How on earth do I explain to my ds that he's disabled forever? (sorry, long!)

[IreadthereforeIam]

My ds1 has Spina Bifida. He's 7, he's able to walk with splints, but is slower than his 4 year old brother and all of his friends (although he does give it a good go, and has had to have his splints re-inforced, due to bending the plain plastic ones ). He's doubly incontinent, is still in nappies, and we do intermittent catheterisation and Peristeen (basically a bowel washout - he can't poo on his own - or soils all the time).

I've always thought he was coping well with what life has thrown at him. He tries everything - we've never told him he couldn't do anything. He 'runs' around, plays with his brother, his friends, we go walking in the mountains (for which he does need some help, but he still tries).

At dinner yesterday, he asked me how long he would have to do his Peristeen for - to which I replied "Oh, about an hour" (which is how long it takes). He got rather annoyed with me, and said "No, how much longer will I have to do it for - when will I stop using it?". I tried to explain that he would probably always have to do it. He than said "No, when my scars on my feet (he's had surgery on his feet) and on my back have gone, I'll be all better and won't have to wear my AFOs or do Peristeen and catheters anymore". I tried to gently explain that he had a life-long condition (obviously not quite like that!!), and he started crying (you know, that angry crying). So I just tried to distract him from the whole conversation and started talking about something else. But I know this is going to come up again (and keep coming up). We've never glossed over anything with him - always told him the truth, and we've always told him he'd ALWAYS have Spina Bifida. To be honest, I thought he'd understood, but clearly not.

I know everyone on here has children with Special Needs (that's why we're here), but how do I explain to a 7 year old child that he has a condition that won't go away - that in fact, might get worse as he gets older (we know he'll have to have surgery on his bladder and his legs before he goes to High School). I don't want to lie to him - he's very bright, and he'll know. And I don't think he deserves to be lied to.

I'm just so confused and sad. Just when you think you have it all covered/ dealt with, something always comes up, doesn't it?

I have no advice I am afraid, I have never been in this situation.

I didn't want to read and run because I reallly feel for you and your Ds.

I hope someone will come along who has experience of your situation and can help you.

Fwiw, I think you are right about being honst with him and you sound like a great mum.

I cant answer your question either I'm afraid but are there any support groups you could turn to for some advice and help. I wonder if he would be receptive to meeting an adult with spina bifida to hear about how they coped, how they felt growing up and all the positive things in their life so that he can see for himself that whilst things will never be normal there is still life ahead. It will also help him realise that he is not the only one to go through this which probably feels very scarey for him right now unless he happens to know others in his situation.

Poor little chap, it must be so frustrating at his age not understanding why he is like that. Keep going with it - Ineedalife already said it, you sound like a great mum.

You poor thing - what a hideous conversation to have to have.

This isn't anything like in the same league, and probably seems really trite, but when the penny dropped with DS2 that he would always be Dyspraxic, and that it wasn't something that would suddenly go away, I said that if being Dyspraxic was what made him as smart and lovely and wonderful as he is, then I'd always be glad he was Dyspraxic. He wasn't convinced - but I was trying to make him see that the Dyspraxia was a part of who he was, and had given him something (strength of character, determination) as well as made life more difficult. Does that help at all? I know it doesn't really translate to what your DS is having to cope with.

There's no guarantees, but we're seeing progress with research into possible solutions for some of this with spina bifida. In five years there may honestly be sensible alternatives to some of the things he's finding difficult. There's research from China showing an 87% success rate in restoring some bowel and bladder function, for example www.jurology.com/article/S0022-5347(10)03053-3/abstract

If this is the early attempts, I reckon it could improve.
Not an answer for now, but a bit of hope for the future?

Thanks for your replies, everyone. We do know a couple of boys locally - one of whom is the same age, and the other is a year older. We used to see a lot of them, but for one reason or another, we don't see them as often any more. I think ds found it hard to relate to them because they're in wheelchairs, and he isn't (it's quite unusual that he is a walker, tbh). I'm in contact with ASBAH (Association for Spina Bifida and Hydrocephalus), and they've been helpful in the past, so it might be worth contacting their regional rep.

