AIBU for how i feel about my sons autism.

[saffkey1]

My DS is 5 and is severely autistic.I have two younger children with my DH.AIBU to not,as everyone else suggests i should,be really ott positive about my child being autistic .I have tried,but I find alot of people say shitty things like ‘i wouldnt change a thing’ when i really would.I love my son dearly and i will support him until i die but if i could give him a tablet i would.I just worry so much about him,about his life being hard.I also get incredibly jealous of those with ‘normal’ 5 year olds who complain about them.Im not sure whether im being awful for feeling this way.

Yanbu at all. A good friend of mine has a daughter with aspergers around the same age as my ds(5), and the older they get the more the differences between them show. (and the more I suspect that I might have it too, she is exactly the same as I was at her age and ds is quite different).

She IS a lovely child, but life for her is more difficult than it is for my nt son or her nt sister, and I don't envy that.

We all want our children to have easy happy lives and it's 100% ok to be upset about anything that might make that more difficult.

Bloody hell, I wasn't happy when it was confirmed that ds needed glasses as it will make his life harder and that's a non starter compared to an autism diagnosis.

Nope you're so not BU. I'd love to be all "ah wouldn't change her the world" but I'd be lying. My 7 year old non verbal, severely developmentally delayed DD breaks my heart on a daily basis. Last night (NYE), I cried myself to sleep at 9pm as she wouldn't stop screaming and I couldn't look upon a new year with hope. Just more of the same. No, worse. I'd change it without a second thought right now. And make her life, her siblings lives and mine and DHs lives so much easier. 😢 It's the people that pretend to get it and understand like my Fil. "Oh she'll be fine" "you do so well" "we must come round and help at some point" then you don't see them for 6 months.

They won't even give my DD a disgnosis. She hasn't displayed enough severity of traits. Yes, she is reading like an 8 year old at almost 4 (understands comprehension too), she can do hard sums and stuff. But socially and emotionally she's like 2. She was non verbal until she was almost 3 but I don't understand how we got here. Her language is still repetetive abnd cannot tell me her emotions and experiences but peadiatrics/nursery/senco all ignore that. Also, she is so fucking loud. Flapping, hands over ears and toe walking look less cute by the day. Telling us to please be quiet and stop talking when she has sensory overload is heartbreaking too.

Luckily SALT know that there is something and will take it back to panel at easter.
I can only wait until she goes to school in september. I envisage I will be pulled in within the first month.

To what the future holds I don't know. Anxiety I assume and probably like me. I say and do the 'wrong thing' all the time. Why can't I ask for given away clothes back now that we have booked a holiday and some might still fit DD? All hell on here cos my mum said I was awful. Again. DH has explained it might look antagonistic and insensitive but I can't see how the person I gave the clothes to would be hurt.

My son is non verbal and has severe dyspraxia. I found christmas heartbreaking, he just couldn't cope with meeting up with relatives who just don't understand his condition, he just shut off and looked so sad as he couldn't relax and be himself. Trying to explain it to them (for the millionth time) left me constantly close to tears and their replies were just so frustrating. They just don't believe dyspraxia is a 'real thing' and 'why do they have to give everything a name these days, he's just a bit slow'.

I love my son more than anything. I hate the ignorance of these people. I love the person that he is and am the proudest mum ever but if I could I would actually give up limbs if it meant he didn't have these difficulties

YANBU!!!! I am an Aspie and so is my husband. I am extremely happy now, but there was a time where I was depressed and suicidal. My Dad who was my best friend (and I also think was high functioning was my best friend until he died. I know he worried so much about me, and even my mother , who I'm not close to, worried about me too. What I'm trying to say, is that you are a very good mother and you are doing the best that you can. Worry shows you care. But please don't give up hope! Just because he's autistic, doesn't mean he can't have a happy and meaningful life. We're just late bloomers!

If it helps. I have a daughter that had heart disease. No cure etc. She had a transplant and is somewhat well. Has delays, food aversion, feeding tube etc. Will be looking out for any problems as she gets older, autism being one of the things to look for. I love my daughter and I understand who she is is somewhat defined by her condition and all she has gone through, but I would give anything to just have a ‘normal’ child. For her sake and admittedly mine. I still struggle years later, my mental health is fucked. I have so many diagnosis’s now and I find it hard that this is basically our life now, this is it forever. I’m scared to have another child later on in SSE they have the same condition, if that’s the case I won’t even go down the transplant route but then I’d be giving one a chance and not the other? I can cause myself a break down if I think about it all too much. I’m not even embarrassed to say this anymore but I hate my child’s condition, I hate what it’s done to her and us, I hate that I struggle so much as does she, I hate it all. What I hate the most is not feeling like me anymore, I’ve had a few breakdowns and crazy moments and times where I can’t even get out of bed, all due to my daughter being born the way she has. Makes me feel like I crap mother but I can’t stress how much I love her, I’d take a bullet for her but I just cannot get past my hatred of her condition. I’m so proud of her and realise how fucking lucky we are with how well she is but I worry I won’t ever accept what we have all gone through, it will always eat away at me.

