I was on my way to collect her friend with her for a play date. Not long before we arrived at her friend’s house my mobile phone rang and Naomi readily answered it. Unfortunately it was a call she should never have heard.

Naomi’s twin brother is sick, very sick in fact. He has a brain tumour and is about to have invasive surgery followed by treatment. While I have spoken to Naomi about this in ways she understands (she describes his tumour as slime in his brain) the phone call today was one she should never have heard. Apparently the call started by asking if it was the family of Isaac. Of course my daughter answered ‘yes’. The caller then said that Isaac was to come to hospital immediately to be admitted for an undecided period of time so that he could have some urgent tests and then surgery on his brain. I don’t in any way fault the hospital as they had no way of knowing they were talking to a ten year old but the things said in that call were not ideal for little ears.

The day before I had taken both my children to another medical appointment. This time it was a community paediatrician who had never met my children before. Both of my ten year olds had to sit though a very long conversation between myself and that paediatrician while I outlined my concerns about them both. While the conversation was necessary, once again it wasn’t suitable for little ears.

So many children with additional support needs are hearing things that little ears should never hear. They are in meetings when adults discuss concerns, missed milestones, social difficulties and medical issues about them all whilst their ears can hear. I’ve been talking to my daughter so much about this as I try and help her work through her issues but as she says even sitting in a waiting room isn’t ideal: ‘Even if I was outside waiting or in class it wouldn’t matter as I would still know I am being talked about mum.’

Children hear a lot more than we realise. They overhear phone calls, hear discussions of adults while they play and they hear when medical staff mention things. They hear above TV, YouTube and other background noises. They pick up vibes, atmospheres and worries. Sometimes they even answer calls you would prefer they hadn’t.

I’m trying to help my child process the fact her twin brother is ill but now I need to help her understand and process things she has heard that she really should be protected from.

What goes into little ears changes children. Some of those words become their inner voice, other repeat loudly like an echo for years to come and others affect their self esteem for the rest of their lives.

I’m not a huge advocate of sheltering children from life completely. I don’t think that helps prepare them for the world they will live in as adults very well. However I am a huge advocate of protecting little ears from things that they are not ready to hear yet because their minds are not fully ready.

Right now I am having to work through some difficulties with my ten year old because her little ears heard more than they really should have. Sadly I am not alone.

We put parental controls on technology to prevent little ears from hearing words we don’t want them too, we have children’s TV channels designed to protect vulnerable children from the adult world yet we put our most vulnerable addition needs children in situations daily that cause their little ears to hear more than they should.

Isn’t it time we thought of a better way forward?

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A letter To The Parents Of A Struggling Child

Dear parent,

I know at times you feel so helpless and alone as you watch your child struggle. When we give birth and hear our babies cry for the first time from that moment on we want to help them and make everything right for them.

We don’t want them to be ill.

We don’t want them to be unable to eat.

We don’t want them battling for breath.

We don’t want them in pain.

We don’t want them to be the last to meet milestones.

We don’t want them emotionally or physically or socially struggling.

There is something about watching your child struggle that tears your heart in two. That feeling of uselessness, helplessness, having no control over things. That feeling that you should be the one to fix it all for them, comfort them, make it all better…but you can’t. That feeling of not being able to meet your child’s needs, whether that’s feeding them, holding them, carrying them or teaching them. That feeling of having to accept help for the sake of your struggling child.

I’ve been there too.

I know that feeling of failure well. That gut wrenching feeling as a parent when a nurse, therapist, teacher or doctor is the one that gets your child’s first eye contact or enables your child to say their first word. I understand that feeling of being robbed of something that should have been your privilege, not theirs. I’ve experienced that feeling of despair, the wanting to give up, the inadequacy that comes with having a child who is struggling.

I’ve cried so many tears and I’m sure you have too.

No-one wants to be the parents of the child who isn’t talking when all their peers are. No-one wants to be the parents of the child who has failed their six week check up, two year check up and even their pre-school check up. It’s a kick in the teeth for all the hard work and investment in your child when all they see is still a struggling child.

I know the fights. The fights to prove you are a good parent and your child’s struggles are not due to neglect. The fight to get your child help. The fight to be listened to. The fight for the right educational environment for your child to thrive. The fight for basic equipment to help. The fight for support. The mental fight to get through each day.

I know the fears: for the future, for their education, because they are so vulnerable.

When you are the parent of a struggling child it means you struggle too.

Too many judge.

Too many are ignorant.

Too many refuse to understand.

Too many ignore.

Having a struggling child is lonely. It’s isolating. It’s heartbreaking.

But I also know you are doing everything you can and more. Your determination, courage and strength shines through you. No-one could love, encourage or support your child more than you do.

You’ve got this.

My child struggles too. Their struggles may not be the same ones your child faces but that doesn’t matter. We are still in this together.

Stay strong my friend. There will be better days ahead.

Your child may be struggling but that’s not your fault. Hold your head high and show the world who you are.

You are not a failure for having a struggling child.

You are not to blame.

You are a wonderful parent.

Never ever forget that,

Yours,

A fellow parent of a struggling child.

My Disabled Child Is Still A Child

Before I had children of my own I genuinely thought parents pretty much stuck together. I mean after all aren’t we all in the same situation struggling with lack of sleep, worrying for our children’s future and tidying up toys every day?

Then I had a disabled child and I discovered that somehow that changes things.

Other parents no longer talk to me about standing on Lego because they assume I won’t relate since my child can’t play with Lego.

Other parents don’t mention all the activities their child does after school and how they feel like a glorified taxi driver taking their kids to dance, swimming and karate. They know my child isn’t able to do these things so they don’t bother to share about them with me.

Other parents don’t message me for advice even if my child is older than theirs because they assume I won’t know anything about normal child development since my child is disabled.

