When There Is No School That Is Right For Your Child

As I fill in forms and prepare for my son’s first transition hour at his new high school I find myself being thankful that he has very complex and profound needs. Why? Well because this meant he easily secured a place in a local ‘Additional Support Needs’ high school (known to most as a special needs secondary school).

Next year will be different. His sister has no learning disability or difficulties, but she is autistic and won’t cope in mainstream high school. Having looked at different options it lead me to draw this simple drawing:

Where do children like my daughter go?

Far too often there just isn’t a school that’s right for your child.

This is the story of a child called Miss S written by her mother. This is the story of a child, who due to her autism, no longer fitted into the mould of mainstream school and despite having no learning difficulties she did manage to secure a place (eventually) in a special needs school but this didn’t work either.

Many will say ‘just home school’ but for many children this isn’t the best option. They want to go to school but there just isn’t a school that’s right for them.
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Well, you’ve missed out on a pretty and symbolic sunset” Miss S texted me earlier.

I was out, picking up some fries. For her, to cheer her up. Yes, I’m aware this could be classed as comfort eating, we’ve discussed it… that’s not what this post is about today.

I asked Miss S why the sunset was symbolic. Her reply, via text, was:

“So, the sunset was pretty orange, and while the sun was still visible (from my room), it shone an orange light. When I wasn’t looking at it, it felt kinda like symbolism in the sense that the light at the end of my very dark tunnel was behind me and I couldn’t see it, and when I did see it, it was already gone.”

I asked if I could share her words here, she replied:

Sure, so long as you say AND THAT IS DEPRESSION FOR YOU, KIDS!”

It’s been a tough day, emotionally. Lots of them are, of late. And today’s upset was despite making it outside for a walk with Miss S, something she’s not done for a very long time now. I should have been over the moon. But the reason we went out was tough….

Last week, an advert popped up on Miss S’s iPad. It was for the local private girls’ school, a picture depicting five girls linking arms and laughing, in their uniform. Miss S sent it to me and said she wanted to talk about it; she had searched it up on the map, seen it was fairly close to our house and so decided she wanted to try it there.

Knowing that the private, academic school would not be suitable for our girl, I tried to steer her thoughts away from it. On the map we saw an even closer school to our house, ten minutes walk away (discounting the closest her sister attends, which takes only a minute to walk to) and so Miss S switched her attention to that. I didn’t want to crush her hopes so I promised her I would speak to the school. Knowing full well that it was highly unlikely they would be interested in being as flexible as they would need to be, I called anyway, but I couldn’t get past the gatekeeper receptionist who told me I should put it all in writing.

Today we took a walk to this mainstream secondary, so that Miss S could get a feeling for where it was and what it looked like. On the way there she was asking me lots of questions, about the uniform, about whether phones were allowed in school, about what subjects she would have to learn. She talked about how she would like to walk to school herself and would listen to her music en route to keep herself calm. She chatted about how she wanted to walk unless it was cold or raining. She spoke at length about lunchtimes, wondering what food would be served and whether she’d get her beloved potatoes which were pretty much the only things she’d only eaten for lunch at her previous two schools. She talked about how the school would be full of ‘normal’ children and so she might stand out for being weird.

We came home, and she asked to buy a new game for the computer – called School Simulator. She acknowledged with a wry smile that it showed how desperate she was, to want to pay £15 to be able to create her own school. Sadly, the game proved too difficult for her to understand, and it just magnified all the feelings of failure which she has. She took herself upstairs to bed, put her face mask on and her soothing piano music on the iPad, and said she wanted to sleep forever until there was any news about a school for her. She then slept for 2 hours in the middle of the day, when she wasn’t even particularly tired. Just upset, emotional, and ‘bored’ of life because she can’t see the point. As she said to me on our walk, she just needs to know something about the future, to have a plan. It’s not a lot to ask, is it?

