Why Does My Autistic Child Have No Awareness Of Danger?

Earlier today I was walking home with my autistic son. The closer we got to home the less he wanted to hold my hand so, rather reluctantly, I let him go. We were on a pathway with no other way other than straight ahead and I could see our home right ahead.

Without so much of even a glance my son stepped off the path and ran across a road at the end of the street. Thankfully I live in a quiet street but my son’s lack of danger awareness scares me.

My son is almost ten but he still can not safely cross a road himself. He has no concept of waiting at lights for the green man, no idea of road safety, no idea that sharp knives should never be touched and definitely no idea about the dangers of water. He is very typical of most children with autism. My son has no awareness of danger which puts both him and others at risk continually.

But why do so many children with autism have no awareness of danger and is there anything we can do to help them?

There are very valid and understandable reasons why autistic children (and adults because for some this will be a lifelong difficulty) struggle with danger awareness. I will break them down and explain how we can help a child or adult learn danger awareness despite having autism.

1. Rigid thinking and lack of imagination.

This isn’t lack of creative imagination but more social imagination and understanding people and events that have yet to happen or be experienced directly. How this presents in daily life for a person with autism would be a very literally and black and white thinking along the lines of ‘since I have never been hit by a moving car it is therefore impossible that this could ever happen.’ They can not ‘imagine’ that anything other than what they have experienced could happen. Even if they have came across a danger before such as water that was out of their depth a person with autism may struggle to generalise that experience. So if they were out of depth in a pool they visited on holiday once they may only link the danger of deep water to that particular place and time and not generalise that danger to all pools or beaches.

How to help: Never assume someone with autism is incapable of understanding. Use their way of thinking to help them. For example point out speed limit signs when out and talk about the fact that the faster a vehicle moves the more dangerous it can be. Linking speed to danger is a very important message that can be generalised as it is very rule based.

With water point out warning signs that are often universal too and if there are any lifebelts around talk about why those are there and how this points out danger. Never assume anything so when buying fireworks take time to show the packaging to the child or adult and let them see or read the warnings for themselves if they are able to. Repetition is often the key for anyone but especially so for someone on the spectrum who may require extra processing time.

2. Uneven developmental profiling.

What this means is that while they may, on the surface, seem to function similar to children or adults their own age there may be areas like social skills or awareness of the world around them that they struggle with. It is very true that autistic’s see and experience the world in a very different (and wonderful) way but this may mean they focus on or obsess on things to the detriment of other skills. They may have a unique and amazing ability to tell you the make and model of every car that you pass, for example, but have no idea where the local police station is should they need help. It’s not that they are not observant just that they have focussed on something else instead, like how many bricks form a pattern on the next door neighbours wall.

How to help: Give them a reason to focus on what is necessary. So if you feel it would be worthwhile them knowing where the police station is explain why and have a visual chart with a photograph so they have to place the photograph either on the map or somewhere else to help them visualise what you mean by the police station and why it’s important to know where it is. Having visuals for traffic lights or other safe places to cross and looking for these helps too. In your home allowing them to stick warning stickers on things like sockets can help remind them of potential danger too. Visuals simplify, are easier remembered and are portable. I can’t recommend them enough!

3. High sensory needs (that can either overwhelm them or lure them to the point that everything else gets forgotten.)

For my son the lure of water is so high if he sees it he wants to touch it so badly that he can not see anything else going on around him. For others their anxiety levels can rise so suddenly when they have so many sensory stimuli bombarding them at once that they just have to run or drop to the floor and they blank out everything else in order to cope. This may happen suddenly in the middle of a road if, for example, they heard a dog bark and they are scared of dogs.

How to help: If you know somewhere will be noisy then noise cancelling headphones may help. Sunglasses may help with bright lights and having fidget toys may help redirect the need for sensory feedback too. My son has a massive lure (and fixation) on elevators so I allow him that ‘fix’ before I expect him to do what I want. I use ‘first lift, then shopping’ as otherwise he would simply run to the elevator while I shopped. It’s about working with and adapting to sensory needs rather than expecting them to suddenly disappear. Be creative and, if you can, even ask your child about what things stress them or what they enjoy and see if together you can find a way of supporting them.

