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.

Forced onto my knees to beg for support

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I try to stay positive. I try my best to work within the system and I am very grateful for each and every professional involved with my children. But right now I am forced onto my knees to beg just for basic support and it is disgusting.

Here are some examples:

My six year old child is non verbal. He has complex medical and developmental needs. He has a diagnosis of classic autism, neurofibromatosis type 1, global developmental delay, severe learning disability, vision impairment and pica. He attends a specialist school miles away from our home. Yet despite the fact he can not jump, balance on one leg, speak a single word, dress himself, is not toilet trained and his understanding is very limited, he is not able to receive any physiotherapy or speech therapy! You see apparently they would not ‘add value’ to what he already receives, which in fact is only one sole autism occupational therapist who currently sees us at home once every three months! So school are left to do what they can and we are left with a very frustrated, self harming, agitated child with no means of communication and a high level of care needs.

It isn’t that I haven’t tried fighting the system for him either. I fought to get him diagnosed from when he was less than a year old. No I didn’t want my perfect baby boy labelled with a life long neurological condition but I knew early on that despite policies stating support would be based upon ‘need’ rather than ‘diagnosis’ it is very hard to get the ‘need’ recognised without an actual name. And ‘autism’ is way easier to write than ‘difficulty communication, socially unaware and unresponsive and engaging in repetitive activity including flapping, rocking and self stimulating activities. In addition it appears my son is not meeting milestones expected of his age including sitting, walking, speaking and self care skills.’ Writing the latter on so many forms was giving me writers cramp!

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So we got the diagnosis. We fought and got him his school. And now one by one the system is just dropping him like a hot potato. It seems my child is too costly. He can not enable professionals to tick boxes quickly enough, he is too time consuming. Instead they sent parents on training courses (at the parents expense), pay them £61 a week ‘carers allowance’ and leave them to get on with it. They won’t even provide my child with a wheelchair to enable me to take him out safely. Almost three and a half years ago they supplied him with a disability buggy and now this is no longer suitable no-one seems to care. Numerous referrals to wheelchair services later and once again we are still getting nowhere.

But we don’t just have one child. Our second child also has autism and she too is being failed by the same system. A recent visit to our paediatrician confirmed verbally that she is likely to have hyper mobility syndrome. This would certainly explain her joint pain she keeps telling us about, her exhaustion and her ‘interesting’ ways to sit and feel comfortable. It could also help understand her physical delay and inability to meet physical milestones.

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It is one thing to hear your child is struggling. It is another altogether to try and secure help for them. I asked for my daughter to be referred to physiotherapy 13 months ago. Three referrals later and we are STILL waiting to receive word from them. She is forced to use her brother’s disability buggy when we are out due to pain and exhaustion (while we struggle to deal with her brother and his needs without adequate equipment) since wheelchair services are not accepting a referral for her. She is also being let down by speech and language too and is left to struggle in mainstream without so much as a visual timetable. I could have cried witnessing her standing in the middle of her class with her coat and outdoor shoes on as she tried to process the steps required to her daily morning routine. What other children did without thinking required so much more processing for her, yet no-one seems to want to help or support.

Would you believe both my children have all the necessary legal support plans in place? They have fully recognised needs and they have been in the ‘system’ for many years. They also have parents who continually email, phone, self refer and devise strategies of their own to help them. We get the grand total of three hours respite a fortnight. We get very little sleep.

I feel so let down just now. I am watching my children suffer through lack of funds and a system looking for quick fixes. I am a grown woman. I am a strong parent.

But right now I am forced onto my knees to beg for support.

And that breaks my heart.