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Original poster

Dx impact on parents relationship

59 replies

MangoMonster · 09/10/2011 10:55

It's starting to become apparent that myself and dp have different approaches towards the dx and ways in which we can help DS.

I've heard it's quite common for one parent to get quite consumed, making the other feel excluded, which comes across as not as concerned...

Just wondered what experiences others have had and where the middle ground is.

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ArthurPewty · 09/10/2011 11:40

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Original poster

MangoMonster · 09/10/2011 11:54

Sad to hear that leonie. Such a sacrifice for you both, but I agree kids must come first if that what works for them. :(

I can already see how it's taken over our converstions and thoughts, well mine mainly.

I have no energy for anything else at the moment, however it seems DP has no energy to put towards it. A gap is emerging and not sure what to do about it.

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Toughasoldboots · 09/10/2011 12:10

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sickofsocalledexperts · 09/10/2011 12:14

I want to just say that it doesn't always have to ruin your relationship. DH and I are still (touch wood ) pretty strong, 5 years on from the autism diagnosis. For us, it worked mainly because he lets me take the lead on the kids and the autism (while he works to get the money to pay for house, food, ABA etc). He sometimes sticks his beak in, but realises he knows less than me and trusts me - I think - to do what's best for DS.

Original poster

MangoMonster · 09/10/2011 12:22

sickofsocalled, it's encouraging to hear that you have found a dynamic that works. We are going down a similar route but I feel he resents me making decisions about ABA etc, but he won't do the research to be able to discuss it properly and if the decision has to be made, I make it.

This also leaves me feeling like I'm the only responsible adult, which makes me resentful. His life isn't too different to before we had DS, mine is on another planet to the one I had before DS. Just not sure we are as compatible as we thought.

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Toughasoldboots · 09/10/2011 12:23

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Original poster

MangoMonster · 09/10/2011 12:27

Toughas, why do you think he finds it easier not to be involved? Get that impression about DP. Do you think they just don't have the spare capacity due to work etc.

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sickofsocalledexperts · 09/10/2011 12:29

The early days are hardest, but you can get through. I can remember feeling pissed off if DH didn't want to discuss autism endlessly, and accusing him of not caring, whereas actually he had been all day at work fighting his own battles, and just wanted a few minutes free of stress. If your DH resents you making the decisions but won't do the work, he is just being a baby and perhaps using dissent with you as a displacement activity (ie if he focuses on you/him/disagreements, he doesn't have to look the autism squarely in the eye). There is lots of cowardly behaviour around in the early days - my fave was people (family) who would spend hours "making sure my DD isn't getting left out with all this autism malarkey". Lovely! Gave me another thing to be guilty about without in any way helping me with the thunderbolt of autism! Just keep on doing what you are doing, you are going to need to be strong for everyone, but then isn't that what women do a lot of the time anyway?

StarlightMcKenzie · 09/10/2011 13:13

It makes me feel like a silly child sometimes but I get Dh to 'proof read' all my autism related communications to check for grammar.

I then know he has a vague understanding of what is going on. I also ask him what aspects of ds's behaviour or learning is most driving him mad so that I can include it in the ABA targets.

Original poster

MangoMonster · 09/10/2011 13:21

Thanks starlight, I'm trying something similar with regards to proof reading, but he's just playing the game, his heart isn't in it.

Had a discussion last night about the dissent thing, it's like he's focusing on anything but DS right now. He doesn't see him during the week due to work commitments and at weekends he's either tired, has work to catch up on or is indulging in his own hobbies...He's always been like this but more so right now.

He's not really talking to me today, I personally think he's acting like a child, but have no idea how to move it all forward. Losing the will...

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Becaroooo · 09/10/2011 15:00

I am getting very resentful of dh and thats not good. Its also pretty bloody childish, but its how I feel.

He gets time off. He goes and meets friends. He goes on breaks abroad with them. (he has just spent £500 on a trip to China next year with his best friend and yet makes me feel bad for spending money on workbooks to help ds1. Is also not happy about paying for specialist tuition which means its up to me to do 1-1 wtth ds1)

He gets to go to work, meet other people, have toilet breaks and food breaks and generally live his life whereas EVERYTHING I do is determined by the dc (not just ds1 either)....how they are that day, appts to go to, therapies to do etc etc

I am very, very tired.

I am tired of being the only one who does any research to help ds1. I am tired of being the only one who does his exercises, his 1-1 and his homework with him. I am tired of telling him everything 3 times and it still not getting done. I feel like I have 3 dc

Original poster

MangoMonster · 09/10/2011 15:41

Becaroooo, it's must be very tiring for you. I wish I knew what the answer was. What happens when you bring it up with him?

I've only just started all this and only have DS but I'm already exhausted some days. Know what you mean about it's like having another child and you're the one responsible for your child's day everyday. Plus the telling him 3 times.

I do wonder what is reasonable to expect from him, everyone has different capabilities, perceptions and feelings. I don't want to feel resentful either, it's not helpful is it. I'm just not sure I can respect someone who can't face up to his responsibilities. It's still early days for us... Need to give us some time to work it out.

