To feel jealous of people with neurotypical children?

[littlesm]

I'm not usually a bitter or jealous person but as my children are growing up I look at families with just neurotypical children (families I know well not just assuming) and can't help but feel a pang of jealousy. Is it just me?

Just checking in to say that I hope everyone is as well as can be today.

YANBU

The summer holidays are relentless when you have with SEN aren't they. No summer camps for our kiddos. Loss of routine. Sleep all over the place. Exhausted.

I don’t think my son sees it as me resenting him at all. And I don’t wish my son was someone else, I wish he found things easier.

Do I want my son to be up for hours every night then exhausted in the mornings while his siblings sleep happily? No, of course not. Do I want him to be excluded by his peers because he finds it hard to get along with them? No, I’d like him to have lots of friends to play with.

Everyone wants their child to have an easy life. Of course someone whose child can’t walk will think ‘I wish my child could walk, then everything would be easier for them, they could easily travel and play sports without adjustments.’ Someone whose child will always be non verbal will OF COURSE think ‘I wish my child could communicate so I could know what he wants and if he’s happy.’

They won’t smile cheerfully and think never mind, it is what it is. Ironically it’s usually those without nd children who love to tell you it is what it is. Well, for you it isn’t, so who asked your opinion.

I will share one experience I had with one autistic DS and his mum.

We were on a packed train one day, a few years ago and a poor boy was evidently finding it too much. He was shouting and slapping his own head. Now, to be fair, I don't know if it was specifically autism here. It could have been any number of neurological conditions. He was quite clearly ND in some way, though.

Most people were either ostentatiously ignoring them (if you understand what I mean there - they're not looking, but you can just feel their negative emotions pressing down upon you) or staring in disbelief. The poor DMum looked like she was a stranger to sleep. I reached into my backpack and picked out some spare earplugs (I always have at least three pairs with me) and two small chocolate bars from one of those packs - one for her and one for him - I'd just bought them to take home. Then I gently squeezed her hand and handed them to her. She looked as though she was going to cry. I gave her what I hoped looked like an understanding smile - I think by this point she had registered my prescription sunglasses (it was November and overcast) and my own earplugs - and she gave me a smile back. One of the most heart warming smiles I've ever received.

I then retreated to bite down hard on my own fingers. Firstly because trying not to meltdown when you are on a crowded train is like having grit sprinkled in your eyes and whilst they are being held open. Secondly, I felt a bit tearful myself by that point.

I'm not going to say that I understand how autism parents feel - how could I possibly? I only have experience of my own autism and my husband. This certainly doesn't mean that I am blind and unfeeling to your own struggles, though. I do see you and I do care.

@Kanaloa Thank you for your kind words! We have met many wonderful people who care about children with special needs. Both SN schools my son went to were exceptionally good. I will be eternally grateful to his teachers for their kindness, care and understanding.
Sadly, we also met some horrid people who work with SEN children. Our DS was abused on the school transport a few years ago by the transport assistant. She was later banned from working with vulnerable people, due to the nasty, utterly vile things she said to our DS (I put a recording stick for a day in his bag and got proof). The way he regressed after travelling to school with that person, I will never forgive her for what she did. That made his anxiety so much worse. I could never prove it, but suspect she might hit him too, from the way he was behaving, cowering and hiding in the closet after school. Since he's non-verbal, he could only cry and point to the PEC of the school bus.
The school acted immediately, and were very helpful in dealing with that. But sadly, the trauma was too much, and his anxiety sky-rocketed.
I also met with many indifferent health professionals and very unhelpful social workers.

[quote PetuniaEvershot]@Kanaloa Thank you for your kind words! We have met many wonderful people who care about children with special needs. Both SN schools my son went to were exceptionally good. I will be eternally grateful to his teachers for their kindness, care and understanding.
Sadly, we also met some horrid people who work with SEN children. Our DS was abused on the school transport a few years ago by the transport assistant. She was later banned from working with vulnerable people, due to the nasty, utterly vile things she said to our DS (I put a recording stick for a day in his bag and got proof). The way he regressed after travelling to school with that person, I will never forgive her for what she did. That made his anxiety so much worse. I could never prove it, but suspect she might hit him too, from the way he was behaving, cowering and hiding in the closet after school. Since he's non-verbal, he could only cry and point to the PEC of the school bus.
The school acted immediately, and were very helpful in dealing with that. But sadly, the trauma was too much, and his anxiety sky-rocketed.
I also met with many indifferent health professionals and very unhelpful social workers.[/quote]
Thats awful, sadly it doesnt surprise me😢
My sons transport assistant, s have, nt been abusive, but many have been useless, im not sure what training they get.

