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Here are some suggested organisations that offer expert advice on special needs.

Do you remember?

13 replies

DebsKent · 23/03/2011 18:55

Do you remember that day? The day you heard? The day your child was given a label? The day your life was turned upside down?

Do you remember thinking your heart would never feel this much pain again? Do you remember thinking your heart would never be able to feel this much pain again and actually survive?

Do you remember making that first call to family or friends to tell them your news? Do you remember hearing that shock and pain in their voice? Do you remember thinking they sounded disappointed ? just a little bit but you?re sure you heard it?

Do you remember looking at your partner and thinking ?do they blame me??

Do you remember thinking it would never be as bad as this ever again?

Do you remember sitting with your child being sedated just to have a stomach ultrasound? Do you remember telling a junior doctor about your child?s condition because you know more than most now?

Do you remember sitting outside operating theatres? Do you remember looking for the doctor after the operation? Do you remember seeing that look that said ?we tried ...??

Do you remember bartering with a God you?ve always claimed not to believe in? Do you remember the amazing things you were going to do as long as your child came through the operation?

Do you remember thinking it would never be as bad as this ever again?

Do you remember the first nursery that turned you away without funding? Do you remember being turned down when you applied for the funding?
Do you remember the first time you appealed against a decision? Do you remember waiting for the letter to come? Only for it to contain bad news?

Do you remember every muscle in your body struggling to keep you upright? Do you remember wanting to burst into tears but your child was watching you?

Do you remember thinking it would never be as bad as this ever again?

Do you remember the first time that a stranger realised your child was different? Do you remember that look of pity? Do you remember that look of contempt as though you were to blame? Do you remember feeling judged?

Do you remember that first public meltdown? Do you remember those people just stopping to stare? Do you remember wanting to just break down and cry? Do you remember being kicked and punched by your child due to their distress?

Do you remember those people talking loudly nearby? Do you remember their comments about bad parents? Do you remember their comments about naughty children?

Do you remember thinking it would never be as bad as this ever again?

Do you remember hearing your child needed a statement? Do you remember everyone telling you how difficult it was to get a good one? Do you remember all those assessments? Do you remember repeating your child?s history to several professionals? Do you remember having to focus on all that your child cannot do? Do you remember feeling like you were betraying your child by talking about them like that?

Do you remember thinking it would never be as bad as this ever again?

Do you remember hearing that children like yours are more likely to be abused? Do you remember thinking that would never happen to your child? Do you remember the first time you heard allegations had been made at your child?s school? Do you remember being told that the police were involved?

Do you remember realising that your child had never been told about abuse? Do you remember realising you had never taught your child how to report abuse? Do you remember thinking you had let your child down?
Do you remember hearing that no one had seen the alleged abuse? Do you remember asking ?what about the child ? surely they saw it??

Do you remember thinking it would never be as bad as this ever again?

Do you remember the day you were told that allegations were ?unproven?? Do you remember the day you were told they were reinstating the staff immediately? Do you remember keeping your child home? Do you remember feeling so useless because it was all about politics and not the children?

And tonight, as I write this, I am thinking it can never be as bad as this ever again. Sadly, I now know from experience, that it will.

OP posts:
Chundle · 23/03/2011 20:11

thats very sad - makes us realise how vulnerable our special children are

MADABOUTTHEBOY2000 · 24/03/2011 17:12

im so so sorry thats an awful story i say story not really the right word because its obviously YOUR story and quite harrowing one too, and yes we all are here with you we all know these things will continue out of ignorance and an uncaring world to anyone that wont fit into their round holes that cannot conform to their ways , writen in stone apparently never to be moved or changed altered in any way specifically SET to make our lives and our DC's lives as awkward and as painful as possible, or so it often seems.

TotalChaos · 24/03/2011 17:32

Sounds like you and your family have had a dreadful time, I am so sorry.

showers · 24/03/2011 22:15

Yes!!! I remember nearly all of those things aswell too!! Having our very special children does makes us stronger and we will fight against those who are ignorant, those who dont want to educate our children and basically everyone who gets in our way whilst we are trying to bring up our special children to be happy and have a fulfilling life.I know that allthough i often feel like giving up fighting against these things, I never will!! I feel so proud and privalidged to be a mum to my special child!!

bullet234 · 24/03/2011 22:22

It sounds as though your child and you have indeed had a dreadful time.

bochead · 25/03/2011 07:18

Far too much of this resonates deeply. This should be on the front page of the Mumsnet guide for special needs. It should also be published far and wide.

NorthernSky · 25/03/2011 07:39

This reply has been deleted

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DebsKent · 25/03/2011 09:22

Thanks everyone, this is a harrowing journey for us but sadly I know we are not alone. Having taken the decision to look at other special schools, I am hearing the same story from parents with children in those schools.

This is not acceptable and I am so angry that with all the legislation in place that is supposed to protect our children that this is still going on!

I have started a campaign group on fb if any of you want to join - we need 50k members so that we can petition the governement to address this. We want training and communication aids for our children so they can recognise and report abuse in a manner that is given instant credibility. Once these professionals know that our children have a voice, they may think twice about abusing them in any way!

www.facebook.com/home.php#!/home.php?sk=group_120254334716379&notif_t=group_activity

Thanks for all your support. Please keep the word going as we need to stand united and stop this.

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proudmum74 · 25/03/2011 10:34

DebsKent, this is the most harrowing thing I have ever read, I am so sorry you and your family are going through this.

Like others, a lot of this sounded far too familiar for comfort.

DebsKent · 25/03/2011 11:12

Hi Proudmum74, feel free to join our facebook campaign to add your support to stop this.

We have to fight so much for our children, we should not have to fight for their basic human rights xx

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r3dh3d · 25/03/2011 12:16

Ach. Yes, too close for comfort, and for too many of us.

Though, sadly, there is no amount of support that would render DD1 capable of reporting abuse. And I have never thought "it will never ever be this bad again". I have always thought that it can only get worse and we need to make the best of now, because we will look back and these were her glory days.

tryingtokeepintune · 25/03/2011 14:22

DebsKent,

That is terrible and sad.

What is the facebook group again?

DebsKent · 25/03/2011 14:38

www.facebook.com/?ref=logo#!/home.php?sk=group_120254334716379&id=120398054702007&notif_t=like

Or search groups "Parents of Disabled Children Unite..."

tryingtokeepintune, please spread the word about this group - together we can make a big noise and ensure our children receive the care, support and respect they deserve x

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