Hassled, ds was recently diagnosed with Dyspraxia, too - which his neurosurgeon said could just as easily be explained away as a 'touch' of Hydrocephalus. He's clumsy enough with the restricted mobility, and then he has the added bonus of all the things that Dyspraxia adds into the mix (problems with sequencing, catching/ kicking balls, knowing where his body is - if you know what I mean, low muscle tone). He has been getting very frustrated with all of that as well. School have been very good at helping out.

Amberlight - thanks for the link. Who knows - perhaps something will happen in the future in this country, but I won't hold my breath. I had a similar conversation about bladders with ds's Uro-consultant, and he said this country wouldn't get involved in this kind of stuff so early on - particularly with children (which I'm ok with - I don't fancy ds being a guinea pig - he sees enough of the inside of a hospital as it is!!). But I'll be waiting for when they've sorted these things out!!

Thankyou all - I just needed to get it off my chest really - I don't have much of an opportunity to speak to anyone about these things. The mums I know who have children with SB and Hydro all have children who have it more severely, and I always feel that I should just keep my mouth shut, because I should be grateful he's here and well at all. I don't want to sound ungrateful - I love my son as he is.

You don't sound ungrateful. You sound like a mum who loves her son deeply and wants to do her very best for him.

You have answered his questions honestly but not bombarded him with information. That is the best thing you can do. I know it's hard to see him hurting but try to think of it as a process. He is accommodating this new information and it will lead to him accepting what the future holds for him.There will be a day when he is at peace with the idea that he will always have different challenges to cope with.

I have worked very closely with young adults with Spina-bifida and Hydrocephalus and they had all come to terms with their continence issues and their mobility difficulties. I think that you may find he gets more support from spending time with other children his own age who have similar disabilities, especially if that time can be away from parents so that they can speak freely. It's amazing how frank these children can be and how much they can benefit from such conversations. I think I would find out if there are any support groups or children's activity weekends he could attend. I'm sure ASBAH will be able to point you in the right direction.

Good luck.

No - perhaps that what I need to do more of. ASBAH have some local get togethers, but dh doesn't like going. I think he's going to have to own up to the fact that his son has a disability - he doesn't like to think it (although he's not completely head in sand, and is the one that always seems to take any bad news the best, to be honest. He just doesn't like broadcasting it - his words, not mine!!).

I had to have a similar conversation with my ds who was in year 5 or 6 at the time, I was more upset than he was, he had also thought he might grow out of it esp when a TA at school said that she knew someone who grew out of a similar condition (well, it wasn't similar at all and no hope of my ds growing out of it).
In tears I told him that he will not grow out of it and I also said "believe you me, I am doing all that I can possibly do to help you to lead as normal life as possible and will leave no stone unturned in finding help" and more along those lines.
I would also say that you need to keep v open mind and look for help from all angles as drs don't know everything. Despite grim drs prognosis confirmed by genetic testing, in my ds case nutritional approach made incredible difference even though this advice didn't come from drs. My ds prognosis also was progressive deterioration but we managed to slow it down, the way I was thinking was that if something is making it worse, then I will look for what it might be as it could perhaps be possible to slow it down. It took me years, but it was worth it.

I don't think you have failed to explain anything: I think he is going through a phase of refusing to accept what life has done to him. And tbh I think it is reasonable to expect that he will go through such a phase of being angry because life is unfair. Both my children have done the same, and so have friends of theirs who have suffered in other ways (bereavement). Trying to make him see that his disability is really a normal feature of human life/part of what makes him him etc etc may well make him angrier still: he knows perfectly well that you or his mates or his teachers wouldn't want his condition as an optional extra.

Yes, seeing other people coping with the condition can help, but I also think it is essential to admit to him that that you know that he is inconvenienced compared to most people and that he has a right to his feelings. To say openly "yes, I know you've had a rough deal, you will cope better and better, we will help you as much as you can, but there will still be times when you feel angry and that's ok".

Sometimes I think there is too much expectation on disabled children to go through life like Pollyanna; there must be some halfway house between "I'm so happy, I'm happy", and turning into a bitter old grouch.

Ds has taken a couple of years to work through his anger over his chronic joint condition and is just coming out of it (he is 11 next week). Counselling helped. Time helped more than anything.

check out the efds website for positive stories about children with disabilities taking part in sport or contact me directly for my views about how sport has influenced my childs life
sorry it's late and message a bit garbled but wanted to mark the spot x