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.

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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.

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!

I Understand You Perfectly!!!

Somewhere in my past I got the idea that I must be perfect. As a mother, I should know instinctively what my children are thinking and feeling. Or rather, that they should be just like me so that I would always know what’s going on in their little worlds. Thank God that’s not true…I’d hate to see little clones of myself…however, I’d like a little more intuition when it comes to the Asperger’s nature of my child. Please?

I shoulda known that he’d have a little meltdown yesterday. I just didn’t realize that he’d smack me over the head with insight again. I hate it when that happens. Makes me feel like a teeny tiny Mommy. He wanted to play a Wii game…fine. Wii on? Check. TV on? Check. Wii game inserted? Check. Anything working? NOPE. Just a frozen image, 47″ wide, staring back at us from the screen.

Him: “Mom, it’s frozen again.”

Me: “Great…just great.” (Frustration sets in cause I know now that a tantrum is coming if this isn’t going to work. Not in the planned agenda…tears soon to follow. And I am not in the best of moods myself.)

Him: “I’ll just wait a little and see if it starts.”

Me: “It’s stuck. It’s not going to work.”

Stupid me reaches over and ejects the disc from the Wii. Pushes the power button. Won’t turn off, won’t do anything. Crap!

Him: “AAARRRGGGHHHH!!!!” (I actually winced before he did it, i knew it was coming.) “WHY did you take it out? Why? Why? You broke it!!! Put it back.”

Me: “No, it’s not working. This stupid disc froze the whole machine and we’ll have to wait until Dad gets home to fix it.”

Him: Sob, gasp, Sob, wail “NO! I can fix it! Just put it back in the Wii and I’ll fix it. I know how to do it!!”

Me: “No you don’t buddy. Last time this happened we had to wait for Dad.” (Trying to stuff down the frustrated voice is not working.)

Him: Sob gasp Sob Wail! Tears are flowing, he’s spinning in circles. “No, I can! I can! I can!”

Me: “No, you can’t. Just stop crying and find something else to do! Do you understand what I’m saying? It’s broken right now and you can’t fix it!!!”(Clearly frustrated now, no guessing there.)

Silence except for a few sniffles and occasional sob. Like a switch went off in his brain.
He calmly looks at me (well, at my chin since he can’t stand the eye contact for long).

Deep breath. Shakes the head real fast to shake off the tantrum.

Him: “I understand you perfectly! I just don’t know how to get you to understand me!”

Wow. Bam, right there on the forehead. Smack!

I’m trying little man, really I am. I understand you perfectly now.

Better Living Through Chemistry?

Colin began taking a stimulant medication two weeks ago. On the advice of his psychiatrist and pediatrician, we agreed to try giving him a low dose of amphetamine each morning in an attempt to control the impulsivity that comes along with Asperger’s. We started it over Christmas break so that any adverse effects would happen here at home and not at school.

So far, so good…I think.

Feedback from his teacher and aide last week seemed positive. Colin’s biggest “issue” at school is his constant need to touch people. Rub them, flick them, make faces at them, hug them. An intense need for tactile stimulation means he’ll go get it wherever he can and he loves the feeling of another human being. This week, he was able to stay in his space better and needed less re-direction. Less stimming by touching people, although his little squeeze ball was in constant use. No behavior issues with other kids that required a “talk with Mrs. G.” after school. All good stuff, in my opinion!

Feedback at home is mixed in nature. Mixed up in my thoughts anyway.

Yes, he’s less impulsive. He’s not jumping over furniture or smacking into his brother. Less time spent arguing when asked to do something and more time sitting quietly. Only one tantrum per day instead of four or five. He’s sleeping well, staying dry at night suddenly and focusing on the task at hand a bit more.

But here’s my conflict: I miss some of those impulsive moves. Particularly one. The one where he touches me all the time. Prior to taking meds, he’d exhaust me with hugs and kisses. Frequently, he’d stop what he was doing just to come rub my arm or cling to my leg. Certain clothing I wear illicits more of this touching and I’d get so tired of it! How many moms have to say “Only one more hug before supper allowed.” How wierd is that?

Now, I’m lucky if I get two or three spontaneous hugs per day. Is that better? I’m not so sure.

So, this weekend I decided not to medicate him. I got tons of hugs, loving kisses, back rubs, arm rubs and leg pulls. I also got lots of wierd noises, couch jumping and spinning in circles. That’s okay…I’ll take it if it means I get my dose of touch for the week.

High Friends in High Places

Woo Hoo! I’m IN!!

One hour in the pediatrician’s office proved to me that my YEARS of working as a pediatric nurse for this particular practice may have paid off in more ways than one.

Background: For fifteen years I worked in a large and growing Pediatric practice. This group specialized in well child care as well as sick child care. We had a little ER and were open each night until all the kids were taken care of. Night after night we’d work until 11:00 or later if we had to, making sure all the sickness and illness….stitches, breathing problems and poop issues were resolved.  This group of physicians also specializes in ADD/ADHD and other behavioral issues (above and beyond the norm for MDs).

My life as a nurse there was wonderful. Nights spent torturing kids with immunizations and breathing treatments. Inserting catheters, IVs, stitches, throat cultures and ear currettes. Giving out stickers, hugs, kisses and cookies. I spent weekends with a beeper on my belt answering calls from parents worried about their sick babies or out of control teenagers. I saw my own patients for Asthma/allergy teaching. Now…I’m being paid back.

One year, I left that office and went to work for a local non-profit outpatient facility called Philhaven. I worked for a wonderful physician treating kids in intensive group therapies if they weren’t able to mainstream into school. I dispensed meds and advice to children with ODD, ADD, ADHD, PDD-NOS, Autism, Asperger’s, aggression and anger. Then I went back to the relative calm of the crazy pediatric clinic/office/home.

Today I took my son to the pediatrician at the above mentioned “office.” I haven’t been on staff there for nearly four years. The doc. I saw was one I worked with many nights. We like each other and respect each other’s clinical skills. This was the man who diagnosed Colin with SID nearly 6 months ago. Since then, his recommendation to a neuropsych resulted in an Asperger’s diagnosis.

For an hour I sat talking with him. Colin was there and happily played with his Hotwheels cars making tracks and trails over doc’s pants, shoes, folders and computer. Doc complied, occupied and laughed with him. (love this man.)  He concurs with the AS diagnosis.

A few weeks ago, he asked me to call a specialist, who also happens to be the psychiatrist I worked with at Philhaven. Apprently this man has recently opened a Center for Autism and Behavioral Disabilities about five minutes from home. I called them (managed to drop that I’d worked for head physician in the past but that didn’t work) and was put on a waiting list. Next POSSIBLE appointment? August, 2010.

I want to go there. Colin NEEDS to go there. I need to go there to find out how best to parent this guy, but August??????  Really?!

So today, pedi doc says…”No meds unless the psych at Philhaven says so.  I don’t think we’ve got ADHD, but maybe, maybe some anti-anxiety meds will help with school.”

I say: “But I’ve got to wait until August, cause Psychiatrist (name omitted) has this waiting list. I was hoping that because he knew me and I worked with him, that someone would be impressed and I’d have an ‘in.’ ”

Him: “You have an IN with me, girl. This boy needs help now and so do you. I’ll call Mike today and you’ll have an appointment so fast!”

Yeah!!!

High friends in High Places.

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