Guest post: “My son Freddy was 11 years old when he was first excluded from school”

[MumsnetGuestPosts]

My son Freddy was 11 years old when he was first excluded from school. Having been diagnosed with autism and learning difficulties, he had been well-supported in a special needs nursery and mainstream primary school with one-to-one learning support. But then came the transition to secondary school and with it, the gaping chasm between the needs of the child and family and the capacity of the school and local authority to act or support.

After just 12 days (only five of which he had been allowed to attend) our vulnerable son, whose needs were already fully documented, was permanently excluded.

Despite the fact that his known food allergies were ignored, exacerbating his behaviour, and that the one-to-one support to which he was entitled had not been provided, our appeal failed.

Following Freddy’s exclusion we were left totally alone to juggle the anxiety and complexities of an autistic child with two full-time jobs and the needs of our younger child. There was no childcare support, no suggestion of an alternative placement, no social work guidance, no advocacy, no counselling or CAMHS support, not even a place in the SEND holiday scheme.

Freddy was struggling to cope with the stress and distress of being excluded and was provided with only three hours a week of tutor time. This left him isolated and did not constitute an education.

For many months, there was only one beacon of light – the local Scouts group who, without any special skills or resources, were able to welcome Freddy. Still today, every time we pass the church hall where they met, Freddy says “Remember the Scouts?” And I do.

This act of kindness was in sharp contrast to the sense of abandonment we felt in the midst of the exclusions process which dragged on for months and begs the question: why was there no advocacy, support or practical help when the school could not cope and neither could we?

Seventeen years on, Freddy is settled in supported living with excellent support. However, Coram’s recently published research, Unfair Results: the views and experiences of pupils and parents in education exclusion, has shown that isolation, poor communication and lack of support remains the reality for far too many children and families following school exclusion.

Coram’s report, which contributed to the government review into school exclusions led by Edward Timpson, has found that over 80% of parents of children who were permanently excluded received inadequate support to find an alternative school place for their child.

Alongside this, three-quarters of parents whose child had been temporarily excluded felt that they received insufficient support in preparing for their child’s return to school. Nearly 80% of parents also reported poor communication with the school following exclusion.

Coram’s Legal Practice, one of only two in the country that undertake legal aid work on education issues, has found that all too many of the exclusion cases they deal with relate to children with special educational needs whose education, health and care plans have not been implemented.

Coram sees cases every week where children have spent months and even years out of school before a solution is found. That is why we are calling for local authorities to account for the number of teaching days lost between a permanent exclusion being made and an alternative school place being found.

The Timpson Review on school exclusion is a welcome, wide-ranging, balanced and important review. If implemented, it will help the committed professionals across the system to change the chances for the next generation.

Schools have a duty to all their children and sometimes exclusion may be necessary and appropriate; the recommendations to update the statutory guidance for school leaders and for a concerted effort to improve consistency of good practice are welcome.

But this should go further: young people and parents need to be participants in the process and to have specific guidance with clear timescales as well as access to help and advice, so they can work with authorities and schools to secure the educational future for their child.

While it will take time to address the many recommendations on process, incentives and accountability for the longer term, let us not forget that every day matters in the life of a child. Therefore, we must ensure that parents, carers and children are never again left feeling they have to cope alone and forced to fight for their child’s right to education.

[EKGEMS]

I've known multiple families of autistic children with challenging behavior find appropriate education but it may be more of a urban/suburban areas that have access vs small towns/rural areas

[softlykitten]

holdingonbyathread I don't want to say the exact name (they have a very small intake so students are easily identifiable) but do a Google for the Cambian, Priory, and SENAD group schools. The companies run a range of specialist schools, some for higher functioning autism (which normally offer a more academic curriculum) and some for those with autism with learning disabilities.

Rage It took two years of assessments, appeals and tribunals to get a statement and placement. I wasn't able to put in a claim for costs unfortunately, as the bar is set quite high. I had to claim DLA and carers allowance to survive, although I had some savings to start off with (quickly depleted). The DLA forms took ages to fill in, but we were awarded without too much of a fight as we had so much evidence from his exclusions and assessments, and carers allowance was pretty straightforward to get once his DLA was awarded.

EKGEMS I've heard that it's much easier to get support in the US, but there's also a presumption of educating in mainstream, and there aren't any specialist schools at all that exist like the one where my DS had to go - a 24 hour curriculum for students with autism and associated challenging behaviour. The few specialist schools that do exist over there tend to have admissions policies which refuse entry to autistic students who exhibit challenging behaviour, and the only schools that will deal with that kind of behaviour seem to be military schools which are certainly not autism-friendly!

