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Original poster

How much has having an SN child affected your marriage?

32 replies

Doigthebountyeater · 15/08/2010 11:42

Hi,
Just feeling sorry for myself today. Ds1 (4) was diagnosed with epilepsy in jan. In the great scheme of things, it is not too bad. It is nocturnal mainly but he had one full TC on Christmas Eve last year. Since then, we have tried epilim (too many nasty side effects) but did get him seizure free for 4 months which is excellent - now we are moving him onto keppra.

However, DH and I have not slept in the same bed since Jan due to the fact that we need to monitor DS on the medication to see if it is working. His seizures are too brief for an alarm to work and he has no other signs in the morning. Add into the mix that we have a baby who does not sleep and that I accidentally got pg and had an abortion solely because we really felt we could not cope with me being pg ( I am sick for 9 months every time and have spd).

We have always had a very good marriage. However this year has been exceptionally hard and has really taken its toll on our relationship. We bicker and fight a lot more and several times recently I have screamed at him that I hate him. I don't. I just hate the fact that we're exhausted, stressed and worried all the time about DS. We don't even know yet if the keppra will work, in which case we will have to slowly increase the epilim again and the slowly build up a third drug. We are doing the right thing by our son but it has definitely cost us a lot.

Anyone else feel the same?

OP posts:
sarah293 · 15/08/2010 11:46

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Original poster
Doigthebountyeater · 15/08/2010 11:49

You have it a lot harder than I do Riven. I think a lot of my problem is that I am a very anxious person so that I am still on high alert/feeling worried even when everything is actually fine. I am exhausting myself by always imagining the worst.

OP posts:
vjg13 · 15/08/2010 11:57

The statistics for marriage breakdown in families with a child with additional needs are grim and there is no doubt it can put your realtionship under a lot of strain. Sad

You have had a horrific year by the sound of it and are bound to be snappy/stressed/exhausted etc. Hopefuly things will improve for you all. You have had a lot to cope with in a short space of time so do try to be kind on yourselves.

IME it has affected our family in many ways both negative and positive.

StarlightMcKenzie · 15/08/2010 12:15

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SanctiMoanyArse · 15/08/2010 12:15

We ahve a good amrriage, secure and loving but the stress (rather than the SN itself- decent support could have solved it) has almost ended it a few times and certainly amde the road more choppy than it should have been.

We have ds4 in our bed at 2 as ds3 woudlnt realise if he was puting ds4 in danger as he slept, and ds1's meltdowns are a risk too. taht's ahrd going. And we never go out for an evening: we also initially bonded over a hobby that i've had to drop as ds3 can't do it any more and that is hard on us, and I know dh really resents it.

We also have horrid screaming rowws when tired though we both know why as we do it.

It's been a little better of late as Dh can now vary his hours (was made redundant and has set up alone, tough as we are now really short cash wise but has bonus side effects too) and when we can we make time for a coffee when boys at school (we use DLA in part to pay for a CM 6 hours a week for ds4 as he can access one and ds1 cannot- respite basically, usually for me to sleep / bath) but yes, we do think 'what if'.

roundthebend4 · 15/08/2010 12:17

Honestly it was a factor in our divoice not the one but defintley contributed .the tiredness the feeling I had to do all the caring hid unwillingness to try learn anything to help ds etc
xh now has very little to do with dc hid choice

vixen1 · 15/08/2010 14:02

We've been struggling recently too.

There are other marital issues other than our son's SN but it certainly magnifies everything.

Mostly it's the stress of having an almost constantly screaming or whining child (although he is lovely and affectionate too - I hate describing him negatively Sad ). We sometimes differ on how to deal with it, as all parents do and we also differ greatly on the amount of reading and research which has been done into his condition which causes arguments.

The general stress involved is just unrelenting. It's EVERY DAY and that's what gets to us... ho hum...

glittery · 15/08/2010 14:09

yeah i remember the paed telling me in the early days that something like over 50% of parents with a disabled child will seperate.

in our case xp flung us out when ds was 2, as he "couldnt cope"

ds was a ridiculously bad sleeper, he was great at first but by around 18 months old the dystonic spasms kicked in, 60+ a night and he would be up most of the night crying in pain, we ended up sleeping in seperate rooms so at least one of us could get a sleep.

