ASD son - when will my heart stop breaking?

[confusedofengland]

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.

Some more really lovely posts, thank you. We've got some great people there.

DS is the happiest child I know. He always has the biggest grin on his face. Everybody loves him, adults & children alike (although he doesn't have friends, but I think that's because he doesn't want any). His meltdowns are tough, but they are not frequent- once a week or so - and only ever at home, so they don't get on any nerves. He had a 1-to-1 at primary. For seniors he will have a TA in most lessons, who is there for the whole class. It might work or it might not, we have to try. He won't be with most of his peer group, which in some ways is good & some bad.

It sounds like it will never get easier & I will always hold an extra-special place in my heart for him. But he will be ok & he will always be unapologetically himself.

I am just sending you a big big hug.

My DS1 is nearly 13 and sounds identical to your child. Except that he would never ever participate in a scout camp of any sort!

My heart just breaks all over again almost every day. Sometimes it blindsides you.

Meant to also say, his ADHD medication is great & really helps him, we can tell when he hasn't had it.

@confusedofengland

Of course not having kids I do not know what it is like but please take it as a positive that he enjoyed camp and the other kids were being supportive.

It is definitely positive that he enjoyed camp & how much he takes from life in general. I think what is hard- for me- is the idea that people need to be 'tolerant' or 'supportive' of him. People always are, he is so lovable, such a character, funny & gentle. But I would love with all my heart for him just to be one of them. But maybe I'm projecting, like I say, he has never said anything of the sort it's how I feel.

Its brilliant your son has coped with Scout camp and enjoyed it.

Mine has same diagnoses. For him secondary has been so much better. School are excellent at supporting him and there are others like him so he finally has a peer group (he is in mainstream but is part of a specialist resource provision). The regular brain breaks going between classes seem to help as does the more rigid timetable ie at x time on y day he has always maths - if the teacher is off, it is still maths in the same classroom unlike primary where lessons often changed at last minute. He will always have his challenges but he is who he is.

This thread gave me hope the other day that he will get to wherever he needs to be. It may look different to what we had planned but if it works for him and he is happy that is what matters.
www.mumsnet.com/talk/am_i_being_unreasonable/4593943-can-i-ask-about-your-adult-autistic-kids?page=1

I get what you mean about being broken hearted that people 'need' to be supportive and tolerant of him. But people, including him, also need to be supportive and tolerant of them too sometimes, no one is living a perfect life, whatever that even means!

What I think the scout master was really telling you was how popular and loved he is by all those around him just for being himself.

These kids are so bloody special. My daughter would never ever have gone on an adventure holiday, with the dyspraxia that can come with ASD it was absolutely terrifying for her to go to any sort of height at all; and I, and she, are just so impressed that he even ventured up to attempt the zip wire! It isn't failure to be unable to overcome your fear, it is incredibly brave and admirable to even try, and it is a good lesson for the other kids to see that in action.

I get the worry, sadly it comes with the job, but your husband is right, try to celebrate the positives. Worrying will not make the slightest difference in outcome to him but will have a negative impact on you. He sounds amazing, but perhaps try to get him into a school where they are more equipped and he won't need to waste time with encounters with anyone who lacks understanding of his condition. There is more and more awareness of these conditions nowadays - such a good thing.

You sound like a lovely mum but just let yourself trust in who he his, he will get through and it sounds to me like he will find his place in the world and thrive. I wouldn't change a thing about my amazing daughter although if I could ease her constant anxiety I would do that for her sake. These are the kids that show you what love is on a level you don't even come near with the (comparably more) NT others ! (In my experience, and I love them all a LOT)

DD was diagnosed with ASD and ADHD the day before her 14th birthday. Generalised Anxiety Disorder was added later. Her mental health was already poor and after the diagnoses, she had a huge mental health crisis involving being admitted to adolescent psychiatric units 4 times. The admissions add up to a year and she took her GCSES in hospital school. Age 17, she began to come to terms with the diagnoses. We had successfully applied for an EHCP and the funding was raised, allowing her to attend a small independent sixth form and she also got a part time job. She is 21 now, at uni, planning a year abroad and has a good group of friends. She is and always will be a little quirky and unique but that isn’t holding her back at all! I will always worry about her more than my other DC and I don’t think that will ever change.

