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Diagnosis and Discharge... on the same day?

By Carolyn Whitehead

Most of you who know me, whether from sessions or on here, know of our journey with Jess, my middle child. She’s 12 now, and has just had a diagnosis of ASD, which sits nicely alongside the diagnosis of ADHD, Dyslexia and Dyscalculia which also results in a ton of anxiety. If you know the system, you’ll know how long it’s taken to firstly, get someone to take us seriously enough to complete the paperwork and secondly, how long we’ve waited in ‘the system,’ to get any sort of support.

This isn’t an NHS bashing post by any means, we have certainly had our moneys worth out of our taxpayers money over the past few years, not just from community paeds, from CAMHS (when we finally got there) from A&E due to the constant tonsillitis which plagues her as her bodies under constant stress and overwhelm, from broken bones - not her, the youngest, from ophthalmology - both of the oldest, from neurology for Jess, from ENT both Jess and Harry, literally the list of professionals we’ve accessed over the past few years is pretty extensive. I know how lucky we are to have our NHS, and I know how lucky we are to have Alder Hey literally on our doorstep, and mostly, I feel hugely lucky to have some knowledge on how to navigate this system and the world of SEND.

Taking things back a couple of years, I was working as an Early Years Teacher in reception, I worked for 11 years and this is where I gained my SEND wings I suppose, and my love of parental support. I knew that if we supported parents in their understanding of the curriculum, and of child development, then families could thrive. I saw children come into reception with such a range of difficulties and challenges and we were always told that ‘early intervention was key.’ It was key to issues not spiralling, it was key in children being able to access the curriculum and the gaps not widen, it was key in supporting the family, it was key in ensuring that child’s needs were well met in the classroom setting and in us as professionals being able to access the support needed to best support that individual. Back 11 years ago, early intervention was unlikely, with children struggling until year one to access professional support. It was around 9 years into teaching I completed my SENDCo qualification and it was around this time I moved into a specialist provision set up in a mainstream school to support those children who were unable to access the curriculum in a larger group setting but didn’t qualify for specialist provision because they were waiting for professional reports, observations and essentially, they were ‘stuck in the system.’ 11 years ago this ‘stuck in the system,’ existed, 6 years ago, ‘stuck in the system existed,’ COVID happened and the system all but stopped for many of our children and families who have additional needs or disability. What we see today is a result of years of system failure, of underfunding and cuts, and the mental health pandemic we see in both our parents and our children and young people struggling with poor mental health is due to a severe lack in resource and timely intervention, and a direct result of being ‘stuck in a system,’ with no support in the meantime.

I feel like one of the lucky parents a lot of the time, because I know enough about SEND to be able to put strategies in place for my children which for the most part allow them to thrive. I feel lucky that I know the language, the terminology, the right doors to press, that I have enough of a ‘fight,’ in me to push for support. I feel lucky I have the ability to fill in the endless paperwork, the energy to attend the endless meetings and make the endless phone calls and I feel lucky that I have the knowledge to be able to research, the confidence to ask for help and the strength of character to know that our children’s struggles are not a result of my ‘bad parenting, soft parenting, lack of parenting knowledge, or that I have let them get away with things previous parents wouldn’t have put up with.’ BUT even with all of this knowledge, education and resilience, there are days when I cry, and shout about the unfairness of the world for our neurodiverse families and children. There are days when I don’t think I can go again, there are days when I don’t want to focus constantly on my children’s weaknesses, their ‘disabilities,’ their anxieties and what their ‘worst day,’ looks like. There are days when I don’t want to plan and make routines, and deal with the fallout when those routines change beyond your power, it’s exhausting, its hard and its often relentless. The words spoken by all parents after a rant like this are spoken by me too… but I absolutely love my children and I wouldn’t change them for the world.

So last week, Jess had her diagnosis of ASD, following a 2 year referral process - the previous diagnosis had come much more quickly, at a cost of private medical bills -another story for another day - and it came as such a shock to me. Don’t get me wrong, I knew in my heart of hearts, I’d pushed for this diagnosis, and thought this a possibility more so than the ADHD diagnosis, however, I still cried. It was a shock to hear that other professionals had agreed she met the criteria, it was a shock to hear others saw what I saw even though in my opinion she’d masked so much during the assessment session and it was hard to read the report and recommendations. What hit home more than anything was the end of the meeting.

It went a little like this…

‘Have you any questions about the report or anything you’d like clarifying?’

‘No - I don’t think so,’

‘Ok well I’ll send out the official paperwork which confirms the diagnosis in the next few weeks and with that there’ll be some links to some services you can access for further support as well as a link for Jess to join a programme which explains her diagnosis if she feels its appropriate.’

‘Oh, ok thank you..’

‘Thanks for your time today bye…’ END OF MEETING

Wow… in what other service are we ever diagnosed and discharged on the same day? Our families deserve and need so much more as do our children…

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