AIBU to sometime be extremely jealous of parents with NT kids

[Studyinghell]

Just tht really, not that I’d wish his personality away or anything like that. But when things are hard Im so jealous of parents with NT kids and kids with no medical conditions

Thank you Studyinghell for starting this thread, and all of you who have contributed.

Reading about your experiences makes me feel much less guilty. My ds has autism and recently I've found myself occasionally wishing that he didn't, and imagining how things might be different if he was NT. And then feeling awful and ashamed for thinking such things. It is reassuring to know it's not an uncommon feeling.

One thing I have noticed since living in ND World is how families fairly often have more than one ND child (both mine have dx). And now that I have raised my head and looked around my family I can see we are littered with ND (all undiagnosed). I'm sure DM has ADHD, DF for sure is on the spectrum, I can't tell re myself as I have simply lost the plot anyway.

Hi everyone. I am afraid I have no experience with any of the challenges you face. You are all superb parents doing a great job in difficult and challenging situations. I have read the entire thread and a common complaint is other mums reactions in public settings. I just wondered, if I was to come across a situation like this what would the most helpful or supportive reaction be that you would like to see? I would hate to think that I could make a situation worse when I would want to help... Apologies if I am out of place.

No it’s normal. Try and find others in the same situation as it’s isolating. And by same I don’t necessarily mean same diagnosis I mean same level of need/accessing same services etc.

My son is severely autistic with severe LD’s & epilepsy & when he was young I didn’t find ASD support groups that helpful as many of the families were dealing with HFA, so had their own - but very different - problems. I found support via parents I met through my son’s special school and respite service. Now he’s been carted off to Hospital the other side of the country I found I needed to hunt out parents dealing with that particular pleasure because it’s a whole different set of issues again. I don’t know anyone locally but have found lots of support online.

Anyway ime if you’re feeling this way then finding others in the same situation tends to make it all a bit less raw.

As hard as it is to believe, there is - or certainly can be - a fate worse than infertility.

YANBU @Studyinghell and I say that as someone who has no direct experience at all, only watching my best friend of nearly 40 years go through the process.

Of course, nobody would wish their child away. But life with a DC with additional needs can be profoundly mentally and emotionally exhausting on a daily basis. Hell, an hourly basis.

And to whoever made the 'samey, boring NT' comment, clearly it's not true (what with SN not being the only way to be interesting), but I get why you have to say it.

to everyone who has so much to cope with every single day.

Our severely disabled child is I respite tonight and I just noticed that my other two 7 and 11 are all over me and cuddling..... No pump, meds, sitting in the floor to wait to go asleep, preparing ketogenic feed. No nappies, dressing, undressing, peg cleaning, no seizures...I could go on....but this all means no DS9 and I love him and yes I should be sleeping but I'm awake.....
He's hard work and life is very challenging with him......if I changed him who would he be? Not my bubba!
I'll stick to my crazy SN life and watch the neuros stomp about and moan that they've only had 6 hours sleep..when that's a lay in of about 4 hours extra !!!!

if I was to come across a situation like this what would the most helpful or supportive reaction be that you would like to see?

In the main, just be kind. Don't judge, don't stare, don't make negative comments. If you have time then ask is everything okay or if you can help.

This is the kind of conversation we used to have on the SN board.

I posted from 2006 to 2012.

I still get PMs about posts I wrote then.

Squid tee what was your job before?

My son has severe autism and learning disabilities , iof course we love him to bits but it is hard sometimes and as a pp said some autism groups are not really helpful to my son as a lot of children are predominantly high functioning , there are always families that have it worse but its ok to say life is hard sometimes, that said he's very funny,and he makes me smile every day i .

This thread has made me feel so much better. In another group I’m in, Ive been made to feel very guilty for wishing things were different. As if the problems my son is facing are just a harmless quirk of personality rather than debilitating issues that are likely to be lifelong.

I want my twins to be close. I want them to be able to go to the same school. I want him to be able to live independently and have a career and do whatever he wants with his life. I don’t think that’s an unreasonable list of wishes for my child, but some people seem to think it’s unreasonable.

I love my boys more than life itself. I want what’s best for them, that is all.

