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?

A lot of ASD parents claim that their children “need” screens to help them regulate but this is all anecdotal and there is no evidence that allowing ND children excessive amounts of screen time is any less damaging than it is for NT kids. There is even some evidence to suggest the opposite. My view is that in the short term they feel like they help (they give a dopamine hit so the kids are happy) but in the long term they do the opposite and don’t help ND kids to do what they really need to do which is to regulate themselves without input from screens.

I think you need to meet on the middle. There is a half way house between Alton Towers and been stuck in the house all weekend.

Rainbow1901 they are both diagnosed with autism and adhd. The eldest is medicated for it, the youngest has a full time 1:1 in school and an EHCP. Both receive disability at a medium rate. Youngest’s current school has said that they can’t meet his need and so I’m having to move him. School have been awful and not at all supportive (they are much worse at school). I’m sad for the life I wanted to give my children, the life I dreamed of having. We eat the same safe meals (home cooked) every week as they might just eat it and it’s important to sit together as a family but it’s a struggle. I can’t be the mum I always thought I would be and it’s heartbreaking and not helped by people not understanding and thinking I just need to be more strict. Trust me, it only makes it worse.

Parent the child you have, not the child you wish you had.

Alton Towers WAS his favourite place. Hyper fixated on the rides, watching videos about their design. That was why we were taking him.

I’ve got an autistic 6 year old and a toddler. We go to a lot of local museums especially when there are extra activities on such as print making or Victorian wash day. They’re places we visit a lot and we tend to go for a couple of hours rather than all day. We also go to the local forest and other out door places. We rarely stay all day and we’ve got our routine. I always take food and it’s the same pack up in a box with dividers, we never buy anything in the gift shop, we may sometimes have an ice cream.
I always take spare clothes, spare wellies and towels so if paddling in November appeals they can be dried off.
we don’t go on walks but we spend a lot of time outside and much of the time I leave them to find their own entertainment. They come in flithy and tired. I do supervise but often from a distance. we live rurally and have plenty of space. It has taken time and it’s small steps.

My autistic boys are now 19 and 13. It's been a huge learning curve, and I have really had to learn to adjust my expectations. I pushed my eldest to keep going to college when he wasn't coping, which led to a mental health crisis. This was, in part, my fault for trying to make him fit into a world set up for neurotypicals. Now, he doesn't study and he's not able to work. He barely leaves the house. But actually this suits him just fine, and once I accepted that he wasn't going to have the life I planned for him, and allowed him to plan his own life, things have changed so much. His mental health has improved. He has become more capable and more self sufficient. He is much more sociable (at home, with me and his siblings) and he is now great company and a pleasure to be around, something I would never have imagined myself saying a few years ago.
I am parenting the 13 year old very differently, allowing him to lead the way and discover his portion of the world at much slower pace. He is a much happier young person than his brother was with me pushing him all the time. It hasn't been easy but we were finding our way. It's ok to live life differently than the expected norm.

If Nanny is willing, absolutely spend some time with your husband. Guilt is a pointless emotion, especially as your boys won't feel they are missing out by staying at home.

@thegreenlight 💐it is tough. Take care of yourself, does this resonate?

https://carolinemaguireauthor.com/2019-9-3-managing-your-lovehate-relationship-with-your-adhd-child/

I understand the defensive feelings, but OP.

There is a LOT coming out now about the horrific effects screens have on developing brains. Of course they seem calm and ‘regulated’ on screens, because they’re getting their fix - a smoker is calm when smoking a cigarette, that doesn’t mean cigarettes are good for you, they’re the problem.

There’s a reason threads about bad behaviour very usually involve addiction to screens

Shardonneigghhh I could have written this - I pushed (hyper bright) DS11 from an early age as he could recite the periodic table at 5, read at 2. He can still spell any word you give him without any practice. He has a mental breakdown which led to us medicating. I pushed him and pushed him to be normal. Youngest is more of a free spirit (and was non-verbal until 5) so I am letting him lead the way. I’m just feeling sorry for myself I suppose. I will book things with DH and enjoy them.

I am sorry that you are having a hard time but a trip to Disney World? Really. I have read the thread.

My child has SEN - severe dyslexia - and all that goes with that. I took him to Disney/Universal age 12. He was overwhelmed - quite frankly so was I (having been a few times before). So we did little and I carefully monitored the stress points. He still to this day doesnt really engage with books or games. So I had to do outside activities (no sports - he is not a team player!). He loved the lazy rivers at the hotel, the driving rides, the "free" cup, meeting the occasional character, the boats/boatcars at Disney but I couldnt afford for us to take a trip. We both hated the noise at Universal and I am NOT ND.

Can I be rude now? Are you overcompensating? Kids dont need Disney - they need great parents and everything you have written here tells me that you are trying so hard. But less is more with children who struggle. They need peace and their safe spaces. We did it - he very very occasionally mentions it but it is not a highlight holiday for him.

This sounds so hard and I'm thankful I don't need to deal with this. Take that break, you deserve it. Anyhow they might miss you when you're away and be nicer after

GoodnightAdeline this isn’t bad behaviour. They are both diagnosed autistic. They cannot act any other way any more than a paraplegic could get up and walk across a room or a blind person ‘look closer’. The fact that this makes life difficult is what I am lamenting.

