To have a little cry because I don’t know if my son will ever love independently?

[Purplevioletsherbert]

A bit of self-indulgence before I put on my big girl pants and crack on.

He’s 7, and has autism, ADHD, dyspraxia, FASD, and attachment disorder. Attends an independent special school. Hes super intelligent but just doesn’t have any basic life skills, despite trying everything to teach him.

He’s just developed a new tic (jerking his head sideways) and it’s brought on a mini meltdown from me that he just has so many difficulties and may not ever live independently.

Not that I’ll ever not want him with me, but it makes me sad for the life he could have had. If things were different.

And I know he’s still so young and has so much time ahead to learn skills etc and to an extent he will but he does have very complex needs and it’s entirely likely he won’t ever manage.

Obviously I meant live not love…

No experience or help but that does sound so very hard for you op.

is there stuff that he does that makes him happy? That must be a comfort. I’m sure he’s a wonderful boy. I hope the school is supportive and helping him develop?

I have one who won’t either. It’s incredibly sad and a bit frightening as he and I get older, he’s an adult now.
Its completely understandable to have a cry and a rant, then, as you say, big girl pants and back to it.

YANBU to feel this way. And perhaps you are also mourning the life you thought you would have had if he did not have these additional needs. You may not need or want it now but hopefully you can get some respite care sorted when he is older.

Hug from another Mum here - DS does independently but will never have a life that I can recognise as happy or fulfilled. I have a little cry sometimes too.

I could have written this 10 years ago..! Here I am with a very loving pre teen who is adjusting to his life very well. He had ticks, quirks and was really quite random ☺️ removed him from mainstream school in lockdown and 2 years later he went into private specialist school and I have a changed boy quickly growing into an amazing man. All those ticks have gone, we have the odd random quirky little mannerisms but that's what makes him who he is and I'm super proud of him. Don't give up hope, things switch up so quickly with kids with autism, I remember thinking just like you - it was a sad place and pretty lonely to! You've got this, ride the wave, 5 years from now you'll look back and wonder what all the worry was about. Sending love and hugs your way xx

You are allowed to grieve for the life you thought your child would have. It's perfectly natural. However, as parents what we want most for our children is their happiness. He can be happy. He may never live completely independently, but that doesn't have to mean his quality of life will be poor. Holding down a career type job, owning your own home, getting married, having kids, all the things that we are conditioned to believe equate to "success", do not automatically equate to happiness, as is proven every day on this forum. Focus on getting him into a position where he can achieve happiness, whatever that is for him.

My DS is 16 and has an almost identical diagnosis as your DS (apart from the ADHD and FASD) and is also in a specialist school. You may well be surprised at what he will achieve and how happy he will be! DS is currently starting his GCSEs after flying through his mocks with 9s. He can cook independently, go to the shop, he can carry out household tasks like hoovering and washing. The little boy that we saw at 7 - you would have never thought would be who he is at nearly 17. He is happy and off to college (EHCP has helped with this massively and college have been fantastic). Yes, he absolutely has his struggles. But he has come so, so far and his life is great. Lots of love to you.

My sons are in their 20s now and when they were your son's age, every professional involved with them insisted they would never have any independence and would need to live in group homes as adults.

This is the case for my now 23 year old but his 24 year old brother will lead a semi independent life. He has a car, a degree, is currently doing his masters. His needs are primarily guidance and prompting and knowing what is likely to trigger him. He was in nappies until he was 6, wasn't talking until he was 7. Was violent as fuck until he was able to talk, broke my nose, bit, kicked, spat. We were told we were in denial. He'd never speak, never become continent. Needed a specialist unit, all sorts.

I am no expert at all and all I can say is you don't know how things will turn out. All you can do is your best.

We prepared for them both needing lifelong care and for after we're dead. Everyone is different but it gives me comfort to know we've arranged safety nets for them and know who will be responsible for their care in the future.

The unknown is scary and that's why it's never too early to start planning. Short term medium term and long term.

Giving you a big hug. I remember feeling so sad when DC was little, for the same reason. She’s 31 now, and a couple of years ago she met a young man with a very similar diagnosis. They’re madly in love, and she’s recently moved in with him and his parents.

It’s a situation that I never dreamed would happen, and I’m so happy for them. Don’t ever give up hope. x

I'm in a similar position but ds has a chromosomal deletion leading to 'autistic traits' and cognitive impairment. He's 6 and a lovely sweet boy, gets tonnes of compliments but I'm constantly worrying about his future. He is just starting to talk but it's unlikely he will ever catch up to his peers or be able to read and write to a decent standard. I'm fine with him being with me forever but what about after I die? I don't want to burden my daughter with his care but there's noone else who would be likely to do it.

I've had to stop myself from hoping too much as I spent his first 4 years doing that before getting his diagnosis, deluding myself to protect myself so when it finally came it was catastrophic mentally and needed counselling for a while. That and time did help but it's a year later and I'm worrying all over again as he's going up a year and I'm trying to get him into a special school and there are so few places.

