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Autism: Birthday Party or No Birthday Party? March 10, 2010

Posted by hopeauthority in Autism, Children, Family, Parenting, special needs.
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Well, it’s that time of the year again. Time to plan Fabio’s birthday party. He wants an indoor pool party (we still have snow here).

And I won’t even get into how bothered I am by the fact that he’s turning EIGHT. Where did all that time go? And yet, sometimes it feels like he should be 20 because he’s been 2 for about 10 years…

As I was making out the short guest list, I realized that only one of the kids who had autism had had a party of his own and even that kid just had one or two. And its not a financial thing. The moms, all of whom I know well and for at least 3 years, offer these reasons:

1. He doesn’t “get”  the birthday party concept, so why spend the time and money?

2. He doesn’t “get” the presents thing.

3. He doesn’t interact with his peers, so why bother if he won’t even notice anyone’s there.

4. I can’t predict how he’ll behave on that day and if he’s “off”, then it’ll all be a waste.

5. I’m tired of family or friends complaining that he doesn’t come up to them. They don’t get it and I have no patience.

6. He won’t know what he’s missing.

On one hand, I can relate to a lot of what they feel. And yet, even with hesitation, I booked the party today. For this Saturday. (Not too last minute, right?)

Maybe I’m just wishful, but I think Fabio does understand that kids should have a birthday celebration. And I think I’d be sad if the only cake was the one at the dinner table with just the four of us. Is it just that I can’t let the dream of typical die? Maybe. And I’d beat myself up with Italian guilt if I did actually hurt his feelings by not having a party with his peers. But that’s me and it’s what I hope is right for my son.

I’d love to know what others think about having traditional birthday parties for their autistic kids. Do you or don’t you? Do you do it only for your typical kids? And what about the guests: a mix of typical and special needs children or not? What kind of party do you have (ie pool, bowling, etc.)?

Share your thoughts here.

Autism and the Nursery Witch October 19, 2009

Posted by hopeauthority in Autism, Children, Family, Health, special needs.
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No sooner did I wrap my mind around the first article with the big jump in autism stats…1 in 100 instead of 1 in 150…but right on it’s heels comes the latest figures. 1 in 91.

1 in 91.

Anyone else feeling sick?

It brings a recurrent and ridiculous vision to my mind.  I am standing outside the glass of an insanely large maternity ward, looking in at rows and rows of newborns… with their cute smooshed faces and their arms tightly tucked into their cocoon-like wraps. Soft little beanies of pink and blue atop misshapen little heads. There’s about 100 of them all lined up. Or should I say 91 of them.

And like some sick, twisted fairy tale, there’s a witch hovering over one of those beanies…a blue one… casting a frightening spell that will manifest itself in about 18-22 months, upon the happening of a certain event.

I want to shoo the witch away, but I am too late. I want to hear what she is chanting, but the glass is too thick. I need to know what will trigger the spell to come to pass.  Some environmental toxin? Some vaccine? Some seemingly safe food that wreaks havoc on the digestive and immune systems…not too far off from the poison apple?

There are still days that I can’t believe that my blue beanie was the one.

I remember shortly after Fabio was diagnosed 5 1/2 years ago…before I told anyone but the closest  family and friends… I was at a carnival and spotted a woman with a boy about 5 years old. She wore a tee shirt with all the stats about autism on its back dating  from the time it was 1 in 10,000 until the present. At that time, the most recent stats were 1 in 250.  It cryptically stated: “Your child could be next”.  I could not take my eyes off her, her child, or her shirt.

Back then, I was haunted by that shirt and so worried about my son’s future. I still worry about his future…every day as a matter of fact. But the idea that the numbers of children being diagnosed with ASD are rising too quickly to even make up such a tee shirt…now that’s a scary thing. 

At this rate, it’ll be 1 in 75 by Christmas.

Someone really needs to kill that nursery witch. Fast. The survival of all our beanies depends on it.

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…

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.

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…

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

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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 Tooth Fairy March 29, 2009

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There’s the autism world. There’s the real world.

