How a Stranger’s Advice Helped my Autistic Daughter Overcome her Eating Issues

My daughter has always had struggles with food. From the moment she was weaned she has refused, spat out or thrown food away. Her weight has always been a concern yet no-one seemed to take me seriously.

That was until she was diagnosed with autism just before her 5th birthday and on her diagnosis letter they wrote about her limited diet and sensory avoidance with food.

I was so excited a year later when we finally received an appointment with a sensory trained occupational therapist for children with autism.

I was sure this professional would help us.

We tried everything she suggested. We did so many different ‘desensitisation’ activities like messy play, baking and play doh. We had fun with plastic food and real food and we looked through recipe books together.

Yet her eating remained as restricted as ever and her weight continued to drop.

Eventually the appointments drew further apart until there was nothing left to suggest.

If anything we had dropped foods and my little girl was living off small amounts of cows milk, licks of chocolate sandwich spread, peppa pig spaghetti and cheesy pasta from a well know pizza restaurant.

Then at 6 years old she became very ill with pneumonia and stopped eating altogether. It was terrifying! By this time I had managed to get her to drink one brand of orange squash to keep her from dehydration but then the manufacturers suddenly stopped making it and I broke down on the phone to them. (https://faithmummy.wordpress.com/2015/04/17/to-the-woman-on-the-helpline/)

I was watching my own daughter starve herself.

Miraculously we got through it but her eating was as restrictive as ever and we had an urgent referral to child and adolescent mental health. By urgent they really mean three to four months by which time things were at true crisis point. There was no fluid or food consumed the entire school day at this point and very little at home either.

We did everything that was suggested again. We dished up what we were having on a side plate but ignored it if it was refused. We lessened her anxiety by allowing technology at the kitchen table and gave basic food choices. We tried being strict. When that failed we tried being lenient. Nothing changed.

A year later child and adolescent mental health withdrew too.

We then saw a dietician whose plan was supplementary drinks. My daughter refused to drink them.

There were no professionals left to try.

We did everything the professionals suggested and still we could not get my daughter to eat.

Then one day I was chatting to an editor of a site I write for. She asked if I would write a blog for the site but she had a radical suggestion that changed everything. She asked if I could ask my 8 year old daughter why she didn’t like to eat.

A stranger suggested something simple but incredible: ask the child.

So I did. And she told me this: https://autismawareness.com/the-reason-i-dont-like-to-eat/

The site published the piece and it went viral. Thousands upon thousands were touched by the private thoughts of an 8 year old who struggled with eating.

Rachel had never met my daughter. She has no professional training in autism or eating disorders. She is not sensory trained nor a child phycologist. Yet her advice was so simple but life changing. I will never be able to repay Rachel for saving my daughter’s life.

It’s now seven months since that blog was written. When my daughter wrote that she only ate a tiny amount of foods. Her BMI was less than 14 and her weight was on the 0.74 percentile. In other words she was not even on the chart and she was dangerously underweight! She was pale and ill looking with dark circles under her eyes. She had no energy and her mental health was poor. There was a whole lot of talk about feeding tubes.

Naomi’s post reached over 282 thousand people just on the one site. Most importantly though it reached down into my heart. I read and reread her thoughts and radically changed how I fed my daughter.

I took meals to where she was.

I let her eat in whatever way she felt comfortable.

I made sure food never touched.

I stopped nagging her to eat.

I bought and cooked what she liked the way she liked it.

We stopped eating at the kitchen table and let her eat while watching you tube or TV.

Seven months later and no-one is talking about feeding tubes anymore. Her BMI is now 15.4 and she is on the 4th percentile on the chart for her weight. She now has twenty items she will eat compared to four seven months ago.

My daughter still has an eating disorder. She still has autism. But we are making progress thanks to one stranger’s life changing advice.

What can we all learn from this? Listen to what the person you are trying to help is saying. Really listen. What works for one person is not always right for another.

Oh and always be open to advice…even if it comes from a stranger!

