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Autism Statistics Now 1:100! October 5, 2009

Posted by hopeauthority in Autism, Children, Family, Health, Parenting, special education, special needs.
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There’s many stereotypes and generalizations about autistic kids. Like they don’t handle change well…they like routine…they hate transitions. Well, maybe the apple doesn’t fall far from the tree in this house.

I was on a roll with this blog when my aunt passed away in May. For three and a half months, I found it hard to carve out the time for blogging. It’s not about just posting comments, but also about reading those of others. It’s about sharing and connecting.

My aunt died. My routine was broken. I was unhappy about both. Then a new routine of not blogging set in without me really realizing it. And then that became a hard routine to break.

And so much has happened that was newsworthy in the public eye… as well as in our private life… that caused me to at least think “I gotta get back to my blog!” Yet I didn’t.

I let horror stories go. I didn’t pay proper respects at the loss of Ethel Kennedy Shriver, or of local autism heroes. I’ve been lax in reporting Fabio’s HBOT progress or any of his milestones and challenges. There’s a 100 posts in my head that never made it to the screen.

But today, in Newsday, my local newspaper, an article by Carla K. Johnson, entitled, New study  reveals worrisome autism numbers, jogged me out of my fog and sent me running to the computer:

Two new government studies indicate about 1 in 100 children have autism disorders–higher than a previous U.S. estimate of 1 in 150.

Suddenly, I am moved to write again. But I am speechless. 

Perhaps a moment of silence would be best…

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Autism and School Picture Day May 19, 2009

Posted by hopeauthority in Autism, Children, Parenting, school, special needs.
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Is there anyone…anyone…out there in Autismland who has gotten a good school picture of their kid? Ok, I’ll settle for a decent one. Anyone?

Hmmm. Let me make this easier…

Anyone got one with both shoes still on?

Actually seated… without a tantrum in progress?

How about actually looking at the camera? Okay, that wasn’t fair to even ask.  Anyone have one looking even remotely in the direction of the camera? I’m talking anything at an angle less than a profile.

Anyone with a hairdo that doesn’t scream “BEDHEAD”?

Anyone whose boy isn’t clutching a Barbie in each fist?

Anyone whose kid didn’t spill something on the shirt?

Anyone whose kid kept the shirt on despite the annoying tag in the neck?

As you may have guessed, today is school picture day…again. We are lucky enough to have one in the fall and another in the spring. That’s two wasted checks for $35.00 each in a vain attempt to get a normal looking photo like the rest of the world. And to shut up the mother-in-law.

Where in God’s name do these so-called photographers come from? The freakin’ Department of Motor Vehicles! You know the type…they say “On three. One. Two.” Snap. WTF!!!

Speaking of which, there should be a license required to take our kids’ pictures. 

Until then, here’s a list of helpful hints to get you through the annual ritual:

  • Order the least expensive package since you will probably either send it back or only keep copies for yourself. In the unlikely event you get a winner and do want to distribute it to the entire world, you’ll be happy to pay a bit more for the reprints.
  • Don’t count on him wearing the new shirt. Hope. Attempt it. But don’t count on it. You don’t want to start the day on a stressful note by fighting over the outfit.  Pick a comfortable favorite that you …and he…can live with.
  • Write a note to the photographer in bold print where he can’t miss it (and also tell the teacher to tell him)  that your child has autism and to please have patience and make the extra effort to get him to look at the camera…and ask him to take several shots so that one may actually be decent. I tell him I have tons of relatives and am just waiting for a good shot so I can order more pictures.
  • Send a back-up shirt to school incase the first choice gets ruined before the photos.
  • If you have an old school photo, show it to him before  he leaves and tell him its picture day at school today and you want him to sit nice and smile…and then offer him a positive reinforcer for when he gets home.
  • Send a brush to school and ask the teacher to use it if his hair gets messy. But if your kid hates having his hair brushed, reconsider this tip and just hope for the best.
  • Ask the teacher in advance to schedule the photos for the best time of day for the majority of the class…usually earlier in the day.

So, there you have them. My golden nuggets of school picture day advice for the autistic. Oh, and there’s one more thing:

  • Don’t sweat it if they come back embarrasingly lame…as they usually do. Just send your mother-in-law (and everyone else) an enlargement of one of the many great shots that you’ve taken of your kid.

