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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:
KathieFerrars · 26/07/2022 22:12

It is very hard. I have been there and most certainly have this tee shirt. School is rocky. Life was so much better once school was done. I'm afraid the feeling doesn't go but there are more beacons of hope. Mine drives, works full time and now has partly bought his own flat. Yes, he still needs support with stuff (paperwork) and I don't think he will have a relationship but he is great and your son is too.

stillvicarinatutu · 26/07/2022 22:20

I want to tell you about my son . I spent all his childhood years worrying, fighting the system, fighting for him.

He's 30 now .

He went to live in China at 23. Married his Chinese gf. Made a living doing what he does best and in his area of expertise.

He's now travelling around south east Asia and absolutely living the best life possible.

He scares me to death - he's riding motorbikes and he could even bloody ride a push bike at 16 but - he's an adult and I've let him go .

If there is just one thing I could say it would be they find their place in the world and all the worrying actually does nothing .

X

stillvicarinatutu · 26/07/2022 22:22

Oh and school was awful - it got better at the end because the mother kids are more mature .

College was ok

Uni - he found his people .

My advise ? Do what you can for them but stop
Worrying.

Interested in this thread?

Then you might like threads about these subjects:

Families SEN
stillvicarinatutu · 26/07/2022 22:22

*older kids

Ntsure · 26/07/2022 22:26

Are you dead set on mainstream secondary school?
theres some special schools that do cater to academically able children. We've decided on specialist secondary for exactly this reason, children shouldn't have to struggle on a daily basis, they should be given the chance to thrive.

Ironoaks · 26/07/2022 22:38

DS has ASD and ADHD (also hypermobility and coordination difficulties).

Primary school was very challenging for him (in terms of behaviour and social skills) and I remember being extremely worried about how he would cope at secondary school.

Things got gradually better for him during his teens. He made some good friends and learned ways of coping with his difficulties.

He has just finished his second year at university, is excelling academically, has gained confidence and is trying new things all the time (attending a May Ball, volunteering for a summer outreach roadshow for children).

Original poster
confusedofengland · 26/07/2022 23:09

It's sad but also reassuring to hear others have felt the same. I like the success stories. Well done to your DC for those. I guess maybe the lows are lower & harder, but the highs are higher as they are so hard-won.

I think at this stage we have to at least try mainstream. The special schools near us are not in the least academic & DS is somewhat (he's within a year or so of age-expected standards in most subjects, at standard in some). There are senior schools with units but 1 hour away & we also have to consider getting the others to school, he does not qualify for LEA transport. Tbf, his senior school seems excellent so far & is an international school so caters for those with weak English & also embraces 'different' children. So we will try it & hope he wows them!

OP posts:
LargeLegoHaul · 26/07/2022 23:13

he does not qualify for LEA transport.

If the SS was to be named in his EHCP the LA should provide transport. If you were to be refused e.g. because the LA try to say it is parental preference you can challenge this and SENTAS can help.

Original poster
confusedofengland · 26/07/2022 23:20

We were told that our nearest school can meet his needs, and he can walk to that one. Therefore, any other we choose to name, we must get him to. We didn't choose nearest school as it has been in & out of special measures for as long as I can remember & I can't have him being the Guinea pig for that.

OP posts:
LargeLegoHaul · 26/07/2022 23:30

If you contact SENTAS they can help you challenge the transport refusal.

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....)

Jovanka · 26/07/2022 23:38

It sounds really hard OP.

But how amazing is your son for getting up there and giving all those activities a go even though it’s really challenging. Even being away and being with all those people is probably asking so much more of him than NT kids on the camp.

He sounds amazing.

But I totally get why it’s hard for you to witness how much more difficult life is for him.

Onceuponatimethen · 26/07/2022 23:49

Op I don’t have any answers as I’m in exactly the same position. But I can send you solidarity as I know how it feels Flowers

Mariposista · 26/07/2022 23:56

Look at the positives here - he is enjoying his camp, behaving well (probably better than some of the other children), and has friends. He is trying hard at school (more than most of his class probably). There is no reason why he can't have a full and enjoyable life, find a job he loves and that he is good at, have his own family (if he wants to) and enjoy hobbies.

entropynow · 26/07/2022 23:59

@stillvicarinatutu

Still waiting for mine to find any place in the world. He's 31.
Sorry OP but in my case the answer is 'never' and that's the fact
For every step forward there's another back ime.

