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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Do you ever wish you could ‘switch off’ your child’s autism?

Sometimes I do.

When I just need to get bread and milk from the local supermarket and I’m tired, in a hurry and just want ‘in and out,’ I wish I could ‘switch off’ my child’s difficulties with the music, crowds, smells, his absolute NEED to see the lift and his inability to stay beside me safely. Just ten minutes without autism would make that task easier…for us both.

When he’s crying in pain and unable to communicate why or where it hurts. How frustrating and distressing that is for us both. I wish I could ‘switch off’ his communication difficulties just long enough for me to be able to understand and help him.

When I am attempting to make a packed lunch for a school trip and I’m in tears because ‘lunch’ to him means a hot meal and I know everything I make will be refused. Just a half hour meal with autism ‘switched off’ would be a blessing for me, but more so for him. I know he doesn’t want to be so rigid but he just can’t prevent it.

When there’s roadworks and I need to drive a different route. To watch his face screw up in disgust and confusion followed by the onset of tears and challenging behaviour is torture for us both. I wish we could ‘switch off’ autism, just during the journey, not forever.

When I need to get medication into him. Just one minute of autism ‘turned off’ would allow vital epilepsy medication to be swallowed so much easier. While things are improving it is often very challenging and distressing for everyone. Antibiotics leave us both traumatised.

Right now though more than anything I wish I could ‘switch off’ severe autism as we face a period of very challenging medical difficulties. My non verbal son has recently been diagnosed with a growing brain tumour. He needs multiple anaesthetic’s and a brain tumour biopsy followed by possible treatment that will be invasive, challenging and intensive. I want him better; he needs to get better. The alternative isn’t something anyone wants to think about. . The presence of autism complicates even the simplest of procedures and we don’t have the time to ‘mess about’ right now.

Time is not on our side so having three months of acclimatising to new surroundings isn’t an option. Printing visuals of all the doctors we need to see, making timetables of when they will be seen and watching videos of procedures before hand to prepare my son just aren’t options any longer. I can’t just say ‘I couldn’t get him out the car’ to his neurosurgeon when they have theatre all prepared and scheduled for a brain biopsy. When appointments suddenly need changed due to things progressing fast I can’t say to specialists ‘well it’s not on his timetable so he won’t cope.’ ‘Sorry he stayed awake all night again as usual last night so we need to sleep today’ just isn’t an option when there’s an MRI machine booked for yet another scan, or nurses waiting to run more tests. There’s no option to say ‘don’t worry about his meltdown. I’ll just sent out another appointment in six months and we’ll try again then’.

We haven’t got time to put any communication device in place for my non verbal child any more, not that he has taken to any in the last ten years anyway.

Medically we are facing a crisis and severe autism doesn’t ‘do’ crisis. My son doesn’t do ‘sudden change’ or even just ‘change’. He doesn’t cope with new people, new places, being touched, sitting still while people talk, having needles put in, waiting around in clinics, or even having a simple plaster on!

I fully accept and love my son, autism included. I’ve never had an issue with flapping, watching the same thing lots, communicating in his own unique way or even needing routine. In fact I’ve developed strategies, patience, and understanding and I really wouldn’t want him any other way.

But I would be lying if I didn’t say that right now, in the middle of medical difficulties that can not be ignored or delayed, I would not love to ‘turn off’ autism just for short periods of time to make things easier for him, and also for me.

Autism can be a blessing and it isn’t something I hate but it can also make life challenging and right now we have enough challenges to face treating his brain tumour and we could do without the struggle just to get him inside a new hospital or the inability to wait for his name to be called and the terrifying fact his autism means he can’t communicate when or where something even hurts.

I thought in the past I’d like little moments of being able to switch autism off but right now I’ve never wanted that ability more. Autism is making an already challenging situation so much harder, not just for me but for my son. I’m not wanting my son to be non autistic just less rigid, less anxious, less ‘stuck’ during a time when co-operation, flexibility and communication are vital.

99% of the time I have time to do what he needs to help him. Unfortunately right now we are living in that 1% and I can not even adequately express how much simpler things would be right now without the added issue of severe non verbal autism.

Have I ever wanted to switch autism off? Right now for my son’s sake…yes! Most of the medical staff treating him would probably agree with me too.