Dear Random Internet Strangers:

Please stop telling me that I don't love my children. It's sort of judgmental, considering how you've never met me. And while you're at it, please stop telling me that I'm a bad parent. That's just a given.

April's been a harsh month. It felt like everybody with an internet connection decided to honor Autism Awareness/Acceptance/Ambivalence Month by gracing us with their opinions about how badly we're ruining our kids.

Sterilization whose decision is it? The fine line that parents of teenagers and young adults with severe cognitive disabilities must walk between honoring their childs human rights or committing ‘acts of violence’.

May 11, 2013 by seventhvoice

A new Senate inquiry into the sterilization of people with disabilities is reigniting a decades old debate within Australia.

One of the key questions this inquiry will be asking is whether or not anybody has the right to choose sterilization as a valid option for another person?

Especially if that other person doesn’t have the capacity to speak for themselves.

In one of my previous posts http://seventhvoice.wordpress.com/2012/05/21/the-techniques-of-bias/ I explored the ways in which the very distinct form of language used to frame and dictate the parameters considered valid within the sterilization debate, act as gate keepers of thought, preventing even the most liberal or fair-minded of us from being able to make any clear distinctions as to just whom these laws should and should not apply too and how.

To which I stated:

“Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory for all human beings.” The Techniques of Bias.

I still stand by this statement however, I would seek to question just when it is that the human rights that we consider to be indelible and at all times in the best interests of those involved, cross the line into becoming inhumane rights?

Parents of teenagers and young adults with severe cognitive disabilities, particularly those with girls/young women are facing what can only be described as a double-edged sword that is continually slicing away at them within this debate.

The example I gave in my previous post in ‘the-’techniques-of-bias, regarding a loving family who had requested sterilization for their severely cognitively disabled daughter, and had been knocked back three times by the Guardianship Board, find themselves once again in the firing line within this debate.

They are being held up and accused once again of trying to steal their daughters human rights away from her by requesting that she be sterilized.

Yet no matter how cold heartedly these parents are being portrayed by those who wish to abolish the ability of parents to request sterilization on behalf of their severely cognitively disabled children , I know that the idea of sterilizing their daughter for sterilization’s sake, is absolutely the last thing that these parents wish to engage in.

They don’t want to have to be a part of this fight.

They just want to do what is right for their daughter.

Far from seeking to remove their daughter’s human rights by applying to have her sterilized, they perceive themselves as trying to add to their daughters human rights by giving her the best opportunity of improving the quality of her every day life.

As parents, they want nothing but the best quality of life for their severely disabled, 6 foot tall and incredibly physically mobile 20-year-old daughter, who has a disintegrative developmental disorder similar to that of severe autism.

Although 20 years of age, her cognitive acuity hovers somewhere around that of a 2-year-old.

She is non-verbal and requires 24 hour constant care.

For this family, achieving the best quality of life for their daughter, means alleviating the stress and the trauma that she experiences every time she menstruates.

Fortunately, most of us are not faced with having to help a 2-year-old in a twenty year old’s body who becomes so highly distressed during her periods that she regularly engages in acts of self harm whenever she menstruates.

For these parents however, such acts include their daughter trying to eat her own sanitary pads, smearing her menstrual blood all over her body, face and home,throwing herself at walls, bashing her head repeatedly against the toilet bowl at the sight of her own menstrual blood, and becoming so highly agitated and hysterical that medication is required to calm her down.

Speaking out publicly about their situation they state that “as parents they have tried several less invasive options to try and prevent their daughter from menstruating including two different forms of contraceptive pills, implants, and a menstrual management program, all with “disastrous results”.

Her mother states that “the moodiness caused by the contraceptive pills we’d tried only further exacerbated our daughters anguish….. we’ve had broken furniture, scars from where she’s scratched and bitten us, and my other daughter had a whole clump of hair pulled out of her head”.

“No one should have to feel as angry as my daughter does and put up with having those side effects from medications. I just can’t imagine putting her through this for another 30 or 40 years.”

“To me, that’s cruel”.

“That’s inhumane”.

“There is just no dignity in any of this for our daughter. She doesn’t understand what’s happening to her and (having her period) is stopping her from being able to enjoy those things in life that she would usually be able to enjoy.”

