SEN Parent Support Group Journal
By Andrea Dixon-Boldy
A new day, a new beginning – a chance to start again! That’s what parents say to themselves to bring about a positive start to the day! Why, because we have foresight and hope! A child’s perspective is very different, you see when they open their eyes each morning, none of that happens because quite often they don’t have the developed cognition to see past the now or the yesterday and the fear that the previous day brought!
So, to them nothing changes! It’s ’Groundhog Day’ every day until it’s simply not. It’s another day to fear, procrastinate, to doubt and to feel inferior to their peers and the whole world, upon each 24-hr daily cycle.
It’s another day to be called names, teased, bullied and to be misunderstood or simply not understood at all! It’s another day to self doubt, struggle, remain as regulated as their little selves can control, it’s another day to mask!
When in primary school, my beautiful boy, he’d finish the day and come out looking sombre, having refused to do his work, and often he would say to me “Miss X said it’s okay, because tomorrow we can start again – it’s a new day”! For a while that worked, he’d play in the garden put his woe’s to one side and continue to be a child relative to his age – he’d laugh, play and be mischievous with a capital M. Then at night time he couldn’t sleep due to anxiety of the day to come and then when he did, he’d have up to 4-night terror episodes night after night, these lasted for years.
I often look back and cry and even grieve for the boy that I thought was happy, resilient and ‘mature’ for his years. I’d cry for the boy with ‘unidentified unmet needs’ that the teaching profession ignored.
Fast forward another year and he would come out of school and not say a word, simply the look on his face told me everything I needed to know in that moment. As his heart broke mine did too. Teachers would tell me he’s not had a ‘good day’. He wore the look of shame, although my boy had nothing to feel ashamed about in context, he struggled to write but no one picked up on that because he learned very quickly that he could deflect, distract and refuse or ultimately get sent out of class which took him away from feeling the shame because he couldn’t do what others found easy! What didn’t I see, what wasn’t I told and more importantly what was the emotional damage that was being laid bare for my boy to soak up! I now know that budget has a lot to do with lack of exploration within the teaching profession, not the exploratory assessments but of course the allocation of the notional budget! Actually identifying SEN is one thing but to then have to financially account for it within the schools budget is another!
At the ripe old age of 7/8 he didn’t have the cognitive skills to rationale or to understand what he was doing, he was communicating his confusion, his feelings by means of Fight, Flight, Freeze & Fawning – the Four F’s of Anxiety! We both at this time thought that the Teachers knew best, right? Mum always says “listen to the teachers” so of course he knows they must be right! This for sure must have been the catalyst for his self depletion in terms of self-confidence and self-esteem.
School reports would typically read that he was capable, talks too much, disruptive and needs to ‘apply himself’ – all of which suggest that it’s ‘his choice’ to ‘talk and be disruptive’. Right? Wrong? These were his presentation but not his choice! They looked no further and labelled him defiant, probably even spoilt!
Sadly, as time goes by the ‘label’ spreads through the teaching professionals and a kind of self-prophecy becomes prevalent. I look back and feel that he must have repeated the same shame, feelings and trauma each day for all of his primary years – Groundhog Day.
Over the primary years, what the school reports didn’t say was that your child displays traits of being on the spectrum and has sensory issues and is unable to write for long periods, due to possessing no tension in his thumb tendon to support the actual pen! So, no referral for intervention was made and as a parent who had limited knowledge I didn’t know how to progress this, I had no experience of what constitutes enough ‘evidence’ to refer, I was blind and ignorant. I didn’t even know that those observations were ASD traits, I just saw a mischievous quirky, loving, curious boy who was fiercely loyal and protective of his loved ones.
Believe me when I say this, I DO NOW! There is not much that I do not know now regarding SEND and its all in the name of my child and in the name of yours! I will not let the system break any more children whilst I still have breath in my body!
For my boy each Groundhog Day repeated itself until my sweet boy became depressed which in turn developed into panic disorder and separation anxiety. It was at this point that I sought help from the GP who referred us to CAMHS.
The sad thing here alongside the light no longer shining from my boy’s bright eye’s, was that this referral was set with its own set of barriers and hardship: known as the ‘system’ and with that, came a long waiting game. 3yrs later he was diagnosed with ASD, Separation Anxiety and Panic Disorder. The damage was done, embedded and was progressively getting worse day by day!
