I know this is an older thread but so need to vent. My son has hypotonia and attends physio fortnightly which will need to continue indefinitely if he's to meet his milestones. He's scheduled for an MRI and EEG (he's been having episodes of shaking) and we are waiting on some blood results that we are told have some abnormalities and needed to be sent for further testing.
but because he looks no different to any other baby my husband and I always get dismissed like "oh every baby develops at different rates" "but he's so attractive how can there be anything wrong"?! It makes me want to SCREAM
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18-02-2015 18:08 #71Junior Member
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- Feb 2015
18-02-2015 18:13 #72
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18-02-2015 21:45 #73
Hugs hugs hugs
Totally understand where you're coming from.
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11-06-2015 19:38 #74
I am going to post on here soon. I have had it. But I need to calm down before I can write it.
11-06-2015 21:20 #75
This has happened to me quite a lot in recent weeks especially from family it hurts my head just thinking about it. I've seen it's an old thread but good to let it out if anyone wants to read. My DS just had a diagnosis about a month ago of Mecp2 duplication syndrome, it has many characteristics of autism but is in no way ASD, anyway most of my DH's family keep saying 'oh this will help him blah blah and this' nothing will bloody help him he has a syndrome that will make him regress after time, we've already seen regression in him. I know people are trying to help but inside I'm killing thinking shut up you are obviously not well informed on his illness so put a sock in it.
Also one of the teachers at his toddler group the otherday asked how we were, I haven't seen her there for a while, I say well ok still having down days and it hurts thinking to much about it all she then goes on to say really you've known for a while now are you not over it yet. I mean wtf it's been about a month since he was diagnosed I'm still learning new things about his syndrome, no I'm not bloody ok lady jog on... Grr haha good to get it out.
Last edited by zoz; 11-06-2015 at 21:23.
29-10-2016 22:52 #76
I FRUCKING HATE YOU AUTISM!!
I loathe you!! I despise you!! You're a frucking curse and the cross my baby will have to bear for the rest of her life!!
You stole who she could of been, who she would have been and who she should have been and instead left her soul trapped in some mental frucking maze consisting of behaviours and compulsions that she doesn't understand stuck behind the 8-ball from the frucking start in a world she can't make sense of!!!
There's not a damn thing I can do about it either!!! I hate you even more for that!!! Believe you me when I tell you that there's nothing in this world that I wouldn't do to get rid of you and exorcise you from the depths of my daughter for good, you wretched, evil, insidious, b*stard!!!
Every single day is a battle with you!!! Every...Single...Bloody...Day!!! I'm so tired of your sh!t!!! So...Bloody...Tired!!! I know what you're trying to do...you're trying to break me..Not Going To Happen!!!! I can't and won't allow it!!!
You understimate me...when it comes to my DD, I'll come out swinging even if I'm down on my knees doing it!!!
You see...I love her more than love itself...more than life itself and I won't let you take her from me. I will fight you for every second of every minute of every hour of every day that there's life in me...
While there's still breath in my body I will fight you and make sure my baby has every opportunity available to her in order for her to be able to live the very best life possible where she's able to reach her full potential...a life full of laughter and love in a world she can understand not only her place in it but where others fit into it too.
A world where you only exist in the background of her life instead of completely dominating it!!! That's my plan for you Autism!!! So how do you like them apples hey?????? No?? Like I give a sh!t!!! (thought I'd take a leaf out of your book!!)
Until we meet again for yet another round in the ring, I'll leave you with the usual goodbye: "FRUCK YOU AUTISM!!!!"
Last edited by BlondeinBrisvegas; 30-10-2016 at 08:29.
30-10-2016 06:54 #77
Special Needs Vent Thread
@BlondeinBrisvegas I'm so sorry, what a frucked up cruel universe this place can be. I don't know why we are dealt the cards we are given... I had tears falling reading your post....
You're doing a frucking amazing job - your strength and love for your daughter will move mountains. It's hard to see day by day, but it's happening!
And who knows where this will lead. All I know is that the sun will rise every morning, every corner brings opportunity and challenges.
You are full of love and fight and there's nothing better or stronger than that.
Swing away BIB. And surround yourselves with love. Life, for both your and your daughter, will be better because of it.
(((( big warrior hugs )))))
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30-10-2016 08:42 #78
Am crying for you @BlondeinBrisvegas life is just so incredibly hard at times, it's an absolute tragedy & heartbreaking to hear your pain through the depth of your love. No words, but endless hugs as you fight through another day. ❤️
31-10-2016 07:35 #79
31-10-2016 07:49 #80Senior Member
- Join Date
- Aug 2013
Sending you and your DD loads of love !
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