Of course there’s no point in me putting anything in writing to that mainstream school we walked to today, despite having reams of ‘evidence’ of needs in my SEND parent files. My ideas of what could help are outside of the box, off the wall, not in keeping with the school system. Our girl would be seen as a burden, an issue, unwanted extra work. Mentally, and financially in terms of support and paperwork. Because it all comes down to the cost, and the budgets at the end of the day.

But our girl wants to be at school. She wants to be part of a community. To feel wanted, to have friends. So much so, that she is prepared to try anything (apart from wearing trousers as part of a school uniform apparently). But that doesn’t mean she would be capable of bending to the system, of becoming that round peg needed to fit in the round hole. And instead of being supported to find an alternative for her, I am left to be the one to break her heart.

It shouldn’t be this difficult, should it? All it would take is a handful of individuals who really care, to come up with some activities and solutions. A chance for Sasha to join in with small group work, music or swimming lessons, anything, to keep her going and think that there is a point in life. She wouldn’t be able to access busy corridors or playgrounds, or the lunch canteen without extra support, but surely the fact that she wants to try should be acknowledged and encouraged?

She is being let down, massively. I’m trying to keep her afloat. Who knows where this will end?


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Miss S is being badly let down by an education system that only seems to allow those with learning disabilities, like my son, to receive specialist provision when so many others, especially those with autism, really need a viable alternative to mainstream too. I’m terrified my own daughter is going to be one of those children who are too clever for special needs school but too autistic to fit in mainstream. Where do children like her and Miss S go?

What do you do when neither mainstream nor special needs school are right for your child?

We need wider provision in the education system so there are no more children, like Miss S, left at home desperate to go to school but with no suitable school to go to.

With special thanks to Steph Curtis from Steph’s Two Girls who writes a wonderful blog about autism and pathological demand avoidance. I would encourage you to read her blog and check out her Facebook page too.

The Difference Between ‘getting better at coping’ and ‘growing out of Autism’

My daughter is now more than half way through her primary school years and in a few short years she will face the transition to high school. She has come so far since the day she was diagnosed with autism exactly a week before her fifth birthday.

She reads fluently.

She writes beautifully.

She has a friend.

She talks in long sentences and can have a full conversation with me.

She is ‘doing well’ at school.

She no longer flaps in public, hides under tables or cries when people look at her.

She’s growing, maturing and slowly getting independent. So much so that an acquaintance recently asked me if she still had autism.

I wasn’t sure wether I should laugh or cry.

For anyone who is in any doubt: autism is a life long condition. You don’t ‘grow out of autism’ but you can learn to adapt and cope better. It is the latter that my daughter is mastering.

She has realised that others laugh and mock you when you flap in the school dinner hall so she soon stopped doing it. That doesn’t mean she doesn’t want to or need to she just knows it’s not the acceptable thing to do.

She has learned social chit chat enough that when people she is familiar with make small talk she no longer comes across as confused or ignorant. We have spent years working through different social scenarios to help her learn coping strategies. We have spent months on the same social story until she could reply with a simple ‘I’m good thanks’ to the question ‘how are you?’ As long as conversations continue as she has practiced she appears to be a fluent communicator.

She has learnt that not everyone loves to hear non stop information on the same subject. She has learnt that not everyone needs the same strict order of events as she does and that other children enjoy the change from routine even if she doesn’t. She understands what is expected of her and does her best to conform.

She hasn’t been cured of autism in any way, she has just learnt that to get by in life she needs to mimic non autistic people in order to survive.

As a society we are telling autistic people, wether we agree or not, that being non autistic is the best way to be. We start at a young age by placing as many autistic students, like my daughter, in mainstream school in the hope that other students will ‘bring them on’ and perhaps even ‘cure’ them. We may never actually say as much but we expect THEM to change and not the other way round. If a child is unable to hide their autism, mask their sensory issues, or cope with the demands of everyday school life we deem them a problem and educate them elsewhere like they have somehow failed.

