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!

I'm nowhere near yet (coming to terms) - 9 months in - antidepressants get me through the day & wine helps me sleep.

The uncertainty is a killer.

Erm the first of DD's problems were picked up when she was 9 months old, and she is consistently collecting extra dx, she is now almost 12yo and I still don't think I've 'come to terms' with it as her problems are constantly evolving. I thought I'd come to terms with the fact that she'd never walk or talk by the time she was 1yo, then at 3.5yo she started walking. It seems like every time I come to terms with one bit of her problems, another comes along. I'm currently trying to get my head around the fact that it's highly possible that she'll never live independantly. Then there's DS2's problems as well...I just try to smile my way through each new obstacle (after I've cried ).

Mintyfresh, my dd1 is 8 years old, she has West syndrome and severe developmental delay. I find the only way i can cope is by living day to day and try not to think of the years ahead. My dd2 really helped as i was able to experience what it was like to see a child develop "normally". I must say my dd2 has also helped dd1 dramatically also.

I don't think we as mums will ever come to terms with our children being different and i find it very hard to make sense as to why my dd has to have a tougher life than other children.

On a practical level i find my part-time job really helps, exercise and realising that there is always someone else worse off.

I don't think you ever truly come to terms with it.. but you do learn to travel a path you weren't expecting, you learn to take things day by day, and even to enjoy life in a way that is different.

That sounds incredibly trite I know. I TOTALLY identify with wanting to know what it would be like, next year, when she's 5, 10, 18... that's exactly how I felt. I couldn't envisage anything but gloom and worry and despair (I was pretty depressed)

My son is 12 now. To be honest I still find every birthday gives me a few moments tears when I think about how things should be (he has three elder siblings so I have very clear comparisons) but most of the time, yeah we live our lives..and his existence has taken the whole family along paths we might never have trodden.
I now work in my son's special school, with severely autistic children . My summers are spent camping with internet friends who I met thro our shared need to meet others in the same boat.. I have made friends I would not want to be without. My children have grown into fantastic young people who accept and understand disability..

And my son.. well yes his life IS different.. ( he has moderate LD and autism) but HE's not sad about it..he sees the world his way and we embrace his world.

It will be ok...

In the short term.. seek support from those who will 'get it'.. here, other internet forums... make time for yourself; (it's easy to end up being chief carer, head cook and bottle washer and just be worn down)..
wine..
chocolate..

The grief and resentment does sort of pass.. it really does, although it pops up now and again..

It's also easy to forget that friends whose lives seem unfairly easy now, may have heartache at different times.
My youngest son dropped me into the world of disability.. but my able, beautiful, high achieving 15yr old daughter has struggled with eating disorder, depression ..parenting her has brought a whole different level of heartbreak.. you never know what lies ahead for anyone, and resentment takes up energy...

Hang in there..it WILL be ok

I came to terms with it when ds1 was about 8, 6 years post diagnosis.

I had taken him to the middle of Dartmoor (my favourite place). Just me and him, and we sat and had lunch. I looked across at him and he was getting as much out of the experience as I was. At that moment I felt it didn't matter that he will never speak/live independently/walk down the street alone etc- because providing he has someone to help him he can get as much out of life as any of us.

Yes we still have difficult days, but I try to make sure he gets lots of different experiences. Even if they go belly up - we try!

Still not there, 1 year post dx, now 4.2 and heading for special school in Sept.

Although we have known for sure DS was having difficulties with language by the time he was 2 and that he was quite a different child.

It came as a shock when his problems and differences were for the first time identified by paed as 'mild asd'. This was last year in april.
It took a few days to really sink in then it hit me very bad.
All last year was full of ups and downs emotionally. Having a bad time with it all atm, but generally feeling a little better with accepting that DS's asd is maybe mild but it's here to stay.

I also ask myself a lot of questions about the future. Will DS ever fit in? will he eventually catch up with all his delays? or not? will he be able to live a full life independantly? ...the not knowing is hard. And the tears on a bad day are many. Time is a healer we just have to wait... hugs to you.

FD, sooo going to have to steal that line, the 'come to terms with not coming to terms with it' one. That was what I was trying (badly) to say.

How long is a piece of string, what colour is it, how much will it expand when it gets wet, and how long will it take to unravel?

think for me was couple years ago .had gone to spend weekend with a very good friend my first time away without dc and first night I just burst into tears not quite the night we had planned
luckily he has 2dd with asd so could understand what was going through .

oh and he is still a very very good friend and great support .Just need him to be this side of the pond would make life so much easier but understandily he loves his DDs so much would never leave them

I've long thought that there should be a study into PTSD after the birth or dx of a disabled child. So many parents seem to re-live the trauma for years. There are studies into PTSD after traumatic births of 'normal' children, but I've never heard of one for us.

