AIBU to find marriage hard with two autistic children?

[Mumbythesea1]

Does anyone else find keeping your marriage good when you have children with SEND really hard work?
our time is spent with our children who are both autistic. Getting them to bed for example can take hours. They cannot cope with anyone looking after them so DH and I literally don’t get any time together.
how do you cope with this? Any tips?

Sorry no tips, I have 3 with disabilities!

I haven’t found the marriage hard, no, but what do you actually mean by ‘keeping your marriage good’? You mention not having any time together, but that isn’t an indicator of a bad marriage, so there must be more to it?

DH and I never had alone time, we never had days off or annual leave together as everything had to be split to ensure someone was available for the DC. Out marriage never suffered because of it though, we adjusted and adapted to our circumstances.

I have two ND children and an ND husband. I just adjust my expectations and TELL him straight why I’m asking for something. Seems to work. He’s still the most incredible man I’ve ever seen in my life and he seems to find me the most amazing woman ever.

I feel like DH and I have grown apart as we never spend time together. I think with the needs of our children, our relationship is quite far down priorities

Anyone else get like this? How do we get past this?

Expectations and planning.

You still haven’t really said much about the problem? Growing apart could mean a multitude of things. Are you plodding along or are you arguing all the time? Is he doing his share or are you being left to it all? Do you just want some time alone with him or are you both terribly unhappy? It’s hard to advise without any detail if the actual issues.

How old are the kids and what is their level of need?

TBH, if you have two ND children it’s likely you and / or your husband are also ND. For us accepting that (even without seeking diagnosis) has allowed us to talk about our own struggles and needs. Helped us to divide and conquer based on our own abilities.

We also do lots of lunch dates when the kids are at school.

Anticipate it, plan it in.
For example; my 8 year old does theatre club Saturday mornings for 3 hours. My 12 year old doesn’t get up till 11 on weekends.
We plan a bit of “us” time between dropping off our little one and big one waking up. So we cuddle on the sofa, make messy sausage sandwiches and eat them together. Sometimes we will order from the cafe and have breakfast “in bed”. (Always order something for the biggest and keep it warm!) or I do colouring and he plays his computer games.
Thursday evenings are manic in our house, so we try to have sacred times on Saturday mornings.

We are 16 years into this. To be honest your relationship just changes, it does become centralised around the dc but you just have to go with it. As they become older, depending on their needs obviously, sometimes you find you can reconnect - even if it’s just when they spend half the day in bed sleeping later as teens. You just have to keep muddling through.

I think that's probably unavoidable but the important bit is do you both accept why this is and are you both putting the same into your kids, or is one lazy and one resentful?
if one is not sitting down until 11 pm then falling asleep on the sofa, but the other has their feet up since 8,l every night, it's much harder to make it work because it isn't about the kids.

if you're both looking out for each other, taking a kid each, alternating bedtimes, one of you doing X whilst one of you do Y, you're more in it together and fighting the same battle.
so that would be my first tip, make sure you're working as a team

We have two ND DC and struggle to the point of thinking about splitting up but not because we don't get on, only because the DCs were doing better in ones than both together and it was easier bizarrely to have one parent with both DCs than both.
We do have a babysitter who is a long standing arrangement (at least 8 years, older DC is 14) and it's only now that the babysitter finds them easier - things were ok with the younger one was preschool, then got really hard, then the older one became much less anxious and acting up but the younger one started messing about.
So it's taken years but it's been worth persisting.

We also try to have some time together after they go to bed (yes we watch TV but it's also when we bring up things we think of that need discussing).
(Our DC are adopted and AFAIK we are both NT - life is chaotic because of the DC not because of either of us!)

This is lovely advice but the idea of getting an ND child into a 3 hour class on Saturday mornings is something the OP can probably only dream of! Same for lie ins - the likelihood is that the OP is dealing with late nights, broken sleep and early starts.

Parenting ND kids is a different beast and managing your own mental health when you are sleep deprived and have problems coming at you daily is hard enough, without having to worry about putting time and energy into worrying about another adult. I saw an article the other day which said stress levels in parents of ND kids was comparable to PTSD and it doesn't surprise me.

