Parents and carers of children with special needs chat thread #3

[Darryl]

New thread time! Link to previous thread: 

 

 

[Jolly_F]

Gold 

[LemonMyrtle]

silver

[Eu_]

I've never posted in a thread so early! 

[CrankyM]

Posting to find it again. 

[Sancti-claws]

Ditto crankym.

The swimming lessons conversation reminded me of one of our early ignored warnings of the unique child we had.

[CrankyM]

Yah! I finally managed to convince the kids to get a freaking haircut. It would be fine but the oldest kid keeps insisting on this cut that is terrible when it grows out. I’m fine with you going 4-5 months between cuts but at least get a cut that will grow out without having one section that just is flopping all over the place and looks awful. And then take to it with scissors yourself. 

[Elfie34]

https://www.abc.net.au/news/2023-09-26/disability-advocates-tighter-regulation-calls-ndis-providers/102900200
 

erggh. My ds went to a social skills class at irabina when he was younger probably 6 years ago. He didn’t have ‘severe behaviours’ or whatever this now banned program was working on (and I know irabina did ABA programs which we didn’t do) but still makes me regret that I sent him here. To be honest he was very young when we did social skills classes and in hindsight I wouldnt do it again as I see it now as just a way of masking and fitting in with NT’s. 

[MsLaurie]

So today Miss8 - she of significant language and speech issues- insisted on DH buying her a book of Mandarin words and is watching ABC kids in Mandarin. We don’t speak Mandarin

She’s also decided today to “write 1000 poems like Emily Dickinson” (thanks Peg + Cat) and has already done 8 complete with illustrations… uh okay?!? 

School holidays of long days with her thoughts taking her in some intriguing directions.

[Princess Peach]

52 minutes ago, MsLaurie said:

So today Miss8 - she of significant language and speech issues- insisted on DH buying her a book of Mandarin words and is watching ABC kids in Mandarin. We don’t speak Mandarin

She’s also decided today to “write 1000 poems like Emily Dickinson” (thanks Peg + Cat) and has already done 8 complete with illustrations… uh okay?!? 

School holidays of long days with her thoughts taking her in some intriguing directions.

In a tangent, I do love Peg+Cat - some of the mathematical concepts they cover blow my mind.

[Pepper]

This is a bit of a long shot, but you never know, anyone got a sensory kid who loves karate?
And by any chance do they find the belt “too annoying” and have you found a way to make it less annoying but still look for the most part like the others? I was wondering if there is some way I can make it a bit stretchy and the knot a bit less bulky 

[Panda]

@Pepper My DD did taekwando for a bit and the belt did annoy her. She would take it off and it was no drama as the uniforms were tshirt and pants and I think the belt was just decorative. If its annoying, id ask for them to find a way so he doesn't have to wear it..it seems like an easy enough adjustment.. but my DD was in a preschool group and they were relaxed.

[Panda]

@Elfie34  When I was new to the autism world, I came across ABA therapy and without knowing much about it made a few enquiries. There are a few in Melbourne and I do think they need investigation purely based on the nature of the treatment...(intensive and no parents allowed on site) Irabina was one of them.
They all request a minimum of 15 hours per week (intensive) but the more disturbing part is that you're not there. So that was a no from me before I had even read up on the controversies. I am pro therapy. I don't see it as teaching ND to mask/be typical - I see it as skill building but I think every parent should always follow the kids lead.. if the kid is happy doing it and it seems to help then go for it. If the kid is not happy, something needs to change. In any case, there is no way I would say yes to any therapy where I wasn't present. 

 

[Lees75]

I kept DD16 home from school today. They were taking the Yr 11 kids to a day-long excursion with the RAA, where they talk about road accidents, responsible driving, etc. DD16, who is turning 17 next week, has so much anxiety around getting her licence, and has only just now decided she wants to try for her Ls in the school holidays. Also, after witnessing a car accident first hand, caused by a P-plater, and being first on scene, she understands the serious consequences of driving. I emailed the school a few weeks ago and told them I thought it was awesome that they were taking the kids, but that it wasn't appropriate for DD16. Her psych teacher just happens to be the Yr 11 coordinator, and she was fine with it and said it was a wise decision. 