Both parents therefore viewed sterilization as their last and only hope of enabling their daughter to retain both her dignity and her quality of life and stated that being “knocked back by the Guardianship Board for this procedure has left their entire family traumatized.”

“Unless you have lived in this situation you don’t really understand it”.

“I just think it’s wrong that people can vilify you, criticize you and judge you, when they don’t really know what it’s about unless they have walked in your shoes”.

“Any decisions we make about our daughter are about making her already incredibly difficult life easier for her. It’s not about us. It has never been about us”.

This mother’s bravery in once again speaking up and asking that her own daughters human rights be considered on an individual and a ‘what’s best for the person concerned’ approach, indicates that there must be room made within any legislation regarding this issue, that addresses the very complex and complicated issue of cognitive disabilities.

Especially considering that many within the disability community and activist groups view the sterilization of people with disabilities as “an act of violence amounting to both torture and a form of eugenics designed to do nothing more than improve the human race” (Frohmander 2013).

When spoken about in these terms, sterilization becomes seen as “an abuse of a man or a woman’s fundamental human rights” (Frohmander 2013).

Given the terrifying history of sterilizing all people with any form of disability that has in the past, held sway, I can well understand why many in the disability community are pushing for a ban on the sterilization of any person with a disability within this latest Senate inquiry.

However, I do questions, especially given the situations of the parents I’ve outlined above, whether or not, in all cases, a parent requesting sterilization for the betterment of their child’s life, must always be seen as being equal to either “abuse” or “committing an act of violence” against their child?

As it stands in Australia right now, it is possible for a third-party, either a Guardianship and Administration board, or the Family Law Court, to legally uphold a parents request to have their teenager or young adult sterilized.

Given that there is a mountain of legality involved in making such a request the decision to press forward with any request of this kind is not one that is made lightly by the parents of teenagers or young adults with any form of disability, let alone a severe cognitive disability in which the body, for all intents and purposes is seen to “function normally”.

Yet this is no longer an issue that revolves solely around the rights of those with physical disabilities or mild intellectual disabilities, who can speak for themselves and whom I thoroughly agree must have every right to make their own decisions about each and every aspect of both their bodies and their lives, but it is also an issue that must enable those so endowed with making any final decisions on behalf of those with severe cognitive disabilities, the capacity to treat each request for sterilization, from a person centred, best outcomes approach,that encompasses a greater understanding and awareness of the needs, and therefore a broader understanding of what it is that encompasses the human rights of every individual that comes before them, regardless of the form that individuals disability takes.

I’m yet to be convinced that we should be seeking to treat this very serious issue as if it were a one size fits all dilemma capable of being fixed by a one size fits all piece of blanket legislation?

What do you think?

Disabled poorly treated by the law (smh.com.au)
Why I can’t let it go: #JusticeForEthan (kimchilatkes.com)
‘I make the decisions that she cannot’ (smh.com.au)
Can the physically disabled be protected from sexual abuse? (salon.com)

Hairspray, a lighter and a very troubled teenager.Which ever way you look at it, this was always going to be a lethal mix.

May 5, 2013 by seventhvoice

This is what my daughter did tonight in her room with a can of hairspray and a lighter…..

She could have seriously injured herself of burnt the entire house down.

Worse still, she got her brother to take a photo of her while she was doing it……..

Neither of them seem to have any sense of the danger they were placing themselves and others in……….

Yet my daughters actions tonight are just the latest in a very long list of dangerous behaviors

.

I don’t think she has a fascination for fire per se.

As this is the first time that she’s pulled such a stunt.

Well that I know of anyway.

I think instead, that her actions tonight were simply yet another attempt at trying a new way of behaving destructively, on for size.

I say this because after the whole fiery incident tonight she tried to sneak a whole packet of Panadol out of the kitchen.

When I asked her what she thought she was going to do with them, she told me that she was going to take them all.

I tried to wrestle them out of her hand before she could leave the room with them, but she got away.

So I chased her up the stairs and told her that over dosing on Panadol was one of the worst ways any body could possibly choose to die.

That people linger on for months in agony while their livers slowly break down inside their bodies.

As cruel as it might sound, this form of logic worked on her and she handed the Panadol back to me.

Then locked herself in her bedroom again.

I am extremely worried for my daughter’s safety and have been for many months now.

We’ve been to see professional after professional but none of them have been of any help.

She’s booked in to see her latest psychologist next week.