[EKGEMS]

How heartbreaking! Here in the US we get a lot of things wrong but my son has benefited from the No child left behind act and the Americans with disabilities act and the Separate but equal US Supreme Court decision which allowed one to one support for him from local schools beginning at age two thru 22.

[RageAgainstTheVendingMachine]

Hi softly
How much was thousands over how long a period and were you entitled to any of it back? Thanks in advance
Also - I assume during all this, especially the constant exclusions and meetings, that you were not able to work as well as having to give up your degree...what did you live on? Were you entitled to benefits of any kind or any kind of carers' allowance and if so, which, and did you have to fight tooth and nail for them too? Thank you.

[holdingonbyathread]

Softleykitten - what secondary school did your son go to? It sounds like the kind of school we will need for our son? Thanks.

[softlykitten]

I can really relate to this post. My son was 8 when he was first excluded from school. He has autism, ADHD, dyspraxia, dyslexia, depression, anxiety, with traits of demand avoidance. Primary school was a huge struggle for him, and I had to deal with illegal exclusions and constant appointments as a single parent, and had to give up studying a full-time degree to be able to manage his needs. We were obstructed in gaining a statement (as it was known then) for his SEN, and I spent hours preparing for multiple tribunals in order to secure him one, and to get funding for a 1:1 support.

When it came to secondary transfer, it was clear that his sensory needs were too high for him to be able to attend a mainstream secondary, as they would often lead to meltdowns. I had to consult with all our local secondary schools and all the heads agreed that their school would not be suitable. DS is very bright and needed a school with a suitable curriculum (to GCSE/A Level), yet also needed a specialist environment to manage his autism and sensory needs. We had to look in the private residential sector to find a suitable placement - which cost over £130,000 a year and was 100 miles away. The LA opposed our choice, but I was determined and built up a strong case for the placement at tribunal, so they were forced to name the school and pay the full fees, plus all transport costs (taxi with escort).

I found a lot of helpful sources of advice online when I was struggling to find out information - MN was a great resource, plus IPSEA and SOS SEN. We really needed specialist legal advice in our case, and that cost £1000s (as a single parent that meant getting into debt), but it was worth it for us as DS thrived in his school and we got over £1m worth of fees paid. He's now living back at home, and his needs are much more manageable, and he's working part-time and will be starting an OU degree soon.

[SnuggyBuggy]

The problem with mainstream secondary schools is they tend to be big, noisy, impersonal and with little supervision. It can be a huge and daunting transition. They aren't ideal for lots of 11 year olds but there don't seem to be many alternatives.

[Loui1974]

Hi my son is 15 and could an exclusion from school , he is doing well at school , good grades and the teachers all say he is a lovely polite boy , the other day he smacked his friend in the face , cause his friend had been saying nasty things to him about the infected eczema on his face for over a week now , and my son just snapped and hit him in the face , my son instantly regretted and did say sorry to his friend and his friend did say to the teachers him didn’t want to take but my sons head of year phoned and said he could face exclusion this behaviour is out of character for my son and he knows he done , wrong any advice would be appreciated I’m so worried and stressed by this

[NiamhMumsnet]

Hello everyone,
Below is a comment from Dr Carol Homden.

“Thank you to everyone who has replied to this post. It is clearly a topic that has resonated with many parents.

I was very sad but, not surprised, to read in the comments that a number of readers’ children have missed years off school following an exclusion and that the families received no support. This is absolutely unacceptable. Local authorities have a duty to provide a either a school place or appropriate alternative provision. That is why Coram is calling for local authorities to be accountable for the amount of teaching time lost following a permanent exclusion to ensure that the effect on the child’s education and wellbeing is minimised.

My son Freddy was excluded from a special needs secondary school that failed to implement his education, health and care plan. It look us a while but eventually we found a residential school for him. It is also deeply worrying that so many children with SEN potentially able to remain in mainstream school do not receive the support to which they are entitled, leaving them even more vulnerable to exclusion.

Schools and local authorities must work together to ensure swift access to professional support to assess a child’s needs and that such support is provided or an alternative setting that can meet the child’s needs is found within a reasonable timeframe. Schools as well as parents need help with this but families especially should not be left to struggle alone through school exclusion.

