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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The day my five year old changed her class without saying a word

imageLike every mum I was terrified when my baby started full time school. Even as I dressed her in her shirt and tie I wondered yet again if mainstream was going to be the right place for her.

I had more reason than most to worry as she left that day still unable to dress herself and not yet potty trained, diagnosed with autism and selective mutism, and despite having had an extra year at nursery already, she was still one of the smallest children.

On top of all that she carries a heavy burden wherever she goes even at the tender age of five.

I often wonder if professionals realise the daily weight that siblings carry on their shoulders every day?

As well as her own diagnosis my beautiful blue eyed girl is the twin sister of a boy with even more complex needs. He has tumours, severe autism, challenging behaviour, global delay and is non verbal. She has to live with that at the fragile age of five.

How would she manage without him as his school placement was 14 miles away from hers? How would anyone know to meet her personal needs if she was unable to talk? Would her anxiety, vulnerability and tiny size make her an easy target for bullies? Would her home life stress cause issues with her learning?

I worried. And wondered.

But something changed that first week she started school. And one day her classroom assistant told me that my special, fragile, silent girl had actually changed that whole class of new starts without even saying a word.

It turns out there were two other children in her class who were also silent, but for a very different reason: they were unable to speak English. For ease of teaching my daughter was sat next to these children so the one assistant could help them all. But none of the teachers spoke Russian and everyone was still trying to work out the best way to help this group of children who due to inclusion had all been placed in the same mainstream class.

The teacher taught a lesson and the children sat on the floor. My baby girl sat and listened intently and returned to her seat. The class had been asked to draw a picture and write their names at the top of the sheet. As all the eager children started to pick up pencils and pens Naomi just sat there. She watched as the classroom assistant struggled to help the two others who had no understanding of what had been asked of them.

As another child momentarily distracted the assistant Naomi got up from her seat and walked over to the two children. She took the water holder from the middle of the desk and pulled it beside them. And silently she took each child by the hand and pointed to their own name and then pointed to the top of their paper. She then picked up a crayon and began to mark their paper every so slightly and pointed to what the others were doing.

She waited while they took in her attempts to communicate without language and slowly they began to copy down their name and begin drawing. She looked at them and smiled. And only then did she return to her own chair to try and write her own name.

The classroom assistant cried. The teacher watched.

The most unlikely child in the class had taught them all a lesson that day. The child diagnosed with a communication disorder actually showed them all how to communicate.

She still does not know one word of Russian. But living with a non verbal brother with complex needs taught her something that changed her entire class of children without her saying a word: it doesn’t need words to help people.

I still worry. But I know that in all she lives with she is somehow managing to turn ashes to beauty. And I could not be more proud of her.

This article was originally published on firefly and can be seen here: http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-without-saying-a-word

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My best friends…the beautiful flowers

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Sometimes I just don’t want to know about my daughters day at school. It seems contrary to all good parenting advice but when I asked my six-year-old whether she had any friends the other day she told me she spends her outside social time at school talking to and looking at the “beautiful flowers”. I just can’t bear to hear any more.

I know the school well. I know the names of every single child in her class. I even volunteer within the school for several hours a week. I talk to the Head on first name terms.

My daughter is not being bullied. She is just unable to play with the other children. Her social skills are limited. She takes what the other children say in a very literal way. She is vulnerable. Her interests are far different to the others of her age and ability. She is socially isolated and happy in her own world. She is surrounded by children who know and understand popular culture, current television characters and have physical skills she has yet to even attempt. She has only one current interest which not one other child in the class have even heard of. She is a little girl with autism in a world of mainstream children.

Her perception of what goes on in school is so different from the other children. Where others listen to a story she will home in on that one child who is biting their nails and tell me at home how biting your nails is not good and that child should have been told to stop. It is only when I deduce that the children were sitting on the carpet that I figure she was perhaps having a class story. Her tales of school are all about what children did to break the rules, whose name was taken down the tree today (a behavioural chart used in the class) and who touched her and when (she hates being touched!).

Try as I may she can not grasp that the world can be seen another way. Her autism prevents her from seeing things from other people’s viewpoints. And this is impacting on so much now. Even in the simplest tasks like reading. When I asked her the other night why she still had the same few words home to practice when I was confident in her ability to know those words she said, “I read them to you mummy so why do I have to read them to the teacher too?” It was a genuine question. In her mind she knows them. She knows that and I know that so why would her teacher not know the same thing? She is genuinely ‘blind’ to the fact the teacher will not know she knows them without her reading them to the teacher. The same way she thinks I know exactly what goes on in school because she does so why would I not too?

This is happening to so many children. ‘Inclusion’ is the way to go apparently. It is a very delicate balance between what is right for my child (and many like her) academically whilst balancing the child’s social and emotional wellbeing. School is like a mini real world where she will be misunderstood, become confused at things others find easy and just interpret everything in a different way.

She is the proverbial round peg in a square hole. It is about allowing her to be her, allowing her to be autistic but balancing that against her mental wellbeing and self-esteem when she seems so different. It is a very difficult balance and one that needs very careful monitoring.

So today as I walked my beautiful daughter home from school, with trepidation, I once again asked her how her day had been. “Oh mummy, wait until I tell you what happened to my friends today…” It was beautiful to hear her happy, animated and excited and talking about that elusive thing we call ‘friends’.

Has someone lost a tooth, had a birthday, had a new baby brother or sister, or even asked her to play I silently wondered.

“My friends, the beautiful flowers, opened up for the first time today and now they look even more beautiful!”

Maybe I have it all wrong. There is an area in her playground full of greenery, shrubs and flowers. But the one flower my daughter noticed was the one that was different. Because it was more beautiful, more noticeable and something very special indeed.

I think today she just told me the most beautiful thing about school I ever heard.