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. 

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The Life Of An Autism Sibling


In the back hall of a church she watched as her brother climbed a toddler slide. As he sat at the top of the slide flapping he lost his balance and fell off. He was shocked and shaken as he laid there confused and hurt.

While the adults checked him over his sister ran around the room looking for all his favourite teddies, then sat beside him stroking his hair and whispered: You are ok. Don’t be sad. You are ok.
She is smaller than her brother, weaker than him physically, and much more timid in nature.
Yet she is strong. 

She is the sister of a child with autism and that is something very special. 
She copes with screaming and has learnt to be a peace keeper.

She copes with a brother who is controlling and she has learnt to compromise.

She copes with a sibling who rarely sleeps and she has learnt to rest as and when she can.

She copes with the unfairness when her sibling does not understand rules and she has learnt patience and maturity beyond her years.

She copes with aggression and responds with peace.

She copes with his iPad on full volume and responds by showing him how to plug in earphones.

She copes with people staring at him and she smiles at them and puts her arm around her brother in support.


She copes with getting less attention than she deserves and has learnt to play herself to cope.

She instinctively knows and understands now when he is experiencing sensory overload and leads him to a quieter place.

She opens snacks for him because she knows he does not have the co-ordination to do it himself.

She has learnt that he can not join in her games and copes with that disappointment better than many adults would.

She fights her brothers corner.
She keeps him safe.

She changes the TV channel when he screams at a show he does not like.

She even makes hand dryers work for him because she knows how much he likes them.

The life of an autism sibling is not easy. They are often over looked and expected to cope. They miss out on so much because of the needs of their sibling and have to adjust to family life dominated by an invisible condition. A lot is expected of them beyond what other kids deal with.

It takes strength to cope when your brother screams daily. It takes strength to understand certain toys can not be bought because they pose a danger to your sibling. It takes strength and maturity to realise and accept that having friends around to play may be more difficult than it is for others.

To watch your brother or sister struggle with something you do easily and not boast about this, to stand up for your sibling when others mock them, to cope with public meltdowns and not be embarrassed: you are amazing! 
Let’s hear it for the autism siblings! You all deserve the lime light for once!

The Blind Bag Secret That Has Saved My Sanity


My daughter is a collector. She collects all sorts of things but her most favourite things to collect are small, inexpensive toys she can put in her pocket and carry around. She loves little animals, little cars, small trains, little figures of all sorts and superheroes…she is what is known as blind bag heaven! 

She begs me constantly for these little bags you find in toy shops, corner shops, newsagents and at the cash desks at supermarkets. She loves the surprise, the fact you can collect them all and the magic of opening those little bags. 

Like so many children around the world she even spends hours watching others opening and ticking off little toys on collectors lists. There is just something special about these surprise bags that seems to bring her great delight….

Until that is she gets a duplicate! 

Then she gets most upset, feels let down and begs for yet another bag to try again. 

I had so many discarded toys, so much disappointment and so much money wasted that I was so close to saying she could never have one of those crazy bags ever again. 

Seriously I was finding myself in shops feeling those things trying to figure out if I could guess which one was inside! The more she would collect the harder it got and I would shake those bags, try peeking inside and be so mad at myself if I purchased a bag only to find yet another duplicate to be forgotten about and tossed to the bottom of the toy box. 

My daughter has autism and so swapping her duplicates was never an option as her friends were not interested in the same things she was. So the pile of excess figures, trains and cars just kept growing. She never ever asked for anything else and she delighted herself in lining up her treasures eagerly waiting on the last few to tick off. It became an obsessions for her. 

Then one day as I stood in a shop pulling bags off to feel and shake I could hear footsteps coming towards me. A hand tapped me on the shoulder and politely asked me if she could help me. I was sweating but explained how my daughter loves blind bags and was looking for a certain character and I was hoping to be able to figure out which one was in the bag for her. 

And that was when I was let into the secret that saved my sanity.

It IS possible to know what is inside those little bags and here is how:

The bags are coded. Seriously every one of those bags whether it is Thomas The Tank Engine or My Litrle Pony or Imaginext figures…every bag has a code hidden somewhere that prevents you from purchasing endless duplicates. You just need to know where to look! 

 
I walked out that shop like I had just been given a million dollars! 

I got home and did a quick google and low and behold I may not be the first person to have unlocked this mystery but it still appears so many others have no idea! 

So I wanted to share, not to be a spoil sport and take away any of the hidden surprise element to these bags but simply to let others know and give them an option to check if they wish.

My daughter has autism and duplicates to her have caused so many meltdowns that I would hate others to be going through the same when there is a secret to save parents sanity. 

You may wish to read this and keep the secret to yourself or you may feel this is something that could help a friend. What you do with this information is up to you. 