My daughter has learnt to do what society expects of her. She mirrors her non autistic classmates in order to survive and so to onlookers it can easily be mistaken that she no longer has autism just because they can’t see her autistic traits any more.

You can not grow out of autism. It doesn’t happen. My daughter will one day be an autistic adult. She is proud of her autism. She knows she is autistic and she isn’t ashamed. Yet in school she could easily be mistaken as the same as her peers.

It’s called camouflage autism and it’s extremely common in school children and adults.

They can look, act and talk like non autistic people but that doesn’t change the fact they are autistic.

The difference therefore between getting better at coping and growing out of autism is that the first is extremely common whilst the second is in fact impossible.

Just because I have spent years helping my child to cope in a world that is foreign to her does not mean she is cured.

Just because my child can make it through a day at school, or an adult can make it through a day at work does not mean they are not autistic.

They are autistic people all around you, living in your street, at your work, in the shopping centres and driving on the roads who have all developed ways to cope and live in a world that is different for them. They may appear the same but they aren’t. Camouflage autism is all around us, if only we knew.

Think of it this way. If an Australian came to live and work in the UK and over time lost their accent, their Australian ways of doing things and blended into UK culture would we no longer say they were Australian? Of course not.

So why do we think because an autistic child or adult is learning to cope better that they are suddenly no longer autistic?

Maybe if people really got to know others and embraced autism more we would see that while at times it is admirable to want to be like others it is also wonderful to be your true self too: autistic or not.

The One Thing I Want in Life for My Autistic Son

My son has lots of difficulties in life. He can not talk, he can not read, he can not write. He struggles to join in anything others are doing, preferring instead to flap at lift doors opening and closing or turning hand dryers on and off repeatedly. There is a long list of things I would love him to be able to do including communicate his needs, be more independent, understand what people are saying to him or even use cutlery.

Yet two days ago a photograph sent home in his school bag made me suddenly realise that all I really want for my son is one thing: to be included.

My son attends a school for children with severe and complex needs. Many of his ‘friends’ are wheelchair users, or non verbal or perhaps require to be fed differently via a tube. Some have behaviour challenges and others have genetic conditions or learning delays, but they all have unique and wonderful personalities. The small class sizes and increased staffing are necessary for all of the children, most, if not all, of whom will require support all of their lives.

However his school building is modern and custom built. One of the most remarkable things about the building is that it is shared with another school. This is a new and innovative idea where I live but one that seems to have huge benefits not just for complex needs schools and mainstreams but for schools of different faiths too. The building announces proudly to the community that we are all one and we are all the same even if we appear to others as different.

I have to be honest and say I would rather my son did not have some of the physical and cognitive challenges he faces daily. I wish he could speak, I wish he could read and write not because it would make me feel proud as a parent, but more so because it would benefit him so much. I wish he could attend mainstream school like his sister does because he would be known in the community and have friends locally he could play with, not because I have any issues at all with the challenges he faces. He is loved immensely for who he is but it would be beautiful if he was with his peers much more rather than separated and educated so far from home.

So getting the photograph sent home with him spoke so much to me. The photograph shows my son with children from a mainstream school playing a game. He is being supported not by specialist trained teachers or support staff but by another child. He is being included.

That is what I want above anything else for my son. I want him included as equal in society.

I don’t want him pitied.

I don’t want him ignored.

I don’t want him excluded.

I don’t want him mocked.

He has had enough of those things already.

Yes there are things my child can’t do, but there are things every one of us can’t do either!

The children in the photograph had no need to know the list of diagnosis my son has. They didn’t need training in the latest model of therapy for those with autism or have to have hours of training in physical therapy. They didn’t see a child who can not speak or who is unable to read. They saw a child called Isaac and did what they could to have him join in to the best of his ability.

See my child. See him for who he is and not all the things he can not do. See him as a child who is worthy just as every other child is. See him as a peer.

Please let this photograph help change society. Please let this be the generation who sees people as equal.

