Finding screen ban so hard - AIBU?

[SinkGirl]

We have three year old twins who are both autistic, non verbal, one has other disabilities as well. I have been doing my best in difficult circumstances since they were born (DT2 was very unwell from birth and my health has been impacted since the pregnancy too).

I’ve definitely relied too much on CBeebies to keep them entertained, especially DT2 who lost all interest in toys / play when he was 18 months old and has no ability to focus on anything except the TV. DT1 is very bright and uses iPad maths and English games often (things like matching colours and shapes, sorting letters into words, words into sentences, etc).

I have done everything I can for them - referred ourselves to SALT and portage, carried on that work at home daily, pushed for paeds referrals that led to them both being diagnosed at 2, applied for DLA, blue badges, got them into nursery, initiated the EHCP process when nursery didn’t bother, applied for homestart etc etc. Just quit my very part time job as I’m not able to manage it on top of everything else.

DH has been reading a lot of pseudoscience websites about “virtual autism” and thinks that if we completely cut out screens for them they’ll learn to talk and improve their social skills. I think that’s a massive over simplification and although I do agree that less screen time would benefit them, it seems a bit extreme and a bit mean to remove the only thing that DT2 in particular engages with. I understand the hope is that he will then engage with toys and with us but I’m unsure how realistic that is.

It’s been two days and I’m slowly going mad. Over the last two days I’ve read the three books they like over 50 times. I’ve sung the nursery rhymes they like countless times. I’ve tried every age appropriate game in a book of games for autistic kids. They’re interested in none. I’ve tried colouring with crayons (tried to eat the crayons), tried playdoh (tried to eat the playdoh). Spent half an hour on the swings in the garden multiple times whenever it’s not raining. Tried everything I can think of, it fails quickly and then we do... nothing.

DT1 is playing with an old baby walker where you press a button and it lights up and plays a tune. Over and over again. Can’t see how this is better for him than playing the games on the iPad to be honest!

I woke up this morning dreading the day ahead. Then realised they’re going to nursery this morning and felt relieved, which makes me feel terrible.

Everyone I know who’s done this has kids who will engage in pretend play, could get involved in baking a cake or go on a trip to the shops etc, none of which is possible with my two. So WTF do we actually do all day?

To be honest they’re coping better with it than I am! We’ve had a few tantrums but nothing out of the ordinary. DT2 has recently started pointing so we’ve had some pointing at the TV, and DT1 keeps pushing me over to the shelf where the remote is.

I feel like such a shitty parent for being at the stage where I can’t cope with a day with my kids without relying on the TV. Just the lack of background noise is driving me crackers.

How many people with toddlers have no screens at all and how do you cope? I realise any suggestions may not work for us because of the ASD but maybe people have some idea.

Oh fuck off with your sneering attitude

There are interactive games you can play on them so it's not all about sitting passively watching something.

@Goodlookingcreature. What a horrible post. OP doesn't exactly have things easy.

Sounds a bit all or nothing - could you set a time when the TV goes on? We used to do no tv in the mornings ever and then try to leave it off until 5 when it was time to cook dinner. If I’d had twins it would definitely have been earlier I’m sure!

Also used to stick a film on at 3 or so if either of us were exhausted/ poorly.

I don't think you need to feel guilty because you find parenting small twins tough and exhausting- that's exactly what it is.

Other than screens, what sort of things do they like? Are they constantly on the move? Water? Climbing? Music? Puzzles?

At that age most of our best times were out and about. They also liked the bath, so I would sometimes put them in the bath for an hour in the afternoon, followed by tea and telly.

Can you put some music on int he background if its the lack of noise you are struggling with. Usually instrumental versions of all everyday hits have no lyrics if you want them to not get confused with speech.

I would let them in the garden more. Buy all in one rainsuits, then it doesn't matter what the weather is like. Can you add a seesaw, some large diggers or cars to push around and fill, chalk for the path, water and brush for the walls, sandpit. Bubble machine.

Indoors, what kind of toys do they have? A wooden train track can pass a lot of time, duplo large lego, Books that are just pictures with lots to find ie find the pig, wheres wally. Aquadraw water painting, megasketcher drawer all clean and can't eat. Stickle bricks.

Oh my god, you don’t work. You’ve plenty of time to rear your own children instead of expecting cbeebees to do it for you. You’re two days in. Get used to reading, playing and actually parenting them

Please share your personal experience and wisdom of parenting autistic twins, with severe health issues yourself. Obviously you have extensive experience?

