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DQMission

SN venting thread

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DQMission

Was thinking about JWTF's venting thread. Id like to start a thread (im sure there have been others) where we get to say the totally inappropriate things we would never say out loud. Obviously, a bit of common sense is required to make sure the vents dont get nasty, offensive or out of hand.

 

I'll start.

 

I hate how much micro-managing I have to do. I am so tired of me coming last, even if its just to be able to work and study. Its not like I want time and energy for anything other than the means to support my family. Im so fed up with being hamstrung by disability. Im sick of shifting goal posts. Im sick of others' opinions and expectations on my kids as well as me. Im sick of excusing/explaining my kids to avoid poor perceptions.

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Caitlin Happymeal

Oh wow! Yup you took the words right out of my mouth. All the things you said resonate with me.

 

I hate that I had to call a mental health hotline to help me talk my 9 year old out of self harming on the weekend. And I hate how honest I was with my colleagues when they asked if I had a good weekend. But I couldn't lie and it just came gushing out.

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CrankyM

I am also struggling with the micromanaging because I can tell you now if I don’t think of it, no one else with.

 

It’s the thought load that gets to me. Always being the one who has to try and foresee things for something as simple an outing. Think about the potential pitfalls, how it can be done. Balancing pushing a child out of his rut of avoidance and allowing him to avoid things due to anxiety. Organising meetings, organising reports, organising appointments, organising homework. Scaffolding homework, reminding about therapy homework. Reminding about the simple things like are you wearing underwear, having you washed yourself properly, did you remember xyz, arguments over hygiene requirements. Trying to ID why the child who is close to being a teenager is having a freak out over packing the dishwasher but volunteered to scrub a toilet. (Too many choices on one vs the other).

 

Someone said to me I should go out to an event here in town. And I asked how? How exactly can I do that when I have a child who would freak out if left with someone he doesn’t really know?

 

And the stress. I’m so tired of the stress.

 

And then lastly being told I’m “lucky” because my child is “high functioning”. And trying not to turn around and snarl something because I’m tried and I’m irrationally angry because I’ve had yet another argument with a government dept who sees him for 5 mins and makes a judgement.

 

Yet I love them dearly. I want the world for them. But I worry if they will ever cope without me to fall back into.

Edited by mayahlb
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Gruffalo's Child

I’m tired of not being able to discuss challenges with family members without being told to just ‘get therapy’. Yes, therapy has a place and can definitely help with many challenges my kids face but it is not the answer to every challenge in life!! And probably the person who would benefit the most from therapy is me, not my kids, so that I can learn better tools to cope when things get tough.

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Chaotic Pogo

Funny thing is, 2 days ago I was thinking about starting a ‘things making me happy’ thread in SN and wondering if that would be a positive or negative thing to do to everyone!

 

Today, nah. DD has a bad day at school. According to her, she is on her last warning from the principal. IDK. But 2 hours of hysteria, violence and drugging her to sleep and no doubt school refusal tomorrow.

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CrankyM

Funny thing is, 2 days ago I was thinking about starting a ‘things making me happy’ thread in SN and wondering if that would be a positive or negative thing to do to everyone!

 

A group I’m in on FB does a Terrific Tuesday and a whinge Wednesday threads and I think it’s great because you get to do both with people who understand.

 

I hope tomorrow goes better with your DD.

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~Jolly_F~

I have given up on FB groups, I get it they want to be inclusive but geez some days we are literally drowning from the weight of this life and we need to know we aren’t alone and someone dares say something and they are given a lecture on how their child isn’t a burden and they are doing it all wrong....

 

I am just sick of wading through the sh*tstorm that is our life really.

 

I so get the micro-managing thing, you are constantly playing out in your head to make sure there is nothing that can go wrong and yet it still does.

 

I had someone say we all go through that as parents when I was trying to talk about it, sure but as a parent of a NT kids also, it’s not the same, it just isn’t.

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gravity1

I’m sick of the stress, of school refusal and having to put on a front at work, pretending that I’ve got it all together when I just want to scream. I’m also a single parent and sometimes it’s all just too hard.

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Charli73

Yep micromanaging is exhausting me too.. but I have a DD who is NT also of a similar age and have to try and do things for her differently and it’s draining. “Why does he get the iPad for longer” etc...

 

Even the thought of doing anything different on th weekend or going anywhere new is too hard. Every time we get a new coordinator at after school care they “change” the way they do things and I have to start all

Over again explaining why you can’t just walk in and change sh*t!

 

I also hate that I have to have my DS on 3 different medications or he won’t go to school

Without having a meltdown or physically hurting someone. I hate it.

Edited by Charli73
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Chaotic Pogo

I’m not on FB.

 

EB gets it and 9/10 provides support and info without much judgement.

 

I hate going through ‘what will I say to DD to get her out the door and into the car without a meltdown’ every time. Deciding which kids has to sit in third row so they can’t hit each other. The meltdowns because one kid broke into the pantry for a midnight feast and the next kid thinks it’s not far they didn’t get (insert food). The meltdown from the first kid because you gave the second kid some (food) to make it fair, because they don’t have some now...

 

The screaming. Having to wear ear plugs to be around your kids. Scheduling appointments.

 

DEALING with the g@&$(:/&$ NDIS.

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MakesMeHappy

I hate that everyone thinks my child should be able to behave better now that he is a bit older (7) yes, he is much better than he was when he was younger but he still has impulse control issues and struggles with social norms.