Please give me hope that the one thing I want for my autistic son may actually happen one day.

Maybe you can’t include MY son but you won’t have to look far for a child who may also have autism, or a genetic condition or who struggles. Send them that party invite. Encourage them to join in the game. Offer to push them on the swing at the park.

Every act of inclusion is an act of love. I promise you it is worth it. I promise you everyone will gain from this.

What are schools really saying when they reward 100% attendance? 

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I sat at the back of the hall at my daughter’s school end of year assembly smiling as the choir sang, the oldest class performed and finally the awards were given out. As a parent it is such a proud moment to hear your child’s name called out and their achievements recognised. Awards for academic achievement, endeavour, sports, star of the year and citizenship had me cheering, smiling and clapping. Then one final reward which made me so angry I actually wanted to get up and walk out: 100% attendance! 

 
What? You mean they actually reward children with a certificate for not missing a single day at school? Yes it is actually common place and, in my opinion, absolutely awful!

 
To put this in context the average attendance in my local authority this year is over 95% so hardly a huge issue. I do understand some children are absent for reasons that are unacceptable but is this really something to penalise the child for or is this not something that would be better dealt with via education of the parents or guardians?

 
So what are schools really saying when they reward 100% attendance?

 
1. They are telling children ‘we want you here even if you a sick’. 

Surely this goes against all health and safety and human rights of the child and others in the school? This is telling children that coming to school comes before their own physical and mental well being which is appalling. The entire point of education is that the welfare of the child should be central. By rewarding attendance you encourage children to come even when contagious to other staff and children or when they are in no fit state to learn. Stop and think…if an employer put attendance of higher value than human rights would we not be calling our union and going to the press? Then why do we praise schools when they do this?

 
2. They are telling children ‘school comes before your own family.’

Yes children are put down as ‘unauthorised absence’ when they are off due to a family funeral or when there is a family crisis. A few years ago a good friend of mine lost her entire home and possessions in an awful house fire and as a result of being homeless and having no access to uniform or a roof over their head the children lost out on attendance awards! That, to me, is saying to children that even if you have no home, no clothing and no bed to sleep in you should still come to school. In other words, we just don’t care about your home life as long as you attend, even if you are in no state to learn! 

My own family had a sudden death in the family this year and as the immediate relatives it was down to us to make all the funeral arrangements and deal with the estate. The problem was the relative (my children’s gran) lived over 400 miles away. Did school really expect me to say to the undertaker ‘I’m so sorry but as this is term time could you keep the body until the next school holiday?’ Life does not run to school timetables and children are part of wider families where death, hospital stays, separation and unexpected events happen. Do we actually want to live in a society that places school attendance above the welfare of our own children?

 
3. They are telling children ‘turning up is just as important as learning’ 

That sounds good doesn’t it. They will claim this is an award ‘that all can achieve’ wether they are academic or even have additional support needs. You don’t need to be sporty or overly confident or even the ‘teacher’s pet’ to get attendance so what’s the problem? The issue here is that children come to school not simply to have their name ticked on a register as having attended but to learn and develop. We are supposed to be preparing children for the future but what employer would want someone turning up to work doing nothing? If a child has managed to keep up with the pace of learning and tried their best all year is this not of much more long term value than just being there?

 
I get that schools want children there. I understand they are accountable to the local authority for attendance. I understand they want to be seen as inclusive and have awards for children that struggle academically or do not overtly shine out in any subject, but why pick attendance?

 
Make school a safe haven, a place of significance and fun where children want to be. Educate parents on the importance of helping your child to attend as much as possible. But please, do NOT reward children for coming in when unwell, for putting school above family or for just merely having their name ticked on a register. 

 
I thought we were all about having the child at the centre or getting it right for every child or whatever else they wish to call it?

 
Oh and while I am here: not one of the staff members in her school this year would have gained an attendance certificate so why should the children not be treated the same?