The empty space in my heart
autism_diaries
Member Posts: 4 Connected
Danielle writes the blog The Autism Diaries about life as a parent with a child with an ASD diagnosis. In this guest post, she talks about dealing with the grief and loss of her mother and thinking about the christmas traditions of her past and the differing christmas traditions of her present and future with her family.
I’m sat staring into the warming glow of the lights on my Christmas tree as I write this. I’m listening to Christmas carols on my headphones. At this time of year they give me the virtual hug I so desperately need. You see, almost six years ago I lost my mum to cancer. And at Christmas time, no matter what I do, the wound re opens. Totally fresh, as though the loss happened only yesterday. I thought it would get easier year after year. But it doesn’t. I’ve learnt over the last two years in particular to really embrace the moments of sadness, the loss and the yearning. The yearning for just one last hug.
My child has struggled the last two years at Christmas time. The sensory overload, the people, the noise, the busy calendar. And somehow that’s made my loss even more raw. Because those traditions that I so very long for, they just can’t happen. Every year as a child I went to the candle lit carol service with Mum and Dad, sometimes brother in tow. I always thought that my children would love to see the candles, the flowers and the trees at church. But autism put a road block up that we couldn’t get passed. My family have never been to church together at Christmas. It was one of my favourite moments as a child (particularly the mince pies after the annual carol service – my record was 9).
I know I should be looking to form new traditions with my family, and we are. But traditions pass from generation to generation. That’s why they are traditions. And sometimes the pain of not being able to carry on Mum’s traditions is like taking a bullet to the heart. Because she isn’t here to form new ones. To form the autism friendly traditions that we as a family are so ready to embrace.
But if she was here, if she was sat next to me staring into the sparkle of the lights with a cup of tea (wine when I was old enough) as we always did on the first night our tree was up, I know exactly what she would say. “There’s always a way Danielle. There’s always a way”. And there is. So whilst I always take the time to think of Mum at this time of year, it is to Christmas trains, Christmas tree stars and presents that I now look. The things that my child can process, understand and enjoy.
Whoever you are, wherever you may be, make Christmas your own. And to anyone feeling the cold sting of loss at this time of year, you’re not alone. Many people smile through it. As will I. But many will be holding an empty space in their heart for someone they long to, but won’t see this Christmas season. Warm your heart knowing you’re amongst friends as you read this.
Tell us about your christmas traditions and if they are different due to an impairment. Are you dealing with grief this christmas? How do you deal with these feelings? Share your experiences now.
Replies
We never really had strong traditions as such but Xmas was always a time for family and we had a large family then. Now I am the elder family member. My sister has never been close and seems to do everything she can to drive us further apart. My children (3) make little effort to be a part of my life now. It seems they cannot cope with my conditions, especially how I have been affected mentally. My life, such as it is, has become a casualty of my condition also.
For 2 or 3 years I haven't decorated the house which was a big part of Xmas for me. Now it's just a reminder of loss but I am trying, this year, to change things for the better. Trying to patch up the gulf between me and my youngest daughter. Trying to get them to visit me at home and trying to decorate and get into the Xmas spirit.
Moving on with such difficulties can be daunting. I do hope that you can overcome your disappointment with the loss of tradition and start making new ones that you can share with YOUR family.
TK
I know I am different. I am open and honest which, sadly these days, seems to be old fashioned and anachronistic and all I write is just exactly how I feel about things. If I could I would take others problems from them but instead all I can do is to perhaps point out the positives that maybe they have yet to see. Unfortunately I cannot do the same for myself. I don't feel strong, quite the opposite in fact, I just do what seems logical and the cost to me is unimportant. Sometimes things have to be done regardless.
I hope that you do find a way to turn your negatives into positives and, I hope this doesn't sound bad, I am glad I never had those problems. I am sure though that you will find things turning around as you seem to be doing everything you can to try to do so. I see someone like yourself as strong rather than myself, who spent so many years running from the inevitable.
TK
Christmas accentuates my feelings of difference and despite my love of it in the past and my great memories of a happy time at home with my mum, dad and family I am starting to feel is this all worth it.
Anxiety, exhaustion, sadness all seem a big price to pay for a couple of days.
