HIE - anyone with an older child who had this at birth?

[MollySilkNose]

Hi,
My 11 year old suffered Grade 2 HIE (hypoxic ischemic encephalopathy) at birth. He was signed off from paediatrics at 2 years as there was not major physical or intellectual disability. However, he has since been found to have a number of specific learning difficulties, SALT issues, hearing and vision issues, sensory processing issues and motor coordination difficulties, and is diverging from his peers. He is struggling in mainstream school because of the cognitive and sensory overload and I am currently appealing a special school place.
One of my biggest concerns is his behaviour. He can be the sweetest most loving and fun child, but when he is overwhelmed he cannot cope with anything or anyone and gets extremely angry (he holds this in at school and saves it for home).

I have, after 3 attempts, managed to get him referred back to paediatrics, but I am trying to find any other support that may be out there, or just others with a similar experience. The HIE charities/organisations I've come across seem to focus on either babies, the more severe outcomes/disabilities or are based in the US. I'd just like a bit of support on how to manage the whole thing. We seem to be put into the ND category, but I'm not sure if this is the right approach? Anyone with any experience or insights they could share?
Thank you.

No personal experience but have a friend, she falls into the severe category, 24/7 care, she’s about to transition to “independent” living as her mum is burnt out and dad not willing (they divorce a few years ago).

unfortunately everything you have written may or may not be attributed to this so I suspect it could be tricky to get specific advice

Thank you. Yes it is the specific advice I'm struggling to find. Maybe it's not possible.

By the sounds of it, a lot of the difficulties are similar to ADHD and autism and you could look at strategies/supports for this.

Do you have access to OT? They are meant to be quite good at looking at the situation the child is struggling to access and figuring out what could be changed in the environment to help (e.g. sensory supports, tasks to be broken down etc) but also which areas the child might need more targeted focus in the skills area in a similar way to how SALT works.

My little girl had this but she is only 2 so obviously we don’t know what challenges lie ahead for her. Do you know the charity Peeps-HIE? They support families who have a child with HIE. They do have a support group for families whose children have similar needs.

https://www.peeps-hie.org/episode-5-peeps-in-a-podcast-the-betweeners/

Thank you. I have just listened to the podcast and it's exactly what I needed. I will get in contact with the charity 🙂