NF1 diagnosis out of the blue for 10 year old DS

[djmama]

Hello there, 3 months ago my DS was diagnosed out of the blue with NF1. I was in shock for a month, spent the next two months boxing it away, and now I feel I need to finally make contact with other parents who may have experienced the same kind of thing. Has anyone out there had a similar story? One of the big issues for me at the moment is that we've decided against telling him for now, to avoid him experiencing the kind of anguish and anxiety we've been through on finding out. He is extremely inquisitive. For example, he's obsessed by WW1 and has watched every single BBC doc on the subject, reads factual books about the battles, reads and writes WW1 poetry, and is always on the look out for new info! If I told him about NF1 he'd launch his own online investigation and within seconds he'd find all those terrifying images and, I imagine, be devastated as we were when we first researched it online. (I can no longer look). And to protect him, I've told only one mum at his school, in utter confidence. The flip side of this is I feel I can't really talk to the mums at school now because I have this huge issue - and grief - that I can't share. I saw the SENCO at school today and again we discussed the issue of whether to tell him or not. There are a number benefits - just one of which would be understanding from other parents and kids, which, tbh, would be helpful for him, but the other issue is, I'm simply not in a positive enough space to give him the news yet. I need to feel robust enough to give him strength and positivity to face it. Oh, the other thing is, I keep hearing all this liberal stuff whenever I have NF1 associated meetings, such as, everyone's advised to be as honest and as open as possible etc, etc, but I feel it's different with a late diagnosis out of the blue. And I guess it's a pretty personal decision. So, I thought I'd check out Mumsnet to see if anyone can share their experience. Please??!! Thank you! x

It's hard when you first get a diagnosis. I can't personally see any benefit from hiding a NF1 diagnosis. Better to tell your DS now, when you are still his primary carer than in his teenage years, when he could well be rebelling and refusing your support. I'd feel particularly uncomfortable that teachers or another parent knows -these things have a habit of spilling out.

DD1 has a brain malformation and she's known since she was diagnosed at 3.4 years that she has a 'poorly brain'. She's quite proud of it!

How difficult for you to have found out out of the blue. I think we all go through a grieving process when we find out our children's difficulties. I agree with zzzzz that telling him in the holidays would be a good time. Perhaps going on line with him after you've told him. Let him know that although he has it, people are affected in different ways. We have a family at preschool with NF1 (mum and two boys). Both boys are affected differently with the younger one not showing many issues (as yet!) The neuro foundation website has some good fact sheets which may help.

We told our son about his autism as soon as we had the firm diagnosis around 6.
Good luck

Hi

I agree with what everyone says. It's better to tell him now than in his teen years.

Regarding parents etc- you do not need to tell parents etc about your child's diagnosis... At the end of the day it's private, like certain things in your life are private and only enclosed close friends family, health professionals etc.

I think having a special needs child's regardless, you will feel like you can't talk to other parents, even if they do know about your DS diagnosis, because they simply do not know n awful lot about it.

My DD (7) has a different brain condition which was recently diagnosed and for which she had major surgery this year. I recognise a lot of your struggles about what to do, but didn't have the complication that she'd go off researching on the internet. It does sound tricky! I think that you will cope better when you know that he knows. Is there any way that you can tell him without giving him the name/term just now so that you can have a basic talk without worrying about the internet. I wasn't always 'a rock' when having these type of conversations with my DD, but I found that she didn't seem to mind that I cried infront of her, and being honest about my feelings meant that I actually became more of 'a rock' in time.
It is helpful for more people to know but like adrianna22 said, that doesn't necessarily mean that they will understand a lot of what he has to deal with. What has surprised me is that I've not found that people gossip about this so I've just told people as and when - and it has definitely got easier with time. Other children are hugely accepting, but have no concept at all of an ongoing condition though.
Are there any NF1 forums or groups that you can join? My DD's condition is very rare, but with FB I've found a lot of good advice and understanding.
Wishing you and you DS all the best.