Source: The reason I don’t like to eat
My husband and I were having cross words again. Extreme lack of sleep, hardly getting time to eat and a house that looks like a toy shop was burgled, added to constantly demanding children and it was no wonder we were fractious.
Summer holidays are so hard.
In fact part of me actually hates them.
“We need a break”
“I just want the house to be clean and some time alone!”
“I hate the summer holidays”
They heard us.
I just unwittingly and unfortunately stabbed my child in the heart with my words.
We made ourselves a coffee and regrouped. Stress affects everyone and this summer has been particular stressful for my family. My autistic son has really struggled to adapt to change but once he realised there was no school he assumed every single day would be simply about what he wanted. When that does not happen he screams for hours (he has complex needs and is non verbal so none of this is his fault)
I made the kids (yet another) snack and we all calmed down.
Then a little tender voice broke the silence:
“Mum, it’s ok. I will go back to school and just stay there. Please don’t collect me at home time because I want you to be happy”
And then she cried. Deep sadness overtook her and I held her as the pain of my earlier careless words wrecked havoc in her mind and her heart.
I do hate the school holidays. I hate them even more now.
Parents, like all adults, need to be able to express their emotions. They get stressed and tired and we really are just humans at the end of the day.
But I don’t hate my children. In fact I love them and enjoy being with them more than anything else.
What I hate about the holidays is this:
I hate that holiday companies are allowed to ridiculously inflate their prices in school holidays preventing so many from getting away.
I hate that family attractions cost so much that they are out of reach for many.
I hate that everyday tasks like shopping are so much more stressful because children want to do fun things and get bored at everyday mundanity.
I hate that my children see parts of me they shouldn’t because the constant 24/7 means I can’t rest or eat without them.
I hate how isolated and alone my family becomes due to having a child with complex needs.
But despite all this I will never ever say again in front of my child that I hate the summer holidays.
She does not need to hear this.
Her mental health is of far greater value than my need to vent.
Children hear us. What are they hearing when we say we hate summer holidays? They are hearing we hate spending time with them. They hear they are not wanted and they are an inconvenience to mum and dad. They hear that they are the cause of stress. They hear that they are making their parents sad. They hear we hate them.
So from today onwards I may vent in adult only places such as social media, I may text privately a friend to moan, I may even write my stress down BUT I will no longer utter those words again when my child can hear.
I love her way too much for that.
She is the reason I will never say again publicly that I hate summer holidays, even though I do.
Something to think about perhaps?
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.
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.
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!
This article first appeared here
At first it is lovely to not have to cope with the school run or never ending packed lunches to make. It is a novelty to be able to put the TV on and not worry that the kids will be late or that they won’t eat breakfast. I am delighted to not have to wash and iron uniforms (who am I kidding I stopped ironing them by the end of September!) and find matching socks before 8:15am.
These are all great things to get a break from and I do not miss carrying my screaming child out to his taxi daily. But I would be lying if I said as a special needs mum that summer holidays were all wonderful. They are not. I find so many things stressful about having my disabled children with me all the time. I am not alone either.
Here are the top ten summer stresses faced by so many special needs parents today:
1. Lack of changing facilities.
I want to take my children to soft play, parks, swimming, museums and day trips. The problem is I have two children who still need nappies changed and both are well over the age of being able to access ‘baby change’ facilities. I need changing places toilets and these are so hard to find. For so many families this lack of toilets prevents them accessing places all year round but it is magnified during summer when children want to be out and about in lovely weather and families want to go out together making memories. None of my friends whose children have no special needs seem to even think about access to bathrooms and it upsets me that such a basic necessity for special needs families is so hard to find.
2. Lack of disabled trolleys in shops.
My son has profound autism and other complex needs. I can dream that one day he will walk around holding my hand helping me but it is a pipe dream. In reality he will smash things, scream, run away from me or wander out the store completely. I need to shop even when my children are not in school. Although online shopping is handy there are days I just need to be able to pick up bread and milk but something so simple is so difficult, and often impossible, if a store does not have a suitable disabled trolley for my son. I have lost count how many shops I have had to walk out before I bought anything because there are no basic facilities for my son. In 2017 this really should not be the case.
3. Lack of playing facilities in parks.
My local park is wonderful. It has a swing seat my son can use and a wheelchair accessible roundabout. Sadly this is NOT the norm and if my son is in his wheelchair I often find myself unable to even access parks due to cattle grids and tiny gates and that is before we even get to see if there is any equipment he is even able to use. Parks should be inclusive not just for the mainstream elite. The stress of not knowing your child can access something as simple as a swing in a play park is common for so many special needs families.
Yes even in 2017 there are shops, play centres, public buildings and restaurants that I still can not enter as my son is unable to climb stairs. Many shops also have displays so close together manoeuvring a wheelchair around the shop is impossible. I am denied access to places my son should be able to visit and I should be able to enter due to inadequate disabled access. The United Kingdom is far from disability friendly sadly.
