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

 

Why I cried when my child had a meltdown on a busy train

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Isaac was so excited. He had watched so many trains come and go from the busy platform while he flapped, clapped and laughed at the doors opening and closing and the whistle blow as each train pulled away. He loves trains and even more so when he gets to ride on them.

Our train was due next so I held his hand and gathered up our bags. I knelt down beside him and told him we needed coach B and we would sit at a table. I was unsure if he understood as at 8 he has complex autism, learning difficulties and a brain tumour. I had already prepared him though and just the day before we had been on the same train for the journey down. He had loved that journey and I was sure he would love this one too.

But as I helped him over the large gap and headed for our booked seats on the busy train I had no idea of the huge meltdown I was about to face.

The seats we booked were not where they should have been and instead of a table of four we were instead booked to sit on a row of two with the other two seats behind. No amount of explaining would work and Isaac sat down in the aisle of the busy train and screamed.

He screamed and he screamed. He banged his head and bit himself. He shook and kicked his legs. He could not cope with such a simple change as a different seat. It was awful.

He was scared. I was scared. He was crying, his sister was crying and I was crying inside. It was like a scene from a horror movie with all eyes on the train on me and my son and I had no idea what to do. My son was a danger to himself and others and was causing an obstruction on a busy train that was unable to stop.

I sat on the floor beside my traumatised son and tried to calm him as a member of the train crew approached us. Through the noise and distress of my son and his sisters crying I somehow managed to explain to the assistant what the problem was.

Immediately she did everything she could to help. She checked every carriage on that train for a feee table but there was none available. I tried to see if Isaac would sit on some fold out seats near a window or perhaps even stand at the door. I had told him we would be sitting at a table together and that was all his brain could process. One little change had disturbed him so much his body was in crisis.

And then a stranger offered to help. With tears in her own eyes she came down to where I was and said she could see the distress of my son and would he like her table seat. She was not angry or frustrated, or even annoyed; she showed compassion and gave up her own seat to see my child happy.
I thanked her and we sat at her table and immediately Isaac began to calm down. Everyone was looking at me and I was waiting for a stare or rude comment or cheeky remark. We got none of that. All I saw were people moved by what this lady did and by seeing a child with special needs so upset.

I was so touched but more was to come.

IMG_1108As the train employee returned she handed me a bag. She apologised for the booking mistake, gifted us a whole bag of food from the buffet trolley and called ahead to our destination and booked assistance for us. She then asked what Isaac enjoyed doing and when I said he loves pressing buttons she lead him through the entire train and let him press buttons at doors, toilets and even on her ticket machine.

IMG_1107She turned Isaac’s distress to utter delight. As I walked through the carriage and past the passenger who had give up her seat I looked at her and cried. She too has eyes filled with emotion as she watched my son laugh as the toilet door opened when he pressed the button.

Yesterday I witness kindness on a scale that changed me. I saw not only autism awareness but autism acceptance and compassion. Instead of stares I saw smiles. Instead of rudeness I saw understanding.

My child is not badly behaved or spoiled. He was highly distressed over a simple change that I had no control over. He was told something would happen and that didn’t go to plan. He could not voice what was upsetting him and he was scared we were on the wrong train since we had no table.

I cried when my son had a meltdown on a busy train yesterday because I hate seeing him so anxious and scared, but I also cried at the actions of complete strangers and simple acts of kindness that I will never ever forget.

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I found this bag this morning as I was sorting though our luggage. It reminded me again of yesterday and why I cried when my son had a meltdown on a busy train.

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There is nothing ‘high’ or ‘functioning’ about her autism at all.

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My daughter attends her local mainstream school. Her grades are average and her behaviour perfect. She is mostly happy to go to school and is never later with her homework. She appears to be an ideal student and school report ‘all is well’.

But all is far from well with my child!

She no longer receives occupation therapy, or speech therapy or any other support in school. Her grades are considered a reflection of the fact she is coping well and therefore her autism is deemed to be ‘high functioning’ simply by the fact she can answer simple times tables questions or write a story.

But there is nothing either ‘high’ or ‘functioning’ about her autism in any way!

The dictionary defines high as “great, or greater than normal, in quantity, size, or intensity.”
My daughter has high ANXIETY, high EMOTIONS, high SENSITIVITY but not high autism!

She struggles with noise, touch, change, lights, attention, demands placed on her, eating, drinking, toileting, self care, socialising and understanding the world. Just because she can read a book, sit quietly in a classroom and sing in assembly does not make her autism any less.

The dictionary defines ‘function’ as “the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role.” Is it ‘proper activity’ for a person to break down in tears and make herself sick because the school has changed her gym day for a few weeks? Is it ‘proper activity’ for a child to be unable to interact at all with other children in the school playground? Is it ‘proper activity’ for a child to stop eating and drinking completely due to anxiety?