There’s the bridge between the two worlds…that I imagine as one of those rickety, rotted, wooden suspension bridges with missing planks like you see in the Tarzan movies. Every day, desperate parents risk it all to cross over with their special kids. To bring them back from wherever it is they’ve escaped to. Back to the real world.

As if this isn’t hard enough to make sense of…

There’s also the fantasy world. Enter the tooth fairy.

Holy enamel, Batman! How do you freakin explain this concept to an autistic little boy? Do you even try?

Well, having a typical 11 year old who still sorta believes in all things magical..sorta…and who happened to lose one of her last few teeth on the exact same freakin day as Fabio lost his tooth, I had to face the fairy.

It has been about 2 years since Fabio lost his first two teeth in quick succession, so he doesn’t remember anything about the fairy coming. This particular tooth has been hanging on for ages, so I knew the moment was coming. When Fabio flashed me his winning smile yesterday morning, there was no denying that the tooth…suddenly laying down flat forward in a pool of blood …had to be “helped” out of his mouth. Gross, I know.

After priming him all day, Fabio insisted on falling asleep in his regular spot…our bed…and on making a “tooth samwich” by putting the tooth between two pillows. He and his tooth were moved to his bed. His sister fell asleep with her tooth under her pillow. The tooth fairy left her standard $5.00 bill amid a dusting of glitter under her pillow. (You know…fairy wing dust!) For Fabio, it was a bit different…

I heard him stirring this morning and quickly went into his room in the hope he’d settle back to sleep. I found him sitting up with a dollar bill in one hand and a Kooky pen in the other. Did I mention that Kooky pens are his absolute favorite thing in the world and he’d do anything for one? I thought I got him to lay back down for a bit, but, like a lightbulb had gone off in his head, he jumped out of bed, rounded the corner and, before I could stop him, made it to his sister’s bedside.

He snapped the light on, flung back her covers and turned over her pillow to reveal her haul. I know he thought he would steal her Kooky pen, but alas, she only had a five-spot. Yes he pocketed that anyway. And then he hit the lights and climbed into her bed for the first time ever and snuggled in for another hour of sleep.

So, he got it. Somehow, he made the leap from reality to fantasy. I don’t know who or what he imagined the tooth fairy to look like, or how he thinks she exchanged the tooth for the goods, but he didn’t freak over the concept of his tooth being gone or of the thought that someone or something came into his room in the night.

I think the key to making this a positive experience was the kooky pen. It was in making the reward something relevant and desirable for him. Just money would mean nothing to him…despite pocketing his sister’s haul.

Let’s hope the Easter Bunny goes as smoothly…

Share your own tooth fairy experiences here!

American Idol and Autism March 5, 2009

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Dun-na. Dun-na. Dun-na. Dun-na. “THIS (long pause) is American Idol…”

All it takes is a few notes of the intro song to send Fabio running, hair in the wind, for the big screen in the den. He starts asking for American Idol about an hour before it’s due to start. It is a great blackmail tool reinforcer to use to get him to do any outstanding homework or finish eating (yes, we eat kinda late)!

Idol has been a tradition in our house since Season 4. We never miss it, even if we have to DVR it on occasion. And we all participate in a “pool”, so we each have to decide who to vote off each week. I always take my daughter to the concert when they tour in the summer.

One of those funny moments you’ll always remember happened a couple seasons ago when the four of us were watching Idol. It had just ended and hubby, daughter, and I immediately started speculating and debating about who we thought should be voted off, with us not able to agree. Fabio was just sitting there with us, being his regular cute, essentially non-verbal, four-year-old self. It was down to maybe the last 4 people at that point. 

Once we stopped debating and there was a lull in the discussion, Fabio simply, and clearly, stated: “Lakisha”. Freakin Lakisha. We all burst out laughing. Great times…

So now, when the Idol music begins, Fabio has started doing something that is both adorable and excrutiating at the same time…he runs to his drum set and starts to “play”. And Mr. Music also occasionally “accompanies” some of the more rock-style performances with his unique drumming talent. Or he’ll try to sing along a bit. Or he’ll dance.

So watch for Fabio to be in American Idol, Season 18. He’s got 10 years to perfect his gig. Oh, and he’ll be no wild card.

Nope, America will vote him in, for sure.