But bugger that for a joke.

I’m going to be ringing him first thing in the morning to tell him that he needs to take action now.

No child or parent should have to keep living this way simply because they’ve been shoved at the end of yet another waiting list.

So while the politicians wax on about how they’re going to solve the crisis in health care in Australia !!!!!

We’re the ones who have to live with it on a daily basis.

So why all the animals ?????? This post is in honor of my middle son…… I really do see you my lovely young one.

May 4, 2013 by seventhvoice

I rarely write about my middle child.

My youngest son who so willingly engages, Within in his own silent and peaceful universe.

The universe he’s created to escape the lack of attention he receives from me when ever I’m busy dealing with either the needs of my eldest son or the melt downs of my youngest daughter.

I know sometimes he thinks that I forget to see to him.

That I forget to listen to, or hear him.

Or that I forget to think of him and his needs amidst the daily jungle of our lives.

I’d like to say that he’s perspectives are neither accurate nor true,

But,

If I’m honest,

I know that sometimes he’s right.

So in order to show him that I do see him,

That I do listen to him and think about him,

His interests and his needs,

I’ll often search the internet for amazing wildlife photos of the animals I know he loves and adores.

He is a child of nature.

And he loves all creatures big and small.

This is his way of coping.

And I love taking the time to see, appreciate and understand the sense of wonder that still exists within his precious soul.

So this post is for you my lovely young lion.

And this is your mother’s way of saying she’s watching over and loving you just as much too <3

“Love isn’t in your eyes baby girl, it’s in your heart”

May 2, 2013 by seventhvoice

I see your true colors,

Even when others don’t!

Love isn’t in your eyes baby girl,

It’s in your heart.

Tammy Faye.

To the New Mother of a Baby with Down syndrome (not-alone.org)
Beautiful – Infinite (Lyrics by Nam Woohyun) (mandyxxdrgn.wordpress.com)
http://seventhvoice.wordpress.com/2013/04/27/can-you-tell-just-by-looking/

Special Needs Moms – A Look Inside – by April Vernon

May 2, 2013 by seventhvoice

Okay….. So today lets look at the positives of parenting a special needs child…….

Mom organizes prom for kids with disabilities (kvue.com)
http://seventhvoice.wordpress.com/2013/04/27/can-you-tell-just-by-looking/
6 Secrets from a Special Needs Mom (blogher.com)
6 Secrets Special Needs Moms Know But WON”T Tell You (specialneedsmom.typepad.com)

Love me or hate me, this is my response to a comment that to me tipifys the worst aspects of the Autism Community.

May 1, 2013 by seventhvoice

I received a comment to my post /parental-rights-and-autism-a-much-needed-reality-check/ a while back that I’ve left in my pending tray for quite some time.

I left it there mainly because I couldn’t understand the logic involved in the arguments the commenter applied.

Yet I did not want to dismiss it out of hand without first giving it due consideration.

In the post I’d previously written, I’d argued that no one should have the right to tell parents of children with Autism to either “shut up” or to treat them as if they had nothing what so ever of value to offer to the Autism community.

Within my article I openly acknowledged that adults with autism have every right to express their own views regarding the childhoods they had lived through first hand, and that due to this they did indeed have a large degree of expertise to offer as to what should count as appropriate ways of treating children with Autism.

To me, acknowledging the wisdom and advice that adults on the spectrum can provide to parents is an absolute must if we are ever truly to become a cohesive Autism Community.

Yet despite making several valid statements as to both why and how parents of Autistic children and Adults with Autism should work with each other instead of against each other, the comment I received form a person who neither identified themselves as either a parent or an Adult with Autism really bugged me.

So I decided to try and break it down to figure out why it bugged me.

This is how the response started;

“While I acknowledge that many parents have fought the good fight– and continue to do so– on behalf of their autistic children, it is also sadly true that many autistic children suffer a great deal at the hands of their parents. Some of that suffering is due to societal problems, and some of it is due to neurotypical parents misunderstanding or being unaware of their autistic child’s needs.”

Ummmm….. I’m sorry but I simply do not believe that children with Autism are suffering from having “misunderstanding” parents.

If anything parents of children with Autism are often later found to be somewhere on the Autism Spectrum themselves, so I’m not sure where all of these ideas about ‘misunderstanding neurotypical parents’ are actually coming from.

