No Longer Invisible Darling Girl

seventhvoice:

No Longer Invisible Darling Girl….. a beautifully written expression of what it’s really like for a mother to walk alongside her daughter on the pathway towards a diagnosis of Asperger’s Syndrome……

Originally posted on A View From My Summerhouse:

It’s been bad. It’s heavy. Bring on whatever it has to be, I can take it, but please don’t let my daughter suffer.  There is nothing worse than watching your children go through the hell of despair.

Today I wanted to write a light-hearted post about the birds visiting my garden, about my cats, about the lovely rain and the sunshine, but I cannot.  The words evade me.  I am lost inside a murky shadowland, staggering about looking for some kind of light, any kind of light.

My daughter suffers, entrapped in a world of isolation, hopelessness and yes, rage, that only someone with Aspergers can understand.  I am her mother and I think I understand, but I don’t, not really, though Lord above, how I try.

I try to explain to people what it really means for her to have Aspergers.  Yes, she went to school, gained a handful…

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Autism and Reverse Discrimination – When Special Needs Equates to A Lack Of Consideration

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I went to collect my almost 17-year-old son from College today, only to find myself being dragged into an impromptu meeting with the head supervisor of his Special Needs Unit and the parent of another 19-year-old student.

So what crime had my son and the other student committed that had the Special Needs Unit in such a tizz?

Well, my son and his friend, had decided that they‘d had enough of being surrounded by people all day, so they’d cut their last class and were found sitting, talking quietly together outside the SNU on a bench.

Oh my god!!!!!!!!!!

What an apparently, absolutely awful and completely inappropriate thing for two young adults with Autism to choose to do!!!!!!!!

How dare they even try and act like “normal” young adults who are capable of making their own decisions regarding their state of mind and choose to take up a small piece of quiet time at the end of the day for themselves, instead of entering once again into a noisy class room.

For making this choice, both my son and his friend were not only hauled over the coals, but both had their parents snapped up in the College car park at pick up time and dragged into an overly serious meeting regarding the “consequences” of said actions”.

I’m sorry but  personally I felt embarrassed to be there, in that meeting, with those people, who were all condemning my son and his friend, for  making the very choices and taking the very actions that they undoubtedly see every other non-autistic student at that College  being able to make for themselves every day, without so much as receiving a second glance by their teachers, let alone suffering the indignity of a reprimand from their head supervisor in front of their parents.

My son chose to go to a main stream College for a reason and that reason did not include him being treated as if he should hold fewer personal rights than any of the other non-autistic students at that campus.

He chose to go to that College because he wanted to continue his education in a ‘normal’ environment and be viewed as a ‘normal’ student.

Yes he has Autism and so does his friend, but that shouldn’t automatically mean that they both forfeit the right to act autonomously occasionally, should it?

Neither left the College Campus.

Neither committed any acts of vandalism nor even tried to do anything particularly wrong.

Neither were being loud or in any way disrupting the learning experiences of  other students.

Neither were being inappropriate with each other in any way.

All they were doing was talking, quietly, on a bench that could be easily seen right outside the window of the SNU.

In comparison to some of the actions of the  ‘normal’  students on that campus  whom I’ve seen walking around swearing loudly, pushing into each other and even in one extreme case punching holes in the wall, my son and his friend were thoroughly tame, well-mannered and despite being without ‘teacher supervision’, were well-behaved.

Yet both my son and his friend found themselves being spoken too as if they were naughty 6 year olds instead of being 17 and 19 years old respectively.

Never once, despite all of the things I’ve seen on that campus, have I ever seen any other students there, being spoken too as if they were an errant child instead of a young adult, by the staff .

So I sat in that meeting, much like my son, cringing from the injustice of it all and realizing silently that speaking up, in this environment,  would simply never be an option at all.

I watched my son grow  paler and paler as the head of the Special Needs Unit grumbled on  and on at him and wondered why it was that this supposedly educated and well seasoned disability support worker could not see the enormous and incredibly negative impact that his words were having on my son.

