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DD's autism destroying my couple - any tips?(23 Posts)
I rarely post anymore but been following this page for years. DD (6) has severe autism - it went from mild to severe in the past 6 months or so, she's also fully non verbal, and over the years it has had such a hit on our couple. For years we were super united, despite the lack of sleep and everything, but lately everything is just crumbling.
DH works full time and I stopped working 6 years ago, creating an initial imbalance between him being the hardworking breadwinner and me totally dependent on him and having to manage the reduced family budget.
DD's autism has been really tough - as I'm sure you all know - terrible sleep, impossible to go out do normal things like restaurants, movies etc. Lately she's been very unwell with lots and lots of screaming which totally drain me during the day. Over the years I've been trying my best to stay as patient and understanding with DD's meltdowns as I possibly could. Not always but mostly at least. Then typically DH comes home tired from work, and has zero patience for any screaming or meltdowns - starts shouting/swearing about "him having no life" and that I'm "not strict enough with her", and that I'm "neglecting him".
Which makes me so mad. Is that a typical SN dad thing to say??
Been feeling lately that I'm managing his mood swings/bad temper just as often as DD's mood swings and meltdowns and that's just wrong. He doesn't have special needs or any sort of neurological disorder!
Anyway, I'm guessing we're a classic case. I find him quite neglecting as a father, always too tired to interact with her, he does love her more than anything, but his only interaction with her is just tickles and telling her off when she's too loud. He just doesn't try - DD knows this and only ever asks me for all the things she needs.
Not easy to implement PECS because of that!
I'm seriously losing my patience with him being so negligent as a father, and I think since DD's dx my patience was the only thing keeping us together - as well as the financial aspect obviously. I want us to stay together more than anything but we're both becoming so impatient with each other and so worried for DD who just does not progress at all, despite everything we've done/tried.
I must also say we've just bought a house so the finances are even more stretched.
I would be really grateful for tips on how to save our couples - any ideas...
Well I don't think his behaviour is typical for a dad to be honest. I don't think the fact a child has special needs should be an excuse for a dad to be useless or any less of a good dad. He doesn't sound very supportive at all. My son is 4 with severe special needs and dh and I are very much active and equal parents with both taking time to do things with ds and understand his issues.
I would say the lack of support from your dh is your main issue and is causing resentment (understandably)! Does he spend any time alone with your dd looking after her at weekends etc?
I don't think it's your daughter's autism destroying your life, it's your arse of a husband. Sorry, but it sounds like he's winding her up and letting you deal with the fallout. That's bullying.
It is often hard when one parent does most of the parenting and becomes the expert in their child, but if that's how the roles are split the other parent needs to respect that expert role and not ride roughshod. If he thinks he knows better then he needs to put his money where his mouth is, so to speak.
Sorry you're going through it and having a tough time. Do you know why her behaviour has deteriorated? Has anything changed?
When you say everything you have done/tried what have you tried and do you know why she has deteriorated in her coping lately?
I agree, your DH's behaviour is awful. saying that, I know a lot of families with children with SN where the situation is similar.
do you have any idea what may have caused her recent regression?
eskimo I completely understand where you are at. My dh and work situation is very similar to yours.
My dh says he feels like all the pressure to work is on him, and I know he'd like me to work at least pt, but he also knows that at the moment that is impossible with dcs needs.
He has also said that it feels like he is a spare part when he comes home, I manage dd, and when he's at home he wants to help, but doesn't know how, so feels useless and that annoys him, he knows it's him creating these thoughts, but doesn't know how to change it.
Relationship wise, we are working on talking, and trying to find babysitter/family who can watch dcs maybe once a month so we can go out and do something together.
It's slow progress.
Yes, it all sounds familiar!
DH used to moan about how all the pressure was on him, because he was the sole wage earner; that if I told DD off for knocking drinks over at the table, she wouldn't do it; all these professionals like speech therapists, educational psychologists talk nonsense - she would get by in mainstream with her native intelligence, etc, etc....
Best thing that happened was that she was assessed by several residential specialist schools for secondary. Their teams of staff sat down with us and talked at length about how she was falling off the planet in every department. He was in tears...because he respected the professionals there and it really woke him up to reality.
DH was insistent that one day I would admit that going to work was more difficult that staying at home, looking after the children - there is only one way to deal with that! Let them spend best part of a day, looking after the children - and point out that all they have done is look after the children; they have not cleaned the kitchen, bathroom, done the washing, etc!
I used to go out on a Saturday, and leave him with the children, while I was shopping all afternoon - and after several attempts, instructions that he was to get the children's dinner too, as I did not want to find them eating out of the fridge, cos they were so hungry at 6.30 pm!
Thank you all. I know nobody's perfect and I could certainly be a better wife, but I don't think it's fair at all that I should be a perfect SN mom and a perfect wife.
fairylea he rarely spends time alone with her at the weekend, apart from the odd times I go to the supermarket on my own, or the extremely rare weekend away (once a year or so). He keeps saying I should go away more, but more often than not when I come back there's been some drama (that I have to sort out) with DD crying. He shouts easily (his mom is the same and he's aware of that pattern repeating) and DD resents shouting. I think he wants to behave like a normal dad and thinks she needs telling off just like any regular kid does at times, but when she's hypersensitive he doesn't see the sensory issues, he sees bad behaviour. And thinks shouting will solve it - as if!!
