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Asperger’s, Austism, Rotary Phones, and VCRs

What do those 4 things have in common?

Depending on what generation you grew up in, you might not believe in the first two— or the last two!

Does that mean that they are any less real?

Of course not.

As a 28 year old woman, I don’t remember not having color television, making local phone calls using an operator’s assistance, or not having a family car.

As a 9 year old girl, Chloë doesn’t remember the days before cell phones, internet, or cable tv.

As adults, Marley & Killian won’t remember VCRs, CDs, having to watch tv shows at the time/day they actually aired, or ‘back when your phone wasn’t also a computer’.

These things are a blessing and a curse. The technology we have now is AMAZING! There are things I never thought I’d see, though I still wish that were at the point of every family living like the Jetsons! (Instant meals, automated showers, flying cars….)

(image courtesy of Wikipedia)

However, it does mean that there is a sense of entitlement and Heaven forbid there is a power outage! I kind of wish Chloë knew what it was like to wait for a song on the radio so she could record it on a mixed tape. I worry that Marley and Killian won’t remember reading actual paper books.

Of course, none of this means that these things are any less real. The world is constantly changing and we’re finding so much new information by the second!

I don’t remember the plague, Polio, measles, or other medically specific conditions that existed in previous generations, but I don’t discount their impact. I don’t scoff about how “We don’t have that NOW… maybe those people were just mentally ill and suicidal and convinced themselves/doctors that something was wrong. They probably shouldn’t have tried to treat it, since it was all just an excuse to take a break from field work/school/etc.”

Lack of understanding/knowledge/experience/observation of such things doesn’t negate their validity.

No one argues that AIDS doesn’t exist just because it didn’t originate until the late 19th/early 20th century.

Millions of people are on meds for depression/anxiety (myself included now, actually– but that’s a whole OTHER post, lol!), but I’m sure that in 1764 no one could imagine such a name for things (that while they likely existed then were swept aside), much less the ability to overcome them with medication.

Why is it then that these children– MY CHILD– is seen as ‘poorly parented’? ‘Undisciplined’? ‘Hyper’? ‘Overly dramatic’? ‘Poorly behaved’? ‘Disrespectful’? ‘Willful’? ‘Stubborn’? ‘Rude’? ‘Impolite’?

Why is it that when I choose to creatively redirect to attempt to avoid or diffuse a meltdown, I’m seen as a ‘pushover’?
When I don’t scream at her as she complains that the meat or dairy aisle in the grocery store is ‘too cold’ no less than 1,000 times, but instead promise her that we’re ‘almost done’ and offer to leave the area for a few moments to get another item, why am I seen as ‘letting her run things’?
When she refuses to eat nearly every food I fix for the rest of the family or when I pick a restaurant based on what I hope she may be able to eat there, why am I accused of ‘not being in control’?

Just because Autism/Asperger’s were not a part of your generation or if the knowledge is simply new to you, why would you discount it as ‘not existing’ or blame it on my lack of parenting skills?

I’ve managed to raise an amazing 9 year old girl against all kinds of odds (teenage mother, single mother, working mother, shared custody that isn’t always shared fairly) who is now in math an entire grade level above where she should be, is a straight A student and most importantly she is compassionate, healthy, and loving. Of course she is 9 and has her moments; we all do. The point is– if anything, my parenting skills have gotten BETTER. I breastfed longer, am a stay at home mom married to a great man, I discovered babywearing and full time co-sleeping…. how would you think that I could make choices that would create an older neurotypical child yet those same/better choices would later create an autistic child?

My Girls

Today my facebook status at one point was “Tweaking my pandora halloween station while i clean…… avoiding the (COLD!!! NOOOO!!!!) grocery store.. ” and a friend commented asking if the weather today was cold and followed up with her lightbulb moment where she remembered that Marley hates the cold aisles.

I don’t expect everyone in my/Marley’s life to remember every detail about what she is sensitive to– that’s my job, it’s a HARD one, and it changes by.the.second.literally.

I do expect to be supported. I do expect to be respected. I do expect questions (even if I don’t always have the answers).

I will not allow my child to be set up to fail. I will not tolerate her being shamed for things she cannot control. I will gladly educate a lack of knowledge, but I will not subject myself, her, or her siblings to willful ignorance.

