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Posts Tagged ‘Autism’

The girl behind the mask is small and delicate.
Delicately navigating the day to day
Daylight comes and she settles in
Into the dark recesses of her mind.
Mindful that she looks normal
Normal people don’t know
Know what it’s like to feel like an alien.
Alienated by many for her strangeness
Strangely she cares
Careful not to offend anyone
Does anybody care?
Care to help rather than point?
Pointless to explain.
Explaining is exhausting
Exhaustion sends her deeper
Deep into the dark, safe places in her mind.

Do you know someone with Asperger’s? They are beautiful, creative, very smart people. They have quirky habits and don’t always understand things right away, but they feel very deeply and just need someone to reach out to help and guide them. I was that little girl once. I still am, but with the help of great friends I’ve got the world fooled. They think I’m normal and I am so glad I’m not.

photo: jjroyce @glogster.com

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I am really fed up with neurotypicals, aka NTs, aka “normal people” announcing how they’re working on the cure for autism – how a gluten-free diet will make your symptoms go away – and how traditional therapy actually works.  Really, people.  Really?

Hey, if you’re on board with all that stuff then good for you…  We all like to be in our safe zones even if people think it’s stupid. Image

Listen.  This isn’t to Yuk your Yum but I’m just going to share some of my own thoughts and feelings on the subject so forgive me if this sounds defensive.  I really want to be informative and helpful to someone else, who, like me, is kind of assimilated but definitely not cured.

Society, as a whole, is chock full of lemmings who blindly follow along because they want to fit in and belong to something greater than themselves.  “Society” is defined as an aggregate of people living in a more or less ordered community.  Let’s expand a little more.  Community includes your workplace, home, neighborhood.  Community can also be defined as your social status, your interest groups, your state, and even your country.  Community can even be as broad as “people of the free world” as opposed to “people under the tyrannical rule of a ruthless dictator.”  The idea of community is bringing together people with shared…something. 

THE CURE

Phew!  Okay.  So for me to fit into your community a few things had to happen.  I needed to learn what made you happy enough to include me in your little group.  

  • Thou shalt not throw tantrums in public.  
  • Thou shalt not scratch an itch in mixed company.  
  • Thou shalt stay silent until someone asks your opinion – and then thou shalt not always tell the truth because it might be cruel or insensitive.  
  • Thou shalt dress appropriately for the occasion.
  • Thou cannot be a stinky bastard so washing and grooming is important. 
  • Thou shalt learn social cues (when they smile, you smile – when they frown, you pretend empathy – when they are upset, ask them if they want a hug).

See?  I can play along and I’ve got everybody (except for my friends and family) completely fooled.  Does that mean I’m cured?  Hell, no.  It is completely exhausting venturing out into your world!  

Quick example:  When I worked in retail I had to be pleasant to everyone and smile all the time.  Imagine telling yourself to raise the corners of your mouth, show off your dimple (that took practice in the mirror), show a little teeth (but not too much), and crinkle eyes just enough to make a “genuine” smile.  Sometimes my face would freeze like that because I forgot to tell my face to relax when no one was looking.  My customers have no idea how mechanical I must be to greet them – and sometimes it really is a genuine smile.

Essentially – the CURE is having an autistic person learn behavior, coping mechanisms, and physical and social mannerisms so that you aren’t uncomfortable around the weird kid.

DIETS

Don’t you love marketing?  

EAT GLUTEN-FREE AND YOU WILL BE CURED OF AUTISM!  YAY!  

Except it’s not true!  At least not for me.  I like what I like: tastes and textures.  All in all I consider myself an adventurous eater.  I’ll try anything once.  So unless the food directly affects my neurotransmitters, changes my genetic makeup, or mutates the autism out of me, my diet only nourishes my body and either keeps me healthy or makes me fat.  Let the Celiacs worry about the gluten.  And that’s all I have to say about that!