Of course autism is a spectrum and for every autistic person who has no awareness of danger you may have another, like my daughter, who is hyper aware and as a result makes herself ill with worry at perceived dangers that are extremely unlikely. A shark eating her up at the local public swimming pool is hardly going to happen but she will fear it anyway.

Living with someone who has limited or no danger awareness (or even hyper aware and therefore highly anxious) is difficult. It takes patience, time and a willingness to adapt and understand to help teach danger awareness, but it can be done. I know for some children (and adults) there will be extra barriers such as learning difficulties and communication difficulties and some children will never reach a level of awareness or understanding to have any grasp of danger awareness at all.

I continue to do what I can to help my son learn road safety. While he is learning though I make sure to keep him as safe as possible. The more I teach him about what I feel he needs to know to be safe the more he teaches me about how smart and wonderful his way of looking at the world is too.

It’s all about balance. Independence verses safety, teaching but being willing to learn too.

Lack of danger awareness can be terrifying but with patience and understanding it can be taught. Never underestimate an autistic person’s ability to learn.

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Coping With Worry As A Parent To Children With Complex Needs

One Sunday three months ago things changed in my family. Up until then I always worried about my non verbal severely autistic son but it was mostly around his inability to be understood, his challenging behaviour and what his future might be like. That changed on the 4th of March when I found my son face down on his bed semi conscious. He has just had a seizure.

That day he went on to have three more seizures and he slept on and off all day, not eating but at least having small amounts of fluids. He was referred to neurology though he already attended. An emergency appointment took 8 weeks but finally on 23rd April he saw the neurologist and an epilepsy nurse. She wanted an urgent MRI as Isaac has NF1 which causes tumours to grow on his nerves and a previous scan had shown Isaac had a tumour on his optic nerve.

However before we even had a date for his MRI on the 15th May I had a call from Isaac’s school to say he had arrived sleeping and had been sleeping all day and semi conscious. I immediately knew he had had another seizure. He was not home ten minutes when his eyes began rolling, his arms shaking and his mouth foaming. There’s general vague worrying for your child and then there is urgent medical worry. Once again it was confirmed by a doctor he was having some sort of ‘episodes’.

A week ago today he finally had his MRI under general anaesthetic. It’s his fourth one and I am worried. If his tumour has grown then chemotherapy is an option. If the tumour is stable we could be looking at epileptic medication. The future is unknown.

Yesterday Isaac had another episode in the park. He was violently sick this time. His sister was terrified and it was very challenging getting him safely home.

Things have changed. While I try to stay positive and keep my faith it is hard not to worry. How do you cope with worry when your child has complex needs?

I decided to reach out to some friends to ask how they cope with worry.

Charlie (whose son was having surgery the same day Isaac had his MRI) told me: ‘I try to stay busy when he’s in surgery and I remind myself of the reasons we’re doing this and the benefits rather than what might go wrong. It’s always a tense time and even though I keep my mind busy I’m physically exhausted as soon as he’s back safely with me. (www.ouralteredlife.com)

Steph (who writes at http://www.stephstwogirls.co.uk) had this to say: ‘All I can really relate to for this is when Sasha was in hospital for those 10 days three years ago. She had to have a CT scan rather than an MRI but there was other stuff to worry about, like her leaky valves… I guess I just tried not to think about it but in reality what I did was suppress it all in order to be as matter of fact about it all with her as I could be and prepare her/keep her calm.’

Lisa said ‘I don’t always realise I have been worried until after the event and then it feels like a weight has been lifted. I’m a massive over thinker but tend to have a positive outlook for the most part. Sometimes things haunt me afterwards…post trauma?’ (http://www.alifelessordinarywithautism.wordpress.com)

Cara (http://www.lylasangels.co.uk) told me: ‘I don’t worry, it’s like i go numb and just go through the motions. Before Lyla’s hip reconstruction last year a friend asked me how I felt about it and I went through my spiel about knowing it was going to be a tough recovery etc and he said yes but how do YOU feel? And i didn’t have an answer because I had no idea how I felt, I felt nothing really about her actual operation. She’s been under GA a couple of times before that for mri’s and I wasn’t worried or anxious, just numb.’

