Children of those with MND

[Christopher]

Are there any support services for the children of those with MND to talk to; or that can talk to the school where a child goes?
I have a son who is in his final year of school. His most important year, some might say. He has become more absent from home recently (as it is just me and him as my other children have long since left home).
I spoke to him recently about it and he said "you don't know how horrible it is to see someone crumbling in front of your eyes". There is little I feel I can do to help. He has a long school day, he leaves at 07:30 and gets back at about 18:20. I don't see him in the morning and then see him briefly in the evening.
Is there somewhere I can be directed to that will be able to offer him emotional help (I suppose they used to call it Pastoral Care).

[AngieCanuck]

Christopher, this is such a hard part of having ALS. I have a daughter, just turned 9 years old this past week. I reached out to the ALS society (Canada’s version of MND association) and they recommended a wonderful child therapist that works with anticipatory grief. The sessions are virtual, so perhaps available for your son. The psychologist is called “Andrea Warnick Consulting”. From what I am learning, it’s best to be as honest as possible, but in an age appropriate way. Check out this website, it’s from the ALS society of Canada. It has pdf guides for children affected by parents who are ill. Go to this website, and select “What is ALS” in the menu. You will find “Resources” and “For Youth”. They have many pdf support documents, and one for teens. I tried attaching the pdf but I couldn’t.

https://als.ca

[shelly21]

Christopher maybe enquire with your hospice. Also mnd association.
maybe have time at the weekend when you watch a film and then make time to openly chat.

The schools normally have people to discuss these sensitive issues x

[shelly21]

https://www.rainbowtrust.org.uk/support-for-families

[Christopher]

Thankyou AngieCanuck and shelly21 for your advice.

[Ellie]

Christopher My kids were supported throughout primary and secondary school by Pastoral Services/Counsellors and also through the hospice.

Your son is maybe 15-16?, so he may very well have seen a lot of info about MND online, but talking openly to him about things can really help.

You/he may find reading the MNDA's pages helpful: Support for young people

[Christopher]

Thank you Ellie for your constant positive advice.

[TinyLady]

Christopher- sorry to hear how hard it is hitting your son. My daughter is also in her final year at school doing A levels. I'm not sure she is receiving any support either, although the school are aware of the situation. She seems to be coping quite well, but I also worry that they need someone to talk things through with don't they? xx

[Christopher]

Christopher- sorry to hear how hard it is hitting your son. My daughter is also in her final year at school doing A levels. I'm not sure she is receiving any support either, although the school are aware of the situation. She seems to be coping quite well, but I also worry that they need someone to talk things through with don't they? xx

TinyLady
Yes, my other worry is that when they email to say that my son is behind with something I feel so guilty as I can't sit over him. I also don't want to create a barrier between us when there is no indication of how long might be left. Don't want last memories to be of a nagging Dad, also want him to maximise his potential.

[TinyLady]

Christopher - it's a tricky one. I must confess with my daughter I don't have these issues. She gets on with things and I haven't nagged her about homework for many, many years. But I'm sad I can't help her more or take a more active interest.

One thing I do know though... success to me isn't measured through a job title, qualifications or the admiration of others. Success is finding a path in life that makes you happy, brings contentment and meets your needs. Just my thoughts...

[Christopher]

Christopher - it's a tricky one. I must confess with my daughter I don't have these issues. She gets on with things and I haven't nagged her about homework for many, many years. But I'm sad I can't help her more or take a more active interest.

One thing I do know though... success to me isn't measured through a job title, qualifications or the admiration of others. Success is finding a path in life that makes you happy, brings contentment and meets your needs. Just my thoughts...

Thank you TinyLady
Yes it's happiness that I want for him. His older sibblings have flown the nest and found paths that they are happy with. He is the one seeing me crumble, so he has the most pressure and my situation is not putting him in the best of places to be happy. Focus of my day is being up for when he gets back in the evening so that we can eat together. Chicken Korma today.

[TinyLady]

Christopher - both my teenage girls are still at home and I worry about how it must be to watch me decline. Especially after years of chasing diagnosis and being fobbed off. I feel precious time was taken from us. But if it troubles them they tend not to show it and generally we still laugh about things like we always did.

We had a sneaky takeaway. Was just Abi and I and she needed help with an outfit for a concert she is playing her cello in tomorrow.

[Tabbycat]

Christopher my son is 16. He does have pastoral care available to him at school, but I'm not aware he has used it. I have made his school aware of my diagnosis.

He also attends a youth club which is a great place for him to just be with his friends and enjoy himself, although getting him there has been tricky as I can no longer drive and rely on the goodwill of others.

It is heartwarming how much goodwill is out there ❤️

[Claireflo]

Hi Christopher I can't really offer any advice on how to support your son. This illness so hard for those diagnosed but also hard for those watching the effect it has on loved ones. Are there other family members or can the older siblings provide some support? I'm sure he appreciates the effort you make to have meals together.

[MMG]

We sought help for our grandson who has lost a few key family members this year so believes that any illness makes you die. He is only 4.

The hospice referred him to their children's counsellor but then advised that the waiting list is very long so tocontact his school. We are told that every school should have bereavement support in school- and for anticipatory grief.

He was initially seen within a couple of weeks and now has weekly 1:1 age appropriate sessions.

We have been honest with him throughout (incomplete terms) and I do appreciate that a 4 year old needs are very different to a young adult - but the helpshouldbe there in school.
x