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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.

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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.

Missing Mom April 15, 2009

Posted by hopeauthority in Children, Family, Parenting.
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“There’s only two things that are certain in this life: death and taxes.”

That was one of my mom’s favorite sayings… probably since she was born on income tax day and she worked for over 25 years as the secretary/office manager in a funeral home, comforting people in their time of need.

She’s been gone for 15 years and today is her birthday.  I was her only child. She died during the “infertility years”, well before my kids were born.

She was an amazing woman. She was always dressed up in silk Liz Claiborne dresses, with high heels and the real expensive stockings you get in a department store …instead of plastic egg. She had beautiful skin and never went out without makeup. She had her hair done at the salon…called “the hairdresser” back then… each Saturday. She never owned a pair of pants or socks or sneakers. And I can actually feel her presence whenever I’m near an Estee Lauder counter or the fragrance “Beautiful”.

Yet, for all her fashion sense and style, she was also down to earth and real in many ways. She never lost her small town Pennsylvania roots. She loved kids, even though she only wanted to have one of her own. You might catch her sitting on the floor of her office in her fancy clothes playing with her boss’ young son. When my cousin was sick (we’re talking about 30 years ago here), she actually convinced a local pizza place to not only deliver her a pizza, but to drive over to Friendly’s first and pick up ice cream too! She did tons of charity work, would make people laugh til they peed in their pants, threw awesome parties, and was just a unique and special woman.

And there was nothing…nothing…that she wouldn’t do for me.

Since she died before I became a mother myself, I realize that as much as I loved and appreciated her…and she knew that… I really didn’t fully appreciate the true depth of her love for me until my own kids were born, and it was too late to tell her.

I can’t imagine what my life would be like right now if she was still alive. But I know it’d be much happier and fuller and easier, that’s for sure. And I like to think of her as guiding my family somehow from beyond.

Funeral talk was always part of the family vocabulary.  Being in the business, she had chosen a lovely old cemetery on the hill for herself. So I chose a spot under the tallest pine tree on the tallest hill…since she despised the sun. The graves next to hers are from the Revolutionary War era, with weathered and worn red stone markers. Sitting there really makes me think about how people have gathered on that very same patch of grass for over 200 years. And how they’ll be doing so for hundreds more.

I wanted her headstone to give future generations of visitors a glimpse of the wonderful woman who rests there. So, I waited for inspiration before having her headstone inscribed as follows:

A Heart of Gold Describes Your Soul.

A Page from Vogue, Your Face.

Part Small-Town Pennsylvania Girl,

Part Sequins, Silk, and Grace.

Devoted Friend to Many.

Beloved Mother Beyond Compare.

Heaven Must Surely be Beautiful,

If Only Because You Are There.

 Happy Birthday in Heaven, Ma.  Love you and miss you every day.

Autism and the Dog Experiment…Part I April 14, 2009

Posted by hopeauthority in Autism, Children, humor, Parenting, special needs.
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Like I don’t already have enough on my plate with all my daughter’s activities and, well, with my little challenge, Fabio and his needs…

…now, there’s a dog in our house.

I’m one of those people who can’t say “no”. I’m also one who speaks first and thinks through later. That’s pretty much how Rodney… the prissy prince of a shit zui… came to live with us on Sunday night for the next 10 days while his owners are in Spain on vacation.

But truth be told, I would happily do anything for our very good friends, George and Rose. They are one of only 3 families that “get it” when it comes to Fabio, his diet, and autism in general. We spent Easter with them and came home with Rodney…and the most beautiful cast iron pot:  gigantic, fancy, French-named, green-painted, two-handled, very heavy, obviously expensive (and totally unnecessary!) “Thank you in advance” gift. I joked at the time that Rodney would actually fit inside if he were bad. I’m not laughing now.

