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.
I'm so sorry for your loss. I'm sure your son was a remarkable person. As for coping, I don't know what to say other than take it one day at a time.
Hi there, I keep saying this quite often because I would be really in need of someone telling me the same in that case… The fact that you haven’t got much replies so far doesn’t mean that people don’t care about or don’t feel for you, it’s just so difficult to say anything and knowing it’s probably not going to make you feel much better. It will be especially upsetting for those who would otherwise be in the best position to give you some advice, people who have some recent experience of losing someone they loved deeply, whether that’s a child, parent, other family member or pet, and/or know the loneliness you are describing all too well, for whatever reason that may be. I don’t mean to blame you of upsetting anyone, quite the opposite, it’s good that you came here, but it is a difficult thing. Just wanted to say that before the night.
It’s not only upsetting to read it though, as sad and big as your loss is, but it is good to read how much you loved your son and made him feel loved too, thanks for sharing this. Guess quite a few here don’t really feel particularly well understood and loved by parents and other family members and that hurts a lot. Maybe it’s often not actually true that they don’t care but they just struggle as much. Maybe you can help others (people caring for or living with someone autistic, family member or otherwise) to understand them better? Maybe not right now, suppose that may be a bit too soon, but perhaps at some point when it feels a bit less raw. Perhaps your local NAS has some “use” for you? They usually get only lots of desperate people asking for help…
Have you had chance to meet people that are in a similar situation to you? Somehow counselling always seems to require that you get better quite quickly. I’ve been told there is no time-frame within which you should be expected to get better, but counselling the way it is administered does somehow suggest that. But if you could find some kind of group for people who have lost their child then perhaps something more long-term would develop out of this. There’s no way of knowing, but it would be worth trying if available. And you will probably also get some responses here from people that are trying to fill big gaps that were left behind by someone they love so much, it may just take a bit of time. Maybe in the meantime try each day to think of something nice you can do and do it, to yourself and each other, I mean. Little things, let the sun shine in your face, go for a little walk, eat something nice, take a picture of something nice, put a CD on you like or a film, hold each other tightly… If you can’t come up with anything that’s o.k. too, maybe the next day then.
Sending you a big hug, really wished that was possible.
Danny sounds like a very special person and so, so loved. I can't begin to imagine how to cope with such a loss, especially so suddenly and traumatically. I can understand your feelings of his loss leaving an empty hole in your lives as it's apparent how devoted you were to your son, missing his laughter and his caring presence too. You do still have those lovely memories of Danny's lifetime's worth of things you all shared though, those can still be treasured as Danny himself was. As such a close little family unit, I can imagine that you both were equally as important to Danny and just as treasured by him. He would want you both to take care of and treasure each other just as much as he would have during this time, I'm sure. I wouldn't rush too much into filling your days with anything other than taking care of each other for the time being and remembering your beautiful son together.
Have you been considering pursuing or exploring the idea of an autism diagnosis for yourself? Some traits of female autism appear to become more evident or troublesome with age, as mine have. If, as you say, it's something you have considered in relation to yourself then perhaps reading up on female autism traits could be helpful in deciding whether to pursue it further? In my own case I have found it to be something of a healing process as it's taught me how to understand and take better care of myself.
Sorry I couldn't offer much in the way of help but do take care of yourself and your husband and continue to enjoy those lovely memories of Danny. xx
Thank you for this Oktanol, I realize that many people will have found the subject difficult and not know how to respond. Danny was a very special boy and the centre of our lives I think I will contact the NAS and see if there is something I can do once my wife becomes mobile again (she had a a fall in February and is housebound) We were attending a group for bereaved parents and it helped but we have been unable to do this since Kim had her fall. Currently I spend part of the day playing with the computer games that Danny loved and remembering the joy he got from them. We hold each other often and have watched movies we knew Danny loved. On his birthday we went to his favourite diner and imagined he was there with us. I have found listening to music difficult, so many songs remind us of Danny and bring the tears flowing. There are some good days and so many happy memories of Danny. I just wish I could speak to him one last time and tell him how much we love him as I know he loved us too. His last words to me were "I'm sorry Daddy" because I needed the loo when he was using it and I told him that there was nothing to be sorry for. I don't know if Danny knew he was going to die but it sometimes feels that way. I hope that he is in a better place and that we will be reunited one day. Hugs to you as well
Thank you for caring Endymion, We were devoted to Danny as he was to us. He told us he loved us both and he never wanted to live apart from us. Danny was a happy caring boy and always wanted to make our pain better (My wife has arthritis in both knees and her hand). You're right in that we have a lifetime of memories but it is so hard recalling a lot of the happy times although I am told this is common in the early stages of bereavement. We keep many of Danny's favourite things around us as a constant reminder. We have his ashes stored in his favourite talking cookie jars as we couldn't bear to be parted from him. Every day we talk to him and wish he would answer. I have been talking care of my wife as she had a fall in February. Before that we tried to meet with people in similar circumstances and that helped us a bit. I am male so female autism traits do not apply but I will consider getting diagnosed. Seeing so many similar traits in Danny and myself has helped me over the years as it helped to explain why I acted in certain ways. Socialising has always been difficult for me. Thank you for all of your advice. It does help
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
Ah! Sorry, I did make the assumption that you were Danny's Mum and I shouldn't have.