So sorry to hear that you are struggling with these issues but you perhaps need to go back to the experts and ask for more help and be insistent. You are obviously devastated that things have not gone the way you dreamed that they would - but if the things that you have done for your boys lead to meltdowns at their parties and so on - then as someone else has already pointed out - don't do them. You are setting yourself up for disappointment. Look into respite care so that you and your DH do get some periods of time to yourselves.
Schools have many demands on their resources and invariably are underfunded - can your social worker advocate for you here?
As you say - you are already catering safe meals - but do them for the boys - you and DH can have different meals ( you never know they just be interested enough to try something different) Children won't often deliberately starve themselves - so plate up meals that they will eat and freeze them. It does sound really hard for you but I think you need to let go of your dreams and deal with the reality that you live with and once you have acceptance you can live the best life you can within your reality.

Divide and conquer with you taking one kid and your husband the other if your Mum doesn't want to take out one of the kids on her own.

I know you won't necessarily want to admit how much screen time your kids actually have but how much do they typically go on it? Are there set times? How are they when you tell them to stop?

The fact they have something that they really enjoy might be used to your advantage when it comes to discipline. My kids were NT so I understand if this is a dumb suggestion but my kids all adored video games and I could pretty much get them to behave by threatening to withdraw their computer privilidges.

I was very consistent with screen time rules and they knew it. They were generally allowed one hour a day and when I told them they had to stop they had to stop. If they complained they lost computer provilidges for the following day and if they carried on complaining they lost computer privilidges for a whole week. They knew I meant it which meant they never lost computer privilidges for more than a day.

I also allowed them to earn back computer privilidges with good behaviour.

Other bad behaviour meant they lost their computer privileges.

I was always calm and consistent.
I know this might not work for your kids

Another thing I did was find video games We could play together such as Marioparty. I didn't ever allow first person shooters.

BTW I know all of that sounds like I think I was some sort of wonder Mum but I don't mean it like that. It's just it worked for us so well.

Do your kids do something every evening? I didn't do too many activities with my kids.

Hmm, I've just reread your OP and see that I've missed the point of your thread. Sorry about that. Feel
Free to ignore
My last post

Haven't read through all the posts however one key point that stood out to me is the fact your son is putting his foot down and saying he doesn't want to go somewhere unless you buy him Roblox, so he knows exactly what he is doing and is using this to manipulate you,I would not be having that at all, you really need to nip that in the bud.

As for the rest sounds over stimulating, why not take them out to a park when it's quiet times? That way it's not too much for them.

Just a massive handhold for you. I’m not in your shoes so cannot comment on what you should or shouldn’t do but I can appreciate it’s really really hard for you x

this will be the third time in 3 years for Disney Florida. We always stay in a Disney hotel so no driving or walking to the car and only stay in the parks until 2 at the latest before playing in the pool at the resort. I could never take them to a normal resort in the med as everyone would stare at the noises they make and the stimming. I suppose Disney is a safe place for me as people don’t judge and are trained how to deal with autistic children.

Autistic children are capable of misbehaving and your going to have to be very careful that you do not use Autism as an excuse for everything because you will end up with serious problems when your children are older.

There are some behaviours that Autistic children cannot help, ie sensory overload, over stimulated, under stimulated. However your son is blatantly manipulating you to get his own way.

Eldest won’t go to park. Will sit miserably on a swing until we go home. We usually take youngest alone but I hate not being together as a family when we only have limited time together as I work full time. Thankyou for the hand holds and the kind words. DH is away with work at the moment and that makes things seem sadder - hence me feeling a bit sorry for myself.

Its somewhere in between OP. You need to let go of your vision of perfection and do what you can with what you have. So stop trying to squeeze your sons into spaces that don't fit them and concentrate on ferreting out the things that work for them and doing those. Alongside that, yes, yes, take the help you have on offer and have a bit of life for yourself. You sound exhausted and if anyone deserves some child care and a few child free days out, it's you.

Op but then it is unfair to let the little one miss out because the older one is sat there with a face on him, it may have to be that if the older one doesn't want to do stuff say ok, leave him behind with your partner and your take the other child out and both of you enjoy it. Don't give in when he says he's not coming unless you give him such and such because he will just do it all the time.

Thegoodbadandugly I’m very aware that autistic children are capable of misbehaving. We are quite strict but the problem is they never learn, because it’s not a choice. Punishing him will have an effect in the very short term, he understands he has done wrong and apologises after he has calmed down, but he is not able to change the behaviours 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. I pull him up on it each time but it’s bloody exhausting and like Groundhog Day.

Honestly now-the day my son became easier to parent was the day I accepted our journey wasn't going to be like other people's. There was no point comparing to insta mums/ideals because it was never going to be like that.

Completely agree that Disney world/alton towers is sensory overload, would absolutely not attempt this unless 1 and 1, exit strategy and your son has learned a better coping strategy-and he will, with support.

Screen time-yes but its a delicate balance and can tip the balance the other way. Forewarning breaks and boundaries might be helpful.

Something that worked well for us was doing a low energy family activity, like a board game based on his interests/reading a book together/visiting a place of interest (we went to see a clock once. Not a big fancy Big Ben clock. Just a random clock he loved-one of his phases!). Keep bonding activities simple, focused and most importantly flexible. You will both get so much more out of them than high intensity grand gesture type days out.

Ring fence family time and alone time. For DS he needed that space to reset.

Food-textures MASSIVE for DS, but you could do cooking together or try a buffet of choices for them to try. Over time we learned DS hates mash but will eat baby potatoes for example. Fruit is a good way to experiment with textures for example.

Sorry I waffled a bit there. Genuinely know how hard it is. These things did help and it does I promise get easier-DS is 18 soon