Also being the budget manager I'm reluctant to spend money on weekends away, I'd rather save for DD's therapies. I actually don't need to go away really, I do enjoy DD's company, but only if we have a peaceful house.
poltergoose and dudesmummy and coffeemachine DD's behaviour has been challenging lately for many reasons. First she had a gut infection that kept coming back, then we moved, which she handled beautifully, but she's secured herself into safe habits in the new house, for instance she refuses to go in the garden. She spends loads of time on the iPad. Then at the same time, she had a new aide at school who isn't as great as the previous one. I think she is under-stimulated at school, and at home as I can't look after her as much as I should with all the housework/renovation I must organise. This makes her stimming and noise sensitivity much worse.
Also she's VERY reluctant to try new things, to sit down to do exercises at home, which doesn't help. She freaks out when I offer a new game or ask her to go in the (beautiful) garden.
Our speech therapist says I should force her to sit down and work, that overtime it will reduce the meltdowns... but I think it will just create meltdowns after meltdowns and she won't learn anything at all. She might even be put off activities she used to like like letters and puzzles.
frusso thank you so much - it really helps to see perspectives. I do believe each parent should make efforts to behave like a grown up about their own feelings - the situation is hard enough like this, without having to deal with childish attitudes like "I feel useless" or "I feel neglected"...
He's being completely unfair and unhelpful.
The things he has said to you are awful. What do you think has changed - I notice you said you used to be united and pull together. His behaviour now just makes him appear like he's selfish and only cares about himself.
If you can I would try to gain some financial independence and return to work. Would a part time job in school hours be a possibility? It doesn't sound like you can really rely on this man.
what kind of help/therapy are you getting? your Salt sounds awful. you certainly cannot force a 6 year old with severe ASD to sit down and do work
Being a few years ahead of you I strongly believe that not forcing her to do things is better. When all around her is change and chaos and sensory overload, she needs as easy a life as possible. Not forever, but for a bit, it's surprising the leaps our children can make when we back off.
thank you again all.
mrsbobdylan he was a great dad when DD was a baby. Then he just couldn't handle the lack of sleep - always been ultra sensitive with sleep anyway - and I think our issues originated right there. When DD was a newborn we decided I would take nights because I was breastfeeding and not working but as DD's sleep issues became worse and worse when autism started, it backfired as "my fault if she still isn't sleeping". We read books after books about ASD where it's written ASD kids are bad sleepers, but still I shouldn't have listened to his advice and she'd be sleeping.... so very irritating to hear, especially when you're badly sleep deprived.
Gradually as he works long hours I was pretty much the only parent dealing with everything from food to school to potty training, and therefore if these things went wrong (as they always do with ASD?!!) it was my fault.
And he's really thinking he works harder than me. He has a tendency to scapegoat easily - just like his mom - it's so much easier to blame someone than work out issues. He never, ever blamed me for DD's autism at least.
coffemachine When DD was 1, before autism, we left the UK to relocate to my country (Switzerland/France). That meant more isolation for him, which I fully understand, but not everything French has to be my fault!
I keep saying that autism is VERY isolating but he still thinks we are tackling the situation all wrong.
The thing is I DO understand his work is stressful and difficult and that he comes back knackered - but why doesn't he see that my "work" is mentally+ physically exhausting too, I'm dealing with autism 24/7. It's not a battle of who's having it harder, it's about being a team, a family. Making things easier for each other. Blaming and shouting just make things more difficult than they already are.
coffeemachine and poltergoose Thank you for supporting my thoughts! Our speech therapist is very good and well trained but sometimes she says things like that as if it was a matter of laziness from DD or myself... making me feel more guilty that I'm not doing enough. I def think I could be doing more but I need a hell of a lot more energy.
Its difficult to summarise but we got DD diagnosed when she was 2. From then weekly speech and occupational therapy sessions (mostly TEACCH which works well with DD). We couldn't find any ABA near us for the first few years, then decided not to start ABA when we were offered a space when DD turned 6. France isn't good for autism in general but we had great therapists and a great school aide for 2 years. DD had a lot of digestive problems and severe food allergies, as well as headaches, so we did a lot of biomedical testing and supplements like probiotics and omega 3 and diet intervention which help a lot for a while but haven't seemed to help lately. She keeps getting a bacterial gut infection (clostridia) that causes hysterical screaming and very easy sensory overload.
If she was progressing, I'm sure it would make things easier between DH and I, but this lack of progress, especially language is just so worrying and draining.
DD has severe ASD as well (but only limited speech/language). For us ABA worked better than anything else. We only ever did it as a self funded home Programme but it was still worth it. Is this something you could look at again as you say your DD is not making a lot of progress with the other input? sounds as if it would be available to you?