He's back from camp! Had a wonderful time, is thoroughly exhausted (in a good way) & actually just spent an hour reading a book - he never reads!

Seeing him makes me feel better. I will never change who he is, nor do I want to. I will always try to protect him & worry about him when he's not with me, though.

He sounds like he's got a great mum so give yourself a pat on the back

I cried myself to sleep so often during primary years. All the problems you describe. Couldn't ever see him living a normal life.

Secondary was a different challenge, but it got better as the kids got older.

He met his wife at uni, is happy with 2 children of his own now, with a demanding career in which he can indulge his obsession.

Hang in there OP. And have a hug.

@confusedofengland - good to hear that it was a positive experience for him

I just wanted to give an update on this thread, as I am having a bit of time pondering DS.

He has been at senior school for 3 weeks now. He absolutely loves it! Comes out beaming every day. He actually has friends, too. At least one wants to be his friend for who he is, not because she feels she should. Ironically, she is also autistic. She is a selective mute, in addition and everybody agrees that they are good for each other. He helps her talk, she helps him remember & find his way round. They are inseparable 😍 He also talks about oth

Oops, pressed send too soon!

Also talks about other kids & got really excited when some sought him out to eat lunch with the other day. Ds1's friends

No advice OP but your not alone.

we decided on an ASN mainstream for dd(11) and I’m not sure we’ve made the right choice. It’s soup destroying seeing kids her age out doing normal things when she can’t. We picked this one for several reasons, safety and smaller class sizes being the main ones.

it’s horrible though isn’t it. It’s terrifying and soul destroying thinking of the possible future they might be able to have or not have. Have you ever read the poem ‘welcome to holland’? It always helps me when days are tough. 💐

Fantastic news OP. Glad he’s having a great time and found a friend

Lovely update OP.
Hope DS continues to enjoy secondary school and his new friends 💐

My dd is nearly 5 and has ASD. I just wanted to say your update has made my evening.

Also I just read your OP and it struck me as how resilient your DS to keep trying these things even though he finds them hard. That’s a fantastic personal quality and shows he has grit, which isn’t something most people have, Neurodiverse or not.

He sounds like a great lad.

Friends in Year 9 think he's a legend & teachers tell me he's adorable 😊

He is doing well at school. Producing good work in all lessons, good behaviour etc. The only thing is that he has had some minor blips in organisation - lost PE kit worth over £100 after 1 lesson, forgot to hand in Maths homework, couldn't remember logins for his multiple school online platforms. I have emailed his tutor about these & he is helping, just hope I don't seem overbearing!

The SENCO is brilliant and said she won't let him get into trouble for anything that he can't help, but equally she does expect him to try his best to stick to the rules. I expect that too & he does.

So overall really happy so far. Having heard about how hard some of his NT primary classmates are finding it to settle, I would say he is doing amazingly 🤩

Sorry for the split posts 🙈🤣

Mine is 21, he coped at school until sixth form where he burnt out and we feared for his life for 18 months, he was so low. Having come from such a situation we are accepting that he is happy albeit now working or studying. He sees his friend once or twice a week. He has been accepted by adult social care for support from carers who work with him on lifeskills. There's no rush, I just want him ok. He's academically able but completely unfit for modern life.
Back in the day he'd have been a monk or hermit.

I once said to my eldest son "I wish your brother didn't have ASD"

His reply? " he wouldn't be him then would he? Don't wish him away"

That helped. It's so true. It's an integral part of my son.

I've asd, adhd and eds. I wasn't diagnosed with any of this until I was an adult. School was always hell for me. I'm now mid 30s , have a stable home , a dc, a partner and I get married in 2 months time. Is like always easy? No it's not but its far easier now than it ever was.

Hi,
Solidarity. I have a ds with dual diagnosis too. He has just started college having achieved good GCSEs at a mainstream school with EHCP. He had challenges, needed lots of support organisation support at home, managed a couple of friends only, but he was happy there and achieved well. So proud of him starting a new college and managing well so far.
There will be plenty of challenges ahead, and frustrations, but feeling a lot more positive than I was 5 years ago 😊

That’s great news OP. I’m so pleased for you and your son. 👍

What a great update @confusedofengland so happy for him and you! It's brilliant he has made a good friend and they help each other out. Hang on in there.