Category Archives: Parenting and disability

Crappy Parenting is a Spectrum Disorder

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Reblogged from Laughing Through Tears:

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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.

Read more… 719 more words

This post is similar to the post I wrote a few weeks back......http://seventhvoice.wordpress.com/2013/05/01/love-me-or-hate-me-this-is-my-response-to-a-comment-that-to-me-tipifys-the-worst-aspects-of-the-autism-community/
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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’.

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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?

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Special Needs Moms – A Look Inside – by April Vernon

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

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Bigotry 101

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Reblogged from Living on the Spectrum: The Connor Chronicles:

In the autism world, there's a word that is brandished about quite regularly, as a means of shutting down conversation.  You've probably seen it.

Bigot

Before I go any further, let's be clear about the definition of that word (you know I love my definitions).

Definition of BIGOT

: a person who is obstinately or intolerantly devoted to his or her own opinions and prejudices; 

Read more… 991 more words

Bigotry 101...... Anyone involved within the Autism community needs to read this post and understand that disagreeing with another's point of view is not bigotry, it' not even close to being bigotry, it's simply a difference of opinion. Nothing more and nothing less. Honestly it makes me cringe sometimes to see those within the community attacking each other over such differences in perspectives. Especially when we are all trying to achieve the same things; equality, acceptance and understanding. So why is it that some within the Autism community seem so utterly unable to offer to others the very qualities they are demanding for themselves?
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Warning of Tragic Funding Consequences For Those With Autism/Asperger’s Syndrome Under the DSM-V

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Illustration: Matt Golding.

Illustration: Matt Golding.

“Australia‘s foremost authority on Asperger’s Syndrome has warned of ”tragic consequences” if governments use the new narrower diagnostic criteria for autism to cut funding for children at the mild end of the spectrum.

”A child diagnosed with apparently mild autism may have challenges that are profound to them. If they are offered little or no support, there potentially could be tragic consequences,” Professor Tony Attwood told the new edition of the Australian Autism Handbook, which will be published on Monday.

Changes to the criteria for the diagnosis of autism – which unlocks $12,000 in funding – are due to come into effect in May.

According to Australian and American studies, the changes are likely to exclude the highest-functioning 9 per cent to 23 per cent of autistic children, many of whom would have received a diagnosis of Asperger’s Syndrome or high-functioning autism under the old criteria.

Those higher-functioning autistics are likely to receive a diagnosis of social communication disorder, as distinct from autism spectrum disorder.

The federal government has yet to decide whether children who have received the lesser diagnosis of social communication disorder will qualify for Helping Children with Autism funding.

”At worst, 75 per cent of those with a current diagnosis of Asperger’s will no longer meet the criteria for an autism spectrum disorder diagnosis under the new criteria,” Professor Attwood said.

The HCWA program has been in place since 2008 and has helped 19,000 children gain access to early intervention services that vastly improve their chances of fitting into mainstream schooling. It is estimated one in 100 children in Australia has autism, though the most recent survey in the US put the rate there at one in 50. Boys are afflicted more often than girls.

Professor Attwood’s caution is supported by the Royal Australian and New Zealand College of Psychiatrists president Maria Tomasic, who said: ”The diagnostic criteria suggests disability may be similar to that of Asperger disorder and will require comparable support. As social communication disorder is a new diagnosis, we do not yet know its validity or associated disability.”

Minister for Disability Reform Jenny Macklin said through a spokesman that her department would ”continue to monitor international best practice and liaise with the Department of Health and professional health bodies about the appropriateness of the tool for diagnosing autism in Australia”.

Sydney mother Kristen Callow knows the trouble parents of newly diagnosed children might find themselves in if funding is cut. Her daughter Juliet, 7, could read at age two but, despite having 500 words in her vocabulary, could not communicate ”I want juice”. She was diagnosed with Asperger’s Syndrome at age 3.