Her autism does not disappear when she is at school. All that happens is she conforms. She ‘follows along’ like a sheep in the hope that no-one notices. Inside she is breaking up, welling up and churning up but all anyone sees is a child who can write in a jotter, sit on a seat and tidy up when asked.

A child with autism in mainstream school should never be assumed to have ‘high functioning’ autism simply by the fact they are in a ‘normal’ school classroom. Just because they have the same uniform on as all the others does not mean they are the same.

Inside they are either feeling sick, shaking with anxiety or screaming. The flickering light is causing them pain, the humming of the radiators is making them want to cry and the child next to them leaning on their desk or touching their pencil case is causing them to want to run away. Can you see any of that or do you just see a child with a pencil in their hand writing?

School don’t see the pain in her eyes when I pick her up at three o’clock. They don’t see the teeth grinding, the skin picking and the disengagement. They don’t see the lining up of everything, the screaming and the cowering in a corner. They are not dealing with the sleepless nights begging me to come in bed beside her or the full on food refusal because her anxiety is making her ill.

They look at test scores, conformity, and academic skills and decide that my child at best has ‘high functioning autism’ or at worse is ‘fine.’

She is neither.

She has autism. Simple as that. She is every bit as autistic as her non verbal brother who has severe learning difficulties and attends a special needs school.

Don’t dismiss her struggles based solely on the school she attends.

School can say what they like but there is nothing ‘high’ or ‘functioning’ about her autism at all.

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What it is like to parent a child who can never be left alone

When your baby is born you promise them the world. You promise to look after them, keep them safe and be there for them. When they are tiny and lying so innocently in your arms fully dependent upon others to meet all their needs it is so easy to promise them you will never leave them.
The reality is though that children grow. As they grow they need to learn responsibility, resilience, and independence and all three of these require periods of not being constantly supervised by a parent. I want to say I never ever set out to be over bearing, or a so called ‘helicopter parent’ or paranoid in any way.

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Unfortunately though life changed the way I parent my son. He has multiple difficulties and wether I want to or not he simply can NOT be left unattended at any time, even at age 8.
Going to the bathroom is such a huge risk I leave the door wide open so I can see him and hear him, or I take him with me. Simple tasks like tidying the kitchen can only be done if I am able to see him completely or he is in the same room as me. If I leave the house for any reason I have no choice but to take him with me. I can only shower or bath when he is at school unless there is another adult here to watch his every move. Even popping to the car in my own driveway is a risk I can not take most days.
I do not want to live like this but I have no choice. I am fully aware how damaging this level of hyper-vigilance is to my son and to myself but I am actually doing it because there really is no other way. School have to show the same level of vigilance as do his respite centre so it isn’t just me.

He simply can not be left alone, ever.

Here are a few reasons why:

1. He has no language.

That poses huge risks. He can not ask for help, or shout if in danger. He can not ask to reach something that could fall on top of him and he can not tell us where he wants to go. So I have to be with him.

2. He has no concept of danger. 

He would open the house door and stand right in the middle of a motorway and have no idea. He would eat grass or dog faeces or climb out a window. He would play with knives or drink bleach. I can not leave him for his own safety.

3. He sensory seeks all the time.

He seeks out water but can not swim. He seeks out lights…even if these are car headlights. He loves the noise of smashed glass…he climbs…he swings on doors…he bites and kicks…for his own safety and the safety of others he MUST be supervised.

4. He is violent.IMG_0449

One minute he can be the most loving, gently child but that can change in a moment and he can attack someone. While I know some of his ‘triggers’ for the safety of his sister he can not be left in a room alone with her or anyone else.

5. He smears.

As awful as this is to talk about it is real for so many families. Left alone for less than a minute and so much damage is done. No-one benefits from the clear up and the less it happens the better for everyone.

6. He eats everything.

Bedding is a current favourite but we have had clothing, toys, jigsaws, paper, pencils, lego, teddies and money all eaten regularly. The danger of that is very obvious and unless we wish to have a season ticket to the local hospital he MUST be watched.

7. He destroys.

He is the master of opportunity. Sensory seeking, no concept of danger, little awareness of cause and reaction and no understanding of empathy mean he has fed his sisters tropical fish milk, talcum powder, full tubs of fish food and several Thomas tank engine trains. He has thrown and broken expensive technology like iPads and cameras, he has blocked the toilet with all sorts and poured all manner of things into the bath tub. While he may have no understanding of his actions we do and it is vital this behaviour is prevented as much as possible. The only way to ensure that happens is to be always vigilant.

8. He has seizures.

Medically the consequences of leaving him unattended could be fatal. He has had seizures at the top of flights of stairs, outside and during the night. He could choke on his own vomit, badly injure himself or knock himself out. He must be watched.

