COPING WITH LOSS OF AN AUTISTIC CHILD

HI, we lost our son Danny to a Pulmonary Embolism in August last year. Danny was our only child. Danny was 31 years old and at  the higher end of the Autistic spectrum although he sometimes had trouble with his speech and got frustrated when he couldn't get his meaning across. Danny was a loving caring boy and was happy most of the time. We didn't talk a lot only short conversations about things that interested him but we talked every day. Both Danny and I were fairly private people and I believe I may also be Autistic although I was never diagnosed as we had so many similarities. Danny struggled with his weight and he had a limited diet which always worried us but there was not much that we were able to do.

Danny's death was very sudden and completely unexpected. He had a leg infection from early July up until he died but his leg was slowly improving and he saw a nurse every day to have his leg looked at and the dressing changed. No mention was made of blood clots or DVT and we saw no obvious signs. Danny complained of soreness but said he  was ok. On his last day Danny was sick and had cold sweats and a breathing problem for a short time so we called in the doctor who thought that Danny had a viral infection. That evening Danny was ill again so we called for an ambulance and although they came very quickly it was too late. They tried heart and breathing equipment for some time and then took him to hospital. They worked on him for several hours but had no success and they told us that he had not breathed unaided for some time and even if he recovered there would be severe brain and internal damage. We said our goodbyes and then they turned the machines off. We had to wait until October for a coroner's inquest to find out the cause of death.

Since Danny died we just don't know what to do and every day seems so hard. Danny was such a huge part of our lives for 31 Years and he always lived with us. We miss him so much and find it hard to cope with his loss. There is a big empty hole where he used to be and we are often in tears. We have received counseling which has helped but it is still very difficult for us. We have very little family and no friends, all our attention was focused on Danny and on giving him the best life we could. We miss his laughter and his caring and all the things we shared.

I would welcome any advice on coping with the loss and also with what we can do now we no longer have Danny in our lives just the memory of a lovely son.

Any advice on how we can fill our days would be welcomed. I don't currently work and haven't worked for Two years because of Fibromyalgia but have considered returning to work

Thanks for your help

This is the last photo we have of Danny taken December 2016 with his phone as my camera was out of power. It isn't a great photo but I treasure it.

Parents Reply Children
  • Thanks for caring DragonCat, Great name, I have always loved Dragons. We do take it one day at a time and some days are better than others. We had a real boost on Monday. Danny's best friend who is also autistic came to visit and bought with him a video tape of the Two of them playing together with Transformers when Danny was 16. I converted the tape to DVD. It was lovely seeing Danny so happy and laughing and he was wearing his favourite transformers shirt which we discovered in a shop in Leicester some years ago. That also bought back fond memories. Danny's friend also bought down a whole heap of audio clips which he had painstakingly converted from cassette tapes over several weeks. A real labour of love. We talked about Danny a lot and his friend also told us how much he missed Danny. We thanked him for everything. There were tears watching and listening to Danny but also joy at his happiness. Take care of yourself