”It could very well be that we would have missed the boat,” Mrs Callow says. ”It’s hard to argue that a profile like that does not need help.

”We got a lot of ‘she is fine’, a lot of dismissal of our concerns. Because she had 500 words, our paediatrician at the time was totally unconcerned.”

After Juliet accessed the early intervention program she has been able to attend mainstream school.

Despite initial difficulties with anxiety and adapting to the social environment, Mrs Callow says Juliet is doing very well.”

This article has been written by Kathryn Wicks, co-author of Australia’s Autism Handbook

Read more: http://www.theage.com.au/national/warning-of-tragic-outcomes-in-narrower-criteria-for-autism-20130330-2h0ab.html#ixzz2RZ8btaHl

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

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Reblogged from 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.

Read more… 573 more words

"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."
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Remember when the NDIS was the NDIS? A Carer’s Lament.

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As the parent of a child with autism I don’t need a pat on the back for all that I do.

Nor do I need to be placated with the odd carers lunch.

I don’t need to go to workshops every week,

Or wear a gold name badge to tell me I’m important.

 I don’t need to be invited to meetings

To serve as the token parent of a child with a diffability

Just  to make you look good.

Chances are I’ll be far too busy looking after my own son ,

To attend your pretense of a meeting.

But then again,

If you really had any understanding of the true issues,

That carer’s face

Then you’d already know that

Wouldn’t you?

Or perhaps the fact that we are all to busy,

Filling our days with the things,

That need to be done,

Instead of discussing the ways,

In which you think they should be done,

Is exactly what you are counting on?

So you can continue to conjure up,

Your stealth legislation.

Either way I don’t need to be the only person in the room not being paid,

To sit through yet another round of your dead-end discussions,

That so skillfully fail to address every real issue,

When it comes to the idea of disability reform.

 So let me make this clearer for you,

 I don’t need to attend carer’s workshops,

I don’t need someone condescendingly telling me that I need to take care of myself,

Whilst  simultaneously denying me the right to have my ‘care’ valued at a rate,

That would be equivalent to a living wage,

 I don’t need any more bureaucratic solutions,

To what is in essence, a very human condition,

So please stop waving your over-designed justifications,

And compulsive needs,

For economic rationalisation at me.

Let me give you some economic rationalisation of my own,

Carer‘s save tax payers billions of dollars every year,

Given that cost benefit analysis,

Are you seriously going to try to tell me,

That this country can’t afford to pay carer’s,

Even so much as a sub-standard wage,

For all of the work that they do?

And while you’re mulling that one over ,

I have another list for you,

It’s called ‘The things that I need’.

I need you to pull your head out the sand,

To stand beside me,

Not above,

I need you to make a sincere commitment,

Toward fulfilling your obligations,

In securing the unfailing provisions,

Including all of the forms of assistance,

That my son may need,

To respectfully be,

Who is,

In the best,

Most humanly honorable way possible.

This means doing more than just standing by,

As policy makers turn what once was a hard-fought campaign for equality,

Into a maybe we should change the name of this pony,

And then lets pop in a few more vote winning extras,

Into the mix,

Like Work Cover Assistance,

This is meant to be the NDIS,

Not a free for all for anyone who might get injured at work.

So please,

Can you just try to remember how this reform all started out?

And the people whom it’s meant to represent.

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Lyrics and Poetry to Live By

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On a Clear Night

Have you ever found a song that just  somehow sums up your journey through life beautifully?

For me, being the mother of a son with Autism, life for us has definitely had its moments.

Yet one of my core beliefs has always been that,  no matter what,  I will be there for him.

For me that means always trying my absolute best to understand him,

To put myself as best I can in his shoes,

And to see the world through his eyes.

To hold him when it all gets too much for him,

And to encourage him soar like an eagle,

When ever he can and in what ever way chooses.