I have to remind myself how lucky I am in other parts of my life, deploy the techniques I learned in CBT, meditation to physically relax the tense parts of myself etc. no further advice, just lots of solidarity.

I've got a 30 year old with autism. He'll never live independently but he's perfectly happy. I've also cried about the life he'll never have. In some ways his condition has been harder on the rest of the family than him

Thanks all. I don’t feel so alone now!

Hes a very happy little boy with a lovely life but then he’s also carrying a lot of trauma and a lot of self loathing. Going through a tough patch at the moment and just burst into tears at bedtime because he hid at school today and they told him they can’t keep him safe if he hides from them and that if they can’t find him they’d have to call the police. I said that after calling the police they would have to call me. He burst into tears because “that would have been horrible, I keep regretting my choices”. He then repeated that last phrase over and over whilst banging his head against the pillow, screaming and crying. It’s so distressing for him.

"I keep regretting my choices" is very insightful for a seven year old. I'm guessing he's been taught it, but to be able to understand and use that phrase is pretty impressive IMO.

You’re allowed to be very sad.

My son is an adult now and will never live independently, although we’ve chosen for him to stay at home for as long as we’re able.

I’d like to think of any positives, compared to his brothers, he’ll never have to worry about finding a job or paying a mortgage or even the heartache of splitting up with a girlfriend. We think of him like Peter Pan, the little boy who’ll never grow up but is happy in his own little world.

Sometimes we want a crystal ball to see into the future, but you can’t know where your son will be as an adult. As others have said, he could thrive in the right environment.

@ThreePointOneFourOneFiveNine what a lovely response

No advice but just be kind to yourself. Your feelings and sadness are valid. You have been dealt a shit hand in the card game of parenting, and no, it's not fair, and no, you don't deserve it. Repeat that to yourself.
All the best OP.

He’s actually incredibly emotionally intelligent! He goes to an amazing school that has been life changing for him and their key focus is on improving their mental health. He was doing really well with strategies to support himself to regulate etc, it’s gone a bit downhill since Easter but I’m confident he will find them again.

It’s very much the practical side that concerns me. I can’t ever see his executive functioning being enough to live independently at all.

If I could choose a life for him it would be caring for animals on a small farm (maybe a farm school). It would make him incredibly happy.

Thank you. I needed to read this today. My child will never live independently either and it's been a tough road to get to acceptance of that. I have so much fear for his adult future but I know that he is happy now and I will do everything in my power to continue that as long as I am able and to make provision for when I am not.

At 8 my DC was pushing me down stairs and coming at me with scissors. They were always severely dyslexic and even now I believe there is some part of autistic spectrum. My ex had left (affair) when they were 6 but insisted on contact and contact with the OW. OW was abusive from what I can gather. My ex then continued trying to gain more control and by Yr5 my child had been forced by family court to go to a specialist school. Long story - none of it great - but adult DC is now on a college course and doing great. Still spends time equally between me and ex (as ex will kick off). They are developing skills (forced by me) to ensure they can live independently - cooking, budgeting, finance. We are not there yet. But they are doing very well at college and their part time job is going well.

I am of course in touch with parents of other SEN children - many much more academic than my DC - but their restrictions seems to mean they cant live independently or contribute. My DC is perfectly capable of hoovering, dusting, weeding, hedge trimming, car cleaning. So why? Is it because I am an absolutely fucking bitch who insists that incapable teenagers do stuff? Or am I just a parent who has boundaries and is clear on what they are? I am a single parent and only have 1 DC - that perhaps makes a difference.

Sounds like you’ve done a great job teaching your son the skills he needs. Unfortunately for my son it isn’t that he is not capable of performing the tasks - he absolutely is. He just doesn’t have anything near the level of executive functioning skills he needs.

For example, he is physically capable of running himself a bath and getting himself clean. He will get in the bath fully dressed. He is physically capable of making himself a glass of water. He won’t know when to turn the tap off or angle the glass in a way that the water doesn’t go everywhere. He can get himself dressed in the morning - he can’t organise himself to be able to put clothes on in the right order so will forget his pants, or put his school jumper on without his shirt.

Sure these are all a work in progress and we may get there eventually but it is the same for every task he performs. And if he ever does live independently, he will need to remember to take his adhd medication every morning to even stand a chance.

You are absolutely allowed to feel sad and grieve the life you thought your son was going to have. Have you read the poem Welcome to Holland? I hope you won't mind me sharing it with you, if not. It resonated with me when I had my daughter who has Down's Syndrome. I had all the same feelings as you, but as PP have said, our children's happiness is a wonderful goal to have, and I never thought I'd be writing this, but my daughter now lives with 2 of her best friends, semi-independently, 3 hours away from me, working part time and still learning life skills, and she is supremely happy. So much so that when I suggest she comes home for a weekend, she tells me she is too busy 'having fun'! No, it's not what I'd set out to expect for my only daughter, but she feels genuinely fulfilled and that's really what matters.
Welcome to Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.