XP felt he should be allowed to sleep all night as he was working (ran his own business and could if he wanted come home anytime/pop out for a few hours and leave employees doing the bulk of the work Hmm) whereas i struggled to cope with ds on my own all day if i had been up all night.

it was a no win situation, coupled with the fact xp could never deal with the fact ds was disabled, xp started going out with friends more "for a break" and inevitibly met someone else and decided the grass was greener!

thankfully ds sleeps a wee bit better now and i get one night a week off when my mum has him overnight, xp visits ds at my house usually twice a week for under an hour, his choice, never takes him out as he is embarassed by the wheelchair etc and says he would need to get ds adopted if anything ever happened to me...twunt! Angry

SanctiMoanyArse · 15/08/2010 14:19

Yes Vixen- and not just has been every day, but will be every day as well, I find.DS3's summer scheme is great but we've ahd to reject ds1's after a few incidents and that's one more avenue of help gone with nothing to fill the gap (the staff helped ds1 into a tree then let him fall but didn't tell us, then invited ds2 in for a day who told us what was going on- ds2 had a horrid bump on his head where he was in an accident but the staff weren't botherd and didn;t pass info on (goal post fell on his head); ds1 had given a child a balck eye but not fed back to us and far from the 1-1 ds3 was getting (we deliberately separated their playschemes) the kids were just being left to play ds1 on the sofa.

glittery sometimes I think the best thing any aprent of an SN child can get is a beleif in karma.

AvrilHeytch · 15/08/2010 14:26

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trace2 · 15/08/2010 14:47

oh lots we not slept in same bed for over 18months dd stops breathing and as some kind of nasty seizure which cause her to hurt her self:( plus ds as aspergers and wakes up all night to so dh sleeps with him now so he can sleep. dh is so depressed lost his job due to illness and time off, i just want some kind of normal life.

glittery · 15/08/2010 14:53

Sancti yes i do believe in Karma Grin

TheLifeOfRiley · 15/08/2010 15:00

glittery Shock What a ... .. no horrid word I can think of seems enough TBH Angry

I am no longer with DS's dad, we were never married but together for 9 yrs, conceived DS after 4 yrs together. I think DS's additional needs highlighted what a twunt ex was and sped up our split but think it would have been inevitable at some point anyway as he was emotionally abusive.

The disturbed sleep/never getting a full night is HARD. {goes round with empathy and cups chock full of caffeine.}

SanctiMoanyArse · 15/08/2010 15:05

Trace

We were there years ago too, but it did pass (with DH being ill and lsoing job I mean; thankfully no epilepsy though reuslts of EEG next month).

DH much happier now he's self employed / at Uni. Thank goodness, he was so very ill indeed.

glittery · 15/08/2010 15:29

Oooh thanks LifeOfRiley dont do coffee but i'll have a Red Bull if you're dishing out the caffeine! Smile

roundthebend4 · 15/08/2010 15:36

Me to I'm just waiting for it to come bite exh on the arsr hard

roundthebend4 · 15/08/2010 15:37

I'll have coffee please extra strong no milk or sugR

TheLifeOfRiley · 15/08/2010 21:18

caffeine product of your choice Grin I don't drink coffee but will happily make it, personally I enjoy gallons of tea (with biscuits, natch) or cola.

glittery · 15/08/2010 21:20

ooh i must admit i do like a jaffa cake! Grin

Lougle · 15/08/2010 21:22

Well, we are both exhausted. That doesn't help any relationship. By the time the girls are in bed we don't have any energy left to talk, or just be together.

Things are tough at the moment, realising that in lots of ways, DD3 (16 months) is more developed than DD1 (4.7). Not the stuff the reports would highlight, but the danger awareness, the ability to learn that 'Mummy always gets cross when I do x, so I shouldn't do it'. Flip me, DD3 will even go off to the naughty step if she's pinched or smacked her sisters. DD1 hasn't ever been able to comprehend that.

I digress.

roundthebend4 · 15/08/2010 21:53

i want acustard cream no I want 2 , well I would if i wasn`t spending so much time making sure i had not missed any spots when cleaned the toilet .Cheers kids when said share did not mean your germs

glittery · 15/08/2010 21:56

Grin having a nice night then?

roundthebend4 · 16/08/2010 07:12

I'm going back to bed second I dropped kids if at Sn playscheme mind got to get them there on the bus

discodad · 16/08/2010 22:43

Back up a bit to Starlight's first post - 80% figure would appear to be incorrect: here

siblingrivalry · 16/08/2010 23:01

I feel like we could add to the statistics at the moment Sad
I have had enough of not-so-'d'h leaving the whole lot to me. I deal with all of dd1's appointments,therapy,school crap etc while he sits back and watches me getting more and more stressed. Then he complains that I'm miserable!

Sorry to rant -had a rough day and didn't get dd1 to bed til half 10. H has been to watch the match at a mate's house than texted me to say he was driving another mate home (good 20 mins away) because he didn't think it fair to let him get a taxi Hmm
So I get the dds to bed and start on the bloody DLA form I'm in the middle of and he waltzes in without a care in the world Angry

It's hard going, no doubt about it.