I very much
appreciate that you have invited the parents to write in with their lived
experience. I hope in the near future you will have an open and full dialog
with parents and their children. Children can and do speak eloquently of their
reality and professionals grasping their understanding is of paramount
importance. They should be closely listened to.
I would first
like to explain how we as parents are treated. We are viewed with suspicion,
and we are mercilessly gaslighted. Fabrication and Inducing Illness is being
brought in across the country in education, we seem to have forgotten the cot
deaths in the 1990’s, this accusing all by untrained professionals will have a
massive impact on society and family life in the UK.
Mental Health
is in disarray, with a lack of understanding of cause and effect. Misdiagnosis
of many physical conditions and or lack of vitamins and minerals for a lot of
different reasons; such as celiac disease can have a profound effect on a
growing brain and body, but on average takes 13 years to get a diagnosis. We
need physical cause ruled out before mental health is thought of because of the
problems it causes children when misdiagnosed.
If you look
at the way dyslexic children have been treated along with those who have
autism, and still are. Autistic children are seen as behavioural problems/Mental
Health problems and not as a different viewpoint from the norm. They are given
medication that is not needed and very little support within school or society.
Now they are taking that understanding of diagnosis away, so therefore they
will be seen as? Disruptive normal children?
With a
diagnosis come support and understanding and great things can be achieved. It
is the mindset of education and Government officials that needs addressing with
regards to “labels”. Giving people a “label” is understanding their needs. Have we not learnt from Christy Brown (My Left
Foot Fame), are we now just turning back time on disability?
Being profoundly
dyslexic on bad days and just about able to read and write on good days, I was
applauded at the lack of understanding of the needs and cognitive processes a
person like me must go through to read the simple Lady Bird passages. All three
of my children are dyslexic and nothing in reality has changed in nearly 40
years since I was at school. Fighting an educational system that would rather
gaslight then support. Trust is gone, what authority says, preaches and does
are very different things. They delegate responsibility onto others, giving no
power to enable change in outcome. In other words, they talk a good walk, but
cripple those that have to walk their talk.
My two eldest
have been supported by me to get them to University, yet the school take the
credit. No notes are taken of the extra measures I put in place, so no understanding
is achieved. Both my children have had lack of understanding of the emotional
trauma a school brings down on them when they were unable to keep up with their
counterparts. The teachers often were frustrated with their progress but did
not have the capacity to listen and act upon the information they were given;
not just by me.
Ofsted do not
look for the support and understanding of the curriculum with regards to
children with Chronic conditions. When in chronic and unrelenting pain there is
no capacity to learn, no headspace for anything other than how to breath and
meditate your way through.
Physical
health is not looked at as a possibility when I first came across SEND
My youngest
son became very sick at the age of 8. I received no support, empathy or
allowance for the fact he had multiple infections, and multiple conditions. The
Educational authorities are aware of the pressure doctors are under, and yet I
found both medical and educational professions fighting to delegate
responsibility. Furthermore, they expected me to understand their jargon, the
way they worked and what they needed from me.
All
organisations are only too willing to bring my ability and hold me accountable
for their failings.
I had to find
out all the information myself and am used as a go between; an unpaid employee
that they seemed to think they needed to give very little regard to. To find
the information took me about a week of tracking down who is responsible, then
I found I had to adapt all forms to fit a physical disability and not anxiety
as a school refuser. I have two arch lever files of letters written to gain
support from medical and educational staff. All at a time of unbelievable
stress trying to juggle all the needs of others rather than concentrating on my
family and my very sick child.
There needs
to be a full review with an honest reflection of diversity of disability (including
invisible disabilities caused by long term chronic conditions) and educational
needs. Painting a true picture of the child as an individual. At the moment; it
is more of one size fits all with a defernite leaning towards school
nonattendance that is put down to refusal as the fault of parenting.
Forward for
ME parliamentary Group, Chaired by Countess of Mar have minutes of meetings
dating back from 2009 with regards to education for children such as my son
with the invisible and Chronic illness Myalgic Encephalomyelitis (ME). Along
with Jane Colby of the Tymes Trust (a former Head Mistress) they have tirelessly
strived to achieve the proper and appropriate education for children with ME.
The Tymes Trust has excellent information, experience and support, both need to
be listened to. Yet, in my experience you can give the information, but if the
Educational establishments do not want to listen it puts parents and ultimately
their children in a very difficult position.
However, I
have been lucky with the support of Tymes Trust, once a home tutor was put in
place I found their ability and experience to work in harmony with my child has
been exceptional and should be celebrated, understood and promoted as part of the
gold standard of any educational system.
We should be
proud of those that achieve against all obstacles, and not those that achieve
through good luck, good health and fortune.