Quick background: Hubby and I raised 5 guide dog puppies before the kids were born. I was the drill sergeant. The dogs were smothered with affection during those “infertility years”, but the competitive nature in me needed them to be the best. To have them succeed. Even when I desperately wanted them to fail so they could stay with us. And succeed they did. So I have Labrador experience. Which apparently counts for nothing when it comes to this pampered little lap dog.

But if I am being honest, I had selfish reasons to undertake this challenge. Yes, I was helping friends. But I could “test drive” the idea of getting a dog. See if Fabio would be good with it. Will he be gentle enough? Will he even be interested? Can I take the dog out to pee without Fabio burning the house down while I step out? Or is it still too soon?

I also can have my daughter earn her “Pet Care” badge for Girl Scouts by taking care of Rodney. She’s been begging me for a dog for years. I blame the economy, but she realizes it’s mostly due to her brother’s autism and my fear of something happening to him when I am outside tending to a dog. I don’t want her to resent him over this.  We’ll see how much she wants one after 10 days of taking care of him.

So, Rodney shits in the kitchen 10 minutes into this experiment. Next day, he does it again just to spite me for daring to leave him alone for an hour or so while I took the kids to the doctor. I know it was spite. He’d gone before we left. Rose’s 10 page instruction manual says he’s a one-dump-a-day dog.  He did that extra load…and walked his long hairy legs and paws through it… on purpose.

Game on, little hairball.

Drop Those Peeps You Pesky Wabbit! April 12, 2009

Posted by hopeauthority in Autism, autism diet, Children, Parenting, special needs.
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Ahh. Autism and Easter.

It’s hard enough to deal with the regular holiday stresses, and the challenge of the stiff clothes. When there’s a special needs kid in the house on a restrictive diet… like Fabio and his Specific Carbohydrate Diet… life is just that much more challenging on a day like Easter.

Sure I’ve done my share of almost heroic attempts at making a homemade candy or confection that is legal on this diet. Sometimes, they are even edible. Sort of.  But, I’ve burnt gallons of honey along the way too. I’ve made lollipops and marshmallows from scratch. I’ve made animal crackers, painstakingly cut into mini-animal shapes.  But Fabio never eats any of these things. Maybe it’s a texture thing. Maybe they just suck.

In any event, we have become a candy-free Easter house. And we like it. We have our own traditions that work for us and keep things stress-free. Well, you know what I mean…

“The Rabbit” …as my mom always referred to the Easter Bunny… always brought me stuff in an interesting, reusable container of sorts…but NEVER a basket. Things like a kiddie plastic wheelbarrow or, when I was older, those funky round holders for your stacks of 45 vinyl records…Oh my God, I am ancient!  (It’s true, the first time I saw a microwave was in college… and it took up that rich kid’s whole closet.)  Anyway, the tradition of “no baskets” continues in our home.

Daughter’s computer game and theater tickets and small trinkets are beautifully held by a funky painter’s style cap she can wear later. Fabio’s got a CARS pail full of garden tools, CARS die cast cars he’s been asking for, kooky pens, and a computer game he’ll love. No one will miss the basket… or the candy. 

The egg hunt for plastic eggs filled with coins, stickers, tattoos, and trinkets of the non-candy variety is yet another great tradition that we’ve gently tweaked to be sweet-free, but still fun.

I do confess that while shopping today, I bought a Lindt chocolate bunny specifically because 10 cents of my purchase (never mind that that one bunny came to freakin $8.00…) was being donated to autism research. It’s a win-win-win, right? Lindt gets $7.90. Autism gets 10 cents. I get another two pounds heavier. Can you say sarcasm? I don’t mean to sound like an ingrate, or to look a gift horse in the mouth, but can’t Lindt do a little better than one dime out of $8.00? Fine. I’ll be quiet now. In fact, you won’t get a “peep” out of me…literally!

So I am wishing you all a Happy Easter. One free of sugar rushes and allergic reactions to colors and dyes and other candy ingredients…or at least free of the stresses that often come with holidays. And for anyone who is so inclined, feel free to share your Easter traditions or tips for special needs family fun.

