Tag Archives: issy stapleton

Perspectives. we are NOT one big “autism family”. Still…

Two days ago, I blogged about Isabelle Stapleton.

Incidentally, there were elections in Australia with the (expected) outcome of a new government that, to be honest, has me worry A LOT about the future where health, education and the general welfare of my family are concerned. While following the events of election day, I also followed the reaction of “the autism community” (parents with autistic children, autistic adults, advocates) to the attempted murder-suicide in the Stapleton family. The ‘community’ is “reeling”. It is also divided.

In brief, some focus on the act committed by the mother (as I did in my post) others have sympathy with her and blame “the system”, ie lack of support. And now the different blocks leash out at each other.

I am writing this as a reminder for myself of what I have already previously observed : we are all different. There is no such thing as ‘the autism community’. Let’s stop pretending there is.

With the stats being what they are (let’s say 1:100 to have an international, not gender specific value), there is no way I have much in common with ALL of the autism parents out there. Other than being a parent to a child with autism, that is.
You don’t know me. We are not “in it together”.

And although I honestly appreciate the insightful blogs of adult autistics, they are not only extremely different than me, but also most probably are very different than my autistic son will ever be when he is their age.

We are all different. We see things different.
We have been through different things in our very different lives. One may feel the pressure of raising a special needs kid getting to them, others might have known the mother from the blog or IRL, so they might think “This could be me one day” (in this case GET HELP). But the other side might feel the grip of fear that eugenics is still a spectre on the horizon and the understanding that parents worldwide kill their own children with special needs is unsupportable for them – because they could be the  victims themselves.

Now as it happened, I too felt some sort of lose connection to it, and the need to comment, to reflect on it, to appeal to parents to stop seek justification for what is an act of crazy non-explainable attempted murder. Psychosis is the only explanation and for anyone who has come close to this, it has nothing to do with the reasons, but all with psyche, trust me.
And I am now over it. I can’t help the Stapleton family. Of course not. I could not then, and I cannot now. Out of respect to Issy, this should not become a political case. Her life has been too public for too long already. Think of her and her family, or pray if you do, her life is still in danger from what i know.

So we are not one big “autism family”. And that’s ok.
Let’s stop judging each other for reactions to what has happened. Look out for those who are close to you, right there and now, and maybe just ask them, are you ok? Be attentive, truly listen, find out how others really feel. Also be honest about it yourself. It is ok to say “I can’t go on no more”. Please keep talking.

ruok-day

That the best we can all do.

Issy Stapleton

I do not know the girl I am thinking of today. Her name is Isabelle Stapleton, known as “Izzy” or “Issy”. You probably know what happened.

When your child is diagnosed with autism, you start scanning the internet for information, for connection, and if it is your medium, blogs of parents in similar situations to relate, to connect, maybe for answers, maybe just for the feeling not to be alone. I have come across very different kinds of blogs and one reason I am still hesitant to fully document my own son’s journey online, is the protection of his privacy and the feeling that while a more popular blog might bring ME the feeling of recognition and community, it might not be, in the end, in his best interest. And my son’s interest always comes first.

Today, I feel sick because a mother whose blog posts I have read, whose blog many of other bloggers have read, has committed what in my eyes is one of the worst acts a person can commit in their lifetime. She attempted to kill her own child.
So I see the first media reports and blog posts talking about “this brave woman who fought tooth and nail” and her “genuine love” for her daughter . I read “even the strongest fall” and “safe haven laws” and respite possibilities are simply not covering the desperation of autism parents in the US. And maybe this is all true.

But, as a parent AND as a person who has been in a situation where I seriously considered suicide as the only way out, then, briefly, murder, yes murder – of my adult abuser – I cannot feel empathy for the woman who is recovering from carbon monoxide poisoning while her daughter is still in a coma with the possibility of permanent brain damage.

There is no excuse. When I first came across blogposts on the strange media attitude that surrounded the horrible deaths of children with disabilities, I felt bewildered and was with those who said “murder is murder”.  Although the struggles of severe autism seem so much harder than my son’s, I felt nothing could ever justify the murder by violence, medication or severe neglect. Nothing.

When I first read one of the long, fierce and somewhat confusing blogposts on “The status woe” , I had felt uncomfortable. What made others join @teamissy, help raise funds for therapy days and celebrate the mother as a warrior, had overwhelmed me as too public, too wordsy, too intense and too much about the mother’s fight. No, I read not much of it. It seemed unstable, scattered. It scared me. For Isabelle. *)

Anyone who has a child with autism and who is not too caught up in the ‘fight’ or more occupied with finding a “cure”, will have found that our own attitude, our own anxiety, stress levels and ability to cope are major factors in the behaviour of our child. No, I am not saying that autism parents are causing their children’s outbursts or aggression but they are contributing to them, when they can’t cope, be it “out of love”, be it by lack of resources, be it their intense personality.
It is very obvious to me that the public fight of Isabelle’s mother was an expression of her panic and inability to cope, and the many people who supported her, and still support her now, in the end, have not been able to protect Issy from her own mother. Her mother who was clearly NOT one of “the strongest”.  She was weak before the fall.
Psychologist will make better sense of it, but for me, those who talk about “co-dependency” and “psychosis” today are closest to the truth.

I am not throwing stones at the whole family, I do not pray, but my thoughts are with them, are with Issy. Issy. I cannot even remotely imagine how the realisation what her mother did, will feel if she fully recovers. I  have no answer to the questions that are raised by these cases. I do not claim to be a better person, or a better parent than the mother who committed the act. Some of us, in life, have come to a point where the idea of death seemed a pretty good prospect to just get away from it all, whatever it is. I do not condemn suicide as cowardly or a sin.
But never ever, in no circumstances, has a parent the right to take this decision for their child, as dire the situation may seem to them.

You have the right to give up, to be weak, to break down. Hell, abandon your child if you cannot cope. You do not have the right to take your child’s life. Never.

*) I found the first post from Feb I read. I commented with links to Anonymous as the mother felt she needed to go MORE public with a video of one of Issy’s outbreaks. I recommended her to opt for a more anonymous presence online.
I now remember being put off by the aggressive attitude of both the mother and many of her supporters immediately after that.