When you have a child with high-functioning autism.
During our recent battle to get the services to which PanKwake is entitled but is being denied because of Islington council’s continued bias against families who exercise their right to LEGALLY home educate their children, the Team Manager who was supposed to represent our views to this SECRET panel was out sick during their crucial meeting. As a result they sent us an insulting ‘offer’ that steps over the line into out right bribery. To whom I would say…
There are no sick days when you are PanKwake’s Mom.
After a month of lies, deception and having our legal right to CONFIDENTIALITY broken, the stress has built up to the point that my body has given out. I have been in bed since Thursday with fever, chills, headache and upset tummy. BUT still between trips to the bathroom, I still must get her food and water. I must drag myself out of bed to search YouTube for her favorite videos. I have even had to get dressed and push her in the buggy looking for something to eat at five o’clock in the morning…in the drizzling rain. I have had to run out to the local shop when I could barely walk.
That is what life is like for those in the trenches of autism…battling ALONE to save their precious child from health, education and social care systems that use secretive practices to deny them support they need and are entitled to.