Maxine (http://www.downinfrintplease.blogspot.com) told me how running helps her cope: ‘Oh absolutely the running is my saving grace. Especially because I am always trying to fend off injury so there is such total granular focus on posture, cadence, breathing and there is no room for anything else in my thoughts for that blissful time. The outdoor space is open overhead so nothing visually pressing down on my shoulders. I am utterly free from it all when I run, and ever so much more able to cope thereafter. I also don’t pressure myself for times or even to run all the time (I take regular walk breaks) so it is only about the freedom and ‘me time’. If I don’t have it I am a wreck from trying to keep track of everything. I can’t imagine coping without it.’

Gemma (http://www.islasvoice.co.uk) uses humour to cope with her worry. ‘I am mostly numb and I hide everything with humour.Most of the time I try not to think because I know when I do my worrying consumes every bit of me.Luckily we don’t have any health stuff to worry about.Instead I wonder why everyone has discharged a severely autistic child and she has no support. I worry I’m a shit mum. I worry I should be fighting more. I worry she’s not getting everything she needs and should be getting. I worry about what will happen when I’m no longer here. Then I start laughing and joking and in my head it’s all good but I know it’s denial. It’s how I get through each day.’

Sally, who blogs at http://www.hunterslife.co.uk told me how her son helps her with her worries: ‘If I start worrying about all the things that I should be worried about – all the unknowns about the future (or lack of it) – I drown. So I try to take my cue from Pudding more and just live in the moment. Not very good at it but it’s a heck of a lot better than thinking about the alternatives.’

Jeanette finds crochet helps: ‘I use distractions here. My brain over-thinks all the time so I either distract it with a bit of crochet or some music (can’t do the latter if not on my own). The “having to concentrate on stitches or you’ll screw it up” really helps, that and being around others who “get” if you might be quiet. (Www.autismmumma.com)

Julia confessed to how anxious and worried she gets: ‘Noah had 3 anaesthetics in under 7 months. Each time I carried him to the room and held him till he was under. I buried the fear deep. Buried the worry. He needed me to be strong. I focused on him as a patient sometimes, rather than my little boy. I put my nurses head on as such as it was the only way I could cope. As he slept I’d talk to my sister in law about him. She’s also a nurse and it helped me get through it all. I still have nightmares about those months. He only has to cough and burning anxiety starts climbing up my body.’ (Www.bloomingautism.com)

Lucy (http://www.revelationsofaslummymummy.blogspot.com) is much more pragmatic about it all: ‘Bizarrely, I worry about not worrying enough. I’m a very pragmatic person, have had mammoth amounts of trauma previously. Anyway, I just cracked on, partly as a survival mechanism and partly because I knew no different. For me, that works, but I always wonder if my pragmatism perhaps leads to complacency with Brecon. He seizes every day, and it’s just life. He bites, pinches and scratches me everyday, and it’s just life. I really really hope my approach doesn’t lead to him being less efficiently cared for or me being less proactive in terms of getting him what he needs.’

Finally Anne from http://www.fainbowsaretoobeautiful.com told me: ‘I worry all the time. I find the best thing I can do is try and ‘park’ worries for a while. Realise I’m worried about something but let it go with the knowledge I’ll return to it in a while – whether that’s a few hours, days or months.’

So we all worry. My coping mechanisms right now include swimming, praying and of course writing.

One thing I do know though is that worry won’t change anything. Everyday is a fresh day and a chance to start again. And right now everyday Isaac doesn’t have a seizure is a bonus. Thankfully we have many more seizure free days than we do seizure filled ones. As for the MRI…well I will share those results as soon as we know!

And Isaac? Well he is flapping, smiling and laughing through it all. He isn’t worried about anything at all!

