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

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,

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,