I could go on. I’m sure you get the point though.

There is an assumption by other parents and society in general that my disabled child is somehow not really a child like other people’s. They assume my parenting is nothing like theirs.

So let me tell you something very important: disabled children are still children.

They still have toys.

They still watch TV.

They still try and get away with more time on technology than they should.

They still turn their nose up at sprouts, throw toys in frustration and demand all our time.

They also outgrow clothes and shoes quickly, lose teeth at the same time as other children, go to school and learn, hate homework and catch the cold like other kids.

Yes every single child is unique, every life is different and my child struggles to do many many things other children do naturally (like speaking for example) but that doesn’t mean I don’t want to hear about your parenting issues nor does it mean I won’t relate.

You might be surprised to know we actually have more in common than you realise.

I have a disabled child. That may mean some parts of parenting are a little different to others but at the core my son is just a child like any other and I am a parent like other parents too.

Please treat me like any other parent. Please see my disabled child as a child just like yours.

We are all in this together and we have much more in common than we both realise.

Oh and my son may not play with Lego but I can still appreciate how sore it is to stand on. You have my sympathy there.

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.

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.

My Child’s Mental Heath Concerns Me

I held my new born crying baby in my arms like she was the most fragile piece of china worried she would break in my arms just by being held. She didn’t break, of course, and many people told me ‘babies bounce’ and ‘they are much hardier than you think’.

Except my baby isn’t resistant.

Only it wasn’t her little bones that were precious and fragile, it was her mind.

How do you protect a child’s little mind from breaking?

She was always nervous. So scared to crawl that she eventually just shuffled on her bottom instead. So terrified to take her first steps I thought it would never happen. Scared of other people, frightened of noisy toys, crying if she was separated from me.

‘Some kids are shy’ they would say.

‘She’ll get there in her own time.’

‘She’s picking up on your anxiety’

‘You are an over protective mother.’

I knew my child though. I saw the fear in her little eyes. It’s more than how I parent and I was right. Eventually she was diagnosed as being on the autism spectrum. I was told she was anxious. I knew that already. She was different from all the other children. So much younger emotionally and socially. She was terrified of other people. A little perfectionist.

I watched on as what little confidence she had fell off her like leaves falling from a tree in the autumn wind.

Vulnerable

Scared

Terrified

Fragile

Her mental health much more of a worry with each birthday she marked.

My daughter isn’t resilient. She can’t ‘shake things off’ or ‘let things go’. She can’t ‘brush things away’ or ‘just forget them’. Little things are major to her. Anxiety rules her life.

If she comes home from school and a toy has been moved she breaks down. If she wants something from a shop and it’s sold out she can’t sleep that night. If she gets a sum wrong or spells a word wrong her anxiety builds up to the point she won’t eat. She can’t cope with being wrong. That’s not my parenting that is severe anxiety, autism and mental health difficulties.

They told me children are not fragile. But my child is. Her bones are strong, her body healthy but her little mind is fragile.

I was right to hold my baby gently worried she would break. I could feed her, teach her, hold her, encourage her but I can’t make her mind any different to what it is.

My child’s mental health concerns me. I worry for her future.

The Loneliness Of A Special Needs Sibling

It’s just after 6:30pm and her brother has just had a seizure in the bath. While her mum pulls him out and dries him her dad rushes upstairs to help.

And she was left alone.

It’s 11am at the retail park and suddenly her brother has disappeared. Her mum shouts his name and runs to the lift knowing her brother loves them, while her dad runs to the door to make sure her brother hasn’t ran into the car park.

And she was left alone again.

It’s 2:30pm on a Tuesday afternoon and she is with mum and her brother at yet another hospital appointment. Her brother’s height is taken, his weight measured and the eye specialist looks into her brother’s eyes while talking to mum in words she can’t understand.

And it feels like she isn’t there at all, even though she is.

Life feels all about her brother. She can only go places if HE is well enough, if HE can cope with it, if there is provision for disabled children. She hears others at school talk about zoos, trampoline parks and ice-skating rinks but she has never experienced those. She could tell them about tonic clonic seizures, communicating with a non verbal brother or what an occupational therapist does. She knows that isn’t what anyone wants to hear about though.

So she just stays quiet.

She does her own thing. She finds her own way of coping. She is the epitome of resilience, the definition of bravery, the personification of inner strength.

But she’s lonely. So very lonely.

She’s typical of so many siblings lost in the shadows while the limelight shines on the sick sibling, the disabled brother, or the struggling sister.

Expected to carry on with homework while her brother screams, to try and watch TV without complaining while her brother has a meltdown, to still sleep while her brother bangs toys throughout the night because he sees no need for sleep.

These are the siblings whose loneliness we don’t like to see. We don’t like to admit that disability affects the siblings as much, if not more, than the child who is diagnosed. It makes us uncomfortable to think we have caused an innocent child to experience mental pain while we care for the physical pain of another child. We hope beyond hope that things will settle and one day we will ‘make it up to them’ for the times we couldn’t make their school play because their brother was sick or in hospital. But that day never seems to come.

So she just carries on.

Until one day she says ‘it feels like I am invisible sometimes.’

Then you realise the utter loneliness, the repeated rejection she had felt and the fear she experiences daily. You vow to change things but nothing, nothing, will take away her loneliness.

I promise you siblings, you are NOT invisible. You are the real hero’s in all this. You are the ones who’s smile keeps everyone going, whose humour brings life and whose strength inspires.

You may feel lonely but you are never alone.

I promise you so many other siblings understand and they have been where you are.

You got the raw deal here and I’m sorry.

This post first appeared here. Do check out my other blogs on Firefly (www.fireflyfriends.com) and my regular updates and thoughts on my Facebook page (faithmummy).