CSE on April Fool’s Day…Are You Kidding Me?! April 2, 2009

Posted by hopeauthority in Autism, Children, Parenting, special needs.
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When your annual meeting with the school district ..the one you lose sleep over for days…is scheduled on April Fool’s Day, it can’t be a good sign, right?

For the first time ever, we went into this meeting unsure of how it’d turn out. All of our past meetings were mere formalities of sign here, initial there…where we knew going in exactly what the district wanted and what we wanted and we were in agreement. Today was different.

I am generally  happy with the school district and they have been generous in the past with services for Fabio. We have a nice relationship and I try to pay it forward by volunteering as a parent member for other kids’ CSE meetings when I can. Still in these economic times, districts are looking to cut costs. So I was worried.

I was in a tough spot. Fabio is doing great as a first grader in his 8:1:2 class, which includes first and second graders (and one third grader).  The district wants to open up an extra class of 8, for the more advanced kids…but it’d be in a different elementary school…and they want him there academically so he’d stay with the kids he’s been doing group work with all year.

My gut…which is generally spot on when it comes to knowing the best thing for Fabio…says to keep him in whatever remains of the original class that he’s in now, just as a second grader.

If I do that, I may hurt him academically since there may not be high enough functioning kids left there (or moving up from the kindergarten version) to work as a small group. But if I move him to a whole new building with all new people who have never had a class like this in their school, Fabio will shut down. I know it. He can not transition like that. He is so aware and attached to all of the adults in the school he’s spent 2 years in. And the teachers and kids in this school have embraced our children in a way that should be televised all over the world as an example of autism awareness and acceptance.

Fabio is sucessfully mainstreaming slowly in this warm and nuturing environment and I’d like that all to continue just as it has been. Ideally, they should just add that third section to the same school so the kids won’t have to worry about transitioning and could stay there until 5th grade just like typical kids get to stay in one school. Is it me, or is that a no-brainer when it comes to our kids and their absolutely ridiculous need for routine?!

At this point, we are in agreement on the 8:1:2 being the proper placement. I’ve made my wishes known as to which class I want him to be in, but the assigning kids to sections has yet to be decided. It’s still possible that there will only be one section in the school I love and that they won’t need the other section until maybe next year. So we are in a bit of limbo. 

Did I mention I freakin hate April?

Anyone have an opinion on which of your child’s competing needs you’d give priority to in this situation: academic vs. emotional? I am open to suggestions.

It’s Autism Awareness Month…Yip-pee! April 1, 2009

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
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Well, its April again.

Already.

I don’t like April.

There’s April showers. April Fools Day (for people who actually have time for pranks and laughter). Allergies. Taxes. A big freakin school vacation to disrupt routines and invite regression and highlight social isolation. Oh, and there’s Autism Awareness Month, of course.

So the whole world will suddenly step up its efforts to be “aware” of autism … for thirty whole days. There will be lots of news articles and Jenny McCarthy sightings, talk shows, and some fundraisers… for thirty whole days.

Good-bye rollover minutes!  I will get copies of every article, plus tons of phone calls reminding me to watch every autism story from everyone who has ever so much as heard of my son having autism… from my Great Aunt Lizzie’s gardener’s nephew to my cousin John the hairdresser’s clients… for thirty days.

I swear, long before the May flowers sprout, I’ll have had my fill of the many “helpful” souls who just show up in April and pass along some autism “news” simply to make themselves feel better. I especially love the ones who tell me about how a special diet may help… Fabio’s only been religiously following one of the most restrictive diets ever made for the past four freakin years. Anyone who has spent more than three hours with my family would know that.  

In fact, there’s only one thing that feels longer than those thirty days in April …it’s the remaining 11 months of the year when the “awareness” fades away and nobody calls… or visits… or helps… or cares.

We don’t need Autism Awareness Month. Or Autism Awareness Day.

We need Autism Awareness Daily. Right Now.