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

[Princess Peach]

The only other thing that isn’t accounted for is how much harder our kids have to work to fit in with the school system, mine is absolutely exhausted come end of term.

[Eu_]

10 minutes ago, Princess Peach said:

The only other thing that isn’t accounted for is how much harder our kids have to work to fit in with the school system, mine is absolutely exhausted come end of term.

Yes!

so when people say why don’t you come for an appointment at 8am (as in leave home at 7am!) or do a late evening appointment they also don’t get it. I have an 11 year who is in bed before 8pm and often up at 7.30am. He doesn’t have the energy and stamina to have extended days. And he’ll be unmediated if you get him early or late.

how is it that people working with children with disabilities can be so clueless! 

[MsLaurie]

1 hour ago, Princess Peach said:

The only other thing that isn’t accounted for is how much harder our kids have to work to fit in with the school system, mine is absolutely exhausted come end of term.

It’s one of the things that makes me feel so sorry for Miss8, and so cranky at the very structured and inflexible curriculum- she’s working bloody hard all the time, only to always be behind and struggling. 

[Lees75]

On 28/9/2023 at 5:19 AM, IamtheMumma said:

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.

Yes, DD16 uses them at school all the time and loves them. She bought the engage level ones

1 hour ago, Princess Peach said:

The only other thing that isn’t accounted for is how much harder our kids have to work to fit in with the school system, mine is absolutely exhausted come end of term.

I have my 16 year old daughter, currently snuggled up on my shoulder, after working hard all day to get her Maths Methods assignment in. Bring on the school holidays!!!!!!
 

But, we have also been celebrating, looking back at this time last year when we were staring down the barrel of home schooling. We were talking about it on the way to school this morning, and she doesn’t even remember that we looked at alternative schooling options. She only remembers how unwell she was. And now she is happily planning her Yr 12, aiming to get straight As. 

[Prancer]

So relate to this appointment thing.  I work very part time and my youngest is 12.  People just don’t get it.  So much to fit in.  And you can’t do too much at once.  And then due to all the extra stress in my life I feel I need some down time too.

I am struggling with uneven comparisons.  My kid has a learning disability around writing.  It is at the stage where not only can the teacher not read their writing, but my kid can’t neither.  But when I tell other people this and sometimes show an example of my kid’s writing, I get these comments that their kid’s writing is like my kid’s writing.  Really?  If the teacher can’t read it and neither can the writer then you have got a  pretty big problem at school and it would be odd that the school has not flagged it or done anything.  My kid with a high IQ barely passes because of the focus on writing, so not sure how their kid is getting through school.  
 

My teenager has a thing for shoes.  Not buying them, but I think cleaning them up using tweezers to get dirt out of the soles.  If we are missing shoes, we know to check his bedroom.  Caught him in the laundry looking guilty tonight, and he has been retrieving gum boots outside to smuggle into his bedroom. Anyone else has this?  Is it related to anything?

Edited September 29, 2023 by Prancer

[Impi]

Hi @Prancer,

It could be a thing were picking the stones out of the treads gives satisfaction, I have found a picking stone good for DS who can't help picking at things.

https://kaikofidgets.com/products/the-original-pick-n-peel-stone-made-in-usa?variant=39916891799640&currency=AUD&utm_content=sag_organic&utm_campaign=sag_organic&utm_source=google&utm_medium=shopping&tw_source=google&tw_adid=&tw_campaign=17916256947&gclid=Cj0KCQjwjt-oBhDKARIsABVRB0zU943U49uQ_MLAtUkQddjacnsSfwxvlddpt6RA7FwqctSEQF2EECwaAtPrEALw_wcB

DS's psychologist says it's the best fidget she has seen and we had the best therapy session ever using it.

[Prancer]

Thanks @Impi, looks interesting.  Last school holidays I bought DS a heap of fidgets for school and it helped.  I figure the show thing is a good mindfulness activity plus we get clean shoes lol.

[El Segundo]

Hey team. 

Those stones look good...

I'm looking for help with my 11yo getting more active. I was thinking to book him to see a podiatrist and then also an exercise physio type person but is an OT better? DS has ASD and is very anti sport, has awkward gait and tires very easily. Not sure how best to approach the problem. Anything worked for your people? I was thinking of an outcome of a gym program we could do together but open to other things...

[Eu_]

@El Segundo

My DS sounds similar. We see an orthotist for custom orthotics and physio.

Physio makes recommendations for activities between sessions. And we do other things to engage in physical activity.  

[Moomintroll]

1 hour ago, El Segundo said:

Hey team. 

Those stones look good...

I'm looking for help with my 11yo getting more active. I was thinking to book him to see a podiatrist and then also an exercise physio type person but is an OT better? DS has ASD and is very anti sport, has awkward gait and tires very easily. Not sure how best to approach the problem. Anything worked for your people? I was thinking of an outcome of a gym program we could do together but open to other things...

I'd go for a physio or exercise physiologist over an OT. Although it may be just about you, they and him coming up with some activity suggestions for him to try out. 

[MsLaurie]

Night before school goes back and Miss8 has completely lost the plot. She HATES school, she’s “not a student anymore”, school takes her away from her family and she can’t just be herself, she WON’T go to school in the morning…

*sigh* I thought we were on a more happy path at school last term but apparently quiet days home doing puzzles and drawing are vastly preferred. Fingers crossed things seem happier in the morning.

[Prancer]

Oh @MsLaurie that sounds hard.  But gee, what an articulate child you have!  She has made some pretty good arguments.  I hope it all looks better in the morning for you too.

[MsLaurie]

Well she got to school. Two minutes before the second bell. And apologised on the walk from the car to the gate for her behaviour. So we’ll call it a win.