Why I told my Autistic Daughter There is no Santa

I love the magic of Christmas. I love the way it changes people and they think about others much more. Charities often make more money in December than the rest of the year and children sing carols and cheerful songs at school. Although it is very commercial it can be a real time for families to come together and children can have an excitement and anticipation as they look forward to a special day.

So why would I ruin all that by telling my sweet blue eyed daughter that there really is no such person as Santa?

Firstly I am not advocating this is right for every child. My daughter has autism so I chose to explain there is no such person as Santa for the following reasons:

1. Her literal thinking was causing her so much distress about Santa.

Books, TV programmes and all her friends at school talked about Santa coming down the chimney. We don’t have a chimney and no made up story of magic keys or flying through windows could change the fact that even the song talks about Santa being stuck up the chimney! She took Santa’s grotto as literal too so became very distressed and confused that Santa could be in the middle of the shopping mall, at her school party AND in the North Pole making presents all at the same time? Why did some Santa’s wear glasses and others didn’t? Why would some be tall and thin while others were short and tubby?

There is no enjoyment in the make believe of a story when your child sees everything in black and white and will not ‘play along’ just for the sake of it.

2. Her anxiety over all things Santa was stopping her sleeping.

The very thought that a stranger would enter her house while she was asleep utterly horrified her. Even though the whole story of him leaving gifts for her should have eased that anxiety she was worrying over how Santa would carry everything, wether his reindeer would get too tired or even if she would be forgotten (cheers for that one Peppa Pig!) The very mention of Santa was not exciting my child or making her suddenly want to be on the ‘nice list’, it was in fact causing her to stay awake at night worrying and making her jump every time the door bell rung.

I could not continue to see her so nervous and anxious over something that was meant to be a joyous and wonderful occasion.

3. The social expectations around Santa were all too much for her.

Ok so I know she never had to go and see Santa in his grotto anywhere but when he arrived at her school fair or party she found the whole social aspect very upsetting. Having spent years trying to get her to understand basic social rules such as we don’t talk to strangers and we certainly never sit on other people’s knees all of a sudden she watched in horror as every other child she knew broke all of these social rules just because the ‘stranger’ was dressed in a red suit. Her autism makes breaking any sort of rule horrifying and very distressing so Santa became linked with people doing very strange and confusing things indeed.

4. Her defensiveness and love for her brother was more important that any belief in Santa.

This was the crux for me and the reason I found myself sitting with my daughter on her bed while she cried begging me to tell her Santa was not real. You see my daughter has a brother who has complex needs. He can not speak and has a long list of diagnosis. Part of that means he often has very challenging behaviour for medical and developmental reasons. Her brother had just had a very difficult weekend where he had caused hundreds of pounds of damage to things in the house. He had killed her full tank of tropical fish by pouring bubble bath into the water, yet she still loved him fiercely. So when someone heard about her brother’s behaviour and happened to tell her he would be on Santa’s naughty list and would not get anything for Christmas she hated Santa more than she has ever hated anyone ever before.

So I had to tell her.

Telling my young daughter there is no such person as Santa has been the most magical thing I could have done for her. All of a sudden everything now makes sense to her. She can now reason in her mind how ‘santa’ can be in the shopping centre, the local school and somehow in the North Pole at the same time. She realised that the chimney stuff is all a story and there is no need to fear a stranger coming in her house while she is asleep. She understands why children suddenly want to sit on someone’s knee and tell them what they want for Christmas because the man in red is actually not a stranger to them at all. But most importantly of all she knows without a doubt that her brother will have gifts this year regardless of how challenging and difficult his behaviour can be.

I actually wish I had told her there is no such person as Santa earlier. Now she knows Santa is all made up she is happier and more excited about Christmas than she has ever been before.

She knows she is getting presents, she knows who buys them and she knows how we get them.

For some children with autism the magic of Christmas is actually in finally finding out Santa is not real at all.