My own  sense of hopeless sadness growing as the effects of the blows that each negative word, spoken to  my son, had on him.

Taking from him the strength of a head held high and reshaping  his body with deliberately hunched shoulders and a bowed head that averted his gaze from everyone in the room and instead remained stoically focused on burning holes into the floor, with his sad, angry eyes.

When the grumbling had finally come to an end I asked my son if he had anything that he’d like to say but his mouth had formed itself into a thin hard-line.

His words were once again locked inside of him.

He was going into shut down mode and all he could do was glare at the floor and shake his head.

Now, instead of looking forward to going to College tomorrow, as he normally would,  my son is terrified that he might once again make the mistake of thinking and acting for himself and perhaps risk being expelled because of it.

He is equally as terrified that when he goes to College tomorrow that his friend may no longer want to remain friends with him.

It seems the tirade of today has done nothing but reinforce the sense that there is some kind of invisible separation between the rights of my son and the rights of other students at the College.

The reactions of the staff  have done nothing but induce fear within my son.

So accordingly, I can’t help but wonder just where the equality is to be found in any of their dramatic over reactions?

I agree that ideally, my son and his friend should not have ditched their last class, but, what College student isn’t equally as guilty of occasionally doing the same thing, only without all the encumbrances of the embarrassment and fear, that my son has now experienced?

Doesn’t anyone there understand how amazing it is for my son to have a friend that he feels he can genuinely share his time with?

Why does it always seem, that the very measures that are put in place to help my son, too often end up hindering him?

That instead of giving  him a sense of empowerment, these measures end up robbing him of the right to direct his own personhood?

High Functioning Autism in Females – Addressing the level of misdiagnosis reported by parents of daughters with Asperger’s Syndrome – High Functioning Autism

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Figures derived from a national survey on the experiences of parents with young adults on the Autism Spectrum conducted in Australia last year indicate that out of the 203 parents who responded to the survey only 44 reported having daughters diagnosed as being on the Autism Spectrum.

30 of who were diagnosed specifically with having Asperger’s Disorder / Asperger’s Syndrome.

This stands in stark contrast to the 152 parents who reported having sons diagnosed on the Spectrum.

For this reason the information provided by parents with daughters on the Autism Spectrum is considered to offer a previously unexamined snap shot of the previously unrecognized  parental experiences that are  unique to parents of daughters on the Autism Spectrum.

Mothers of daughters within this survey reported that they had to struggle with professionals who were either unaware, ill-equipped or in some instances entirely unprepared to diagnose girls with High Functioning Autism/ Asperger’s Syndrome, Asperger’s Disorder.

As a result many mothers, such as a mother whose daughter wasn’t diagnosed with Asperger’s Disorder until the age of 44, reported having their children regularly misdiagnosed over the course of several years due to inappropriate professional biases towards them as mother’s and a clear lack of understanding as how Autism presents within girls.

The rates of diagnosis and age at diagnosis for girls with Asperger’s Disorder/ Asperger’s Syndrome or High Functioning Autism are further reflected in the statistical data.

Parent Gender

Year of Birth Diagnosis Age at Diagnosis
Mother 1989 Asperger’s Disorder 12
Father 1981 Asperger’s Disorder 26
Father 1986 Asperger’s Disorder 12
Mother 1991 Asperger’s Disorder 19
Mother 1986 Asperger’s Disorder 14
Mother 1988 Asperger’s Disorder 12
Mother 1984 Asperger’s Disorder 13
Mother 1975 Asperger’s Disorder 20
Mother 1995 Asperger’s Disorder 7
Mother 1991 Asperger’s Disorder 13
Mother 1992 Asperger’s Disorder 15
Mother 1988 Asperger’s Disorder 20
Mother 1964 Asperger’s Disorder 44
Mother 1992 Asperger’s Disorder 16
Mother No Record Asperger’s Disorder 26
Mother 1978 Asperger’s Disorder 20

