Coming to terms with ds’s TBI

[NewToThis439]

Sorry for the rambling posts

Ds11 was born healthy, at full term, no issues, struggled academically but very sporty - he particularly enjoyed badminton and cricket. Last year he suffered an anoxic brain injury after a cardiac arrest of unknown cause. He’s finally home but he’s different now, he has issues with spasticity, is wheelchair bound and nonverbal, has issues maintaining his bodily temperature and much more.

I don’t know why I’m posting this, but thank you.

[Headfirstintothewild]

Your feelings are understandable and normal.

Have you had any counselling?

Do you have support in place, both for DS and to also allow you respite?

[Lesley25]

Handhold.
i wish I could in real life.
Get a social worker, access as much as you possibly can and keep posting on here.

[CadyEastman]

Wish I could give you a real life handhold too @NewToThis439

[Bramble19]

Hi @NewToThis439

Always feel free to ramble away. My son also had a catastrophic brain injury although he's younger than your son at only 4, similar to your son my boy cannot walk or talk now although he is making progress for example he can now push a button linked to his ipad to stop/start hey duggee.

We are past the 'medical' stage if that makes sense, so although he has alot of therapies and medication to prevent seizures etc. he's stable and generally well. I know not all children become very stable and don't know if that's on the cards for your son but well done to him, you, and the medical team for making it home- that's a huge step.

I've not yet come to terms with my son's ABI and not sure when/if I will, it comes in waves and at the moment it's a particularly tough time. You feel how you feel, sometimes it's better and sometimes it's not, being kind to yourself and having others who you can vent at, celebrate with and just be around is invaluable. I've found my local SEN community really difficult to get involved with just because our experience is so different to others, I'm not say that what happened to our sons is 'better or worse'/'easier or harder' (excuse the not brilliant language) than those with children for example with autism, cerebral palsy etc. but it is a very different experience. To know my son from before to now is hard, particularly the differences in personality and temperament.

I imagine you were linked with the Child brain injury trust in hospital, but if not they are a great resource.

The other unexpected joy is him going to school, I very naively expected him to go to mainstream (clearly I had my head in the sand), but he is now at a special school for children with SLD/PMLD. Lots of the children there have very complex cerebral palsy or rare genetic conditions, some are on long term ventilation, some have 1-1 or 2-1 nursing care at all times. There he is just one of the gang, they are completely unphased by his needs; and most importantly they celebrate everything he does, they are so positive and that has been a big boost to me.