So sick of not being the parent I always wanted to be

[thegreenlight]

Both my sons are autistic (6 and 11) I spend all my time trying to appease them, anticipate melt downs, dealing with melt downs.

I book things to do and the eldest will never want to go (he said he would only go to Alton Towers this weekend if we bought him robux and said similar about going on the slides at a water park last week) he won’t eat with us, whenever we sit down to eat he will say he’s not hungry or the food smells horrible. He lives on toast and crisps. He winds up his younger brother and makes him cry and hit and in turn the massive fight continues day after day.

I get constant phone calls from school about the both of them. We are going to Disney World Florida in the half term and he just says it’s ‘mid’ and doesn’t enjoy going. Every party we have had for him he cries and melts down. We can’t go out for dinner as one of them will create. I can’t go shopping as they run around screaming.

They are incapable of self care - they are physically able but won’t. Massive meltdowns from the eldest when being asked to shower, screaming every morning from 6 year old when he’s asked to get himself dressed. I’m exhausted. DH and I are exhausted.

We try to be strict with them - husband especially so - but it doesn’t work. I have read every parenting book going, tried every chart but nothing works. To be fair they are much better at home than school. I see people having actual relationships with their children and doing things together and feel so jealous. I didn’t want a boy because of the likelihood of autism and here I am with two of them.

I feel like I’m existing and both DH and I go straight to bed as soon as the kids are put to bed. I am caught between the urge to be a good mum, feed them home cooked meals, go for walks and days out, throw them parties (because they never get invited to any one else’s) but it all ends in disappointment, frustration and sadness.

I don’t know if I’m being unreasonable to stop spending money on taking them out because I feel I should and leave them home with their nanny (she lives at the end of our garden)inside on their bloody screens and go with DH to enjoy life. Nanny has only just moved in after we lost dad and I would never leave the boys before so maybe we have a lot of date nights to catch up on.

Do I keep trying to live the life I expected or do I finally give in and start to do things for my own enjoyment?

I have an autistic 10yo.

First, you need to adjust your expectations- we don't do anything overstimulating like theme parks or noisy soft play. Her sibling loves them so we take her separately with a friend. We stopped paying money for expensive disappointments. I know it can be difficult shelving the things you thought you would do together though. You can lean in to their special interests, if they have some, e.g. going to endless train based attractions (in our case wildlife parks).

You can set limits on screen time. There's an oft repeated trope that children with asd 'regulate through screens'. But you can work to give them other ways to regulate and set limits on screen time- on time or type. They will find something else to do eventually even if you have to put up with a 60 minute special interest monologue first. Will they read? I don't buy that autistic children shouldn't have screen limits. In fact it's more important because of the hyperfocus- otherwise you end up with kids watching YouTube until 3am. Dd would watch one or 2 YouTube channels 24/7 if we let her so she needs very clear boundaries (which look different from her siblings boundaries).

Which sports have you tried? Things like climbing which are very self contained can work well (dd likes paddleboarding and hiking). She couldn't manage group swimming lessons at all- sensory nightmare- so we went just to muck about and then she had 121 lessons. Now she swims with a SEN squad and they also do specialist teaching so it might be worth looking for something like that- a lot of swim teachers are a bit under qualified with SEN. I hear you on the bikes, it took until age 9 but we did get there, again look for specialist coaching.

I know it can also be quite hard to look for specialist sessions for them, it's a bit of a shock to realise they won't manage classes and activities with other children.

Are there any autism charities near you that run any clubs? We have a regular activity club plus special outings to things like trampolining that the staff go to as well to support, and they have a holiday club too. Have you looked at your council's 'local offer' page?

Sorry loads of questions! In our case DP was much better at adjusting expectations and so I've learned from him, and as she's got older we've been able to find more things we can do together.

I know it's exhausting but and I hate sounding harsh here but there's not a huge deal you can do about it, and that's ok and it's ok for you to feel the way you do, but there will come a point where you will realise it's not going to be the family you wanted.

As for the behaviour you just have to keep it up and keep being repetitive and they will get it eventually.

