Parents: tell it like it is!

In times of universal deceit, telling the truth will be a revolutionary act.  - George Orwell

Below are some tips and experiences from a variety of wonderful parents. Others may choose to highlight stories of good practice elsewhere, here parents have a space for them to share the reality of their lives. I hope it will help other parents/carers see that they are not alone in this and that, sadly, poor experiences are widely shared. 

Do contact me if you want to add your own experiences. I am handing over first to a parent who describes the daily nightmare of the SEN system so much better than I could hope to:
"My boys are brighter than me. They are more determined than me. They work twice as hard in the course of one day than I do in a month. They're the dictionary definition of the 'strivers' you hear this Government banging on about every chance it gets. Despite all this, they'll have a tiny fraction of the life chances I've had. 
How come? It's not because they're disabled. There are ways and means of accepting, adjusting for, and overcoming that. It's down to one reason, and one reason only. It's because they not getting the support they need, in the quality and quantity they need, when they need it most - and the people who are stopping them from getting it are people whose job it is to help them.
It's not just the hollow-souled Dementors in the LA SEN offices. The disease is deeper than that. It's the school senior leadership teams who believe that £6k is better spent on mock-Ofsteds than on bought-in SALT. It's the Tribunal panel members on £450 per day, intoning piously on a cost differential that's less than the cost of the panel's annual first class upgrade expenses. It's the Council chief executives who pay end-year bonuses to SEN teams if they reduce spending on indie or non-maintained placements. And ultimately, it's a Secretary of State of Education who is willing and able to bring LA education services to heel when it suits him - but who won't do the same for our kids, even though he has a sibling with SN.
With the exception of a handful of brave, talented, and increasingly kamikaze professionals, we're on our own.
Fight together, or see our kids sink. And I'll fight with my last gin-soaked breath."
Corruption and the system
"What I like about so-called "banana republics" is that everyone is HONEST about the corruption, from the moment you have to slip some jobsworth a fiver at airport arrivals. You know where you stand, and can arrange your plans accordingly. The SN "industry" on the other hand stabs you in the back at every turn, & delivers it's harshest blows via marionettes who have the AUDACITY to pretend they "care" more about your child than you do. You may not get an overt visual of the "backhanders" and inducements to malpractice that exist, but exist they do."
"Talk of SEN panels is piffle. A charade to make you think something almost judicious is going on. Most of the time decisions are made by education officers and their managers and they are made with funding in mind - how much will this cost? Of course, that is unlawful under the Education Act, so they have to pretend someone has carefully and independently considered 'need'. At best these panels, comprising wholly of LA staff, rubber stamp decisions. If they don't, why not let parents observe or have full details of their decision-making? Or, at the very least, identify those making the decision!"
"The most shocking thing about the whole 'SEN journey' for me is the extent to which adults are prepared to lie to the detriment of a child and often for no good reason. Head teachers, heads of NHS departments, Chief Executives of Hospital Trusts - all over the cost of a piddling bit of provision"
"I have gone through life believing the best in people, and that people and organisations will want to help the most vulnerable people in our society, a disabled child. However, my gentle illusions have been shattered in my 18-month long battle to get my child a Statement of Educational Needs. From my LA, I have experienced first hand institutional bullying designed to cost me huge sums of money (tens of thousands of pounds), strategies to put me off getting my child provision, and tactics designed to make me continue my battle without legal representation. I have been lied to, I have not been consulted over my child's education, and I have seen first hand LA practices that are not only immoral but are also illegal. I don't want what's 'best' for my child. I only want him to have 'adequate' provision and a basic British right: an education in a school.Would I do it again? Yes! I am his ONLY hope for a future."
"My experience is that often Local Authorities are not refusing provision (to a child who desperately needs it for a chance at life) to protect the public purse or due to cuts, but on the basis of principle, ego-satisfaction, empire protection and sometimes simply because they can."
"I have done my absolute best. I have made mistakes but they are not mistakes that could have been avoided since they were to do with trusting the system and taking seriously tribunal deadlines etc. and believing the LA would do the same, that kind of thing. Whilst it is too late for me to learn from them, it isn't too late for others that I can share them with. That's why I want to shout out: 'Don't consent to sharing information!', 'Don't trust Parent Partnership', 'Take a witness', 'Don't EVER think that this is your one meeting to get things sorted. Chances are no-ones going to listen however articulate and convincing your argument, and you can bet with some certainty there will be another meeting 6 months from now to discuss exactly the same thing!"
Pressure on parents
"When the system was really getting me down and I began to see the true corruption and collusion behind my back I hit an all time low and visited my GP, who told me that disagreeing with professionals and paranoia were symptoms of a personality disorder! I don't think the GP was in on the institutional bullying, but one of the reasons it is so rife is because it is mostly utterly unbelievable how much brutality parents of children with special needs can face just to get an adequate education for them."
" We all need 3 specialist skills:
(i) We have to be BETTER parents than our peers generally.
(ii) We have to acquire the therapeutic,  legal, and pedagogical skills to fill in the gaping holes left by inadequate provision at every turn. (that includes healing any emotional damage to the child by the way, not just life skills & the 3R's etc). 