Oh yes and getting out. I honestly think I could count on one hand the number of times DS and I didn’t leave the house all day. Not because I’m a great mum, the opposite! I could no do a whole day in the house with a toddler.

Mostly though, please be kind to yourself - it sounds really tough.

Other than screens, what sort of things do they like?

This is exactly the problem - DT2 likes / enjoys nothing besides three nursery rhymes, and one book. Which have been thoroughly worn out over the last two days. I mean hours of singing and reading the same three songs and reading the same one book, until even he was bored of them.

DT1 is easier because he will engage in an activity - building blocks, a cog toy he likes, Duplo etc. It’s for short periods but it’s something. DT2 enjoys nothing at all. I don’t think people understand what that’s like.

Oh and I did work - I quit my job yesterday and feel shocking about it, but thanks for that.

Thanks for all the advice, will read properly when I get home.

I would put all the screens on and have a lie down on the sofa while they watch them. Re start the experiment on Saturday when you leave the dcs with your husband.

Getting out of the house is really difficult. DH took them to the park on Saturday by himself for the first time ever. They have no sense of danger at all and will bolt in opposite directions. We’ve been waiting a few months to have some work done to our garden which is happening week after next (thank god) - at present it’s really unsafe for them so very difficult to be out there on my own with them. We just got a double swing for the garden and it’s the only thing they want to do out there, but they hate wind and rain (poor DT1 starts cowering and clamping his hands over his ears) which makes this time of year tricky.

I raised three NT DC without TV back before tablets etc were a thing; we got a disabled TV (receiver removed) so we could play purchased or hired videotapes (remember blockbuster?!) when they were 6, 6 and 3.

The twins interacted and entertained each other a bit but it was pretty full on! I found messy play really stressful because of the clear up and now feel guilty I didn't get over myself and do more cooking etc with them. Going out and being outside with them was a lifesaver, also groups and activities like Tumbletots. Building a routine of activities helped. I could never take mine swimming because you need one adult per child, but perhaps you could, with your DH available?

I salute you for being willing to trial his idea, but do be ruthlessly honest in critiquing how it's going!

I do recall how just getting everyone ready and out through the door felt like the day's major achievement!

I have to say you sound as if you're doing a great job in advocating for them and being a great all-round parent!

I should add, the biggest issue with DT2 is mouthing - he chews and eats everything he can get his hands on. Wood is his favourite but if we are outside it’s grass, stones, sticks and on one memorable occasion a dried dog poo at the beach. I can’t turn my back on him for a second - at least when the TV was on he was distracted long enough for me to change the other’s nappy or make their food. Having DH around the last couple of days has helped with that at least.

On top of this I’ve had no more than a couple of hours sleep at a time for three years, so I’m wiped out completely and utterly. When they’re awake I have to be awake as it’s not safe, and they can be awake for hours in the middle of the night. Have just got the ball rolling on applying for help from social care / OT with adaptations to the house to make it safer for them. Plus going through the EHCP process for both at the same time, appointments coming out of my ears for them and for me, I’m totally overwhelmed right now. I just wish I could engage them more.

As for learning to play with them, we’ve just finished a year of portage for DT2 and nearly through the year for DT1. DT2 wouldn’t even sit and touch a toy when we started, and a year’s worth of very bloody hard work has got us to the point where he will post a ball or use a peg men toy for five seconds. That’s our achievement for a year’s worth of work. So I definitely don’t need any lectures on learning to play with them, we’ve had a year of intensive work on encouraging them to play.

I have some plans for the garden once the adaptations have been made and I’m hoping DT1 will adjust to the wind and rain in time with gradual exposure.

I personally would like a more relaxed approach to screens but if he feels we need to try this then I’m willing to try as long as he continues to be supportive of it.

It sounds really really tough, I would resort to what is easiest, no point knackering yourself out. That said I think my nearly five year old is somewhere on the spectrum and he just wouldn’t bloody play, I tried everything, he’s just never going to be a kid who likes role play/imaginative play. I remember I used to suggest he bring me a cup of tea from his kitchen and he’d look at my like I had two heads. He wanted my one on one constantly and didn’t get TV until he was 3.5 (and then the same programmes over and over). As he’s got older I’ve seen a real leap and he still won’t do role play etc/trains but is really into Lego and board games (probably attracted to the rules of games!) and magformers. So what I’m clumsily saying is that this may be a stage where they watch a lot of TV but maybe in a year’s time they might be into something new. I guess the other option is to build Tv into the routine so an active morning out at the plaupark etc (I know you said it’s difficult) then home to lunch and then TV on for a while early afternoon. Etc

