Post It Note Tuesday

I’m almost out of Tuesday and haven’t done this for awhile…but it’s my favorite blog day!

And if you love the stickies…go read more or make your own:

We All Need to be Understood

After my little vent yesterday I thought it would be good for me to repost this 2009 blog entry just to keep it in perspective.

Autism is a puzzle with more curves, corners and pieces than any of us know.

One of the hardest things for people with AS is empathy. Coupled with the inability to appropriately initiate social interactions, children with AS have little understanding of how their actions and words affect others. Most neuro-typical children struggle with it, but can be easily taught to imagine how someone else feels. AS kids can’t imagine that.

On the other hand, all relationships are reciprocal. So, those of us who interact with someone that has AS need to also be able to empathize with how THEY are feeling or seeing or why they are behaving the way they are behaving. Only, we can’t. We can’t imagine that.

Imagine that sounds are painful. The vacuum cleaner sounds like a fire alarm. The fire alarm sounds like a jet plane. The water gurgling through the radiator stops you from wanting to play in your room alone.

Imagine that being in a crowded room or restaurant makes you want to spin in circles and hide under the table. If someone strange sits near you, you won’t be able to finish the meal. You’d rather just make loud silly noises to make yourself feel better.

Imagine that only six or seven foods taste good to you. Maybe it’s not the taste…but they feel and smell safe, so you’ll eat them. Imagine that you could not try new foods, even if they are pretty ones, because you don’t know them.

Imagine that you can’t understand what people’s faces are saying. They get all twisted up, twitching, smiling, frowning all the time they are talking. They want you to look them in the eye, but if you do that you won’t be able to concentrate on what they are saying. It hurts to look someone in the eye. Sometimes you can’t hear the words because you are too busy trying to figure out the look on their face.

Imagine that collars, tags and zipper pockets make your skin itch. Your Mom bought PJs and the “out parts” of the sleeves are too tight on your wrists. Makes it hard to fall asleep.

Imagine that you couldn’t tell when someone didn’t want you to touch them anymore. You like touching people’s clothes or licking them or blowing on them or just getting as close as possible. Why won’t they let you do that? It’s how you tell someone you like them a lot. How else are you supposed to do it?

Imagine that you can’t answer open-ended questions without anxiety. So instead, it feels better to just say “AAAHHHH!!!!” Why does everyone want to know if I “like school” anyway? I don’t know.

Imagine that making changes or transitions from one thing to another is really, really hard for you. All you need is a little warning that something else is going to happen next…but most people won’t do that. Imagine that taking an alternate route home to avoid traffic would make your world spin out of orbit for a while and you’d cry a lot about it.

We could all use a little empathy.

Post-It Note Tuesday

Tuesday again…one of my favorite blog days!

The following Post-Its are dedicated to my nearly 14-yr-old son Liam. He was reading through the last few months of my bloggy blog and remarked at the decidedly one-sided nature of much of what I’ve written. Yes, it’s true…I have spent much time discussing Colin and Liam felt that was unfair. He wanted his own page. He wanted some recognition. And so, he shall get some.

This child is amazingly funny, honest, kind and empathetic. He is reliable and trustworthy. He’s also quite the all-American boy and fairly airheaded.

And I love him madly.

And then, you can go read more post-its and make your own.

I’m About to Come Alive

Someday I’d like a life with some peace, tranquility and stability. I often find myself in constant flux; trying to do the right thing and make the world spin in a perfect orbit. I’ve managed for the last 20 years to narrow myself down into someone who wants to make sure that everyone is happy. That means they like me.

Well…I’m kinda done. Honestly, I’ve been “done” for awhile. A few months ago, a wise man told me I should do more to care for Myself and let other people deal with their own shit. Yes, he used the word “shit.” Yes, my insurance company paid him by the hour to help me sort through the complexities of the place I find myself in. But he was right. In the weeks that followed his mandate, I gave myself permission to be occasionally selfish. I’ve gone out with my friends more, had a few moments of “me” time and managed a whole week away from home with old friends. Yikes! But, it’s not enough. There’s still a lot of me left to reaquaint myself with. I miss me.

I watch my children intently. I don’t want them to make the same mistakes I did. I don’t want them to sell themselves short for the sake of the status quo or to just please others. But I’m afraid I’ve been teaching them that their job in life is to make sure no one gets mad. That is SO NOT cool.

So, from here on out it changes. When it’s just me and the kids hanging out for days this summer, I’ve tried to be nothing but real and honest with them. I’ve always had fun, got silly, carried on and let them explore who they are. But I haven’t modeled independance and I will, from now on out, make sure they begin to be okay in their own skin, regardless of who they think they have to please.

We live in this world to care for others and to love and nurture each person we are in contact with. But, it is not in anyone’s right to change you into someone who you don’t recognize and to manipulate you into someone that no longer thinks for themselves. I will not have my children engage in that life.