Now having an extra cuppa to recuperate before I even consider getting anything sorted for the day!

[Not Escapin Xmas]

25 minutes ago, MsLaurie said:

Well she got to school. Two minutes before the second bell. And apologised on the walk from the car to the gate for her behaviour. So we’ll call it a win.

Now having an extra cuppa to recuperate before I even consider getting anything sorted for the day!

It’s hilarious/awful how for kids, they decide it’s ok and that’s that, whereas for the poor parents we are still running on pure adrenaline 20 minutes later!!

[Too tired to care]

On 29/09/2023 at 10:00 PM, Prancer said:

So relate to this appointment thing.  I work very part time and my youngest is 12.  People just don’t get it.  So much to fit in.  And you can’t do too much at once.  And then due to all the extra stress in my life I feel I need some down time too.

I am struggling with uneven comparisons.  My kid has a learning disability around writing.  It is at the stage where not only can the teacher not read their writing, but my kid can’t neither.  But when I tell other people this and sometimes show an example of my kid’s writing, I get these comments that their kid’s writing is like my kid’s writing.  Really?  If the teacher can’t read it and neither can the writer then you have got a  pretty big problem at school and it would be odd that the school has not flagged it or done anything.  My kid with a high IQ barely passes because of the focus on writing, so not sure how their kid is getting through school.  
 

Our OT has been able to arrange for my son to use his iPad and type more due to his poor writing. He has hypermobility and poor muscle tone along with other issues and being able to type is so much better for him. Not sure how your school would take it , but it can't hurt to ask the OT for a formal writing assessment and to recommend typing as a way forward while you strengthen his writing skills. 

[Phillipa Crawford]

28 minutes ago, Not Escapin Xmas said:

It’s hilarious/awful how for kids, they decide it’s ok and that’s that, whereas for the poor parents we are still running on pure adrenaline 20 minutes later!!

My DD used to stress out before things like going back to school, a school concert or sports day - anything that was a change from the norm.
Then when I was a frazzled mess as I had been her emotional punching bag she suddenly became quite calm and went off happily. i guess I had fulfilled my role

[Moomintroll]

I was wondering what others think about the recommendation of the Disability Royal Commission to close down all special schools and also special classes. Is that something we can talk about here? I know there are not many special school parents in this group but there may be a few. Do you have thoughts about that recommendation? 

I have a lot of my own but will hold on to them unless others are interested to discuss the topic. 

[Eu_]

@Moomintroll

Im not a mod but I dont see why we cant respectfully and thoughtfully discuss the disability royal.commissiom and recommendations,  including around special schools. 

[Paddlepop]

@Moomintroll I think closing them down is a bloody awful idea. I’ve known a few parents who have had their child transfer into a special school after a very unhappy and stressful time at their local school. The children have thrived once they’re in the special school. So much happier and less stressed, the children have been safe due to higher supervision, and the parents have been so grateful to have their child at a school that suits the child’s needs. The special schools also pick the children up from home on a bus and transport them there, eliminating the school drop off and pick up for the parents. I haven’t read the report so I don’t know why the RC have come to the conclusion. 

[Fruitmincepies]

Absolutely fine to discuss from a mod pov - FMP 

[MsLaurie]

I gather the recommendation comes from a perspective of institutions based on having disabilities “separate” have had some awful stories of abusive behaviours come out. But mainstream schools have hardly been bastions of reputable behaviours over the years either…

[LemonMyrtle]

1 hour ago, Moomintroll said:

I was wondering what others think about the recommendation of the Disability Royal Commission to close down all special schools and also special classes. Is that something we can talk about here? I know there are not many special school parents in this group but there may be a few. Do you have thoughts about that recommendation? 

I have a lot of my own but will hold on to them unless others are interested to discuss the topic. 

well, technically they were split, three vs three, on shutting down schools. 
 

“The remaining three commissioners did not support the shutting down of special schools. Instead they suggest stronger relationships be formed between mainstream and special schools, including for the mixing of classes where practical.
However all commissioners agreed the status quo cannot remain and that segregation in the schooling of students with disability should end.”

im with these guys. Don’t take away options from parents. Don’t expect all public schools to be able to cater to every disability (cause they won’t be able to). Instead, fix the problems. Make special schools better.
 

https://amp.abc.net.au/article/102911410

[Princess Peach]

1 hour ago, Moomintroll said:

I was wondering what others think about the recommendation of the Disability Royal Commission to close down all special schools and also special classes. Is that something we can talk about here? I know there are not many special school parents in this group but there may be a few. Do you have thoughts about that recommendation? 

I have a lot of my own but will hold on to them unless others are interested to discuss the topic. 

Oh that would be an absolutely terrible idea. State schools can’t accommodate the needs of a kid with average intelligence & a learning disability, how on earth are they going to accommodate kids who are visually or hearing impaired & need books in braille or Auslan. My own kid isn’t getting the minimal aid time he needs (a reader & scribe for assessments) because the behavoural challenged kids are getting priority with their time.

Also a lot of state schools are not equipped to deal with kids who are not toilet trained or have serious mobility issues.

[Not Escapin Xmas]

13 minutes ago, Princess Peach said:

Also a lot of state schools are not equipped to deal with kids who are not toilet trained or have serious mobility issues.

Or violence. Which was certainly in play with the 2 kids I know who went to special schools. 

[Eu_]

I think part of the argument is that once segregated, the segregation continues, even into adulthood. And people with disabilities who attended mainstream schools are more likely to enter the workforce. 

In my area though, special schools are for students with the highest support needs eg severe intellectual disability. So I'm not sure what work people with that level of support need (eg need help for all personal care tasks, minimal communication etc ) would do.