Gilead · 27/07/2022 00:00

Ds at school, played rugger and hockey, straight A student right through to his masters. Came out of school with one friend. Came out of uni with three friends. Can’t find his way round his home town. Makes a buck carving. Lovely gf and happy.

Arenanewbie · 27/07/2022 00:16

it does and it doesn’t get easier in a way. My DD has additional needs, she is a bit older. I feel absolutely exhausted.
You’ve got his siblings to compare with but the easier way is to look how happy is your son in his life, I know it’s difficult to achieve sometimes ( most of the time actually)
And I know what you are talking about with this email, it’s so bloody hard that everything is so difficult, every little things is a reminder that they are different, and as a parent you can never relax .

@StillMedusa it’s such an amazing post, very inspiring, thank you.

mrsfollowill · 27/07/2022 00:17

He's very young still so do not write him off. Our DS is autistic but was academic - into Chemistry/Physics/Maths but zero social skills- look for the positives.

DS struggled through Senior school/6th form but came out with 3 A levels thanks to the most supportive head of 6th form who looked after him. Went to a SEN college for 2 years (suggested by that wonderful teacher!) If you are in 'The North' PM me for details.

Upshot is I have a confident and happy 20 yo old now in a full time job- lab work which is his ideal - must admit I have despaired at times but I wave him off to work now every morning knowing he is living his best life. I get it- it's hard but kids get through it- it's finding the right path for him and it took 19 yrs to get there for us.

mrsfollowill · 27/07/2022 00:33

Will just add the academics didn't really matter in him getting the job - it's min wage but he is settled, happy and they all 'get him' - met some of his co workers and they are a quirky bunch but have taken him under their wing- he is 'mothered' to death by some lovely ladies and the boss is a legend! He's lucky I know but I wanted to give a positive story- it can work out I promise.

longcoffeebreak · 27/07/2022 00:48

@confusedofengland and @StillMedusa ❤️

My son is 15 and the loveliest loveliest person. I am terrified of leaving him as he is so vulnerable I can't imagine what his life would be like without me to look out for him and care for him.

CatwomanlovesJoker · 27/07/2022 01:00

From one ASD mum to another I don't think from his needs you are describing main stream is a good idea. A school for children on the spectrum is best. I dig my heels in and stuck with mainstream for a while, it just didn't work for us in the end and was very upsetting. A school with teachers and staff trained for additional needs really would be better and he'll be with others in the same situation which really will help him adjust,learn and be happy.

Defeatedbylife · 27/07/2022 02:05

My son has severe autism and learning disabilities, will never do anything independently, still in nappies at 12 and unlikely to ever be out of them,still needs reminding to eat and guided to do anything, mentally hes only 1 years old.my heart will never stop breaking, ive gone from a confident sassy strong woman to a broken depressed defeated one.hugs to all you mums of these special people.

Defeatedbylife · 27/07/2022 02:08

Have no idea why all my posts come up as green as if im op,im not!

Aintnosupermum · 27/07/2022 05:11

I have no idea what the future holds for my children. Eldest is 11 and middle is 9. I have realized inclusion doesn’t work. It’s a lie to enable schools to save money. Mainstream settings work for mainstream kids. Our kids are not mainstream.

I am giving our daughter one shot at the private school and if it doesn’t work I’m homeschooling her. There isn’t much difference in cost. My son is great once you have him on track.

sports wise set them up for individual spots. Mine do swimming and martial arts. My daughter also does dance too. They do it, they don’t excel in it, which is absolutely fine. The fact they take part is a huge accomplishment for them.

Oblomov22 · 27/07/2022 06:48

I get it. Ds1 is an unusual child, hard work. People are intolerant. I am. S child having regular meltdowns in class, constantly requiring teacher attention would get on the nerves of the other children possibly? Is he still being seen by Paed? Are you happy with his ADHD medication? My closest friends ds's both have both ASD and ADHD and she says that whatever medication they've tried (and they've tried most) it wears off, and never covers the whole school day. Many of them she says it's like her ds2 is in a fog, not being his true self, which she hates. It's hard.

Is he going to the new school with all his peer group? Have you spoken to the Senco - what special measures are they going to put into place to help him, support him etc?