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SN venting thread

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#26 null

Posted 13 August 2019 - 10:38 AM

My boys are 12 and my greatest worry is that they will not be able to live independently from me. They are still melting down 3 to 4 times per week. Any challenge, difficulty, or change to their routine results in meltdowns. It can happen anywhere: home, school, while we are out and about, on public transport, etc. I try not to think what others must be thinking when it happens but it's a struggle because that behaviour is ingrained in me. I worry about their safety and the safety of others when these meltdowns occur. I was told it would get better as they mature, with therapy, and with medication - it hasn't really changed significantly and each passing year I worry more and more about what the future holds for my boys.

#27 frazzle

Posted 13 August 2019 - 11:25 AM

High school next year - where should I begin???
We don't have the luxury of choice, many schools would point blank refuse my daughter. I don't want her back in a unit (like primary until year 5). But she won't cope with a 'normal' high school structure. Back to driving 30-40 minutes each way each day. Back to transitioning (at least the selected high school has an awesome transition program in Term 4). Back to being terrified she will abscond from the school grounds. Or spit at a teacher. Or start a fight with a big Year 10 kid (she is tiny but I call her my angry bunny).
But on a lighter note (!) started talking the puberty talk, looked at the books, did all the right thing. Left them with her to peruse. She hands them back to me the next night like they are unexploded ordnance, saying I need to put them away as they are 'too dangerous' ...
Oh, and she colour coded my chooks' eggs in the fridge from dark to light so I don't know which were laid first so I can use them first.

#28 Yippee-Ki-Yay

Posted 13 August 2019 - 11:27 AM

JWTF, I get what you mean. My older DS (now 18) can speak well enough to get by, but a lot of what he says is not accurate, because uses the wrong word, misunderstands what the other person has said, or simply mucks up the sentence into a jumble. Worst bit is that teachers, doctors, psychs (I know, WTF?!) dont get that. They only go by face value (even if you have reports that explain he might sound like he knows what he is saying, but he really doesnt) no matter how many times it is explained that they need to ask very specific questions and double check the answer by rephrasing to check consistency. Hospital is the WORST for registrars telling me to stop talking for him. I wish I didnt have to!!  It used to embarrass him so much that he refused to engage with a speechie. Now he knows how much it is impacting his ability to participate in the community, work and study and he wants speech therapy and we cant find one who has capacity to see him! Head meet brick wall.

#29 CrankyM

Posted 13 August 2019 - 12:09 PM

Oh yes the whole verbal thing. Any time emotions get heightened my kid struggles to communicate anything. Which people don't seem to get, at all. They keep trying to talk to him. I finally told the teacher to get him to write a note if he's upset. Which as he has the additional diagnosis of dyslexia and dysgraphia can be hard as well. But easier then trying to verbalise something.

As for highschool. I am stressed out of brain regarding highschool. We have 2 choices (state or catholic) and that it. And next year is the last year for primary school. No other town for 250kms and that one is even smaller and their highschool doesn't even go to yr 12.

#30 bubba boo

Posted 13 August 2019 - 12:25 PM

For me, it's having no one that gets what life is like. My family is already different due to our being a large family and homeschooling but add in everyone having disabilities and there goes any hope of anyone outside of us getting it. Then there's the fact that people are so scared by the fact that they don't understand that they don't even try to. Without any time, almost daily appointments and transport issues, its lonely.

#31 Elsegundo

Posted 13 August 2019 - 01:10 PM

So many of these are resonating, particularly the walking on eggshells and trying to pretend I'm doing a good job at work when so much of mental energy is given to just getting out the door in the morning with negotiations about getting dressed, eating, putting shoes on, going to school etc. Why can't I just get ready and wave everyone goodbye like on TV?

I've pretty much given up on the idea of having my own life, it's too hard sometimes. Have to let go of the career I wanted after finishing the degree as can't get others to look after ds. Can't even do my sport as can't go to training. Trying hard not to show that I'm down about it but it's making me really sad at the moment.

And can I add, just because ds is different, do we have to be excluded from all social activities? It's really lonely sometimes.  Talk to me while waiting for bell to ring, include me in parent nights out, tell us about the park plays on the holidays. It's not catching!

#32 Chaotic Pogo

Posted 13 August 2019 - 01:54 PM

I need Bookweek like I need a hole in the head.

I love reading and so do my kids. But the effort to dress up in a costume!!  and there's 3 of them.

#33 Chaotic Pogo

Posted 13 August 2019 - 02:40 PM

is it bad form to just do a movie character? I can buy those costumes.

#34 CrankyM

Posted 13 August 2019 - 02:58 PM

View PostChaotic Pogo, on 13 August 2019 - 02:40 PM, said:

is it bad form to just do a movie character? I can buy those costumes.

I always see heaps of kids as movie characters. A lot of movies for kids have books ;) mine hates hates hates dress ups so will only go as a “human being”. Last year he went as Steve from Minecraft. So blue shirt, black pants and a mask on a Paddlepop stick that I printed off google images.

Edited by mayahlb, 13 August 2019 - 02:58 PM.

#35 Thylacine

Posted 13 August 2019 - 03:18 PM

View PostChaotic Pogo, on 13 August 2019 - 02:40 PM, said:

is it bad form to just do a movie character? I can buy those costumes.

I'm trying to push Where's Wally. DS wants to go as an ant

#36 Thylacine

Posted 13 August 2019 - 03:22 PM

My DS is terrible at any self care stuff. He's 6 years old and still needs instructions on washing his hands. Every time. And washing his body, drying his body and brushing his teeth. He needs constant reminders to 'keep brushing' or he will just get distracted and start playing with his toothbrush. I don't even know how to teach him this stuff, if the message hasn't sunk in by now, when will it?