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Becaroooo · 09/10/2011 17:31

My ds1 is 8 and my ds2 has just turned 3 so that means all the difficulties of a very stroppy delightful toddler and ds1's issues too.

Dh just doesnt seem to understand. He was in denial for a long time that ds1 had any problems - a long time. Not helped by my MIL saying "he is just like dh when he was that age!" at every opportunity. Erm.....no he isnt.

I hate feeling as resentful as I do...as you say, its not helpful and it means I am cross/upset a lot of the time

Dont know what the answer is either.

Toughasoldboots · 09/10/2011 19:34

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Original poster

MangoMonster · 09/10/2011 19:38

I feel detached from him this evening for the first time ever...not good.

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coff33pot · 09/10/2011 19:50

Going through the same thing with dh at the moment. He is lovely, great, caring but just frankly doesnt get it. He knows DS is struggling and he knows and agrees there are issues but still steps back in time with the "he is just being down right naughty" and I think its the authority challenging problem that causes it. He does go to all meetings and is verbally supportive there so I am glad of that.

Doesnt help when the psych meeting went to pot this week and he was classed as complex and basically ran through all the things I already do. No dx just insults in parenting to be honest. I have taken that badly on my shoulders but dh is going with the flow but I can see the doubt and uncertainty in his face now as if I am barking up the wrong tree and DS is just being a preverbial pain :( So I am starting again on that score or at least thats how I feel.

I think its just a case of men seem to shut down and cancel things out till they happen. He is carrying on as normal working, painting house etc and joking around when I am still sat at that meeting mulling it over and over in my head and watching and analysing ds because one of us has to keep battling to get answers.

Original poster

MangoMonster · 09/10/2011 19:57

coff, thats exactly it... Carrying on as normal, like he hasn't got a care in the world.

This evening he kept mentioning that DS is stunning a lot more than usual, which is something he's never mentioned before (the stimming). May be it's just sinking in or may be he thinks it's the ABA causing DS stress...that will probably be the next helpful comment he makes.

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Original poster

MangoMonster · 09/10/2011 19:57

Stimming not stunning...

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Original poster

MangoMonster · 09/10/2011 20:01

I think some people, especially men do just shut down, whereas I break down! He's desperate to get away from me today, made loads of excuses to get out the house, which of course means DS has missed out on more precious time with him. Doesn't he realise that I would love to do that sometimes but can't just up and leave.

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coff33pot · 09/10/2011 20:13

I am sure he is stunning while he is stimming DS can roll his eyes into his head, turn in circles with arms flapping and still manage not to break his neck on his sisters skateboard in the house today!

I try to look at it that if we BOTH break then the world will stand still, it would probably impact on my DD and that would be the last thing I would want. But also at the same time I wouldnt half be nice to have a hug and a heart to heart on feelings. Then there seems to be no TIME.

Original poster

MangoMonster · 09/10/2011 20:18

He is, bless him! Very co-ordinated, can pace backwards and forwards, clapping, growling, teeth grinding and grinning at the same time! Especially love his moonwalk impression!

Time, that is definitely something there isn't enough of :)

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Princessescanclimbtreestoo · 09/10/2011 20:25

Have you tried telling him explicitly what you want him to do?

it can be easy to get stuck in the trap of assuming the other person knows what we want them to do, and then getting very resentful when it is not done (or not done to exact specifications or is that just me)

we struggled each time a child was dx'd. it does knock you for six, and you do need time to absorb it all.

before this, how did you both deal with big emotional issues? is he doing the same now, or is he behaving in a way you would not have predicted?

Agnesdipesto · 09/10/2011 20:48

DH and I are both totally consumed by it. Am not sure that is any more healthy tbh.
Us carers just don't get to have enough breaks to keep relationships on track, any or us. I think the main thing is to try not to blame each other for a situation which is not anyone's fault and hope its a tunnel where we eventually come out of the other end with something other than our children in common.

Original poster

MangoMonster · 09/10/2011 20:49

princess I have told him explicitly and he does make an effort the next day, but then back to same old. We have never had anything like this happen (visual issues were more cut and dried).

I know he tends to shut off from problems in his family too. He's a great guy but he has never wanted to grow up, however I thought this might be different, but instead he seems to be hiding in his immaturity, focusing more on what car to get next, even though he has 2 already and we need money for ABA and he's only just finished paying debt off.

He works damn hard but seems intent on squandering it to make himself feel better about everything. He could take a less demanding job to allow him to see DS during the week and we'd be ok but he's not willing to. I think he likes the escapism. He just seems to be acting more and more like a child (35 by the way) which means I'm acting more and more like his mother or grand mother has he told me yesterday! Big gap forming.

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Original poster

MangoMonster · 09/10/2011 21:12

In fact, it's doubtful he will change overnight. I'm going to do what everyone else is doing and suck it up, get on with it and hope we come through it. I can't force anything and we just don't have the time or energy right now to concentrate on us.

Thanks for the advice everyone and for listening. Hope we all find something that works for us

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