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

[MsLaurie]

I can see rebuilding or retrofitting to make spaces accommodating of physical disabilities reasonably do-able, although incredibly expensive…. But I don’t know how you make a mainstream school - even with billions of dollars- a place that can work comfortably for kids with major sensory challenges, who struggle with bright lights or noise or whatever. But perhaps I’m not thinking creatively enough…

[Saphy]

5 hours ago, Paddlepop said:

@MsLaurie No, not two decades. All commissioners agreed on no new enrolments at special schools from 2032. 

I think it was 2 decades until the schools will close, but no new enrolments in 9 years. Fairly decent lead times if funding is made available to support the recs (that is a pretty big if….)

[Saphy]

5 hours ago, Moomintroll said:

Do you think that standard schools can actually meet the needs of every type of child? And I'm not just thinking of disability here, I'm thinking of the myriad of other ways children differ - in personality,  skills, interests,  preferences,  family values etc. I'm also thinking of kids who refuse school or disengage from school. 

I don't think anyone should have to accept only one option actually.  I think we need abundant diversity and innovation,  as well as choice. 

Can’t we have (abundant) diversity and innovation in mainstream govt schools though? If people are open to the concept and funding (buildings/equipment/training) is at an appropriate level, then it is *possible*. 

[DaLittleEd]

I have a couple of thoughts around this. First, there is no way the government is going to adequately fund this so that students currently accessing support units/schools (what we call them in WA) will be able to access the same level of support in a mainstream school. Is the government going to build hydrotherapy pools, specialist toilets/changing areas, accessible playgrounds at every single school? No of course not. So then children who need those things will be often without them. I doubt the government would even spend the money to fence all public schools...

Secondly, one benefit of support units/schools is that students are with their peers. Some parents I know with kids in support schools say it's the first time their child has been properly included. In mainstream schools their kids were "included" to some degree, but upon moving to the support school their kids had friends and were invited to birthdays for the first time.

My preferred model (and what happened at my school in the 90s) was a support unit in a mainstream school. The support unit kids attended all mainstream assemblies and events, and had the choice of taking lunch break in their own playground or mainstream. They also attended various classes with mainstream - this varied by student needs, some students were in mainstream most of the day, but needed access to the support unit for example for toileting, some students spent most of the day in the support unit. Back then about every 4th primary school had a support unit. These days they are few and far between.

I don't think taking away choice, especially given the school system is dreadfully underfunded already, is going to do anyone favours.

 

[Eu_]

I agree that for those with the highest support needs it seems unlikely they can be provided with the same level of support in a mainstream setting as compared to a special school. The special school closest to me has a hydrotherapy pool  they have a wheelchair friendly liberty swing, the whole school was purpose built. 

There's no way hydrotherapy pools, liberty swings, hoists and accessible change rooms etc are going to be built in many many more schools. 

I think for the kids who have mild disability mainstream could clearly be doing better and ought to meet their needs, for those with moderate level of disability it's probably less clear and quite individual. 

I think the points that have been raised by others are valid and important eg the sense of community that you can find in special schools or special Ed classes  eg other people who know the challenges of NDIS or who really get your situation. And the sense of connectedness the child can feel by meeting people 'like them'.- what ever that might mean eg with hearing aids who are Autistic, etc and give them the chance to be picked by their peers to be on a team or to be able to access the work in a similar way to peers. 

There's a non government school near me that has what appear to be special Ed classes, as the classes have the same principal as mainstream, they do same activities and integrate but they call it a special school. I don't know why but wonder if in calling it a special school they can really articulate who they will and won't accept, as they have a narrow ish enrolment criteria.

Anyway  i I do think the whole discussion is very important.  

 

[Wattle]

In a perfect world it would be good to have special schools located next to general schools, so the kids have more awareness of each other and transition can be tested if desired.

but that is a perfect world solution for new school builds. With the current situation closing down special schools would not go well.

