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Actually
Casual Contributor

Finding safe informed supports

Hi. I am looking for supports and support workers for my son. Most of this involves filling in forms and companies not getting back to me. Or me making calls to service businesses and them either not answering the phone or taking a lot of details and promising to get back to me - and not ever in the 18 months I have been searching.

 

Through the friend of a friend who knew another support worker, I got a phone number of someone who turned out to have a disability services business, physically based (not just claiming to be) within range of where we live. I had an initial conversation with the business owner and we have an interview scheduled with myself and my son next week. 

 

The problem is that when I told him my son's diagnoses, he continued to blather on about how hard it is to get through to these people and find ways to communicate with them. I responded by saying that as I have the same diagnoses as my son, I find it very difficult to get any comprehensible response out of the majority of people and communicating with them is very difficult because everyday I am trying to connect with people who might as well be from another planet.

 

I need supports for my son because I want him to have exposure to people other than myself but most people other than myself are highly ignorant of and very inept at communicating with people like myself and my son. 

 

I have made the study of communication with "normal people" my life's work. I can't help that the rest of the population is full of people who do harm to minorities. I have worked in Disability for years and saw every day the harm that self-congratulating staff and professionals do to people with disabilities. I am scared, but with few actual, organised support staff available, am hoping that despite ignorance they can provide my son with the social connection and practice he so badly needs.

9 REPLIES 9

Re: Finding safe informed supports

Welcome to the forum @Actually 

 

I feel very similarly.  Making it my life's work to communicate.  Figuring out that a lot of so-called 'normal' people have a lot of issues but are not very aware of them.  

 

One problem being a mum dealing with disabilities is that it is hard to socialise our children.  Believe me I have wracked my brains and tried many things too.  Not had much success with professional services with my son.  They have made a total balls up of it IMO.  Still we have to keep trying no matter what.  There are some positives in our life.  Hope there are some in yours.

Re: Finding safe informed supports

Hi @Actually,

Welcome to the Forums. My name is FloatingFeather an I am one of the peer support workers at SANE. Thank you for sharing your story with us - I would like to think that posting our unique stories and lived experiences will aid in helping others recognise and hopefully better understand others from the perspective of a person(s) actually living it. I agree with you, I think a lot of times people just aren't educated or ignorant to other peoples's situations, particularly minority groups that may not get the recognition, understanding and voice that they deserve.

It sounds like a very challenging situation around finding support for your son. I would also imagine it would be very frustrating reaching out to organisations and not hearing back. My nephew (who is 25) has a mild intellectual disability and also struggles to find work and get the support and social connection he needs. Outside our family he doesn't really socialise or have friends - I think just being around people your own age can be so beneficial.

I wish I had some wisdom or insight to offer you around this but sadly I don't. I really hope some other forum members may be able to suggest / offer their lived experience around this.

I wish you and your son all the best - he's lucky to have such a proactive, wise and caring parent.

Warm wishes,

FloatingFeather  

PS.On an aside, if you want to directly chat with someone on the Forums use the @ symbol and then start typing their name directly after it. A dropdown box should appear, and you then select their name. This ensures that they are notified of any posts you mention them in.

Former-Member
Not applicable

Re: Finding safe informed supports

Hey @Actually 

 

Too often, people fall through the cracks when their needs are complex 😠

 

Does he have an NDIS plan? Do you have support hours in an NDIS plan? If so, there are a few agencies that may be able to help. I know that you can select the kind of support you would like to gain from these agencies and they can try and connect you with support workers who can tend to your support needs. Socialising is one of the most popular support needs in these agencies. There are people around who recognise the importance of socialisation. Possibly not some of the more rigid systems though. 

 

How old is your son? Sometimes community groups offer social programs specifically for people with disability that range from preschool to adulthood. Which state are you in? I might be able to find some links to get you started?

 

Hugs to you both xx 

 

 

Re: Finding safe informed supports

Thankyou. It is difficult reaching out when I don't see my disability experiences reflected in the people I see day to day. I have made friends which I value, but they are friends because of other shared values and experiences. My son seems to get by without any physical friends in his life, but I know how much the right people at the right time can help you turn your life around. My hope is that my son's world will expand a little with actual outside human contact.

Re: Finding safe informed supports

@FloatingFeather
The biggest problem for me is that the business owner did not listen when I said my son doesn't need support for his primary diagnosis, but for his secondary diagnoses. He just demonstrated techniques (all very damaging) that he would use with someone with my son's primary diagnosis.
This is so typical of my experience. Everyone assumes we have a low IQ, whereas for both of us it is extremely high, and that we are incapable of living fulfilling lives. When I put my name on my writing, the readers assume I am some university professor. When they meet me in public, they more often than not treat me as an idiot. This is just frustration boiling over here. Taking a break from being so on top of everything. 🙂

Re: Finding safe informed supports

Hey @Actually 

 

Thank you for posting here on the Formus!

 

I have experienced similar issues with people in the community treating me in less-than-ideal ways because of my mental health diagnosis and my gender identity. It can be really frustrating and leave me feeling isolated. I hope you feel like the Forums are a safe space and you can talk about experiences freely!

 

Great to have you as part of the community!

 

Regards,

RiverSeal

Re: Finding safe informed supports

@Actually A Gp told me about 12 years ago that I might have to keep shifting supports and to change them as I felt the need.  At the time there was a concept it was 'bad to doctor shop' going around, and I certainly always wanted to do the right thing and not be arrogant in my approach to services.  It really helped being told that by a health professional as he said our circumstances were VERY complex.  We had both done sciences at the same uni, so he had respect for me. 

 

Keep persevering but do not feel you always have to "settle".  The services at the moment are in flux so you never what will be around the corner ...

 

Some of the issues can be ignorance and some can be in limited training for the roles.

 

Either way I believe having some voice in a public arena like this, can be helpful as a form of personal expression and community education.

Re: Finding safe informed supports

@Appleblossom 

Hi. I can see that my most recent post has not been posted. One in which I cited one of the reasons that finding help of any quality is so hard.

 

Another is the advertising system and the assumption within the advertising industry that breadth is better that precision and focus. Leads to an enormous amount of searching and a great many very, unsatisfied customers! ( Yes, there probably is a gender bias in preferring precision and focus. But hey, there is almost half of the population who are consumers too!) To say nothing of the dis-education standards in the community. But I digress.

 

I noticed that you posted a criticism of "professionals" and yet your post was posted.

What other services or resources have you employed to help with "socialising" your children? Tactics that enabled them to interact with members of the community? Where government approved methods either fail or incur trauma, what are some of the resources you have found?

Re: Finding safe informed supports

Hi @Actually,

It must be so frustrating for you and your son. I guess it shows the ignorance of some people. It's bad (and not right) that this is your typical experience.

I would also imagine as a mum it would be heartbreaking to see your son coming up against this type of treatment as you have an insight into what your son is going through. As mums' we just want to fix things for our kids and to make everything as okay as it can be, especially in relation to things like prejudices and ignorance.

I really hope you posting on the Forums helps put a light on this situation and hopefully helps gain some much needed understanding.

Wishing you and your son all the best.

FloatingFeather 

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