Rachel holds a very special place in my life. She was the stranger who helped my autistic daughter overcome her eating issues.

There is no payment or thanks ever enough for something like that.

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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.

We came to an understanding…

I had plans for this summer. My son also had plans. The difficulty was our plans were very different.

Isaac is six. He has autism and global delay. He has neurofibromatosis. He also has huge sensory issues, rigid thinking and a massive love of lifts and hand dryers. He has no spoken language.

So when school finished for seven and a half weeks his plans involved food (mostly mashed potato and gravy), lifts, hand dryers, food, hand dryers and more lifts…and maybe the occasional ride on a train.

I, on the other hand, wanted day trips, parks, picnics, garden play, road trips, time seeing family and shared adventures with him and his twin sister.

Someone had to give….

We came to an understanding and it went a bit like this:
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I took him to a park…and then we went to a local supermarket where he could see the hand dryers.

I got what I wanted. He got what he wanted.

We were both happy.

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I took him to soft play. He climbed about and even came back for a huge tight cuddle…which was his way of really saying ‘let’s go to the toilets now and see the wonderful hand dryers mum!’

So that is what we did.

He would play for a bit and then watch those dryers a bit more.

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I took him to pottery painting. He humoured me by putting on the apron (with support) and putting a tiny amount of paint on his model…and then he tore that apron right off and found the toilets to look for a hand dryer!

He has no problem communicating what he wants when it comes to his agenda…

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I took him took him on a train ride to a big city. His favourite place there was the lift at the train station! Nothing else mattered.

We traveled for an hour by train just to see a lift! But you have never seen a happier boy than Isaac was at that lift!

By now we were coming to an understanding.

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I decided to try to have a day without lifts or hand dryers…

I took him to the park again. This time all he wanted was the bushes at the side of the path! He felt them, watched them, heard them and even licked them. Well, what else did I think he would do at the play park?

This is life with Isaac. He had no idea others were staring at him.

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We had an invite to a family event at a local restaurant. Isaac made me so proud sitting at a large table and eating his meal (mostly using cutlery) and even having some pudding. But that was followed by an full 20 minutes in the toilets at the…well I think you probably know by now where he wanted to go to.

It wasn’t like I was hoping to speak to those relatives anyway…

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A charity invited us for a day trip to the safari park. Isaac showed not one second of interest in any animal. In fact he never even glanced at them.

But when he saw a sign for toilets he smiled, ran, and flapped with excitement.

I don’t expect he will go into veterinary care when he is older…

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I took him and his sister on a steam train ride. He did enjoy looking out the window at the passing scenery and he did enjoy eating in the cafe. But if he could talk I am pretty sure his highlight would have been that the toilets had his favourite hand dryers in…the ones with buttons to press.

It is what it is. He sees the world in a very different way. And sometimes just having him with me is a bonus.

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By the end I just decided to run with it. I only had to look at the excitement in his eyes and the happiness on his face to know that lifts and hand dryers are the most important things in his life. And if I want to get anything achieved these are the motivating factors to use.

I still would have preferred to have spent summer building sand castles, eating ice-cream, visiting castles and museums and time together as a family building memories. Hand dryers are loud, functional things that I would use only to…well dry my hands really! Lifts are convenient and quick ways to change levels…and that is when my interest ends.

But love takes you to places and has you do things in life you don’t expect.

And so I have spent an insubordinate amount of time this summer listening to hand dryers and watching lifts. And in his own way we have had fun. I had my day trips, parks, picnics and quality time with my son. And he had his fixations.

Life is about compromise. Love is amount accepting someone,however different to you they are, and not always wanting to change them. Making things work is about coming to an understanding.

I have had a lovely summer. Isaac has had a magical time. We just spent our quality time in places I never really imagined.

Even his twin sister seems to have come to an understanding…image

Am I doing the right thing?

Self evaluation is a very positive skill to have. All good parents stop and think at times ‘am I doing the right thing’ right from the very moment their child is born. Decisions about wether to breast or bottle feed, what sort of clothes to put on your baby and where they will sleep are all everyday personal decisions all parents face. And there will always be others who feel you are doing it wrong.