A Day In Mainstream School For My Autistic Daughter

I am so grateful that my daughter can talk and that she shares freely with me her worries and stresses of school. This day in the life has been written with her full consent and approval to help others see how challenging mainstream can be for some children with autism and how they can perhaps ‘hold it together’ all day but explode at home. 
img_2266Morning preparation 

I wake up and come downstairs and try not to think about school too much. I get my iPad or toys and set them up just how I like it. I know I need to get dressed and eat but until things are ‘right’ I can’t think about those things. I need to do one thing at a time so please leave me alone. Let me do it my way. Constantly asking me questions is so stressful as is nagging me about time. By the time we need to leave I am already stressed and anxious.

 
In the playground

I am scanning. This is so hard to see who I need to see when everyone is dressed the same and moving around. The noise, the unpredictable movements, the bags on the ground…that’s a lot to take in for me. I only want to find my best friend and the longer it takes to find her the more I get worried. What if she is off sick? What if she has an appointment today?

IMG_2395The bell

Bells panic me. They mean I have to move somewhere quickly and I sometimes get stressed. Bells mean pressure and children running and they might push me over. I stand in my line and face forwards making sure I don’t look at anyone. The teachers shout about not talking and standing straight but I am doing those already and not sure what I should be doing differently. I turn to see if everyone else is doing what I am doing and now my class is pulled up for me facing the wrong way! I feel to blame. I feel so anxious. I feel different. 

 
Getting to class

I have to remember to put my bag one place, my packed lunch somewhere else and then hang my coat on the right peg. It can be confusing to remember all that while others are talking and moving all around me and the lights are so bright inside. Sometimes I wait until most of the others are in the class but then I worry I will get shouted at for taking too long! Sometimes I forget I have my school bag as it is on my back and I can’t see it! How can everyone else do this so quickly and easily and I can’t?

Class

I listen so much. In fact I listen so hard to everything that sometimes I can’t do my work because I need to stop and listen to everything the teacher says in case she is talking to me. I want to write neat because I don’t want a row but then they say I need to work faster and I can’t do fast and neat. It is hard to concentrate with others so close to me. They move about and talk and turn pages and it is so distracting sometimes. The walls have so much stuff on them, I can hear the tap dripping and I can hear people walking about.

I am scared to talk in case I get in trouble.

Sometimes I just can’t do the work. Yesterday they wanted us to do a senses poem about fireworks. They told me to imagine being at a bonfire with fireworks but how can you do that if you have never been to a bonfire before? I haven’t. They told me to write about what I would touch but you are not allowed to touch fireworks so I can’t write anything. They told me to write what I can smell but all I can smell right now is disgusting school dinners and I can’t even spell that. I just leave that one too.

Then the teacher gets me in trouble for not doing the task. I want to cry. The tears won’t come out.



Playtime

I don’t understand this bit. You play with toys so why call it playtime when there are no toys? Just call it ‘talk time’ or ‘stand in the playground time’ instead. I take my own toys out. Then it rains and we have to come inside and I can’t play with my toys and it is so confusing for me. I don’t like changing things. I get cold at playtime because it is hard to fasten my coat and if I take my time the people tell me to hurry up and go outside so I just can’t fasten it up now. I have one area I like to stand and play with my one friend. We play the same game every day. We like it that way. I want to play with others but I can’t because I don’t understand what they are playing. They don’t have toys. I can’t work out made up games like that.

Lunchtime

Lunchtime is horrible. We have a short time for everyone in the whole school to eat and they want us all to line up and take turns and sit at huge tables with other children I don’t know. I just want to sit down and get time to eat and not have to hear chatter chatter and smell what everyone else has that I don’t like. It is far too noisy and busy and yet no-one will open my yoghurt or peel my banana. I feel lost and confused and just want out of there. 

P.E

I hate PE so much. I never know what we are going to do. Sometimes we do balls and sometimes running and sometimes sports. I hate it all. I know I can’t do it and people laugh. How can I catch a ball when there is so much else going on in the same hall at the same time? I can’t focus. I am so cold. My legs don’t like not having trousers on. My arms miss my cardigan so much. I once fell and hurt myself in PE so I don’t run now because running is dangerous plus they said at assembly to not run in school so I don’t run. Then they tell me to run and I want to ask ‘but you said not to run in school’ but my voice won’t work. I want to cry. The tears won’t come.

