true tales from the gates of the underworld

Please don’t tell me everything is fine
September 21, 2017, 9:36 pm
Filed under: Life, ND is OK | Tags: , , , ,

Back to school. I think most parents of neurodivergent children dread this time of transitions and new beginnings. The meetings, the meltdowns, the battle to be the voice for our children. 

School staff always think they are doing me a favour, when they tell me in a reassuring tone how great Squidge is at school. Good as gold. Always does what is asked of him. No problems at all. Everything is fine.

Everything is not fine.

My child comes out of school and he is pressurised like a shaken bottle of coke, and the lid is about to come off. There is biting and headbutting, screaming, vocal stimming and hitting. Clothes and shoes are discarded almost immediately, sometimes they start to come off before we even get to the car. He bit his brother so hard today that he broke the skin. I need to keep him safe, too.

Everything is not fine because he has been good as gold all day. No sensory breaks, always hiding behind the mask. Being himself is scary at school, he says. 

Everything is not fine because he is in a new classroom, where the windows are different to his last one, the tables stand in different places, the routines are not the same. His list that helped him gather himself to go home at the end of the day didn’t make it to his new teacher.

Everything is not fine because he doesn’t get to change his reading books when he wants to. Explaining that he can read library books does not help.

Everything is not fine because I can’t safely drop him off with the other children outside. There is nobody to watch the gate. 

Please don’t tell me everything is fine, you are not reassuring me. All it does is undermine my belief and hope that you can understand and support my child, because you can not see how hard he struggles. He probably is good as gold, but please, for once, could you say Tell me about the little things to look out for? What can we do to help? And maybe one day everything really will be fine.