Tell it like it is - short comments for my blog

[inappropriatelyemployed]

Your chance to tell it like it is - anonymously.

I can post your pearls of wisdom on my blog.

I can let you have details if you PM me or you can just post on here.

A short para or two with the things you want to tell other parents.

Anything: no holds barred.

COME ON - MAKE SOME NOISE!!

The key to getting journos on board is often to write their article for them.

It needs to be editing-friendly, which means it has to be written in a way that it still makes sense between the beginning and wherever the editors as yet unspecified word count comes into play, i.e. a random chop off of the bottom.

Sorry if grandma-suck-eggs etc.

Great stuff Star. Shall have a look at those tomorrow!

Two moments stand out in my career as a mother of two disabled children. The first was when my son was diagnosed and the letter went to school and no one bothered to send it to us (never mind asking our permission to share it with our son's school).
The second moment was when I was called to GOSH, told of my daughter's very serious diagnoses and somehow we were not told that my husband should attend.

Sorry all, didn't mean to make anyone cry, and re-reading my post it makes things seem much more hopeless than they are. Having each other is a damn good thing - I've learned more on here from a couple of weeks' furtive lurking than I have in a long time, you are all ace

The only other thing I think is important is this: again, from reading these boards for a fortnight, it's clear that none of us want anything more than the playing field levelled. A chance for our kids to have the same access - where cognitively appropriate - to the same reasonable floor standard of education as NT kids. There is no reason worthy of the name to feel guilty about that. If people in authority feel that we should feel guilty for wanting this, then the principle of comprehensive education in this country isn't just dead - it's been tarred, feathered, and set alight.

IE Yes, please feel free to use the post for yr blog. Maybe lose the "bastard" in the first bit though?

bjk I doubt that it's common practice for SEN teams to be rewarded this way. But I know from a couple of sources that it happens at senior management level in some London boroughs. One of these sources was a local professional, the other was a 'gamekeeper turned poacher' appeal adviser who used to work as a service manager in a SEN team.

Fairy God, that is truly, truly appalling. So was it a teacher who had to break the news about DS to you?

Hello Utter, the school assumed that I had the letter first and so mentioned it after some time in passing! The situation was such that my son was diagnosed with ASD at the age of three only for the diagnoses to be taken away three months later (that could be another GREAT moment actually, completely forgot about that one as he is now twelve). So few years later I called the CDC and said that he had not outgrown any of his symptoms/behaviours and would they re-assess him. So they had someone look through his file and send a letter to school with a diagnoses made from his file rather than an actual assessment.

You poor thing. I'm fuming on your behalf

That is terrible. Would you share the story with our information sharing campaign? You can do it anonymously. PM me.

No idea how to tweet but really pleased this is taking off, well done IE, hope you get an interested journo, raising the profile of what folks have to go through has to be a good thing

Thanks. Feel free to add any comments!!

Here's another one about institutional bullying:-

'I requested that my two grown-up children attended the Tribunal with me and husband as observers (they would not have been allowed to take part in the proceedings). I felt it important that they were there to not only provide moral support but to see what we were doing for their brother -their lives have been greatly impacted by his disabilities. The LA objected to them being present on the grounds that there would not be enough room. The Tribunal decided to uphold the LA's objection, so they will not be allowed to attend. However, the DPA material showed that the LA had emailed each other, looking for reasons to object. They had objected out of principal. Because they could. No humanity or awareness that a family in crisis might all want to be together to morally support each other'

Never allow yourself to trust a professional. My dd was dx with a speech disorder in 2011 and I only found out a few weeks ago when I requested all reports from salt to apply for SA :(

Senco at dds school was adamant I should not request SA, so I arranged a meeting with her and HT and presented them with all reports from salt, OT, physio and pead. Senco then asked for more time before she could comment. She phoned me a few days later saying when presented with all reports she feels dd does need a statement and the school are going to slowly begin to compile their evidence. At this point I informed her that I had sent off my req for SA the previous day. Within a few hours she phoned me again asking me to come in and meet with herself and lea EP. This meeting took 2 hours, with the EP explaining why dd won't get a statement and how I've made things worse by req SA :( considering she hasn't even met my dd at this point I asked her when she could assess dd. 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 SA when the EPs have no time to assess!
I left the meeting in tears :(

I'm so sorry armani. You won't shed tears at such meetings in the future. Your heart turns to stone.

If you have a moment you can write a letter to her boss explaining her accusation and requesting that if she has an issue with her working conditions or her time management in future then can they make sure that she please raises it with her line manager and not a client/service user. Include that you are have no power to improve her position and you are neither appropriately trained nor have the time to be her counsellor.

