The empty space in my heart — Scope | Disability forum
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The empty space in my heart

autism_diaries
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.

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Comments

  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I have never had to deal with autism in the family but I understand the loss. My father died 34 years ago and my mother last year. Time helps but the loss never really goes away. Like many things in my life now I simply have to manage it.

    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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • autism_diaries
    autism_diaries Member Posts: 4 Connected
    edited December 2017
    @Topkitten What strength it must be taking to both fix things with your daughter and decorate your house. You're an inspiration to others to be looking forward as you are. Without change, there is no change, as they say. I'm so sorry for the loss of your parents. Like you say, it becomes a part of your life and you just learn to manage it. I wish you the warmest Christmas wishes and hope your relationship with your daughter improves xxx
  • autism_diaries
    autism_diaries Member Posts: 4 Connected
    edited December 2017
    @DannyMoore firstly wow - what an effort you have put in to helping your family, and what a fantastic father it sounds like you have. I know my Mum is watching over me, I see little signs all the time. I hope your wish of seeing your family together again comes true this year. A very merry Christmas to you! 
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    @autism_diaries I thank you for the comments..... I think. I'm sorry if that comes across badly but I think of myself and neither a nice person nor anything special. Certainly NOT as an inspiration, lol!

    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
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • monka
    monka Member Posts: 8 Listener
    My mum died in 2003 at Christmas time.  I feel her loss constantly throughout all my days but particularly at Christmas as she really loved it.  My husband left our small family 8 years ago and I have recently been divorced from him.  My son has a severe physical disability and I care for him 24/ 7 and I have a daughter who also lives with me.  Life has become really tough recently as for the past four years my son has been desperately trying to find work unsuccessfully.  He has two degrees and despite trying really hard has been unable to find anyone willing to give him a chance in his chosen field of work.  He has become really anxious over many things over the last couple of years including a failed business and Christmas time he is always much worse.  I find this really tough tying to be the same as other families and entertaining a little bit but my sons anxiety and physical needs at this time leave me feeling extremely sad.  My sons  friends who have moved away come home for Christmas and all talk about how successful their lives are with good jobs and successful relationships and this is a constant reminder of how different life is for us. 
    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. 
  • bevvyp
    bevvyp Member Posts: 42 Connected
    This is the first Christmas without my husband and father,  both died to cancer in June and July and I am numb with grief, can't turn to family as they are the same, christmas has been a lonely blur tho I had 14 for dinner on the day _ but that makes the house more dead now they have all gone, I know I should be thankful, but the minute the door closes I know I'm on my own again for days and it's driving me mad
  • autism_diaries
    autism_diaries Member Posts: 4 Connected
    My thoughts are with you at such a difficult time. You can be surrounded by all the people in the world and still feel lonely, like a part of you is missing. The pain of life continuing on is a difficult one to bare. We have no choice but to carry on, as time takes us with it. They say time is a great healer and it is, but to start with it’s the time passing that is most painful. Allow yourself time to grieve. It’s the only way. That and the comfort of knowing those 14 people will still be there at the end of your tears. I’m sending you the biggest hug. Book in lots of time with people you trust and the world will seem a brighter place, at some point xxx
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    With respect.....

    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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I am quite happy not having a faith and I do not need something beyond the world as it is to believe in to get me through life. However, I never think it right to cause any issues to another based on their belief. Some people NEED to believe in something bigger and greater and that is their right. I DO have some issues with how a faith is handled by the people 'in charge' of it, so to speak.

    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
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    edited December 2017
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  • bevvyp
    bevvyp Member Posts: 42 Connected
    Hi everyone I hope 2018 will be kinder for us all, can someone please say something positive to me please, my son (36) has decided to call me allsorts of profanities because I didn't buy the right gifts for christmas, when his dad died in July e promised as the eldest, to help me but since beginning of Dec really, he has become very vicious to me, also stopping me seeing my 4 grandchildren (from him) luckily another son has 4 girls who live near me but I miss the boys, I have to walk away from my son as this is the 6th time since he left home, that he is being evicted through not paying rent, when my hubby was dying he was being evicted _ this time last year _ and I paid 1400 pounds to keep the stress from our door, for my hubbies sake, which also caused a problem with our 2 other son's who didn't want us to help again_ my grandchildren can't be on the streets tho, he is one parent family to my eldest grandchild and has custody of 3 others at the weekends _ but has blackmailed me with this for years and we have paid a fortune to keep him afloat _ I wish I hadnt done it the first time, so believe I have helped make it too easy for him to blackmail us, but now I'm alone and not supported financially in any way but not fit for work, so spending 1000 eveyr 2 months of my saving money, I will run out in 50 months _ not entitled to any help coz we saved and I have above 6grand_ now has blocked any way for me to contact my eldest grandson _ 16 in feb_ who wants to come live here, coz he can't cope now !! What am I gonna do, I'm desperate for someone to please try and untangle the mess I'm now in, desperately please please
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    edited January 2018
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  • Neil2017
    Neil2017 Member Posts: 155 Courageous
    Hi @bevvyp