Incase not SSE.

I think there are aspects of autism that can be incredibly positive but there are also many aspects that make life incredibly difficult for the autistic person and those who care for them. It's not unreasonable for you to openly acknowledge that.

Today I had to half drag (not literally), half carry 5 year old DS home whilst getting kicked, hit and bit because he couldn't do his zip so he had a meltdown. No fucks given about the looks from other parents, although I'm pretty sure he nearly dislocated his own arm

I have at times felt the same way. My d's is 13. If it makes any sense I think you kind of mourn the child that you could have had. I did for a long time, coupled with exhaustion, and sever stress that comes with parenting a child with special needs. Be kind to yourself your doing the very best you can for your child it's not an easy journey and can be a very lonely one too.

@Idlikeabunchofbananasplease thats exactly it,its like a grief,a mourning together with worry,exhaustion,disbelief ,learning curves.

Yanbu OP
Oh how I also wish disability education was a thing taught in schools. Would make mine & DS’s life much more bearable.
One reoccurring theme in DS’s autism is developmental regression. It’s heartbreaking to watch.
He was hitting all his milestones (talking etc) up until 13/14 months and then he got ill for the longest time & it all disappeared & he became completely mute which lasted until he was nearly 3. I can’t begin to describe how helpless I felt at this time. He’s now 7 and talks but is still behind, my heart breaks watching him struggle.

MonsterTequila agreed the ignorance and fear of someone with autism is still a very big issue. As education for kids with autism. I have a friend who's son has been out of education for about a year because he's not coping in mainstream, but doesn't meet the criteria for special school. There doesn't seem a lot of awareness of how teachers can teach kids in a different way or the autism kids don't get TAs when they need it, or they are deemed now coping and the TA is taken away from them. It seems crazy to me, the one style of teaching to fit all doesn't fit anything. I know they have to teach a large number of kids and this is an issue. Anyway I digress sorry

Also Monster big hugs

I feel the same.

I have so much respect for all you parents out there who have children with autism. I'm a childminder and have just started looking after a 3yr old who I've just referred. He is having to do shorter days as he just cant cope with a full day yet.
He has come on so much though in 2 weeks. I'm so proud of him. It is so hard though and that is just after 4 or 6 hours care! I cant imagine how difficult it is for his parents. But when he snuggles to me on the sofa and manages to say a word and I can understand him it melts my heart.

Haven’t rtft.

Yanbu

My 10 year olds autism is mild, he is getting easier to deal with in some respects as we give him strategies to deal with his difficulties.

I also may have asd myself.

I’d get rid of it in a heartbeat, especially thinking back to how his behaviour was as a toddler and small child.

For many years I operated at the end of my rope and I could
Easily be in a box in the ground.

This thread is from 2018

Oh thank God, I’ve found my people!
The ‘autistic voice’ saying that autism is not a disability is loud. But it’s simplistic.

I have autism. Yes, there are some strengths in the way my mind works but would I change it? Hell, yes. Would I change it for my child who is also ‘high functioning’? Abso-fucking-lutely. And if he was profoundly disabled then even more so I imagine.

Autism is a disability. To say otherwise belittles the struggles autistic people face. Why would I not want to find life more straightforward? Or want that for my child?

This thread is from 2018

Does it matter? Do you think that in that time people haven’t had these feelings or thoughts?

@mulledwineinajug
I hear you loud and clear. I'm glad you said it as I would feel guilty feeling like so. It's not that I don't accept my son as he is, it's all the difficulties that come with it.

I had a patient with an autistic son in mainstream school and relatively mild disabilities that felt like very positively about her son's autism. She also thought all other parents should feel this way and wanted me to help her start a parents group attached to the GP where she would lecture them about how they should feel. She just didn't understand that it really was easy for her to feel this way because her son wasn't pre-verbal, incontinent, in need of full time TA support in school or achieving below average attainment. He had friends, hobbies and could engage in the vast majority of typical family life. She was so annoying.

"This thread is from 2018

Does it matter? Do you think that in that time people haven’t had these feelings or thoughts?"

Well it could be just me, but I think the likelihood of the op coming back is very low.

Thank you gruffado . One of the things I struggle with is the autistic community saying ‘without autism you wouldn’t be you’ and insisting on ‘autistic people’ rather than ‘people with autism’. I would hate to think that my autism is all there is to me.

My child is funny, clever, determined, enthusiastic, tries so so hard... without autism he would still be him. He just wouldn’t get overwhelmed, try to hurt himself, lash out, have continence issues, melt down with anxiety because he doesn’t understand a social rule.... he would still be him. I just want his life to be easy and happy. I don’t want him to have the struggles I’ve had.

You can accept and love your son wholeheartedly whilst still wishing his life could be less challenging and even that yours could too.

Doesn’t matter whether the op comes back tabbymumz - what we have to say will still be here for anyone who might feel alone or feel guilty for not being delighted with autism as a gift or ‘superpower’.