You know the ones I’m talking about…the ones that only a mother can take.

The ones that capture the true essence and spirit of your child. As if you had a license or something…

Stroke: Autism’s “Cousin” May 18, 2009

Posted by hopeauthority in Autism, Children, Family, grandparenting, Health.
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It’s been awhile. My aunt’s stroke has taken me away from the blog partly because of the physical things I need to do for her and partly due to the mental distraction of her situation.

She survived with mental faculties largely intact. Short- and long- term memory are great. Speech is pretty good. No facial drooping. But the right side of her body is essentially paralyzed. Can’t move the arm or leg. She came out of the ICU, off the ventilator. Now stable.

And cursing. A blue streak. (This from a proper woman who never, ever cursed in her life!) She was being starved by a$$holes for God’s sake! And mistreated by these bast@rds! Why, she was going to call her lawyer to start a suit against the whole lot of them morons!

Well, that was the status when I spoke to her last Thursday. So, I had to make the trip to Pennsylvania on Friday to straighten things out.

So, I arrive in under 4 hours, loaded down with dozens of fresh New York bagels and containers of cream cheese for each of the departments who have helped my aunt. Nothing shows your appreciation better than NY bagels!

Needless to say, the so-called bast@rds couldn’t be more accommodating to me…or my aunt. The Director of Nutrition Services came up to go over her dietary wishes in painstaking detail assuring me that nothing undesirable would ever cross her plate again… and that she’d eat plenty.  Her doctor came right in to update me.

Even the priest from her parish had gotten my message and showed up to bless her, which brought her much needed peace.

Then just as I was about to end my 7 hour visit and begin the long drive home, they discharged her from the hospital and moved her to its 9th floor Acute rehab center. Argh! So, I started all over with the new staff…who is wonderful. And a few more hours later, I left her in their competent hands to begin her 3 hours per day, intensive therapy regimen.

As I visited with her, I couldn’t help but think about the parallels between autism and stroke. And it brought me sadness and frustration.

Like my son, she sometimes needed to “search” for the words she wanted to say. You could see from her face that they were in there somewhere and she was frustrated to have to make an effort to retrieve what was always so readily available. She will need speech therapy, like Fabio.

Fabio could certainly benefit from some occupational therapy (OT) for his pitiful little handwriting, but he doesn’t qualify for OT services since his other fine motor skills are stong and bring up his overall score on the eval exam. But how can I complain about his scrawl as I watch my aunt trying to massage the life back into her right hand with her left one? She will need OT to relearn every skill she ever had like writing, washing, dressing, feeding.

Fortunately, Fabio is a wiz when it comes to all things physical. I am ever grateful for this gift as I am aware that many autistic children need quite a bit of physical therapy (PT). For my aunt, intensive PT is the most important therapy of all. She must try to regain the use of her right side if she ever wants to live independently again. She needs to be able to move. Herself. By herself. Safely.

It’s independence or institution.

So, I sat there for hours…at times blankly smiling at my aunt while my mind secretly contemplated all these cosmic similarities between her situation and Fabio’s…and I felt sadness and frustration. And I felt tired from the battle he’s been fighting and from the one she must now take on.

But I spoke to her only of hope… though there is little for a complete recovery.  A complete “recovery”.

And then I thought of my boy. And the similarities.

And I am sad. And frustrated. And tired.

Update June 16,2009:

My aunt passed away on May 23, 2009, which is why I haven’t been posting for some time. Thanks for your support and prayers.

Prayers and Good Thoughts Requested May 9, 2009

Posted by hopeauthority in Autism, Family, grandparenting, Health, religion.
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On April 25th, I wrote a post about my Aunt Angie’s visit. Please read it now, if you haven’t already.

I was a little exasperated by the way she played with Fabio constantly, but in a way that was too “in his face” and therefore frustrating to him at times. She kept trying to connect with him.  I was frustrated at how hard it is to teach someone how to play with an autistic child…and at the fact that playing even has to be taught.

What Fabio really responded to was the way my Aunt Angie just loved him. It was when she would back off that he’d seek her out for hugs or kisses. And I’ll never forget the memory of Fabio climbing into her bed in the morning and her responding by simply … instinctively… covering him up with the blanket and drawing him into her side for a snuggle.

