How do you bring up a child with life limiting illness?

[StiffyByng]

Sorry to be a multiple thread starter and also if this is discussed elsewhere.
DSD has a very rare metabolic disease. It runs in her family and she is the third person to be diagnosed, and the only survivor so far. Prognosis is tricky but it's progressive and in the two years since she was diagnosed she has gone downhill fairly fast. She's now using a wheelchair outside the home and showing the first signs of dementia. She's 12.
She's the oldest of three kids. Unsurprisingly she has major emotional and social issues and displays significant immaturity-during a recent hospital stay non-medical staff thought she was about 8. She has only one friend, a fellow SEN student. She struggles academically but is mostly at the low end of norm
Up to now we have a

Sorry, weird phone stuff. Anyway, to cut a long story short, we currently treat her normally, encouraging her to be more mature, socially to progress and she has a maths tutor. Given the fact that she looks unlikely to survive her teens and that her mental problems mean she may not be able to do 'normal' schoolwork in the future, are we being silly? How do those of you bringing up children with limited life spans deal with this sort of stuff? We don't want to spoil her, or not discipline her (particularly as some of her emotional problems manifest as bullying of DSS) but do we abandon some battles? I'd be so grateful for advice or experience from the amazing parents on here.

My Mum taught a family of kids like this - ony one made it to 16 out of 3. I'll talk to her and come back to you as she was very fond of them so I'm sure she'll have some tips. Can you pm me in a week? (she was a teacher so will only be able to give an "educational perspective", whch may not be what you are after).

I would try and live as "normal" as possible for now, I think. You just dont know how bad it will get in the end, and I guess when she gets worse, you cant then loosen it abit. You need to make her life wonderful of course, but all kids need bounderies, and you need some structure too.
I think you will know when to give up certain battles.
Just my opinion, have no experience.

StiffyByng,
What's the name of the disorder? I have experience of one that sounds similar on the surface.

It's too rare to have a name but it's a mitochondrial disease with similarities to Leigh's Disease.

Thanks for the other contributions. All very welcome, including from teachers.

I was asking because I know of a family with something called Hallervorden-Spatz where deep brain stimulation improved symptoms. I thought it worth asking in case you were describing a similar condition.

If it was me, I would keep firm boundaries in place for things that affect other people, especially DSS, but unless she actually enjoys it, I'd drop things like tutoring and do things she enjoys. Likewise if she enjoyed school I'd keep her there (part time only if it's too much for her) but if she didn't enjoy it, I'd take her out. I would take the view that her life is limited and I would try to make the time she has as good as it can be. I don't know how old DSS is, but I would say he'd either be young enough to be told she's older so it's different rules or old enough to know that she is LL (I presume she knows??) and that he will (hopefully) have a very long life to do things, whereas she wont. (I would also try to find any support groups/fun groups with children in similar circumstances.) Most siblings are quite understanding. It's a hard balance between a child who is LL and their siblings and all you can do is your best, for all of them. Does she live with you full time? If she doesn't I guess you all have to agree on the way forward.

Thanks for the replies. She lives with us full time. Her condition can't be treated unfortunately.
Taking her out of school isn't an option. For one, she's not sick enough and for another, we both work and it just wouldn't be possible. Her consultant has said that if dementia really beds in then a special school would be appropriate. The tutor is because she finds maths incredibly hard and we're trying to support her. She doesn't mind doing it much.
There is a club at her hospital for kids with serious illness and we're trying to hook her up with that.
Her brother doesn't mind at all about any treats she gets as their tastes in such things are poles apart! He doesn't know exactly the possibility because we can't talk about it because DSD won't acknowledge it. We're also working on that with her consultant and a psychologist. In any case, the prognosis is tricky as each person reacts differently.
I'm thinking though whether things like our war on table manners could be dropped for her. And how much stress do we all go through for homework (still tears over everything in Yr 8). We're also plundering the savings to take her on two extra holidays this year.

Sorry, can't give any advice on your situation as my DD has Profound and Multiple Learning Difficulties as well as being Life Limited - so she doesn't know she is any different IYKWIM.
Just wondered if you have a childrens hospice in your area who may be able to give you advice and support. They should be very used to dealing with families in your position and could give you some ideas of which direction to take as well as possibly some practical support. (Childrens hospices don't generally just deal with children at end of life stage - they will provide support right from diagnosis)

That's a great idea. We're near a hospice that I know has a specialist children's bereavement centre so I will try them.