Time heals is an often used statement which is completely untrue. It does not heal it just diminishes the loss and buries it under new experiences that can make it feel less painful. The loss of a parent, especially at a young age, is something you never forget and never gets better. It certainly never 'heals'. It just becomes easier to deal with and think about.
As for passing up opportunities when stricken by grief. They are not opportunities that should necessarily be taken on board. Many of them can be borne from desperation and just used to 'get away' from dealing with the bad stuff that goes on in life. To really have a happier life you must ALWAYS deal with whatever has happened and get over it completely or you will drag the remnants with you forever.
TK
I will take one point you mention @DannyMoore to illustrate what I think is wrong with some religions. Forgiveness..... is something done in a lot of faith's and I disagree with it. In my mind there are some things that are unforgiveable. And yet, if you follow the faith, everything can and will be forgiven, so long as you are a believer. Should, for example, the people who carried out the 911 attack be forgiven? Should someone who murders multiple children or adults simply because they get a kick out of it be forgiven? If they are true believers in their faith they would be but personally I think that stinks!
However, this is off topic and I will not hijack the thread further. It should be discussed elsewhere.
I have so far gotten through Xmas by spreading out the few contacts I have arranged and, despite some physical suffering, have done pretty well. Never feeling really low. Not everything went to plan but, as I am a pessimist anyway, this was to be expected and I coped. Today has been a quiet rest day in preparation for a heavy evening tomorrow, so even that has been ok. I may come out of Xmas fairly pleased with my efforts despite the devastating news just prior. However, with reference to another thread, this hasn't changed my overall outlook regarding future occurrences.
TK
Sorry to hear of your situation. I think you have made your mind up and you are probably right in cutting ties with your eldest son especially if he is getting vicious towards you, not managing his own finances nor paying you anything back for what you have given him and dealing with your own grief.
I do do not know how this would leave you with access to seeing or contact with his children. Would suggest you either contact the Scope helpline or the Citizens Advice for more info. You haven’t said specifically why your son keeps falling behind with rent ie what is causing the lack of money - but would say that is probably between you and him anyway.
It could get very difficult if for instance the eldest natural grandchild comes to live with you. I do not know at what age Hulu can still apply for access to see a child up unitil. 16? 18? Or whether you have any legal rights to access as s grandparent unless your son is deemed totally incapable of supporting his children.
I think at the end of the day you need to think of your own safety and well-being before taking on extra responsibilities. As even at the age of 16 isn’t now a legality that you have to stay on in education until 17 so he would probably not be bringing in any extra money from a job only maybe child benefit until 18/19.
Best wishes of sorting it out
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So yes I know a lot of what you say. A thin line between love, help and support and ignorance , abuse of love and laziness. Christmas all feels very fake from some angles to me when giving presents to people you don’t see yet they only live 30 mind away.
I was was going to say what about meeting under some sort of negotiation with your son if still communicating. But as you’ve expanded a lot more it doesn’t sound worth it.
hope you get something sorted.
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At the age of 16 not only can your grandson choose who he sees he can also decide where he lives. However, if he should decide to live with you could you manage? Are your finances able to cope?
As has been suggested, separate your problems out into manageable parts. Deal with one at a time. Sort and organise each separately.
I am not quite sure from your words but, if your savings are £6,000, you should be able to get assistance or benefits. Not the complete amounts but some. It does sound like you need to sort your finances out properly.
As for your son I can only suggest that you bite the bullet and cut him off. I wouldn't advise making excuses as it shows weakness and he sounds like he will pounce on any weakness and use it against you. If you really need to though the simply say you cannot afford any more support. Helping him further, in any way, might alienate you other children and that is the last thing you want to do. Can you get them to help you sort things out at all? If you can become close with the others the troubled one might see that and understand that he will be completely in the cold and maybe get him to understand that he needs to sort himself out. It does seem unlikely though. As for his emotional blackmail, blaming you for his own shortcomings you need to just ignore it.
If you are worried he might in any way hurt you then refuse his calls or hang up on him and refuse him access to the house.
Above all. Breathe, slow down your thinking, take things at your own pace and allow yourself the time to think properly. You cannot continue as you are now and you absolutely must find a way to move forward at your own pace and look after yourself in the process.
TK
I hope you can resolve this with a minimum of emotional pain but I don't see how you can sort this situation out without some suffering.
TK
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If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected] If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.
