So not sure where to begin but the last, forever, has been working with many many agencies and social work teams to get them to pull together a plan to support not only Reed but the family holistically.
From what I have experienced this has been arduous, dementing and completely counter productive. But in the last month I may be getting somewhere close to finding a sustainable resolution to support the Education, Health and social care for Reed and the rest of us.
It has been at a cost, not just financial but an emotional cost. For as long as the county has been procrastinating and Reed behaviour getting increasingly challenging my capacity to function has been impaired, nursery has reduced its hours to ensure the safety of the other children and I have had to close my business with immediate effect to name just a few.
Only when everything has broken down and the impending legal review that I have instructed is starting to evoke some action.
Reed is incredibly complex and his needs surpass the understanding of the majority (including me!). For most with more formal diagnosis there is an expected tragectory of learning, development even if this is a spectrum, there is a way of researching and applying strategies and related professionals to offer guidance and support. Reed does not fit into any physical or metaphorical box. He is truly unique and this is very isolating when dealing with professionals who are struggling to understand the complexity too.
There is regularly a misunderstanding that Reed will be triggered to behave in a certain way and that if we change our behaviour and identify and remove triggers that he will somehow become manageable. Due to his significant brain injury and brain dysfunction this is an element of supporting Reed. The way to support Reed is to have a constant and close support worker/parent within reaching distance of Reed during his waking hours. This is the ONLY way to stop injury and damage. His behaviour is extreme, unpredictable and mostly (bar normal sibling rivalry stuff) unprovoked with no understanding of consequence. This information has been shared and every setting, bar home, Reed requires more than 1:1 care. What I have been working to prove is that this should be extended to the home. I even MASH referred my family to get them to understand the impact of behaviours that I am struggling to support.
So after months of emailing, taking my concerns to increasingly higher level workers within DCC and a privately funded judicial review there maybe a glimpse of action.
Education have allocated a place, at The SEN school of our choice part time from April and then full time from September.
Health have identified their plan, which I am not sure I agree with but will reserve judgement but will continue to apply the pressure on.
Social care are finally opening their ears to utilising the evidence shared with them to pull together and fund a plan to support the needs of the family. And not dissimilar to Reed beginning to understand consequence if they do not ACT.
See loads of people assess and listen to the struggle but there is little or no Action taken on the advice. E.g. Reed needs a behavioural management plan to be used to provide consistency in all settings, which I fully agree with but then you ask who is going to be responsible to create, implement and review this there is radio silence.
As a SEN mummy you are not just a mum, but project manager, behavioural support worker, education lead, risk manager, negotiator, financial planner, cook, cleaner, handyperson, advocate, social worker, medical professional, researcher, contingency planner to name a few which is emotionally and physically exhausting all the while you are expected to wash and dress well, be emotionally secure and under complete control so not to appear like a raving lunatic in meetings and through email correspondence!
I am off to lie down (oh wait that’s not an option, I will just close my eyes periodically and dream about lying down!) before I start the fight again on Monday!
Stay strong SEN parents the fight is worth it. X x