So there are things they love but they can't tolerate them for a long time? I think you need to adjust your expectations a little and accept that they only want to be out of their comfort zone for small bursts. If one of them was physically disabled and used a wheelchair that would be an adjustment too. The reality is you have to children who need to experience life differently to other. I think you and your dh might be better off taking turns to have time away from the kids to pursue your hobbies as well as maybe once a month or week doing something together.

I think you're probably missing what he loves, he loves the idea of rollercoasters, he loves how they are built, he loves the idea of riding them. Unfortunately riding rollercoasters involves being around loads of other people in a noisy environment and the actual experience is all far too much. That's why he wants to watch on video rather than go - but also loves the idea of going.

When you went to the Gaming con, they loved the idea of it but the reality was again completely overwhelming. If you haven't tried already noise cancelling headphones might help them cope and lots of time out in quiet spaces if either place has them.

What you need to do is use the things they love in ways that won't be overwhelming for them if possible. So they love talking at you about their favourite subjects - maybe they will go for a walk if they can talk at you during that time? I had a lot of walks with mine like that when he was younger, it was the perfect way to get him out.

I would see if you can use their love of screen in a more positive way. See if you can get them into programming - they may do Scratch at school, it's free and a great way to start. Mine (ASD/dyspraxia) started on Scratch and is now looking to do software engineering. If they love the design of rollercoasters, I bet there are games where they can build and design rollercoasters or what about a lego rollercoaster?

I think with screens the best thing is set times. That way they know what they will have them and when they will go away and to have quite set routines every day so they know exactly what will happen after screen time ie dinner. The more routine you can build into their day the easier the day will be, routine is so important to kids with ASD - but also warnings before any transitions, 10 minute, 5 minute and 2 minute is ideal. No one said it was easy!

I would stop reading parenting books and just concentrate on reading books about parenting kids with ASD and ADHD. It's all really quite different, also don't get advice from people who have no experience of ND kids. Good luck! I promise any hard work you put in to parenting them as ND kids will pay off.

I agree with people saying be the parent for the kids you have. I have an autistic 11YO DS and a 9YO DS. 9YO isn't as bad as his brother but is prone to anxiety. Honestly, my expectations for my parenting are somewhere between rock bottom and the basement. Alive and fed is my standard.

Both DS went through an obsession with rollercoasters. But absolutely detested Alton Towers and I will never take them to any theme park ever again. I think you are bonkers for even thinking about taking them anywhere like that. The noise, the queues, the people. It's asking for a meltdown.

I let my kids have days at home where they do nothing but sit on screens. 11YO likes to stim a lot and entertains himself by pacing in the backgarden for a few hours. 9YO does like to draw and potter about a bit on those days. I think it's a lot for them being at school five days. They need the time to decompress.

I've never been on a holiday with my kids. They won't stay anywhere other than home. I cook three different meals some nights. I get woken up at 7am on a Saturday morning with the 11YO explaining black holes to me. I never take them anywhere fancy and I'd sooner saw my arm off than take them to the supermarket with me. I can't put my bins out without them both following me.

The saving grace in all of this is I split with their dad last year and now have child free days and weekends where I can do all the stuff I can't while the kids are here (like go Asda!) I think you need to take advantage of your mum more and use the time to spend just you and DH. Also don't feel guilty about dumping DH with the kids at home while you go out and do something yourself.

I empathise totally. But I also think you're expecting far too much from your kids.

This sounds really difficult. Anyone would struggle. My only thought on this is if they don't want to go to Disney, alton towers or eat in restaurants save money by not doing it. This is very different from the developmental stuff that's good for them like going for a walk or eating veg. I think its completely reasonable for a kid to say look I don't want to go to alton towers. If instead of a birthday party they want a computer game day, trip to a store or whatever I'd embrace that instead of saying what should be.

Try to chill on the extra curricula stuff I think we all go overboard with it tbh. It can't be a priority. If their behaviour improves that would be better.

