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Grandparents want to be involved - but the emotional etc. cost

vonclimax

My wife & I are fit, intelligent 73 year olds.   My daughter (48) & her 6.5 year severely autistic boy are currently on their longest visit yet - 5 days so far,  (but I wish they were going home tommorrow). Oh! the guilt, for not wanting to 'soldier on regardless'.  Of course my misssus is much better at all this than I.

To give my daughter respite, we are watching, feeding & cleaning up after the boy for some 14 hours daily. He's a beautiful angel, destroyer of property, creator of tension, who while not doubly incontinent is likely to empty his bowels in bed or in the bath.   We know that perhaps there is no answer, but would greatly appreciate any advice in coping, without losing the will to live.

Thanks in advance............

  • Thanks v. much Princess, Jim & Patiens for your heat-warming advice - all of which will be followed.   You are all correct of course!   A lot of the time I am in balance: frayed nerves & emotional exhaustion are worth it when you get the cuddle, smile, eye-contact, or a cogent 'mand' addressed directly to you.  

    The polished dining table has been treated like an anvil. OK I'll cover it next visit.  The enamel on the bath has been chipped & wallpaper scored elsewhere.  I'm learning to regard these as 'honourable scars', won in the great respite campaign.

    They left 24 hours ago & I'll need another 48/72 hours to recover at least.   Then I guess we'll try hard to gird our loins for the next half term.

    Of course we have to try & compensate his year older healthy brother,   who has to obey all the rules as he watches his brother run wild.   

    Thank you for being here, warmest best wishes to all...........

  • Hi VC,

    73?

    Okay.  I am not autistic and I have not looked after an autistic child, other than in my day job supporting children in a secondary school whose behaviour is clearly not of the level of your daughter's child.

    I was dad to a massively handicapped little one who died a good score years ago, who presented a great many problems that required 24/7/365 care from her parents for the scant five years of her life.  And horrific as the consequences would have been for me, I wish still that she was alive today.

    I won't advise you just to think of her and buckle down to it.  It's not realistic, and it's not fair.  Not that there's anything fair about any of this, for any of you.  If my experience with my own child is anything to go by, grandparents (and other relatives including siblings) of autistic children are in most instances going to receive far less than the even minimalist help,sympathy and support available to parents.

    Free advice is often worth exactly what you pay for it, so what follows are thoughts for you to think about and see if they make sense. 

    You are 73 and struggling with a 6.5 year old.  You are bound to be wondering what it is going to be like when you are 83 and struggling with a teenager.  You probably need to find out as much about your grandchild's 'case' as you can and find relevant people - there are bound to be many connected with this site - to answer specific questions that arise.  You may need to ask yourself if your taking physical care of your grandchild is the best resource you can offer.  Can you offer to pay for additional help when your grandchild is with you to do those things that no 73 year old should, perhaps, be asked to do?  Or can you find volunteers, even a local association which might take you to some extent under its wing?

    You love your daughter and your grandchild.  Maybe you feel at times that the latter is actually quite hard to do, maybe at times you think you 'hate' him.  I know there were times when I became furious - when I'd spent two to three hours intubating and tubefeeding, only to have her bring up the lot, meal after meal after meal, when she would cry out in pain and not be capable of reassurance because she understood nothing, and not be capable of ever telling you where the pain was or what it was like.  But if you feel that kind of anger at times, remember it is the condition, not the child, that you are angry about.

    Forgive yourself your weaknesses, love your child and her child as best you can, do what you can and, I would suggest, do it honestly.  It is better to continue to struggle with everyone knowing you are struggling than to pretend not to be struggling at all - if that makes sense?

    I hope some of this may be helpful.  Forgive me, please, if it is said out of turn.

    Warmest best wishes,

     

  • Hiya, 

    Just wanted to point you in the direction of our content on understanding behaviour. It may not answer all your questions but you may find some helpful advice. 

    http://www.autism.org.uk/living-with-autism/understanding-behaviour.aspx

    And you may also want to call our parent to parent line. There you can speak to other carers about how you are feeling and pass on details of the service to your daughter as well, may help to vent how you're all feeling at times. 

    http://www.autism.org.uk/Our-services/Advice-and-information-services/Parent-to-Parent-Service.aspx