Life, Autism, Disability, and More

Tag Archives: empathy

white roseI don’t want to, and don’t mean to, take away from the tragedy that happened in Lake Jackson on the 5th. A five year old girl was hit and killed by a truck. It was a freak accident. The girl was walking behind her father. She stopped and got down to look in a storm drain. She was too low to be seen by the driver.

It’s horrible.

I cannot image the pain that goes with having your child die. Especially in such a sudden way. Especially in a way that can lead to you blaming yourself.

Think about it: you turn your back for half a minute. You miss seeing that your child has gotten down on the ground. You don’t see that your child is in danger. It takes almost no time at all.

You will potentially feel that guilt for the rest of your life, I would imagine. I could only think that it’s nearly impossible to erase the feeling. Even though it isn’t your fault, even though it was just a momentary lapse – one that every parent has every day, multiple times, probably – it is the one lapse that will never go away. Never be forgotten.

This is a fear of so many parents and caregivers of those who love someone with autism.

It’s a real fear, a daily fear, a constant fear. A terrifying aspect of autism.

Children, and adults, can decide to run for no reason or for some unknown reason.

Simon is afraid of birds. Hearing birds, seeing birds, sensing birds…that can set him off. We have a handicapped tag to make sure that, on days that when the birds are converging, we can park close by and don’t have to worry about him making a break for it across the parking lot.

But not everyone can do that.

And not everyone can hold onto the person that wants to run. Or keep an eye on them 24/7. There are lapses. There are moments. And they are the scariest parts of the day.

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Halloween 2013

Halloween 2013

What’s the cut-off age for Halloween?

When I was growing up, I didn’t worry about it. No one really commented on it (to me anyway), and as I got older, my costume got more complex. When I was 17 and dating, my boyfriend – now husband – actually made me up as a car accident/fire victim, going so far as to cover an eye with a patch and making me look all bloody and raw and burned. It was awesome.

But nowadays, I hear grumbling. I hear people complaining about kids who are “too old” or “too big” to go trick or treating. There’s the old joke about “if you can shave, you’re too old to go trick or treating.” The thing is, some boys start shaving when they’re 12 or 13. Is that too old to trick or treat?

The real worry that I’m bringing up here isn’t actually about general trick or treating. It’s about Simon.

He’s 12 this year. He’s not exactly small for his age, either. He’s in the 6th grade (should be in the 7th, but he was held back a year in kindergarten), and he’s definitely going to need to shave within the next year or so. Puberty is setting in.

He loves Halloween, though. Super duper loves it. He just brought it up to me again, and I had to tell him (for the eight-thousandth time this week) that it is on Friday, and that we can go trick or treating after school. The actual plan is to go trick or treating at the mall after school, and then hit the neighborhood around dinner time.

Will he be able to go?

Will people make snarky comments? Refuse him candy and other fun Halloween goodies?

I don’t know how he’ll feel about it next year, but what if he still wants to go? Will we have problems? Will we not?

I hate to quote the Doors, but the future is uncertain…and is the end of Halloween near?


Image(First, apologies to the person who did this – I am not trying to insult her in any way or judge her choice.  I just want to offer my viewpoint on her decision.)

Over the summer, I went to a wildlife park with a friend.  I brought my son; she brought her granddaughter.  My son was 11.  Her granddaughter was 5. My son is autistic.  Her granddaughter is typically developing.  She was friendly, she was happy, she really thought it was a great time, and she totally wanted to interact with my son.  But he wasn’t so interested in her.  He wanted to look around, he wanted to take the tram ride, he wanted to pet the reindeer.  He ignored her, though.  He rebuffed her.  She asked questions; he didn’t answer.  She offered him things; he looked at her and didn’t respond.  That’s when I found out that my friend had told her granddaughter that my son was “shy.”  She wasn’t sure how to explain that he was autistic.  Or maybe she wasn’t sure if she should tell him.  Or…well, I don’t know why else she wouldn’t have told her.  Regardless, part of me want to scream and shout.  Part of me felt that I had no right to push the information, though.  It wasn’t my granddaughter.  I couldn’t tell her that her grandmother had lied, and I couldn’t tell her that her grandmother was wrong.  My friend obviously had her reasons.  I just disagreed with them.

Why?

If we don’t tell our children (or grandchildren, as the case might be) about these differences, then we have problems coming in the future and in our present.

