Following on from the thread started by Rebecca about her m.s. upsetting her little girl. Telling or not telling the children is a complex issue. When the genie is out of the bottle it can’t be put back.
Once the children are told there comes the issue of how much involvement the children will have in someone’s m.s.
I know of someone with m.s. who makes a point of letting her twin 8 year olds see her inject herself with her DMD, another person may do this in private. One person may say he/she can’t do a certain activity because he/she is unwell another may go into detail about the m.s.
What we must be wary of doing is second guessing what is going through the child’s mind. It is easy for us to put adult intepretations and labels on children’s feelings and emotions. We may be wrong!
We may expect a sympathetic response and indeed this can sometimes be ‘manipulated’ by a parent. There is also the other side of the coin where a child can hate their parent for having m.s.
It is upsetting for a child to realise a parent has something ‘wrong’ with them and the parents problem is they can’t reassure the child about how things will pan out because they themselves don’t know.
It is asking an awful lot for a young child to be able to undertand this.
Children do not come with a manual, being a parent is a 20 year apprenticeship. We as adults are the result of our upbringing, experiences and education. My children, now grown up, were parented the best I could do. Sure I made mistakes, sought help and advice and would probably, with hindsight, do things a little differently but I do not bash myself up over it. I always answered any questions truthfully in an age appropriate way. I suppose my children were brought up knowing all families are different as we fostered many special needs children, some with complex health needs, some children were with us for overnight stays some stayed 5 years. My children asked lots of questions and probably because they were one step removed as they were not actually brothers or sisters took the information on board in a factual way. I guess there are no rights and wrongs just different ways and the people who know a particular child best are usually the parents.
Zetland is right - it is easy to second guess what is going on. We had a foster child show a social worker a picture he had painted - the social worker became concerned that the picture was painted in black. The simple answer was it was the last painting done and I was clearing up and had removed all but the black paint pot. Had I not given this information no doubt they would want to refer to therapist. What I think I mean (foggy at the moment) is keep all channels of communication open.Children generally live in the here and now and do not think too far ahead, unless it is discussing the number of sleeps until Christmas!
I personally think truth is the key, don’t want to be accused of lying when they are older. My oldest is very like me in Personality he likes understanding things. Like when my mum told me Santa wasn’t real I wasn’t upset he wasn’t real I was upset my mum had lied to me. As an adult we spoke about it and she said she was shocked by my response My first relapse left me very unwell. As did the second I couldn’t ‘hide’ them from him. He asked why I stopped breast feeding his sister and I just said the doctor had gave me medicine and it could hurt willow. When I was allowed to drive again he asked if I could feed willow again and I said that I couldn’t because my milk had gone away. Which lead to an interesting conversation. I don’t lie I just omit stuff he doesn’t need to know. I haven’t went into too much info he just knows I’m not able to do everything I used to. But instead I tell him if the toy rooms tidy we’ll do more jigsaws, play dough colour in etc. He is extremely close to my dad so gets to do plenty of activities with him. From gardening to golf, to painting to plastering. He knows the code for my phone and I’ve added mums photo and my dads so he knows how to phone them if a bad relapse happens. However he doesn’t know why I’ve taught him it. He has an iPad and I told him he’s got to learn his numbers and I was going to start locking his iPad. So I’ve killed 2 birds with one stone he now knows his numbers and knows how to get into my phone. And often he wants to phone my parents for a chat about his day so I let him do it myself. I hope he doesn’t need to use it but I know he can if he has to. I certainly don’t believe in scaring him. I just tell him how much I love him all the time x
Hi, my 2 girls were all grown up and had flown the nest when I began with mobility probems and spasms.
Athough an adult, my eldest had real trouble facing the fact that mum wasnt well. I felt I had to hide my walking stick and limping…until that became impossible. She was angry…not at me.but at the illness…but it felt personal and we had trouble discussing the subject…she wanted it pushed under the carpet.
Then when grandchildren came along, they seemed to simply accept that grandma was different…but the rides on my scooter and wheelchair were great fun.
Now they are 15, 2 at 11 and a 5 yar od.
The little one, when she was 3 ish, found a photo of me standing and brought it to me and said, Banma........you (pointing to me) and this (touching my wheelie) tand up Banma, tand up! Bless her little heart…all I could say was, Sorry darling, Banmas got poorly legs now`. There were other times when she asked me to sit on the floor with her and play.
Yes, it broke my heart not to be able to do that and to watch while her other grandma did everthing she wanted.
Its a cruel ba****d. But we are stuck with it! Plus if I do have hereditary spastic parapesis, theres a chuffin` 50% chance of my lot developing it.
It’s just me and my daughter and we’re very close. She was 9 when I was diagnosed and to be honest, it was impossible not to tell her as I was in and out of hospital, off work etc and she knew something was going on.
When I was diagnosed I sat her down and explained it to her and she was worried initially but now, over a year later, it doesn’t bother her a bit.
We joke about it a fair bit and when I want her to do something and she protests I always say “but I have MS”. She knows it’s a joke and not a guilt trip.
I expect her to pull her weight around the house but no moreso than any other child her age. She’s seen me inject DMDs and take tablets and she’s come to hospital with me when I was having steroids. It’s not something I’ve specifically chosen to do but I think nothing of taking meds in front of her and sometimes I have nobody to mind her when I need steroids so she tags along. Last time she lay down on the bed with me and fell asleep.