My very best wishes and solidarity to the parents who have shared their experiences. Families who are affected by this issue can contact the Child Law Advice Service for legal advice and parents of autistic children will find information also from the National Autistic Society at //www.autism.org.uk.”

[missfliss]

Absolutely support you OP.
Currently battling with our LA to get the right support for our son.
There is a) not enough of the right provision ( he falls into that camp of sensory issues making mainstream unsuitable) and specific learning disabilities alongside autism but needing a peer group and a curriculum not necessarily provided at most broad reaching special schools.

There are barely any schools that cater to him, and the LA don't want to fund it.

A lose / lose

[RageAgainstTheVendingMachine]

but they were quite happy to exclude, isolate and blame us for his difficulties in order to keep him there

So in their opinion he wasn't atypical enough for a special school referral but nor did they want to make adjustments to manage his needs?

I assume you had to appeal against the LEA, how much has it cost?

[professorpecked]

holdingonbyathread - I agree that lack of choice of school is a big issue for parents of children with SN. This can also impact substantially on the child or young person's experience within their peer group.
Parents of children in mainstream school usually have the choice to move schools if the child is struggling socially within their peer group - it's just not an option for many families where a child is placed in specialist provision.

[holdingonbyathread]

There's quite a lot of sweeping generalisations here.

My autistic son (8) was excluded 8 times (fixed term) and the mainstream school stated time and time again they could meet his needs and he absolutely did not / could not go to a special school. He's academically gifted, social, funny and wants friends. He's also highly anxious and has a very low threshold for fight or flight in a sensory and socially confusing environment. His MS school feel he should go on to the grammar school, go to university etc and be fully independent but they were quite happy to exclude, isolate and blame us for his difficulties in order to keep him there

He's now been out of school for nearly a year and finally the LEA are placing him in the only autistic school in the county which is mostly for children with learning disabilities. Neither is the right option but we don't get any choice like non SEN children do.

Every child has a legal right to an education. Not jut the non-SEN, cheap, don't need any training, aren't a hassle children.

[PickAChew]

Hmm. My boys with asd go to school to be educated, too. They are out of mainstream but many kids with asd do behave perfectly well, so long as they have the support they need. If their needs are ignored and they are left to flounder, that's when they become overwhelmed and run out, lose concentration, start stimming, become distressed and agitated, hide under the table, or whatever their go to response is.

[Allington]

Yes, I wish I could say I was surprised by how many posters rush to the defense of teachers, when nowhere does the OP say it was the fault of any individual teacher or school, only that it was beyond 'the capacity of the school and local authority to act or support'.

Nor does the OP claim that her child should have been left in a position where he was disrupting the education of other children, so I don't know why anyone feels it necessary to say that is shouldn't be allowed.

We don't have the full information, but it sounds as if he managed in MS primary school with one-to-one support, then he moved to MS secondary (with its additional stresses) he was not provided with one-to-one support even though he should have been.

And then was not provided with a suitable place (ANY place) at ANY school, MS or SS.

Every child is entitled to an education. Unfortunately, this is often denied to the most vulnerable and in need of support. I wish those who are most vocal about the rights of the rest of the class (which no-one disputes) would be as vocal about the need for better specialist support and provision.

Obviously that does not apply to anyone reading this who IS as active in promoting improved SN provision as much as not allowing MS provision to be disrupted...

[JanMeyer]

You say your dc is now under supported living, this would perhaps mean if he’s not going to be a ‘mainstream’ adult then perhaps mainstream school wasn’t right for him.

That's quite an assumption there, just because a person needs supported living doesn't mean a mainstream school isn't (or wasn't) the right choice for them. In most places in the UK if you have an autistic child who doesn't have a learning disability (or one who does but is not deemed "bad enough" for special school) then making the best of it in mainstream is pretty much the only option available unless you can homeschool.

You're conflating two different things I think. To put things into perspective I have a learning disabled sibling who would have been eaten alive in a mainstream secondary school.
Thankfully they went to the local special school before moving on to college. They now have a full time job and are in the process of preparing to move out. Point is, don't make assumptions or sweeping generalisations. A child not being suitable for mainstream school doesn't equate to an adult that will end up in supported living. They needed the time and space to mature and take their own path, something mainstream couldn't have offered.