Mother

No Record Asperger’s Disorder 7
Mother 1985 Asperger’s Disorder 10
Mother 1975 Asperger’s Disorder 26
Mother 1998 Asperger’s Disorder 12
Mother 1983 Asperger’s Disorder 18
Mother 1972 Asperger’s Disorder 26
Mother 1989 Asperger’s Disorder 12
Mother 1992 Asperger’s Disorder 18
Mother 1989 Asperger’s Disorder 13
Mother 1986 Asperger’s Disorder 9
Mother 1992 Asperger’s Disorder 14
Mother 1984 Asperger’s Disorder 9
Mother No Record Asperger’s Disorder 7
Mother 1987 Asperger’s Disorder 15

The youngest age at which girls identified as having an Asperger’s Disorder were reported being diagnosed within this survey was that of 7 years, at which only 3 girls, were identified.

2 girls were reported as receiving their diagnosis between the age of 9 and 10 years.

8 girls with Asperger’s Disorder were reported as receiving their diagnosis between the ages of 12 and 13 years.

11 girls were reported as receiving their diagnosis between the ages of 14 and 20 years.

7 females were recorded as receiving their diagnosis after the age of 21.

This indicates that the most likely age range for girls with an Asperger’s Disorder or Asperger’s Syndrome to be diagnosed is between that of 14 and 20 years.

The oldest reported age of diagnosis for a female with Asperger’s Disorder by a mother within this survey is recorded as being at 44 years.

Her mother reports that her daughter’s diagnosis process was “slow” and “frustrating” and states that:

“We eventually found a practitioner who knew about autism but it took decades to find someone.”  In the meantime this mother reports being filled with:  “FRUSTRATION and crying out for real help.”

This expressed sense of frustration is echoed time and time again by mothers with daughters on the spectrum and further indicates that there may well be several issues of gender at play within the realms of diagnosis.

Comments from mother’s within this survey indicate that not only does the gender of the child/young adult being assessed for  an Autism Spectrum Disorder play a major role in the levels of diagnosis occurring but also the gender of the parent engaging within that diagnostic process.

This is further highlighted by the fact that although mothers of children within this study reported having an initial understanding that their children (both male and female) had different ways of responding to the world, often their attempts to understand those differences resulted in negative and personally harmful parental experiences with doctors.

Several mothers described having their concerns “invalidated” through having their parenting and psychological capacities questioned.

These are the words used by mother’s themselves to describe their experiences with the diagnostic process;

“I was actively invalidated in my concerns”.

No one would listen and called me neurotic”.

“No help at any stage – considerable negativity + Put downs (of me)”.

Mother of daughter with Asperger’s not diagnosed until late teens.

“As a mother, I still carry all the emotional scars of the assault on my parenting.”

“Pediatrician refused to diagnose her as he felt she was not on the spectrum.”  

“I knew she had something all along but I couldn’t get a doctor to help.”

Mother of a daughter with Asperger’s not diagnosed until 12.

“Professionals did not have training to recognise ASD in intelligent person”.

Mother of daughter with Asperger’s Disorder.

 “Diagnosis from 7 years old was ADD inattentive, anxiety, transient tic, depression.”

Mother of daughter with Asperger’s not diagnosed until the age of 18.

“Took from age 2 to 11 years to receive diagnosis.”  

“No one was prepared to help from when K was young (neurotic mother) “.

“5 years of medical mis-advise misdiagnosis, misunderstanding, full of angst.”

“Many incorrect diagnosis/parental blame/lack of support”.

“We had idea about ASD, diagnosed with ADD at 4 years.”

Mother of young adult not diagnosed until 22 yrs.

“Long process, complicated (by system/practitioners)”.

However, only one father within this study reported having any such experiences.

Mothers therefore describe having to engage with a lack of understanding and support that often began with their initial attempts to have their child’s needs recognised through a medical diagnosis.

Such parental experiences indicate that the tendency of medical professionals to ignore or misplace parental concerns, particularly the concerns of mothers, as reported by Phillip and Duckworth (1980) and explored in the works of Green (2005) and Ryan and Runswick-Cole (2007) are still occurring.

