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.

You're not a shit mum. I've seen your posts before, and as someone who has been on MN for donkey's years, I reckon you're one of the worst I've seen in terms of "having an extremely hard time". Obviously it's almost impossible to try to predict the future, but you're doing a really good job re getting them help and support, and there's a good chance it will pay off in the future. My nephew, whom I mentioned up thread, has similarly severe ASD, however he's a good five years ahead of your two, and although he will probably never live independently, the progress he has made since toddler hood is amazing. He is now a happy, loving boy, who plays with others, communicates in his own way, and continues to make great strides towards his future. Such a difference from the frustrated, locked in little boy he once was.

Goodlookingcreature - piss off.

Sinkgirl, I recognise you and it’s clear you are an outstanding mother to your children. I was wondering about just reducing screen time during t autumn / winter, which is a tough time anyway, and experimenting with a total ban in the spring. We try and keep to low screen use, but it inevitably creeps up at this time of year with the wet and cold weather and dark evenings.

I am always inspired when I read your posts, do what you need to do to keep getting by.

I find having the radio on helps entertain me. For the kids try more sensory stuff like playing with pasta in a tub, turning all the lights off/ shut curtains and playing ‘chase’ with a torch light etc

For the garden check out a website called play at home teacher. She’s made a beautiful garden for kids.

Do they like routine and structure or not bothered?

I would also recommend intensive interaction. Loads you could, read training courses etc but essentially it’s being in a space with just one child (inside, outside, wherever) and mimicking their behaviour very intentionally with playfulness (exaggerated to make it easier for them to spot). I’ve seen even children who made no recognisable attempts to communicate (non verbally either) light up with sheer joy when they realise the game you are playing. Eventually (weeks, months of this) they do things intentionally or even will copy you. Only needs to be for 10-15 mins a day.

We went to a library once but never again, at least until the mouthing improves - DT2 has chewed chunks out of every book in the house and the library looked like an all you can eat buffet to him 😂 Plus they’re all open plan and the twins won’t engage in circle time, sitting and listening to stories so they’re both just off in different directions.

We go to a toddler group for kids with additional needs, and we have a homestart volunteer once a week and we go to the park or to soft play because DT1 loves it but last time it was quite busy and DT2 was inconsolable. They’re complete opposites - if one loves something the other hates it, and when a non verbal toddler hates something that means screaming and frustration and it’s just awful for them (and us)

We’ve never taken them swimming - DT2 has a condition that causes hypoglycaemia which is massively triggered by being wet / cold (even warm baths can trigger it). But I’ve just been given details of a sensory swim session at a local school with a warmer pool so DH and I are going to try that.

We’ve tried the music type groups with songs etc - they have no interest. Just had four sessions of music therapy for DT2 who loves singing, and he didn’t get anything out of it at all which was really disheartening.

I would love to put music on in the background but apparently background noise takes away from their hearing and understanding speech - they don’t understand words at all and we use a lot of different things to try and aid that (objects of reference, now and next boards, choosing cards, signing, a bit of PECS) so if quiet will help them then I’m all for it.

Will talk to DH about it later on, and how we can be a bit more moderate for everyone’s benefit. He basically said the other day “no TV until they start talking” - so possibly several years, and possibly never?

Some kind of canopy in the garden sound sideal. Then in winter they can go out without getting wet so much, and in sun not so hot. But it will be a safe place you can let them play.

Would they like an indoor ball pit?

If you can, a large double buggy which you can strap them in and ignore if needed 30 minutes whilst you walk for some air is probably ideal.

Do they respond well to a visual timetable?

No tv til they start talking
I think he is trying here to cope with the situation he finds himself in and has latched upon this as a solution that somehow might help
There are many good educational programmes on tv CBeebies in particular that will be helpful in this. A blanket ban is just not feasible or right
Moderation and careful choices
Why does his way rule?

Thank you so much everyone, I really appreciate the suggestions and support - if it sounds like I’m being negative it’s just that we’ve tried so much, with the help of professionals and on our own.

