The reason I don’t like to eat

My beautiful blue eyed girl has recently been diagnosed with an eating disorder. Three years ago she was diagnosed with autism. Last week I sat with her and we talked. This is all her own words. She asked me to share so others understand.

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Sometimes bedtime is the best time. It is the one time people leave me alone. They stop asking things like ‘are you hungry Naomi?’, ‘would you like a drink Naomi?‘, ”are you sure you don’t want a snack?’
Why do people eat and drink so much anyway? I have things I much prefer doing like watching you tube and playing my own games with my toys.
How am I meant to eat or drink when I am doing something else?
Sometimes people even want me to change rooms to eat.
School do that.
Why?
I am comfortable and happy and then you make me move and my brain is thinking about where am I going, did I leave anything I might need, what if things have changed when I get back? What is someone touches anything?
Those things scare me.
You want me to move to somewhere, sit down and eat what you have made.
But I didn’t ask for it. I did not know it was happening. No-one told me I would smell different things, hear different voices and touch different stuff and now you want me to even taste things?
It is too much so I just freeze.
I can hear you but everything is fuzzy.
I am so scared. I am scared that people are looking at me. I am scared everyone is going to talk to me. I feel sick.

Why do people eat funny things? People eat things with bright colours and I can’t understand that. My body is a pinky beige colour. That is a safe colour. Like a light brown sort of colour. If my skin is ok then things that colour are ok too.

You want to know why I still sometimes don’t eat things that are my skin colour? Well it is just wrong. And my brain is all upset about food. When I play with my toys they look the same, they stay the same and they act the same. Sometimes I eat something and it tastes nice, it is the right colour and it fells nice and soft in my mouth. But then some days I eat what you tell me is the same and it isn’t the same. It is not the way I saw it the time I liked it. It does not have the same softness and I get upset. You ruined it. Why do people do that? I order my toys in lines so when I look at them they look the same. I feel safe like that. But you don’t let me do that with food. If I put it in order it makes sense. I want to know it is ‘right’ and I need to check it. What if it is wrong and it goes inside me? That would hurt me.

That is why I have to have one thing then another. My brain tells me ‘this is nugget skins’ and I remember what they taste like. You damage it if it has sauce or potatoes on. Then it is not nugget skins but some weird thing my brain does not know. So all nuggets are dangerous. And I get scared again.

I like soft. When I chew sometimes I get a little tiny bit to swallow and sometime a bigger bit. That means it tastes different and it does not make sense. Nibbling is safer. My teeth don’t want to touch stuff because then it tastes of teeth not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavour do they?

I feel sick sometimes. Mummy says it is hunger but I don’t get it. My tummy makes me feel sick and people say it needs food when it already wants to get rid of what is in there so why add more? That does not make sense to me.

I don’t think people like me sometimes. They shout at me and keep making me eat. I get scared and sad, Please leave me alone. I like it best when mummy puts things I like near me when I am playing so my toys can look at it and tell me it is ok. I know my world is ok then.

All day long people eat eat eat. And I get scared scared and more scared. I eat at breakfast and then you want me to eat again for lunch or snack at school, then dinner, then supper.

I want it to end some days. That’s why bedtime is the best for me.

Mummy asked me if I dream about food when I sleep. No way! I dream about trains. Thomas tank engine is brilliant. He never eats and I like that!

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This article first appeared here

 

She is NOT a ‘spoil brat’ she is a child with serious food aversions!

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Have you ever joined any food groups on social media or watched food programmes on television? I have to say I usually avoid them as someone who generally has little time to watch TV and who struggles to cook.

However I was chatting to a friend today who had been watching TV recently and heard a famous chef on prime time TV talking about ‘fussy eaters’ and saying that it was all down to the parents ‘giving in.’ She felt she had to say to me as she knows the struggles I face daily with my daughter.

Just minutes later a fellow blogger posted how she was outraged having read on a huge Facebook group relating to food that a professional was advocating ‘starving’ fussy children until they gave in and ate!

I should be used to this by now but it still hurts. People feel so open about judging my parenting and my cooking and even my mental health because I happen to have a child who has serious food aversions and struggles to eat.

It is a daily battle for me to remind myself I am not to blame!

IMG_1851Every parent wants to feed their child. It is fundamental to their welfare and brings us so much satisfaction to know they are happy and nourished. My daughter was a wonderful breast feeder and despite having low birth weight, she was settled, happy and growing on breast milk. Then I began weaning and suddenly everything changed! From the very start she refused solid food and eight years later we are still struggling.

We have seen paediatricians, dieticians, health visitors, mental health nurses and psychologists and we are still struggling.

If I put food in front of her and tell her ‘it is this or nothing’ she would starve.

If food touches she has a huge meltdown and stops talking and interacting. It traumatises her beyond belief.

