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.

How do you mean @immortalmarble how old is he?

YANBU. In my experience there are two main types of SN parent. Ones who wouldn’t change a thing and ones who wish it was different.

I’m one of the latter. My DD’s disability is physical and she is the most amazing, articulate, determined, funny, sensitive, caring little girl. I wish with all my heart, for her, that she didn’t have to go through the shit she does. If I could magic her disability away, I would.

She, on the other hand, says she’d rather have it than not have it as it brings some perks which are brilliant for a 9 year old 😄.

There are silver linings. I’ve met some great people and had opportunities I wouldn’t have had. But the one thing I’ve learned is that there is no right or wrong way to feel about things. For me, the pain I feel when I see her struggling with things other kids can do does ease as she gets older. Partly because she has found her own way to do stuff and is entirely happy but also because after seeing it so often it becomes more bearable. But when it does hit, it hits hard. I think it’s easier for us as she is our only child so we don’t have siblings which remind us of it every day.

Big hugs to you, I hope it gets easier, that you find the right support, and that your life is as kind as it can be in your situation.

@saffkey1 is your ds in special school or a mainstream? How is he getting on? My ds started school in September.

Even though dd11 has HFA, I could not see her using public transport on her own due to her high anxiety, or go to university unless her anxiety drastically reduces. Ds 6 who has developmental delay, speech and language delay, and learning difficulties, is more independent and mature than dd. For example, I went to our local convenience shop, gave him £1 and waited outside, he chose an item for the right money, and got the right change and was so proud. Dd could not do this, as her anxiety is just too high. Ds wants to walk to the sop on his own which is 2 mins from our house, noway yet, but in a few years, definitely. DD11 cannot do this due to her anxiety, though she is perfectly capable. It just disables her.

There’s tons of stuff in the media about quirky hfa- Anne Hegarty, Sheldon Cooper (although to be fair it’s never actually said he has autism but it’s apparent), Young Sheldon spin off series, Chris Packham, many on the Undateables, Gary Numan etc. I could go on. I’m not saying by the way these people don’t have difficulties- of course they do, anyone with autism does (as me and my dh do- we are also quirky autism types!) but it’s not the same as my sons end - poo smearing, running into roads, banging into barriers and signs because he wants to hear how they sound when he kicks them, making random shouting noises, etc etc. The media doesn’t talk about that side of autism.

He is twenty. It’s very long and complex but really he is horribly awfully unaware of other people and how he comes across to them. He has no concept of what is appropriate, has severe anxiety which he attempts to self-medicate which exacerbates other symptoms, and generally speaking is ill equipped for adult life.

No they don't Fairylea, they certainly don't, your ds, sounds like my friend's ds11 who goes to the same SS as dd. He poo smears, does that at night, so she ends up cleaning all night, it is awful for her.

My ds is now 18 and has asd, severe learning difficulties and is non verbal so know exactly where your coming from.

I too would most definitely rather he didn’t have asd and the other difficulties and find it difficult to understand why other parents say they wouldn’t change a thing, I think why would you want your child to be so dependent on you constantly fighting their corner so they get everything that they are entitled to, and not do things that others my sons age are able to do like learning to drive, going to university, getting a girlfriend/boyfriend, getting married or having a job.

My ds is going through a big transition in 2019 with leaving sixth form at his special school (who have been amazing) and starting college and day services so he’s got alot of change happening as have we trying to get the right placements for him.

I think having a child with special needs or indeed any other issues you worry more about their long term future as in our case our ds is unable to contribute to any meetings we have about his future goals, its more what my dh and myself feel he would want and could enjoy doing to aid as smooth a transition for him.

Were also thinking ahead as to future supported living for him and looked at a few places but that wont be for a few years until he’s settled into his new daily routine and we find somewhere that meets his needs, but I do especially at the moment get days when I feel very sad and teary with the thought of me and my dh having to plan out his future because he’s unable to, infact at the moment it's quite exhausting but at least we know we've done our very best for him.

I think it’s possibly highlighted more as his sister is due to sit her gcse’s and is really focused and knows exactly what subjects she wants to do at sixth form and her career path and we have discussed with her what she wants to do but its been her expressing her wishes not us guessing what we think is best for them.