 

[Wattle]

Most schools in my area are overrun and demountables are using up the outdoor space. There is no room in Many schools to build Ramps and new play equipment, let alone pools! 
governments need to actually allocate land and funds to build new schools, not just keep expanding the schools they have on smallish plots of land.

[Elmo]

I think closing special schools really wouldn't be a move forward, for the many many reason already mentioned.

They exist now for a reason, and that reason isn't disappearing or becoming less? To better provide for the needs of children with moderate to severe disability. From my experience, children with mild disability (ASD 1/2, ADHD etc) are encouraged to go to mainstream schools unless there is of course other behavioural/sensory issues at play.

I think it would be a shame to take these specialist supports away from those that need it most? There is just no way mainstream is ever going to be able to cope with the diverse & complex needs of severe disability, behavioural & sensory issues....they can barely cope with the behaviour of NT kids at schools these days. I think we'd end up with majority of teachers walking off the job! I can't see the government putting every teacher nationally through intensive SN training.

Special units within schools is ideal - There is one in a primary near us - but they don't have much space so don't provide pools/handling equipment/etc. It's basically just a couple of classrooms with extra fencing and it's own little playground.

I haven't read all the info on this, but is it a confirmed "going to happen" or just a "maybe"?

[Moomintroll]

3 minutes ago, Elmo said:

 

I haven't read all the info on this, but is it a confirmed "going to happen" or just a "maybe"?

It's just a recommendation from a Royal Commission.  It would be up to state governments to decide how to respond. 

The thing that bothers me is that the discussion from proponents is so heavy on slogans and allegations of abusive environments,  but so light (ie completely silent) on either the complexities,  or the details , or other forms of rights, such as the right to an environment that feels safe for you or the right to be taught in a way you can understand.  

Jordan Steele-John literally stated the other night that children currently attending special schools were experiencing abuse and neglect,  just by being there. 

[Moomintroll]

Also on this topic,  some people talk a lot about teacher training. But giving teachers more training does not make them able to do multiple different things at the same time. You can only provide one level of instruction at any one time. I think some people think teachers lay out "work", kids "get on with their work " and teachers wander around the room assisting different kids who need different help. This is not how it works.  Teachers spend the majority of their time actively instructing the whole group. And with more emphasis on meeting Naplan benchmarks etc, there is increasing emphasis on teacher led explicit instruction.  A teacher cannot simultaneously instruct two or more groups at the same time. We need more than just magical highly trained teachers.  We need enough teachers and enough spaces and other resources to teach everyone at the level and pace which allows them to learn.  

[Panda]

Does anyone here have a kid who didnt have the tools to regulate their emotions or reactions and was able to learn how to do this to an extent?

DD will hit herself in the head whenever she gets something wrong / a toy she's building falls apart.

She will say things and has been known to bite, spit, hit (thankfully only household members never) and then will feel so horribly bad and will cry for 2 hours about how bad she feels for doing it.

I can't think of a starting point to teach skills to help her with this.

So far OT/Psych have done things like deep breathing but it was hard and is still hard to do that in the moment.. its literally a second..impulsive reaction to something bad.

I have taught DD to work through actual stressors and it has been really good for her anxiety...eg "I'm anxious about the teacher being away what can I do" - I can do these things  or I have a problem how can we solve it. She has started flipping what ifs in a positive way and the what ifs use to really drive her anxiety through the wall.

How do we do this with reactions where she is either hurting herself or others?

 

 

[Panda]

@Moomintroll Wouldn't it be great if each classroom had multiple teachers and a teachers aide? If each school had an OT and a speechie with sessions across the week.. just like a kid can go to ESL 2-3 times per week, a kid can go to a speech therapist during school hours.  A kid who does PE , can instead maybe go an see their OT and they can do similar things but modified versions.  What if each school also had a psychologist. I see benefits for all of these things for NT kids too.

 

[Moomintroll]

2 minutes ago, Pandobox said:

Does anyone here have a kid who didnt have the tools to regulate their emotions or reactions and was able to learn how to do this to an extent?