 

I hate that we have so many therapies to do, they take up so much time and so much effort and when we fall behind a little I feel guilty. I hate that there is so many things to follow up on and so many meetings, phone calls, emails! I just want a break.

 

DS is really struggling at school or I should say the school are really struggling with him. He has high function autism and a sever speech delay. He is so needy, his is so whingy, he is so demanding and this is all to his lovely teacher. The school are beautiful with him and his teacher adores him dearly but it appears he runs the show in class but really I see why they do it this way because it keeps it all smooth sailing. But then I have the therapists (who are all also fantastic) pointing out how far behind he is. My mind is tired.

 

I just feel I give so much and it is not enough and I don’t know how to move forward, how to help him move forward.

 

I always thought DS would go through life fine he would just struggle a bit more than others but I am starting to realise that his ‘special needs’ might have more of an impact on his future than I originally thought. And that makes me sad

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Charli73

What I hate is the fights at the dinner table when I cook a healthy plate of food down and DS pushes the plate away and says “I’m not eating that it looks gross”.. it could be his favourite pasta, roast lamb, anything other than wraps and it’s a negotiation about how little he needs to eat of decent food. So over it. Every. single. night.

Edited by Charli73
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feelee

Both of my beautiful, beloved children have been diagnosed with autism this year.

 

I feel like my life has been turned upside down. I am trying to juggle multiple therapy appointments and work three days a week. The NDIS is a bureaucratic nightmare.

 

My own anxiety, which had been mostly ok for the past few years, has been massively triggered by all this and I have a constant weight of fear pressing down on me.

 

I am just so scared and overwhelmed right now.

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Feral33

I hate that therapies don't make any difference.

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Amica

I hate fighting for inclusion, and fighting against ignorance.

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CrankyM

NDIS is a total head****. Something that was supposed to help puts soooooo much extra stress in place. The yearly arguments and stress over wondering if you will get enough funding and what you might be able to cut back on and the stress of the potential of everything falling to sh*t because you can’t afford to pay for therapy at NDIS prices ($215.09 where I am).

 

And I should say I have 1, just 1 singular FB group I’m in regarding asd that I find helpful. Likely because half the parents there are also autistic.

 

You know what I’m hating at the moment though? The reality that we are somewhere that the school is 90% inclusive and supportive. Which is amazing compared to what I hear. Except I hate living here. Hate it so much. It’s remote, it’s isolated and I’m slowly losing my mind year in year out. But more then likely I won’t be able to move until after the kids have finished highschool because I doubt we will get the support elsewhere I the education system.

 

Sorry. I’m not in the greatest headspace at the moment because yet again I’m the one sacrificing what I would like for what benefits my children. Who are currently refusing to sleep and getting more and more hyper until I swear they will literally bounce off the wall (yeah I discovered the youngest kid hasn’t taken his meds for 5 days and am seeing yet again exactly why he requires them...)

Edited by mayahlb
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lazycritter

Everything

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Bethlehem Babe

I hate that simple things become major things.

 

Tonight we had a meltdown.

Because

1. He’s on antibiotics. He has a penicillin allergy as well as autism and Spd. And he now needs to take caplets. We are working with them because he’s sick and needs to take them.

2. He hasn’t had a bowel motion for four + days and has been throwing up. So we needed to get him back onto his movicol.

3. He has a loose tooth and he wants it out because he wants to earn money for a video game.

4. It rained on the weekend and he couldn’t mow the lawns to earn money for said video game on sale. And he’s hyper focused on earning the money.

5. We made him do his science homework which was to go and collect dirt and rocks.

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Bethlehem Babe

Oh and I’m coming to the realisation that I may never work full time or have a career again.

 

Speech

Ot

Psychologist

Learning support

Pead

Etc. the appointments feel like they never end.

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Caitlin Happymeal

Bethlehem Babe, I feel that. I'm currently going through a "i shouldnt have given up my shift work life because i could actually fit in my kids therapies even though it wasn't healthy for me" crisis. On paper, i have a great job. In reality, the juggle is just getting too much for me and i'm nearly ready to crack. So much damn pressure.

 

Oh yeah, and NDIS. 'Nuff said.

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Hypnic Jerk

I hate that despite having a gorgeous, easygoing child, and having done every course on ASD under the sun I am still not confident in raising him.

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DQMission

Thats a big one too, parental confidence is a unicorn for most parents of neurodiverse kids. I am quite confident about my kids medical and physical conditions as they are predictable in their progression and the steps taken to treat/address. Their ASD/ODD/GAD/PTSD? One big ball of who the **** knows because most often the professionals also have zero idea.

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Hypnic Jerk

I’ll start my own thread soon about DS and where to with him. Heads up: he speaks but not well, grammar, tense, pronouns all over the place.

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123Tree

All this resonates with me.

 

I am sick of bloody appointment after appointment every week.

Edited by 123tree
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Etcetera

My eldest is an adult in 5 years. How the **** have we gotten to this point already with him still being so far 'behind'? It scares me so much.

 

I'm always exhausted.

 

The whinging. The constant issues and feeling like I have to walk on eggshells constantly. The having to analyse wtf someone is acting a certain way - had a small breakthrough yesterday when I figured out why collecting firewood is such an issue for my eldest. But having to figure it out in the first place... and then feeling guilty because I thought he was just being a sh*t but he legitimately cannot do it.

 

I love my kids, but it sucks.

 

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