My Child’s Diagnosis Didn’t Give Me Depression! The SEN System Did That!

seventhvoice:

“You think a diagnosis is going to change things. The right help and support will come and be handed to you on a plate… Well dream on, it most certainly won’t! I learnt almost instantly, that for some, my sons diagnosis wasn’t worth the paper it was written on.”

 

Originally posted on A boy with Asperger's:

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Its funny, Just recently I found myself engaged in conversation With a fellow parent at my daughter’s school. We were discussing depression, a subject I won’t hide from!

This parent reads my blog and is aware that depression has sometimes been a part of my life… More so than not.

So, if I’m ever asked a question I will try to answer it openly and Honestly. I’m not ashamed to say… “Yes I had depression” Why should I be? So, Having engaged in conversation for at least five-minutes with this lady I suddenly came to realise that there was some type of crossed wires on her part in regards to a depressive episode I experienced around 3 years ago! This started me thinking… Does everybody think the same way?

So I wanted to explain something, and do so very clearly! My son’s diagnosis of Aspergers Syndrome didn’t bring out any…

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Breaking Point. The crisis facing parents of Young Adults with Special Needs in Australia.

Young couple with baby.

 

 

For some parents of special needs children, living the dream of having a happy home and family life, was simply never, ever going to be an option.

Last year SBS aired an ‘Insight’ forum discussion with parents of young adults with special needs  who have relinquished their child’s care over to the State as a consequence of not receiving the support they as individuals, carers, parents and families required to adequately maintain the level of care needed at home.

 

Many of the parents and family members who took part in the discussion stated that they had been calling for ” in home help” and support for years.

 

All to no avail.

 

Even on the rare occasions when  children had qualified for respite care, families were then told that the waiting lists for those respite services were months even years long.

 

One mother described dedicating months of valuable time having her child’s and her families level of need assessed, only to be told at the end of the assessment process, that although her family did indeed qualify for assistance there was no longer any funding available to provide the hours of  care support they had indeed qualified for.

 

Throughout this discussion families reported that their pleas for help and support went routinely unanswered and that the lack of recognition over their genuine need for support led ultimately to a state of crisis.

 

Parents found that it was only once they’d hit that state of absolute crisis and inability to cope with the daily care regimes of their special needs children that any help was offered at all.

 

By then however, the parents and families concerned, had often reached too deep a level of desperation and exhaustion to turn back from the relinquishing process.

 

Many stated that, if  instead of having their pleas ignored or told there was no funding, they’d received the support and respite needs they’d asked for over the course of many years,  then perhaps they may have been able to provide in home care for a longer period of time.

 

Though as one mother pointed out, that as young children with special needs grown into young adults with special needs, there will always be significant issues that parents as full-time carers will have to confront in terms of their child’s on going care needs.

 

Often this means confronting issues of personal safety as aging parents are left to care for adult children whose level of physical strength far out weighs  their own.

 

Parents also state that as full-time carers they literally cannot work outside the home. They therefore usually have no income other than the Carers Pension.

 

This means that they also have no Superannuation.  

 

So as  parental full-time carers of special needs children age, they very  often have little to no additional financial resources to fall back on.

 

This means that they can’t  ‘pay’ for private carers to help them and that unless their children/young adults  qualify for government support via support agencies, the parents are  placed in a position in which they have no option but to relinquish their children/young adults into State care.

 

As one mother says in relation to the charge that as families and parents they are failing in their responsibilities to care for their children…….

 

Our Children are not the burden. It is the broken system that is the burden not our beautiful children. If we could have gotten the help and support we needed to function as full-time carers, we’d still be doing it, but we couldn’t get any help until we’d reached crisis point and by then , for us as a family, it was too late.”

 

Another father wept as he openly admitted that he could never go back to the chaos, stress and daily depression he’d dealt with for years, while trying to get the support his family needed in order to properly care for his son at home.

 

Many parents who had relinquished the daily care of their young adults to the State also expressed that there was a sense in which the alleviation of the stress of having to maintain their young adults daily care routine, once again allowed them to become  parents who were able to fully delight in their child/young adult.

 

For families relinquishing care does not equate to handing a young adult over to the State and never seeing them again, as is the common understanding of relinquishing care. Instead it equates to the certainty of knowing that their young adult is receiving the daily care that they need.  The care is quite simply being provided outside of the home environment by people who are being paid to do so. This way of providing care enables all family members to maintain  full contact.

 

Though the expectation is that parents of children with special needs should automatically take on the role of full-time parental carers as their children grow into young adults with special needs, the experiences of some of the parents within this discussion  indicated that it is time to begin to address and challenge the many issues and inconsistencies involved with such an expectation.

 

The honesty with which these parents gave voice to an issue that is fast becoming a silent epidemic, shrouded in shame and personal blame is simply amazing.

 

I for one hope that discussions such as these continue to be brought out into the public arena so that those outside the experience of caring daily for a young adult with special needs can gain a greater understanding of the complexity of the issues facing not just young adults with special needs but also their parents as carer’s and their  entire family members.

 

Anyone interested in watching  Insight’s Breaking Point click on the link below.

 

http://www.sbs.com.au/ondemand/video/2272818399/Insight-Breaking-Point-Sarah-on-respite

 

 

A mother warrior is…

A Mother who hears there is no hope for her child and,
Instead of retreating and mourning,
Breaks down walls,
Weaves her way through obstacles,
Follows her intuition,
Even when people tell her she is crazy.
She is a mother who believes in hope.
A mother who believes in miracles and,
Is able to carry on with strength and determination,
Even when surrounded by those who doubt her,
And offer her no support.
She is a mother who never gives up,
Even when she keeps hitting dead ends.
These are the women who will continue to open the door,
So future generations of children won’t have to suffer.
These are the mothers with hearts of gold
And shields of nothing more,
Than flesh and bone.
These are the parents who fight,
Giants on daily basis,
And each in their own way,
Win new ground every day.

They are seekers of change.

Seekers of truth.

These are the warrior mothers,

I walk beside proudly,

And whose numbers I hope,
Will one day over flow.

Australian Autism Mother Admits She Thought About Letting Her Son Out To ‘Play In The Traffic’.

An Australian mother of a child with Autism, admitted on National TV tonight that at times she was so stressed with her sons behaviour that she thought about letting him out of the house to ‘play in the traffic’.  Many Australian Autism parent groups are up in arms over the comment given in a 5 minute interview on a current affairs show.

I suspect that the mother concerned will be called on to explain and apologize for her words. However given that she was initially on the show to promote the release of her now book on the experience of parenting her son I have to wonder whether or not she fully realized just what it was she was saying.

Were her words an attempt at sensationalism or the honest though poorly thought out, and equally as unpallettable words, of a mother who had authentically experienced being at the end of her rope?

At the moment it’s hard to tell. What I do know is that this mother is about to be publicly and personally crucified for her comments and I for one hope her son never has to  hear her words. But…..

There is also a part of me that feels desperately sorry for this mother if indeed her words were founded on genuine experience. Many of us know how hard the struggle can be. Many of us are aware that there is an overwhelming lack of support out there for parents of children with significantly violent and challenging behaviours.

Perhaps instead of attacking this mother for speaking, some of us could choose instead to turn a critical gaze onto the circumstances and environment that lead her to make such a disturbing comment in the first place.

What do you think?