Ten days after she went back home to Pennsylvania, she suffered a massive stroke.

For those who are so inclined, please pray for my aunt’s recovery.

The world can not afford to lose someone like her. Fabio can’t either.

The Dog Experiment: The Conclusion May 5, 2009

Posted by hopeauthority in Autism, Children, humor.
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Sorry, I left you all hanging after the mid-April report on the rocky beginning of the dog experiment (See April 14 post for recap.)  After much reflection on the 10 day fiasco trial, I’ve decided we are not ready for a permanent pooch in the house…yet.

First, my guide dog training days lead me to expect a perfectly behaved dog and Fabio still needs enough of my attention that I don’t have the time to train a puppy the way I’d want it to be.

Also, I’d be too worried about what trouble Fabio would be getting into while I was outside with the dog doing its “business”. And then there’s the issue of keeping Fabio away from the dog’s food and slobbery toys.

And then there’s the potential for allergies…Fabio has so many food and seasonal allergies and sensitivities already that a permanent dog may be a problem.

And I really had to watch Fabio and Rodney closely when they did play to be sure Fabio was gentle and played correctly.

And I was getting confused trying to keep track of when everybody last peed and pooped!

So, those are the generic reasons we aren’t getting a dog right now.

But back to the experiment, already in progress and going awry at last glance:

I consulted my dog behavior experts for help after the dog kept pooping every time I left him alone. Oh, and he also jumped up on the furniture…or your lap if you were sitting on it. And, uh, humping jumping on Fabio. 

Other quirks: He curled up and slept like a kitten on the front passenger seat of the car, but shook uncontrollably when placed on the floor of the front passenger seat. Wouldn’t stay in his freakin bed at night either …because he wants up on the bed. And, if you dared to leave him alone on a floor of the house for two seconds, he’d bark. Oh, and he licks feet and flip-flops. Ewww.

Did I mention he won’t  poop in the rain?  Well, not outside anyway. Not even when I’d hover over him with a golf umbrella. Did I really do that?! And did I mention that it rained almost every freakin one of the 10 days we had Sir Rodney?!

Of course I’d never tell Rose all these things about her little boy dog.  She’d either never believe me…or be crushed. And I love my friend, Rose.

So in addition to sending her text messages and photos … in Italy… of Rodney having fun, I planned a memorable homecoming.

Did you all hear the story about the lion cub that was raised by two men and then returned to the wild where it became the leader of a pride of lions? Then, after quite some time of not seeing the men who raised him, the men stepped into the lion’s “space” again. The lion, spotting the men, charges toward them. As the camera rolls, no one knows whether it’s going to pounce on them. Then, in a dramatic moment… and to the tune of Whitney Houston’s “I Will Always Love You”… this playful, loving reunion takes place! Major tear-jerker.

I never saw this video, nor had I heard the story, until Rose shared it very casually over Easter dinner. A mental note was made. Ten days of hell followed and Rose was on her way to come get Rodney. Gee, did it look bad that all his stuff was packed up at the front door? 

So the stage was set. The You Tube song cued up for the chorus. The dog held back from view. Rose enters my apparently deserted house and calls out to me…conspicuously out of sight. After a few seconds that felt like an eternity, the silence was broken as Whitney broke into song: “And I-I-I- will always love You-oo-oo … I will Always love You …”

Then I simultaneously released my hold on Rodney and watched the magical reunion unfold.

Rose was hysterical crying … and hysterical laughing … as she hugged her little hairball. I also captured this moment on film so I can make fun of her for years to come.

And so I can watch it the next time I ever.even. think. about getting a dog.

Regression by Strawberry May 2, 2009

Posted by hopeauthority in Autism, autism diet, Children, Health, school, specific carbohydrate diet.
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Gotta love those care-free days of youth and all the fun school projects you do in special ed first grade. You’ve got the non-edible projects with macaroni and glue. And, occasionally, you get the edible ones.

And when your kid is on a totally restrictive special diet from hell , these projects are the ones that make you want to kill somebody. Or kill yourself. Oh, and it’s extra special when you get only one night’s notice about the project…

So the note comes home:

We’re going to be making peanut butter and jelly sandwiches in class tomorrow. Can you send something in so that Fabio can participate?