TRADITIONAL THERAPY

I’ve been to a few therapists – for myself and with my son.  Tell me:  how is a one-on-one 45 minute session in an office going to help a person who has no social skill, doesn’t like to talk to strangers, is uncomfortable expressing themselves, hates talking about their screw ups, and doesn’t want to relive the hows and whys of being teased?  HOW?

Traditional therapy simply does not work.  You want to help your autistic kid?  Get a social advocate and life coach!  Nothing makes me more anxious than the unknown.  I absolutely HATE firsts.  I learn by example, trial and error, and I am perfectly happy to live vicariously through others.  

A life coach can lovingly (and patiently) explain something as simple as how to properly answer the phone, the importance of hygiene, explaining why sweatpants is not appropriate for a job interview.  Take them to the mall and observe people.  Watch the mannerisms and social interactions from a distance.  

As a child I abhorred going to the mall but it was bearable because my sister and I played games.  Based on what people were wearing we had to make up a story about them; based on their animation (talking with their hands) we made up dialogue.  Doing this took me out of my tunnel vision and forced me to look around and use my imagination.  If I was getting overstimulated I went to the bathroom or the nearest changing room and tried something on.  

FINAL THOUGHTS

Aspies are creatures of habit but we don’t get comfortable until we’ve tackled “the firsts” and realize it didn’t kill us.  With that being said – and it is just my opinion – unless you live it don’t assume we need to be cured.  We want to be accepted but we need to feel safe first – so take your “cures”, diets and traditional therapies; take your condescension and comfortable superiority and kindly SHOVE IT.

 

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ASD

An example of the very literal child

~ Never take comprehension for granted
and never make them feel the fool.
~ It’s very hard to live one’s life
when you already feel like a tool.

 

This is only a tiny excerpt of what I had originally posted on April 12, 2014.  To read the entire article, kindly follow the link.

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Living with Asperger’s is never easy.  Stepping out and dealing with new situations is often a daily challenge.  Even when armed with years of learned coping skills that sick feeling in the pit of one’s stomach is ever-present.

Add the challenge of job hunting and interviews is distressing for most – but tenfold when living on the autism scale.
By outward appearances they look normal until they’re in a social situation.

If you are in a position to hire someone, this is a must-read, especially when faced with a quirky prospect.

10 Good Reasons to Hire a Person with Asperger’s

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My son HATES therapy.  He thinks I’m trying to change him.  He believes I am trying to mold him into something he’s not.  I really wish he would understand that the things I do for him are to give him the tools to be an independent and confident young man.

So what I did was put together a list of goals of which he must accomplish in his own time before I would even consider ending therapy.  I might make note that he said no and hell no to everything on the list (and just as a side remark, I did invite him to help me create the list & he did not) – and here they are:

SOCIAL GOALS:

* Invite friends home to play or hang out (at least 2 times a month)
* When invited to a friend’s house ACCEPT the invitation
* Attend a school dance
     (you don’t have to dance, but go with friends & hang out)
* Join an after-school club or sport

SCHOOL GOALS:

* Ask for help if you are confused or lost.

Remember: The difference between a stupid person and a smart person is: A stupid person THINKS they know all the answers.  A smart person will keep asking questions TO LEARN MORE.

HOME GOALS EVERY DAY:

* Keep your bedroom door open at least one hour in the evening.
     (You don’t even have to be in it.)
* Ask the adults in your life how their day was.
* Share/Express at least one good and one bad thing that happened to you.
     (could be something as simple as a new person saying HI to you – good)
     (could be something as silly as tripping on your shoelaces – bad)

HOME GOALS AT LEAST ONCE A MONTH:

* Plan a week’s worth of dinner menus (with mom or Pat’s help)
* Grocery shop for your menu (with mom or Pat)
* Find an old favorite or new dessert recipe & make it for the family

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Picture day at elementary school was always a gut cruncher for me. 

