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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When everyone wants a piece of you

Another day. Another appointment. Another night of being woken through the night. More phone calls. More screaming. More bodily waste to clean up. More pressure. Never-ending stress.

Every parent gets stressed. Everyone needs a break at times from the 24-7 demands of raising children. But sometimes the added pressure of having children with additional support needs just becomes overwhelming when the days and nights become one, the paperwork piles up and everyone wants a piece of you.

What do you do when a professional calls you and you need to take the call yet your child needs your urgent attention at the same time (I could list any number of things they could be doing here like smearing faeces, climbing in a bath of water fully clothed, feeding the fish a tub of sudacream, eating frozen food from the freezer or escaping out of a window or door)? What do you do when you HAVE to find the time to complete urgent paperwork but your eyes can barely stay open and your mind can not focus due to exhaustion? How do you explain to a child with very limited understanding that their routine needs to change to go to yet another hospital or clinic appointment? What do you do when one professional says one thing and another disagrees and you are caught in the middle? How do you cope when mealtimes make you cry because your child just won’t eat and the other one just won’t stop eating? How do you remain at peace when your child comes home from school wearing clothes for the opposite sex because yet again he has gone through four pairs of trousers in a school day even whilst wearing nappies?

Everyone wants a piece of me.

I am expected to turn up at meetings and act professionally even when at times my heart is breaking. Crying is meant to be reserved for the privacy of your own home and only makes professionals question your mental stability if seen in public.

I am expected to follow through programmes designed by professionals who think they know my child better than me and who think I have nothing to do other than run with their latest plan.

I am expected to answer phone calls and emails in a timely, professional manner as if working in an office environment while the washing machine is spinning in the background, the children have technology at full blast (what other volume is there?) and the window cleaner is knocking my door asking for money.

I am expected to turn up to the right appointment, at the right day and time, with the right child, focussed, prepared and calm with a child who is alert, receptive and willing to participate in whatever therapy they are having today. And all this with a smile on my face and an enthusiasm for the programme.

I am expected to do homework with my children, take them to activities to ‘broaden their horizons and stimulate their interests’, give them a healthy diet and exercise, nurture their talents and spend quality time with them, when in reality we spend our evenings making chicken nuggets for tea again, watching the same programme on TV for the fiftieth time and coping with screaming children, toys and technology being thrown across the room and being physically attacked because I dared to run them a bath!

Schools expect me to jump at the first mention of ‘parent involvement’, hospitals expect me to fly my children to appointments (well they certainly don’t expect me to park given the lack of spaces they provide!), social workers expect to come to a house that is well run, clean, yet homely and comfortable, and my children need me to hold them, love them and help them all the time.

Yesterday I had one meal. It was one of those days. And the fact is I am not alone. There are so many parents in the same situation. Living with stress that is incredibly high, balancing meetings, appointments, therapies, professionals, children and the demands of running a home whist caring 24/7. Because despite the volume of people involved with my children it will still be me tonight who cooks them both tea, has clean clothes for them to wear to school tomorrow, reads them the bedtime story and kisses them goodnight. It will still be me who lies with them through the night while they cough or cry or scream.

It is me who knows them, protects them, loves them.

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Everyone wants a piece of me. But these two have a piece that no-one else can ever have. They have my heart. Every other piece of me can just wait while I take a moment to hold them. The phone can keep ringing, the post can wait a moment and the emails can stay unread just a little while longer. Whoever else wants or needs me these two always come first.

To hear my daughter cry

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This afternoon my 5 year old went into her room, sat on her bed and broke her heart. She wasn’t upset at not getting her own way or being told off, or because her brother had taken her toys yet again. She broke down in tears because she believes she is a failure. At just 5 years old. How does a mother deal with that?
How do I balance my daughters tender self esteem and mental heath with the need to push her development on and challenge her?
Naomi has autism spectrum disorder. She is neither on the severe end of the spectrum or the high functioning end. Compared to her twin brother (severe asd non verbal) she is high functioning but in reality her autism impacts on her a huge amount. But she does not have learning difficulties and she has a good grasp of language (though a very literal thinker). She does have co-ordination difficulties and communication challenges and socially struggles a huge amount. But she doesn’t need to hear this.
Hearing her cry today, sitting with her and talking to her, I realised that so much needs to change. This little girl needs to feel secure, loved, accepted and believe in herself. She needs encouragement, rewards and a sense of achievement.
She watches while her brother, with all his profound needs, receives certificates at school for ‘star of the week’ for something she could have done three years before. But being in mainstream nursery with over 40 other children each session she just can’t compete. She listens while we talk to professional after professional about the concerns we have regarding her development. And this is going into her spirit.
It never has sat well with me that we take the children with us to see paediatricians, hospital doctors, educational psychologists, speech and language therapists, and many others. While I understand that these people clearly need to see my children, I find it concerning that little ears are hearing adults talk about them like they are not there, and in a way that only seems to address their difficulties and struggles. How would I feel if It was me being talked about? Hearing phrases like ‘struggling with toilet training’, ‘not able to make friends’, ‘still not talking to others’, ‘still not able to dress herself’. While professionals need to hear these things to be able to help it has to be affecting the child’s self esteem.
And it doesn’t just happen in clinic appointments. This week alone a health visitor and disability social worker have visited us at home. And as much as I try to schedule this while the children are out, they either stay until they come home or arrive so late the children are already here. It makes talking very difficult as this is the children’s home being invaded. And once again we are expected to discuss our concerns while having them in the room. For my son this isn’t a major issue as his understanding and comprehension is so poor. But he does hear his name getting mentioned and I am sure he senses he is being talked about. And no amount of distraction takes away from the fact my daughter knows we are talking about her.
And she has had enough.
She has had enough of us discussing how after almost 2 weeks of the nursery putting her in pants she has yet to manage to do anything in the toilet.
She has had enough of us telling people she struggles to dress herself and use cutlery and put on her own coat and the many other self help skills a five year old should be achieving.
She has had enough of the pressure to carry out tasks effectively just because she has been given a visual schedule.
She has had enough of hearing she has to be a ‘big girl’ because she is going to ‘big school’ soon.
It is all too much for a 5 year old.
I was told today that no matter how upset she gets, no matter how strong willed against something she is or the fact she seems to not be able to do something I still need to push her. The fact she is upset is due to her controlling me and not being willing to move on with her development.
But there is upset at not being able to achieve like you want to be able to and then there is damaging a child’s mental health.
I wish that professional could have been here today. To hear my daughter tell me how sad she is. To see the damage it does to a child to push them beyond what they truly are capable of doing. To hear my daughter cry.
I’m not entirely sure how we move on from here. We have more appointments next week where yet again we need to discuss some of our concerns about her. And she has to be there. But I am determined to protect this fragile butterfly from any more damage. I refuse to let professionals push her beyond what she can achieve and thus make her feel like a failure. I am determined to make her feel loved, cherished and to have a sense of achievement like her brother. She is beautiful, clever, funny, caring and sensitive. And my mission is to get her to believe this. And to get the professionals to see how talking about our children in front of them is not helpful to their self esteem or mental health.
Today I opened my eyes.
Today I heard my daughters heart.
Today I heard my daughter cry.

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