How horrifying. I’m glad she was fired. It must be the most terrifying thing to have a child who’s non verbal and can’t clearly express these things, just having to guess. You would thing her colleagues and others would have reported her long before it got to a parent doing so!

I'm not sure, I have a High functioning 14yr old and a neurotypical 11 yr old. Whilst yes, the 14 yr old can be draining, I always know if somethings wrong and can have a direct and frank discussion. I find my 11yr old a bit of a deep ocean, I think they act as they think the ought to sometimes and I find it hard to gauge.
I suspect I'm more like my 14 yr old, which is why I probably find him easier.

I do think it depends on where exactly they are on the spectrum and whether the parent is NT or ND. I also think what your feeling could also apply to many other circumstances too like illnesses/other disabilities.

Nothing wrong with your feelings though but I don't think it's specific to autism, to many other factors and to many other comparisons when it comes to family life. People will often crave 'normal' for various reasons.

@LittleMissBoss I do think it depends on where exactly they are on the spectrum and whether the parent is NT or ND. I also think what your feeling could also apply to many other circumstances too like illnesses/other disabilities.

The spectrum is such that isn't a sliding scale, as you suggest here. It's more of a multi-spiked splat, or a wheel, if you will. Mine looks very different to my teen's, and probably very different to any other ASD person's.

helpful linky: themighty.com/2020/03/autism-spectrum-wheel/

For those who think that autism is a sliding scale, and that people are either "a bit autistic" or "very autistic", this might help you to understand that spectrum a wee bit better: the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

@doodlebug71
I know it's not a sliding scale, I'm lucky mine is very similar to his, this is my experience, everyones experience is different.
I have researched quite a bit. My description never suggested a sliding scale, spectrum suggest something very different and varying.

[quote Doodlebug71]**@LittleMissBoss* I do think it depends on where exactly they are on the spectrum and whether the parent is NT or ND. I also think what your feeling could also apply to many other circumstances too like illnesses/other disabilities.*

The spectrum is such that isn't a sliding scale, as you suggest here. It's more of a multi-spiked splat, or a wheel, if you will. Mine looks very different to my teen's, and probably very different to any other ASD person's.

helpful linky: themighty.com/2020/03/autism-spectrum-wheel/[/quote]
But some people such as my son are severley impacted in all area, s

[quote PetuniaEvershot]@Kanaloa Thank you for your kind words! We have met many wonderful people who care about children with special needs. Both SN schools my son went to were exceptionally good. I will be eternally grateful to his teachers for their kindness, care and understanding.
Sadly, we also met some horrid people who work with SEN children. Our DS was abused on the school transport a few years ago by the transport assistant. She was later banned from working with vulnerable people, due to the nasty, utterly vile things she said to our DS (I put a recording stick for a day in his bag and got proof). The way he regressed after travelling to school with that person, I will never forgive her for what she did. That made his anxiety so much worse. I could never prove it, but suspect she might hit him too, from the way he was behaving, cowering and hiding in the closet after school. Since he's non-verbal, he could only cry and point to the PEC of the school bus.
The school acted immediately, and were very helpful in dealing with that. But sadly, the trauma was too much, and his anxiety sky-rocketed.
I also met with many indifferent health professionals and very unhelpful social workers.[/quote]
I avoid school transport like the plague for this exact reason, I just can't put my boy's life temporarily in the hands of people that I don't trust our local authority to vet. His school is amazing and I 100% trust staff there, but transport seems to be much less regulated, and potentially more problematic. It's a shame for me, because I lose an hour or more of my day to transporting him, but at least I can be sure he's happy before he gets to his class. I'm privileged enough to live near my son's school and own a car, so I recognise this isn't an option for many people.

Thank you OP and to everyone else commenting here.

I have only one child, now an adult in their twenties. He was diagnosed in mid teens with Aspergers. To my mind that doesn't quite fit. Although bright, he has never worked and has been sectioned three times with psychosis.

I feel gutted that apart from me no one seems to love and care about him. Consequently, I worry constantly about how he will cope when I die. The one good thing is that he has a social worker and care package in place and has just moved into his latest, third supported housing unit.

So, I do have some freedom unlike so many of you on here. But yes I feel so envious of his peers who have progressed and are achieving all the hopes and dreams we wish for our children when they are babies and we think about their future. But the what if thoughts are there when I see his cousin, who is 18 months older, and has his own children.

It upsets me so much that my son is missing out on human relationships and experiences. I constantly rage inside my head, why is everyone ignoring him? Don't ask me once in a blue moon how he is, go and see him instead. But they don't care enough to do that. So I generally don't volunteer any information about my only child because no one is genuinely interested in him.

Yes. Doesn't mean we love DS any less though. Hate the humble bragging about how 'gifted' their NT children are.