More importantly, neurotypical or not, I do not know one single Autism parent who has not worked their asses off firstly in seeking help for their child, and then secondly reading everything and anything they can get their hands on that might provide them with some kind of insight as to how to better help and understand their child.

So once again, where are all of these ‘misunderstanding neurotypical’ parents coming from and where’s the data to back such claims up?

Then the commenter does a backflip in acknowledging that there are several wonderful Autism parents out there and even takes the time to point out who they are.

But if you look closely at the following paragraph, you will find that those parents who have been singled out as praise worthy are parents that fit a certain kind of criteria.

“There are plenty of wonderful parents out there, like this one: http://emmashopebook.com/2013/04/04/what-i-wish-id-been-made-aware-of-when-my-daughter-was-diagnosed-with-autism/. I am deeply grateful to the parents who are willing to stand up to society for their children’s rights. I applaud parents who refuse to believe the experts who tell them that their child cannot learn, or that those children should be forced to endure things they find traumatic for the sake of looking normal (http://juststimming.wordpress.com/2011/10/05/quiet-hands/), or that the caregiver is always right (http://ballastexistenz.wordpress.com/2012/04/30/badd-caregiver-abuse-takes-many-forms/).”

So under these proviso’s, if you are a parent who listens too, seeks help from or agrees with experts on any level, then you are not doing your jobs right.

Right?

Ah no and here’s why.

There’s a big “but” involved in this line of logic that is far too often overlooked.

Basically if we, as parents, were to all ignore “the experts” then our children would never have been diagnosed in the first place because in theory, we should all have refused to agree with an “experts” diagnosis of our children as having Autism.

Seriously I am so tired of the constant catch 22 that some within the Autism Community continue to use against parents in this way.

This circular form of thinking places parents in a no win situation.

We’re either damned as fools if we do listen to “ experts” or damned as neglectful, harmful or abusive ‘neurotypicals’ who haven’t bothered to take the time to find out the facts, if we don’t.

A part from all of that, hidden within that paragraph is this message “I applaud parents who refuse to believe……. that the caregiver is always right” .

Now this meaning may not have been the commenters initial intent, but what if it was?

Why on earth should parents be told to promote the idea that they, as caregivers are not “always right”.

That they don’t always know what’s best for their children and that they don’t always dedicate themselves, everyday, to understanding and honoring their children’s human rights.

I’m sorry, but to me, this continuous misnomer that for Autism parents honoring their children’s rights comes somewhere way down the list of whatever mysterious parenting agenda, those of us who do not fit the perfect Autism parenting criteria, are supposed to have, simply just is not true.

If it were true there would simply be no Autism Community at all.

Who do you think started it?

Parents did. That’s who.

As I stated in my original post.

“In truth, the biggest contributing factor toward the significant rise in Autism awareness over the last 5 decades has not come from adults with high functioning autism, nor from any magnanimous sharing of Autism facts by professionals, rather it has come from the hard-fought efforts of parents of children with Autism to unite and share information with one another.”

In my article I outlined how one father Bernard Rimland single-handedly, took on the many prejudiced and erroneous assumptions surrounding the causes of Autism back in the 60’s and that in doing so, he advocated for an end to the barbaric treatments that children with Autism were being subjected to.

In fact, if it weren’t for the work of parents like Bernard Rimland , whose book Infantile Autism: The Syndrome and It’s Implications for a Neural Theory of Behavior marked a turning point in our present day understandings of Autism as a neurological disorder/processing difference, then many of the new wave of adults with high functioning autism who are now so clearly and eloquently speaking for themselves, may have instead endured years of pointless and often cruel psychotherapy and psychoanalysis.

So really, there is very little basis for the argument that in order to be a good Autism parent you must first admit that you don’t know everything about your child.

Despite these facts, the commenter then goes on to say.

“Unfortunately, there are a lot of parents out there I wish would shut up. These parents throw pity parties for themselves and tell the world about what a burden their child is (parents who are autism allies, on the other hand, talk about the difficulties they encounter in raising their kid, sure, but in a way that’s respectful, that won’t destroy that child’s self-esteem if/when they read those articles online later in life). Parents who need to shut up are the ones who derail conversations about the abuse and murder of autistic people (kids or adults) with arguments that it’s sometimes justified, or take those discussions invariably as unwarranted personal attacks on all autism parents. Or parents who refuse to believe their child is intelligent just because they don’t speak, even when they show that intelligence in many other ways.”