One thing people don't seem to realise is that parents often don't want their autistic kids in a mainstream setting. People seem to think there's an abundance of special school places available for kids with every different condition. You see it on here all the time, the first mention of challenging behaviour and the "he should be in a special school" brigade appear en masse. Most people seem to be blissfully unaware of how difficult it can be to get a special school place, or how bad things have to get one.
I'll never understand why the special needs system in the UK is predicated on "lets see how bad things have to get before we provide the appropriate support/school place."
Meanwhile what about the autistic kids left to flounder and fall apart in an environment unsuited to them?
Maybe there'd be less autistic kids with mental health problems if this wasn't the case.

[Grasspigeons]

calpoppincalpol - schools are there to educate all children not just the cheap ones.

No child should have a legal document outlining what is needed for them to access education and then face school without those measures in place.

I agree noone should have to put up with challenging behaviour in their classroom. A significant amount of challenging behaviour from childen with SN can be prevented by giving them the support they need. Funding needs to reflect thid.

If that cant be provided mainstream it shouldnt be the norm to let the children struggle until they break and become disruptive, exclude them, then miss years of schooling with no support for the family because there arent enough special schools. It should be the norm to recognise that and swiftly transition them to a place that can deal with their needs.

[calpoppincalpol]

Schools are there to educate kids and not to be abused( physically, verbally etc) on a daily basis. They are not babysitters. Teachers are over worked, under paid and stressed out especially at secondary level. I still remember my secondary days and it was brutal for teachers.
They have 30+ horomonal teens in one room and so yeah, they have to deal with bad behaviour and abuse. Seems to be the only job where it is expected to be tolerated.
Also, one child's bad behaviour affects all be other children's learning , exam results and teachers targets. So yeah . Even though a child has sn ( my own does by the way) it's no excuse for impacting on the classroom as a whole.

[calpoppincalpol]

Is this an advert??

[Grasspigeons]

Thanks for this post. It reflect the story of many, many children with autism. The system isn't fit for purpose. It is slow, complicated to understand, underfunded and difficult to enforce. Child after child finds themselves missing 1 or 2 years education whilst people wrangle over who should support them and where.

Mainstream can work for many children with the right support. This support should be funded well and in a timely manner. No child should face the school day having their allergy ignored and the 1:1 they need not in place. Schools vary hugely in their willingness and ability to support children and this needs to change, but its incredibly easy to get away with not doing a good enough job.

As for special schools - there is a real problem with children of at least average academic ability but needing specialist provision for sensory/communication/processing issues. Its basically doesn't exist.

[ClarkeMurphy]

Despite the fact that his known food allergies were ignored, exacerbating his behaviour, and that the one-to-one support to which he was entitled had not been provided, our appeal failed.

This is awful. Allergies are not taken nearly seriously enough unless they are life threatening. And specified one-to-one support should always be allocated if required. It isn't okay to exclude children if their acknowledged medical needs (physical and mental) aren't being met.

Issues of funding, special schools, etc are important in the wider debate. But the least we can do is accept that this child was comprehensively failed by the system.

[PickAChew]

Mainstream isn't the answer for many of these kids but try finding a special school placement for a child without learning disability in many areas of England and you will come up against a total brick wall. My eldest travels 50 miles each way to a specialist non-maintained school.

[alwaystimeforcakeandtea]

Teachermaths you speak sense. I am a teacher and also think that there is a gap in school provision between mainstream and special. It should not be so damn hard for schools and parents to get the right support for pupils with SEND. Mainstream is sometimes suitable but so often not.

[Teachermaths]

What @becles said.

The school are clearly at fault with their lack of support regarding 1-1. However mainstream isn't the answer for all students. There should be more autism and asd specialist schools. Like a pp said, students who end up in supported living aren't "mainstream" adults. These students probably don't need a special school (which are increasingly full with students with severe physical disabilities), instead a smaller school with smaller classes and more TAs would be ideal. The same curriculum would be covered as mainstream, just on a smaller scale and provide better for pupils. Unfortunately the government doesn't want to fund this.

[Bonkerz]

My own son was permanently excluded from his first school age 6 and then the second primary school couldn't cope with him and sent him to a local pupil referral unit. He was there for 18 months.
In this time we got a diagnosis of autism and managed to fight to get a statement. Despite all this the council didn't see any urgency in finding my son a school.
I ended up writing to 152 schools within a 20 mile radius and asked then if they could provide my son with a safe place to learn. 56 of those school replied to me with a flat NO. The rest didn't even acknowledge my letter.
Eventually after 2 years we took the council to tribunal and won a place at the local priory private autistic school which had been denied to us previously.
It's not been easy but DS is 19 in July, has a good job and is sitting his a levels at the moment. He drives and is generally independent although still needs a lot of support in the background.