Oh and the assumption that SEN parents are affluent and have loads of free time

@Superdoopersoup

Sending hugs & best wishes - I'm so sorry for your troubles and the soul ache you are feeling 💔
I have a beautiful kind clever "high functioning" ASD 24 year old son who was suicidal & a CAMHS inpatient at 13.
He also suffers from paranoia when his anxiety spirals out of control and depression too.
He's moved in & out of home a couple of times & is going again in September to live with very good friends & I am pleased but on tenter hooks about it.
I know he worries about a future without me & DH & I try not to think about it tbh.
Just wish for him a loving relationship with a very understanding person.
Unless you are the parent of a child with SEN it's impossible to know the stress involved - it's been likened to battle fatigue in armed forces 😞

[quote Doodlebug71]For those who think that autism is a sliding scale, and that people are either "a bit autistic" or "very autistic", this might help you to understand that spectrum a wee bit better: the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/[/quote]

The issue is that sometimes someone else's autism diagnosis may as well be a completely different diagnosis compared to each other

My uncle has ASD and finds social situations incredibly tough but can articulate himself well, and holds down a job okay. Very clever.

My own DS shows absolutely no signs of being toilet trained, can't understand a sentence like 'it's in that bag' or 'Get shoes'. He can't speak a single word, even now. Hardly comparable at all! May as well be a different diagnosis so isn't relatable

[quote LittleMissBoss]@doodlebug71
I know it's not a sliding scale, I'm lucky mine is very similar to his, this is my experience, everyones experience is different.
I have researched quite a bit. My description never suggested a sliding scale, spectrum suggest something very different and varying.[/quote]
@LittleMissBoss This: do think it depends on where exactly they are on the spectrum does indeed suggest a sliding scale.

@NotPersephone

How can I advocate for my DS if I am forbidden by “the autistic community” (in truth, a tiny, self-appointed, militant section of it) from describing how it impacts his life? Or my life, for that matter?

We've experienced the very same. Except that we don't take any notice of that tiny percentage of self-appointed arbiters of Grand Fromagerie and muddy knickers. They are not the ones trying to support people when it all kicks off, or writing the reports in support of yet another dossier that must be completed in order to access support. So they can stick their shit where the sun don't shine. .

@lovesthosebeeps

The issue is that sometimes someone else's autism diagnosis may as well be a completely different diagnosis compared to each other

I know. That was the point.

As an aside, one of the things that irritates me when communicating with so-called specialist staff is their tendency to use the phrase, "person with autism" instead of autistic. We don't refer to a homosexual as a person with homosexuality, so WTF is that about? Just like when people say, "My niece/nephew/some other relative has that" instead of is autistic. Autism isn't something one has, it's something one is.

One has a cold, or the heebie-jeebies. One does not have autism. One is autistic.

When you have met one person with autism you have met one person with autism. Lazy stereotypes drive me mad and don’t help anyone.

I am DS advocate. I know his needs better than anyone else. Because of what I have learnt through DS I am in a much better position to empathise with others but it doesn’t mean I know what they are experiencing.

@NotPersephone

Exactly *@lovesthosebeeps* and it’s the autistic people in the former category who have completely hijacked the narrative.

It doesn’t matter if you call it a sliding scale, a spectrum or an amorphous blob - the point is that the differences between individuals - ostensibly with the same “diagnosis” - are so vast as to render the term autistic almost meaningless.

How can I advocate for my DS if I am forbidden by “the autistic community” (in truth, a tiny, self-appointed, militant section of it) from describing how it impacts his life? Or my life, for that matter?

That is a very peculiar post. There is no such as "the autistic community" of, if there is, no one has told me about it and I'm autistic. On the other hand, I rarely get invited to things.

How can anyone "forbid" you from speaking about your son's condition or how it affects your life?

If you are posting in a space that is for autistic people to speak about their condition and how it affects them and you post about how your son's condition affects you then, yes, I can see other posters saying that your contributions aren't appropriate.

[quote Doodlebug71]@lovesthosebeeps

The issue is that sometimes someone else's autism diagnosis may as well be a completely different diagnosis compared to each other

I know. That was the point.

As an aside, one of the things that irritates me when communicating with so-called specialist staff is their tendency to use the phrase, "person with autism" instead of autistic. We don't refer to a homosexual as a person with homosexuality, so WTF is that about? Just like when people say, "My niece/nephew/some other relative has that" instead of is autistic. Autism isn't something one has, it's something one is.

One has a cold, or the heebie-jeebies. One does not have autism. One is autistic.[/quote]
That is the result of person-first language, which I've always found to be a bit like rearranging deck chairs on the Titanic.

I have autism; I'm autistic. Both are fine with me. Neither wording changes my condition or how society treats me.