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.

The End of Summer

School starts in two weeks. That means I have only one more true week of summer vacation. “Practice Week” begins on Monday the 23rd. Reacquainting Colin with a more rigid routine is not something I’m looking forward to, but it has to be done. When summer started, I told myself that keeping him in his normal morning routine (get dressed, eat breakfast, brush teeth, take meds before tv or games) would be critical. Also, adhering to a regular bedtime would make it easier on him so he wouldn’t be tired during the day…which brings Tigger out in full force. Did any of that happen? Um…no. The only routine activity he’s clung to is reading the Sunday comics. “I only like the Sunday ones because they have color. The ones on Monday, Tuesday, Wednesday, Thursday, Friday and Saturday are not in color and that means I don’t like them. They don’t make sense without the color.”

I think it took all of two days for me to sink into the joy of sleeping in and letting the kids get up without me. Colin won’t walk down the hall to the living room alone if no one is out there…so on mornings that he’s up first…he crawls in bed with me and turns the tv on. Actually, he doesn’t crawl in. He does this wild sort of run-jump-plop-scramble maneuver. Then, because he hasn’t had his meds yet, the stimming begins. That involves rubbing Mommy’s arms, playing with my elbows, touching my legs and putting his face two inches away from mine and asking “When are you getting up?” Not all that relaxing for me, but still.

The dumbest thing I did was not enforce his morning routine of getting dressed before anything else happens. By the end of last school year, Colin was finally at the place where he would get his clothing, socks and shoes on independently. Then, eat breakfast…brush teeth and THEN he could watch tv if time allowed. Guess what…he is still in his pjs as I write and it’s 10:30 a.m. So, Practice Week is gonna be tough. Adding to the stress is a new bus schedule, new bus route and new bus number. When I told Colin about this change…”I’m STUPIFIED!!”…was his only response, followed by flapping and spinning. Ugh.

Clearly I am not winning the Aspie Mother of the Year Award. But guess what? We had a fun summer! We stayed up late, swam in the dark, chased fireflies and ate lunch on the trampoline. We laughed a lot and grew a lot. So, my last official week of summer will be more of the same. I promise.

And only when I’m all happy and tired out from playing will I get back to filling out forms, scheduling therapies, IEP meetings, TSS set-up and enforcing routine. For now, we’re all just having too much fun…and I’m fine with that.

When Red isn’t Really Red

I would like a word with the Crayola Company. Frankly, any maker of crayons, markers or colored pencils. I’d like to invite them to my home to observe the frustration Colin experiences when he’s required to do a coloring activity. Why? Because not one crayon in the box is labelled “Red”, “Blue”, “Green”, “Yellow”, “Brown”…you get the idea.

Colin doesn’t like to color for fun. His preferred style is to scribble with a Black crayon. However, when homework requires him to “Color the square shapes red”, for example, he’s more than willing. It’s required, therefore it’s a rule and he must follow it. (One benefit of his typical AS personality.) Because his fine motor skills are diminished it takes a LONG time to get the coloring to stay within the lines…but he’s meticulous in that task. What would take a neuro-typical child three minutes to complete takes Colin ten. IF he can find the right colored crayon to fit the job.

This is where my gripe with those crayon companies comes in.

Colin’s literal brain can’t use “Posh Pink”, “Rusty Brown”, “Blue Green” or “Amber Yellow” when his instructions call for pink, brown, green or yellow crayons. Even “Light Blue” won’t work if the required color is simply BLUE. We’re working through it … like we’re working through everything, but it’s not easy. He feels like he’s not doing his homework right.

I do love all the beautiful colors in a great big box of crayons…it’s just not Aspie friendly and I’ll be darned if I can find a normal box (other than with the kids meals at Applebee’s) of crayons without the extra hues thrown in.