@PEkithelp around here they call that PEIC-D (I think the D stands for our country, I don’t know why or if it’s different in other places). We have been doing this intensively daily since we started portage a year ago - any opportunity we have to copy actions we do it. It’s difficult with DT2 as most of his actions are mouthing, spinning, rocking - stimming that we are not meant to copy. I went and bought duplicates of every toy he has even fleeting interest in so I could do it more. Portage had a toy he liked but it’s 20 years old so I stalked gumtree and Facebook marketplace until I could find two. I’ve donated them to portage now he’s gone off them (of course!). It has made a massive difference though - initially he wouldn’t look at us at all after he regressed and now he will engage in a few seconds of turn taking, will look at me if we pause, will push my face if he wants me to carry on singing - there are even two songs where he will do one of the actions (both clapping, but in the right place). It all sounds so pathetically small when I write it down but it’s a big achievement for him.

His end of portage report puts him in the birth to 11 month developmental range for 60% of skill sets, and at the lower end of 8-20 months for everything else except gross motor. He’s got the physical ability of every 3 year old but the understanding and social and communication skills of a small baby. Makes life very difficult.

I'm a SALT. I agree that too much TV is not good for children as it limits the time doing other types of play. I don't think a total ban is necessary though, especially in your situation! I don't think watching some TV a day will impact on their communication development. It allows you to have a bit of a break knowing they are reasonably safe so you have more energy to interact. I have a 3yo and a baby. We allow DD to watch some TV. Could you incorporate some requesting into the TV e.g. pointing for more, choosing from two pictures what they want to watch (later on if they aren't ready yet)?

They do love bubbles - i do bubbles all the time. In fact I thought I’d found the best thing ever when I read up on making giant bubbles and have made my own giant bubble mix and very giant bubble loops (1m across bubbles!) and they have no interest at all 😂 On the plus side other kids love them so we are starting a business selling our mix and the tools. Every cloud!

I think he is trying here to cope with the situation he finds himself in and has latched upon this as a solution that somehow might help

Yep, this is exactly what I’ve said to him. He wants to fix it all, and he’s latching on to this and I don’t think he’s being very realistic. He’s a very critical thinker generally and I’ve been questioning a lot of the stuff he’s coming out with but I think he’s just desperate. He will regret it and be resentful if I stand in the way of trying. He’s a great dad and a great husband and I want us both to feel we have tried everything possible which is why I haven’t said no, I’m putting the telly on.

I think a fixed period of no screens at all followed by short periods of screens at set times (to coincide with making meals probably!) is probably best. I know DT1 gets a lot out of the games on the iPad and DT2 has shown some ability to colour match on it with some support which he’s never done with physical toys. Calling it a detox is a good idea. Just have to make sure it doesn’t creep back up to where I’m relying on it all the time.

What sensory equipment do you have? We have an indoor swing, tunnel, peanut balls etc.

Ball pit is also a good idea.

I also think autumn/winter is s really difficult time for this - the potential for 'weather' as we call it is so much higher!

OP I have done some reading on it and it’s clear that what it is saying is that too much screen time and induce symptoms that look like adhd and autism which is leading to a rise in parents thinking their child has it
With respect I don’t think this is the case here and I think a blanket ban (rather than a more calculated limited approach) has two major disadvantages

1. it removes the fact that some screen usage if diligently done can aid this. Programmes such as something special apps designed to help. It is a useful good resource if accessed correctly

2. it removes your ability to sometimes have a 30 minute downtime when they watch CBeebies vital in ensuring the one to one time is good

3. it can be used as a means to have one twin occupied so you have one to one time with the other

That’s amazing OP! Those achievements are massive. The advantage of working in special needs schools is you always have a team to wildly celebrate because a child did a twinkle star action! It’s hard being at it alone and you sound like you are doing a really great job.
From what you’ve said it sounds a little different as we were actively encouraged to copy ALL behaviour and most breakthroughs happened whilst children were doing sensory repetitive behaviour that we were copying. Tricky for you as you’ve had opposite advice to that. What country are you in?

Thanks BendingSpoons - good to hear that from a SALT!

We have tried with PECS cards for TV programmes but no joy yet - they’ll use them for snacks and a couple of sensory toys but that’s it so far. We’ve managed to get DT1 signing “more” after months of effort and now he does it constantly - he doesn’t mean more, he seems to think it means “want”, but he will use it when selecting a TV show, will run up and use it if he wants something like a snack... not ideal but having at least that tiny way to communicate means fewer frustrated tantrums.