I don't know coffeemachine, DD was never into reinforcers, she loves encouragements and individualisation - that's why TEACCH worked so well. We were advised (in the UK and Ireland by psychologists and other families) that ABA doesn't work well with all children and that there's lots of "bad ABA" that does more harm than good (ie too rigid and not enough cooperation with school).
I wasn't against it in any way but because we didn't have any space we did other things. Then at the age of 6 we were told that she might be "too old" to start ABA and that it might be in contradiction with everything else that she was used to...
First she had a gut infection that kept coming back, then we moved, which she handled beautifully
I think the stimming, activity restriction and sensitivity are signs that she has NOT handled the move and is in fact extremely stressed. What you are actually expressing is that her self limiting inwardly managing coping mechanisms have made the move easier for you.
Your Dh is being an arse, but we all are sometimes. Perhaps what you need is not to invest in weekends away and "breaks" but more to invest in making day to day life easier for you? It sounds like you are running round organising and settling into the new house and Dd is getting less as a result. Off load the easy things. Save your energy not just for Dd but to help your Dh be a better Dad.
The biggest and most valuable thing you can ever give not just your Dd with SN but any child is a good relationship with their parents. It sounds like your Dh didn't have great role models and is struggling to adjust his parenting to your child. Help him. You by now will be managing most of her behaviours without thinking. He's less than part time. Stop criticising and use your skills to help him get as good as you are and you will ALL be happier and life will start being easier.
Your SALT sounds limited. Don't force her into working, it sounds totally short sighted.
thanks zzz lots of food for thought there.
You must be right about DD not handling the move as well as we thought. She was really happy about having more space and slept well in the house though. It's afterwards that all "her self limiting inwardly managing coping mechanisms" as you say appeared.
About DH - I know you are right and I want to save my couple. However, what you're advising is pretty much what I've been doing for the past 4 years, I've been feeling selfless for quite a while, always knew deep inside it was worth it. But his complete lack of efforts to be a better dad, to try harder to play with her and unload all his frustration on me make me feel it's a one way street and can only lead to piling up rubbish and eventually to a clash. That's why I'm posting here.
He hates being told what to do too, and yes his parents were less than good role models. His mom is a narcissist and he hasn't talked to her in months, and his dad, while being super friendly and funny, is never involved. DH is fully aware of that as an impact on his life and personality, but doesn't see he's repeating the same pattern.
I do understand parents as individuals react differently to SN but it doesn't mean I must cope with his short temper and easy shouting for the rest of my life. I have too much ego for that .
Fully, wholeheartedly agree that the best gift to any child is a good relationship with his/her parents.
We still have great moments every now and then but overall it's deteriorating, mostly because my patience for him is running out...
Sorry if I'm not helping here, but being a good Dad when your DD was a baby is 5 years ago now. That's 5 years of not being a good Dad and not a very good dh either.
I agree you shouldn't have to put up with it.
On a separate note, have you tried melatonin for dd's sleep?
We still have great moments every now and then but overall it's deteriorating, mostly because my patience for him is running out...
So was he a good Dad or were you just more patient about him being not so great?
If he was good with more support do you want to find a way of doing that or are you now expecting him to manage without?
Nb I am seriously not the selfless type
I second the melatonin question.
Yes melatonin was a huge help - not the only thing - to improve the bad sleep.
zzz When she was a baby I didn't have to ask him to interact with her, it came just naturally.
He was a great dad when she was a baby because he was interacting lots with her, just always nice and funny. She adored him too. After ASD started, he found it harder and harder to interact, to the point of not even trying. Typically when she was 2-4 and was barely interacting with anyone apart from me, if he was back from work not too late, she would immediately ask him for her favourite chasing game with him, but he would say no as he was too tired. 5 years of being too tired is a long time. During many months she was also mad at him for being late from work and would not even look at him, and he would take this personally...
What I'm mad at him for is that DD was so attached to me for every thing she needed, and I needed him to be more proactive to help her communicate with others , but he would barely try. This is not something that I could change on my own, apart from leaving them together which isn't always possible. He will rarely take her to the park or playground because he finds that boring, as she doesn't talk and might look at leaves or stones for ages. That kind of stuff.
I take your point about working on how to support him being a better dad though.
Seconding the wise advice of others here.
Hellish sensory stuff in garden of some kind. (That's my guess. I often can't access ours. Go out there, close your eyes and really listen. What can you hear? Anything you can smell?)
New support person at school.
Renovation. Noise, paint fumes, change, chaos.
Other parent who is not being consistent and useful.
Frankly, almost any child would be having a tough time of it.
As an autistic adult, I'd be hiding behind a curtain and refusing to come out. Even with the coping skills I have at this age.
Thank you amberlight!
With the garden I would guess it is because it is too "open". the garden itself is fenced and closed. We even bought a trampoline and there's an old swing which she usually loves, but you can see neighbours houses on 2 sides. I'm guessing she doesn't like that because there's too much going on.
However every spring she has issues going back in gardens after the winter months. When we visited this house in september she went straight to the garden and loved it. We moved in in January, and I think she hasn't understood the "borders" or structure of it yet. Guess we need to work on proper fences to make it look secure and "framed".
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