However, my advice still stands re. female autism traits as they don't so much refer to the sex of the autistic person but to a style of thinking and coping with regards to having autism - plenty of late diagnosed men on this forum say that they can relate to a lot of those traits!
In fact, the coping strategies included in 'female' autism tend to be the reason that so many people (men and women) have gone un-diagnosed for most of their lives! The old diagnostic criteria was weighted heavily to reflect the mostly-male study-participants back-in-the-day and influenced by the then-popular 'Male Brain Theory' which meant that many people (men and women) were missed. New diagnostic criteria takes this into account and having 'female autistic' traits has nothing much to do with being biologically male or female. I hope this makes things a bit clearer, if I've explained it properly?
Hi Danny’s dad (bit strange, that number thing), sounds like you are doing totally the right thing (not that there is any right or wrong, but you do things that seem to do you good). Guess, the way you simply are, you could only feel less pain now if you weren’t loving and now missing Danny so much, but then, what would the previous 31 years have been like, for all three of you? Perhaps that won’t make you feel any better now, but maybe it makes your feelings a little more acceptable, also in the longer term. It’s not the same thing at all but I’m still really sad about the way I lost my job in UK and a lot of other “things” as a result. Lots of people told me that it will get so much better once I’m out of the country, but it hasn’t happened and this expectation others had has made this even more painful. Eventually someone who seems qualified enough to convince me said it’s perfectly normal for this to last for a long time and it would probably happen like this to many of the people that thought otherwise. Perhaps it sounds stupid but this has helped somehow, not as in making me less sad, but at least fighting a little less against it and hurting myself more that way. From that point of view the group for bereaved parents would probably be a good thing to go to again when you can both manage, especially since you found it helped. While other people may just assume you are getting much better now you’ll probably find a lot more understanding there of how you actually feel. Hope your wife can also soon get out of the house a little. It must be so incredibly depressing to be stuck indoors, that has a pretty profound effect pretty quickly even on otherwise happy people. You seem to be a rather private person (I may be wrong, but that’s how you come across to me). If so, would you say the same applies to your wife? Because if she has a somewhat bigger need for social interaction of some kind, perhaps it would be worth thinking about someone who may want to come and visit you now and then? Maybe someone from that group or see if Danny’s friend would like to stick his head in now and then? You say you have no friends but actually Danny’s friend, isn’t he also a bit your friend? He seems like a lovely chap and he has done what friends would do in such a situation – trying to support you. And he did a pretty good job, didn’t he?
Hi Endymion, no need to apologise Thank you for your advice and explanation. I will look into diagnosis of autism Thanks you
HI Endymion, the sadness is not something that will ever go away I think but some days are better than others and I have learned not to dwell on the what ifs and whys as hat does not help. I wish there was some way I could talk to Danny but I do have one sided conversations with him. I am quite a private person as is my wife but we have tried to get out more since Danny passed. I did try to get people from the group to visit or ring but have had no luck just the odd email. I don't think Danny's friend would be comfortable visiting us without a specific purpose but I will talk to him. I am going to try to go to the bereavement group on my own and talk to them about Kim. Maybe someone will come to see her. Last night we watched the video of Danny that his friend made and we laughed in places. It was so lovely to see him happy