Does anyone else with a child with ASD feel like this?

[TheLadyhasarrived]

DS is 10, diagnosed with ASD last year.

Some days it’s just there in the background and it’s fine.

Other days I hate it and it feels unfair and heartbreaking that he has to deal with it and struggle.

I wish I didn’t have days when I hate it.
I love DS, he’s amazing.
But it is hard, maybe just now because it’s school report and parents night time.

Not ASD (at present - have strong suspicions about DD1 though) but DD2 has sensory processing problems, dyspraxia, continence problems and speech problems. Absolutely lovely lovely kid - but socially she's a square peg, and very confident in her square peg-ness, in a cohort full of nice round holes and she's becoming increasingly aware that she physically struggles compared to the other kids and left out socially. Add in a teacher this year who seems to be systematically setting out to dismantle the little bits of provision we've got in place (I'm not a parent who demands anything remotely unworkable - we're at the level of a woman here who begrudges the use of a writing slope we provided so the school didn't have to get one out of their budget) and I fucking hate hate hate hate hate hate that she has to struggle with this on the quiet moments I've dropped them into school and have time to actually think on my own.

And yep, parents evening was fucking terrible.

Yes, that’s mostly how I feel. Day to day, it’s just in the background, it’s who he is so it’s our normal.

Then something will happen, like a school party, or a concert, and I see him in sharp relief agains his peers, and it reminds me how much he doesn’t get it, and how hard things might be for him in the future, and it breaks my heart.

Then we go home, back to our comfort zone, and it’s fine.

I think it’s more my problem than his. He seems happy enough, and oblivious to not fitting in. He doesn’t see the point of the social stuff, but tries his best.

Yes. I've always said it's like having a partner you love but who comes with toxic inlaws. I have 2 dc who have autism. 12 year old is doing well and manages ok unless something changes unexpectedly. 4 year old is struggling massively and I only sometimes get glimpses of his lovely personality before the autism takes control again like some kind of fast growing weed and he is screaming and curled up in a ball because I tried to put his clothes on in the wrong order by mistake.

Yes, there are days when I am heartbroken by the realities of DD's life, and other days when I am heartbroken by the realities of our lives because of DD.

There are days when I am so proud of her, watching her skills improve in things her ASD makes even harder. And seeing how her ASD means she's doing things I never did and loving them - like a sport she does at a high level, but we only got her doing it as a way to improve her social and communications skills. Go figure! But also her other skills, that you can see her working hard on, trying to fit in, and figuring things out and asking for loads of help in her own roundabout way (and lashing out in all kinds of stress you have to figure out what it is about) - and then she clicks with it, and she gets up the confidence, and she walks away doing something just the same as everyone else.

And you also stand back, and realise that you have learned so much yourself, about different kinds of love, empathy, calmness, management of paperwork, and being strategic in how you chase things and make things happen, and learned about doing things differently, and communication skills to engage with different people at different levels and talk in ways they will understand......and you are a little bit proud of yourself, for 2 seconds until the next meltdown head comes around the door....

But those little moments when, they may be very different milestones you are looking at, but they start to show progress in their own ways, can really help.

And interactions with school can be as much about how you are trying to work with them, so somedays they are positive and good results can be seen, but just like every other parent, there are some days when you are going in and calling them to account about how they are failing your DC. The reason why and the actual failure may be different to other parents, but every parent that I know has been into school about a failure of some sort or another by the time they leave primary school - perhaps less frequently, and more easily solveable, but they have still been there.

But I always love DD - no matter whether its a good or bad day.

(There are days I don't like her, or the ASD/ADHD very much - but I always love her).

Yep. Some days they are engaging, thoughtful and funny. Other days I would drop kick them out of the front door for being violent and abusive - not lashing out in a meltdown nasty; deliberately hurtful. I can handle (mostly) the quirks, obsessions and differentness and utter control it has on every aspect of all our lives, but I also despise it. I also hate how bloody hard it is for them.