But what if your children are not meeting milestones? Or they receive a diagnosis of any sort that makes ‘normal’ development more of a challenge? What should be a time of needing more support and encouragement often becomes not only the time when others judge and question you more, but it also brings with it an even greater level of self-doubt as a parent.

Did I do anything wrong when pregnant? Was my birth to blame? Did I feed my baby the wrong foods or give them inoculations that damaged them? Should I not have gone back to work so early? Did I not bond with them enoughh or sing to them the right songs?

So many of us have been there. I have too. And even though my twins are now 6 I am still asking myself almost daily ‘am I doing the right thing’?

It seems that at times I am controversial without even meaning to be. Even blogging publicly about my children seems to make some people feel I am damaging them. I am not naive. I am well aware that one day my children could read my blog. In fact I will be letting them both have a copy when the time is right. This is my journey but it is very much their journey too. I actually hope having a written record of how far they have come is helpful to them in their own way as they begin to understand more and question who they are and what their diagnosis means to them. Naomi aimagealready shows much more awareness and we talk together about her autism, her brothers autism and her brother’s neurofibromatosis. I don’t believe in hiding these issues from her and there is not one blog I would be embarrassed for my children to read one day.

Naomi has recently been assessed and approved for a wheelchair. I never really thought that would be controversial either. No-one seemed to question when her brother got one months ago but somehow because she can talk, she can walk and she attends mainstream school it seems that I am ‘making’ her disabled by putting her in a chair. Maybe I am more vocal about her brothers difficulties, maybe they are more obvious than hers, or maybe the fact he attends a special needs school seems to make it more ‘acceptable’ for him to use a wheelchair. But Naomi has her own struggles and I am not pushing her to use a wheelchair if she is not comfortable doing so. I have asked myself many times if I am doing the right thing pushing her around places where she may be seen by others in her school or community. I know the impact this could have on her far more than she understandimages at just 6. But her safety, her pain level and her comfort also must be taken into consideration. And whether she is in a wheelchair or walking she will sadly always come across people who will stare, laugh and bully. It is my job to help her cope with this as she grows and develops greater awareness.

My son loves lifts and hand dryers. He craves them much like a smoker craves a cigarette. And so I take him to them. And I let him press the button to turn the dryer on or call the lift for someone. It brings him huge delight. And the majority of people I meet are happy to let him have that pleasure. But the other side of this is that sometimes in life we go into a shop and we have no need to use the lift or the dryers and therefore his sensory craving can not be met. And that results in meltdown of epic proportion. And then I once again question myself ‘am I doing the right thing?’ Do I allow him to have his craving in small amounts to allow me to achieve other things I want, or do I insist on carrying on with my business and that he has to learn that life is not always about him? Everyone has their own opinion on this and people will judge the fact I have deliberately taken him to retail parks just to see lifts and not buy anything. It is a balancing act and I have to live with my son and my decision. So I do what is right for me and him and my family.

People may be shocked to know I have resorted to feeding my six-year-old baby food at times just to get her to eat. I have allowed both twins dummies way beyond an age where it is publicly acceptable, and I have seen to their personal hygiene needs from the back of a car many a time. And just yesterday I took my eyes off my son for a second and found him alone in a supermarket lift (he is non verbal and could have been anywhere!).

Everyday is a challenge. Everyday I am making decisions based on today’s needs and tomorrow’s future. I live for today but am very aware of the future repercussions that my actions may have on both my children.

And I know I may get it wrong. And so will you.

Because I am human. As as a mum I have the future of two very special children in my hands. I take that very seriously.

It is ok to disagree with me. It is ok to worry about how things I do now may affect my children’s future. It’s even ok to do something different with your own children.

Just know I love my children. And I am doing what I feel is best for them. Both now and in the future. And every single day without fail I am thinking to myself ‘am I doing the right thing here’ because my children never came with a manual. None of them do. And when they have extra support needs that makes things so much more complicated.