#37 Chaotic Pogo

Posted 13 August 2019 - 03:36 PM

Book cover lanyard to identify who it is:



Brilliant, doesn't mater how bad the costume is!

We are not very good teeth brushers at our house...

#38 frazzle

Posted 13 August 2019 - 05:42 PM

12 years and still can't get her to wipe her butt ... according to her its 'yuck, you do it mum' (!!!)
Teeth brushing - my husband made a rod for his own back by counting up to ten for each part of her mouth. Guess whose job it is to supervise her doing this task ...
And she is getting BO ...
So add teenager issues, ASD, intellectual and cognitive impairment, sensory issues = fun times for the next few years.

#39 Bethlehem Babe

Posted 13 August 2019 - 06:31 PM

My eldest is terrified of costumes (worn by others too) and hates dressing up. Always goes as someone normal. Last year was the 11th doctor.
But this year he’s requesting a superhero character so this will be interesting.

#40 Silverstreak

Posted 13 August 2019 - 07:02 PM

Thank you for the thread, I need a vent!

Yes yes to micromanaging, heaps of appointments, huge thought load, worrying about future independence and having to guide through your child's self care every single day or teeth won't get brushed etc. And good luck with wearing a costume, as masks are out, face paint is out, accessories in general are out and just finding standard clothes that fit tall DS can be a problem!

But actually it's neurotypical people in real life (not EB lol)  p*ssing me off at the moment. People who can't wait to ring me up to tell me about an autism documentary that I must watch that has all the answers, or recommend I watch some autism drama, because it's so entertaining (and ends up being too close to my life) or read some insightful blog about autism. I deal with autism every freaking day and sometimes I would like a break from it.

Or people in real life that bail me up to talk about concerns about their own child / relative etc and then, when I start talking specifics and pointing to resources, they freak out and back pedal and brush their concerns under the carpet again. Fine, don't take my advice that you asked for. And I'm not qualified to diagnose your child / relative, only a professional is qualified to do that. Sorry I didn't tell you what you wanted to hear!

Ahhhh, that feels better.

#41 Chaotic Pogo

Posted 13 August 2019 - 07:11 PM

Oh yes

I’m sure xyz non evidence based diet will fix all 3 of my kids problems. Not.

#42 Etcetera

Posted 13 August 2019 - 07:42 PM

Ugh teeth brushing... someone years ago told DS (who is 13) that decay doesn't exist so for years it has been a huge fight to get him to brush his teeth. And lately his 7yo sister has picked up on the attitude and is just as bad.

Bubba boo - we homeschool too and it's been hell lately. I've tried so many different tactics and it's all just gone to the dogs. Thank goodness we're out tomorrow so I get a bit of adult conversation.

#43 Acidulous Osprey

Posted 13 August 2019 - 07:56 PM

WRT NDIS, I'm going through the process of our 3 review meetings and I am being offered two year plans.  I've heard the horror stories of people being offered two year plans but only given one year's funding but our planner assured me that is not how they will do it.


#44 kadoodle

Posted 13 August 2019 - 08:04 PM

Oh ****, the micromanaging and thought load. I have no idea how DS1 is going to ever live independently. Apparently he has a high IQ. He’s also prone to leaving for school without shoes or with his cat. DS3 is being as difficult as he he possibly can, and DD2’s issues are driving me to a nervous breakdown.

#45 bubskitkat

Posted 13 August 2019 - 08:12 PM

I’m also sick of having to run around to so many therapists appointments, hoping like hell that the therapy will work and DS will have behavioural improvements.

Tonight he bit a baby in the waiting room at the therapists office as I was in the toilet. Yes I should have been watching him but I needed to pee. Sometimes even doing that is hard.

I’m sick of everyone judging me and my child. No I don’t need your advice unless you really know what your on about. Not all kids with autism are the same.

#46 Chaotic Pogo

Posted 13 August 2019 - 09:20 PM

View PostAcidulous Osprey, on 13 August 2019 - 07:56 PM, said:

WRT NDIS, I'm going through the process of our 3 review meetings and I am being offered two year plans.  I've heard the horror stories of people being offered two year plans but only given one year's funding but our planner assured me that is not how they will do it.


Yes, trying to work out if u have the energy to run yet another appeal.

I’m still waiting on a decision for a plan that started in 2017.

#47 Odd-1-Out

Posted 13 August 2019 - 09:25 PM

View PostFeral33, on 12 August 2019 - 08:37 PM, said:

I hate that therapies don't make any difference.

Completely agree 🙁

#48 123Tree

Posted 14 August 2019 - 07:37 AM

I hate that when I try to get my kids to practice their therapy or do their exercises they turn absolutely uncompliant and yell, go floppy, scream and basically make me question my will to live.

I am not doing this for myself people!!!!! I am trying to make your life easier.

I also hate it when the school casually suggests I try something without realising how much it costs. 😟

#49 Yippee-Ki-Yay

Posted 14 August 2019 - 07:44 AM

It is breaking my heart that DS18 is in the car in the driveway crying right now because once again he was disorganised and missed his train (we have returned home but he is currently refusing to leave the car). I hate that to get him prepared I have to end up yelling and being angry and even then days like today happen. My DS is a wonderful human being and I hate how his challenges make him feel.

#50 Grrrumbles

Posted 14 August 2019 - 09:50 AM

My son is targeting all his rage at (and on) me. 2 separate assessments this year have said his anxiety is low so what is causing all this?

I just cried in front of a room full of people when a friend asked me how I was. My life is just a mess.

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