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 and Something Special got all of us onto Makaton!

Also, the thing that all kids benefit from is maternal happiness.

You need to factor in giving yourself a break. It's important that you can have some less-hyper-aware time for yourself.

You must be knackered, and this is for the long haul, so, if screen time means you can keep up the pace then, thank goodness you can provide it.

Thank you thewaronpeace - that made me cry. I’m so happy your son is doing so well, you’ve clearly done an incredible job. You’ve given me back some hope which has utterly evaporated over the last year. I get this huge jolt of happiness when there’s a tiny bit of progress but it doesn’t last long.

DT1 is easier because he does get really into things and we can do them together. DT2 is more of a challenge because he is interested in so little. Singing songs is my go to because he is transfixed, for a short period at least.

I just need to have a little cry and then pull it together. Enjoying the calm while they’re at nursery and I have a couple of hours til I have to pick them up so I’m going to lie down :)

I know how hard it is with only one child with autism so while it might not feel like it, you sound like you’re doing a really fantastic job. Give yourself a break! 💐☕️

I would remove the ban and give them the screens back. Saying no screens until they talk is far too simplistic. In your shoes, I’d be using the screens to encourage communication. You said one of your twins will point at the iPad and the other take you to the remote control. That’s amazing! It might not be speech but there are plenty of ways to communicate without words and they’ve worked that out. Encourage it! Don’t give them the message that communication doesn’t lead anywhere.

We did Hanen with our DS and were told to put things that he found highly motivating somewhere he could see them but couldn’t reach without our help. Then when he wanted it he had to communicate with us to get it. Firstly taking us to it, moving onto pointing at it and working up (after a loooong time) to asking for it (single words moving to questions eventually).

Yes, there’s no harm in trying to reduce screen time. I think most of us would benefit from it but I don’t think you need to remove it completely.

It sounds like you do really have your hands full OP. I do not have experience of parenting children with complex needs but hats off to you for caring and working hard to meet their needs. You have done a lot to get them assessed and supported.

I would echo the getting out of the house bit though. In my parenting days before tablets I would have gone mental if I had to stay indoors all day. Is it not possible to find a small fenced in playground that would be safer and more manageable? Or go to any music clubs or library story telling events? If not I would still recommend some long walks round parks with the buggy, feeding the ducks etc. I spent a lot of time yomping around - to the shops too - but also wandering through local woods and parks - sometimes meeting friends too for a cuppa. The fresh air would be good for you and your DC.

I also used to involve my DC with some chores. Rinsing out (clean) pots and things, sweeping the floor, sorting socks. Of course it would have been quicker without their 'help'!

Or I'd set up little games - like hiding a toy in the room and them playing hide and seek for it.

Other than that I'd say cold turkey is a bit extreme. Everything in moderation. If not cut out CBeebies entirely - sometimes you need a chance to get on with prepping meals, housework or having a cuppa and that's fine. All day is a bit too much - but you know that yourself.

Good luck OP.

Adult ds withASD
Screens lifesaver

More tO point ds communicates with iPad with grid for iPad because he has no verbal speech
Without this he would not be able to day what he wants and needs or where it hurts etc

He learned to read watching videos ABC 123 ones

Let DH do no screens when he is in sole charge if he wants.. ha ha...

Screens can be a way into your dc world
They can be communication aid
Entertainment
Travel aid
The only thing that keeps them quiet and entertained in waiting rooms or elsewhere..do get them used to using headphones

Your dh is being ridiculous
But let him at ot when you not around

Of course try also have outdoor park fun etc with screens to one side
But dont underestimate value of tech for communication

Look up aac apps like grid for ipad
Proloquo
Etc
Adapt to most simple level with items they use daily
iPad can be your dc voice

For ds pecs was limited success but dynamic ipad based aac he took off
Get slt to assist

Back in the day it was portable touch screen PC but now on ipad

OP are there any opportunity groups where you live? I have two autistic children (one with other complex needs as well) and opportunity group was a life saver. If not, you should be able to access short breaks activities through your local authority’s local offer. I salute you, it is hard going but it won’t last forever I promise

Yes I can definitely see DT1 flourishing with AAC when he’s a bit bigger. He has a ridiculous almost innate understanding of how iPads operate, it’s spooky. Struggled with the touch screen at first but once he mastered that he was off - understands buttons for starting a game, returning to menu, moving to a different app, going into folders to find apps, the home button etc. I didn’t teach him any of this, he just figured it out on his own. He’s very smart.

The difficulty is that he doesn’t understand communication as a concept - the one sign he does now is a huge breakthrough as he’s finally understanding that things he does prompt responses and getting things. I think with a bit more work on that, he may be ready to take small steps into AAC. I use Visuals2Go to make his pecs cards so I may try him with that.

I think I’ve just been panicking the last couple of days about what the hell Im supposed to actually do without screens but have decided this morning I’m going to give it some time. They’re at nursery again tomorrow morning and then it’s the weeekend. We can then have a discussion on Sunday night about how it’s going and whether we can do another week. We have quite a lot on in the next couple of weeks including a blood test for DT2 which involves no fluids overnight which is going to be torture (he drinks at least 1.5L overnight, which is why he needs the test!). There will be screens that night if he needs them and there will absolutely be Hey Duggee on an iPad during his blood test because he needs something to keep him calm and distracted. Beyond that I’m open to trying it for a short period of up to to two weeks and then having scheduled screen time - they are good at understanding routines so I’m hoping this is feasible.

(((((Hug)))))

I’m exhausted just thinking about your life - you’re doing extremely well!