Yesterday, I took Colin and his best friend (Yeah! he has one!) to the petting zoo and then for ice cream. Colin ordered his typical “Green” ice cream (read mint-choco-chip) and I got strawberry. He looked at my dish and uncharacteristically ventured outside his zone and asked if he could taste my flavor. He liked it! Cool…

HIM: “Mom, next time we come here I will ask the persons with the ice cream for a medium cup of strawberry…and then the time after that…which will be two times from now…which is the third time…I’m going to try the raspberry ice cream in a medium bowl.”

Well, okay I thought.

Later that evening he repeated this agenda to Liam at the kitchen counter while they ate dinner.

Colin: “Liam, I had green ice cream today…next time I go to the petting zoo I am going to have strawberry…I tried it and I think I like it…then the third time I go I will sample raspberry.”

Liam: “Cool buddy. It’s good to try new things. You want to try raspberry huh?”

Colin: “Yes, Raspberry is darker than Red. I don’t know what color Raspberry really is, but if I taste it, maybe I can find out and then I’ll know.”

There ya go, Crayola…just flavor the off-the-wall hues in the box and we’ll be fine!

Who Are All These Children…

and why are they calling me mom?

It’s one of “those” days here. School cancelled and all my plans for getting things done go out the window. I sit in the kitchen listening to the banter in the living room and alternate from laughing at their silliness and yelling at them to STOP!

Liam, in particular, gets very hyper when he’s bored…VERY hyper. He tries to find ways to wind his little brother up as much as possible. It backfired this morning though.

Liam: “Colin…you stink!”
Colin: “No I don’t! You’re a fart head!”
Liam: “What did you say? You little stinky kid!” And then mutters a few things in German that I don’t want to know the meaning of.

Colin (who weighs a whopping 34 lbs) runs across the room and jumps on Liam where he’s sitting. Liam (who is 70 lbs heavier than C) gets him in a leg grip and tickles him which produces giggles and then a big round of punching to get Liam off of him. Liam screams at him and starts wrestling him but Colin is like a little fly on flypaper. Once he has his arms and legs around you…it’s a vice grip. This little game rapidly degenerates into Big Brother screaming and getting too rough and Little Brother crying and getting hurt.

So, Mom Referee has to intervene and pull them apart and of course yell at Liam for starting it in the first place. Kiss the boo boos on the baby and give the eldest my best evil eye warning look.

A few minutes later, they had kissed and made up and were sitting side by side on the couch again.

Colin: “Liam, you are such a Kid!”
Liam: “No I’m not, you’re a Kid…I’m a Teenager.”
Colin: “Liam? Can you lift your right leg up?”
Liam: “Why?”
Colin: “Because I want to get under it so that I can get you in trouble again.”

Priceless.

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

The Things We Do For Love

Three days from now, my husband will hand over the keys to his office and walk away from a job that he worked hard to get.  He’s resigning as Director of Operations for Lancaster EMS in order to take care of his family. He’s doing it because he loves us.

What a wierd week it will be. Several months ago, we realized that someone needs to be physically present in our home nearly 24/7. Not for our children as much as for Andy’s parents. So, at the beginning of 2008, I severely cut back my hours at my business with the idea of being home.  Since that time, we have struggled with what direction to take. My being home has hurt us financially and I find myself working every single minute that my husband is home in the evenings and on weekends. That leaves little breathing room to hang out as a family.

At the end of June we came to the prayerful decision (at least I prayed quite a bit!) that it would be better for Andy to be home. Financially, we’ll do better if I work full time.  Emotionally, we’ll do better if I work full time. Domestically, we’ll do better if I work full time. Frankly…I should just stay away!! No…just kidding…but….

Andy is much more disciplined about the domestic chores. I’d rather play with the kids, surf the web and hang out by the pool than do laundry, clean, cook and grocery shop. I hate it. He likes it. In fact, in anticipation of next week at home, he already went out and bought more cleaning supplies!

Anyway, I would just like to say kudos to the man who would put up with me for nearly fifteen years and be willing to put aside his career to do the right thing by his parents and his children.  I know that for some people, this is a departure from what God intended when he created man as head of household, but for us it’s the right and sane thing to do.

Thanks, Babe!

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