Then something will happen, like a school party, or a concert, and I see him in sharp relief agains his peers,

Oh yes. Last year's Christmas concert was an unexpected kick in the nuts (he is 3 and I had been somewhat in denial). I must start bracing myself for another nut kicking in three weeks time.

We have 3 DC with ASD 1 has extra DX

It's hard ...it's not what we planned

I am often exhausted before 9am.

I spend at least an hour EVERY day talking my daughter down from anxiety levels, enough she can go to school, all the while her telling me how much she hates me)herself/siblings how she's not worth living... Dealing with the other 2 issues all before 8am all have widley different personalities most of the time clashing.

The constant meetings at schools ed psyche reports, ot reports, salt reports the ongoing nightmare of EHCP. Always being told about lack of services/lack of support/lack of funding for everything.

I feel I am failing all of them in different ways every single day.

Most of the time I just want them to be happy....sometimes I just want to run away, followed by knowing this is my life now chances are strong this is not going to change for years...if ever.

I feel so very very sad for the life I could of had and find it very difficult speaking to parents of nt children or seeing my dc peers just enjoying life everyday.

I love my DC so very very much, but I hate how much of me is being erased in order to cope every day.

Still feel that now and DS is 19 and doing his first term at uni. He is on the phone to me everyday needing some kind of social interpretation on a situation, help with what seems an insurmountable problem or just a chat because he is lonely as he finds it hard to make friends.

It has been particularly bad over the last week and I feel exhausted trying to help him to help himself.

Other times it is better and it recedes slightly and I feel less harried by it all.

Big hugs OP and to everyone else on here with ASD kids.

Last year's Christmas concert was an unexpected kick in the nuts (he is 3 and I had been somewhat in denial). I must start bracing myself for another nut kicking in three weeks time

I had that whole shebang too Tawdry, ds wasn't taking part because "he doesn't understand what's going on". I cried buckets. And his extremely fluent reading in YR was marked down as Working Towards because he couldn't demonstrate understanding, like ajw88's dd. It sucks.

If the me from those years ago had advice for you now, it would be "Don't go. You'll just be punishing yourself". Sometimes even if you know it's coming and you don't get the shock of surprise, it's still a massive kick in vulnerables.

Thank you everyone.
I thought I was the only one.
I thought I was terrible for not being relentlessly positive.
I thought I was the only one to feel crap after school plays or assemblies. To feel horrible reading people on Facebook saying how proud they are of their child because their parents night was so glowing.
Thank you all.

It's definitely not just you OP. I love my ASD dd13 to bits but she's exhausting to parent.

twinkle I feel the same as you. I'm burnt out. It's relentless and I just want to run away.

My lovely ds also has massive mental health problems 😓

Its more of people around them i find very difficult to deal with.
Like school says hes doing ok then constantly sending home additional work because hes behind and hes only in recpetion. Like the fact he only eats his sandwich at dinner as they refuse to open his crisps and banana because he should do it himself and can't and i have gone in ask them to open they do for 2 days then back to not being opened.
Like the Christmas concert last year that i was told he was doing brilliant at to turn uo and find him sat with a teacher at either side of him and behind him while he just sat there.
Like the teacher who told him he backs nappy changing difficult as he needs changing as hes incontinent.
The teacher whi said to me its tough that he hurts in pe as your suppose to hurt even though he hurts due to physical issues.
Yesterday he came home sad when i asked why he said because i wasnt allowed to do what i wanted to do so i asked what did you want to do he responded with i didn't get what she wanted me to do so i wasn't allowed to do what i wanted to do.
Its horrible.

Right there with you ds is 17, had echp meeting yesterday and i ended up in tears. Im worried for the future, it was easier when he was younger (never thought i would say that) wheni could control school, and his enviroment. No one seems to hear you post 16.

My son is approaching 16 but emotionally he’s about 10/11.

