By a Newsnet reader
My partner and I home educate our son, who is a sufferer of Asperger’s Syndrome and Cortical Visual Impairment.
Among my closest friends I count sufferers of Mental Health disorders and among many of my close acquaintances I have several who are recovering addicts.
I myself have suffered from Mental Health issues in the past. I believe the current term for all of us is ‘Service Users’. There is a great deal of stigma attached to these issues, but also a great deal to be overcome with the professions that we have to deal with on a regular basis.
Many of my friends, who are in delicate states of mind for all of their various reasons, have to go through the trauma of proving to the system that they genuinely need it’s help, not just once, to their own GP for example, but to the benefit authorities, to social services, to schools and to charities and other grants giving bodies. This puts an immense strain on the claimant, their families and their carers.
Changes that have already been implemented to the benefits system have left many vulnerable people being forced into work or go through a lengthy and stressful appeals system. These are changes happening now, not the awful changes currently making their way through Westminster just now, but the changes already implemented.
I am not going to speak for any of my friends here, but I am going to cite the case of the treatment our family received from our local LEA. Our son was diagnosed with Asperger’s syndrome when he was eight years old. We had already withdrawn him from our local school after Primary 1 because he was having clear difficulties that the school were putting down to bad behaviour. If I were to be truly honest, we were left feeling that we were to blame for his poor behaviour as being bad parents.
Before I go on, I feel I must mention in their most recent HMIE report they were given a rating of good at meeting learning needs and good for Learners’ experiences.
When he came to Secondary age we all decided to give the School a second chance, as my son is very keen on Science and we lack a laboratory. We took the long approach and contacted the LEA an entire year in advance of his joining S1, and tried to use that opportunity to describe his needs to the School so they could be able to deal with him sensibly.
Here I have to explain a little bit about Cortical Visual Impairment. At the start of this process, we did not have this diagnosis for some of our son’s issues, but we began a re-diagnosis period to make sure the School could get access to all of the relevant material about him. This involved regular sessions on anxiety therapy, a lengthy re-assessment of his Asperger’s, an occupational therapy report, a language therapist’s report, visits to the Neurologist and eye tests. Already that’s at least six people we had to take our son to so that he could prove he had extra needs in a school environment, without including out local GPs who have both seen him for his issues.
We then spoke to our first Educational psychologist, who was very open to our thinking and supportive. Unfortunately, she was standing in for her regular colleague and we did not get to deal with her again.
We began to go to the local school for meetings with the head master and staff, working to arrange a period of orientation for our son into the school. We explained that he becomes highly anxious in unfamiliar places and about crowded places.
We asked for a flex-schooling approach, as he has low levels of energy and would need a good deal of time to adjust to formal Schooling. We asked for support for him through classes so that he could have the extra help he needs with many tasks. We asked for him not to attend classes like PE and Technical Design because of the noise levels and high number of potential triggers for our son’s anxiety problems. We asked for him to have a laptop for lessons because he suffers from a tremor that makes handwriting difficult. Handwriting is also an issue for sufferers of CVI, we subsequently learned.
These might seem to the casual observer as quite a long list of demands, but we had at that point been dealing with our son’s difficulties full-time for ten years. We understood and recognised his problems, and had gone to the trouble to make sure we had the medical advice to back us up.
The very first hurdle was over induction and orientation time. The school already ran a series of induction days for all upcoming primary sevens from our area and our son was invited to these. No extra orientation time at all was offered, even though we repeatedly requested it.
Next our son had to undertake a series of tests with the (new) Educational Psychologist, to prove once again that there were areas in which he both had difficulty with and others were he excelled. Then there were more meetings, and the school was still not prepared to meet the things we had asked for. Our son attended some of the induction days. We had more meetings, complaints had to be made about the conduct of the staff at some of these meetings as things were beginning to become highly stressful for us with the schools continuing intransigence.
Summer came and went, and a full year into the process of trying to get our son into school with suitable provisions, he did not finally begin until September, when at last the school made concessions over flexi-schooling and laptop provision. They insisted all along that their teachers would be well informed and had been trained to deal with problems of our son’s nature.
Pause for a second here and consider Asperge’rs Syndrome. Asperger’s is a condition on the Autism spectrum. It is considered to be ‘high-functioning’ meaning that those with the syndrome are usually highly intelligent, often obsessive, verbally communicative and capable of a reasonable degree of independence in many areas. They can also suffer from a severe dislike of sudden change and any uncertainty, and they are often very awkward socially. They can be very comforted by ritual and routine.
But, and this is an important but, these are only general symptoms and some sufferers can be very different or not have some of those symptoms. A lack of imagination is often a symptom, but one thing our son does not lack is imagination, he is a keen story writer and also an expert at creating scenarios that make him panic when faced with unfamiliar or sudden events.
The year he was in S1 contained so many disasters that to list them here would be both tedious, draining and, frankly, personally upsetting. Our son was repeatedly accused of bad behaviour and the school repeatedly blame us for imposing “preferential” treatment for him. We went as far as to take out an FOI on his records, place formal complaints, take those complaints to the council’s Corporate Complaints dept., get sick lines from the doctor because our son was becoming increasingly anxious with every day at school and to attend mediated meetings where nothing constructive ever took place.
It ended with an ultimatum from the school that we either send our son full-time, part-time to their timetable or to withdraw him from school again. By this point we were going through the process of talking to a child psychologist and a neurologist about our son and they both agreed that the classroom environment was an unhealthy one for our son. They recommended we went back to home education, which is exactly what we did.
This was not the end of the process, as we now had to deal with the de-registration process, which was a trial in itself this time. Last time we did it we withdrew Alex over the course of one summer and it was actually painless. This time we had to meet a social worker and an officer from the LEA to approve our request.
The number of people we have had to explain our son to has been phenomenal, but worse still is the number of so-called professionals that have failed to listen to our advice about our son has been nothing short of criminal.
We are not alone, we are not unique. The heavy weight of the hand of the state on it’s vulnerable members is not currently a source for good at all, but a source for great stress and worsening of many problems. If you take the case for not extraditing Gary McKinnon, a large part of it hinges on the possibility of the likliehood of introducing psychosis to Gary because sufferer’s of Asperger’s and ASD are much more prone to such things while under stress than other people.
The UK Government wants to make this harder for vulnerable people. They will want to put my son into a work placement when he is older, and we cannot trust them not to send him somewhere where his problems will be exacerbated.
The UK Government wants to assess whether terminally ill people should be assessed to see if they are fit for work. The UK Government plans to introduce big changes to DLA for children. The UK Government plans all in a timeline that runs all the way through the referendum campaign up until 2016.
These benefit changes are utterly unwelcome and frankly cruel, and we can avoid them by gaining our Independence from such toxic Westminster policies. The economic argument is familiar but the social democratic argument is becoming clearer.
We need to have Scotland’s future in Scotland’s hands to redress the awful damage the current system does to our vulnerable people. We have to opportunity to bring some sanity and unity to the process of helping our vulnerable people. That’s good enough for me to vote yes.