DD will hit herself in the head whenever she gets something wrong / a toy she's building falls apart.

She will say things and has been known to bite, spit, hit (thankfully only household members never) and then will feel so horribly bad and will cry for 2 hours about how bad she feels for doing it.

I can't think of a starting point to teach skills to help her with this.

So far OT/Psych have done things like deep breathing but it was hard and is still hard to do that in the moment.. its literally a second..impulsive reaction to something bad.

I have taught DD to work through actual stressors and it has been really good for her anxiety...eg "I'm anxious about the teacher being away what can I do" - I can do these things  or I have a problem how can we solve it. She has started flipping what ifs in a positive way and the what ifs use to really drive her anxiety through the wall.

How do we do this with reactions where she is either hurting herself or others?

 

 

Oh yes I have seen many children make improvements with this. But it does seem to be a maturation process,  something which grows over time (possibly years). The teaching you do at this young age is good, but it doesn't stop the split second reaction issue. Maturity solves that, and when greater brain maturity starts to kick in, all the learning comes in handy.

One thing that can help is exposure to very mild stress ors that the child is able to manage. But managing their environment for them to minimise exposure to stress ors that you know are going to be too much for them.

I also think no matter how well you manage everything,  sometimes you're going to have a fail and an over reaction or meltdown.  But if they are happening often it's time to look at reducing the stressors. But don't expect it to never happen.

Also reassure your daughter her brain is growing and will get better all the time at managing her feelings. 

[Kiwi Bicycle]

8 minutes ago, Pandobox said:

@Moomintroll Wouldn't it be great if each classroom had multiple teachers and a teachers aide? If each school had an OT and a speechie with sessions across the week.. just like a kid can go to ESL 2-3 times per week, a kid can go to a speech therapist during school hours.  A kid who does PE , can instead maybe go an see their OT and they can do similar things but modified versions.  What if each school also had a psychologist. I see benefits for all of these things for NT kids too.

 

The Victorian government is putting a social worker at all primary schools. However the roll out is slow, because of funding. So our school isn't eligible until 2026. There's also a lack of social workers " trained" to Australian standards. I say this as a my friend who is a British degree qualified and worked in the field social worker has ended up having to take a job as an activities co- ordinator at a retirement home. It isn't using her skills, but she was told her qualifications are not valid here. She struggled to find work.

Money and HR are issues.

[Jolly_F]

33 minutes ago, Pandobox said:

@Moomintroll Wouldn't it be great if each classroom had multiple teachers and a teachers aide? If each school had an OT and a speechie with sessions across the week.. just like a kid can go to ESL 2-3 times per week, a kid can go to a speech therapist during school hours.  A kid who does PE , can instead maybe go an see their OT and they can do similar things but modified versions.  What if each school also had a psychologist. I see benefits for all of these things for NT kids too.

 

This is what I imagine when we talk of inclusive schools. The 1 teacher per classroom is crap even with NT kids because even NT kids have diverse learning needs and many are being failed by the current system but they don’t have options. Inclusive schools would benefit everyone, they would offer everything they could and every kid would have access to whatever they needed to help them. 

[Lees75]

23 hours ago, MoukMouk said:

What do the commissioners suggest instead of group homes? How do they think someone with a severe intellectual disability who is non verbal and can’t dress themselves is magically going to be able to cope with life independently? I absolutely applaud many of their suggestions but the distress I’m seeing in many parents is awful. 

Thankfully, with the roll out of NDIS, we already have the models in place to replace group homes. They have already gone out of fashion, thankfully, and all it would take to see them eradicated altogether, would be a change of attitude in NDIS planners that shared supports provided “value for money.” 

I have completed or supervised 100s, if not a thousand, NDIS Home and Living assessments (the latest terminology) and have only once recommended a group home for someone, and that was because it was their preference. 

