No family chooses this




I haven’t updated in a while. Things have been really difficult (still are). So much happening - appointments, assessments, reports, meetings (schools, CAHMs, hospital). We’ve been waiting so long for some these things; I just wish everything wasn’t all happening at once. 

Little C is struggling. Today we should have gone to Forest school - 2 hours of outdoorsy fun at his current school. We were ready to go but then he said he couldn’t do it. What followed was heartbreaking. Little C became hysterical crying saying ‘I want to go but I can’t do it’, ‘just force me to go’. Me trying to pick him up to carry him and him lashing out violently in sheer panic. Then followed extreme crying (screaming, clawing his face, almost vomiting) and saying ‘my life is too hard I just can’t do anything’, ‘please still love me’. This went on for well over an hour. I’d told him it was okay, we wouldn’t go. But the problem was that he wanted to ….but couldn’t. 

He talks of his brain telling him ‘no’, and he can’t get past it. He doesn’t know why and it scares him that he can’t do things. He keeps asking me why. 

On a more positive note he had his birthday this weekend which he loved and it went really well (we kept it quiet). He’s managed most appointments including an ECG at the hospital. He didn’t manage an important assessment at a specialist school last week and it’s clear the demands of the last few weeks have taken their toll on him. 

We are all exhausted and today has drained me of anything I had left. This is hard, really hard. I read a thread on social media today by ‘Missing the Mark’ about school absenteeism and forcing children into school. The thread ended with the line ‘no family chooses this’. This is how I feel. 

This is so far from how I ever imagined having kids would be. Going to school was always just a given. It now feels like it’s just one of many things on a never ending list of ‘things my child can’t do’. It’s not top of the list any more, it’s not even close. 


Illustration by Missing the Mark 


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