"When your special needs child becomes a special needs

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conundrum
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06 Aug 2014, 5:50 pm

http://theweek.com/article/index/265762 ... needs-teen

The author's remarks at the end seem to indicate that she appreciates and embraces her child's differences...an attitude I find refreshing. :)


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pezar
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06 Aug 2014, 8:08 pm

What shocked me, but shouldn't have, is the doctor telling her how rich parents in NYC do a battery of prenatal tests, and abort an "abnormal" baby. :roll: :evil: God forbid that your child not be perfect in every way, not excel in the right ways, not get into Harvard at 16 and become a hedge fund billionaire by 25, all to make YOU happy and to set out the plan YOU have for HIS life instead of his own plan. God forbid she have cerebral palsy, or Downs, or autism. She's better off dead than disabled and not rich, right? :evil: :evil: There is so much fail in such an idea that it's hard to wrap one's mind around it.



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06 Aug 2014, 9:30 pm

Great article! I love how "real" the author is about the shock and sadness parents can feel in the beginning, and she shows how they all evolve as a family over time. Her attitude at the end of the article is very touching and resonates with me. Just following your child's lead is key. It's true that when you stop setting arbitrary goals and expectations and just delight in your child's fun, life is much easier! I credit my dh with forcing me to stop trying to make my dd change, and instead try to find positive things to enjoy with her. That's the foundation now (what she loves, what she is good at, who she is) and all the learning just builds on top of it.
J.



AmethystRose
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07 Aug 2014, 12:33 am

Thank you for sharing this article. It felt good to read it. :)



conundrum
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07 Aug 2014, 12:49 am

AmethystRose wrote:
Thank you for sharing this article. It felt good to read it. :)


You're welcome. :) It was nice to read something positive of this type.


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cyberdad
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07 Aug 2014, 1:59 am

As a parent myself I find articles like this one seem to revolve around the NT parent rather than the autistic child
The mother finishes with **I am lucky. I am grateful.**

This sounds like cognitive dissonance to me as the article is riddled with her self-consciousness and regret...
She remembers how her husband was crushed to the point of tears on hearing of their daughter Erin's diagnosis
She has little faith in Erin ever demonstrating intelligent thought
She moans about Erin being unable to buy a coffee?
She seems to indicate they had more kids so at least one of them will look after Erin
She reveals that she's terrified that she can no longer hide Erin's autism from the world anymore

What about Erin? I'm more interested in Erin's life? is she happy? does she have friends? does she like Animals. I wish the mother would write about how great it is to have a child like Erin instead of apologizing for bringing Erin into the world.



trollcatman
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07 Aug 2014, 3:14 am

The doctor suggested having more children, so that those children can later take care of their older sister. I find it quite creepy that someone is born for a specific purpose. Who says they want to stick around to take care of their big sister?



League_Girl
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07 Aug 2014, 10:52 am

I can't believe a doctor would encourage that for parents. I know it does happen when parents expect their kids to look after their disabled sibling and take care of them and the kids can't have their own life even as adults because they would still have to care for them when the parents no longer can anymore. Then the parents try and guilt them for it when they don't want to do it.


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07 Aug 2014, 6:41 pm

Well, it's true that the article is "all about the NT mother" because it's from the mother's point of view. It's her story and her feelings. It's very hard to know if our children are happy or "how they're doing" in general. The article shows the kind of process parents go through when they are trying to figure that out, and trying to predict the future, which is impossible. I think a lot of parents of kids on the spectrum do that. It's a bit of a shock when you are told by a doctor or read in a study that your child will probably never be able to talk or live alone or get married or whatever it is. I was so heartbroken for my dd when I read the statistics... I don't believe them now, but that's because she has grown and developed so much. It could have been different. That's why I think the idea of walking down the street and ordering a coffee was a really good way of getting that across... These are everyday things parents take for granted that their kids will do; they symbolize independence. My reaction when I read that was to think, hey, I know my dd will be able to do that; she can do it already (or could if there were a coffee shop within walking distance). However, I don't know if she will fall in love, be able to sustain a marriage or caring for a child of her own or go to university or keep a job. In theory, we should just live our lives day by day, but for me (an INTJ :-)) I always dream about the future, and it's hard to think she might not be able to do the things she talks about now and watches her siblings do.
It would be great if Erin wrote her own story, of course.
Have you written yours?
J.