the extra strain of having a child with special needs on a relationship

[lourobert]

Ive also posted of the relationhsip board as I know that relationhsips can strain when you have a child but then it occured to me I wonder if there has been any additional strain due to our ds having additional needs or would our relatinship still be like this if things were different...iyswim??!

Obviously weve both been through the whole grieving rocess together and I feel that we lost of the sense of us a while ago as all our focus was on ds...I fear its too far goen to be able to get back.

Just wondered what peoples thoughts were?

[anniebear]

defo an extra strain, a huge one
The only reason I think dh and me are still together is that we had a very strong relationship in the first place


Most couples have a baby and their relationship is strained because of tiredness, extra stress etc

But at some point baby sleeps through

For many people with a chld with SN the child doesnt sleep through, so the tiredness and stress continues

extra stress as you may be grieving, you have appointments

and this doesnt always stop

Sorry, not very positive am I?!!!

I was convinced for a while that I didnt even love DH, but things have got better recently and I know my feelings were alwyas there, they had just been sat on an squashed deep down by Ellie!!!!! lol

sorry .... no helpful advice!

[anniebear]

dont forget lourobert, your DS is only little, you have maybe not grieved fully yet

It defo takes time, Ellie is 6 in August and was ill when she was 8 months old. I can say about the last 12 months or so we have started to get our relationship back

I wasn't unhappy all that time, but we had lots of niggles, lots of strain, constantly shattere wihich is the biggest thing! then as thing started to get back Ellie was taken ill again etc

for us and I can only speak for us, things with Ellie have got a bit easier, maybe I am accepting things a little more and this has helped our relationship lots

[anniebear]

sorry, bit waffly today!!!

[ShinyHappyPeopleHoldingHands]

Lots of extra strain and it's prettymuch relentless. So much extra effort required to keep a relationship a good and worthwhile one and many couples don't make it.

Conselling helps and best sought before you get to "dire end of marriage" crisis stage IMO.

Also important to find opportunities to have a laugh both together and with other friend, and BE people other than "x's" mum or dad.

[mymatemax]

I think it can put a strain, I think when you have a child your relationship naturally changes a little, when you have a child with sn the changes can be much greater.
I know dh & I dealt with ds2's birth, health & subsequent disabilities very differently.. I want to know everything he sticks his head in the sand.
Its also much harder to have any spare time to spend together, ds2 is nearly 5 & it still very rare they we are able to go out together as a couple, only my mum babysits for him & it takes planning!
We are both much more excepting now & we do enjoy each others company again.

[Leilel]

LOL, what relationship. I prioritise my sons, my (NOT darling) idiot 'partner' prioritises himself. He cant cope with them. He doesnt like them. He wont help out with them.

[r3dh3d]

It's a huge strain.

We found all the "normal" stuff that you have to talk about in order to keep a marriage together became undiscussable because of DD1. So (for instance) we couldn't talk about money because it meant talking about plans for the future and where we would live and whether we had to adapt the house and whether DD1 would ever be bright enough to understand how to get down the stairs. Which was just waaaay too painful for DH to discuss so we avoided the subject. So we never talked about money and he bought a flash car (thinking we had plenty of money) while I was skimping and saving every penny for the future. Every time I look at that damn car it puts a strain on our relationship!

Daft example, but so many things are like that, all normal relationship discussions involve talking about DD1 in the end and so we stopped communicating which was really bad news and it all started falling apart. We had to go to Relate to sort it out.

There's also a whole bunch of issues around caring for her - she's fairly hard work and so though we love her we both see it as a bit of a "chore". She's 1:1 so one of us looks after her and one of us looks after DD2 at weekends: you end up in the horrible position of arguing about who gets "stuck" looking after DD1 which is horrible and just makes you feel more guilty and you start sniping at each other defensively.

Plus not being able to get a babysitter - I think the only thing that has held us together is having a live-in carer means we have a babysitter twice a week and so can get out and be "us" again rather than "DD1's parents".

Er... sorry. Went on a bit. But I found that understanding the effect of this on our relationship has really helped us hold it together.

[lourobert]

Everyday seem slike a real chore at the moment....my ds is coming on leaps and bounds and im so proud of him but that doesnt wish me resenting the fact that he still cant walk and then i make a silly comment and my dp takes offense.

Just wish this was someones elses battle sometimes.

[lourobert]

we parted for a short while a few weeks abck and i went out and ended up meeting someone that id first met a few years back. We hit off straight away, nothing at all happened although part of me wishes it did.... but then i thought even if i did want it to go somewhere no-one would be interested in a mother of a child with severe special needs....what an awful thought that was, it didnt make me resent my lovely lovely boy it was just the first time it struck me....!

