She boils my blood
I’ve said before I have 2 children both with needs, one going blind and has major sensory issues another one who has massive delays and peg fed. With the little one we were told they’d never walk talk etc but with hard input from us as they’re parent they are now walking and trying so very hard to talk. I want to shout that from the rooftops I’m so incredibly proud how far they’ve come considering the initial diagnosis. We have no help whatsoever, my husband and I are frontline nhs, either he’s in work or I am. Our little one is peg fed every few hours as they can’t tolerate huge volumes but whatever goes in inevitably they vomit, doesn’t know how to swallow so is a massive risk of aspiration. I get up all through the night to feed, sit up for a good hour after as I’m afraid to put them back to bed in case they’re sick. We are fighting for a cot at the moment so I don’t have to physically get them up, I can just incline the cot to lessen the risk of aspiration but we’re deemed to not need that. She is not the face of a SEN parent, she doesn’t represent what I’m trying to fight for, for my children 