I am delighted that more and more places are putting on quiet hours and autism friendly times. However as wonderful and inclusive as this sounds they are often at times that are so difficult for my family to access. Early Sunday mornings for example are of no use to my family as we attend church and late at night is no use when I have young children who need routine. Instead it would be better to have a quiet day or autism friendly day once a week that enabled many more to access and enjoy places that otherwise exclude so many.
6. Lack of respite.
Being nurse, therapist, attending appointments and getting very little sleep is draining. The majority of special needs families have no summer respite and little support through the long weeks of summer. This causes resentment for siblings who fall to the wayside and can put pressure on relationships and cause many carers to struggle with their mental health. For special needs families school offers necessary respite which they can not access all summer long. It makes for a very long summer indeed.
7. Inability to use household items due to sensory issues.
I dare you to use the hoover in my house over summer when the kids are home! Or the hairdryer or washing machine. These are items I use daily when my kids are at school but using them in summer causes the kids to scream and lash out in real pain. Parents of children with sensory processing disorder walk on egg shells all summer just trying to keep their house respectable without triggering continuous meltdowns.
8. Lack of sleep.
I can cope when my son does an ‘all nighter’ when he has school as I can rest or nap while he is out. When your child or children need 24 hour care and you get very little sleep that has to take its toll eventually. By week three of the holidays I have no idea of the day of the week or even my name as sleep deprivation kicks in big time.
9. Lack of support.
Therapists vanish in the summer, as do health professionals and social workers! While I fully respect everyone needs a holiday it can be so disheartening and stressful as a parent to be left without any support all summer long. It is also detrimental to the children who require continuity and routine. Living with a non verbal frustrated 8 year old for seven weeks with no speech therapists is stressful!
Places are noisy, busy, expensive (carers allowance is a pittance!), and the general public can be ‘challenging’, making trips out of the house so difficult. Add to that the stress many families face trying to get their special needs child off of technology and even into a garden and you have some idea how stressful summer can be. For thousands of families this leads them to be isolated in their own home, forgotten and abandoned due to having a disabled child.
With time, money and planning so many of these stressors could be overcome. A little respite, businesses and community groups installing changing places toilets and more shops purchasing firefly trolleys suitable for disabled children and life could be so much different.
Have a think. What could you do to make summer easier for a family with a special needs child?
This article first appeared here
What do you think of when you think of imagination? Do you think of children making up games, people writing fiction stories, or perhaps role play? It is true that all of these, and so much more, require imagination yet imagination is so much more than just forming new ideas and being creative.
Many autistic children (and adults) struggle with a special type of imagination called social imagination.
Firstly let me explain what this is NOT:
1. It is NOT the ability to be creative.
In fact many people with autism are highly gifted artists or musicians and have unique and highly talented ways of presenting their ability.
If your child is diagnosed with autism it does NOT mean they will not be good at drawing, or be able to express themselves in creative ways.
2. It is NOT a lack of ability to play with toys or act out made up scenarios.
Children with autism can play at feeding a doll, or play with trains or bring plastic figures to life. Autism may mean their play is more repetitive or scripted from TV programmes but lack of social imagination in itself does not mean your child will never play with a toy phone or dress as a nurse.
3. It is NOT going to stop your child writing stories they have made up, telling lies or building unique structures out of lego bricks.
So now we know what social imagination IS’NT let’s talk about what it IS:
Social imagination allows us to understand and predict the behaviour of other people. It also helps us to make sense of abstract ideas, and to imagine situations outside our immediate daily routine.
Lack of social imagination is why so many people with autism struggle with change: they just can not imagine things happening any other way.
Social imagination is the ability to watch others and work out their intentions, their thoughts and interpret what they may do next. This is why children with autism (and adults) find social situations such a challenge at times. They struggle to put themselves inside another persons head and therefore they prefer to watch rather than join in.
Both of my children have autism. On their own they can entertain themselves, make up their own games and even play structured games with rules very well. The difficulty lies when they are expected to play alongside other children because people are very unpredictable and may play in an entirely different way to what my child is used to. That ability to adapt and understand others is known as lack of social imagination.
Lack of social imagination means they can not foresee what might happen next. This is why those with autism can not see danger: they simply can not imagine anything happening that has never happened before. They have never drowned before so how could that happen? They have never been knocked over by a car so how could that happen? Even if they have had some danger happen like an injury that only happened in one place in one particular chain of events so to them it will not ever happen again. This makes lack of social imagining dangerous.
Lack of social imagining means they struggle to see the future. They can not imagine ever moving to a different school or a new house or having a different carer. They can not imagine their bedroom painted a different colour or someone else moving into the family. This is why it is so important to help children with autism (and adults) when anything changes.