Also I forgot to add that the lea EPs recommendations from this meeting were for me to attend a parenting course! Of course dds behaviour has nothing to do with her frustration regarding her needs not being met. She isn't lashing out and calling herself stupid, ripping up work and screaming she wants to die, because of frustration caused by lack of provision, it's because I'm a shit parent :(

What an absolute disgrace! You have done the right thing. Like they say 'if they are shooting at you, you must be doing something right'

What an appalling way to be treated.

Has this SLT continued to see your child? What did she say when she assessed your child? Is there any explanation for why she did not tell you about this diagnosis?

Are you happy for me to put the story on my blog? I can send you the link if you PM me so you can see what it looks like.

I am so sorry you have had to go through this,

Yes the salt who diagnosed dd was involved again when she was referred back by school for the second time last year. She simply discharged her due to dds attention skills being immature. Dd 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 salt assessments and I was not once informed that my dd had a speech disorder, I was just told she needed a bit of therapy to work on her clarity!
The worse thing is my dd is now being investigated by pead for possible brain damage resulting in CP. the speech disorder that my dd has been dx with is a classic sign of CP. If I had been informed of this diagnosis in 2011 when it was made, it may have helped to get a referral to pead for possible CP!
I just feel so let down by the school, salt, eps involved :(
IE yes I'm more than happy for you to include my story, I will pm you.

Did they share the diagnosis with school?

You should complain to the HPC about the SLT. My experience is complaining to PALS is a waste of time as the hospital will just sit on you and drag a complaint out and then you will have to go to the PHSO.

Goodness that reminds me of about 5 years ago. Son was in an sen nursery. Paed agreed he needed a multi disciplinary assessment and said he would contact the sen nursery. Next thing I know I was in the school doing some sibling thing with his sister when the salt came marching up to me in the corridor in full view if everyone saying that she had contacted the pass and told him a multi disciplinary assessment not needed and that was the end of that. Few weeks later meeting at nursery about my son, teacher put it in writing my son did not have asd, salt entered halfway through meeting to out her boot in and have me her report during the meeting and they then booted hi out of the sen nursery. He then started mainstream school with no support or dx. He was then just 2 years later when we moved to a new area dx with asd and ADHD and then now he is in an asd independent school so clearly he was and always was asd. In fact when he finally went through assessment the psych said that if he had been assessed back at age 4 he would have been dx as everything was there. I've now moved back to the area where we first lived and I hope and pray one day my path crosses with the salt. I do see the teachers but when they see me they just put their heads down and ignore me. As I've been through tribunal I honestly believe these staff from the sen nursery (which would later close) who would go on to get jobs within the LA are still spreading their poison that there is nothing wrong with my son. Makes sense now with the sen officer making comment to the tribunal that they accept his dx of asd as though for some reason they didn't have to. One of my regrets was that I never complained all those years ago

School claim they do have a copy of the report which states diagnosis, although they appear to have never read it as they haven't taken the diagnosis into consideration at all with regards to dds learning.
When I read the report a few weeks ago, I questioned dds class teacher if she knew about the diagnosis. She became very defensive and claimed she didn't know the name of the disorder but was aware of dds problems.
I then asked why an EP wasn't bought in when the diagnosis was made, as it was clear from the diagnosis that my dd wasn't going to be able to learn phonetically! She replied that that's what they are doing now - 2 years later!

It enrages me to know that the salt diagnosed dd and then discharged her, leaving her in a ms school with no provision or appropriate ways of teaching! And now the school are wondering why dd has not made any progress in two years! But I should still not apply for SA!

Outrageous both of you. I am so sorry.

Armani How dare the SLT share with school and not you. That is a gross breach of professional ethics.

Have you got the school file? I would request a copy now to see when school were told.

Do please help with our campaign by PMing me. I have put your comments on the blog.

None of the above stories shock me anymore. Sorry, but true.

My thoughts are:

'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.'

This is what I'd tell someone starting on the path.

Thanks - have added them

bumping for more views

Another one for the literature buffs.

“Over a half century ago, while I was still a child, I recall hearing a number of old people offer the following explanation for the great disasters that had befallen Russia: "Men have forgotten God; that's why all this has happened." Since then I have spent well-nigh 50 years working on the history of our revolution; in the process I have read hundreds of books, collected hundreds of personal testimonies, and have already contributed eight volumes of my own toward the effort of clearing away the rubble left by that upheaval. But if I were asked today to formulate as concisely as possible the main cause of the ruinous revolution that swallowed up some 60 million of our people, I could not put it more accurately than to repeat: "Men have forgotten God; that's why all this has happened.”

Alyeksandr Solzhenitsyn, the Templeton Address.

You are fancy!