(iii) We have to know when a specific battle is worth the fight - e.g , a nervous breakdown brought on by exhaustion in ourselves, extensive damage to the quality of our family life or it's very destruction? (it's not always the headline battles such as Tribunal that can bring you to this point by the way, the drip drip effect of a poor class teacher or TA could be enough in the right circumstances). "
"They sit back and let me do everything and pay for everything, while they criticise and undermine me and then they seek to tell me to my face that their only interest is my child."
"My LA makes you jump through hoops for everything and anything because it can. Regardless of the lack of evidence to support its view, they will drag things out to the last minute because it saves money. There is a complete lack of oversight. Councillors are worse than useless and haven't a clue what is going on and the Local Government Ombudsman green lights this corrupt system"
You have to be tenacious and persistent - no waving the white flag too early! LA's and schools rely on many parents falling by the wayside as the effort involved in fighting them can be too great on top of the day to day management of your child's needs. Don't give in - support is out there for you."
You are the only one genuinely fighting for the best for your child. Everyone whose job it is to help, has many other issues on their remit. Your child is just a number to the vast majority of them. Things change when you pay professionals, but only for as long as you can keep paying, if your funds run out, they vanish. Once in a blue moon, you meet someone who really does help. When you do, let them know how much you appreciate it, tell them over and over again and they'll keep helping you (everyone likes the warm fuzzy feeling of lots of compliments, especially when they're heartfelt). 
You will loose at least half your friends when you start on the journey of having a "special needs child" - just at a time when you need them most. You will hit rock bottom in the friends department, and some of your family may be utterly rubbish too. However, as time goes on, you find the support groups, you meet others in the same boat, and just others who understand, and you will make some wonderful new friends. It's taken me a few years, but I now have a super support network. In the meantime, do not be afraid of ringing up support groups and sobbing -they're good people and 'get it'. 
You become quite a different person. I've found some parts of the old me have just vanished. I now have the patience of a saint at home, but none what-so-ever with the many twonks I seem to encounter 'out there'. Most of the time I have skin so thick I could give an elephant a run for it's money, yet sometimes sob at a stare from a stranger. Nothing embarrasses me anymore, nothing. My sense of humour has become a little twisted. And, strangely, I like myself more - maybe that has something to do with the fact there is no time for naval gazing these days.
You will hear this over and over in the early days, to the point you will want to deck the person saying it - but it does get a bit easier. Not in the sense of less work, as it's always a lot of work, but in the sense of it becomes less of a trauma and just gradually evolves in to your normal"
Working with schools
"In 5 schools I have yet to see a SMART IEP written by a teacher. I don't think they get any training in this."
"My son's teacher, in his Ofsted outstanding school, told me I should just 'enjoy him' and that no one gets statements. Well, I do 'enjoy' my son, I just don't enjoy watching him be failed. So I got him a statement so I could force them all to do what they should have been doing anyway." 
"Schools vary enormously. There are schools out there that really care and will stand up to LAs to get a child provision. Unfortunately, there are others who would rather lie or watch a child go without the support they need than ruffle LA feathers. Choose with care.The head is the measure of the school - don't pick a 'line man for the county'!" 
"A school that claims to have extensive experience with children with disabilities doesn't necessarily have any expertise."
"The SENCO at my daughter's school was adamant I should not request a statutory assessment, so I arranged a meeting with her and the head and presented them with all reports from salt, OT, physio and paediatrician. The SENCO then asked for more time to comment. She phoned me a few days later saying that, when presented with all reports, she felt my daughter did need a statement and that the school are now going to slowly begin to compile their evidence. At this point I informed her that I had sent off my request for a statutory assessment the previous day. Within a few hours she phoned me again asking me to come in and meet with herself and LA educational psychologist. This meeting took 2 hours, with the educational psychologist explaining why my daughter won't get a statement and how I've made things worse by requesting the statutory assessment. Considering she hasn't even met my daughter, I asked her when she could assess her. Her reply? She has no time until December to even fit in an observation! Yet she could spare 2 hours to lecture me! She also informed me that it was parents like me who put her job on the line, applying for statutory assessments when the educational psychologists have no time to assess! I left the meeting in tears" 
Working with professionals
"Never allow yourself to trust a professional. My daughter was diagnosed with a speech disorder in 2011 and I only found out a few weeks ago when I requested all reports from  the speech and language therapist (SALT) to apply for a statutory assessment. The speech and language therapist (SALT) who diagnosed my daughter was involved again when she was referred back by school for the second time last year. But, she simply discharged her due to my daughter's attention skills being immature. So my daughter has been left with no SALT provision for 2 years, which has now resulted in her not being able to blend sounds to read or spell. I was present at all her SALT assessments and I was not once informed that my daughter had a speech disorder, I was just told she needed a bit of therapy to work on her clarity! The worse thing is my daughter is now being investigated by paediatrician for possible brain damage resulting from cerebral palsy. The speech disorder that my daughter has been diagnosed with is a classic sign of cerebral palsy. If I had been informed of this diagnosis in 2011 when it was made, it may have helped to get a referral to paediatrician. I just feel so let down by this." 
"The word 'professional' means that someone is paid for their work, it doesn't mean they are an expert. It is entirely probable that, as a parent, you have more expertise with regards to meeting your child's needs than a professional, though you are not paid."

No comments:

Post a Comment