The behaviour stuff sounds tricky. I found the book siblings without rivalry useful but not sure if it will help in your situation. I hope there's some advice out there.

However I don't see how screens help anyone. I'm not blaming you at all of course it must be difficult. But I'd try saying OK screen free hour, let's do x other thing they enjoy. Yes there will be meltdowns but if there are anyway might as well try something new.

But yanbu, it sounds tough.

Try and limit screen use. Easier said than done.
Do they eat and drink healthily?
Try and stop and coke or chocolate or sugar.
Can you get an expert psychologist in?
To advise?
Can you send one away with a brother or cousin for a trip?

Big hugs @thegreenlight you sound like a wonderful parent who has tried everything. It's just hard. As a NT parent with a ND child, now young adult I've swung from feeling I made progress understanding them, feeling hopeless and clueless, feeling nobody understands them like I do, feeling I know nothing....and round and round and round. Have some date nights with your husband! Whatever else is true, you need that. And it'll probably make you feel fresher for facing the challenges.

This!

Many of us fall into the trap of trying to mould and parent this hypothetical kid. My kids aren't autistic but I sometimes find myself assuming they should be interested in x or y or respond in such a way. OH tactfully explains we need to work with the skills and personality of the kids we have.

Just a thought as well op- DC sometimes develops obsessions about a 'thing' but it's the idea of the 'thing' not the actual experience she wants- if she gets it she then appears indifferent to it. Could be the same for Alton Towers? I'm NT and I find places like that unpleasant.

Likewise you don't have to go on holiday to a big resort- where they will be more likely to meltdown anyway. Could you self cater and order in every night, keep it low key and set your own schedule. There's a middle ground, which I know is more work, but a busy AI buffet is a sensory nightmare.

Just want to point you to ARFID for the one with a restricted diet. Looking into that might help you a bit on the food front.

And also, you have two kids. Whether they are NT or ND, sometimes one is just going to have to be dragged along to something for the other. It's good for kids to realise they have to take turns sometimes. So let him have a face on him if his brother has fun at the park. You never know, he might eventually join in.

Lego?

You're parenting the children you think you should have, not the children you actually have. That's also why it's making you so unhappy, you're trying to ram your square pegs into round holes all the time and no matter how hard you try they never, ever fit.

You need to change the holes, not the pegs (kids).

The older one is even able to communicate to you that they don't want to do the activities you plan, and you aren't hearing them.

Parent the children that are in front of you, not the children you imagined you'd have when you were pregnant.

Can I also just suggest with the self care-this is really non negotiable and probably needs to be a priority. How do your sons respond to routine? For me, I would be choosing 4 or 5 things a day that absolutely have to happen before a screen turns on. Eg brush teeth, wash/shower, get dressed etc. Each achievement given a set time to do it amd once completed earns X of screen time-but if you don't do them all, no screen time.

You WILL get push back on this. But over time, it will become ingrained in their daily rouine, which is what you want. These things are really important, I think.

That's good to hear - sounds like a safe place. Hope you have a lovely holiday,x

You said he does go to the park and sits on a swing. That's ok. Better than being at home.
Can you get him a scooter? Might be ok on that?
What about chess?

Do you have friends either autistic kids? Could you go together?

Since you asked, one of them is 7, and has never played a video game. Doesn’t have an iPad. Isn’t allowed to watch youtube (never in control of YouTube by themselves - we may put one YouTube video like a “how are pencils made” type thing on tv and watch as a family, then turn it off).

There are so many studies about the detrimental effects of screentime on children. Others have linked them. Whoever told you screens HELP them regulate was lying. Since you’ve said they have angry meltdowns when they lose a game, I’m surprised if you really believe this.

Eleven year old boys are difficult to occupy, true, but the six year old? You must know that they should be playing and drawing and stuff instead. They’re six. What did you do when you were six?

If you feel like you must do screens, then you can stick to stuff that’s on Cbeebies or CBBC - horrible histories, etc. Youtube is literally just guff that destroys their attention span, has no value, actively harmful influences, gamling/“loot” boxes/misogyny/dumb pranks, you name it. You can’t monitor it. Put a film on tv if they need screentime to relax. When you were eleven, could you watch a video of whatever you wanted online? There’s no angle where unfettered access to YouTube is good for children and young teens.