That doesnt make sense does it? Just typing as im thikning

[jenk1]

yes it is very hard with 2 children with SN,s.
We go through weeks of not speaking to each other,shouting and being upset to being extremely close and getting on really well.

we have come close to splitting up a few times but we know we couldnt last without each other.

[ShinyHappyPeopleHoldingHands]

Oh God I relate to all of this sooo much. R3dh3d, that so struck a chord with me. Ds(2) is also a one-to-one job, in fact his respite carer describes him as 2 to one, and that's from a lady who is terrific with children with SN and it's her lifes work.. but she won't have DS unless her husband is available too.

We live for that respite (6 hours once a fornight and one overnighter every 6 weeks although is works out less than that since we got the overnighters granted). I feel guilty that we live for it.. but we do.

We love DS so much but he is such hard work. He has put such a "dent" (in a way) in the childhoods of DS1 and DD, there's no getting away from that although obviously they love him too and have learnt lots of positive stuff.

R3dh3d I'm glad you got your communication issues sorted at Relate (at least I hope you did), communication is sooo important. Lack of it can cause so many problems and to either or both partners creating some kind of escapism that divides you even more. DH and I have reached breaking point too and had to rely on counselling to sort us out; a tall order for the counsellor to be honest. We have one really redeeming feature in our marriage in that we love each other and want to be together but if we had known back then (when we met) what we know now, and what the future had in store for us, I doubt we'd have made the same decisions. It's just all so hard. The GP has recently put us both on antidepressants (not admitted that under this name before for some reason) and they are helping but that obviously don't take the stress away. And I never wanted to go down that route, I really didn't.

Holidays (when affordable) -and most of the time we have to rely on a charity to get one which makes me feel scummy - are potentially more stressful than staying at home. Which is such a shame because by God, families like ours (all of ours posting on this thread!) need a holiday so much. But DS sleeps even worse anywhere else and we have to think about him escaping from the bedroom, or the chalet etc. He has no restriant or sense of danger; no idea of what is appropriate. And there's no relaxation on holiday; none at all. Lay on a sun lounger by the pool? Ha! I haven't lay on a sun lounger since as long as I can remember!

We have some wonderful best friends (a couple) who can and do look after him sometimes and 2 weeks ago we went to a Mumsnetter's birthday party up North, so were away for one night. Days after we got back we found out that when they went to a play centre (with all our children, ours and theirs, so five children in total although our eldest is almost 15 so helps out), DS2 smeared poo everywhere and caused a HUGE issue in the play centre, lots of outraged and disgusted parents and shrieking children. BFs had to deal with that (he had never done it in public before' does it regularly at home - have constant huge supply of latex gloves and Shake n Vac but still think our home stinks). My friend won't go to that play centre again even though she used to take her youngest there weekly. I can't take the kids back there now obviously.. even though they were nice about it when I took in a gift to the staff to apologise.

And of course I can't imagine leaving DS with BFs again any time soon, if ever. It's just not on for them to have to deal with that is it?!

Sorry also for the mammoth post.

It's a wonder we (us couples) stay together at all isn't it? Although really, DH and I are in the position that we couldn't split up if we wanted too; this family needs both of us constantly; it would fall apart without both of us because it's all teamwork. That's the scary thing, because I know that that fact alone would not prevent us splitting up if it all got really bad. That's why we have to keep our relationship viable despite everything, not just for us but for the children.

And Lourobert, I completely identify with your remark.. I don't want to be with anyone but DH in a million years, but then it's just as well because nobody else would ever want me with my baggage. They would take one look at my "home situation" and run for the hills.. and rightly so!

[expatinscotland]

Well, I'm lucky in that my husband also has dyspraxia and some pretty significant learning disabilities.

So, for us, our relationship is still rock solid despite DD1's SN (dyspraxia, and she'll probably also have learning difficulties as well, although right now she is not school-age).

I agree with annie's post about an SN child who doesn't sleep, however. That would be VERY, VERY hard.

Best of luck to you, lou.

Just hope you realise you're not alone and this board is incredibly supportive and helpful for many of us SN parents.

[ShinyHappyPeopleHoldingHands]

Expat, bless you for seeing DH's difficulties as a bonus. Don't his problems make life harder for you though sometimes? You must be a very "glass half full" type of person..and good on you!

My DH is disabled (psoriatic arthritis) and can't work. He is in chronic/acute pain ALL of time time, which makes everything much harder, but to be honest I don't have a clue how we would cope if he COULD work. My life would be spent accomodating the needs of DS2 on my own and everything I do with/for the other two would go out the window. That's why is complete team work and any variation (like when DH is in too much pain to do anything) make it all go pear shaped. (Most of the time DH hides the pain he's in though.. he cooks us dinner while going off to throw up because of the pain he's in!)

Sorry. Am banging on again.

[mumblechum]

When our ds1 was with us, we seemed to go through long phases of 3 or 4 months when we could quite happily have killed each other.

