If only people had listenedPosted May 5, 2021
My school life was very erratic let’s say.
I attended all my infant school years and the staff there were incredible and very supportive, some of which I still have contact with to this day! I wasn’t diagnosed at this point as my difficulties were all down as psychological, but I did have my PEG feeding tube (percutaneous endoscopic gastrostomy) and the headteacher used to give me my bolus feed at lunchtime.I missed out on a lot of my primary schooling so only attended about two out of the four years, and during this time is when I was diagnosed with gut dysmotility and some other issues. The teachers were terrible and I received zero support during my time at this school and was left to fall behind even more and struggle massively.
My secondary school life was basically non-existent. I attended the first one and a half years before I had to drop out due to a decline in my health. I began homeschooling but my home tutor (who I must say was absolutely incredible, and I’m lucky to now consider her a family friend) only received six hours a week funding from the council: my health was too poor to even fulfill the six hours and this consisted of only Maths, English and occasionally Science. After only a short time of tutoring me, she knew what I could and couldn’t manage and there were days where I was too unwell and had the worst brain fog, and we would have to end the session soon after starting.
After a while, I started going into school for one lesson every few days but after a more rapid decline in my health that had to stop. I did not complete any final exams after years of them being withdrawn, one by one, to the point where I was left with nothing. The staff at this school were very much focused on attendance percentage and performance, which I couldn’t live up to.
I feel strongly that if people had listened years ago and realized that I wouldn’t have been able to manage the same as my peers, then things would be very different.
Now I am currently in no form of education as college refused to accept me due to my health and because of how much time I was spending in the hospital. Despite fighting tooth and nail throughout my whole school life, I never qualified for an Educational Health Care Plan (EHCP) as my condition didn’t “tick the box.”
I feel so unbelievably let down by the education system and have well and truly fallen through the cracks of society as no one has tried to help me to get the education I am legally entitled to up until I’m 19 years old. My mum and I have continued to fight for my right to an education but with no success after meeting with the MP who seemed to want to help, but then Covid-19 hit and any help ceased.
I would like to further my education in the future but for now, my primary focus is getting my health to a more stable position so that I can pursue this.Tags: feeding tube, hEDS, school
Categorized in: Stories