Unlike the hundred of thousands of kids who’d die from it, it’s not the peanut butter that’s a problem for Fabio.  I have a special organic peanut butter with no additives that he loves.

And it’s not the bread. I make Fabio bread from cashew butter, eggs, baking powder and a pinch of sea salt. 

It’s the freakin jam/jelly that is the challenge.

I’ve been canning jams and jellies for competition for almost 20 years, so thankfully, I have a leg up on most folks in that area. And I can substitute honey for sugar in the recipes. The trouble is the fruit options.

Fabio can eat many fruits, but not the ones that make popular jams. He can’t tolerate berries, grapes, or apples due to their high natural salicylates and/or phenols. And what’s worse is…he loves them. If you put out a bowl of blueberries and a cake, he’d go for the berries every time.

When he eats these fruits, he is in heaven. Until the next day. And the five to ten days thereafter. Yes, you heard me. The effects far outlast how long the food was in his body.

It’s like a Jeckyl and Hyde thing.

He regresses across the board. Total loss of eye contact and any functional language. Very bad behaviors. Repeated tantrums. And it goes on for days! Of course, it’s never worth the moment of pure joy he had while eating the coveted fruit. And yet again…

Still, every 6-12 months a situation will arise when the temptation is too great. When heroic efforts would be needed to avoid the fruit. When just enough time has elapsed since the last time to let me forget how hard those several days of hell are going to be on all of us.

When you think that maybe… just maybe… this time it will be different because maybe… just maybe… he somehow outgrew this allergy.

So I stay up til 2 am making this gorgeous, ruby-red strawberry jam for my little man. And I bake him a fresh loaf of his bread and slice it a bit thicker so he’ll be able to spread on it without ripping. And I packed a little container of his peanut butter. And I crossed my fingers.

Sleepyhead walks in to the kitchen at 7am, sees the jam in his lunchbox, removes the container, and says very nonchalantly: “No thank you.”

Umm… No freakin way!!! I thought. And… with the look of daggers coming from my tired eyes as I replaced the container in the lunchbox… I said through gritted  smiling teeth:

“Mommy made you yummy jelly to make peanut butter and jelly sandwiches today at school.”

“No thanks.”  As he removes it again.

Okay, this is going nowhere. So, I give him a tiny taste. And in one instant a memory awakened inside him. And his green eyes widened. And he smiled. Big.

So he happily went off to school with the promise of more jam in his future. And I met him up there later to give him some enzymes to help him digest the berries. And he came home begging for more PB&J sandwiches…which I gave him… until the small allotted amount of jam was gone. And he was in heaven.

Until the next day when regression set in.

But I’m happy to say that it is less severe than it’s been in the past. He has more language now and has retained it. Eye contact is okay for the most part. The bad behaviors are only evident when demands are placed on him that he doesn’t want to do and even then, not as bad as before.

It gives me hope that my boy will someday be able to enjoy the simple pleasures in life.

Like fresh strawberries in the summer.

And maybe a friend to share them with.

Autism and the Assumption of Inconvenience April 26, 2009

Posted by hopeauthority in Autism, Parenting, religion.
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I call it the “Assumption of Inconvenience”.

You’ve all likely experienced it already. Often. But if not, you will. Oh, you will.

It comes into play when there’s an event, holiday, or a function of some importance… being hosted by friends or family with whom you may actually have a good relationship… that you so righteously expect to be invited to.

But… the invite never comes.

WTF?, you ask.

This just happened to hubby and me …again… this week.

In this latest situation, I innocently asked my good friend Rose on Wednesday when she came to pick up her freakin dog that I dog-sat for (more on that later) when her daughter…our Goddaughter…was making her Confirmation.

She replied: “Monday”.

As in tomorrow.

Ummm, were you ever even going to tell me?

These are really close friends. They “get” the autism thing better than anyone we know. We love them and their kids and the feeling is mutual. So why the apparent snub?

The Assumption of Inconvenience, of course.

Oh, let’s not bother Aunt T and Uncle A to have to make all the arrangements to be able to attend the Confirmation on a Monday night. They have enough on their plate already. Yada yada…

So, we will be missing yet another big event due to this misguided attempt to “help” us by excluding us.  Doesn’t it make so much more sense that if you’re so sympathetic to our plight, why not include us with an invitation and just be understanding if we do decline?

