When/How did you come to terms with your dc's SN?

[mintyfresh]

2.5 years on and I still find it so difficult to accept what happened to my dd (starved of oxygen, brain injury at birth). I want to know how she is going to be when she's 18 and no-one can tell me but know this is irrational in itself. I find myself ever more resentful of my friends who are not going through the same worries.

Please tell me about your strategies for coping and tell me it gets easier in time!

Thanks for all your posts - it is reassuring at the very least that others have the same internal struggle - although so sad for us all.

Riven - I think it is about the support and follow up. As several of you said too, many of us seem to have been thrust back into the 'real world' without much regard for us as parents and how we will come to terms with things. We haven't been blessed with very supportive paeds or physios either - would just be nice to have an understanding ear once in a while!

Saintlydamemrsturnip - I agree, we are very much in the NT world and I could do with finding other parents facing similar issues.

I know dd will be ok because she is loved and happy so I need to just focus on that and nothing else!

I think it's a long-term process, accepting that all your assumptions/expectations about life have been shattered. (If that's how you see it - don't want to assume that you do, but it's how I felt.)

My DD2 is 2 and severely disabled - she needs constant care, and probably won't develop much further. We're still feeling our way to accepting the situation we find ourselves in.

The things that have helped me are:

1. Having a clear diagnosis - although I know not everyone has that. But establishing why she is 'the way she is' and understanding what we might be able to expect in future has helped a little, in terms of regaining some 'control' of life.

1. Getting as much information as possible about DD2's condition, and what we might be able to do to help her.

1. Focusing on what she can do, rather than what she can't (the antithesis of the dreaded DLA forms and other similar forms of torture) - enjoying her smiles and helping her enjoy the things we know she likes, such as music and bath-time.

1. Having a life outside home and family - even if it's only getting out once or twice a week without them to do something that distracts you and engages your brain in a different way.

1. Finding other parents nearby in a similar situation who understand what you're on about and are facing similar battles with the same council etc.

1. Treating my DD2 as a 'project' - don't mean that callously, but I found I was better able to get the things she needs if I treated the whole thing as a project, with things to do/achieve each week/month - there's a certain satisfaction in ticking things off and not just depending on people getting back to you (or not!) about things. (Which is how I was for too long.)

1. Finding MN - the SN board is a great source of wisdom, humour and strength. I often feel that I have 'taken' much more from it than I have contributed.

I had pretty much come to terms with DD having ASD, then got news that she probably didn't but was presenting as autistic due to something affecting her brain (could be progressively degenerative), which is a pretty scary prospect, so having to come to terms with that now. Being told she has ASD would probably be the best outcome of her tests now, whereas before it seemed like a disaster.

Anyway, though, I'm sure even if we get the worst news, i will come to terms with it eventually somehow, as we all seem to.

i second the Special Kids in the UK recommendation!
fabulous forum, lots of people whose kids have all different disabilities so theres usually someone experiencing something similar and they have a summer camping thing every year, we are going to the Calvert Trust at Kielder with them too!

thanks lingle, hopefully we'll know soon!

It would help meeting others in the same situation. I went to a local support group last weekend for asd. I was the only one with a secondary age child, and the only one with 2 asd dc's. And the only one there with a disability myself. It sounds awful, but I look to Riven and others on MN to keep me sane, knowing I'm NOT the only person in that situation, as I've never come across anyone in RL who is. , , .

It's an ongoing thing, I think.

We pretty much accepted straight away that our DS would have a different life to the one we expected. When they tell you your child is going to die, then you discuss how that is going to happen, then they say....erm sorry, it seems your son has other ideas, you accept anything coz it's way better than the alternative.

That said, DSs condition is ever evolving - first IS, then severe reflux, then the convulsive seizures, then registered blind, then Lennox Gastaut syndrome and every AE drug a failure, then his first status seizure and ambulance trip to hozzie and then a quad CP diagnosis. Throw in numerous chest infections/pneumonia/rotavirus and a bloody lactose intolerance for good measure, and it's more clear that I don't think I really can come to terms with it when you can't get on an even keel.

DS is who he is - we accepted and even welcomed that (rather than never know him) easily.
Cerebral palsy, that's fine, easy to deal with. The epilepsy, well it's just not.