I have memories as all of us do of losing loved ones or friends. The hurt and the pain last so long. I understand that. I am glad to see that you are seeking help and support with this.. I understand that is difficult that you think that no one cares. We care as a community.
All of us in the community and I am speaking personally have the sense of loneliness and these emotions and feelings. Hope you can try to think about the good times, the great memories you had with your partner. It is not easy and try to go on and try to cope. That is the hardest part.
As for your family yes it was your son s birthday. Is that important to you or him. You are in my opinion come first. If they do not have the decency to invite you do not go, make a fuss. I know you feel rejected and unwanted and may I say unloved. I understand and agree that you try to cope with these emotions and feelings. That's is important first.
May I suggest, please remember I am not interfering here. Just you remind me of many people who I have come across and I myself have been in a similar situations. Especially my family. I understand and still get very emotional and upset over all that. Now that is the past but still gets to me. One of the things I used to do and sometimes do is a stress diary.
Make a diary to write down all what is hurting, feeling emotional, words are a comfort. I used this idea by my support workers all the ones I have had.
Also may I say feeling down, depressed anxious and any other emotions. Write it down. Even better if you wish to at weekends I am on here looking for a chat or talk as many our community do. Am here to listen.. I use this forum all the time. Last time I was looking to see how you were getting on with life and things.
I know it is hard to express feeling, emotions and other issues and problems. We as a community try to share each others difficulties in life. I am always learning and am always surprised by the amount of support and emotional wellbeing I get with my posts. If I am having a bad day which is most days. If you look at my recent posts. I sound off on anything that hurts, bothers me. Thank you SCOPE and others for being patient and tolerant.
I hope and pray for you and please try to contact The Samaritans again I know reading what you said it was busy. I have done so myself once or twice maybe more and they are their to give help, support and advice. Take care nice to talk to you.
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As a gentleman for me to see and be with people who I have loved and care about gone. The days become lonely. I strive every day to go on but I can see and recall the memories. I find that I wallow in sentiment and think why me Lord. Yet I can understand that the time I spent with them was short but happy, laughter and tears. May each day be a day to remember.
A lot of my friendships and relationships were such days of joy and we all meant some thing to each other. Having friends like that we are were part of a community but I have to look back not only with tears of pain and realise that the opportunity to help others with problems and find solutions.
The giving, sharing, warmth, caring that they bought to my life and each other lives enriching having a shoulder to lean on.
The memories last long and linger.
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When you have had an addiction history. It is a community. I do not want to upset any body in the forum. People say to me I could not cope with that. When I explain you are in rehab or meetings or group sessions. The person you are talking to might not be there next day or week You strike up a friendship each day or week that you meet. As you do. Then the day comes they might have to back into hospital or some thing like relapsed. Even worse the end has come. Sorry if I was upsetting anybody. It does happen.
I have to put my supportive ,compassion heart out there. Even if you are crying a thousand tears inside, so hard so difficult. I feel the hurt of others. Probably why I since never really get close to any body any more.
I have a mate up the road me and him support each other. Need to share both of us doing OK and are always talking about who we have lost in our community. Know last few years lost mates some of them with partners and children.
I struggle with as I say thinking of this now but it is the stories that I can gladly share with every body of there lives. Moving on always try to any way. Have to but, what does make my angry this disease is never really discussed in full society.
Maybe I am the one who is a survivor to discuss and debate this. Last mental health charity hated me talking about it. My mate works in clinics supporting others drugs and alcoholism. I feel that we as a society do need discuss the harm it has done. Always start of year on the web causes for concern. Health stories the worry and the damage it is doing.
Take care
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What ever the illness or problems we as a community need to express the feelings emotions, so others can learn and be aware how can I deal with this. Seek help and advice to deal with traumatic situations. Life is never easy and trying to cope with what can be often daunting experiences.
Not be afraid to discuss what is bothering you. All of us have had issues. That we can support each other.
I use my life knowledge to benefit others who have fallen down and I have deep respect for those who have to go through a lifetime of battles. Be much as I can for them. Ready to listen and offer my sincere support, kindness.
Offer comfort, prayer, words of wisdom if I can.
Hope you take care nice to talk to you.
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If you or anybody else reading this thread is dealing with thoughts of suicide, please do remember that the Samaritans are contactable 24/7 at 116 123 (UK).