feeling guilty about DC and SEN

[2025bbj]

DS is awaiting a diagnosis for ASD and I am just feeling really guilty that it's my fault. My side of the family has diagnosed and undiagnosed ASD (including myself) and it just makes me feel guilty that I am somehow responsible for DS being the way he is. DH is totally NT and thinks am being ridiculous and that it has nothing to do with it. But I cant help but feel like that. We obviously love him and he's great but our life and his life are obviously harder than if he was NT.

I also feel guilty because when I look at my parents, I have to admit that I find them really hard work and have been LC with them for ages. I don't think it's their fault but they both have (un)diagnosed ASD and are just difficult to be around - incredibly rigid, opinionated and I guess somewhat dispassionate especially when I need any kind of support. As a result, both DH and I dont have much support and are feeling a bit stuck in a vortex of a child with ASD and wider family with ASD.

I know that people with ASD can have ok lives - but right now I just feel overwhelmed with the spectre of ASD and the guilt of it all. Not sure how to reach both acceptance but also a successful pathway out of this.

Both my husband and I are neurodiverse and we have an autistic son, 7, who also has GDD and a moderate learning disability. He goes to a special school and we have many things in place to keep him safe and happy.

I could easily go down the path you are trading right now, but really, what would be the point? He's here. I love him. He is exactly who he has always been meant to be. I couldn't change him, and even if I could, I wouldn't. And I genuinely mean that, I don't know who my son would be without his SEN. He wouldn't be my child, I know that.

Nobody ever gets the family they imagine themselves having, not you or me or anyone else on here. We all have to work with what we are given.

Btw, nobody in our family just has an 'ok life'. We have pretty awesome lives!

Pp post is great.

I feel similarly op. But i dont know where the genes come from.
Both sets of GP are incredibly difficult. So stubborn. Theres ADHD on one side and maybe 1 or 2 asd on the other.
My dc have been very difficult since birth - no sleeping for up to 3 years. Impulsive, arguing etc.
And i guess i do fimd it frustrating and think i should have considered this before having children with dp as we are the only 2 relatively easy going ones. I think it's making me feel deptessed as we have had issues with dc1 at school since she started. And now friendship issues and worries over secondary.
Even dsis and dsil are very different but equally difficult.

Plus then theres the blame that it's parent's fault.
Maybe at least in the next generation couples will know more often a diagnosis so it's not such a surprise when having kids. As frequently in other parents the kid has been diagnosed but as op says the parents arent (but you can see they are similar). My first friends to have dc had an autistic child but it was clear (now it is clearer he is autistic but not then) there was something.
I think too i had imagined that nurture mattered more.
It will be good when more genes are identified as quicker identification of asd/adhd when kids are younger would help a lot and maybe with more information people might make different choices for them about second kids. We know how hard dc1 was when we went for ivf for dc2 (she was playing up in the clinic appts) but i had thought she would grow out of it. Also because having 2 difficult kids is really hard to balance they constantly set each other off. The teacher tried to talk to me the other day. He said can your kids go off and play. Hmm im like no as he fell over (just mud no injury) and wont let go. The other one was just being awkward and probably wouldnt go without sibling. I dont like arguments it's stressful so a kid who is pda is very hard

Thank you. I probably needed to hear that. Today has just been quite overwhelming for various reasons but I dont feel like anyone understands. My family dismiss and belittle how hard DH and I are finding it at the moment and my friends just joke that DS and I are totally fine and what is there to worry about. However, things are only getting harder with DS and sometime it gets to me. I really try my best for him especially as I do 'get' it so to speak, but it feels like a very long road ahead of us.

@2025bbj

Thank you. I probably needed to hear that. Today has just been quite overwhelming for various reasons but I dont feel like anyone understands. My family dismiss and belittle how hard DH and I are finding it at the moment and my friends just joke that DS and I are totally fine and what is there to worry about. However, things are only getting harder with DS and sometime it gets to me. I really try my best for him especially as I do 'get' it so to speak, but it feels like a very long road ahead of us.

It is hard. That's a fact. So please don't think I was belittling your struggles in my PP.

I had to fight for my son's school place, for his right to involvement from disability social services, and am currently fighting for his right to have a blue badge. All those obstacles in our way aren't his fault though, it's the huge societal bias against the disabled. And the government don't give a shit about our disabled kids and refuse to allocate adequate funding to support them.

Despite all that, I wouldn't change a single hair on my child's head. He is perfect, it's the system that's rotten.

@folkybythesea

Both my husband and I are neurodiverse and we have an autistic son, 7, who also has GDD and a moderate learning disability. He goes to a special school and we have many things in place to keep him safe and happy.

I could easily go down the path you are trading right now, but really, what would be the point? He's here. I love him. He is exactly who he has always been meant to be. I couldn't change him, and even if I could, I wouldn't. And I genuinely mean that, I don't know who my son would be without his SEN. He wouldn't be my child, I know that.

Nobody ever gets the family they imagine themselves having, not you or me or anyone else on here. We all have to work with what we are given.

Btw, nobody in our family just has an 'ok life'. We have pretty awesome lives!

I have something in my eye, what a lovely post.

Just remember the feelings and thoughts your DS has are normal for him. My thoughts and feelings I have are normal to me. We are who we are. We all need help, I have anxiety because of my job and I use meds and calming techniques to help me through the tougher times but these dont mean I’m not me it’s just part and parcel of the package that is me. There’s so much advice and guidance on SEN read what you can and tailor it to your DS, you and your husband know what’s best.

@folkybythesea I know that neurodiverse people like ourselves can have great lives. It's just so hard to see DS struggle with it and it's particularly hard as I also struggled and two nervous breakdowns later, I just find it so hard that he might also go through that. I did sort of think about it before and even left my previous relationship in part because my ex-partner also had ASD and I was really concerned about any kids that we might have (there were lots of other reasons). It's just hard, because if DH had had kids with anyone else, they wouldn't have to go through this. But because of me, they do. Navigating this as a neurodiverse mother is very hard. He looks to me to know whats right, but I dont

[quote 2025bbj]@folkybythesea I know that neurodiverse people like ourselves can have great lives. It's just so hard to see DS struggle with it and it's particularly hard as I also struggled and two nervous breakdowns later, I just find it so hard that he might also go through that. I did sort of think about it before and even left my previous relationship in part because my ex-partner also had ASD and I was really concerned about any kids that we might have (there were lots of other reasons). It's just hard, because if DH had had kids with anyone else, they wouldn't have to go through this. But because of me, they do. Navigating this as a neurodiverse mother is very hard. He looks to me to know whats right, but I dont[/quote]
But you do. I'm a neurodiverse mother too. I've accepted that my life feels and looks different to life for a lot of other people. And I've genuinely made my peace with that after forty years of feeling like I was broken or useless.

You do have everything within you to do right by your child, and as a neurodiverse mother you have insight above and beyond into things that your child will struggle with. Trust me, that is a gift! You have struggled in your life but you absolutely can still raise a happy neurodiverse child.