16 January 2009

Simply Stunning Selfishness

Not to mention ingratitude. Thanks to Peggy at Southern Illinois Catholic who found this anti-gem of an article in the UK Daily Mail. It is no shock why the moral milieu in England stinks even more than ours-- and that's saying something.

Because, you see, according to the article, an autistic child wrecks your life.

Wrecks lives? Certainly a special needs child provides challenges to his family. Unique burdens. But there are unique joys as well, as any parent of a special needs child will tell you. The idea that such a child wrecks one's life is to have a non-Catholic notion of the efficacy and beauty of redemptive suffering, and a non-Christian notion of the gift of procreation. Children are always and everywhere a blessing, and never a curse.

Yet society scorns the child, and the poor parents, too. It pities the parents, but will not praise them. And any parent who expresses joy, gratitude or the desire for another child under these conditions is an outcast. The author's question and answer at the end of the story tells the story of just where we are.

Here is the article, if you care to read it:

Why can't we face the truth? Having an autistic child wrecks your life ...

By Carol Sarler
Last updated at 3:42 PM on 15th January 2009


Thanks to a moment of everyday terror, I think I knew before anyone else. My friend's two-year-old had climbed upon a chair from which, with customary toddler clumsiness, he fell.
Like all children, he managed a second of stunned silence - then howled like a banshee. Like all adults, I rushed to pick him up, to cuddle, to soothe.

What was unexpected was his response: visibly fearful of my touch, he kicked my belly, disengaged himself and ran away.

I added that to the list I was already mentally composing: no eye contact, ever. Not even with his mum. No shred of attachment to toys, pets, people. Obsessive, repetitive behaviour. Crazed by the sight of other children. Hmm.

By his fourth birthday, still with nappies, but without speech, everyone else knew, too.

Tom was - I mean is, and always will be - autistic. I've been thinking a lot about Tom, who's now seven, as the debate rages over the possibility of a prenatal test for autism, with abortion then optional.

And, so far, most of the argument leans towards such a test being undesirable and unethical.

Brave and devoted mothers - notably Charlotte Moore, whose book, George And Sam, about her two autistic sons, is immensely powerful - have clung to the positives brought into their lives by their children.

Backing the emphasis on the positive have been those who point to the frequently high intelligence of the autistic savant, as if we are talking about phalanxes of Mozarts and Einsteins.

How much poorer we would be without, say, the astonishing brain of Dustin Hoffman's Rain Man!

Who would or could babysit this child?

Well, maybe. But not as poor as Tom's family: three generations of lives - I include his own - wrecked, for ever, by his cussed condition.

His parents, let us call them Cath and John, bear the brunt. Immediately after diagnosis, she beat herself senseless with blame; so many theories, each making it her fault.

Should she have allowed her son to have had the MMR jab? Was it, as some said, a behavioural disturbance caused by 'bad' parenting?

Once, she even convinced herself (from something she'd read) that it was mercury poisoning from eating tuna during her pregnancy.

Theories, however, were soon to defer to practicalities. They strove for a normal life: simple things, such as going shopping together.

But with the best will in the world, how many shops - or, indeed, how many customers - are going to tolerate a child who screams, bites, defecates and destroys everything within reach?

Besides, dangers lurk. Last time I bumped into them in a supermarket car park, Tom was bawling hysterically. Why? Because he had seen a bird. So, mostly, Cath and John stay at home.

Both their careers are over - not, as for many with small children, on hold for a few years. Each knows that neither will work full-time again.

There have been attempts with special schools, but none succeeded. Sanity is preserved by each parent having a hobby (fishing and tennis), so one babysits while the other takes a break.

They rarely go out together, for who else - other than one plucky grandmother - would, or even could, babysit this child?

Worst of all, the other babies, of whom Cath and John had dreamed, have been ruled out.

First, because they simply do not have the time to give to another child. And second - I admire them for thinking of this - they do not feel it would be fair to raise a child already programmed to be guilt-tripped, whether by itself or by others, into taking on the role of carer when Cath and John are no longer capable. Or dead.

This, then, is their life sentence: to worry, every hour of every day, what will happen to Tom when they are gone.

Meanwhile, Cath's parents - both exceptionally youthful at 60 - have had their own plans turn to dust.

They had looked forward to more time together in retirement; in fact, they have less.

Granny Helen spends all the time she can, maybe more than is good for her, trying to help out: a little childcare here, a spot of shopping there.

The carefully saved nest egg, intended for the small luxuries that make ageing more enjoyable, is rapidly depleting.

With Cath and John unable to hold down proper employment, it is Helen who chips in for the unexpected bill, the car repair or the TV licence.

Tom had ripped out a handful of her hair

And, please, don't ask about state benefits for carers: these are so meagre that if it were not for Helen, Cath could not even afford the mobile phone she must have with her every time she steps outside her front door.

The trouble is that Grandpa Bill is not quite as happy as Granny Helen for their money to be spent this way - so there are new tensions there, at a time in life when they need them least.

Yet of the three generations, it is Tom who suffers most. And he's getting worse. As Helen said, only last week: 'We used to have a little autistic boy who was often happy. Now we have one who never is.'