I’m in Dorset.

That’s interesting - we’ve been told that copying the mouthing etc will encourage it further. I don’t know if that’s true, I can see it makes sense. Maybe I need to try that.

@SinkGirl I work in libraries, the staff don't care if children's books are chewed. They would rather you came in (remember to borrow a couple of books each time).

They will learn from screens too.
Your DH is being ridiculous and idealistic.

Please, please stop this madness and use the screens. Lots of children with ASD are echolaic. DD1 goes to special school and there were quite a few children who had American accents, etc., because they learned their language from TV shows, but they wouldn't have that language without them.

Even now, DD1 is almost 14 and without screen time she's relentless.

Stop being hard on yourself you have twins with ASD. If you're getting up and washed and dressed each morning, you're winning.

My DD is only 3 months, so I really haven't the faintest clue what life must be like with two autistic toddlers, but DD has pretty bad colic and the other day I said to DH that I can't wait for her to be old enough to put in front of a screen from time to time to distract her, and he wholeheartedly agreed. Idealistic parenting went out with the window on day 3 here and "coping" became the new ideal. You are doing everything you can for your little ones. You have limits. That's reasonable. Take care of all of you, not just the kids.

Sink I really do feel for you. I think that having twins with autism would be something that anyone would struggle with, and it sounds like you’re doing so well and trying so hard to figure out what’s best for them and put it all into action.

FWIW I have a child with autism, with a NT child only a year older. The autistic child ignored his brother for years. We have no iPads or personal screens at all for the children. Just a bit of tv at weekends or if they’re particularly shattered or we’re particularly busy.

Apart from general dislike of kids on screens, I didn’t want screens around my son with autism in particular, because I’ve seen so many kids with ASD completely reliant on them. Everywhere they go they’ve got an iPad in their hand, earphones in and that’s that. I was very wary of my son becoming fully addicted to the screen, so decided not to have them at all.

That’s not to say, though, that by removing screens a child then just automatically becomes a social butterfly! My son still definitely has autism. But. From three onwards his development has been astonishing. He went from having no interest in people, only his ‘special interests’, which he would obsess over and repeat lines from favourite films, read the exact same books and want to do the exact same things. To now having very wide interests, having lots of friends, and being really lovely with his siblings. I’m not saying at all that getting rid of screens was the only factor in all of that, because we never had them in the first place for one thing, but I genuinely believe that not having an alternative place to disappear away to, meant that he eventually started gravitating towards playing with his siblings and interacting with us.

The research and anecdotal stuff I could tell you about autism would take an essay. But, if I could give you a great bit of advice that someone once gave me, it’s to invest in their special interest. Now their special interest might be at this stage, banging a square peg into a round hole for hours on end. Or it might be repeatedly reading The Very Hungry Caterpillar. The point is, that when you invest time (and probably money at some point), on their special interest, they start to bring you in on it. You start to get that interaction that I know you must be desperately craving. You can also expand from those things. So if, let’s say, twin 2 absolutely loves Barbie for example. You can get them barbie themed things for areas that they’re struggling in, so if fine motor skills are a problem, Barbie pens and colouring books etc etc. Barbie balls for gross motor skills.

It sounds simplistic, but this has worked so well for us and our son has grown so much in confidence and has widened his interests and abilities massively. We used his obsessions as stepping stones into wider areas. Now we’re at a stage that he’s obsessed with Latin and Ancient Rome. Expansion on that has been trips to Roman sites of significance, trips to the library to get books on the subject, Latin word games, and a cheap off season trip to Rome booked up. This is a child who couldn’t say ‘mummy’ at 3. I’ve literally just got choked up writing that down. He had no friends and couldn’t say mummy at 3. It was bloody awful.

I remember his OT asking me why him not repeating the same games and activities was so important to me. I was gobsmacked. I didn’t have an answer. All books for three year olds are dull. All parks are cold and a bit crap in the depths of winter. Why does my own need for variety trump my child’s deep enjoyment of doing the same thing over and over again? I had no answer! It was only when I stopped trying to force my son to be like everyone else, and starting treating him like he had autism, embracing his obsessions, leaving him to it if he didn’t want to interact, that he came out of his shell. Once I took the pressure off us all and accepted him, we all felt better.