Am I doing the right thing? Time will tell I guess.

As long as they wear it!

The weather is getting colder and the kids keep growing, so I took myself to the shops today to buy them some new winter clothes.

Like everything else though it was much harder than I thought it would be.

So it seems everyone is into the film Frozen and this is reflected in all the clothing stores. My almost six year olds have never watched a film in their life and when my daughter saw a clip from Frozen in her nursery last year it gave her nightmares for weeks. Numerous other characters appeared on t-shirts, jumpers, and pyjamas for the girls yet I had no idea who they were. We watch very little TV. My daughter’s current obsession is Octonauts and like her previous obsession of Thomas Tank engine it seems that girls are not supposed to like such things, and certainly there is no demand for pink items with such characters on. She will, once again, be most disappointed. Neither is she a huge fan of all things ‘girlie’ like tutu’s, bows or frilly socks. She would far rather wear a jumper and leggings to play on the floor with trains or her little characters from Octonauts.

She also has sensory issues. She likes soft, cosy and lose fitting items. She hates tight fitting or hard fabrics like jeans and much prefers her arms to be covered. She only likes soft tights and only when the seam is ‘just right’. Socks must be neither too tight or too loose and this poses a real problem just now as her feet are at that transition size when she is right at the bottom end of the sock size and thus socks are all baggy and loose until her feet grow even more. But the smaller size socks are right at the top end of her shoe size and thus too stretched for her to feel comfortable. She is petite and very slim so that also makes it difficult as elasticated items often just fall right off her.

If I thought she was hard her twin brother is even worse! For 440 days now (yes THAT many!) he has only ever wore his school jumper EVERY day, including his birthday, Christmas Day and every weekend. I have tried every style of red jumper imaginable but nothing will encourage him to even try anything else. His school uniform includes jogging trousers (far easier in an incontinent child) but he used to happily wear any trousers that I put on him. But in the last few months he has refused to wear jeans or chinos or corduroys and now insists on jogging trousers everyday too. There isn’t much selection of colours in jogging trousers and even if there was there are only a limited amount of colours that match the traffic light red of his school jumper. At least a jumper is appropriate winter clothing!

He refuses to wear a hat and gloves. He sees no need to as he rarely feels the cold. It is a massive battle to even get him to wear a coat. But he will at least wear wellington boots, preferably if they are red! He would happily be bare foot, even outside!

Clothes for Isaac have always been an issue. He never walked until three and buying trousers for a toddler who could not walk was difficult as they all had pockets and thin knee areas that are useless to a crawler. As he has aged less and less trousers have the elasticated waist required for a child in nappies and it is all button flies and clips suitable for children developmentally the same age as their clothing size. And then there is the age appropriate issue of bibs and motifs. While my almost six year old would still be delighted to see socks with Igglepiggle on or Peppa Pig, it is assumed that those wearing bigger socks would rather see superheroes, Lego and characters from computer games. Isaac has no idea what any of these are. His feet may be the size of a six year old but his brain is still that of a young toddler.

He will be requiring Velcro fastening shoes long after his peers have learnt to tie. I pray Velcro shoes stay in fashion for years to come.

It doesn’t matter to my children where I shop. I will be cutting the labels out of the clothing anyway! They are not brand away or swayed in any way by peer pressure. They have no concept of cost.

At the height of Halloween I didn’t need to enter into the frenzy at the costume areas either. Neither of them will entertain dressing up at any time. They are happy with who they are and imaginary play is not a skill high on their priority list.

In the end I settled for another few pairs of the same joggers I always buy for Isaac. And Naomi got a new fleece jumper and some warm soft leggings. And both of them got some new pyjamas. Not that they are bothered really.

Clothes are just functional to them. And since Isaac stripped off in the middle of a restaurant last weekend it hardly matters what I buy him…the important things is he wears something!

I choose my battles carefully. And I buy what they like not me. After all it is them wearing it not me.

Are they warm, comfortable, happy and wearing something? Well that is all I ask.

Winter, we are ready for you 🙂

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