I’m sorry but I simply do not know any parents who have murdered their Autistic child. Nor do I know of any who would call such a heinous act justified.

Nor do I know of any who speak of their children as “burdens”.

The concept of the “burden of care” was invented by doctors and psychologists in an effort to try and pathologize parents of special needs children as being either emotionally unstable or possessing a depressive personality type.

In reality it was nothing short of being another attempt by the medical establishment of blaming special needs on parents.

It was not a term invented by parents, nor is a term used by parents.

In general I find that if a parent takes offence to a statement regarding the “lack of understanding displayed by parents of children with Autism,” it is usually warranted due to the manner in which some choose to express themselves.

Further to this, no parents that I know of refuses to believe in either the worth of the potential of their child.

I mean really, just think about it.

If it really were the case, that we as parents have given up on children, or are refusing to believe in their intelligence, then we’d all be putting our feet up, instead of madly scurrying to and fro to fit in speech, occupational and physio therapy sessions.

The care industry would fall into complete chaos and therapists everywhere would be out of their jobs. But oddly enough they’re not!!!!

The commenter then goes on to say;

“Yes, I worry about taking parental rights away from autism parents… but mostly because that would mean giving those rights to someone even worse.”

Really, according to you, who could be worse than some of us parents?

This comment is followed by the claim:

“I do wish parents were required to take some classes designed/taught by adults on the spectrum in order to better understand their children’s needs.”

Okay, hands up all of you parents out there who have ever gone to workshops, or attended events with speakers who are Adults with Autism?

Voluntarily. Without being told too.

Well I for one have attended many such workshops and events without being told too and I did so because I wanted to learn more about the experience of Autism in order to best help my child.

I can also tell you that every workshop and event I’ve been to has been filled with other parents who are all there for the very same reason.

They want to better understand their child.

As if that weren’t enough, the commenter then ends their response with the observation:

“I often find that people on the spectrum are treated best by people who have been taught the least about autism– because they don’t approach that individual with a mind full of misinformation, pity, and stigma.”

I’m sorry but hasn’t the commenter just spent their entire post stating that we need to better understand Autism?

How on earth can they then turn around and make the claim that placing anyone with Autism with someone who has an uninformed mind would be better than being surrounded by people who love and care for them and who are trying desperately to understand them?

You’ll have to excuse me but when it comes to this kind of argument, I’m completely lost.

How about you?

Warning of Tragic Funding Consequences For Those With Autism/Asperger’s Syndrome Under the DSM-V (seventhvoice.wordpress.com)
Searching For the Causes of Autism – If it’s not vaccines, what should we focus on? (babble.com)
The Closing of Autism Awareness Month! This Will Capture Your Heart…Mothers Who Love Beyond Autism (everythinggirlslove.com)
Bigotry 101 (seventhvoice.wordpress.com)
Parental rights and Autism… A much needed reality check. (seventhvoice.wordpress.com)
Dear Autism Community (gretchenleary.wordpress.com)
http://seventhvoice.wordpress.com/2013/04/27/can-you-tell-just-by-looking/

The Thing About Autism

April 29, 2013 by seventhvoice

Reblogged from Kyra Anderson 5.0:

You find yourself at the center of a huge debate. You’re the new black, the hot topic, part of a growing epidemic, an oft-cited statistic that grows at alarming rates or not at all, depending on who is doing the reporting. You’re living the thing most families fear. You’re the brave one, the resilient one, the courageous one, the one doing something she or he (but mostly she…

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

April 26, 2013 by seventhvoice

Reblogged from A boy with Asperger's:

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.

Do Step Parents Every Really Love Their Step Children In The Same Way As They Love Their Own

April 18, 2013 by seventhvoice

I know the rhetoric of motherhood would have as all believing that step parents can and do love their step children with the same depth of devotion that they love their own biological children, but for some years now, I’ve been wondering if this rhetoric is really true?

Can a step parent ever truly love a step child in the same way that they love their own biological child?

Now don’t get me wrong here, I’m not trying to automatically cast all step mother’s by default as the villain of the piece.

Nor am I suggesting that each and every blended family holds the same level of dynamics within them, but what I am suggesting is that we stop and really look at the realities of being a step parent.

As a parent you naturally want what is best for your child.