As Green (2005) and Ryan and Runswick-Cole (2007) argue, the medical mis-recognition of maternal concerns emphasises their precarious and powerless position which arises as a consequence of the unequal balance of power that is created through the elevation of medical opinion above the legitimate recognition of parental expertise.

Parents indicate that as a consequence of not having their concerns legitimately recognized or understood, their children’s needs were also negated. This is further reflected within the trends found within data derived from females on the autism spectrum.

Significance of female data

The significance of a lack of diagnosis occurring for girls with Asperger’s Disorder before the age of 7  and with the majority of diagnosis taking place between the ages of 14 -20 years for females, signals the possibility that medical professional may still yet remain either unwilling or unable to sufficiently detect the signs of Asperger’s Disorders / Asperger’s Syndrome in girls.

Maternal experiences of misdiagnosis, invalidation and their overall lack of recognition within the diagnostic process within this study suggests the need for medical practitioners to incorporate greater acceptance of parental insights. Regardless of gender.

As such the statistical findings relating to the lack of diagnosis for girls with Asperger’s Disorder prior to the age of 7 and the predominance of diagnosis between the ages of 14 – 20 years, supports the assertions voiced  by both many adult women with AS (Simone, Lawson,) and parents within this survey, that there is a strong need for those within the medical profession to redress their gender bias  within all areas of diagnosis in order to increase their diagnostic capabilities so that they can more accurately diagnose and assess the needs of females on the Autism Spectrum as a matter of urgency.

 

Autism Does Not Equal Sterility. Combating the cruelty and ignorance of the words of others.

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My son was returned home to me, pale and extremely subdued, after his weekend visit at his dads on Sunday afternoon.

 

I could tell instantly that something was very wrong, but when I asked him about it he just said that he wanted to go to his room.

 

So he after he’d been in his room for a while I went in to check on him.

 

iamsam3He was crying and watching the movieI Am Sam” on his computer.

 

The movie “I Am Sam” has always made my son cry.

 

Yet he continuously watches it because just like Sam, he too dreams of becoming a father one day.

 

His desire to become a father and experience the joys of raising a child has always been on the top of my son’s wish list for as long as any of us can remember.

 

Even as a child, he’d continuously express his desire to hold and care for babies.

 

His little hands would always be awkwardly reaching out toward the nearest person smaller than himself.

 

Anyone who truly knows my son also can’t help but know this one very important fact about him.

 

Because of this, I am the first to admit that my son’s relationship to the movie “I Am Sam” is a complicated one.

 

He loves to watch it because although it upsets him, it also fills him with the hope that fatherhood for him need not be an impossible dream but instead can become a reachable reality.

 

He relates to this movie on such a deep level because it is the only movie of its kind that portrays an adult, especially a man with an intellectual disability, as being capable of genuinely caring for others, of having a sexual relationship with another special needs adult, and most importantly, of becoming a loving and devoted father despite his own personal circumstances.

 

i am sam1

 

My son is clearly smart enough to know, that the story line contained within the movie, is not beyond the realm of possibility.

 

For this reason, he fears that one day, when he does become a father, there may be someone out there who will try to legally remove his baby from his care, as was done to Sam, by claiming that his status as an adult with special needs makes him an unfit parent.

 

Usually my son will watch the movie, cry and then come and seek reassurance from me that I will never, ever let anyone take away his baby when he has one.

 

This time however, he wouldn’t come out of his room and talk to me.

 

Despite my best efforts he chose to remain within the solitude of in his room all night.

 

This morning when he woke up, he looked even paler and refused to eat his breakfast.

 

Yet he insisted on going to College, as he’s just met a girl that he really likes and he said that he wanted to be near her.

 

Okay. So we get ready and we’re driving in the car when he suddenly breaks down again.

 

Only this time he’s not just silently crying the way he was in his bedroom the night before.