    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

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @bevvyp Pleased to meet you.  I am sorry what you are going through.  The most important person is you not family members.  I can see you have done a lot of support and you are putting family first not you.  I have no family well I do but I know I did the right thing walking away.  I have no children of my own or in  a current relationship.  I feel for you and know that I have been used by people for anything I have.  You son can not help him and I think his attitude is all wrong.  My mother was like your son when ever I bought her anything.  So guess what asked for the gifts get refund back.  Kept money for myself.  Spent it on me.  Not worth it.  When telling people my son bought me nothing usual spiel to those that would listen.  That's when I would say some thing.  Lies hurt every one.  The truth hurts the most.  My mother used violence to get her way.  So I had to stand and walk away.  Even though you have grandchildren.  This is hurting I can feel it.  I have nephews and nieces who are being used as a pawn by my sister and brothers.  I have moved on and if the nephews and nieces wished to know me.  Let it be.  Using them to form another senseless useless relationship with my mother.  It is not going to work.  What do you want?  You need the love care and compassion of people who understand.  I am not a relationship expert but you are special come first not others.  That is what I say to myself.  It is time for you.  Best wishes and take care.
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  • bevvyp
    bevvyp Member Posts: 42 Connected
    @DannyMoore xxx thankyou so much for breaking this down for me to understand, very wise xxx heartfelt thankyou,  i couldnt find where one end stops and the other end starts xx x, @Neil2017 thankyou for you're input too, my son doesn't have the rent money most month because he doesnt work as his other kids are always dropped on him at the last moment in the week plus he worked for " pimp my  v'dubs"   and i know he backed a van into an area where it got damaged  and then they gave him a 2017 v dub _ and I rang him without thinking _told him his dad had died ( he knew it was coming) but he was on a motorway * ( he shouldn't have answered) and crashed it _ __so he says ????  Maybe a good excuse he has never held a job for more than 3 months _ tho his dad worked all his life and son was brought up to know work is important if you want any kind of future _ to the point of not allowing him to sign on from our  address, straight from school _ I'm not sure about this ? He has told me sooo many lies in 36 yrs , he sorts things around the situation to suit (I think) but he does tell me what I want to hear ( i think) but i would rather know the truth, the mother of the other 3 grandchildren doesn't give him any money to help with  him taking the children every time the police arrest mother for violence against her / by her to partner or cocaine violence _ I know it's hard on him BUT he gets money and spends it straight away without thinking, he is suffering from losing his grandad and dad in 5 weeks but also has the a conscience _ he has always called me and my late husband awful names and stole from grandad and dad, think he is taking spice/ legal high ???  ?? Xx thankyou xxx then I come on to @thespiceman! !! Thankyou x it feels you are the equivalent of me but male, I would  like to meet you x so sorry you had to walk away from loved ones but obviously abused like myself, for sanity we have to, my hubby said " I'm only 50 " and he made me promise to find another love,  Not that I'm looking but in a weird way it's comforting to know that  there are men who have the same values of my late husband, he was an old fashioned gentleman but only 64, he treated me like a queen but I'm not bigheaded, but lovelost thankyou all xxxx
  • bevvyp
    bevvyp Member Posts: 42 Connected
    edited February 2018
    @NEIL2017 My grandson stayed a few weeks ago because my son threatene to kill him, didn't tell the police that when they came, coz he would have got prison for threats to kill ( I think it was just words _ he has never even smacked him) but the police say " if he comes here they WONT make him go home coz if he runs again it's more dangerous,coz then they will be looking for a missing person __ he only went home then because his dad told him " he wouldn't get another place without him !! And will be on the streets _ so he went home _ emotional blackmail on his son !!!!!!!!!!! But my grandson told me _ as soon as his dad gets a place, he is moving inhere _ I obviously won't stop him but told him _ if he comes here to live _ he has to stay on till 18 at school ( just up the hill) from here to do his A Levels x so frightened for the future but thanks to you all, I can St least get a honest answer to my worries xxx thankyou all so much xxx 
  • Neil2017
    Neil2017 Member Posts: 155 Courageous
    @bevvyp wow is that for real. A lot of stuff to deal with! Can emphasise a bit in that I have a brother who has borrowed money in the past and hardly pays anything back to my parents despite being in a steady job. He is Married to a sister-in-law whom I am starting to wonder having read a lot of stuff on here has she got ‘hidden’ disabilities although on the positive as far as I know she has no addictions to illegal substances. They have a disabled son still at school who she uses at any chance to for example not bother to even do some part-time work. They came around Boxing Day for their annual visit (another long story in itself). She didn’t do hardly anything considering parents in 70s and father on dialysis. Didn’t even ask how he was. Then found out nephew was due a check up in hospital following day. Dad also due in for a dyalsis session at around the same time. Did they visit - absolutely no.

    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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