Posted by: divinescribble | February 4, 2010

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.”

Posted by: divinescribble | January 21, 2010

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

Posted by: divinescribble | January 20, 2010

Forgotten Stories

I am taking a break from my usual blog topics to introduce you to a cause that is important to me. Tens of thousands of children around the world live in extreme poverty. Right now, this week, in the wake of Haitian devestation and the images of death and despair that we are shaken by, the fate of children living in extreme poverty is tugging at my heart.

Forgotten Stories is a newly formed company with a passion for those children who feel forgotten by the world and a desire to show them love. Co-founded by an old, dear friend of mine, Derek Williams, Forgotten Stories is currently running a campaign to clothe as many children as possible with your help. (Derek is an old friend only ’cause we’ve known each other since diapers, not “old” since we’re both shy of forty. Sorry, dude, didn’t mean to offend.)

The Forgotten Stories website has a new shop with very cool T-shirts for men and women, men’s Polo shirts and cargo pants. This newly launched clothing line is part of the One for One Campaign. With the purchase of any shirt for yourself, Forgotten Stories will donate an article of clothing to a child in need. AND, with a purchase by January 31st, a $5.00 donation will be made to the American Red Cross for use towards Haitian relief.

I hope many of my bloggy friends will visit their site, listen to the stories, watch the videos and decide for yourselves if you can help. You can follow them on Facebook and Twitter.

I bought my first three T-shirts last night! I’d urge you to do the same.

Posted by: divinescribble | January 13, 2010

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.

Posted by: divinescribble | January 12, 2010

Super Sticky Note Tuesday

So, I’m a little late today with these…

Click the little sticky link on the sidebar to find out how to make your own! Tis fun!

Posted by: divinescribble | January 10, 2010

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.

Posted by: divinescribble | December 22, 2009

Post It Note Tuesday (Holiday Edition)

 

Posted by: divinescribble | December 21, 2009

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.

Posted by: divinescribble | December 21, 2009

Extra Measure of Grace

Wow! Almost a week since I last posted something on this fine blog! I feel a little starved…like an addict looking for a fix. I have been reading blogs, just not writing anything. So, now I’ll probably spew out more than one post to make up for it.

That’s because…it’s been stimulation overload around here. Way too busy around here planning and prepping for Christmas, all the while trying to maintain order and control in a house ruled by disorder. Problem is, one of our children demands a constant, predictable routine and if he doesn’t get that…well…hell….

It started last week with Christmas anticipation. Everyone’s excited. Colin has no idea why he’s excited except that Christmas is coming (which means presents and “secrets”) and all the lights in people’s yards are really fascinating. There is not much structure to the Kindergarten day lately. Coupled with the fact that his teacher was off for two days and he had a substitute, well, that mean that the tailspin began last week on Monday!  If ONE, LITtle thing is out of sync, there is a literal Tailspin. Butt in the air…spinning in circles. Yep.

Here’s the order of things during the week:
1. Wake up at 7:00 a.m.
2. Eat breakfast.
3. Brush teeth.
4. Get dressed (and if you do it all by yourself, you get to mark your chart).
5. NOW you can watch cartoons.
6. 7:55 walk to the bus (but at least five minutes before that, you’ll have to struggle with your coat, hat, gloves, backpack and turning OFF the TV.)

Here’s the order of things on the weekend.
1. Wake up (but don’t get out of bed until someone comes to tell you it’s okay. If you’re awake before ’someone’ then just kick your legs against the wall long enough and loud enough that they’ll hear you and come get you up.)
2. Whatever. Really. Whatever. If it’s Saturday or Sunday, you can do “whatever” until ’someone’ is awake enough to feed you breakfast and then the weekday rules start.

Here’s the thing. We got some snow. About 13″ of snow on Saturday. Hence, we were stuck in the house Saturday and most of Sunday doing ‘nothing’. Well, we made cookies, decorated the tree, listened to Christmas music, played in the snow…whatever the mood dictated. So Colin had a very, very unstructured weekend. RED FLAG number ONE.

This morning…”Two Hour Delay with Modified Kindergarten!” Meaning, he won’t go to school at all. If he did, he’d get there about 15 minutes before I’d have to pick him up for a doctor appointment and he’d miss the rest. Easier to keep him home…maybe.

One hour of kicking, screaming, sobbing, rolling around and generally tantruming (is that a word?) because “It’s Monday! It’s Cycle Day 3! It’s school!!!”  He does this thing with any transition that doesn’t go his way. Then he ’shakes it off’ by literally shaking his whole head around and announcing “I’m done now.”

We went on to the doctor’s appointment and on with our day, but what a morning!

When Colin was diagnosed with Asperger’s Syndrome, Andy and I had about an hour’s time to talk to the Neuropsychologist who worked with him. More than anything he said or recommended, I remember this part.

He said that Colin will always struggle. It’s our job to teach him how to cope. He will always behave differently, it’s our job to help him know what’s okay and what’s not.  It’s our job to discipline his misbehavior, but….BUT…he will always need “an extra measure of grace”.

That hit me hard. No professional psycho anyone had ever suggested that my child was human before now. But this man understood that Colin needed a little leeway…a little grace sometimes. Today was one of those times.

Yep. Yep. Yep.

Posted by: divinescribble | December 15, 2009

Sticky Note Tuesday

Life, laughter and the pursuit of silliness brings STICKY NOTE TUESDAY. I love reading these things and now I’m writing them…

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