So this song for me called “Night Minds”  by the wonderful Missy Higgins,

Pretty much sums up how I feel about my son,

Our life’s together,

And the promise that I’ve always made to myself to be there,

Not just for him,

But with him.

Night Minds

Just lay it all down.

Put your face into my neck and let it fall out.

I know ,I know ,I know.

I knew before you got home.

This world you’re in now,

It doesn’t have to be alone,

I’ll get there somehow, ‘cos,

I know, I know, I know,

When, even springtime feels cold.

But I will learn to breathe this ugliness you see,

So we can both be there,

And we can both share the dark.

And in our honesty, together we will rise,

Out of our night minds, and into the light,

At the end of the fight…

You were blessed by,

A different kind of inner view:

It’s all magnified.

The highs will make you fly,

But the lows make you want to die.

And I was once there,

Hanging from that very ledge,

Where you are standing.

So I know,

I know,

I know,

It’s easier to let go.

But I will learn to breathe,

This ugliness you see,

So we can both be there and we can both share the dark.

And in our honesty,

Together we will rise,

Out of our night minds,

And into the light,

At the end of the fight.


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So whats in a name you may well ask? Well everything if it denotes dependence instead of independence.

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2012 Global Atheist Convention

 The National Disability Insurance Scheme (or the NDIS as it was formerly known) in Australia has quietly undergone a name change. It’s now to be referred to as Disability Care Australia. So what’s in a name, you may well ask? Well for one thing the use of the term ‘Disability Care’ goes against everything that proponents of NDIS once claimed they stood for.

Namely achieving greater levels of independence for those with disabilities in order to better enable them to choose their own service providers and decide for themselves which types of services were most appropriate for their needs.

The objective was to provide those with disabilities with greater independence so I’m not sure how the use of the term “care’  in this instance is being justified, as it implies the exact opposite of independence for many.

The term “care” is an extremely  loaded term within disability circles as the ABC’s  Stella Young   reports.

Disability Care: a bad name but a good direction?

“The NDIS will now be known as  Disability Care. It’s a terrible name, but at least we are now on the path to providing better services for Australians with disabilities, writes Stella Young.

In a week where legislation for the biggest social reform in generations passed through Parliament, there should have been great applause.

People with disabilities, along with many allies, have been fighting for the National Disability Insurance Scheme (NDIS) for a long time. Indeed, there is much cause for celebration.

So why does it seem there’s more face-palm than applause?

I’d hazard a guess it’s because of the dreadful name. I’ll forgive you if you haven’t heard it. After all, the announcement that the NDIS would now be known as Disability Care Australia was made very quietly by Minister for Disability Reform Jenny Macklin at an event celebrating National Playgroups Week.

Minister Macklin said “The name has been chosen based on consultations with people with disability, their families and carers, peak organisations and the general public.

“Disability Care Australia reflects the principles of the NDIS – that all Australians with significant or profound disability receive the care and support they need regardless of how they acquired that disability.”

Presumably, the re-branding of the NDIS as Disability Care is also an attempt to link the reform to Medicare; to cement the scheme in the minds of the public as existing, like other social services, for all Australians. Unfortunately, the term ‘care’ has a much more loaded history when it comes to disability.

Lesley Hall, head of the Australian Federation of Disability Organisations (AFDO) says that her organisation was one of those consulted and that AFDO strongly advised the Government against using the word ‘care’ in the name.

“The name of the NDIS should reflect what the scheme is trying to achieve – empowering people with disability to be equal with
all other Australians,” Ms Hall said.

“Using the word ‘care’ perpetuates the myth that people with disability are passive and in need of help. It is support people want – not charity, not welfare.”

Despite several attempts, I’ve been unable to find an individual or organisation who was a part of seemingly low-key government
consultation, and who likes the name. Indeed, the name was heavily criticised on a forum discussing the NDIS. This forum was later removed, but the comments still exist in Google’s cache.