That might not be that helpful right now. You’ve got twin 3yos with autism and you’re right in the middle of it. My son is at school and I’m kind of on the other side of that part. But I wanted to offer you some hope and a bit of a hand hold. You’re in the hardest part of all, but it’s a marathon, not a sprint. Be kind to yourself. Reduce your expectations of the children and of yourself. Not in a defeatist sense, but in a sense of not expecting massive changes quickly, or even expecting it to be loads of fun or enjoyable. Caring for any toddler is full of repetition, often awful behaviour, tiredness, boredom, frustration.... you get the picture. The fact that you’re finding it hard is not a reflection on you as a mother. Not at all. It is hard. It’s really bloody hard and you’ve got the compounding factors of autism and the children being twins. You deserve a medal, not self-criticism and doubt.

You can do this, you are doing it, and they will do as well as they can because of your efforts. I found for me that making autism my ‘specialist subject’, I alleviated the frustration of being at home and the constant meetings and trying new strategies. Learning about autism and understanding it inside out gave me something to focus on, but with them added bonus of bringing me closer to my son and helping me to feel like I understood him more. It is a long road. Just keep telling yourself: marathon, not a sprint.

You’re a brilliant mum.

I think TV and technology has helped ds! His first bits of role play were fireman related....he was obsessed with firemen thanks to Fireman Sam, this then helped him settle at preschool, where they got fire engines/fireman Sam books etc to engage him.
Even ds's portage lady would use the iPad at the end of the session, trying to get ds to make sounds for Talking Tom and using it as a reward for persisting with something he struggled with.
Later when ds needed a communication device, his ability with an iPad was fantastic, and he could use his AAC device to aid his communication.
As he has got older the fact he likes Marvel and Batman had helped him with other children, it is a common language.
Now when he builds his Lego models he likes to narrate his play, something which he has picked up from YouTube Brick 101....hearing a boy with a severe speech disorder, who was non verbal until he was 5, talking about how he is putting together a Lego model...it's fantastic to hear.
Ds has had to have operations, lots of medical appointments, stints in hospital and gets sick with reflux frequently - doing these things without his iPad would be so much more difcult for him.
There are TV programmes that he loves to watch with his sisters - mostly cooking shows, and then they bake with him afterwards. They play Minecraft together...It has been great for them as siblings.
At school ds is very good on the computers, to the extent that a boy who he used to be terrified of, now looks up to him because d's helps him on his computer if it goes wrong. He struggles with just about everything at school, so this is a real strength.
Honestly, there were times when we have been up all night and ds has been screaming with reflux and we are all hanging by a thread, and then curled up on the sofa with them watching The Wizard Of Oz (another thing ds loved when younger) would bring us back from the edge.
Yes, get a balance, yes get yourself a list of 'doable' activities to fall back on, find strategies to help you get out and about....but don't beat yourself up and don't throw out screens TV and tech completely, they can be extremely useful when you have a child/ren with additional needs.

My friend has a sensory tent for her wee one who also has autism. It's a dark tent, she has lights and light up toys in there. It is the size of a wendy house, and folds away though it's used permanently

If you have OT input then ask them. I am sure that the iPad is a good tool for kids with neuro diversity. Maybe not let them play Call of Duty on it, but, otherwise, there will be a heap of things to help attention and facial expression recognition.

My pal's wee one is totally hooked on the octonauts. Non verbal til he was 6, but, absorbed all sorts of information from the programme and so his first words were "oar fish". Hurrah for years of the octonauts, they reached him in a way no one else quite could.

I have a child with ADHD and a serious screen problem. I was told by an ADHD expert that the research shows although too much screen time can cause attention problems in neurotypical children, children who are always going to have attention problems due to their brain chemistry are not going to have them made worse by screen time. I don't know if the same applies to social skills, but I would put a pretty massive bet on it being so.

So we have cut the screen time down, but I no longer feel guilty about not cutting it out, and I am no longer worrying that his attention issues are potentially being caused/exacerbated by the screens. He was going to be like that anyway. And honestly when you have very full on children it's OK and perfectly normal to want a break every now and again. It's necessary, actually, to fill up your own cup so you can pour into theirs. Your own oxygen mask first, etc.

Maybe do a period of cold turkey but then look at where you would find it the most beneficial to ease screen time back in, as a compromise?