But first, let me look back just a few years.  It somehow reminded me of an episode of Quincy.  Yes, Quincy, M.E.  From the 1970s.  1978 to be exact, in the episode “A Test for Living.”  The episode had a small boy who was autistic, and he ruined his sister’s birthday party by his autistic behaviors.  Quincy just happened to know about autism (because, apparently, medical examiners are totally up on the new medical diagnoses in the field), and he went and tried to help the family.  Meanwhile, the family wanted to lock the kid up in an asylum because they couldn’t handle him and he had all these problems.  And Quincy argued for keeping him in the home and helping him because he’d had to do an autopsy on someone else who had been placed in that asylum, also for apparent autism.

What does that have to do with this problem?  Lack of knowledge.  If we don’t tell people about autism, they don’t know about it.  It’s just that simple.  And in this case, it was purposeful and unnecessary ignorance.  The knowledge was had, and it was withheld.  Why would you choose to keep a child in the dark about something that could affect them?  Especially because it did affect her.

Which leads to the second problem – a lack of understanding.  She didn’t understand why he was the way he was.  She really didn’t understand why Simon wouldn’t play with her or talk to her.  She didn’t understand why Simon was sitting there, repeating phrases from television shows, ignoring some of the animals, not looking when I tried to point things out to him, only answering simple questions about the names of animals and other things like that.  She couldn’t understand why he didn’t care if he got to feed the animals or not.

Which then leads to the third problem – a lack of empathy.  If you don’t understand why someone is doing something, or why they *have* to do something, then you don’t feel for them, either.  People understand what having cancer is like.  They feel for those who have it, they feel for the pain they go through, they feel for the treatment and the pain it causes, they feel for all those things.  But if someone didn’t understand what cancer or its treatments were like, how could they have empathy for them?  They couldn’t.  Without understanding, there can’t be empathy.

Which leads to the final problem – bullying.  No knowledge. No understanding. No empathy.  It must be time to bully someone!  Okay, so maybe those aren’t the only things that cause bullying.  Bullying is far too complex to cover in a single paragraph, and it’s far too complex to break down to just a few causes.  And I don’t mean to say that my friend is causing it, either.  Her granddaughter seemed caring and feeling, and I don’t think that she would have made fun of Simon, regardless of her lack of knowledge and understanding.  But I do think that these things do help build that basic framework that leads to more problems and that leads to bullying.

So, in my title, I said “what to do when people lie about your child’s autism.”  Honestly, I don’t know what to do.  My preference is to educate them so that they don’t lie anymore.  Any maybe this blog can be my first step to doing just that…


Sympathy Wreaths by AcrylicArtist at morgueFile.com

Sympathy Wreaths by AcrylicArtist at morgueFile.com

Once upon a time (about a week ago now), a “pissed off mother” wrote a letter that went Internet-crazy.

Obviously, this letter was just a wee bit upsetting to all of those who have children with autism or other developmental disabilities.  It took me a while to form a response, but now that I’ve calmed down, I wanted to respond.  It *needs* a response.

First, I can’t blame this mother for sending it anonymously.  If I had written something with punctuation that was that bad, I wouldn’t want anyone to know I had written it either.  (Joking.  Humor helps, right?)

But to get to the serious part, I feel sorry for the mother who wrote this letter.  Genuinely sorry.  Sorry for her and the life she leads.  The life she’s going to lead.

She needs to think about the lesson she’s teaching her children.  She needs to remember that her children will be the ones picking her nursing home. And that’s not a joke.  I’m not being facetious.  The letter she wrote shows a distinct lack of caring for those who aren’t “normal” or behave oddly.  According to one Alzheimer’s website, the risk of someone developing a form of dementia is one in 14.  If she is that one in 14, her children will fear her and revile her, just the way she has taught them to.  She shouldn’t be surprised if she finds herself in an inexpensive nursing home with no visitors and no one coming to her grave after she dies alone.

We reap what we sow.  She has made it clear that those who are imperfect are not worthy of love or even simple human dignity.  She will have that experience herself one day, and perhaps by then it will be far too late for her to change her mind or teach her children differently.

That’s why I feel sorry for her and the life she leads.  I also feel sorry for her children.  Perhaps none of them will ever learn to appreciate the simple things in life or even life itself.  She won’t read this.  And she wouldn’t care or understand even if she did.  And for that, there is no cure.  She will suffer forever.

My son may scare her, but he has empathy.  He would feel bad about scaring her.  She, on the other hand, scares me.  She doesn’t feel bad about scaring people.  And she doesn’t know why that’s wrong.

Autism can be coped with.  What’s wrong with her, however, can’t be.  She may be able to pretend she’s normal sometimes, but her letter makes it clear that she does not possess human emotions.  And for that, I feel sorry for her.  I have to hope that other parents of autistic children can find it in their hearts to feel sorry for her, too.  Because while her letter might shock us and hurt us, we have the strength to move past it.  And she never will.