I don’t think she’s been affected in any major way by any of it. She’s a happy and healthy and content little woman.
I am a great believer in honesty. I don’t flower it up, nor do I brush it under the carpet, I just tell my kids like it is. Because it is what it is. The older ones are fine, to the point where they make a joke out of it, and the little one sometimes says things, like I mentioned in a previous post, but I generally she is great about it. But it isn’t the right thing for everyone to do, but it is right for my family x
I think if/when it comes time to tell my children I will be honest with them but not be too honest with them - just because I (might have) ms, it shouldn’t take their childhood away from them. I feel they should know what is happening but not every detail.
Hi Zetland I took the choice to tell my son as he was getting more upset and worried of not knowing what was happening to his mummy. With my first episode I lost the feeling in both my legs and feet, I was in hospital for several weeks and when he came to visit he kept asking me if I was going to die. As in his wee head he seen me unable to move and get out of bed, he thought his mum was dying. No matter how many times I reassured him and other family members telling him I was going to be alright, he would get upset and cry everytime I went to the hospital. He had a fear that I would being going in and not coming back out. I spoke to the MS nurse first as I didn’t want him upset him by telling him either but honestly it’s the best thing I have done. We read a book together about MS and after we read it he said mummy your not going to die and I hope the doctors make medicine to fix you. It’s different for everyone and their personal choice but I believe I did the right thing for my little boy. Polly x
In my experience, I have found honesty works for us but only on a need-to-know basis. My eldest daughter is 14 and she came to me in a state one day and asked me to tell her the truth about what was wrong. The poor wee soul had realised that I was poorly and had assumed that my cancer had returned and I was going to die as I was so unwell! When I explained MS, Fibromyalgia and my symptoms to her she was relieved and I have managed to discuss it with all 4 of my children now and helped them to understand. I am very careful about the words I use and dont go into details but on the whole, my children are happy that whatever is wrong with their Mum is not going to take me away from them. Children always know when something is wrong and poor Hazel imagined the worst case scenario, the truth of it is actually not as scary as what she had imagined when I was hiding it from her xx
Hi, Children are far more resilient than adults give them credit for. Child friendly honesty has worked for my son as his imagination and anxiety would be far worse than us talking through things as and when they happen. Once he realised that I wasn’t going to die from it now, he felt better, children get very scared about parents dying, leaving them. He calls it my M&S and he wishes I didn’t have it, he is 8. The way I try to deal with it is to be his inspiration, i.e if he were to develop MS in the future he will remember his Mum doing her best. I am still his Mum, I raise him as best I can. I do everything that most mums do but fatigued/slow etc. he knows I take injections, he knows I have a Nurse and a Doctor who look after me. I am honest in a way that doesn’t frighten him but empowers him to know that yes Mummy is ill but she has a positive attitude and Doctors to help with my body. I want and need him to see MS in a realistic way but to live in the here and now because no matter how much I kid myself, MS could well be his future and it is my job as his sick mother to minimise the impact of that fact. Sam
The answers to my daughter’s questions are truthful. I do not answer them the same way as when I’m asked the question by an adult but it’s the truth she gets. It’s a censored, truthful answer.
I agree with Rebecca My daughter is 5, I’ve had MS longer than I’ve had her. She sees me inject if she happens to be around when it’s happening - but I certainly don’t make a particular point of it. We’ve always answered any questions honestly ‘why does Dad have to open all jars?’, 'do all mams not drive? And so on and so forth. My siblings were around at my very worst relapse, my sister was 10ish, my brother 3… I think they don’t see it as being a ‘big deal’ just now things are for me.
What has struck me is that the older the person is when we tell them we have m.s. the more upset/distraught they become.
Is this because the younger ones have a greater capacity to process/understand the information or is it because they simply don’t have the mental maturity to understand.
Zetland… my children don’t have to deal with the " full implications" of my illness!! I am, first and foremost, a good, responsible mother and my children are the centre of my life, not my MS!! I have MS but it does not have me, it does not control me or my family life and it certainly does not hurt my children as I have not allowed it to. I have been truthful with my family as I do not believe in lying to children but I have definately not scared them with details they are too young or vulnerable to accept. I feel that all of us who are living with illnesses and disabilities have enough to deal with in our own lives and all we can hope to do is get through it all the best we can, I personally could do without coming onto this forum, which is supposed to be a source of support and understanding, to be told that I am hurting my children by someone who has never met me or my family and therefor has no idea what we are capable of!! In short, we all have enough in our lives to challenge us without having extra guilt heaped upon us.
Hello zetland Can I ask one question? Just a yes or no will do. Are all these questions about children and how their thinking anything to do with what’s happening with your daughter. You must be feeling pretty frightened at the moment. Just talking about your feelings to us or someone else may help you. Sorry, if I’m wrong zetland. Take care xx
I may be sticking my neck out here, but i dont (or hope) Zetland hasnt meant anything wrong or nasty by the questions about children and telling them about MS.
But I am hoping this thread doesnt go down thw route of some other unpleasant ones we`ve seen.
Questions on hard cold paper, or a pc screen, can be misinterpreted when use of the voice isnt able to accompany them.
I hope Zetland can give answers to those asking questions.
She knows it’s a joke and not a guilt trip.