Lack of social imagining means they need support to face new situations. Going to new places, meeting new people, even road diversions all require our brain to be adaptable and without the ability to ‘imagine’ that everything will work itself out you can see why so many people with autism will struggle.
Lack of social imagination is also why my daughter has no concept when others are bored listening to her talk on and on about her latest fixation. Not only can she not imagine that everyone else would love Thomas Tank Engine as much as she does but she also can not imagine that you would want to do something else if she doesn’t. She doesn’t want to cook dinner so why should I? For my non verbal son he sees no reason why he can not go and watch lifts at 3am since he can not imagine that the rest of the world is sleeping.
Lack of social imagination is why my daughter is so bound up with anxiety. It is why she has so many difficulties trying new foods (unable to imagine if they will taste good or not) and why she has significant challenges socially.
Yet she makes a great pirate looking out to sea in the playground as you can see from the photo. She had great fun telling me about rescuing people from the nearby houses and looking for treasure under the swings. She has plenty imagination it’s just social imagining she struggles with. People may think they are the same but they are not.
I have just outraged and angered an entire community by saying that. Before you pin me to your dart board and vilify me on social media please spare me a few minutes of your time to hear me out first.
I adore my children. They are my heartbeat, my reason for being, my everything. I think they are the most beautiful human beings ever created, they are talented, hilarious, kind, amazing and every single day they make me proud.
They also both suffer from autism. I use ‘suffer’ deliberately.
Dictionary.com defines ‘suffer’ as:
verb (used without object)
1.to undergo or feel pain or distress:
2.to sustain injury, disadvantage, or loss:
3.to undergo a penalty, as of death:
4.to endure pain, disability, death, etc.,patiently or willingly
So sticking with the dictionary meaning let’s go through this. Not all apply to autism but here are the ones that do for my children:
Number one to undergo pain or distress. My children both undergo this due to their autism but in very different ways. My daughter feels very real pain when she experiences sensory overload and certain smells make her physically sick. Loud noise hurts her ears and someone walking past her in school is like them sticking needles in her. Her pain is real. Not understanding social situations distresses her to the point she has panic attacks and cries. My non verbal son experiences distress and pain daily as a direct result of his autism. The simplest of things changing or even a door open anywhere in our full street and he will self harm and scream for hours. He just can not cope and has no means to communicate why. That to me is pain and distress not just for him but for us too.
Number two: to sustain injury, disadvantage or loss.
Loss of ability to speak both consistently for my non verbal son and in certain situation for my daughter due to extreme anxiety; that is loss and disadvantage. To be excluded from social events because you are so limited in your interests or find social situations so complex and difficult is loss and disadvantage. To have the level of learning difficulty my son has where at 8 he can not write one letter or number nor can he read is a huge disadvantage in life. To still be wearing nappies at 8 is a disadvantage and loss. To not be able to dress yourself is disadvantage and loss. So yes they suffer from autism according to this definition too.
Number four: to endure pain or disability.
I see autism as a very real disability for both my children. They are unable to do what others in society take for granted. My son will require 24 hour care all of his life. My daughter has mental health difficulties which will require ongoing monitoring for most of her life. Socially they will both require support too. Their autism is life long and they require a much higher level of care than other children their age do. Do they need to ‘endure’? Yes I believe they do. A school day is huge for them both to cope with. The demands placed on them, the sensory difficulties faced and the continuous transition from outside to inside and different rooms puts massive stress on them both and it takes huge strength for them to get through every day. Autism causes them mental and physical pain at times in ways many of us don’t quite understand.
My children live in a world that is different to them and confusing. Their communication difficulties and social struggles make everyday a challenge. They struggle, they endure and they face difficulties. They are suffering.
It is apparently not politically correct to say anyone suffers from anything. The negative connotations associated with the word suffer make some people very angry. I am not dismissing that at all. Yet I am left with a big concern: If we continue to only allow people to use positive and politely correct language when referring to autism like it is ‘just another way to see the world‘, or ‘it is a gift‘, or ‘it is a difference to embrace‘ then are we doing an injustice to those who are in fact struggling daily, in pain mentally or physically as a result of their autism, and suffering as a result of inflexibility, social confusion and misunderstood repetitive movements like flapping?
My children need support. They need people to help them through their struggles. If that means I come across as negative saying they suffer from autism then so be it. Sometimes I have no choice but to break the taboo in order to get the support my children desperately need.
If by stating they are suffering it causes people to want to help, or makes them think about how they treat them then I feel it is justified.
I tell my children everyday how wonderful they are, how precious they are, how loved they are. I celebrate their achievements and accept them but I refuse to sugar coat their struggles and I want to honour them both for the way they cope in all the ways they truly suffer as a result of their autism.
They suffer from autism and I think other people need to understand that.
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!
Every 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.
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