Five years into our journey with the failing SEND system and I would have thought things would have improved by now. Scarily so, I feel even more victimised by those working in it, despite my developed knowledge on how it operates.
In 2016, I entered it naively, apologetically and ready to be made a scapegoat by those soon to set their eyes upon me. I knew no different and had to learn fast that I was not the real problem behind my eldest daughter’s behaviour.
With the assistance of this blog, campaigns and getting an EDM in motion with my local MP. Then, being invited to speak to local groups, run a support group for other parents and speak at national conferences. Suddenly the narrative had changed; I was starting to be treated as the expert on my child and the opinions I formulated were considered more withstanding.
A powerful voice advocating for the SEND community is something that some people wish to avoid.
With the merry go round of professionals that come into and out of our lives, that dynamic can soon change. Added to the situation, the emergence of needs from siblings (this being their own individual make up and the environment that they live in unsupported), suddenly we have been catapulted into uncharted waters once again.
It only takes *a few* of them to formulate some opinions on your situation and it can be cast in stone. Views, with no factual evidence, but simply created on bias.
When they make claims YOU create the problems in your children, that you seek diagnoses for children who are fine. That YOU are the source of anxiety on the playground and begin documenting observations on you. Nor do you have any idea of their findings because you are trying to nurture your children and support them through the morning distress as those views are being made. Unaware that a silent wall of judgment will end up adding to the problems that both you and your children pick up on.
Out of the blue they want details of the children’s father despite knowing that contact had been cut. They are moving forwards with their tactical play.
Then they document claims you are intimidating, you have controlling behaviour, professionals are frightened to work with you. They claim you name and shame people on your blog. They add random claims to the campaign now, like you allow your children to call their grandfather ‘Daddy’ and they are uncomfortable with that. They’ll add anything into the mix now because you are being witch hunted and not for one moment supported.
Their strategies widen.
They bring attendees to meetings you have never heard of and say they are here to offer support. You start to have a gut feeling they are gathering ranks and these professionals are not adding solutions but unmute themselves when you question any issues. These are the professionals they bring in when they put cases together that the child would be better off elsewhere.
You try to remain calm, not to react emotionally or they will continue writing that they have concerns over your ‘emotional well-being.’
You get wind that they were bringing all professionals together to pull a meeting together to discuss their concerns that you are the issue here in this family. You request an agenda and evidence of those claims but they ignore you.
Your voice is slowly being etched away. That strong, powerful voice you knew how to use, is being silenced.
Their tactics are working.
As a parent who had knowledge in the field they are tactically disarming me.
Professional gaslighting happens far too often for vulnerable families like mine.
It rips us apart. It makes us frightened to even ask for help at the start.
I’m so indebted to The Nurture Programme for holding my hand and listening to me cry. I am so grateful that they have supported me and made me feel like I can get through this once again.
It shouldn’t be like this.
If you are another parent going through this, please know you are not alone.
So sad to read, and sounds very familiar! You are far far more active in the fight for PDA awareness than my wife and I and you are a credit to your family. We have been fighting for 3 years to have an ADHD diagnosis overturned. Our son has been to Help4psycology in 2018 who assessed our son as ASD / PDA. The meetings on meetings with local NHS board in Wales are energy sapping and the lies are un believable some times. They will not “be strong armed into changing a diagnosis by parents” was one line….. um not it’s by Dr Judy Eaton and team who are all qualified not only that when it comes to our son we actually are the expert!!
Keep strong will be thinking and remembering you in my prayers.
God bless
T&C
X
Thank you Tom and I hope you can find a way to get his diagnosis recognised. I want to say I’m shocked reading that but sadly it’s become the norm. I appreciate the support too. Keep ploughing away, that’s illegal what they are doing. Dr Judy Eaton is recognised by all other local authorities as a reputable clinician. You’ve got this 👍x
I read this in horror and disbelief. Having known everything you have all been through this past 6+ years, the rollercoaster of emotions, the fight for someone to listen, to be on your side, the elation when you finally got a successful placement for your eldest daughter only to have that ripped away….these people could not be more wrong. They have NO idea of the sacrifices you have all made and the adaptations YOU have had to make to allow your family to have a ‘normal’ life given the lack of support elsewhere. I am disgusted. I know it’s hard, I know you’re exhausted, I know they keep knocking you back to the bottom of the mountain but you have come SO far and you’re climbing that mountain for so many people, keep that fight. YOU have done NOTHING wrong except love your family!! 💕
Thank you Tracey, from the bottom of my heart, you have been an amazing support. Much love ❤️
I have read this with a sickening feeling growing in the pit of my stomach. You are someone that I look to, someone that I know has been fighting for so long. You know more about PDA than I can ever hope to. The thought that you are going through this is sickening. We are currently fighting for our son. He is about to enter Year 11, still having had no senior school education. A2E are now fighting for us and have put together a package of education – not really their remit. The LA are now looking to post 16. Our son is now suffering with agoraphobia and can we get help? NO!!! He barely leaves his room. Anyway, that’s our battle, you have your own to deal with. Trust yourself, you can do this.
Oh Lyn, I’m so sorry to hear where you are currently, I knew only too well the difficult journey you’ve had to here. I think we are equal in our knowledge and journeys to date. I hope you can push through their antics to provide the support he truly needs. Much love ❤️ xx
Sadly because covid I can’t do my hobby 😦