I already knew that Brandon was going to argue about what to wear.  Please, Lord, let him wear something other than sweatpants!  I admit I let that argument go a long time ago when he very logically explained that pictures only show him from the waist up.  Is he going to brush his hair?  Better yet, is he going to let one of the school aides brush his hair – you know, because pictures were ALWAYS after recess!

No, no, even that wasn’t so bad to deal with.  The biggest thing for me was Brandon’s beautiful smile.  I know he’s got one.  On rare occassions, I’ve even seen it!

So in a patient, loving and almost desperate plea, I would say, “Now, Brandon… When the guy is taking your picture, just smile!  Say cheese, ok?”

He always rolled his eyes, and I would take a deep breath and put him on the bus – then a passing thought, “I hope the pictures are acceptable enough to pass along to family and friends.”

Invariably, I get…

Cheeeeeese

Brandon in 5th Grade

Ok, nevermind, Brandon.
You don’t ever have to smile for school pictures again.
Mommy loves you!

XOXOX

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You know what they say to do when you’re on fire: Stop, Drop and Roll.
It’s the same thing, with a twist, when you’re dealing with an Aspie child, whether there’s a “fire” brewing or you’re in the midst of a 4-alarm blazing tantrum.

The best advice I can give is:

Stop It. Drop It. Roll With It. 

Whether you believe it or not, these kids hate conflict as much as the next person. Now don’t get me wrong, my child will argue a point with me until my hair hurts. He strikes his brothers when they rile him enough. He’s had fights in school because he felt wronged in some way.

Hmm… Can we say behavioral problems? Unfortunately my son didn’t have the benefit of an early diagnosis, and certainly no Early Intervention (E.I.), but we are making progress by leaps and bounds with these three simple steps:

STOP IT:  You’re trying to make a point.  He says you’re nagging.  You try to word it another way.  He’s blocked you out and stopped listening.  You’re getting frustrated and losing your temper.  He’s hit the “F.U.” stage and now you’re both toeing the adrenaline pumping, blind rage, full-blown tantrum line. The flames are spiraling out of control. STOP IT.

You, as the parent, MUST shut up. I know it sounds harsh, but it works.  They say “Silence is Golden.” I say, “The Silent Treatment’s a MIRACLE.”

Now, shut up doesn’t mean shut down. 

You just need a quiet moment to regroup and get yourself under control. 

DROP IT:  Once you’ve taken a moment to be quiet – drop it. Drop your tone of voice and your shoulders. Whatever the tantrum was about is secondary to getting back into control. Quietly, but firmly, make a matter-of-fact statement. Here are some examples that work for me: “I am not arguing about this anymore.”  “I do not accept being yelled at by you.” “I am walking away from this and we will talk about it when we are calm.”  “You may calm down here & now, or you may go to your room.”

Let’s translate this a little further:

  • “I am not arguing about this anymore.”  – I am regaining control and this subject is now closed because I said so.
  • “I do not accept being yelled at or spoken to like that.” – Don’t talk to me that way, I’m your mother.
  • “I am walking away from this and we will talk about it when we are calm.” – Now that I’ve gained control, we will revisit the situation/subject when I’ve fully assessed the situation & planned the next course of action.
  • “You may calm down here and now or you may go to your room.” – I give you permission and empowerment to choose your path.

ROLL WITH IT:  Don’t dwell on the argument. What was said in the heat of the moment shoud not be taken personally. Everyone says and does regrettable things.  Spew happens.  Whatever the fire was about, you’ve stated your intentions, regained control of the situation and empowered your child – now just roll with it. 

Hindsight is 20/20.  Most arguments I’ve had with my son stem from a communication gap. By stepping away from the situation, it gives all parties an opportunity to hash the events out in our brain. When I revisit the subject we were arguing about, 8 out of 10 times we come to a respectful and mutual understanding – even if it’s agreeing to disagree.

If you practice Stop Drop & Roll, you may be pleasantly surprised by how far and few those fires will burn in the future.

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