I really hate the the Assumption of Inconvenience.

Almost as much as the Snub of Intent or the Stranger’s Glare of Ignorance.

Autism and Overnight Guests April 25, 2009

Posted by hopeauthority in Autism, Children, Family, grandparenting, humor, Parenting.
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Somebody save me. And Fabio.

I got the bright idea…born after too many consecutive sleep-deprived nights… to invite my 75 year-old aunt to come to visit and see my daughter’s stage debut.

Did I mention she never had kids? Or that she divorced about 30 years ago and still lives in the same house with her ex because they are both too ornry and stubborn to settle the distribution of their property. They sneer at each other as they pass in the hallway as each waits for the other to die first. Or that she never stops telling the same stories from her childhood …complete with the venomous grudge tone… about how my mom was the favorite and got everything, while she was, like, the slave version of Cinderella and had to cook, clean, and care for the youngest sister. Woe is her. Forever.

But, she was always good to me. And she loves my kids. So, I get these crazy, regrettable ideas from time to time. And I spent 8 hours on the road to get her back here on Friday.

And I’ve been kicking myself since because…

She won’t freakin get out of Fabio’s face. She’s like everything you’d want in a grandma…if you had a typical kid. But when you have an autistic kid, she’s like, oh, um, the anti-Christ of grandmas. I am waiting for Fabio to deck her.

Within minutes of arriving, she started forcing herself on him, trying to play with him. Not exactly his strongest trait. He plays with his toys. You watch. If you’re very lucky, you will be able to ease your way into playing with him, but must take his direction. He’ll let you know which toy you can have…and which one you can’t. He will give you a turn…after every 3 of his. Again, if you’re lucky and subtly work your way into his space.

So, he’s kinda like the Toy version of the Soup Nazi from Seinfeld. Yes, it’s Fabio, the Toy Nazi. If you don’t follow his rules… rules that seem ridiculous to typical people… “NO TOYS FOR YOU!”

And don’t even get me started on her attempt to move the assembly of 425 little toys (which we refer to as Fabio’s “concert” or “show”) off the dining room table. That show’s been in town for 2 months. He really doesn’t have much interest in it…unless someone touches it!

There’s really something wrong with this world when a little boy with autism can’t enjoy his grandma-type great aunt because she just can’t understand how to connect with him (despite parental guidance).  I feel guilty being frustrated with her…because at least she tries. There’s so many younger family and friends who don’t. 

Before Fabio went to bed last night, my aunt told him she was staying overnight and he should come see her in the morning. So he leapt out of bed at the crack of dawn and ran down to her room and crawled into bed with her. Steps behind him, I got a peek of her throwing the blanket over him and welcoming him in for a silent snuggle.  And I backed quietly away…

Some situations need guidance. Some, happily, don’t.

I guess she can stay awhile longer…

The Mainstreaming Experiment April 21, 2009

Posted by hopeauthority in Autism, Children, special education, special needs.
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Today, Fabio had his first taste of a typical classroom. Just a taste.

And I am thrilled to report that it was freakin de.li.cious!

My little guy has worked so hard this year. A few months ago, he got to mainstream into a typical first grade class for gym. He happens to be very athletic and coordinated, so we reasoned that gym would be a good place to start mainstreaming. And because that’s gone so well, I suggested at his April 1st IEP that we consider experimenting with a more traditional and structured subject.

His teacher agreed and Fabio is now going to spend some time each day in Reading in a typical first grade class of about 25 kids. Starting today.

I wanted to call the school, like 15 times, to see how it went. I was imagining the worst.  Would he even go into the classroom? Would he melt down from the terror and be unable to transition? Would the teacher be supportive? Would the kids be nice? I could barely wait til the little bus brought him home to find out how it went.

Me (excitedly): So, did you go to Mrs. L’s class today?

Fabio: Yes.

Me: Well, how was it?

Fabio: Good.

Me: Tell me what you did. Did you read with the other kids?

Fabio: I want Noggin, please.

Argh. So close…yet so far. This is going nowhere. I know…I’ll check the communication notebook for a note from the teacher (who was forewarned that failure to send a note home with details would result in a frantic phone call instead).

