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Feeling ripped off

13 replies

Msqueen33 · 12/07/2016 19:36

I love my kids more than anything but having a second child with autism has left me feeling bloody ripped off. She is non verbal, won't wear sodding shoes, doesn't sleep and spends a lot of her time screaming and screeching. After a hellish three years with my middle child with autism I never expected to be back here again with a child with even less language and a scream that could match that of a air horn. When I see other toddlers I feel ripped off. I know it's not her fault, I know she can't help it and didn't ask to be born but the unfair of it all when I'm yet again spending my night getting her into bed and being jumped on is making me question why when I did all the right things in pregnancy have I now ended up with another child who struggles. Sorry this is another woe is me post.

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zzzzz · 12/07/2016 19:52

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MaterofDragons · 13/07/2016 12:07

It's a difficult situation and I can relate as I have twins with asd. Is it possible to recall if your older DD had similar issues and how she developed? How is she doing now? You may find some hope in that.

I second melatonin and DLA. Both have been sanity savers in our house.

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2boysnamedR · 13/07/2016 16:27

I'm about to start to start finding out if my third child has Sen. I feel your pain. Four kids and next to no experience of 'normal' childhood. It's impossible not to feel short changed.

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Msqueen33 · 13/07/2016 16:29

That's exactly it I feel short changed. I adore them and they're all very special but God I'd love not to be in speech therapy again or wondering if my child will ever speak. It's like an ongoing nightmare and there's no one around me who relates just those who go on about their nt problems which frankly sound like a stroll in the park most days. I'm starting to feel I have a bitter setting on my personality gauge.

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2boysnamedR · 13/07/2016 16:47

I feel that too. I keep thinking about my first child annoying me with his constant chatter. I'd rip off my arm and BBQ it to hear it again. Little did I know I'd never ever hear that 'why? Why? Why?' Again. Just my silent why can't you talk? Why do you do that? Why me.
At least my friends complaining about their sats results, not getting top grades doesn't get to me. I just smile and think they have no idea how lucky they are.
It's not the needs I can't face, it's the system and fighting it I can't do.
Luckily for me I am experienced now and rarely have problems with my ASD boy. Everyone has the measure of how likely I am to give up when faced with a problem. But I'm done doing that again, my tribunals have killed off my fight and spirt. I'm pretty much done. In every aspect mentally and physically

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Msqueen33 · 13/07/2016 17:51

My eldest is and was a chatterbox and although I complain I know how lucky I am. Her middle sister (who has asd) although verbal it's hard to get into an in depth conversation well as much as you can with a six year old and my three year old says nothing. If I see one more Facebook post complaining about their child chattering too much I may well lose my shit. I feel like I'm at the bottom of a mountain I'm forced to keep climbing. Come September we fight to keep my dd's 1:1 hours and battle for an ehcp for my youngest. I wonder if you can buy strength.

How old are your kids 2boys?

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2boysnamedR · 13/07/2016 21:33

My boys are 12 (NT), 8, 4 and I have a 23 month dd.
You can't buy strength. It just comes from nowhere most days. I think I used my lifetimes worth in the last five years!
That's one good thing - I never knew how much I could care or what I could do until I had too. People see me as a strong person but I'm really not. Or I don't feel it anyway.
I hate FB for all those reasons but I also have found lots of help from support groups on there. If it wasn't for the groups I would leave.
Nobody gets it. My family just politly ignore it all. The non verbal non potty trained four year going into a specialist school. All blanked. That hurts so much. Mind you who needs that kind of support? I don't mention it any more to family

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eskimomama · 14/07/2016 19:40

I feel like I'm at the bottom of a mountain I'm forced to keep climbing.

OP I feel exactly like this. And I only have one child (6, ASD, non verbal, regular screaming too), never got the courage to have a second DC, although been dreaming about it all along, just to know what normal motherhood is like. But it looks so unlikely now.
You are not alone. I also feel ripped off. All I ever wanted was to have children, never cared for career or money, and my lovely DD and I are stuck in this autism madness for the rest of our lives. I also feel I'm the only one struggling this way and I don't know how long it will take before I completely lose my positiveness about life. I used to be such a positive, hopeful, friendly person, always loved being around kids and now, after years of seeing people judge my beautiful DD for her screaming and weird noises, I find myself ignoring NT children when they want to get my attention.

Thank goodness for this forum, showing us we aren't alone.

About sleep - melatonin is a god-send for us too, but sometimes isn't enough. DD had gut issues that were waking her up at night, and they had to be sorted out first.

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Msqueen33 · 15/07/2016 16:28

I thank god constantly for this forum. Irl I know no one in our situation. I'm quite frankly do almost anything to experience a normal development of a child. I feel like I'm missing out.

Eskimo you've described all that I was before two Sen kids and frankly a shit system broke me.

Two boys that's awful on the family. My girls Sen isn't mentioned it's kind of brushed under the carpet.

I amaze myself at my social politeness when someone tells me some mundane frankly stupid problem that I'd kill for when inside I'm thinking my three year old is non verbal, jumps off everything and frequently bites my hands amongst other things.

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MaterofDragons · 15/07/2016 20:42

The jumping and flapping I can handle I pretty much don't notice them anymore. The screams and shrieks on the other hand are still so jarring.

I can't imagine there ever being a future without screams and shrieks.

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Msqueen33 · 15/07/2016 22:52

That's what does me in is the screaming and shrieking. It's like nails down a black board. Jumping off stuff, the lack of interaction I can just about deal with but it's the long periods of screaming that really get to me.

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370tox · 18/07/2016 12:24

Lots of sympathy. It's no ones fault. Be really kind to yourself. You are doing an amazing job. There's a lot of ignorance out there.

Have you got a support group nearby?

Sorry not read the thread, didn't want to read and run

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Imnotacelebgetmeouttahere · 19/07/2016 21:44

Sounds exhausting! As a pp said be kind to yourself :) I have 4dc - 2 with SN and I was a fool to think at the start that they would be anything alike Hmm

I have one articulate, polite, quiet ( although chatty) well behaved pre teen but whose social and emotional skills / level are way below his age group.... And one non verbal ( technically) but extremely loud, roaring, aggressive, whirlwind 4yr old

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