We got no help at all from Social Services and the only thing that kept us going was my very supportive parents who enabled us to have several long weekends away each year, occasionally a week.

Ds1 didn't ever sleep through in his 7 year life and it was incredibly tough, holding down a responsible job and with a dh who worked away most of the week.

The most important thing you can do, imo is if you get the opportunity for some time as a couple, grab it!

And good luck to everyone going through this now.

[ShinyHappyPeopleHoldingHands]

Mumblechum Your post made me realise that however hard it is, I would rather cope with this forever than be without DS for second (in fact this was since he developed epilepsy in 2005 and had the most massive fit that made us think we were losing him, I worry about it a lot anyway). He is 7 too.

When/why did you lose your DS if you don't mine me asking? (Sorry if you do.. and feel free to ignore me.)

[mumblechum]

in January 2000, when he was 7 and a half. He had severe cerebral palsy caused by lack of oxygen at birth. Couldn't move his limbs, sit up, see or talk but could hear and loved music, recognised familiar voices and laughed A LOT. He was, weird as it may sound, the happiest person I ever knew when he wasn't ill.

He had a lot of chest infections, and the last one turned into pneumonia and he died within 24 hours of seeming ill.

[expatinscotland]

Yes, his difficulties have made life more of a challenge for me and for us as a family, mostly financially. But hey, swings and roundabouts!

He's healthy, DD1's healthy, so that's the greatest of blessings.

The man has the patience of Job, too. That's more than I can say for myself, although I like to think I am improving with age .

I cannot help thinking that he's one of the biggest strokes of luck I have EVER had in my life - right up there with my parents.

Because if he didn't have dyspraxia and so many learning difficulties, I wonder would he be the sort of man who could have coped with my severe PND, etc.?

And would he be the type of man who truly understood 'for better, for worse, for richer, for poorer . . . ' Because tbh, just from what I read on these boards, you gotta wonder about a lot of folk.

I think a lot of Western people nowadays don't have very realistic expectations of many things, and I'm glad for my experiences and DH because I didn't 'grieve' for 'the child that could have been' with DD1.

I saw no need to. She is who she is and I am damn lucky to have her, disabilities and all. My life was a total wreck before DH came into it and she did 13 months later and I was killing myself fast.

And I know what you mean about how, in a very different and unexpected way, his own difficulties make you a family unit.

I feel the same.

[expatinscotland]

Oh, mumble .

[onlyjoking9329]

it's amazing what you get used to thou, i thought everybodys life was like ours! then i saw the ski family advert
i don't think our life will ever be easy, but it's the only life we have.
i think our kids autism kinda glues us together. we do love each other very much but the autism does kinda take over.

[ShinyHappyPeopleHoldingHands]

He sounds like a very special guy Expat. Bet he thinks he's lucky to have you too.

[mumblechum]

I always think that when life throws shit at you, and evidently none of us are immune, it makes you a stronger person and hopefully also more sensitive to what others may be going through.

Your dh sounds lovely, expat!

[ShinyHappyPeopleHoldingHands]

Mumble, he sounds adorable. You can be sure he came into your life for that short time for a very important reason.

DS also loves music and is the most sociable child ever even though I have probably made him sound like a horror! He talks to everyone (in his limted/unclear) way and it breaks my heart when people ignore him.

The other week DH was pushing him in his wheelchair along an alley way behind a young bloke and DS was shouting "Hello!! Hello! I'm Alex!". The man looked once but didn't speak and didn't look again. (What would it cost people to smile and say hello?). But DS kept on, and eventually said (first time he's EVER said this sentence!) "HELLO!! I'm behind you!!!" I didn't even know he knew what "behind" meant! He is full of surprises!

Every day of full of these smiley little moments.

You must of lots of those to remember Mumble. I wish you had had more time.

[mumblechum]

How horrid of that person not to say hello! Maybe people feel embarrassed, but I make a point now of always smiling directly at children in wheelchairs and if appropriate, saying hello. People do just act as if they're invisible sometimes, even the G|P used to always talk above his head, never holding his hand, for example and saying hello to ds.

Your Alex sounds like a lovely little character!

[ShinyHappyPeopleHoldingHands]

Some people do seem to think they are immune though don't they?

When my friend told me of the other parents' reactions to DS's "behaviour" (with the poo) in the play centre, I said "My GOD! What is WRONG with them? What would it have cost for them to be sympathetic! ANY one of their children could have been disabled!"

I will admit that year ago I used to feel a little uncomfortable about disability, but I can put my hand on my heart and say that I NEVER ignored a disabled child who spoke to me and I honestly always used to look at the parents and think "there but for the grace of God...". DS1 has cystic fibrosis and when he was little I used to think myself lucky that he didn't have all the needs of the severely disabled children I would see out with their parents. (Ironic as it turned out..)