New Parent Group to harness concerns of SEN issues, and stage a march on No 10!

[acorns47]

Hi I am acorns 47, and new to mumsnet. I am part of small group of parents who have recently formed a parent action group to highlight the failings in SEN provision. We are called www.SEN-sible-Education.com and we need your views right now. There seems to be an overriding concensus that such problems are mainly affecting autistic children. I do not believe this is the case, and would now request your views to highlight what problems you / your child with SEN have experienced in the education system. The problems can be as wide and diverse as you feel. Here are just a few examples:

Child Protection/ health & safety, moving & handling/ SENDIST appeals/statementing process/lack of teacher understanding, training or support/lack of support for parents/inclusion/exclusion/eating,drinking/language provision.....to name but a few.

PLEASE PLEASE, can you write here your thoughts, views and concerns, - please state your child's area of SEN if known. I will post this on our own group and as soon as we have collated all the information I will give feedback. Many thanks

Hi acorn! I shall try not to get on my high horse!
My son suffered - and I mean suffered - from a form of neglect that is happening in schools, but would not be tolerated anywhere else. He also suffered from a lot of negative attention which made him (a cheerful child) very sad, suffer nightmares. I had to drag him to school because he was fearful of getting into trouble.
All children are expected to have basic skills on entering school (self care, toileting, selffeeding, communicating, understanding others, dressing, sitting still, lining up, sharing, hearing in a noisy enviroment etc). If a child has devopment that is slower then their peers, then some or all of these skills may be at an earlier level. Provision for the care and support of these children is, in many cases almost non existant. The system to get support is too slow and inflexable! Children are harmed whilst the system proves it is failing. Families suffer. Other children suffer.
My son started school without a diagnosis, other than 'developmental delay'. Nursery records showed he was developmentally functioning roughly as a 2 year old. I had meetings before starting school and later and told them he had learning disability and needed constant support. I signed papers to get the statementing process under way. (I did not know at that stage that a parent could request a statement or challenge a refusal). The school withdrew them saying Ds was 'not bad enough'. I found this out after several months, they wanted more evidence.
Once he started school things got worse. He cried and misbehaved in the afternoon - and would be crying with hunger and thirst on collection (the children had little adult support at lunchtime so he used to play instead of eating he was not mature enough to realise he should eat and his self feeding was poor) He often had untreated injuries (poor cordination but little language to ask for help). I had to go into change him if he had a toileting accident (frequent). He got sent home often for breaking rules like picking flowers (his memory for rules was elementary). He often upset or injury to others ( poor spacial awareness, knocking others in his clumsiness, poor understanding). He was sent to sit unwatched outside the HT office next to an unmanned open front door and escaped onto the road on several occasions.
Ds came home to lunch after the first few weeks - school were adamant they could provide no support. This continued for 2 years!
To cut a long story short - it took 3 years to get a statement for my son! During this time he had at best 5 hours support a week, at worst nothing. He lost skills during this time, picking them back up in the holidays. He is now at a special school. He has severe learning disbility, complicated by ADHD and ASD. He developed some difficult attention seeking behaviours during those neglectful 3 years in poorly supported ms.

The failings are with the entire system.

1. the policy of keeping all children in ms without adiquate support for staff or children.
2. the gates to jump over to get support. It should not take 3 years of neglect to prove that the support is inadiquate. The idea of gradually increasing support is flawed.
3. The LEA - who look only at very low figures and assume a child without a diagnosis has no sen! Who don't listen to teachers, and tell parents their child does not have LD!! Making people wait till their child is 4 years behind, or proof of very low (1 or lower in our lea) centiles before doing assessment.
4. parents should get support. Information should be readilly available and not secretive.
5. personal/ caring/ support should be available for those that really need it. Children should not be left to sit in wet or soiled clothes if they cannot change themselves. Children should not go thirsty or hungry if they lack the physical skills or understanding to help themselves.
6. Medical support and staff training for medical needs is often lacking. Systems should be in place from day one for a child who needs it. Better stop there!! HTH Magso

Oops forgot to mention lack of SALT! ( Ds on or below first centile on receptive language got termly 10 minute assessments - school could not spare a TA to learn from the SALT so it was up to me again to follow SALT instructions at home).