Whilst reflecting on this I realised a pivotal point for me, which I am sure so many of you will be able to relate to, was one Friday morning when I was out doing a food shop, a task that I knew would be impossible when my little one got home. It was 11 am when my phone buzzed and it was his teacher. I remember this like it was yesterday:
Isle 3 – “hello, I believe your boy maybe on the spectrum so I’m referring for assessment”.
Years of battling, trying to communicate his differences to a school who knew his differences but didn’t progress! I fell to the floor and cried mainly with relief that someone had eventually ‘listened’ and I was overwhelmed with sadness, sadness for my boy because it had taken them until 6months prior to the transition to year 7 to do this!!
As founder of SEN Parent Support Group, I hear similar stories daily in group – saying that Primary Schools are doing their utmost to delay support, thus passing it onto High School. Sadly, like my boy, the damage is already done! This was the key reason for setting this group up because damage can be PREVENTED, trauma can be PREVENTED if SEN is acknowledged, supported and addressed.
Via our CAMHS referral we received support for separation anxiety and ultimately medicated after 2 years for panic disorder and anxiety, at the same time we received his ASD diagnosis. This is a total of 5 years within the NHS system.
High school was toughest on my boy and fed his demons daily via professional ignorance, bullying and sheer lack of support. He tried so very hard, all of the time. I was met at meetings with “your boy isn’t ‘bad’ enough to receive an EHCP or diagnosis” – until we did! “We have far ‘worse’ children who have been rejected for EHCP”, “Maybe he would be better suited to a different school” – off rolling at its best, which of course is illegal! “It’s his perception, he cannot choose when and where and how he does things because he is not disabled” – well he can, it states as much in his EHCP! “He is choosing to not write” – No he has hypermobility! “He is choosing to be defiant” – No, he is struggling and tasks need to be broken down! I can’t actually repeat my feedback because it would not make clean reading BUT imagine, just imagine for a moment, how that impacted him, his self-perception and his confidence. I refer to this as my boy is Autistic but the co-morbid diagnosis of severe anxiety and panic disorder where as a direct result of school!
In y9 I successfully secured an EHCP, I had no knowledge of how these things worked but I had hope, hope for his future and differentiated provision. I learned that it doesn’t matter how hard we work to provide the correct environment from the EHCP if the EHCP isn’t quantified and specific and doesn’t work to SMART principals (SPECIFIC – MEASURABLE – ACHIEVABLE – REALISTIC – TIMELY) then it is a waste of paper!
If your child, on the face of it is ‘high functioning’ or able to ‘mask’ their difficulties, then it doesn’t matter what accommodations are made, subjectivity, discrimination and personal views of the Teaching professionals take precedence, which serve only to further damage your child and their education! It’s so very wrong! I commenced reassessment and revamped his EHCP, a separate battle in itself with input from SALT and OT! He had SLCN and Hypermobility.
In September, at the start of year 10 his ‘trusted’ TA’s and teachers refused to scribe for him and this happened twice in the first two weeks. We had both achieved boiling point, he couldn’t take anymore and I was not prepared to let him struggle further. He was in complete shutdown, suicidal tendencies and bedroom bound. No more, absolutely no more – it had to stop. He did not return. I was going to do what I could do to ensure he received his education in the home, and that the school were made to “pay” for their incompetence.
This by no means was the end of our journey with CAMHS, school or the LA. I pursued EOTAS at early AR which was agreed by all. What the la didn’t agree to was SALT and therapy, plus without a QTS delivering his education how was my boy supposed to access EOTAS at home to achieve GCSE’s? So, we progressed to tribunal, to ensure that the EOTAS package reflected every need and covered every angle. We won, it did, and it is continuing to do so at 19 years of age. Remember the comment “your boy isn’t ‘bad’ enough” for an EHCP? Well, he was never bad, he was always good, he literally just needed support, I achieved more than just an EHCP, he got a robust package delivered by a QTS and is doing absolutely grand on the academic side. It was however 2 whole years of decompression before he could access his EOTAS but I wasn’t about to pressure him because he needed this time. As for the school, before we officially received the tribunal decision, they purchased all of his OT equipment to be utilised within the home, including a resistant bike and pay they did!
His future is still to be written but rest assured, it’s not written off!
Keep fighting, take time to reset, refocus and knowledge up! This is where we come in, SEN Parent Support Group are here to support you and your child so that no other child or YP has to struggle like we did back then.
Let us “navigate the journey with you to reach better outcomes TOGETHER!”