 

This time he’s physically dissolving into great heaving sobs of sadness as he sits in his seat right beside me.

 

I pull over and take him in my arms and ask him again what’s wrong.

 

It is only then that the awful truth finally comes tumbling, haltingly, out of his mouth and the cruel gravity of what’s been said to him whilst at his father’s house, hits me like a red-hot arrow straight to the heart.

 

408967_10150524201273318_535028317_9097053_1821249456_nOn Sunday, whilst they were alone, his father’s new wife took it upon herself to tell my son that he’d “never ever be able to have children of his own because he has Autism and his genetics are all wrong.”

 

He said she then told him to “stop talking about it because she was tired of hearing it and it’s never going to happen anyway so just get over it.”

 

Her words must have felt like bullets to him.

 

Delivered as they were in such an incredibly cold and cruel (and if I were a lesser person I’d also say a deliberately well calculated) way.

 

The impact they had had on him had quite literally cut into the very core of his being.

 

I kept my own sense of rage in check as I tried to calmly reassure him that ‘her’ words weren’t true.

 

Then I remembered that I had a letter from my son’s geneticist still in my bag from the week before. I grabbed it out and read the last line of it out to him……

 

“As we discussed in our previous visit, I look forward to seeing James again when he decides it’s time  for him to have children as there is no reason why his desire to become a father should not be realized.”

 

Fortunately for us, we had seen the Geneticist in November of last year and James had asked him whether or not he would be able to have children.

 

Though initially taken aback by the question, coming as it was from a 16-year-old with Autism and a chromosome deletion to boot, the geneticist answered my son by telling him that there was no reason why, with due care, he could not have children.

 

He also told him that the best way forward with having children would probably be to look at some form of IVF so that they can check any future embryo’s to see if they are carrying any chromosome deletions before implanting them.

 

The whole issue of IVF took quite a bit of explaining later at home, but I still remember the smile that almost split my son’s face  in two once the penny had dropped and the realization that he could truly become a father without causing any genetic harm to his baby finally hit home to him.

 

I tell you, never have I felt so pleased to have doggedly persisted in chasing down the necessary genetic screening tests for my son and never have I felt so relieved to have fallen down on my self-appointed task of judiciously filing away all of James important documents, as I did today.

 

My son sobbed some more as we sat there in our rain splattered car, then slowly, he lifted his head and warily glanced in the general direction of my face.

 

“You promise me I can have children?” he asked me.

 

‘Yes I promise’ I told him. ‘Look here it is in writing. In good old black and white. And you remember don’t you how happy you were when the geneticist said that you could have children?’

 

He nods and blows his nose. His tears slowly stop falling.

 

“So what she said isn’t true?” He asks one more time.

 

“No it’s not true. This,” I say waving the letter in my hand toward him, “this is true.”

 

“But she’s a nurse. She said she knows about this kind of thing”.

 

‘I don’t care what she is. She’s is wrong.”

 

Finally, as a parent, I had the ability to not only answer my son’s questions but to also defend his truths and validate the personal worth and integrity of his dreams against the erosion of harm and doubt that other people’s words of ignorance had caused him.

 

To prove it I hand him the letter.

 

He looks at it as if he’s reading it but I know there’s no way his vision is clear enough to read such small writing.

 

Never the less, he smiles.

 

Folds it up and asks if he can take it to College with him.

 

Normally I’d say no. Not till I’ve made a copy of it.

 

But today……?

 

Today I say….. Yes.

 

YES!

 

Because if nothing else, he needs a yes after enduring God knows how ever many hours of the cruelty of ignorance he’s forced to endure at his father’s house.

 

And as we all know, ignorance is the curse that those with Autism are far too often forced to deal with every day in our society.

 

The curse that follows you home and invades not just your outer space but your inner space as well. Silently shedding its doubts on all of your personal thoughts, your hopes and your dreams, long after the echoes of the words once spoken have disappeared.

 

Parents of children with Autism beware of Facebook Forums…… They are fast becoming the places of choice for ‘professionals’ trolling for business.