I'm sorry. I don't think you came for fixes and advice but for support ? It's shit. I too mourn the parent I thought I would be. The family I thought I would have. You're doing your best. Look after yourself. You're not alone. It's exhausting and you have to last the distance. Find the small wins. I try to remember that jealousy is an ugly emotion but we can't help being human. We have to believe it'll get better.

I wonder about whether it's about your kids being part of groups of kids who also have ASD?
They're both really at the age when the start to develop outside the home, but it sounds like you need to find the right groups.
And get out yourself, parenting a ND child is exhausting.
There is a grieving process when you realise that typical family days out either don't work or involve a degree of military style planning which is exhausting before you even leave.
I went to Disneyland Paris with my little one who has ASD, you're right, it is a good place.
But a crowded Lego convention was a disaster as was a fancy Santa experience. You never really know what it's going to be like and that's hard.

It does sound like the 6yo is following his brother way too much.An 11 year old might be surfing YouTube or gaming abit i guess, but a 6yo should not be doing those things as a matter of course on a regular basis.He should be playing and exploring.I do understand the autism must make them more inflexible and challenged by certain situations, but it does sound like they are also allowed to control your lives too much in general (especially the older one) they still need boundaries, expectations and to understand how to live in the real world, considering others.You can make adaptations to make things more comfortable and less anxiety inducing for them without those things not happening at all.

“as autistic people are very self-orientated, they can’t see things from others point of view so will keep doing it again and again.”

that’s not necessarily true.

you need to cut their screen time, you just do. They’re addicted to screens by the sounds of it and whilst cutting it down will be awful to start it’ll be beneficial in the long run.

Yes isn't that actually only the case with SEVERE autism, where they are doing things like head banging etc and it can help calm them to focus on something less destructive for awhile?

I feel for you op. You are mourning the life you envisaged and it is understandable you feel frustrated.

I have children (now both adults), with Autism and ADHD. I have not particularly limited their screen use. They had tablets at primary school age and were allowed computers in their rooms from age 13. Neither are any worse for it. Ds is at a RG uni doing maths, DD is planning to study Classics at uni.

I learnt to pick my battles and parent strategically as they grew older and I understood them better. I definitely did not have that down when they were as young as your boys though.

What I understand much better now is how emotionally immature young autistic people can be. I have a younger NT teenage DD, she is years beyond her siblings in emotional maturity and self awareness. How much easier that makes life for her and everyone around her!

Her siblings get overwhelmed it is everyone's problem not just theirs, they cannot always help that but it is true. They are hugely, intelligent, insightful, original and creative thinkers but they cannot see how their behaviour impacts others sometimes and will get distressed if you point it out. They are kind, politically aware and socially responsible people with a fragility born of living in a world they feel at odds with. Computer games like Pokémon are a comfortable sanctuary where there are rules and predicability. Ds also plays chess competitively.

Age 6 DD was exhausting, she would wander off and talk to strangers without a backwards glance. She was the one getting lost in soft play centres or at weddings and that terror I would feel when I couldn't find her still chills me now. She would get obsessed with things like watching live birth videos, for weeks then drop them and move on she lived in a fantasy world.

It was impossible to go abroad and holidays that ds and DD could manage were limited. But tbh it didn't matter as going on hols with young kids is no fun anyway. This year we are going to a cottage for a week and they can do what they want we will enjoy being together.

It sounds like they’re addicted to screens and that’s your main problem. Autistic melt downs are hard work but if your kids are addicted to screens and constantly seeking stimulation then you aren’t getting the respite from being out in nature than many autistic children and their parents rely on.

We never do “family days out” with my DD but she loves being at the beach and in the woods. I think we’d all go mad if we didn’t have that.

No advice, just deepest sympathy. What an absolute shit show you are living in. You do not deserve this, how terribly sad.
All the best OP.