The pressures on families with special needs

[JayneWonders]

I just heard of this situation, and thought there may be people who want to ponder or reflect on it.
Maybe it will trigger thoughts on how we can better support those with special needs children
or maybe, it will lead down avenues regarding how to support (from an overall society standpoint)

anyhow, here is the tragedy

Four people, including two children, found dead in Perth in suspected murder-suicide

WA police say both Mosman Park children had ‘significant health challenges’ and had been in contact with care services

www.theguardian.com

 

[KayTheCurler]

Certainly a tragedy. Likely more information will come out over time. I read on FB that the parents were stretched past their ability to cope. Providing caregiving 24/7 would break most of us.

I isn't just children involved in high care situations. What about spouses caring for sick partners? They too need support. How well do we as a society provide support? I'm recalling the elderly couple where the wife was the only caregiver for her partner with dementia. The system said he wasn't affected enough to have a bed in the care home. Wife basically couldn't take here eyes off him. A friend encouraged her to ignore the fact that he had hone outside naked, saying that someone would call the cops and maybe the system would wake up and provide some care. (They did).

 

[Mendalla]

What about spouses caring for sick partners? They too need support. How well do we as a society provide support?

When my role also encompassed a home support company as well as the home respiratory one where I still work, one of the programs they were providing workers for was respite care. Basically sending a worker in a couple days a week to give families a break. It was funded by community care back then. I'm out of that field now so not sure if it is still being funded, but I hope and imagine that it is. Of course, if you have enough money, you can actually pay privately for home support and respite care if you need more than community care covers. Home care is still not covered under the Canada Health Act so there's no restrictions on for-profit or private pay.

 

[Waterfall]

Sounds like the family had money. I know my sister and husband use group homes occasionally to get a break over weekends or even a week. Her husband is 15 years older than her at 80 and sick often, so she really does need a break sometimes. And she also enrolls her son into lots of activities through the week and has hired a young man from her church to take him out shopping or to the theatre. Her son is pretty social because of all of this.
She also does alot herself with caring for them both....plus she works full time in real estate and happens to be a very top producer at Royal LePage....so she also has money to do these things.....but she is always worried about if something happens to her, so she socks money away for her son and maybe husband in the future. It's a tough go.

 

[Luce NDs]

Sounds like the family had money. I know my sister and husband use group homes occasionally to get a break over weekends or even a week. Her husband is 15 years older than her at 80 and sick often, so she really does need a break sometimes. And she also enrolls her son into lots of activities through the week and has hired a young man from her church to take him out shopping or to the theatre. Her son is pretty social because of all of this.
She also does alot herself with caring for them both....plus she works full time in real estate and happens to be a very top producer at Royal LePage....so she also has money to do these things.....but she is always worried about if something happens to her, so she socks money away for her son and maybe husband in the future. It's a tough go.

You know how many cannot comprehend such a situation and claim they know it all! This world is a stage ...

 

[Kimmio Laughterlove]

It’s no excuse for what happened and it’s not a solution to caregiver burnout. If people want to be parents they have to prepare for difficult possibilities and if the help and support isn’t available they need to advocate for better systems for theirs and future families. Society needs to get better at being caring communities and prioritizing resources for care and help make it easier so people don’t get overwhelmed and burnt out, or neglected.

That’s what “should” happen if society is ever worthy of being called decent.

 

[Mrs.Anteater]

This doesn’t sound like a family where lack of finances reduced the amount of support services.

 

[Luce NDs]

Still there are people that cannot bear society because of individualization ... thus antisocial activities like the Russian advances ... towards no end ... that is the conflict continues as a Rueben (unguent, or un gentile-like) as we know know better way that ending matters ... thus same matter just goes on ... out there ... because out there is deeper ... more complex than known gardens. It is a real stretch ..

 

[Carolla]

the family had money

There is absolutely no doubt in my mind that money, and extended family/community supports make a difference. Government (ie communal financial) support is inadequate to meet complex needs today.

There is also no doubt that many families who are caregivers, often to/beyond the limits of human ability, struggle financially and personally - often more than their community might recognize. There can also be a tendency to hold these folks up as 'super human, inspirational,' etc which is quite damaging to them & serves to let the rest of us 'off the hook'.

Much of organized religion & churches discriminate against those with 'special needs' - spiritual abuse is a real thing & there are huge blindspots about the damage being done.