I'm quite strict about screens, but totally appreciate your situation isn't usual. I can see it from both sides, and think you need to meet in the middle as a compromise. Put a time limit on the "absolutely no screens at all" plan, say two weeks, call it a "digital detox", plan loads of getting out of the house and make sure DH is on the ball. Do some research into apps or shows that will have some good educational content/benefits to them -I recently saw and was impressed at that Yakadee on cbeebies, it's helped my almost non verbal nephew quite a bit, according to SIL. Then talk with DH and agree on a certain amount of good quality TV at times when you really need it, when making dinner etc.

The only thing that worked with my dc was copying what they'd watched first. Eg video of a digger digging then we did it after, then dc would have a go on their own. DC still only plays out things he has seen from films or tv/YouTube and I think that's ok because they don't want to play the same way as NT kids.

Sorry x post

Put the tv on!!

Also I wouldn't hesitate to use reins when out and about in your situation either. Hopefully getting the garden done will make a big difference. I designed a sensory garden for a local school for children with special needs - spray painted tyres in rainbow colours, with lemon balm, thyme, lavender and the rest planted in was a big hit and cost very little. A sheltered arbour with lots of dangling mirrors and the like would be nice for those who dislike bad weather. The twin who likes to mouth could really go to town. Also lots of wind chimes, windmills. If I lived near you, I'd come and do it for you, you should have a chat with any local gardening business/family fund type place. It's easy and cheap to do, but of course the catch 22 is that nothing is easy or cheap when you have two ASD toddlers

have you/could you give them instruments...?

Thanks everyone - there’s some ideas here we haven’t tried so I’m on it :)

I think the thing I find hardest is that they don’t interact or notice each other at all - even if they are awake in their room alone, they don’t interact at all. I was promised that the hard work of twins would pay off when they got old enough to play together. They did start interacting as you’d expect as babies, it was adorable. Then one day around 12 months it just stopped and they’ve ignored each other completely ever since. I get excited when one looks at the other briefly, that’s how bad things are.

I’m struggling because I see that this is a good thing to try, certainly nothing else has made a major difference, and I don’t think it can hurt - but it’s so fucking hard. If that makes me a shit mum then fine, I already feel like one. I am doing the best I can.

I'd be trying to get out as much as possible but appreciate that's probably fucking awful with 2 non verbal pre-schoolers...

Local library? Any rhyme time style groups you can go to? Splash toddler pools nearby? Church playgroups? Kids with autism support / play groups??

If you do a tonne of research and try to plan out a weekly routine of stuff that might make it easier as you're not constantly having to think on your feet.

Plus as PP said once you've got a good full week of 'enriching' activities, you can then stick the TV on guilt free for an hour whilst you sort / clear up lunch and have a cup of tea.

I'm not saying it will be easy but I think it's okay to keep trying the same things multiple times, even if they didn't work the first time. Sometimes repetition will help to engage interest, especially when they have been so used to screens all the time, they may take a while to warm up to other activities.

Thank you RagBagMag - some brilliant ideas there for our garden, I will definitely get on that! Our garden will still be a bit of a nightmare as there are multiple levels - the whole thing needs to be excavated and levelled but it’s a mammoth job, including having pipes buried deeper.

There’s currently a raised pond in the raised decking and a raised lawn - so the pond is going and some low fencing is being placed around the edge of the lawn so they can’t just run off the edge (which happened once to DT2 and it was terrifying).

I love the idea of the nice smelling plants, windmills etc. Wondering if we can attach some sort of canopy over the decking to make a sheltered area

I’ve also got OT backing to apply for an expensive sensory toy centre which is partially funded by a charity so I’m going to apply for that. They love the sensory room at a local specialist school where we go for a toddler group particularly the bubble tube. I wish I had space or a spare room to make a sensory room for them but we just don’t. Maybe we can move when they’re a bit older.

Things my autistic child doesn't enjoy/can't do:

Messy play
Musical instruments
Walking outside without putting himself in danger
Imaginative play
Craft activities

OP I think your husband is unrealistic and I don't blame you for being frustrated.

I also think you should get this thread moved to SN where you'll get some more helpful advice because parenting autistic children is not like parenting NT children and I suspect people's suggestions will make you tear your hair out ever more than you are at the moment.