My baby boy, Colin, has brought out in all of us the need to look beyond ourselves and learn another world. Frankly, learn an entire new language…and in so doing has brought myself and my children to a place where we respect the preciousness of others and yet are now finding out how real we all are.

I have loved the following song for several years. It speaks of a hurting time between a man and a woman, but the lyrics can apply themselves to anyone who is about to realize that they’ve reached the place where they become who they really are. And the lead singer is pretty beautiful…so that doesn’t hurt!

It’s Our Fault They’re Here

Do we as grown ups know the power we have over the children in our lives? Not just our own..all of them…they run in packs.

I sat back last night and watched my youngest daughter get giddy, silly and crazy with an equally hyper ten-yr-old girl. As I watched them, I flashed back to my childhood. I was class clown, hyper, silly, whacky and fun. No “diva” in me…just total fun. These two babes embodied me and my friends “back in the day.”

Watched my teenage son and his best bud at the Globetrotters game. Torn between having fun at a crazy show and texting their friends and girlfriends. The show won out but that won’t last forever. I’m grateful he has a best friend that I trust and love. Grateful that both of them still tell me everything…how long will that last. I never told my mom anything…i guess I’m “cool.”

I sat with my little baby on my lap. Not so little. He stroked my cheek, rubbed my leg, made strange noises, took a walk, flew his airplanes and flapped his arms….but he liked the farting noises the globetrotters made.

All in all it was a fun nite. Successfully entertained multiple age groups….managed to get through the evening without a meltdown…had fun watching trick basketball…

Maybe we made some memories for them.

Either way…they live because we do…

Breathe…Baby…Breathe

Living with a child who has Asperger’s is like living with a football referee…or anyone who wants to control everyone around themselves. Tell people what to do, point out when they screw up and blow a whistle on any behavior that doesn’t jive with your world view.

Tonight I had four extra kids here while their mom went to a meeting. Lovely kids…close friends…but Colin totally wigged out cause I allowed them to play Mario Kart on the Wii, which is his domain and he is undoubtedly the expert in all things Mario.

Taking turns was tough, but they worked it out alone. We have only two Wii remotes and two Wii wheels, so Colin had to take turns with two others. The schedule of play they worked out was fair…”It’s a nice pattern, mom” he says.

However, he didn’t stop talking, advising, yelling, cadjoling or subtitling the whole event. Commentary included…
“NO!!! You messed up!”
“That’s great! Oh WOW!”
“Don’t go that way…you’re so stupid!”
“Gimme that…you don’t know what you’re doing!”

Here’s the conversation we had:

Me: “Babe, you can’t always tell people what to do. Let them play by themselves.”
Him: “But they don’t know how to do it!” Stomp feet…thrust fists down at sides.
Me: “They have fun anyway, it’s okay if they don’t win or if they mess up.”
Him: “But they are slow! They can’t do it right! They push the left button instead of the “A” button and the whole thing stops working!”
Me: “But that’s okay baby…they don’t care. It’s fun anyway.”
Him: “AAARRggghhh…..”

Here’s my imagined conversation:
Him: “Why won’t anyone listen to me? I know what I’m doing.”
Me: “We’ll listen, but won’t always do what you want.”
Him: “Why not”
Me: “Cause we all have different ways of doing things.”
Him: “But why…it’s dumb”
Me: “It’s how the world works buddy. Everyone does things and says things and sometimes we don’t like that…but you can’t always be right. Not about everything.”
Him: “But I AM RIGHT!!! ALWAYS!!!!”
Me: “No you’re not…Breathe, Baby, Breathe.”

Piggyback Repost

Here’s a repost to piggy-back-ride my post from yesterday. Originally posted in July 2008.

I’m serious people.

Today I got an email through Facebook from an old friend that I grew up with in Hong Kong. He’s someone that I have often thought of but I haven’t seen or spoken to in nearly twenty years. I knew he’d be involved in helping others; something we both learned by watching our parents work as missionaries in Hong Kong.

He turned me on to a project of his; personally and professionally.

After watching the clip he sent, I am again reminded how easy my life is. How do I sit around in my comfy chair, making money and eating fat food while beautiful people live in a place constructed out of the things others threw away?

This isn’t a new thought for me, nor is it foreign for me to help others. But, it is so easy to get sucked in to the materialistic American dream and wish for the stars that will benefit me the most. I showed the clip to Andy and he too was moved. I forgot to mention to him that watching this made me want to sell my huge house and move somewhere cheap so all my money, energy and resources could be put into making the lives of children in this world a little more tolerable.

Not far away from the homes of the children living in this dump are resorts, gourmet restaurants, beaches and relaxation. Do any of these children know that life? How dare we sit around and whine that we don’t have enough?

I want to thank Derek Williams for sharing this with me. I hope he don’t mind that I share it with you.

Check out this clip:

www.operationquad.org

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