It's a bit trite, I know, but I take each day as it comes and try to give DS as normal a life as he can possibly have. I don't even think about tomorrow, let alone next week or next year. When things are crap, I daren't , when things are good I daren't.
So I don't .

I don't know that you ever 'come to terms' with it. Seems to me that you 'come to terms' with a lot of different realities over the years (DS is 15.5 now, quad cp) and you just have to accept and get on with that reality even though the situation might change in a few years.
First, I accepted that ds had suffered immense birth trauma and was quite badly affected by cerebral palsy. I thanked God that his lungs were ok and that he didn't seem to have epilepsy. (I reckon this took me to age 3).
Then I accepted he wasn't going to be educated as most children are. So I accepted and got happy about his SN school. A fairly stable few years, I even managed to hold down a job.
Then the reality changed and I accepted he needed some heavy-duty surgery so it was the rollercoaster for a couple of years.
Then the worry about secondary. A quiet few years.
Now the (biggest since the first stage) planning out the transition from secondary to college and coming to terms with the fact that all my little dreams about what SN college he might go to aren't going to happen because it's not what's best for him. It's taken me a year to accept that and to begin to consider what might be the realities in two years. It might not be that bad...
All this interspersed with 'extremely proud mummy' moments such as yesterday when he took part in the Under 19-s Boccia National Finals!

Thank you, we were very proud. His dad hasn't seen him play boccia but came yesterday and is now addicted.
Yes we have convinced ourselves that we have a normal life, it's everyone else's life that's weird.
When I was 26 and found out I was pregnant (23 February 1994!, blimey I still remember the day), I thought by now I'd have 4 children, DH would be a real proper businessman, and I would be swanning up and down from Whitehall doing Important Stuff each day and earning truckloads for it.
Now none of that has happened, but I know a lot more about people and life than Whitehall could ever have shown me. And I do do Important Stuff. And I know what's truly important - hence me instructing DH that he must wind up the business as his health is suffering (suggested he get a job doing deliveries for Tesco!)
The last year has been really intense for me but I can now accept that DS is just not ready to make that first leap at a bit of independence, so we'll think about that again when he's 18. Another stage passed through.

This thread has made me cry with recognition and some posters have totally summed up my feelings.. Flying Duchess's comment about coming to terms with not coming to terms is really spot on for me..

I'm beginning to realise that it's not something I'll ever really accept but will just have to weather the stormy times when you're emotions feel overwhelming - trusting that there will be easier times in between.

I find that counselling has helped..through my GP -and talking to friends who get it or new friends with sn kids helps. Some friends whom I was very close to before have been surprisingly hard to be with. I struggle with envying their relationships with their kids..

I have been short with people at times that have started to talk to me about their trivial (in my book but not theirs ) problems with their NT kids and it's been mean of me I know - or I've felt very hurt by someone raving about how fast their child is picking up reading or something.. but I hope that will pass.. Right now I think if they don't understand then I just can't spend time with them much and that's ok for me for now..

Pagwatch said something about if you let yourself think about stuff like the conversations you may have had..that really feels such an overwhelming loss at times - possibly made more difficult by the wonderful conversations I am able to have with my older child.. I am so lucky to have that with him but I look at my DD2 and sometimes long to be able to understand her world more and find it unbearable that she can't tell me stuff - anything really but also what is distressing her for example.

The daily ( and nightly stuff) of caring for her is so exhausting and full on that I find there is rarely time to process anything emotionally (and for me that is not good coz it all builds up then I have loads of migraines! )So I try and sort of build in times to have a good cry. I sometimes have some time when she's at nursery and come home and put a song on I know will make me cry just to release it and then I feel better after.. There is so much loss and grief I find and it comes in waves..

I have a colleague who I told about dd2 and she has a daughter with SLD who is now early 20's. She said if someone could have told her in these early years that her daughter would have been fine and happy as an adult it would have helped her loads.. She IS now very happy doing stuff she enjoys living in accommodation that suits her needs really well spending some weekends and holidays at home. I take heart in that..

Sorry such a long post but just to add - I think it's important to make time for you wherever you can to take care of yourself and think about what you need that will help.. We're not always good at doing that but it's essential I realise now.

did you find it Loudlass?
heres a link specialkidsintheuk the forum is in the members only section so it is a private forum