….that just reforming the statementing system is not enough to relieve the hardship that families like mine face. We also need local services and local schools that are equipped to support the needs of our children. As my story will illustrate, not having access to local schools and services remains one of the biggest barriers to my son’s inclusion in society.
My story starts when my son was a toddler and his unusual behaviours and delayed speech prompted me to share my concerns with our health visitor. Unfortunately she didn’t take my concerns seriously and blamed his delay on being a boy. I was annoyed by her attitude; how could she blame it on him being a boy just because he wouldn’t sit still to complete the tasks given to him! Nevertheless, there wasn’t much I could do at the time. I knew nothing about developmental disabilities, nor did anyone else it seem, and so I just got on with being a mum. However, as the years passed it became more and more apparent that something was not right but I held on to the hope that as soon as he started school someone would listen to me and something would be done.
Initially things looked promising. My son’s difficulties were picked up by his teachers and he was placed on school action and then school action plus. It was an efficient start; the graduated approach helped us to see his difficulties and to work towards individual targets but its effectiveness was short lived. He languished on school action plus for years and even though we regularly expressed our concerns about his development our views were often discarded. Many a time, we were told that our son’s behaviour was due to our poor parenting. Many a time we were told that “they [the local authority] would never give my son a statement”.
Faced with such animosity we approached our GP for help who referred us to a paediatrician who gave him a health check up and assessed him for ADHD. But that is as far as it went; there was no mention of developmental disabilities and I found myself asking for a referral to the child development clinic. They reluctantly agreed and eighteen months later my son was assessed and diagnosed with an autism spectrum disorder. It was a relief that at long last my son had a diagnosis (he was nearly 10 years old).
At that point we thought we had accomplished all we needed to do; a NHS diagnosis which could be acted upon. Unfortunately the school didn’t act upon it and several months later my son became ill and dropped out of school. We sought psychiatric advice but a three month waiting list meant a delay in getting treatment during which time my son deteriorated further and developed agoraphobia. Life became incredibly difficult. His anxiety had exacerbated his autism and he withdrew from everyone around him.
If that wasn’t difficult enough, his school were not interested in maintaining his education. To us it felt as if they had washed their hands of him. We challenged them of course and argued that they had a duty of care to our son to which they responded and provided a teaching assistant who came to our house and worked with him once or twice a week. It doesn’t sound a brilliant set up but my son was in such a poor mental state that he could not engage with anything that was remotely academic. The gentle play-based approach by the teaching assistant was enough until such time that the local authority provided a home tutor several months later. Fortunately the tutor who was designated to us had SEN experience and realised the importance of working with my son through his special interests (lego at the time). This helped my son a lot but we were lucky to get a tutor with such an insight. As you will read later on its pot luck as to the quality of tutor you are provided with.
At the same time we applied for an assessment for a statement of SEN but our application was rejected. In fact it was not made clear that we had been rejected; the letter we received was ambiguous and claimed that they (the local authority) could not assess our son because he was unwell and out of school. It didn’t make sense to us; surely the way my son was should have formed part of his assessment. We challenged them about this during a meeting but the atmosphere was acrimonious. The education officer and the school SENCO took sides against us and bombarded us with all sorts of
bullshit reasons as to why my son would not benefit from a statement of SEN. I remember feeling quite shocked that professionals involved in a supposedly nurturing profession could be so hateful to us and so unsympathetic to my son’s situation.
Undeterred we applied again and this time they agreed to assess. Perhaps they had realised that my son’s condition was no temporary blip but a serious complication that was going to require expert support. Whatever the reason, by the summer of 2010 my son had a statement of SEN and we felt confident that we could now move forwards and settle him into a local school but alas all the specialist places had gone. Because of the delay in getting my son diagnosed and statemented my son had missed out on the transition process to secondary school which meant that there was nowhere for him to go to.
We wanted him to attend the local MLD school because it accommodated pupils with ASD and mental health issues but we were warned off. We were told that if we applied the council would fight us on the basis that our son would impact on the learning of others so we backed off and looked further afield. In hindsight I wish we hadn’t let ourselves be bullied like this but at the time we were too upset about our son’s poor health and how he had been treated by his primary school. We were also trying to deal with the logistics of caring for him around work and family life. It was stressful and exhausting and we were not strong enough at the time to challenge the system on top of everything else. Neither did we have the time; my days were spent caring and rehabilitating our son on top of looking after two other children (one of whom was also showing signs of an ASD). It was more than a full time job.