9. He is vulnerable.

While he may be living in his own ‘bubble’ sadly he is at high risk for bullying and abuse or wandering off. As his mother I have to protect him. That means having to be with him. It is hard to trust when he has no communication to tell me anything.
People tell me I need to relax and that he needs to learn independence. What they don’t understand is that he never will be independent. The level of care he has now is what is likely to have to be in place throughout his adult life. It really is the only way to keep him safe and to keep others safe too.

I am tired. I cry. My life is severely restricted by the needs of another person. If I want my son to stay alive and have any quality of life I have no choice but to never leave him alone.
What’s it like to parent a child who can never be left alone? 
Lonely.

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I’m not perfect but I am perfect for them


I have a confession to make: I got annoyed at my children today! What? You have done that too? Seriously why are we so afraid as parents to admit we are less than perfect.

 
Last week I took my kids to the dentist at the wrong time. I sent my son to school the week before without any lunch. He is not able to talk so could not tell anyone. I blame sleep deprivation personally.

 
I do my best. It is what we all do. 

 
But still we never seem to feel we get it right all the time. That feeling is magnified when your children have extra support needs.

 
I remember eagerly buying push along toys, walkers and sit on cars for my toddlers, only to have them sit unused in a corner as my son was three before he walked, by which time they were all far too small for him. I tried to do the right thing, the ‘perfect’ thing, but for my children it was anything but perfect.

 
I sang nursery rhymes with my babies. I read to them, talked to them all the time and blew bubbles. Yet still my 8 year old to this day can’t say a word. I did all the right things but for him it just wasn’t to be.

 
I bought this wonderful potty for my kids. You know the ones that sing to them when they pee and even looks like a toilet. That was a total disaster!

 
I took my pre-schoolers to museums, cafes, soft plays, garden centres and farms. One of them screamed all the time and the other was terrified. What seemed the perfect thing to do was in fact anything but for my autistic children who struggled with sensory overload everywhere we went. 

 
imageSo I decided to stop being the perfect parent and instead become the perfect parent to THEM. That meant taking my son to see lifts. It meant taking them on train rides and joining in games of lining up toys. It meant accepting them for just who they are and allowing them to be autistic.

 
The best toys I ever bought them were second hand. I gave up full time work to care for them so I can attend all their meetings, keep up with all their teams of professionals and ensure they get the support they both need. It means I am there to keep the routine they need to feel secure and calm my son when he is in meltdown.

 
Being the perfect parent for them means sometimes making the same meal every night for a week just to see them eat. It means trailing shops to find the only juice my daughter will drink. It means cutting out labels in their clothes and ensuring the materials are soft and not too ‘busy’ so as not to upset them. img_0046It means reading the same bedtime story every night for two years in exactly the same way. It is answering the same question for the hundredth time and remaining patient.

 
Do I get annoyed at them? Of course I do. I am human. Do I annoy them? Absolutely! Do we love each other and hug often? Yes we do. 

 
I am never going to be that parent who shows off a shelf full of trophies my child won at dancing or football. I am not going to be the parent who home makes Halloween costumes or bakes the most incredible birthday cakes. My kids have way too much screen time than is recommended and my son can’t even write his own name at 8 years old!

 
But I know what triggers a meltdown in my son and how to avoid it. I know what makes my daughters anxiety reach sky high and can work through this with her. I know the limitations of my sons eye sight and the fact he can not see pale colours. I know exactly what reading book my daughter has this week and what characters she is into just now. I know their routines for bedtime and school days and follow them like a robot so as not to upset them.

 
Those things don’t make me the perfect mum, but they do make me perfect for them.

 
I am blessed to have them. We are blessed to have each other. None of us are perfect but together we are the perfect team.

My children have autism: I need therapy more than they do.


I remember the very first day I admitted to myself that my children were struggling. They were both 18 months old and neither of them were walking. One never gave eye contact not did he interact much and he had no language. The other could not crawl or roll or even pull herself up. Both relied on routine for everything!

 
I remember one Friday late afternoon making a call to my health visitor and leaving a tearful message on his answer phone.
Looking back that afternoon epitomises the entire point of this blog. Here was I in tears worried about my children while they were happy sitting on the couch watching TV.

 

They were happy…it was me who was sad.


As time went on and appointments started piling up for them both it became quickly apparent that I needed to do every bit as much as my children. Occupational therapists gave ME exercises to do with them, speech and language therapists sent ME on a course while the children were happy at home in their routine with babysitters. The paediatrician gave ME advice while only briefly examining my twins. Early intervention support relied on ME doing more with the children to ‘bring them on’. It felt clearly that I was to blame.