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Recently, whilst participating in a Facebook forum meant to have been created for parents, by parents, I had the unfortunate experience of engaging with someone whose method of response I found to be nothing short of well-articulated academic bullying.

So what’s so unusual about that you might ask?

Well I guess, in and of itself this person’s style of academic bullying may not be that unusual.

Nor if it were occurring in any other forum, necessarily a big deal.

But in a forum that’s meant to provide a safe place for parents of children with Autism to openly exchange information,  discuss issues  and share opinions, I found  this persons method of response both confronting and out-of-place.

One of the aspects of this person’s response method, which I found  particularly disturbing, was that although I am reasonably intelligent,  this person continually addressed me as if I, as both a parent and a mother, held no intellectual capacity what so ever.

I found this to be a highly unusual response approach. Especially considering that these responses were meant to have been coming from another parent.

I know that I, and many others, regardless of our academic or professional status’, engage in parent forums first and for most as parents.

As such, we speak from our hearts and not as untouchable academics with text-book answers for everything (no matter how out of date those text-books may be).

Which is why I find that on the whole, most parents in these forums  do as I do whenever they are confronted by an issue that they either do not agree with or do not understand.

They withhold criticism and accept that whatever the topic or the opinions expressed, (no matter how much you might disagree with them),  they are still the valid views and experiences of another parent struggling to find peace within whatever given situation they are in.

As such they are treated with respect and dignity.

The responses therefore are usually ones of compassion; sprinkled with suggestions that other parents think might help.

So to come up against a person whose chosen response method was adversarial, showing little to no genuine degree of personal understanding, was somewhat unusual.

Feeling that something wasn’t quite right, I decided to scroll through the forum and read this person’s responses to other posts.

What I found was  that not only did this  person regularly offer the same form of detached academic response over and over again, but that some of the parents within the forum seemed to be looking up to this person and taking their words and opinions, almost  as gospel.

Another thing that struck me as being particularly odd was the fact, that in all of said person’s responses I’d read, they at no time made mention of, or even alluded too,  actually having a child on the autism spectrum.

The most common phrases they used were “parents need to understand that autism isn’t about them” and “parents should put their child first”, “parents need to listen to fact”.

There were no, ‘as parents we need too,’ statements to be found only  the detached and somewhat authoritative ‘parents should’ variety of commandments being issued forth.

This all seemed to sound just a little too strikingly familiar to me, as it smacked of the Doctor/ God complex that I’d  encountered far too many times  over the years.

This piqued my interest  so I decided to check this person’s Facebook profile and guess what I found?

The person concerned is indeed a practicing psychologist and their Facebook page both promotes their clinic services and provides full contact details on how to make appointments with them.

And guess what area of practice they claim to specialize in?

Autism.

Now call me naive, but just when exactly did parent forums become the feeding grounds for professionals trolling for new clients?

No wonder I found this persons remarks and cold academic way of dealing with the legitimate concerns and situations of real parents to be so disturbingly detached.

It’s because they were never responding as a parent, only ever as a professional.

So the next time you find yourself in a forum where something or someone just doesn’t feel right, listen to your gut instincts and check it out.

You may just be as surprised as I was by what you find.

 

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

 

 

External Hearts

As parents of special needs children,

We  have to learn to stand back,

To let our lovely ones,

Learn to begin to climb their own walls.

Yet this is so much easier said,

Than it ever will be done.

For having a child with Autism,

Is like living a life,

With your heart,

Constantly beating,

Outside of the safety,

Of your chest.

We are always so emotionally exposed.

No matter how strong we think we are,

Just a few unkind words,

Uttered toward or about our child,

Can pierce us in all of our softest places,

In ways,

That others may never,

Understand.

Perhaps this is why every barb,

Whether intentional or otherwise,

Leaves it’s mark.

So please understand that it’s hard for us,

All of this stepping back,

And letting go,

For our children are not just,

 A part of us,

They are,

Our very,

Hearts.