But what happens if what is best for your own child stands in stark contrast with what is best for your step child?

Under these circumstances which child wins out?

Which instinctual part of you, as a both a mother and a step mother, do you give in too?

Do you put your own biological child’s needs first, as instinct dictates, or do you fight this side of yourself and instead place the needs of your step child first?

I think that if women were truly to be honest about this, they’d admit that in most cases their instincts to first seek the comfort of their own biological child wins out over that of primarily seeking to administer that same level of comfort to their non-biological child.

I’ve seen this dynamic play out time and time again both whenever my own children are in the care of their step-mother and within my own childhood growing up as part of a blended family.

I know that from my own perspective, the needs/wants of the biological child always seem to win out over the needs/wants of the non-biological child.

And I strongly suspect that I am far from being the only person who has experienced the results of step parenting in this way.

If you were to throw into the whole step parenting mix a non biological child with a disability, what happens then?

Would a step mother willingly fore go her own child’s hobbies and interests in order to spend hour upon hour at a therapy center with her non biological child if need be?

And if she did, would that not create in her a level of resentment on behalf of her own biological child that would be difficult to suppress no matter how hard she might try?

Would that resentment then present itself in other passive aggressive ways that may seem less obvious yet still be just as detrimental to the self-esteem of her non-biological child?

Things such as never letting the step child have a say in the movies or the tv channels that they watch, the snacks that they eat, or the places that they go for outings?

From my experience, this is exactly how passive aggressive step parenting presents itself.

Which is why it leads me to wonder whether or not as a society, we’ve simply created an idealized version of what a step mother should be capable of doing, for example lavishing equal amounts of unconditional love on both her own child and her step child, instead of acknowledging that in reality, instinctually, if for no other reason, this ideal may never really be the case.

For much of this kind of happy ever after, unrealistic thinking, I blame the Brady Bunch.

What do you think?

Have you grown up in a blended family?

If so were you the step child or the biological child?

And what were you experiences of it?

The Anti-Step Mom (unnecessarywisdom.wordpress.com)
Blended Families, Step Parenting & Co- Parenting (lipssealedsoulspeaks.com)
5 Tips for Blended Families – Parenting (everydayfamily.com)
Steps Toward Building Our Stepfamily (everydayfamily.com)
What Is Your Story? (isthatamom.wordpress.com)
step parent 101 (rose48809.wordpress.com)
Being an effective step parent (2plus1equalscrazymom.wordpress.com)
Tips for Step Parents (isthatamom.wordpress.com)

Related articles

A new Senate inquiry into the sterilization of people with disabilities is reigniting a decades old debate within Australia.

One of the key questions this inquiry will be asking is whether or not anybody has the right to choose sterilization as a valid option for another person?

Especially if that other person doesn’t have the capacity to speak for themselves.

To which I stated:

“Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory for all human beings.” The Techniques of Bias.

I still stand by this statement however, I would seek to question just when it is that the human rights that we consider to be indelible and at all times in the best interests of those involved, cross the line into becoming inhumane rights?

Parents of teenagers and young adults with severe cognitive disabilities, particularly those with girls/young women are facing what can only be described as a double-edged sword that is continually slicing away at them within this debate.

They are being held up and accused once again of trying to steal their daughters human rights away from her by requesting that she be sterilized.

They don’t want to have to be a part of this fight.

They just want to do what is right for their daughter.

Far from seeking to remove their daughter’s human rights by applying to have her sterilized, they perceive themselves as trying to add to their daughters human rights by giving her the best opportunity of improving the quality of her every day life.

As parents, they want nothing but the best quality of life for their severely disabled, 6 foot tall and incredibly physically mobile 20-year-old daughter, who has a disintegrative developmental disorder similar to that of severe autism.

Although 20 years of age, her cognitive acuity hovers somewhere around that of a 2-year-old.

She is non-verbal and requires 24 hour constant care.

For this family, achieving the best quality of life for their daughter, means alleviating the stress and the trauma that she experiences every time she menstruates.

Fortunately, most of us are not faced with having to help a 2-year-old in a twenty year old’s body who becomes so highly distressed during her periods that she regularly engages in acts of self harm whenever she menstruates.

Her mother states that “the moodiness caused by the contraceptive pills we’d tried only further exacerbated our daughters anguish….. we’ve had broken furniture, scars from where she’s scratched and bitten us, and my other daughter had a whole clump of hair pulled out of her head”.

