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.

Sometimes My Brain Hurts

I’m tired. Not the sleepy kind of tired…or the exhausted kind of tired. My brain is tired. It hurts. So much going on right now…so much emotional crap being thrown at me from every conceivable place…well not “crap” but y’know.

Someone asked me yesterday if I was really glad that summer was here so that I could have my kids home with me. After I actually laughed out loud I replied, “Yes and no. I’m not a great stay-at-home mom.” Deep down the honest explanation would have been way too hard for her to understand and I didn’t feel like trying. Not everyone cares to know.

Colin has been off his meds for about three weeks. Due to, in part, the fact that he’s scheduled to see his Pedi for a med check and I always take him off a week ahead of time so that we can discuss the differences on/off the stimulants. Butttt….I had to cancel the appointment and am playing phone tag with the office to get a new appointment time. Meanwhile…Colin begins the “Big Spin”. The Spin that doesn’t end.

He exhausts me. Without meds, C is on a constant quest for stim. Tactile stim is his gig. While most mothers would die for the endless hugs and incessant kisses they just make me sad because I know why he’s doling them out. Him and Albert…the fearless stuffed dog who tells me more about Colin than Colin does. Albert goes absolutely freaking everywhere with us!!

“Albert wants a kiss”
“Albert is lonely, will you sleep with him?
“Albert will miss me, so can he ride in your car today while I’m away?”

Albert was at the petting zoo with us today for exactly nine minutes before I’d had enough of Albert needing to feed the ducks one pellet at a time. We decided Albert was tired and should nap in the car for awhile. Then I figured out that Albert is part of his tactile stim need. Once Albert was gone, C decided that putting the little duck food pellets in between his bare toes so that he had 8 pellets stuck in his own little webs was the new “good feeling”. I saw someone walk by and grin while he did that…like it was cute. Maybe to them…to me all I thought was “Please God. Not again.”

The most exhausting thing is the non-stop one-sided conversation. A diatribe on Mario or Sponge Bob I can handle about once a day. Right now…it’s constant. I’ve taken to telling him that he’s got three minutes to talk or he gets to tell me three facts about whatever the current obsession is. (It’s a new rule…should work right?) And then my heart breaks because I realize that we’ve talked all day long with each other and not once has he initiated a conversation that had anything to do with anyone else’s interests or feelings. He’s just researching the facts, Ma’am.

I try to find the fun and crazy things about this Asperger’s Beast most of the time. There are many of them…we giggle a lot and love this little man to death.

But tonight I’m tired. My brain hurts. I need a little bit of a vent…thank you very much.

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.

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!

Birds, Bees…and Weak Knees

I have noticed Colin initiating more spontaneous conversation lately that FINALLY has nothing to do with Mario Brothers. A few weeks ago, it seemed like a little switch went on and we’ve been having quite long and complicated conversations that revolve around him wanting to know something about life.

Tonight’s conversation, however, made me weak in the knees.

Sitting by the pool, warming up after an after-dinner-swim. Erin’s still swimming and he’s watching her. He’s wearing his swim shorts, swim shirt and ever-present life vest. Wrapped in a colorful striped towel with his little purple lips….

Him: “Mommy…I think I’d like to be a girl.”
Me: “Why?”
Him: “Because girls are pretty.”
Me: “But boys are handsome.”
Him: “I’m quite tired of being handsome. I was hoping that I’d be a girl.”
Me: “You’re definitely a boy buddy.”
Him: Big sigh.

One minute passes silently.

Him: “I think you’re going to have another baby and it will be a girl.”
Me: “OH NO! We are definately NOT having any more babies.”
Him: “Well, you should have had two babies the last time…me and a girl.”

Another minute passes. By now, Erin’s out of the pool and we’re wrapping up and heading in.

Him: “By the way, was Erin a baby?”
Me: “Yes, everyone starts life as a baby. Liam was a baby too.”
Him: Smacks forehead, throws head back…”What the heck?! You had THREE babies! All at the same time?!”
Me: “No, at different times.”
Him: “Was I the first one?”
Me: “No, Liam was first…that’s why he’s oldest. You were last, that’s why you’re youngest.”

He thinks for a minute (by now he’s stripped totally naked, cause he like to be that way) and as we walk towards the pool fence door he asked THE QUESTION.

Him: “Mommy, how does the doctor get the baby to come out of the Mommy?”
Me: gulp…weak knees. “Um…well…you know how girls are the only ones that can have babies, right? And you know that girls have vaginas…remember, it’s near the place that their pee comes from. Well, babies also come from the vagina.”
Him: “What?! But it’s so small there.”
Me: “It gets bigger…trust me!”

Erin: “OH MY GOD MOM!!!”
Me: “I have to tell him the truth Erin.”

Him: “But I’ve only ever seen hair there. Isn’t that where your Penis (yes, emphasis added) is supposed to be?”

Somehow that ended it…and now I sit wondering when he’s going to ask me HOW the baby gets in there…right now he’s concerned with how it gets out.

Lord Have Mercy.

Flight of Ideas

Well….typical ADHD day for me….brain flits from this to that and then finds a shiny thing to watch for a few seconds.

I was diagnosed with Adult ADHD about four months ago…which caused my mother to say…”Well, THAT explains everything!”.

Wow.

Here’s today’s flighty recap:

“Mom, mom…..Mommy!!!!! Mom, mom…..mom…do you hear me? MOM!!!!!”

Son #1 managed to get through another day of 7th grade without a girlfriend (thank god!) and kick ass in a baseball game.

Daughter #2 managed to get through another day of 5th grade with Maximum attitude…resulting in a few disciplanary actions…..

Son # 2…see Colin Speaks

Hubby? Well, I don’t want to know that he’s in 90 degree weather (and I don’t care how much time he spent inside)….

Daughter #1 I imagine is doing okay since she hasn’t asked for anything lately or wandered into more trouble than she can handle.

Life as a relatively single Mom with crazy schedules and Asperger’s needs gets tough sometimes.
But…it’s good…it’s ALL good…or at least it wil be when it all pays off.

And tomorrow, I cap off or begin (however you want to look at it) my 40 lb weight loss with the beginning of a crazy, insane home workout….

I’ll let you know if I’m alive on Sunday, K?

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