What I would say, having been through some very dark times in my marriage is that communication is very hard but very important. Not just about the day to day but about what each of you needs and wants from each other. It's so easy to kind of retreat into a mental fortress and just survive, but it's very hard on a marriage and means you aren't able to help each other when you need it. How you get there without hitting rock bottom first I can't help you with! Can you carve out a little bit of time in the week to just talk and be together?

I’ve already said I have two ND children.
My youngest has ADHD and the theatre class is a special one for ND children/their siblings.
My oldest is autistic - which is why he sleeps so much during the daytime - he’s wired differently.
My husband is autistic. I live in an ND household. That’s why Saturday mornings are so sacred. Seriously, RTT

A couple of years ago I could have written this.

How old are the children OP? We've found that as DC get older things have naturally improved a bit - bedtime doesn't take hours anymore and that's made a huge difference (they still don't go to sleep any earlier but we largely just just leave them to it tbh).

It can help to be more flexible/creative about what constitutes 'time together'. If long evenings together and 'nights away' just aren't happening, try something else.
A few times a week DH and I eat together but separately from the kids and actually try and talk/listen. We also let them have a longer-than-usual chunk of TV on a Saturday morning so we can have a lie in. It's hard for us to go out for dinner so on my birthday we both took a day of leave and went for a lovely lunch while DC were at school. It all helps.

We have 2 autistic DC, and yes, it’s hard. How old are yours OP? I used to hate bedtimes so much, but now they are teens we just leave them to it largely. They started sleeping late eventually, so now we can have time together with our tea/coffee on weekend mornings and chat and connect. Weather permitting we sometimes do that in the garden which feels nice.

We have sometimes done lunchtime dates.

I think my advice would be to treat investing in your relationship as a top priority, as much as spending money on therapy for DC for example. Maybe strategise on how you could work towards building a relationship with a babysitter, or getting them both into a Saturday morning club.

DH and I have definitely grown apart, but we’re both committed to working on things, and it’s getting easier to do so as the kids get older

No tips OP - but much solidarity. If we want any child free time it has to be separate, as our son is non verbal & severely autistic & we have yet to find a babysitter who can meet his needs. He doesn't sleep until 10pm & at 8 years old still doesn't sleep through the night, so we don't even get evenings together.

All our annual leave is used to cover school holidays, as we only overlap 1 week a year.

My hope is that when our youngest starts childcare, we will do a lunch out once a week. And then work towards each working a 4 day week, so we have a day ring fenced for the 2 of us.

It's exceptionally hard though, we can't ever socialise together - so our friendship groups no longer co exist & resentment as to who gets time to themselves builds. Our son's disability effects every area of our lives.

Apologies, you're obviously doing it better than me! I'm still hanging outside 11th birthday parties in the car in case they are too overwhelming/dysregulating, wish I had a handle on things like you do!

Same here, and a toddler. It's hell

I’m not help either. Everything is a battle 😔

I never wanted anyone to be upset by this thread. Sorry if this is the case.

We are working as a team and do try and take leave together for our birthdays so we have time during the day.

Ours are 10 and 11. clubs are a no go for ours despite trying some. My youngest still doesn’t get to sleep on his own and so we take it in turns to get him to sleep which works well but every now and then we get a bad night (hence me posting this in an evening) and I wonder what happened to our closeness I suppose.

no one can look after DC as it dysregulated them too much as it deviates from our schedule.

I think we are going to need to be more creative to find some time together.

thank you for your lovely supportive comments x

This all rings true! We used to always take AL for a birthday lunch but now we can take the DCs to quiet restaurants with slightly more adult menus.

We also have the "they aren't asleep but they are resting" get out in the evenings. DS listens to audio books and DD reads and comes down every 5 minutes to say she's bored.

what time do they go to sleep generally? what time do you go to bed?

We have two with ASD but we’re fortunate in having a nanny part-time and grandparents plus my sister.

Our marriage has been good overall but definitely ups and downs. My youngest is non verbal with high support needs but his behaviour is quite good so we are luckier than many.

Getting to a place where both can go to bed alone was a game changer.

Say that but I’m the time I typed my reply the youngest has got hold of the yarn I just sorted to make a bag and tangled it beyond belief.