 

While my son scanned object after object across his eye line repetitively, happy doing his own thing, I was silently breaking my heart. When all the other children ran into nursery while my daughter needed carried in, I was the one who emotionally struggled.

 

When my non verbal, not toilet trained, highly delayed son started full time school years later he settled much quicker than I did. He assumed everyone would look after him while I knew otherwise. He had no awareness of the danger of getting into a taxi without mum (he hardly acknowledged who I was) nor any concept of what school was and just went with the flow. Meanwhile my anxiety rose to a whole new level knowing I was unable to know anything about his day, who he was with, what he had eaten or wether or not people were looking after my vulnerable baby.

 
I needed support to help me with that constant anxiety. 

 
When my son has extreme meltdowns lasting hours and he is unable to communicate why, that affects us both. The fact I now have an 8 year old who I still can not communicate with on any meaningful level has damaged me.

 
I need help to work through my feelings of failure. 

 
When I see other children riding bikes, playing with friends, going to dancing or any other of hundreds of ‘normal’ things both my children really struggle with my heart breaks.

 
I need people to understand that some times I need to mourn for the things my children will never achieve.

 
My body is carrying a heavy load. I am on full alert 24/7. I have professionals watching our every move, quick to point out if they feel my children’s struggles are down to my parenting. My mind is constantly alert thinking of our next appointment, the next thing I need to prepare my children for or the next person I need to chase up. After years that affects your body and your mind in ways you can not control.

 
I have had counselling and also have to take tablets to keep depression at bay. My thyroid is whacked and my blood pressure keeps rising. My adrenal glands are failing.

 
My doctors tell me to ‘rest’ but autism never rests. As a parent to two children with autism I can not afford to rest. There is no time off.

 
My children are generally happy. The world they live in is safe and predictable. I need to keep it that way to protect them. They need me. The reality is they always will.

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They are perfect the way they are. They don’t even see themselves as different. It is because I am NOT autistic that I see things differently. I see how they could be mistreated and abused. I see them struggling to get jobs. I see my son requiring support all his life and never living independently. I see their vulnerability. I see their lack of social understanding. I see their need for constant routine. I see their naivety.

 
They don’t need therapy to help them cope with any of that. But I do. 

What if his challenging behaviour is actually a cry for help?

If you were walking home in the dark one night and heard a female screaming for help would you see those screams as challenging behaviour?

What if you were in a hospital and heard a child cry? Would you see that as challenging or would you be more sympathetic?

We all understand the lady screaming on a dark night is desperate for help. We all understand the child crying in hospital is scared and does not understand what is going on around him.

So why when my child with learning difficulties and autism screams and cries does everyone suddenly see it differently?
Professionals have labelled my child as having ‘challenging behaviour’. He kicks, pulls hair, scratches, bites, screams, cries, throws himself down stairs, throws objects in temper, head butts the floor, and attacks people. He is now almost my height and a third of my weight. He is only eight!
He can also be loving, gently, funny, happy, warm, lovely and wonderful. 

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Like the lady screaming in fright on a dark night there are times he is scared. Right now he is terrified of open doors. His anxiety soars making his adrenaline pump through his little body to an extent he has to react. His challenging behaviour is his way of communicating fear and anxiety.

Professionals tell us to restrain him, speak to him calmly and discipline him. Would we do this to the lady screaming on a dark night? Most people would in fact rush to help her yet people seem to rush to get away from my son when he has the same feelings of life being out of control. Both scream…both are full of fear…yet we call one challenging behaviour and the other simply a means of communicating for help in a desperate situation. Perhaps we need to realise both are the same?

Like the little child we hear crying in the hospital ward who is worried, in pain, and not understanding what is going on around him so too is my son at times when we take him places he isn’t familiar with or he doesn’t want to be there. Why do we have sympathy for a little child in a hospital ward yet look in distain at my son when he cries at the supermarket aisle? 
My son has no speech. Behaviour is his way of getting his message across. How can he communicate that he did not want chicken nuggets for his dinner? One way is to throw them at me. Instead of punishing that behaviour or seeing it as challenging I prefer to see it as communication and frustration at not being able to say what he wanted. I don’t want to encourage his behaviour but until I can teach him a better way of communication I have to understand his method of ‘speech.’

When he drags me out the door and onto the street some professionals feel I should ignore him or restrain him. How then would he be able to show me the reason for his fear?


Yes I would love him to be calmer, happier and less physical at times. I do discipline and teach him as his difficulties allow but I want society to stop seeing my child as simply having challenging behaviour and see him as a child crying for help exactly like a woman on a dark night or a little boy in a hospital ward.

 
Perhaps the challenge in his behaviour is actually a challenge to society? What if the challenging behaviour is actually a cry for help that we are all ignoring?

 
Perhaps in that case we need to challenge our own thoughts and not his behaviour?