Hi, sorry the long story, our child is almost 7. Non-verbal. Unaware of danger, needs 1-1 24/7 Tries jump from the stairs, steals our drinks or takes the cats water or washing up water and pours it everywhere (including liquid in plug sockets) needs to be given drink by a syringe, only eats the batter off chicken nuggets, Yorkshire puddings, cheese off pizza, toast and tuna, literally. Stamps food in to the floor. Wipes her hands on the walls. Tries to eat hand wash and toothpaste. Refuses to have baths, hair brushed teeth brushed and it takes me hours a day trying to do these. Wears crocs constantly even in bed and has a meltdown if you try and take them off her. Puts small objects in her mouth. Eats cotton. Doesn't go to sleep until after 3 am every single night. Screams through the night. Still in nappy pants. Elopes near water, tries to escape the house we have extra chains and a door alarm but also refuses to walk any other time outside the house and has been prescribed a wheelchair. Was attending part time nursery and when her peers went up they kept her in nursery with a 1-1. Towards the end of the second year of nursery became terrified, hysterical about school and was unable to go to school, and is now home educated because of this.
Our pediatrician consultant has sent a letter regarding our appointment this month and has basically not only focused on the good (said childs happy and energetic) but also lied about what we discussed) Said I had said child eats an array of foods (complete fabrication because her eating habits are why I emailed to get an appointment to begin with) wrote she doesn't "consistently" use words when she doesn't use words at all. Wrote that there's no mobility issues and she "likes to stand" like what does that even mean? when I have to carry the child because she lays on the ground or climbs up us and has been prescribed a wheelchair. Wrote I said she never settled at school when I had said was happy at school until she wasn't. Honestly theres just so much more. Anyway AIBU if I complain? And further more does anyone know why they would lie like this? Our child has had high rate DLA since her portage support worker said to apply when she was 4, I did a COC regarding her mobility and they have not only not given that, but reduced her care now despite having way more needs. Family and friends can't believe the write ups are about the same child so I have nothing to evidence the extra needs. Thank you if you got this far anyway