There I found it. The note. It said:

Fabio had a great day. He went to Mrs. L’s class for reading. NO BEHAVIORS!  He raised his hand and participated in class. He was very interested in the new environment and was looking around the room. Fabio continues to do well in mainstream gym and he’s making friends.

I stood there and took it all in for a moment. Unable to speak. Joy and hope daring to well up inside me.

No behaviors? Raised his hand? Participated in class? Is making friends?

The words assembling a vision in my mind of my little boy… who works so hard… bravely facing this major transition. Boldly crossing over from his autistic class to a typical one…just for awhile. Overcoming all the social, behavioral, and sensory obstacles of his surroundings that no doubt were bombarding him the entire time. Mentally slaying those dragons.

The journey is long and hard. But it’s days like this that replenish the spirit.

I am so proud of my little boy. So, so proud.

Autism and the Home Security System April 20, 2009

Posted by hopeauthority in Autism, Family, special needs.
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If ever anyone needed a home security system…a state of the art one…it’s a family with an autistic child.

Not so much to keep the burglars out as to keep the child in!

Some call them “runners” or “escape artists”. IEPs call them “elopers”. But they all have one thing in common… the kid makes a break for it whenever he can. It happens at home, in school and in public.

If you’re lucky, your school will assign your eloper a matron for the bus (so he doesn’t walk out the back door while the bus is going 40 MPH!) and an aide for the classroom so you can rest a bit easier during the school day. (Unless of course, the aide is a 60 year old asthmatic with arthritis who couldn’t get herself out of the building in a fire, much less chase down your energetic rebel as he flings open the school’s front door and makes an unauthorized break for the playground).

The fear of elopement rivals the fear of an embarrassing tantrum in public. It causes many of us not to take our autistic kids out shopping or anywhere else where their darting away could be disasterous. And if we do take them out, it’s the reason we apply the vulcan death grip to their shoulders or hands when walking … which in turn causes them to try to wriggle away from our grasp and, well, make a break for it!

So, how do we keep them safe at home? That’s a loaded question. First, we have to keep them in the home. And that brings me to the reason I have time to write this post. I am spending the day home with the home security system alarm tech who is updating our system. 

Our house has 2 levels with the bedrooms upstairs. We also have a basement with a playroom and laundry room. We are one of those couples that never set the alarm, but mostly had it for the security the PANIC button gave me. Three weeks into our 5 year contract, the alarm thingy on one of the windows came loose and caused the system not to set. That was how it stayed for 5 years. Yes I know, that’s lame. Stupid, even. And that was just before Fabio’s diagnosis. 

But what was (to me) the most valuable part of the alarm system remained functional…the chime feature. I could not live without the chime feature. Between that and the baby monitor that I STILL use on occasion to give me an extra sets of ears as to what Fabio is up to, I can still call this place “Home Sweet Home” without it always having to be completely in lock down mode like Attica.

The chimes beep whenever someone opens one of our many doors or windows. When its subtle “chirp…chirp…chirp” goes off, it stops the entire family in their tracks and prompts a chorus of “Where’s Fabio?” that continues until we can be certain it wasn’t him going out the door unsupervised…or climbing out a window. 

Several of my friends with autistic kids agree about the need for a feature like the chimes. One friend actually can’t go to sleep until her six-year old son is deeply sleeping and she has taken heroic measures to secure his room… ever since she found her then two-year old Houdini on the awning outside his second story bedroom window! This same little boy also escaped a locked and guarded hotel room and made it to the hotel bar at a family wedding when he was four. Never underestimate these kids and their obsessions.

It should be interesting to see how Fabio handles the new alarm system, which hubby and I have vowed to really use this time. It’s got the windows and doors alarmed, motion detectors all over, heat sensors and other James Bondy stuff.  I envision many false alarms as he imitates us and randomly starts pressing buttons on the alarm’s keypad. I’m sure the resulting repeated presence of police cruisers at our home will feed the neighborhood gossip mill in the coming weeks.

Oh, and consider installing your keypads about 7 inches higher than customary to discourage or delay your little rebel with an OCD-like cause from reaching them.

I wouldn’t be surprised if I’m driven to actually prying off one of those window alarm thingys. As long as I have my chimes…

So, how do you keep your little ones safe at home, or in public? Share your tips for safety…or your stories of escape… here.