Where does it hurt?

Gwynne - 20151003 -29 - highWhere does it hurt?

Every so often I get a rude awakening that my seven year old is not like other seven year olds. Today was one of those days.

The doctor sat in front of him smiling. “Hi, when did you start to feel unwell? Can I listen to your chest? Where does it hurt?”

Questions doctors ask all the time. Questions a seven year old should understand, have a reasonable ability to answer well and have the verbal ability to communicate to a stranger.

My son continued playing his game on his iPad obvious to us all. At seven he is non verbal.

He is different. But today he was the same as everyone else in that centre. He needed medical attention. He could not wait for his regular doctor to reopen. He was unwell.

And once again I had to be his voice. As best as I could. I can not say how he is feeling. I can not say when he started to feel unwell. So I told them what I could. And that is all I ever can do.

I find myself over analysing everything. Was that behaviour he displayed a few days ago the first sign he might be poorly? Did he not finish his dinner yesterday because he felt sick? Is he sitting in my knee because he is looking for comfort or just because he wants to? How am I supposed to know?

They say a mum has a ‘sixth sense’ but this goes beyond that. When you live with a child who can not communicate the most basic of things such as pain you walk a tightrope daily. I could worry about every bruise, (where did he get that? Has he fallen and I never noticed?) every cut, (is that stinging him in the bath, what caused that and should I find it and remove it in case it happens again?) and every behaviour gets dissected like a science experiment. I become more of a detective than a mother. Or do I just let him be a ‘normal’ seven year old and be content that he is not screaming or being sick today?

My son lives with a silent invisible medical condition. But his autism makes it impossible to know how that condition is truly affecting him.

I could panic every time he is sick. I try not to. A wise doctor told me that statistically despite having a progressive genetic condition he is still more likely to have a common childhood illness such as an ear infection, a chest infection or a virus. As true and as logical as that is I still live with the worry he could be ill because of something much worse.

He has a high temperature and neither the doctor nor us know why.

Where does it hurt?

Well right now I can tell you where that hurts for me. It hurts my heart. And just as there is no cure for my sons condition, there is no cure for my hurting heart either.

The week time stood still

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This week has been a battle of an entirely different sort. I am used to battling the system, fighting to get my children the services they need, coping with the demands of autism, living with the uncertainty of neurofibromatosis, sleepless nights and fussy eating; those are just the norm here. But this week brought an entirely new challenge: a very sick child.image

For five days and five nights I battled to keep my six-year old’s temperature at bay. I battled to get her to keep down fluids and to stay out of hospital. I would have given anything to see her flap, repeat phrases from the TV or line her toys up. I held her, I willed her to get through it, I begged her to drink. And when she dropped off to sleep I cried.

Everything just stopped.

Time stood still.

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I was so thankful that the Easter spring break had just finished and Naomi’s twin brother was able to go back to school. Naomi needed all of me and she needed me day and night.

I carried her twice to the doctors. She just kept getting worse. My poor little baby is now on her third set of antibiotics in three weeks. This time it is a longer course and we seem to have finally brought her temperature down.

The diagnosis is atypical chest infection which has built up immunity to the common antibiotics. Her body is weak.
Meantime as life seemed to carry on in slow motion everything is ‘on hold’. A recent meeting in her school highlighted the fact she doesn’t drink and barely eats in school at all. Now because she has been so poorly all her targets have been adapted and strategies will be put in place on her return to try to help her regain her physical strength. The fight for her health is far from over even when her medication is finally completed.

This is when it really hits you.

Having a child with such restricted food and drink intake is serious.

So many people see autism as a minor developmental condition. But for many, like my daughter, it can lead to quite serious health conditions. Autism did not give her a chest infection but her limited diet, constant anxiety and lack of nutrition has weakened her immune system and made her susceptible to infection.

And until she is well again life is on hold.

She is only able to drink one drink right now. And now is not the time to even think about meddling with that. Physio is on hold, her education is on hold, home visits are on hold and so are all her brother’s appointments too. Time is standing still.

And when it starts to move again everything will be different. We will be playing catch up for a long time to come.
But at least I can hopefully be mummy again rather than nurse. I can’t wait to see her playing like this again. It is so hard to believe this was only 9 days ago!

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