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:

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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.

Growing Pains

Eight months? Seriously? Wow! I know I’ve said this before, but I really can’t believe I’ve taken so many months away from this little lovely blog. For so long writing was my therapy…and the only reason I stopped, honestly, was that so much of what I wanted to write would come out in jumbles and total ADD jargon. I’ll always admit to the fact that my mouth works faster than my brain and I say stuff unfiltered most of the time. But, in my writing I am free to edit and I haven’t wanted to edit much of what I thought lately I guess.

It’s been an interesting time of change for sure! Change often hurts, but we grow through pain and I’ve committed myself to a path of personal improvement in spite of hurt and irregardless of happiness. Emotions are wonderful things…but they can’t make decisions for you.

Maybe it’s because the warmer weather is slowly (way too slowly) working it’s way in…I’m a total summertime chicka…but a few days ago I felt my writing fairy tug on my sleeve a little. I was sitting at a ball park watching tiki tiki play a great game of baseball…and realized that the little fairy was buzzing very loudly in my ear. I love watching baseball…I don’t get tired of it. I also love watching Liam on the field…on the bench…anywhere near the field. He’s part of something really fun and really cool and he loves it. The excitement that he gets preparing for a game and the total meltdown that happens if he feels he didn’t do well afterwards are all so raw and real. We could all learn from him I think. As adults we’ve somehow learned to put on the “right” face instead of allowing ourselves the pleasure of just honestly feeling and letting go of both the good and bad so we can move on.

Colin is learning how to show his feelings too. Unlike Liam, who wears his heart on his sleeve, Colin has to be taught how to express those things. He has to be taught the words for the way he’s feeling. He can’t identify emotions the way others do…but he’s learning. This week (thanks to weeks of Social Skills therapy) he has been doling out hugs and ” I Love Yous” quite a bit. However….he announces them first. “Mommy…I’m going to come hug you and tell you I love you.” Then he sorta pats me on the back. Whatever! I’ll take it!!! Melts me. Sometimes it’s nice to know I’m more important at that moment than the plane, train or car he’s currently obsessing with.

This week, I finalized within myself the ability to not care too much what other people think of me. Not that I’m going to go do whatever I want no matter who gets hurt. Not at all. Just not going to worry about what I might imagine someone else’s opinion of me are. I had the privilege of hearing Darren Hardy speak last month. I took a lot of what he said away with me and slowly incorporate it into my daily activities. Most importantly he taught me not to be afriad of what other people will think. If they aren’t going to cry at my funeral…then they aren’t anyone to be afraid of.

In the meantime…I can’t wait for a fabulously fun summer! I’ll continue to foster my mild crush on Rob Thomas and keep dancing like a nut in my kitchen at night!

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.

The Blog Fairy Returns

I can’t believe it’s been over six weeks since I blogged. What a dry spell that was! I have no excuse, no reason other than pure busyness and distractions that can’t be ignored. Thank you to all of you who have asked where I am or how I’m doing. I’m fine…

I’ve decided to create a new page called “Colin Speaks” here on this fine blog. Living with an Aspie whose manner of speaking and use of language is very pedantic and precise. He enunciates every syllable (would make any language professor proud).

My plan is to regularly update Colin Speaks. I’m not sure why I feel the need to catalog the things he says and does…perhaps to keep those things in my own memory. But, my hope is that it will give those of you without an AS child in your lives a glimpse of what it’s like for both the child and the family to interact with one another. And, for those of you WITH a spectrum child…maybe you’ll find yourself and your experiences here…

Some will be funny, some poignant…some probably very boring!

Happy Tuesday!

Chasin’ the Blues Away

Beautiful, beautiful, beautiful day! The last remnants of snow are melting away and the sun is shining. Once again, I awoke to birds singing outside my window…a sure sign of Spring. My iris and daylilies are poking their noses through the dirt and I spy buds on the lilac. My impatience at the cold and snow is turning into impatience at having to wait a few more weeks before I can begin to dig in the dirt.

I’ve been in a little funk lately. Nothing major, just minor exhaustion and frustration aimed at the hurdles and hoops I’m jumping through to get proper support for the C man. I cannot understand why I must apply for Medical Assistance (the application for which is daunting on its on) before being able to find full-time classroom support from an ouside agency. They will also be providing the wrap services of home help and hooking us up with the right therapists.

My mind’s eye is seeing the three more evaluations by psychologists, speech therapist, occupational therapists, psychiatrist…and the mountains of paperwork involved.

OT, PT, IEP, SLP, MA, TSS, MD, PsychD…it’s like Alphabet Soup! Oh, and let’s throw in a 504 just to confuse things.

Any whoo…last night I sat in the living room with all these reports, applications and letters, feeling rather overwhelmed and a bit blue.

So, I pulled up my You Tube account and found my favorite video to watch. Nothing like a dose of The Blues to drive the blues away…and with that I will leave you with my favorite blues pianist and her improvisational skills…

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