Every single day is a struggle. People say it is my fault, like that helps. People say she is controlling us, like that will make her eat! The worst ones are those who say she is a ‘spoilt brat’ when in fact she is a child with extreme anxiety and food aversion! It is heartbreaking.IMG_1850

We have a few foods she will eat and those are saving us from the added trauma of a feeding tube (a trauma that could result in no food or drink ever going in her mouth again). She has only two things she will drink. Her weight is a serious worry as is her health as she walks a fine balance between being ‘well’ and ‘we may need to intervene’.

We have days she will eat and days she won’t.

Her food aversion and eating issues are complex and related to many things and not just ‘fussy eating’.

If I am to blame then why does her twin brother have no issue with food and in fact will eat anything out in front of him?

There is no history of eating disorders in my family.

My children are not fed on junk.

My daughter is not a spoilt brat and neither will I allow her to starve. That is known as abuse!

Food aversion and eating disorders are REAL. TV personalities should know better. Professionals should know better. Ignorance is rife about this matter and it is destroying children and families everywhere.

Please stop judging!

My child is NOT a spoilt brat! She is caring, loving, gentle, beautiful and kind. She also has food aversions and an eating disorder.

Unless you live with this it is hard to understand. Ignorance from professionals and TV personalities is not helping.

Food aversions and eating disorders are no laughing matter. How would you feel if it was your child or someone you loved struggling?

 

A version of this blog first appeared here

 

The seven hurtful things people say about my child with an eating disorder

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My beautiful blue eyed daughter has recently been diagnosed with an eating disorder at the tender age of seven. While some people have been very supportive others have said some things that really hurt. Here are the most hurtful things I have been told so far:

1. She will eat when she is hungry!
No she will not. If she did she would not have been diagnosed with an eating disorder. She doesn’t ask for food or drink and is not aware when she is hungry. She would go all day without drinking or eating and not even realise.

2. That is what happens when you give in to fussy children!
So is giving my daughter the food she will actually eat and keeping her alive giving in to her? So the fact she would starve herself to the point of requiring medical attention should be ignored just so that I don’t ‘give in’ to her? In that case when you next go to a restaurant or take away don’t bother looking through the menu at what you would like just take whatever they give you and eat it! There is a clear distinction between a child with fussy eating, a child with major sensory issues and a child with a complex eating disorder.

3. Maybe if you let her make it she would eat it.
My daughter enjoys making cakes and dinners and puddings. She enjoys shopping for ingredients and following recipes. But she still refuses to eat it. There is a big difference between cooking and eating. While some children’s issues include handling, mixing and cooking food, my daughter will happily participate in these activities until you ask anything to pass her mouth. I wish I could explain why that is, but I can’t.

4. Can’t you just force feed her?
That seems like abuse to me. Yes there have been times where I have had to almost force vital medications into her and spoon feed her yoghurt or pureed fruit just to get something inside her. But force feeding her would not only have a huge phycological impact on her metal wellbeing but it would also send her the message that she has no control or choice. When I tried feeding her before she would simply vomit it back up. She needs to be able to control what goes inside her mouth and learn that food is good. I need to teach her that eating is positive and not a forced issue that creates distrust and upset.

5. You should try taking cookery classes. Maybe she just doesn’t like your cooking?
This is implying that I am the cause of my child’s mental disorder. Thank you for that! Are you aware I have another child who not only loves my cooking but often wants more and eats vegetables, fruit, salad and a good range of meats and carbohydrates? Have you seen the meals I make for my children? I don’t need guilt heaped on me on top of the stress I already have. That only makes things worse.

6. They never had such rubbish in my days. You just ate what was put in front of you when I was young.
I am so glad you were able to eat the food you were given. I am very confident there would have been children and adults around in ‘your day’ who also had eating disorders you just may not have been aware of them. As awareness grows and more people are willing to talk about these things the more it may ‘appear’ to increase, though I believe it has always been there.

7. Let me have her for a week and I will cure her.
Thank you once again for making me feel inferior and inadequate. What you may not realise is that I would never put my daughter through the stress and anxiety of living with anyone else for a week. Her issues run deep and she requires patience, understanding and love. I would love one day for her to be ‘cured’ but until then we work daily with psychologists,¬†her school, paediatricians and a dietician to monitor her mental well being and physical health. Would you manage to juggle all of that?

Eating disorders and mental health in young children are so often misunderstood. Every single day is hard to watch my beautiful baby struggle with something as basic as eating. It is heartbreaking to watch her lose weight. It is scary thinking of the future. She needs support and understanding, not judgement or pressure.

So what could you say to me instead?

How about ‘do you fancy a coffee and a chat?’ Or simply celebrate the good days with me when she perhaps manages her first ever packet of crisps or half of a banana?
We are not going anywhere. And sadly neither is her eating disorder.
Whatever the future holds I will be right there holding my daughters hand. We will get through this together.