I do my best to discourage inappropriate actions that she exhibits due to age or imitation (of other children in her life or media).  It is a hard, thin, not so straight line I walk when trying to discipline effectively, appropriately, and consistently while not punishing her for things she cannot control (meltdowns that seem to come out of nowhere or reactions to things she deems ‘itchy’, ‘tight’, ‘cold’, etc).

Punishing Marley for meltdowns or reactions to stimuli/triggers/sensory input is like smacking someone for coughing when they have the flu or sneezing during allergy season. Right now, her (intense) reactions are as automatic as breathing. I’m doing what I can to teach her to regulate her behavior when things are uncomfortable, but she is at neither the age or maturity to grasp every single concept and distraction technique I present her with.

I apologize in advance for those times that this means she will scream/cry/grit her teeth/shake with frustration/lash out in your presence. I apologize if it makes your dining experience unpleasant. I apologize if it means you don’t want us to come over. I apologize it it makes you uncomfortable. I apologize if it makes you sad for me– you shouldn’t be. I apologize if she hurts your feelings by being brutally honest in an inappropriate or impolite manner– if it makes you feel better, she tells me I’m “almost fat enough to have a baby” and that I’m ‘squishy and comfy’.

There are many things I can apologize for. Unfortunately, there are many more things I can’t.

I can’t apologize for your judgments. I can’t apologize for walking away when I hear you talking about her none too quietly as she wears a formal dress with a hoodie 3 sizes too big with leggings and actual leather ballet shoes. I can’t apologize for the fact that she’s right– we are overweight and yes, she does notice that pimple on our chin.

But the things that bother me the most that I can’t apologize for….

I can’t apologize to HER enough to make your reaction sting any less. I can’t apologize to HER and make her ‘normal’ (neurotypical). I can’t apologize to HER and take away the itchiness. I can’t apologize to HER enough for her to forget about coming to your house. I can’t apologize enough to HER SIBLINGS for them to accept that some people are just not accepting and that somehow a 9 yr old girl understands more about Asperger’s than most adults I encounter.

Recently we made a weekend trip to Washington, D.C., and visited the zoo there. A few days later, Marley came into my room when she woke up in the morning and said “Mommy, what does ‘hyper’ mean?”. I asked where she had heard it and she replied, “At the zoo. There was a little girl and she wanted to come play with me and I wanted to play with her, too, but her mommy said No– that I was ‘too hyper’.” My heart broke as I told Marley that hyper meant ‘playful’…. she just couldn’t understand why a person would see that as a bad thing and why that mom wouldn’t let her little girl come over to see Marley…. That is something that I definitely can’t ‘apologize away’.

If this post has made you stop and think– if really want to understand Marley, read the following links and watch the video at the end of this entry. If you have any questions, feel free to ask me… whether it is via this blog, on the facebook page, or in person.

Link 1: http://life-with-aspergers.blogspot.com/2007/11/aspie-meltdown-insiders-point-of-view.html 

“Meltdowns and Punishment–
One of the most important things to realize is that Meltdowns are part of the Aspergers condition. They can’t avoid them, merely try to reduce the damage. Punishing an aspie for a meltdown is like punishing someone for swearing when they hit their thumb with a hammer. It won’t do any good whatsoever and can only serve to increase the distance between you and your child.

In addition, meltdowns aren’t wholly caused by the current scenario but are usually the result of an overwhelming number of other issues. The one which “causes” the meltdown is the “straw that breaks the camels back”. Unless you’re a mind reader, you won’t necessarily know what the other factors are and your aspie child may not be able to fully communicate the problem.

Meltdowns are part and parcel of Aspergers – they are NOT the result of poor parenting”

Link 2: “10 Things Every Kid with Autism Wishes You Knew”. Since Autism is a spectrum disorder (and Asperger’s is on the ‘high functioning’ end of that spectrum) you may not recognize every single quality in Marley.

This video shows what a teen girl with Asperger’s experiences when she is in sensory overload. I feel like this is where Marley is when I see her start to have an emotional reaction to something uncomfortable for her or when we have overstayed our ‘welcome’ –time she can tolerate– in a store (or even in someone’s home).

-Carmen

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2 responses »

  1. I feel for you. We have the same issues and I feel the same way!

    Reply
  2. Pingback: The Others « "Marley, stop…"

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