We are no strangers to terrible names for things in the disability sector. Two years in a row the campaign for the NDIS, Every Australian Counts, has run so-called awareness-raising DisabiliTEA events. Yes, you read that correctly. Disability, but with cups of TEA. Get it? It’s all terribly cute while doing approximately nothing to address the paternalistic attitudes we fight so hard against.

We’ve tolerated this condescending language in the disability sector for a long time now, so perhaps we’re all partly to blame for Disability Care. We haven’t been talking about rights enough.

While in the UK last year, I noticed how differently disability is spoken about. Folks over there tend not to talk about ‘care’, ‘tolerance’ and ‘support’. They speak of ‘independent living’, ‘equality’ and ‘access’. And the strength of their movement makes it clear that they mean business. By contrast, we’re
decades behind.

It’s hardly surprising that Disability Care was the best the Government could come up with. We’re so used to framing people
with disabilities in terms of how we impact on non-disabled people (you know, the carers), that it would have simply been a bridge too far to hope for anything else.

Personally, I hate the name. I think it’s paternalistic, charity-model, carer-centric rubbish that does very little to empower people with disabilities to exercise the choice and control over our lives that the NDIS is intended to give us.

But, you know what I hate more than crappy names for things? Crappy services. People living with crappy mobility aids that keep them house-bound. People not having access to education, to employment, to their communities. I hate that there have been people living for decades without the support they need to live rich, full lives and participate in the cultural and economic life of Australia.

I hate the fact that Australia ranks last among the OECD nations for quality of life of people with disabilities; that we’re more than
twice as likely as those without disabilities to live near or below the poverty line; that our workforce participation rates are half that of
people without disabilities.

So, yes, I hate the name.

But I hate inequality more.

In all this commotion about a bad name, we’ve lost sight of what really happened this week. And that was something good.

This week, the National Disability Insurance Scheme became law.

It’s here.

We still have much to work on, and many people still have concerns about how the NDIS (oh sorry, I mean Disability Care) will take shape.

What took place in Parliament this week is historic. It will dramatically change the game for future generations of Australians with disabilities. We can now look to a future where Australians with disabilities can aspire to live rich, full lives.

We can start proving that we are not passive objects of pity and recipients of care, but equal members of society deserving of rights and respect.

Once we’ve changed the game, then we can change the name.”

Stella Young is the editor of ABC’s Ramp Up website

Parental rights and Autism… A much needed reality check.

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Recently there has been a rise in the number of sites posting anti-parenting slogans against those of us who are parents of children with Autism. I’m guessing this is due to the fact that April is Autism Awareness month.

Such slogans all carry the same basic message  that we as parents all need to “shut up’, “pull our heads in” and “stop trying to make our child’s Autism all about us”.

Personally I find these kinds of attacks on parents offensive.

I understand that many of these slogans are being created by adults with high functioning autism and I also understand that in creating these slogans they too are pushing their own agendas.

Namely being, that only those with autism should have the right to discuss, weigh in on, or decide the appropriate rights and treatments for children with autism.

And to a large extent adults with autism have every right to both feel this way and express their own views regarding what many of them have lived through first hand, as appropriate ways of treating children with Autism. After all they were all once children with Autism themselves so they should know what worked for them and what didn’t.

I’m also a strong supporter of Finkelstein’s 1976 statement regarding the redefinition and the rights of those with disabilities which states that there should be “nothing  about us without us”.

However Finkelstein was referring to the rights of adults with disabilities to speak for themselves within both the political and academic arenas.

He was in no way claiming that the needs of  children with disabilities should be decided by people other than their parents.

Finkelstein was also referring primarily to those adults with physical and not cognitive disabilities when he penned those famous words.

As such, at the time, he did not specifically have the needs of those with Autism in mind. Nor could he have, given the then relatively low incidences of Autism being reported way back then.

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.

From fathers such as Bernard Rimland who single-handedly, took on the many prejudiced and erroneous assumptions regarding the causes and therefore the treatments of children with Autism.

