Hi I would like to introduce myself as one the the admins for Action 4 SEND. My name is Nikki and I live in Poole, Dorset.
I am a mum of three – a daughter aged 16 in mainstream, who has needed support with mental health difficulties; a son aged 14 who is diagnosed ASD, including Asperger’s & PDD and also has ADHD, hypermobility, a sound sensitivity and PDA traits. He has an EHCP and attends an ASD special school. I also have another son aged 12 years who has just been diagnosed with dyspraxia and we are awaiting a professional diagnosis of autism… however our son and we as his parents know he is autistic. As a result of my children’s journey I realised that I am also autistic and have ADD.
I have had to fight for all my children to be supported in school. The biggest fight was for my son’s diagnosis as he was forced to attend his first school on a ‘behaviour plan’ and labelled a naughty boy! I then had to fight for his EHCP assessment and fight again for him to attend a special school. I have had to fight for the right to be listened to and my views respected. I have been ignored, gaslighted and bullied by professionals and even bullied and threatened by other parents during my journey. I’ve lost friends along the way too and felt isolated, alone and without support.
Because our son was refused an early diagnosis and early intervention I trained at night school to be a teaching assistant so that I could help and support my own child as no help or advice was offered or given. We survived our home being trashed and physical assaults until we equipped ourselves as parents with the knowledge and understanding to be able to meet our son’s needs. We’ve attended every parenting course from Early Bird, to Parenting the Senses and Autism Wessex’s Understanding Autism for Parents, plus many courses I’ve done through my jobs or online in my own time. It’s been a long path of discovery and learning but my lightbulb moment was acknowledging that all behaviour is communication! I’ve since gone on specialise in speech & communication (I’m ELKLAN trained), autism, ADHD, behaviour and mental health and I’ve used my training and knowledge to help other SEND young people and signpost other parents. I have experience of working in a special school as a TA and HLTA. This year I qualified as an assistant SENCo and I absolutely loved working with my SEND students and gave them 100%. However due to the impact on my own mental and physical health of trying to hold down a full-time job while supporting my own children (I was diagnosed with fibromyalgia six years ago) I left my job working with AP and Post-16 SEND students to take some time out to focus on my own children last May.
I also have experience of the care system as I was fostered as a child and have some understanding of the implications of young people being sent to live in an area miles away from their families. How sad that nothing has changed in 40 years!! This needs to change too.
I am presently co-chair of our local parent carer forum – Parent Carers Together and we are working hard to facilitate co-production between parents and our LA, the CCG (health) and Social Care to join in as we are trying so hard to ensure accountability, transparency and effective SEND provision is on the agenda at meetings.
I am also one of two admins/coordinators for the local FB branch of the National SEND Crisis Group – our FB group is known as BCP/Dorset National SEND Crisis. (We have two LAs in Dorset as a county – BCP which covers Bournemouth, Christchurch & Poole and also Dorset which is a separate LA).
I previously worked as a disabled diving instructor and as a journalist – including deputy editor of a newspaper and sub editor of an international magazine. It was my journalism and SEND background that struck a chord with me when Jenny announced her Action 4 SEND initiative to write a book and this is why I wanted to get involved and help to collate all our SEND experiences. I am angry and frustrated at the length of time everything takes and I want to help because I don’t want other families to go through what we have been through.
We need you to write about the challenges and difficulties you have faced and the impact it has had on you, your family and most importantly your SEND children. These will go in a book and together we will take our book and share it with both Downing Street and Parliament and go public via the media. We will be heard!
We are doing this for the future of all our SEND children and would be very grateful if you would also join Action 4 SEND on Facebook and send your stories to: firstname.lastname@example.org or simply share what we are trying to do, thank you.
It’s time we told the world what is really going on and what we as parents and carers have to do to try to get any help or support for our young people in a failing SEND system which is chronically underfunded by central government and very badly managed and unsupported with no accountability.
If this doesn’t apply to you specifically, please pass it on – I guarantee another of your family members is also perhaps quietly fighting their own fight for their SEND children. They need to be heard – they need your support. For too long we have been in the shadows quietly trying to make a difference but enough is enough and our fight affects not only families with SEND young people but those without because the finances involved impact all schools and all children.
Join forces with us – together our voice is louder. Thank you for reading Nikki Jacques.
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