Well, while she's happy enough at school and it's enabling you to work thus giving you all a better life, then I'd plod on with that. If she doesn't mind the math tutoring then it will help her keep up with her peers for the time being. Although, as she's emotionally 8 - I think I would be considering a special school anyway - particularly given she only has one friend and that's a child with SN, she may be happier and make more friends out of the main stream. That would also help with the homework hassle as well. How do you think she would take to going to a special school?

Your war on table manners. What exactly are you battling over? Why is it an issue for you/her? Is she actually easily able to do what you are asking or is it very difficult?

Where are you off to on your holidays? (If you feel you don't want to say in case it outs you - feel free not to say!!).

My feelings are that you should recognise the limitations of the illness but try to treat your child as "normally" as you can. I have worked with many children and adults who have progressive life limiting illness and as a rule you can never generalise how best to approach this challenge, each child/ adult/ family approaches the illness differently.
There are some things that are worth remembering for all of us however, these are.....Celebrate the good times and ride out the bad, make as many good memories you can and make the most of every minute and never say never!
Good luck with this unique journey xx

Thanks, iteasy!

I'm not sure we'd stand any chance of a special school place at present. Her current school say they're keen to keep her 'as long as possible' and are very supportive of her, including pressing forward the statement. Our slight concern is in fact that they are too protective at times, so our attempts to get her to 'grow up' are resisted by them.

Battle over table manners is the usual stuff - use a knife and fork properly, elbows off the table etc. The only bit she finds hard is sometimes finding the strength to cut things, in which case we help, but she is rather lazy and was perfectly happy to have all her food cut up for her by her grandmother until last year (when we found out this was going on) so we're a bit wary of her putting it on. It's all been our campaign to get her to behave in an age appropriate way-her primary school told us it was necessary as she was drifting socially and it's a constant worry that we're pushing when we shouldn't. The knife and fork use in particular was to speed up her eating so she ate more, but now she has her PEG, less of an issue.

Holidays will be Centreparcs and to friends in New York. I am rather dreading doing both with the wheelchair and god knows if we can afford the insurance to the States. She definitely wants to go to Centreparcs but the first time we went, for a weekend, she sulked and refused to do anything and that was when she was walking about perfectly normally. So we'll see.

Sorry, I sound very negative.

Are you registered with your local carers centre? hopefully you have one in your area. I went this week and was amazed at what they had to offer for the whole family.

There are pampering sessions for parents, groups and activities for your dsd and they also run stuff for siblings. They can even provide funding for breaks. They can also signpost you to other orgs in your area who can provide help and support.

Peekaboody, thanks. That sounds a really good idea.

Hi. She has a CAMHS psychotherapist and is seeing a psychiatrist in two weeks to discuss her anxiety and whether to medicate. No social worker although she has seen occupational health and will have a social services review when we move home. Stupid question but what would a social worker do in this situation?

Another stupid question but how does one go about putting a child in a special school? Presumably it's in the statement. Her current school doesn't know about the dementia yet-we're talking to them next week. I think they will freak out.

StiffyNyng - don't worry about sounding negative - it's allowed and frankly, to be expected!! :) It's bloody hard work.

I don't have any advice on what you need to do to get a child into a special school - but I agree with justaaboutisnowakiwi said - have a good look around at what is available in your area (& the area can be quite large as sometimes collections/taxis are provided) - speak to people, find out what is on offer, go and see some and talk to them. They will help you.

As I said earlier - I would worry about her in mainstream now, she's really getting to the stage where she's not fitting in with her peers, she doesn't have friends there and her only friend has SN, it sounds like she would be much better off attending a special school.

Table manners - using a fork or spoon to get to food neatly/cleanly to her mouth (which I presume she is more than able to do) would really be my only criteria. 'Elbows off of the table' type stuff seems to have gone by-the-by for pretty much all families/children these days, don't make your life more difficult than it needs to be.

Thanks for the tips. We're researching special schools and will be raising the issue with her current SENCO in a meeting this week.

Table manners not abandoned in this house! But that was just an example of the daily rows that happen because of trying to enforce decent behaviour. I think we have to keep at it, or her siblings would resent it.

Good Luck with the schools & everything else