A lot of the SDA (specialist disability accommodation) group homes that were built are not being utilized because participants are choosing to live on their own, or with one housemate. NDIS have recently changed the funding model to enable families to live in the group homes buildings. 

[DaLittleEd]

@Pandobox yes, I second what @Moomintroll said. What really helped DD with this was time and maturity. Also, getting her out and about as much as possible, letting her deal with things and working through them with her at the time. 

 

[Fruitmincepies]

41 minutes ago, Jolly_F said:

This is what I imagine when we talk of inclusive schools. The 1 teacher per classroom is crap even with NT kids because even NT kids have diverse learning needs and many are being failed by the current system but they don’t have options. Inclusive schools would benefit everyone, they would offer everything they could and every kid would have access to whatever they needed to help them. 

DD’s classroom has 2 full time aides in the room (due to kids with high needs) and having those extra adults in the room is amazing, it really does make a difference. 

[MsLaurie]

If the average class size was more like 15 students than 25, teachers and schools could accommodate different needs more readily. But that too brings “built environment” complexities, as a in a school of say 400 kids that moves you from needing 16 classrooms and teachers to needing 26. 

[Princess Peach]

Most of the primary schools near me have 800 plus kids, high schools are sitting around the 1,200 - smaller classes would be amazing, but logistical crazy. 

we need to start training a lot more teachers as well as a public campaign to ensure teachers are being respected by kid’s & parents alike. 
 

Side vent - I have to send an email to the classroom teacher reminding them of my kid’s accomodations. I hate writing these emails.

[LemonMyrtle]

I think this opinion piece has some really good points in it. Written by someone with a disabled child. For them, special school want exclusionary, it was a way for their child to be included in things. 

https://www.theage.com.au/national/segregation-no-for-our-family-david-s-special-school-met-all-his-needs-20231003-p5e9ag.html

[Kiwi Bicycle]

4 minutes ago, LemonMyrtle said:

I think this opinion piece has some really good points in it. Written by someone with a disabled child. For them, special school want exclusionary, it was a way for their child to be included in things. 

https://www.theage.com.au/national/segregation-no-for-our-family-david-s-special-school-met-all-his-needs-20231003-p5e9ag.html

Once again, it's  a case of one size does not fit all and that families should have a choice on what is best for their loved ones. Not options taken away from them.

[Princess Peach]

17 minutes ago, LemonMyrtle said:

I think this opinion piece has some really good points in it. Written by someone with a disabled child. For them, special school want exclusionary, it was a way for their child to be included in things. 

https://www.theage.com.au/national/segregation-no-for-our-family-david-s-special-school-met-all-his-needs-20231003-p5e9ag.html

That’s a really well written article.

[MoukMouk]

3 hours ago, Lees75 said:

Thankfully, with the roll out of NDIS, we already have the models in place to replace group homes. They have already gone out of fashion, thankfully, and all it would take to see them eradicated altogether, would be a change of attitude in NDIS planners that shared supports provided “value for money.” 

I have completed or supervised 100s, if not a thousand, NDIS Home and Living assessments (the latest terminology) and have only once recommended a group home for someone, and that was because it was their preference. 

A lot of the SDA (specialist disability accommodation) group homes that were built are not being utilized because participants are choosing to live on their own, or with one housemate. NDIS have recently changed the funding model to enable families to live in the group homes buildings. 

Does that mean that people live by themselves with live in carers? I've recently been navigating this for a family member, and they are loving living with three other people in a lovely big home with carers. Much nicer than been lonely. I also like that there are four families keeping an eye on the place for their children/siblings. I completely get that it wouldn't suit everyone, but when housing is in such high demand in Sydney it also seems to make sense to have people share. 

[Beanette]

We went to the paed today for a review of DS' rit medication, he's only been taking it for three weeks and he's lost 900g! He's very tall and skinny, and extremely fussy with food so it's not easy to sneak extra calories into him. I was thinking of buying a blender to make some peanut butter heavy smoothies that I think he would tolerate.