[Fruitmincepies]

12 hours ago, Pepper said:

This is a bit of a long shot, but you never know, anyone got a sensory kid who loves karate?
And by any chance do they find the belt “too annoying” and have you found a way to make it less annoying but still look for the most part like the others? I was wondering if there is some way I can make it a bit stretchy and the knot a bit less bulky 

I’ve got a sensory kid who love karate, and luckily we’ve had no issues with the belt. I think our karate school would be fine with a child not wearing the belt if it was the difference between them coming to class/being able to focus and not - but the class does seem to have a large percentage of kids who are more quirky. DD does much prefer it when her teacher does up her belt rather than me, but I think DD likes the feeling of the belt done tight. 

[Lizzybirdsworth]

I took ds3 bowling and mini golfing yesterday. We had lots of fun. He lost both times and I could see he was abit upset during bowling that he wasn’t hitting many pins but he handled it well and we were high 5ing each other and I was laughing at myself making mistakes. Then we came home and played minecraft uno and it was just a lovely day. He kept saying he was having so much fun with me. Now I know it would have been a totally different situation if ds2 had come as well or even a friend. But we are working on being a good sport

[IamtheMumma]

Has anyone used those "loop" ear buds for their kid? I'm wondering if they might help DS when he gets overstimulated. The louder his environment gets, the less he's able to maintain some regulation.

[Panda]

@IamtheMumma I have tried them for myself to block out DH snoring. They are good and they come with all the sizes so you can pick the size that suits you.

 

EVERYONE!!!!!! DD has mastered the monkey bars...and not just any monkey bars but the ones at her future school. We have been going over the school holidays and working on it.

[Elfie34]

1 hour ago, Pandobox said:

@IamtheMumma I have tried them for myself to block out DH snoring. They are good and they come with all the sizes so you can pick the size that suits you.

 

EVERYONE!!!!!! DD has mastered the monkey bars...and not just any monkey bars but the ones at her future school. We have been going over the school holidays and working on it.

Does it work for the snoring? I am the snorer in my house and normal ear plugs don’t normally work for dh.

[LemonMyrtle]

1 hour ago, Elfie34 said:

Does it work for the snoring? I am the snorer in my house and normal ear plugs don’t normally work for dh.

I have loops “quiet” and they’re not that quiet. They block some noise, but probably not a snoring level of noise. Better off with foam earplugs for that. 

[Panda]

@Elfie34 no.. I needed something that allowed me to still hear DD but block out DH a little. I couldn't relax with proper plugs as I was too worried I wouldn't be able to hear her.

[Wattle]

Ear loops work really well for my child at school and they are way more subtle than big headphones

[Bethlehem]

No advice on eat loops but the teen often wears earbuds to help. 
 

Those little comments 

Co-worker: “so when the little kid gets bigger, will you work full time?” 
Me: “I don’t know. He has disabilities and needs a lot of support and therapies that I do on those days”

them: “oh, I guess if you don’t have to work full time why would you?” 
 

Me: “….”

They don’t get it. 
Yes I’m lucky we aren’t on the bread line but at the same time it’s not for a lack wanting to work full time, it’s the fact that I need that one day to do all the other things that need to be done cause they can’t do it. Ndis meetings and paperwork. Therapy. All the little things that have to happen cause they can’t deal if they dont

[Eu_]

@Bethlehem

I get it!

I read somewhere the yearly cost of a having a child with an autism diagnosis is huge (can't remember exact figures that was stated) a big part of it is loss of income...

I'm trying to book the two appointments required for DS orthotics.  They insist the appointments are exactly 3 weeks apart. They think it's only 2 appointments and why can't I make this work easily. Well because it's 2 appointments every 6 months one hours away, along with 2 paed appointments each year also an hour eaxh way, along with 2 ophthalmologist appointments also an hour each way along with physio who doesn't do school visits etc etc. When do they think I turn up to work! 

[MsLaurie]

Yeah I’m due to go back to full time next year as Miss4 will be at school. But I can’t see Miss8 coping with extra after school care, or how we then wrangle getting to speech therapy on time. And of course the audiologist, paediatrician, psychologist appointments. Perhaps I could go up to 0.9 instead of my current 0.8 but I don’t know. Maybe I’ll look at it again after six months or so.