For me this blind bag secret has saved my sanity so much I HAD to share incase someone else was fed up with the tears and tantrums of duplicates too.

They do say these things are a numbers game..they were right after all! 

Professional Speak Translated For The New Autism Parent 


Picture this: you have some concerns about your child’s development. Perhaps he or she is not speaking much, not giving eye contact, ignoring or over familiar with others or has some behaviours that seem a little repetitive. You decide to seek some professional advice. 

You have now entered the world of ‘professional speak’ where all sorts of professionals will say thing to you that actually have a meaning you may never realise. 
For those just starting out on the autism journey here are some things you may hear a therapist or a doctor say about your child with autism and here is what they might really mean. 

  •  “Let’s see how he goes shall we.” 

What that really means is we reckon you are exaggerating a few things and all will be fine. 

Remember: if your child has autism they will not grow out of it so don’t let this put you off!

  • Shall we discuss this another day?”

Which really means they are hoping to avoid the issue and hope you don’t notice.

Remember: take notes and remind them at your next visit you have something that needs discussing!

  • He/she is very complex.”

Which means that they really are not sure what to do with your child and hoping someone else will take over. 

Remember: if a doctor or therapist says this make sure they are working alongside everyone else dealing with your child so that this is not used as a cop-out. 

  • I’ll see you back in clinic in six months time.”

That translates to they have ticked the box to say they have seen you and they hope whatever the issues were that they will have disappeared by time you get seen again.

Remember: make a note somewhere on when you were seen and start chasing the next appointment in a few months time. Write down your concerns and make sure you are being heard.

  •  “What do you want us to do for you?”

This means they are trying to manage and limit your expectations from day 1 and they are also checking IF they can actually help at all. 

Remember: not every service is right for your child but if you feel a service CAN help push them to do so. Sadly they are often under pressure not to take every case on that is referred. 

  • The next step is for you to attend this course before I can do anything else.

Invariably that will be some sort of parenting course. Sadly it is still endemic to blame the parents before any real issues with the child are even looked at. 

Remember: it is not mandatory to attend any parenting course but often doing them can help and it also shows professionals you are engaging with them. As annoying and insulting as they are at least you can prove you are not to blame. 

  • I was speaking to my colleague about this.”

What this means is they feel they are out of their depth and may be looking to blame a colleague for some new idea or treatment rather than taking responsibility themselves.

Remember: this is YOUR child and if you feel uncomfortable with any professional talking to anyone, be that colleagues or other agencies, then make sure they know! Data protection means you have a right to privacy and confidentiality at all times. 

  • “I was planning to do such and such a test and speak to so and so in due course and get back to you at a later date.”

What this really means is they are delaying diagnosis in the hope at least one other person will state they have not seen signs in your child.

Remember: While basic tests like eye tests and hearing tests are useful and gathering information is wisdom, you can not be left indefinitely in limbo land for too long. It is important if your child does have autism that they get diagnosed and helped as soon as possible. Insist on calling back in a months time to ensure you are not being forgotten. 

  • Have you tried….(fill in the blanks with anything from hypnotherapy, hydrotherapy, ABA, a certain support group in the area, melatonin for sleep and so on)?”

This really means they are hoping you will say ‘ah yes we did this and such a thing is now no longer an issue’ so that they can discharge you. 

Remember: just because something works for others does not mean it will work for your child too. There is no harm is trying a change of diet (providing not harmful) or different forms of therapy, but there is no one size fits all in life and your child may need something totally different. 

  • That’s just all part of autism.”

Ridiculously some professionals seem to think once your child has autism that every other niggle or health concern they have is therefore related even if that is a rash, a headache or as crazy as tooth ache!

Remember: while autism is a complex neurological and developmental condition your child still has a right to treatment for bowel issues, pain and any other medical issues. Do not be fobbed off with the autism card! 

  • You look like you could do with some respite!


This translates as you could really do with brushing your hair and the matchsticks holding your eyes open are rather obvious today.

Remember: if they truly think this make sure they do something about it! Insist they pass that comment on to the right people or explain the process of getting respite!
Finally I will end with this one because of all the comments professionals give me this one angers me the most: ‘

  • We find working with the teachers is a better use of our time that working directly with your child.

Really? What that means is they place way more value on a teacher (who does not have autism) than they do on your child who desperately needs help! 

Remember: while few of us actually enjoy challenging professionals we have to fight for our children. Do not allow system failures to fail your child. 
Whatever therapists and doctors tell you always remember you are the parent. You were the one to raise concerns and you are the one who knows your child best. Make sure everyone is working with you and for you. 
Also note you will sometimes hear those wonderful words we all love so much: ‘

  • “I believe you!”

I hope more of us hear that one than the others! 

Why I will no longer say I hate summer holidays…even though I do!


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. 

 
Silence.

 
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?

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