On saying all this we love him unconditionally he has achieved more than I would of imagined he could ever of done and I think alot has to do with his placement at his special school and it was the start of him being the best person he can be.

Yes Aeroflotgirl. We have the same thing. Ds hasn’t slept a night through in the 6 years he’s been alive. Most nights I’m stripping beds and cleaning poo. It’s exhausting and I’m sure it’s contributed to my own health issues.

And yes, completely relate to others posts about worrying long term. When you have a child with special needs you aren’t just guiding them into adulthood, you’re planning for their future when you’re not there anymore. That’s very scary.

Hi @danni0509 yes he is he started in September and was 5 in September ,the school is brilliant as are the teachers and staff i put a lot of energy time and money into supporting the school.It is a SEN school.

YANBU
A lot of people either genuinely don’t understand or are seeing the much portrayed ‘quirky’ thing that’s prevalent recently and whilst it’s ok to be quirky and different that’s not where autism ends the quirky person you see could have cried for hours beforehand , had to put on the best ‘mask’ and is exhausting themselves minute by minute then goes home and has a meltdown then is physically ruined for days afterwards and unable to function
It’s hell. Every minute of every day and often it can’t be seen but it’s physicaly painful sometimes to be so hyper aware of everything and so anxious and then trying to act ‘normal’

Exactly @Fairylea they don't do they thats the ugly side that stays behind closed doors.

I do wish that there was more awareness of just how hugely varied autism and autistics are. I hate the quirky eccentric stereotype, of course some do fit that stereotype in many ways(though that isn't all there is to them) and that's fine but we can also be pretty average and even dull. I am. There's nothing particularly interesting about me and I'm fine with that. I've always been considered a little different but I've had people say that I can't be autistic because I don't have any special abilities and I'm not noticeably quirky or eccentric. We aren't all Furries, LARPERS or savants.

Some things I would take away. Some things I would keep. I am waiting for diagnosis appointment and wish I was not autistic. (If it turns out I am) we are all high functioning so no intellectual difficulties so some things are easier, but there are still significant difficulties because high functioning only applies to not learning difficulties, not the actual functioning in the world and society.

Yes @Spieluhr in my dreams i would love to go into schools/workplaces to educate about autistic traits .My life would be a-lot easier if people were more aware of the behaviours that go with it

YANBU and I'm glad you started this thread as it's so reassuring to know others feel the same.

DS makes the most terrible high pitched noises at home, and sometimes I genuinely think I can't manage another day around him.

He struggles every single day with discomfort, anxiety and just being generally baffled and confused, and angry with his surroundings.

I drop him off near his school so he has a small piece of independence to walk in by himself, and watched him recently being followed in by a group of other boys, one copying his (very distinctive) walk.
He was unaware thankfully, but it genuinely hurts my heart to see how vulnerable he looks sometimes.

Again, YANBU

My son is currently crying, biting and hitting himself because he is unwell with something that hurts. He has asd, a learning disability and is non verbal. We have given him all the pain relief we can but of course he doesn't understand why it won't go away. We have been in this situation many times over the years and if we could 'change' him so he didn't feel the level of distress that he does, we would do it.

I know Fairylea, you worry for their future, and start planning way before, not how you would a child with no SN. You worry for the time that you will not be there, as we don't live forever.

This thread is a breath of fresh air, away from the positive mantra of not changing your child for the world type thing, that I have seen often on Facebook.

I'm with you.

DS is 8 and has ASD. I also have two younger children plus a DH who just doesn't engage in the whole thing.

I spend my whole life tense and anxious. I love my son to death but I wish the ASD would just fuck off.

There are a lot of things that are easy to post on Facebook and very hard to actually live.

Some of these stories are so sad to read. We have a family member who is getting old with a DS who will never live independently and she is really struggling with this.

This thread is the reality of Autism and the parents and carers who care for a child or adult with Autism.

@SprusselBrout I see what you mean. It's not all doom and gloom for my kids, and I know that if i could remove the autism they would not be quite the same person.

I'd like to do something even more impossible (I know that's a clumsy, nonsensical phrase but hopefully you get my gist) - I'd like to take some tweezers and remove just the anxiety, the distress, the lashing out, the sense that he is hated (even though he is very much loved) and the lack of basic hygiene. I would leave everything else alone.

Urgh @Notthecarwashagain thats made my heart ache