If the SN boards are really quiet, why can't we start a rolling SN chat thread on the main boards like the sweary threads, mouldies, etc? More people use Chat or AIBU

meglet while my DD has some additional needs, she is a LOT easier than my DS. And I feel really guilty for heaving a sigh of relief when I just have her on my own.

In another group I’m in, Ive been made to feel very guilty for wishing things were different. As if the problems my son is facing are just a harmless quirk of personality rather than debilitating issues that are likely to be lifelong

Yeah - that’s why better support tends to come from those with same level of need/accessing same services rather than those with same dx.

Ive been made to feel very guilty for wishing things were different.

DH and I were having a talk about this the other day and cane to the conclusion that, when you have a child with disabilities, a lot of people expect you to be almost saintly. You're perceived as so patient, so kind, so generous, so gentle and caring, people don't know how you do it, how you cope, how you manage, you're so strong, etc. And you're supposed to be this fierce Mama, spending your days advocating for your child, promoting the positive side of ,and educating everyone around you about it so that the world can be a better place. I've heard said about me by MIL that DS is "autistic and it can be such a trial but my son and DIL handle it beautifully" and that "God sends special children to special parents because he knows they'll love them the most". It's twee, patronising bullcrap and I hate it.

You can love your child at the same time as wishing things could be different. You can advocate for them and fight for them at the same time as feeling a pang for what could have been. You can challenge negative attitudes towards you and your child at the same time as wondering how your life might have been otherwise.

No guilt, no shame, we're only human

Absolutley Devilish. Autism is such a huge spectrum it isnt just one diag osis or it shouldnt be .

Due to GDD ds still can't even sit properly at 2 years old.

Seeing people shout at their younger toddlers for running around and playing actually makes me cry sometimes. So many people don't know how lucky they are.

Upthread I caused offence with a "identikit, samey, boring NT child," comment to @CuntyMcFuckerson

I have one NT child (possibly 2, still not sure about DC3 being NT) . I don't think it's rude to describe her that way at all. So driven by conformism, societal norms, and fitting in... and it's pretty boring if I am honest. I sometimes wonder who she really is, under all that.

I am really glad that my DS is not like that, becuase his ASD makes him who he is. That doesn't mean he isn't a hell of a lot harder to parent. It's just that reflecting on what I am glad about, his non-confirmism and the absence of the drive to fit in is delightful. And I have no doubt that DS is expressing his authentic self to the world, most of the time (except when he is masking at school).

Onlyhappy if you are on face book there is a group called mu child has global development delay , you may find it useful?

my!

Sorry to bang on but there was a long period when people on the sn board used “saintly” or “saintlydame” at the beginning of their user names for precisely this reason......

I had a friend whose baby died and that was even worse. If she failed to behave like the grieving Virgin Mary for one split second all the “support” suddenly vanished.

People don’t like to hear the truth which is why we need specialist boards to flourish.

But i dp hear you Onlyhappy ds2 is 8 and nonverbal and when people say they find their childs incessant talking annoying i would give anuthing to hear him talk

@Pixiedust2017 - some examples of amazing things people have done include

Asking before using the hand-dryers in public toilets (it's obvious that my DC does not like loud noises)

Offering to have, sometimes separate, smaller and quieter birthday trips for him and his friend(s) when he can't manage full-on birthday parties

Not judging or staring during massive public meltdowns, but asking if I need help instead.

Offering to always have my other child(ren) to play dates at the other house and never expecting a reciprocal invite back because my DS often can't cope with new people in our house.

The main thing is to be kind, teach your children to be kind, and don't leave our DC out because they are different.

I’m in a theme park right now. Ds begged me not to get the special disability assistance for him. So I’m of course we didn’t but it’s so ducking hard to watch him miss out on fun things. He’s having a great time, I should focus on that but all I can see is kids his age enjoying the freedom a safe park allows. And yes he should be in school but quite frankly we spend the summer holidays in hospital and school is a shit show anyway.

The other reason to revive SN is to achieve change.

We totally shamed Dyson over their horrible hand-driers and it would be good to keep the pressure up. The Dyson super-noisy hand driers issue is a classic example of society being the problem.

Dyson sent me a “fake” version of the hand-drier but ds wouldn’t go into the same room with it.

Welcome to Beirut and all that....