“No one should have to feel as angry as my daughter does and put up with having those side effects from medications. I just can’t imagine putting her through this for another 30 or 40 years.”

“To me, that’s cruel”.

“That’s inhumane”.

“There is just no dignity in any of this for our daughter. She doesn’t understand what’s happening to her and (having her period) is stopping her from being able to enjoy those things in life that she would usually be able to enjoy.”

Both parents therefore viewed sterilization as their last and only hope of enabling their daughter to retain both her dignity and her quality of life and stated that being “knocked back by the Guardianship Board for this procedure has left their entire family traumatized.”

“Unless you have lived in this situation you don’t really understand it”.

“I just think it’s wrong that people can vilify you, criticize you and judge you, when they don’t really know what it’s about unless they have walked in your shoes”.

“Any decisions we make about our daughter are about making her already incredibly difficult life easier for her. It’s not about us. It has never been about us”.

Especially considering that many within the disability community and activist groups view the sterilization of people with disabilities as “an act of violence amounting to both torture and a form of eugenics designed to do nothing more than improve the human race” (Frohmander 2013).

When spoken about in these terms, sterilization becomes seen as “an abuse of a man or a woman’s fundamental human rights” (Frohmander 2013).

Given the terrifying history of sterilizing all people with any form of disability that has in the past, held sway, I can well understand why many in the disability community are pushing for a ban on the sterilization of any person with a disability within this latest Senate inquiry.

As it stands in Australia right now, it is possible for a third-party, either a Guardianship and Administration board, or the Family Law Court, to legally uphold a parents request to have their teenager or young adult sterilized.

I’m yet to be convinced that we should be seeking to treat this very serious issue as if it were a one size fits all dilemma capable of being fixed by a one size fits all piece of blanket legislation?

What do you think?

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‘I make the decisions that she cannot’ (smh.com.au)

Can the physically disabled be protected from sexual abuse? (salon.com)

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This is what my daughter did tonight in her room with a can of hairspray and a lighter…..

She could have seriously injured herself of burnt the entire house down.

Worse still, she got her brother to take a photo of her while she was doing it……..

Neither of them seem to have any sense of the danger they were placing themselves and others in……….

Yet my daughters actions tonight are just the latest in a very long list of dangerous behaviors

.

I don’t think she has a fascination for fire per se.

As this is the first time that she’s pulled such a stunt.

Well that I know of anyway.

I think instead, that her actions tonight were simply yet another attempt at trying a new way of behaving destructively, on for size.

I say this because after the whole fiery incident tonight she tried to sneak a whole packet of Panadol out of the kitchen.

When I asked her what she thought she was going to do with them, she told me that she was going to take them all.

I tried to wrestle them out of her hand before she could leave the room with them, but she got away.

So I chased her up the stairs and told her that over dosing on Panadol was one of the worst ways any body could possibly choose to die.

That people linger on for months in agony while their livers slowly break down inside their bodies.

As cruel as it might sound, this form of logic worked on her and she handed the Panadol back to me.

Then locked herself in her bedroom again.

I am extremely worried for my daughter’s safety and have been for many months now.

We’ve been to see professional after professional but none of them have been of any help.

She’s booked in to see her latest psychologist next week.

But bugger that for a joke.

I’m going to be ringing him first thing in the morning to tell him that he needs to take action now.

No child or parent should have to keep living this way simply because they’ve been shoved at the end of yet another waiting list.

So while the politicians wax on about how they’re going to solve the crisis in health care in Australia !!!!!

We’re the ones who have to live with it on a daily basis.

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I received a comment to my post /parental-rights-and-autism-a-much-needed-reality-check/ a while back that I’ve left in my pending tray for quite some time.

I left it there mainly because I couldn’t understand the logic involved in the arguments the commenter applied.

Yet I did not want to dismiss it out of hand without first giving it due consideration.

In the post I’d previously written, I’d argued that no one should have the right to tell parents of children with Autism to either “shut up” or to treat them as if they had nothing what so ever of value to offer to the Autism community.

To me, acknowledging the wisdom and advice that adults on the spectrum can provide to parents is an absolute must if we are ever truly to become a cohesive Autism Community.

So I decided to try and break it down to figure out why it bugged me.