I think your approach to DH is lovely, it’s very easy to get into the ‘I know best’ mindset & not be open to things.

However, I’m not sure he’s fully understood what he’s been reading this time or the value of screens for some children. I think he might be actually delaying their speach & other communication skills.

Maybe do some reading together & rethink this plan

☕️🍰x

I’m definitely not agreeing to it longterm - as you say I think there are big benefits to screens used correctly in ND kids (and adults). We just have to stop defaulting to it, and I can see that a period with no screens could be a good reset on that behaviour so they’re not expecting it. It’s going to be tough but just a couple of hours break this morning has helped me calm down about it, along with all your lovely support.

@Buscake what’s an opportunity group? I haven’t heard that term before!

I think there are options locally - short breaks etc. We are just going through the Early Help Assessment process and just had a referral to the CHAD team, mainly to see if they will support us to apply for funding for special beds for them but should open more doors as well.

We don’t have any family around - only one grandparent but she lives hours away and we see her maybe once or twice a year. We see my sister a few times a year and she’s fantastic but very busy with her career. We are going up to visit her in November and then she’s coming down for her and I to do something special for her birthday, which I’m really looking forward to. Having the homestart volunteer has helped a lot - I fear that the boys just haven’t been exposed to enough people just being people, having conversations etc. They don’t see me cooking as it’s not safe for them to be in the kitchen. We do online shopping as them in a supermarket is a hellish idea etc. We’ve gone out of our way to work around them rather than them having to fit into our lives and I don’t think it has done them any favours so we need to have an attitude shift. DH and I were talking yesterday about dividing and conquering - so rather than leave one of us at home with both while the other run errands, we are going to take one with us. Feel terrible that we haven’t done this but feels like we’ve just been firefighting for three years to be honest.

Sinkgirl
I never had help from family and exp was useless but that is another story.
Get ss assessment.
Ask for direct payments to have few hours a week help.
Start asking now.

@SinkGirl it is a group for disabled preschool children where you can leave them and get some respite for yourself. They are around other children with similar needs, being looked after by experienced people while you get a break. May be something you could look into. Homestart should really help, and your idea of doing things separately can only be a positive. Removing the screens must have been a big change for them to deal with. Do you use visual timetables/now-next boards etc?

Huge hugs, @SinkGirl. Dealing with twin toddlers is hard enough, without throwing autism into the mix.

I can only speak from my own experience but DD(5) has definitely been helped by using an iPad. She has Down’s syndrome and autism and physical delays, but she’s learned so much from watching Peppa Pig or nursery rhymes on YouTube Kids. She loves pretend play, and lots of the scenarios come from things she’s seen on the iPad. She also has a huge vocabulary, which I know is from YouTube etc.

It’s also been good for helping her to calm down when she’s dysregulated and decompress after a day at school.

I don’t think it’s fair to compare screen use in children with disabilities with use by typical children. For our children, it’s a safe way into understanding the world, when other routes either don’t engage them or aren’t immediately accessible to them.

If I were you, I’d get your husband to read the link posted upthread from the NAS about screen time. It should give him a more balanced view of the opportunities provided by screens as well as the pitfalls!

Best of luck to you. You’re doing an amazing job!

@SinkGirl
You sound like you are doing an amazing job. Being a twin parent is incredibly hard, especially when they learn to walk/run but still have no sense of danger. I have been in a situation where both of my were about to hurt themselves and I had to make a split-second decision which one to jump for (and believe me, I am fast). Mine have no SNs and it was incredibly hard. I can only imagine what it's like for you both.

The lack of sleep is a killer and we both looked 10 years older after the first two. My only piece of advice (as advocated by TAMBA) is try to accept "good enough" parenting. That means a good job is not always a 100% job. If you have to rely on screens for your own sanity to stay in place, so be it. At least some of the time! You make a better parent when you are not at the end of your tether.

Hi, op. I really feel for you, life must be tough at the moment.
I echo lots of other advice here but wanted to add:

Routine. Morning walk, toddler group, snack time, wet play at the sink, outdoor time (rounded scissors for cutting leaves, wet paintbrush with water for drawing in the patio etc)-doesn't really matter if they're mouthing/not getting involved at first, let them see you do it.

Tv. I think it's fine to see some TV but be selective with what they're watching and keep it as part of the routine.

Be selfish (!) Think about what you like to do, be it housework, gardening, cooking, yoga etc and let them join in a little alongside you, but if if they're not engaging with it at all, they at least see you getting some pleasure too.

Sorry if these ideas are unrealistic, but I really think it's important that you retain a little of your life here too. You can't feed anyone from a pot that is empty.

One of the reasons in your original post that you wanted TV was for yourself as you are isolated. Could radio and podcasts do the same thing? It doesn't have to be child appropriate although it can if you want. I'd opt for light / music radio generally and half an hour (after lunch?) when you listen to something edifying or funny.

Ds quotes from YouTube videos too
Screens help with language

I'm glad you sound calmer and have a plan. I think you're right it helps to have a detox from this kind of thing every so often so you can stop defaulting to it - I need to do it as well

I agree stick podcasts or radio or spotify on in background for background noise if the silence is bothering you.

I like your idea about divide and conquer as well. And you should each have time to do what you want to do, even if it's just half an hour once every other week.

Thanks all - we had a much better afternoon as I’d had a break this morning so I had some energy. DT1 got interested in songs for the first time and was giggling his head off. We had some time in the swings (okay, about an hour!) and now they’re asleep since they refused to nap. Hopefully that doesn’t mean a 3am start for me tomorrow!

Be kind to yourself.