Some days it’s fine bit on other days I feel uttel,y overwhelmed by it all. It’s usually when he’s having a bad time and can’t cope. His inability to cope with situations gets taken out verbally on me but I know it’s his way of saying “I can’t cope”. He usually calms down and ends up sobbing and needing a hug from me while he apologises for whatever he has said.

He’s at a special school which is amazing but he is struggling even there.

Am dreading the onset of things like PIP because he definitely needs so much care and support still but it’s not immediately obvious in a half hour face to face interview.

A kick in the nuts is the perfect description of Xmas concerts. I used to go, he would have a horrific meltdown until I came up on stage to get him, then he would sit with me in the audience. Sports day the same. I just sat there feeling all my denial and positive thinking melting, facing up to all his difficulties at once, in public, as the entire school watched. We eventually worked out that if it was dad or grandparents in the audience instead of me, he tolerated it by completely tuning out what was happening, but at least no meltdown.

He’s better now, he can cope with me there, but still tunes it all out. We give him a choice now, if he is struggling, we keep him off school on those days, with the school’s blessing. He more often chooses to go now, but just doesn’t get it at all, which breaks my heart still, but is my problem, not his I suppose.

I know we are lucky really, reading these posts, in that he is mostly fine at home in our own little unit, where we can avoid his triggers. It’s luck that his triggers are the type we can manage. The teenage years ahead scare me though, I can’t bear the idea that the safe space we have at home won’t be enough.

Thank you everyone.
Some days it’s just hard.
DS is placid and oblivious most of the time, he’s not had meltdowns but he is incredibly single minded and can talk about his specialist subject for hours.

I know it must be confusing and lonely for him so I do always try and listen and talk to him about his interest but sometimes it is very wearing.

With him being 10 i find myself being worried about the future and the changes ahead with secondary school and puberty.

Yep- sometimes I try to pretend that she's NT but I'm always reminded at things like a school play or when she's walking home from school with her friends.
As DD2 who is 1 and NT is becoming older and has started wanting to play with DD1 the contrast has started to become even more noticeable

Your children do not exist without autism. Its not a disease. Its who he/she is.

No. Branleuse you are right and I don’t think anyone here would disagree with you.

My son is autistic and so am I.

It’s just hard to watch him struggle and it leaves me feeling overwhelmed at times.

Branleuse, I think we all know that. That’s the point though. I wouldn’t change a thing about him, it is who he is, but sometimes these public events, which are designed for the NT, remind us very harshly that the world is not designed for them, and it’s going to be hard. We can find that painful without blaming the autism.

At the moment it is rarely in the background sadly and even when behaviour wise it is then the “admin” and fighting means it isn’t.

For anyone struggling, or just wanting like minded people, have a look at the goose and carrot thread on the SN chat board, it’s badically a thread to share whatever we need - all welcome!

yeah, this is just weird to read for me. I know its difficult, because it IS a NT world, but theres no point trying to imagine your child without autism. Its like saying I love him so much, but I really wish he had a completely different personality. In which case, what is it you love? The idea? The shell?

All 3 of mine are autistic, and I have also just recently been diagnosed, and even after suspecting it for years, its a really weird feeling actually being in the group that everyone just thinks are heartbreaking, and wishes you were somehow different. Its much more of a headfuck than I thought it would be. That doesnt mean I dont realise that its hard, but it isnt like a virus that comes and goes, and its not some cancerous tumour that is taking over and needs to be got rid of. Its just us. Its time to reassess the fantasies of what people need to be like or what we need to turn children into, and maybe adjust what we expect and accept that what people can and cant cope with can be different to what our parents would have wished for us, but it isnt a case of teaching to make kids enjoy christmas assemblies or work teambuilding exercises or noisy environments. Its more about saying well that wont work for us, and chilling out and finding something more appropriate.

Sorry if im defensive

My son is 13 and was diagnosed 10 years ago so we have got used to our lives being different. Even so things happen that rub in the differences. I'm currently having to delay treatment for a medical condition because we will not have enough support for ds whilst I am having treatment. If he was an NT 13 year old it wouldn't even be a consideration. So some things still get to me.