I do like school. I like learning and I like doing work. I like having a desk and I really want to be star of the week. I like the other children though I don’t know if they like me. I want to tell you about things that have bothered me like being told to work quicker or not eating. I am tired from it all and now I feel safe. I want to cry. This time the tears will come so please let them. 

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I am ok. I just need to let the day at school wash away so I can rest.

School can be hard but then everyday can sometimes be hard when you have autism like me. 

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 ‘scaniexty’ I live with when my child has NF1


He was four years, three weeks and five days old when I left the hospital with a piece of paper with the words ‘neurofibromatosis type 1’ scribbled on from a doctor I had only just met.

 
The more I googled the more upset I got.

 
Would you not be anxious if your baby was diagnosed with an incurable progressive genetic condition? 

 
IMG_1043Back then my biggest worry was seizures. The cafe-au-lait marks on his little body had meant nothing at all until that day but now I read that their presence was a key marker for diagnosis. Another one we could tick was developmental delay, another large head, and still another freckles under his arms. It meant the doctor was right and as I read on about complications and tests my mind began to panic. The condition causes benign tumours to grow anywhere on the nerves of the body causing a large variety of difficulties including scoliosis, vision impairment, bone deformities, epilepsy, learning difficulties and facial deformity. 

 
As the tumours can only be seen properly by MRI my first thought was should my little brown haired boy have to have anaesthetic to have a brain and body scan?

 
This was my first taste of the form of anxiety that is common with parents whose children have NF1: SCANIETY, a form of anxiety that is associated with having scans and waiting for results. You won’t find that word in a dictionary but parents of children with NF1 understand it and struggle with it so much.

 
You may never have heard of it but we live with it none the less. 

 
Before our child ever has their first scan we still suffer with it. The ‘what-if’s’ of thinking should he/she have an MRI and if so how do we convince doctors to give them one? In some areas it is standard procedure to scan a child soon after diagnosis to have a ‘base line’ to work from but for so many others this expensive test is only given when there is a clinical need. Parental anxiety is not always recognised as a clinical need so many families find themselves fighting for a scan to find out if their child has any internal tumours and if so where.

 
My son was 7 years, six months, one week and two days old when he finally had his first MRI. From the moment I received the appointment I was anxious. It was going to be the first of many times he would require anaesthetic. How would he cope? How would I arrange care for his sibling? Would be need to stay overnight? What might they find? When will we get the results?

 

Scaniexty is scary.

 

My whole life was suddenly out of control and everything rested on the results of this scan.

 
Two weeks and five days later I had a phone call from the doctor. Could we come to the hospital the following day as a matter of urgency to discuss the results.

 
Scaniexty hit again with a vengeance. They had found something. 

 
They discovered a number of things from that first scan. My son had a serious eye condition unrelated to his NF1 which meant he had no sight in one eye. On the other eye he had something called an optic glioma which so many NF parents dread: a tumour on his optic nerve. A group of oncologists discussed my child’s case and decided, for now, no treatment was needed. We were sent home.

 
Scanxiety never left me though.

 
In six months time we would be back for another scan. My mind could not ignore that. He had a scan, they found a tumour, next time there could be more.

 
What should have been a six month wait until the next one turned into an agonising ten months before we finally had our next scan on 3rd March this year. The scaniexty of waiting for that second scan was awful. The day of the scan was awful. Waiting on the results is awful.

 
When your child has NF1 scaniexty never leaves you. 

 
This time the results showed the original tumour was stable but he also has brain lesions, one of which is large, and these are a direct result of his NF1 too.

 
We live with the constant worry he may one day need chemotherapy. We live with the worry he could go blind due to his optic glioma since he has no sight in his other eye at all. We live with the worry they may one day they could find a tumour that keeps growing.

 
I live with anxiety as a mum to a child with NF1. That anxiety is deeply connected to the fact my son needs ongoing scans for the rest of his life.

 
There is no cure for NF1 and there is no cure for the scaniexty it brings either.

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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 late 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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