All three generations set off in a bold attempt at a holiday over Christmas. Not a resort, bustling with strangers; quite impossible. But a rented house, just the five of them, to let Tom feel the warm sun on his face. Well, it was a nice thought.

I phoned with New Year good wishes. Helen answered, in tears. Her head hurt, she said; Tom had ripped out a handful of her hair by the roots. Bit her, too. But I couldn't hear what she was saying for the insistent shrieking in the background.

Waaah! Waaah! Waaah! Goodness, I said. How long has he been doing that? Since they left home, two weeks earlier: through the airport, on the plane and 18 solid hours a day.

They had to have him sedated just to get him home again, which Cath hates doing. So that's it for holidays, breaks, respites or breathers. Again, for ever.

Autistic children are not all the same

And the question they are starting to ask is too terrifying for words. If this amazingly beautiful child (they often are), possessed by misery and rage that no amount of expertise has relieved, is this destructive and violent at seven, then how much worse will he be at 17, when he's that much stronger?

Last year, I gave them Charlotte Moore's book, thinking, foolishly, that it might afford comfort.
It actually meant nothing; they simply could not see Tom in George and Sam. Autistic children, like any other children, presumably reserve the right not all to be the same.

But if there's a chance of a Tom, and a chance of a test to indicate his condition, then - with the obvious proviso that it never be mandatory - I would urge its opponents to think less of Mozart and Einstein and more of otherwise everyday people: Cath, John, Helen, Bill. And Tom.

I would not be impertinent enough to ask Cath if she wishes she'd had such a chance.

In any case, that is a difficult question after the event: it is hard for a mother retrospectively to wish away a living child who, come what may, she loves.

But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom's had been a life unlived?

Unequivocally, yes.

8 comments:

Snup said...

I'm not surprised by this in the least. Children after all, are an inconvenience. What kind of person is this reporter, not even trying to help out but criticizing? Some friend. I notice she didn't suggest any solutions other than abortion.

Anonymous said...

I am definitively against abortion and believe that God has a reason for each of our lives. I did have a severely physically and mentally challenged child who died as a young adult. It was a difficult life for our family in the extreme. People were always telling us what a blessing our situation was but never seeming to notice just how hard it was. I think people who don't have such children like to call them a blessing to ease their guilt. Then they can go on about their lives without feeling they need to offer any assistance.ve

cmziall said...

AND, in the last paragraph, "a relatively dispassionate OBSERVER" okay, who are they to say "YES, everyone concerned would be better off if Tom's life had been unlived"?

As a mom to several active boys, I can't even imagine what this poor family has to endure day in and day out. Saying that, who can judge them without ever having been in their shoes? We have no idea what Tom's purpose is here and it is not our place to judge or "remove him" from this life.

It says in the article that the mom loves him.. . .maybe that love will win in the end.

Anonymous said...

I think Snup raises a good question - who is the person who writes this? Someone who apparently is close enough to this family to know personal particulars, but not to offer any sort of meaningful help? This child's (and others like him)special needs are pronounced hopeless and judgement passed by the writer that death is preferable? Cath need to reconsider who her friends are, in my opinion.
Just Passing By

Alison said...

I am the aunt of a severely autistic child. I do see how hard it is and do believe that it has changed my sister's family forever. My nephew's parents are two of the smartest people I know and now instead of seeing their brilliance, I see a model of faith, hope and charity. They are literally tested 24/7. It is true they never get a break. The amazing thing is that I have never heard them complain. I haven't even heard her yell and she has 3 other children.

On a recent visit back to the Midwest, my sister was talking about a book she read written by a woman in the 50's who had a child with CP. It was hard to even get a diagnosis for it back then. They went to all kinds of doctors looking for help. They went to one doctor who recommended a method used in China. The parents of the CP child exclaimed they would try anything until he started talking about taking children up the side of the mountain and leaving them. Of course, these parents were horrified by the suggestion of euthansia but the mother does suggest that murder /suicide in these situation was not uncommon back then. So is this where the author of the piece you post leading?

Anonymous, I am sorry for the loss of your son.

Latinmassgirl said...

Since autism is now on the rise, there should be answers to the question; why? Autism was very rare years ago. Some parents have healthy, normal children whom suddenly exhibit autism after certain immunizations.

That shouldn't be discounted, especially because of number of immunizations children are getting now. We may find out someday that in order to avoid certain diseases that usually don't even exist in our country anymore, we are damaging their bodies.

Alison said...

Latinmassgirl,

My sister's child with autism was not immunized. Further, the number of diagnoses for mental retardation is way down. The decline in this matches the rises in autism.

Latinmassgirl said...

Alison,

Are you saying that children with autism were misdiagnosed with mental retardation in the past?

Maybe another thing can be misdiagnosing the milder cases as autism. This happened to my niece, who was misdiagnosed with autism as a two year old. The overzealous state workers swooped down upon my brother's family and continued the charade of therapy for over a year.

Maybe the uprise on learning disabilities is really what was diagnosed as mental retardation years ago.

One could also speculate that mental retardation could be down because unborn children with Downs Syndrome are cruelly aborted.

I still am still concerned that some immunizations could be responsible for the some cases of sudden onset of autism.

We can only pray this mysterious robber of children's minds will be identified in the near future.