 

[Waterfall]

There is absolutely no doubt in my mind that money, and extended family/community supports make a difference. Government (ie communal financial) support is inadequate to meet complex needs today.

There is also no doubt that many families who are caregivers, often to/beyond the limits of human ability, struggle financially and personally - often more than their community might recognize. There can also be a tendency to hold these folks up as 'super human, inspirational,' etc which is quite damaging to them & serves to let the rest of us 'off the hook'.

Much of organized religion & churches discriminate against those with 'special needs' - spiritual abuse is a real thing & there are huge blindspots about the damage being done.

Absolutely agree with you there.

 

[Kimmio Laughterlove]

At the end of the day it was extremely selfish. The kids deserved care even if the parents couldn’t do it. Find another way don’t justify it. Society is responsible for letting it happen. Disabled people (drop the ‘special needs’ label) matter.

 

[Kimmio Laughterlove]

Disabled people are also dehumanized by spiritual abuse (the bible stories if taken literally as symbols of problems or failings - this has shaped society more than most are conscious of)
- while in many cases caregivers are undeservedly heralded within the dynamic.

What happened to disability ministry at UCCan? Does it still exist?

 

[paradox3]

Never a fan of the "special needs" designation myself. But it was certainly popular for a period of time.

 

[Mrs.Anteater]

Never a fan of the "special needs" designation myself. But it was certainly popular for a period of time.

I find “ special needs” as a term much nicer than “dis-ability”. Disability just says someone is not functioning as expected. “ Special needs” doesn’t judge about function , just states someone needs different conditions to function. Someone with diabetes or lactose intolerance would have special (dietary) needs.

 

[paradox3]

I see what you are saying @Mrs.Anteater. Various terms have made the rounds over the years and fallen out of favor.

As a diabetic, I don't consider that I have "special" dietary needs. I actually eat regular food. I just need to be mindful of the carb I consume and match it up with my insulin dose.

 

[Kimmio Laughterlove]

I find “ special needs” as a term much nicer than “dis-ability”. Disability just says someone is not functioning as expected. “ Special needs” doesn’t judge about function , just states someone needs different conditions to function. Someone with diabetes or lactose intolerance would have special (dietary) needs.

Disabled people chose it. It’s proactive and refers to the disabling factors imposed from outside the self, as imposed by society. It’s a reclaiming of the word. It’s the social model. We’ve been over this before so I don’t know why that needs explaining. Doesn’t matter what abled people prefer to hear. (If I sound a bit bothered that’s why)

Special needs dehumanizes, subjugates the person, focuses on them as needy, rather than placing the onus on society to remove barriers and accept different needs as all part of the human condition.

It’s not “nice” - I can tell you - to be a disabled person and be referred to as “special needs” no matter how nice abled people think it sounds. It’s stigmatizing and patronizing especially when disabled people have said what they prefer.

Identity language = disabled (most of disability community prefers)
People First = people with disabilities (people who have intellectual disabilities and their families fought for this term and prefer it)

 

[Kimmio Laughterlove]

I see what you are saying @Mrs.Anteater. Various terms have made the rounds over the years and fallen out of favor.

As a diabetic, I don't consider that I have "special" dietary needs. I actually eat regular food. I just need to be mindful of the carb I consume and match it up with my insulin dose.

Usually people say “dietary restrictions”, “dietary needs/ considerations”. It’s clear that it’s about diet not just some “special” quality that’s passively demeaning or othering. Special needs has never been a term for diet. If people started calling diabetics “special needs”, I think they’d be offended to have that term imposed on them. It might even be stigmatizing and therefore socially disabling.

 

[KayTheCurler]

My late brother (partially paralised and blind) preferred Handicapped as a descriptor. So did many of his friends in the UK. They said that word included everyone. Handicaps can be physical, mental, social etc..

 

[paradox3]

When my brother was a little boy my parents always described him as multi-handicapped. Not sure when we started to say he was disabled but that is the term I use now.

 

[Kimmio Laughterlove]

My late brother (partially paralised and blind) preferred Handicapped as a descriptor. So did many of his friends in the UK. They said that word included everyone. Handicaps can be physical, mental, social etc..

That’s what it was when I was a kid. I don’t mind that personally but I’ll go with the preferred descriptor of today.