And in fact, if it weren’t for the work of Bernard Rimland who was both the parent of a child with Autism and a psychologist who had both the courage and the fortitude to stand against the ravings of men such as Bettelheim who claimed that the causes of  autism were due to either cold or neglectful parenting skills, such as the “refrigerator mother” theory, parents  of today may still be being blamed for their child’s Autism.

In 1964, Bernard Rimland published, Infantile Autism: The Syndrome and It’s Implications for a Neural Theory of Behavior. Rimland stressed the plausibility of a biological basis for autism.

The publication of Rimland’s book marked a turning point in our present understanding that autism is a neurological disorder. He therefore effectively showed that parenting styles have nothing to do with the causes of autism.

Thanks to this forward thinking father, many children with autism, who may very well be part of the wave of modern-day adults with high functioning autism now criticizing parents, have  ironically been saved from undergoing years of pointless and often cruel psychotherapy and psychoanalysis.

All due to the fact that one parent, Bernard Rimland, strongly insisted that  Autism was a biological disorder and not an emotional illness (Health Counselor Magazine, Vol. 3 No. 6; June/July 1994).

So you’ll have to excuse me if I find it incredibly shameful that the same adults who may indeed have benefited from the wisdom, knowledge and the perseverance  of the  parent of a child with Autism who insisted that he knew his child better than anyone else and that all previous understandings of Autism were not only wrong but dangerously and harmfully wrong, are now  the very people insisting that such parents should “shut up”, “pull their heads in” and “stop trying to make autism all about themselves”.

Just think for a minute where we’d all be if weren’t for the work of  a parent like Bernard Rimland who was initially laughed at and mocked by his colleagues  and almost went broke trying to prove that  his parental perceptions of his child’s needs and behaviors were right and that they arose from a neurological basis instead of either a  mental or emotional illness.

And then try telling me again why parents of children with Autism need to “shut up”.

Truth is we don’t. Parents of children with Autism as a collective have done more to create positive outcomes for their children than any other group on this planet.

They have raised levels of awareness regarding both the increase in rates of autism and the urgent need for the understanding and acceptance of people with Autism in our communities exponentially.

As such, parent’s have  well and truly earned the right to speak within the Autism community.

They’ve done far more good in terms of assuring that the human rights of children with Autism  are being upheld everyday at every school gate, college, university and work place, than any other group and all whilst being held up for criticism at every turn.

So please, don’t tell me as a parent to “shut up”.

After 16 years of non stop fighting for the rights of my child, I’ve well and truly paid my dues.

And don’t even think about trying to tell me that when ever I have fought for my sons rights that I’ve simply been trying to make his Autism somehow all about me.

Really, ideas like that are no better than the now defeated refrigerator mother syndrome that Rimland laid to rest.

And worse still, please don’t for one more minute pretend that you will be there should I fall down or be unable to continue to make sure that my sons needs are met in every way on a daily basis, because I know, that you won’t be.

So what gives you the impetus to decide that you have a greater understanding of what my child needs, in every way, than I do?

Yes you may well know better the experience of living with high functioning autism, but guess what? My son may not be as high functioning as you? So what then? Do you have the same patience levels as I do? Are you up for the challenge of trying to communicate with someone who won’t or can’t talk to you?

Could you do any better if you were to walk every day in my shoes?

In short, we parent’s do have our roles to play within the Autism community just as Adults with Autism  do as well .

We all have worth and we have all, one way or another,  well and truly earned the right to speak.

So what gives you the audacity to try to take our parenting rights away from us by telling us constantly that we don’t know what we’re doing?

You’d be the first to scream if we tried to take your parenting rights away by telling you how you should raise your.

So why try and take from us the very things you seek to achieve for yourselves?

It simply makes no sense at all.

Especially when so many of us, as parents, over multiple generations, have been so busy fighting every day to make sure that your rights to be heard continue to be respected?

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