Published on 12, July, 2020
Hello my friends, I'm posting this in autistic adults because you are my friends and family.
My son also autistic had a lump (gp had insisted it was just a little fatty lump and nothing to worry about) removed from his head privately on Thursday evening. The surgeon was a little bothered when he found blood clots not fatty tissue, then went dead pale when he found a hole in sons skull. He packed it and took us to A&E.
A&E didn t believe him!!!! Eventually after a cat scascann 7 hours later they did believe and blue lighted us to st George's hospital in london.
So son has a 25 mm lytic lesion in his skull and cancer. How do I tell him? He knows about the hole, he knows it's not good but he's not got a clue about death. People die, they are meant to. He loves our cats but once they die they are gone. I don't know what to do or think it say.
I am not asking for attention or sympathy, just for advice on how to deal with this for him and for me.
Song
Oh Song, so sorry to hear about this.
Macmillan were really helpful for me re. information when my dad was terminally ill last year and the local hospice have been amazing, both when he was there and supporting us afterwards.
There are usually specialist places for children in such a situation. Could you get in touch with your local children's hospice or the children's branch of your main one if that's how you are set up locally and ask for advice from them?
They will have a lot of experience in approaching this issue with children and supporting parents in your situation and from my experience hospice staff are the most flexible and sympathetic people in the healthcare system full-stop when it comes to individual needs like autism, for patients and family alike.Hope things go as well as they possibly can, thoughts are with you both x