Disability in DGD

Oh dear, what a terrible situation.

I found it very difficult as a teacher when parents are in denial how much harder must it be when it's your DD and SIL.

Are they in denial that your DGD has NeuroFribroMatosis type 2 or that it's something that she will have for life? I guess you've been on

www.nfauk.org/what-is-neurofibromatosis/nf-type-2/.

Have you rung their help line to see if they have any ideas? I'm sure you won't be the only grandma in this situation.

Presumably the child's GP will tell them (or has told them) what treatment is available and any risks involved?

I can see that this is a very difficult situation. Her problem is extremely rare and I assume that she has been referred to a specialist team, who should in theory provide all the rehab and mobility aids information that is needed.

Do you have some particular specialist or professional knowledge of this condition or of rehabilitation that makes you feel that not enough is being done? I think that would put a different slant on the problem from your POV.

Otherwise I think it would be wise to let them handle this in their way, particularly because the guilt that parents of children with genetic disorders feel might make them even less receptive to what they might see as "interference."

I can see how very difficult this must be for you; but the last thing you want is for relationships to break down, as this family is going to need all the support it can get over the years to come.

Such a shame the parents are so defensive. I had a little bit of experience of a child with this condition at a pre-school I ran but luckily the Mum was always open to suggestions and support as sometimes there can be subtle learning and developmental issues. I seem to remember that although this is genetic - its not necessarily inherited...i.e.it can just suddenly appear in a family with no previous experience - hence no one is 'at fault'....not that anyone should ever feel that way about inherited conditions its just a miserable fact of life.

Your situation sounds extremely painful granMattie, and I am not sure what advise I can give. Until your SIL changes his attitude I doubt you will be able to influence the situation so perhaps all you can do is contact the relevant support groups and ask for any advise they can give you as a Grandma who is watching from the side-lines. Your daughter is going to need you so perhaps just remaining quietly in the background is the best you can do for her at the moment.

Thanks for all your advice. I'm just sitting back, tying a knot in my tongue and letting them get on with it - just occasionally asking leading questions [I'm a medical scientist].

No - NFM2 was diagnosed at the time of the fracture - no denial there...

Parents are laid back, when I asked about the physio's "home" exercises, I was firmly told that "they were too busy" to make sure she did it daily. That sort of thing.

Seems GP and Health worker a bit useless, as it is a very rare condition. Specialists are good, but with 6-monthly visits, it itakes a long time for anything to happen - and at that age [now nearly 3], things hurtle along and opportunities missed are tragic.

PS parents always prefer taking advice from strangers. ANd with SiL's history....

It's almost 'Mission Impossible' for you isn't it grandMattie
That must be unbelievably difficult for you and it's a very strange attitude to the exercises IMO...
Fingers crossed that their attitudes will change, hopefully soon.
((hug)) x

Thank you all so much for your encouragement. It is mission impossible as you all say - but, holding my tongue and gently asking pertinent questions as suggested may well be the best answer.

it helps that they live the other side of UK from us, so changes are very obvious!

When my children were little I used to tell them that "A Mother's place is in the Wrong". Seems that a grandma's place is even in the "wronger"...