Nevertheless we found pockets of time to look around a few other schools and eventually we found a specialist ASD school in another borough. I liked the school and I felt my son could do well there but I was worried that the school was too far away for our son to cope with. Our son has an anxiety disorder and ASD which means that he finds it very difficult (if not impossible) to travel out of town. Unfortunately many people do not appreciate the seriousness of an anxiety disorder; they assume it’s just a bit of worry but severe anxiety is debilitating and restricts many sufferers to a life inside their home. Coupled with autism you get a very disabling combination indeed. Unfortunately not one professional appeared to understand this and when I tried to raise my concerns about whether my son would cope with travelling further afield noone listened.
Faced with little choice about where to send our son we accepted the place at the out of borough school. As I said, I liked it and secretly I hoped my son would learn to cope though there was always a niggle that he wouldn’t. A year after he started, that niggle became painful reality. In the autumn of 2011, my son suffered another bout of severe anxiety and dropped out of school. It was a serious regression which his special school couldn’t handle and so we found ourselves yet again in the hands of the home tuition service. This time however the tutors designated to us did not have sufficient knowledge of the autism spectrum. The tutors were out of their depth and struggled to provide any sort of meaningful learning experience. In fact one tutor was so poor that my son would not come out of his bedroom because he felt so intimidated by her. At this point I realised we could not rely upon home tuition as any form of education for our son either now or in the future. It was inadequately staffed by retired teachers who just wanted to do a bit of part time work around their retirement interests. As a result it often felt as though we had to work around them, not us! I often wondered who the service was set up for.
Not surprisingly there was a lot of tension between us and the home tuition service. We really didn’t want anything to do with them but felt under pressure to use them because there was no alternative. The local autism team was inadequate and as far as I was aware restricted its services to ASD pupils in the local mainstream schools. This pretty much discounted my son because he was being schooled out of borough. Then there was CAMHS who were equally inaffective. Aside from medication, there was never any mention of alternative or adjunct therapies and often I was told that autistic children did not benefit from counselling or therapies. I didn’t believe them. Having read a lot of literature, I knew there were ways of helping children like my son but for some reason my local CAMHS did not offer anything to us. No matter how many times I asked for help it wasn’t forthcoming. Services either didn’t exist or were being rationed in a way that excluded us.
By now I realised that it was up to us to help our son feel better; we simply couldn’t wait for services to get their act together. So through much hard work on our part (months and months of repeated exposure and patient nurturing) we helped our son back into school. It hasn’t been easy and its still an ongoing and difficult process but at least he is doing a few lessons a week. However, he is still not properly accessing the curriculum and whilst I am pleased with the progress he has made I am also mindful that he has only eighteen months to go before he leaves school. With having only completed one year of secondary education to date it is likely that he will leave school with no qualifications at all, something that depresses me a lot.
My son may have a lot of difficulties, he may never be able to get academic qualifications but he can do things. He has a natural connection with horses and other animals, he is a whizz on the computer and he is a fantastic support to younger autistic pupils in his school (I see a TA in him, I really do). There is no reason why he should be leaving school without any qualifications but unfortunately his education has damaged him so much that this is what is likely to happen. It’s hard to accept.
As for me, fighting for my son’s rights (and now my aspergers daughter) has impacted on my own health. Depression, anxiety and insomnia curse my life and no matter how hard I try to look after myself, I can’t escape the terrible stress that the education system has inflicted on me and my family. The sense of despair at seeing my children excluded from the education system eats at me nearly every day. It’s hard not to feel despondent for their futures and to worry about what will happen when they become young adults. It’s also hard coming to terms with my own impoverished status brought on by the need for me to care for my children full time. In a way I’ve also become a casualty of our SEN system.
And yet education is a basic right which many families take for granted in this country. I am reminded of this daily as I watch the children down my road go to school and their parents go to work or whatever it is they do. I envy their freedoms and the opportunities they have and I find myself wondering what it must be like to live in a town that wants you. You see to me it doesn’t feel as though we are wanted. There are few services available to support my children and too often we are forced to fend for ourselves or pushed to schools or services many miles away. It really does feel as though we are out of sight, out of mind, one less thing to worry about by an authority who really doesn’t care about its autistic children.
On 18th March a group of parent bloggers will be heading to Westminster to talk to Edward Timpson MP, Minister for Children and Families, about the forthcoming SEN changes. Unfortunately I cannot attend as I have a commitment to a student who I support in further education. However, if I was to meet Edward Timpson MP I would want to highlight the importance of local schools and services for children with disabilities and/or special educational needs. This blog attempts to illustrate the importance of local provision because without it, families like mine struggle to have any sort of quality of life.