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Original poster

ASD son - when will my heart stop breaking?

53 replies

confusedofengland · 26/07/2022 22:00

Ds2 is 11 & has autism & ADHD. Possibly other stuff going on to - motor skills difficulties etc. He starts senior school in September, we are trying mainstream.

He is an amazing kid & tries so hard at everything, harder than DS1 & 3 put together! But everything is so much harder for him & it breaks my heart.

Friendships are hard. School is hard. Sport is very hard. Staying calm & not having meltdowns is hard. Concentrating is super hard.

He is currently on an active Scout camp for 5 nights. They have sent photos & he is loving it. But tonight the leader messaged me to tell me he needed rescuing from 3 activities, high ropes & zip wire. And that the other Scouts have been tolerant & supportive of him. His behaviour has been good. Although this was sent with the best of intentions & the Scout leader is amazing, this really broke my heart. I wish for DS that he could just be normal, unremarkable.

Is that bad? DH says I should see it as positive & that I look for negatives. I just wish DS didn't struggle so though. I'm worried about senior school, but equally I know he has to have a chance.

Others with DC like my DS - does it get easier? This is so hard.

OP posts:

oakleaffy · 23/09/2022 21:57

StillMedusa · 26/07/2022 23:31

My DS2 has Autism, and went to Special school.. no GCSEs or anything as he has mild/moderate learning difficulties. He's 25, still lives with us ..he'd like to live with his (one!) friend one day who has CP and would also need a fair bit of support.
He can't drive, will never marry or be a dad, and he was never going to go to university and yes I had to shave him today as he can't do that very well, he can't make himself a simple meal and I'd never leave him alone overnight in case the house burned down around him (he wouldn't notice!)

But... he has a job..a full time job (thanks to Mencap) at our local Asda, where he is probably their best, most reliable and accurate employee :) Everyone knows and loves him, he remembers everyones names, pets, kids and the social interaction is just enough for him. He meets his friend every other week to go to the cinema, and then they go for a meal.. his friend has severe cerebral palsy..he cuts up his friends meal for him and helps him get to the loo, his friend is funny and has more commons sense.. they truly love each other.

There are times still when it HURTS. That's always going to be the case, but oddly as the milestones (no driving test, no GCSE or A levels results, no graduation bla bla) pass, acceptance becomes easier. He is who he is.. an awesome young man who has beaten the disability odds (for a a not 'high functioning' autistic man) to have a job. He has more savings than I ever will, he has a function in life. He is now a doting uncle to his baby nephew who doesn't care that he's different... his life is different.. but good.

Sorry that was long, but what I think I'm trying to say is.. it's ok to feel sad, scared, worried... but things change, time passes and it tends to be ok in the end...whatever the 'end' happens to be :)

(I just have to live forever so he's ok....)

Sounds a lovely Son.

mynameisnotmichaelcaine · 23/09/2022 22:03

Oh OP. I've been where you are. DS sobbed and melted down throughout cub camp. School was stressful and difficult.

This summer he voluntarily went on NCS with a group of total strangers and enjoyed it. He got 6 grade 9s at GCSE - his lowest grade was a 7. If you had told me this when he was 8, I would absolutely not have believed it. For him, top juniors and lower secondary was absolutely his hardest time. There's just so much they have to navigate at that age.

Hang in there. Solidarity sister.

SparkyBlue · 25/09/2022 10:39

OP thank you so much for that lovely update. It's a great boost to the rest of us. DS is seven and is so funny and happy. No friends but he is so quirky (current obsession WW2) that he finds it difficult to find common interests with other seven year olds. He is currently in an asd class in a mainstream school. Just from reading here I'm not sure of similar exist in England so he only has five others in his class but he goes into the mainstream class for things like PE and music and crafts but all academic stuff right now is done in the smaller class so it's working great for him

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