DS is 13 and I was absolutely traumatised and desperately lonely for about the first 6 years. Things got better when:

• I had DS2 (very healing)
• our respite package improved
• I found a group of other parents with disabled children, (oh why the fuck didn't it exist when DS was tiny?}
• I left my stressful job and changed career to something entirely unconnected with disability/illness
• DH and I went to relate and stopped arguing all the time

I still feel uncomfortable with DS1 in the Norm world but part of me loves that we are different

All of your answers could be me too.

Do we really "accept" it or is it acceptance of the fact that our lives are so fundamentally different from our friends? Acceptance seems to say agreement to me.

Maybe its not that it gets easier to "accept", but that I get better at not showing the disastrous big hole inside me. I fundamentally don't accept it - I wish it had never been visited on us, but it has, so I have to get on with life.

I totally agree DonkeyDerby that it is a kind of PTSD.

And having other children really does help normalise our lives.

Not sure I have, sorry!! DD was born fine, a twin, had Meningitis at 8 moinths, suffered Brain Damage and is now 8 and a half.

things have got easier

I had counselling and am on AD

But DD is very hard work and I still think why us and its not fair

But, again, it has got easier, she is doing far better than expected

sorry!!!!

But everyone is different. Another Parent I know with a child with SN is always so ubeat and positive, her son is now 7. She just gets on with it

One year on & every day is a challenge,I haven't comes to terms with dd2 disability,but I am trying.
We have as yet not had any dx,which makes it hard.Progress is slow & the futures just one big minefield I try not to step in too often.Even nursery in September is scary prospect I dread.
I am always thinking what could have been even though I know I shouldn't.
My dd2 is a beautiful,happy little girl & I am so thankful to have her.

Interesting points. I think it is much easier to come to terms with if you are around others with similar issues - (life became much easier emotionally when ds1 moved to special school), if you have access to non-disabled time (respite, respite, respite) and if your disabled child can access exciting, fun activities (surfable, horse riding, etc have made a huge difference).

we are 13 years since dx and it can still be very hard at times to accept especially now he is 16 you look at all the other teenagers and feel so sad sometimes thinking of all the things hell never get to do but he is HAPPY and healthy apart from his asd and that is all that matters. The future is a scary scary thought though

I think I changed a gear when I (like MrsT) had a moment when I looked at DS2 and laughed and just loved him without regret, without sympathy/pain/sadness etc etc.

He just made me really laugh and was laughing back at me. I realised that he is a really nice kid and very happy, he is so much fun to be around and totally lovley.

I think in the early years I loved him in a fierce defensive way. I was protective and anxious about him - which is tiring and not quite what we do as parents usually.

I think I have come to terms but I think that means different things to different people.

I view my life as happy and as positive as most.
I view his life as happy and meaningful - not a lesser version of normal existence.
I love him warts and all - farting,nosiy, handsome, stroppy, loveing, sweet, humourous ..just like the other two

But if I sit and think of the person he could have been, the talks we may have shared, the things I would love to know about him, the fear he must feel at times and the fact that I will die one day and he will never understand why I left him alone - that can make me quite unbearably sad.

I have come to terms with the knowledge that there are things I cannot let myself think about

Time... a cliche I know but it does help, disability becomes the new norm & you start to see less of the disability & more of the child.
On ds2's birthday i tend to think of what we did last birthday or how much he has changed over the last 12 months & not so much about his birth. The first few birthdays were rough though.

I've had counselling along the way (although about 4 yrs later than i needed it) & AD's bust mostly now i feel like my old self.

The future is a worry, but I worry for ds1 too (the nt1)

I also hAve a very large wine rack & HUGE bottle of GIN!!

My dd is 2.7 and also had oxygen deprivation at birth and had to be reanimated. I am a happy and positive persone but thinking too much about my dd can find me crying in a heartbeat. Next week I will find out the result of the IQ test conducted by the psy and maybe I will find closure after I get the results. Or maybe I will go into a depression...
I agree that the waiting is the worst. Hope you and your dd are doing well.

ds was born very prematurely at 26 weeks, before he was even out they told us he would most likely have cerebral palsy (if he lived) so i suppose i came to terms with it pretty quickly, i suppose it gave me something to focus on really.
i have friends who had a trouble free pregnancy and then there was an incident at the birth and they are still trying to come to terms with it many years later

like glittery, I suppose we always new that ds2 would have some degree of disability (born at 28wks) I think it defiantely makes things easier to accept.