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Autism and the Tooth Fairy March 29, 2009

Posted by hopeauthority in Autism, Children, Family, humor, Parenting, special needs.
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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!

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Empathy and Autism March 23, 2009

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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During my recent sickness, Fabio and I shared one of the most beautiful moments.

It was the fourth day of suffering with a headache like none I’ve ever felt. Nothing would relieve the pain. Nothing. Fabio and I were alone in the house, in the den. He on the computer. Me on the nearby couch.

So, I figure he’s engrossed in his game. And in a weak moment, the tears come and I sit there sobbing softly into the arm of the couch. I don’t know how much longer I can take this pain.

Fabio turns around to look at me from his computer chair and sweetly asks: “What’s the problem, Mom?”

I look up, surprised at the inquiry. “Oh, honey, Mommy has a bad headache. My head hurts alot.”

He gets off his chair and walks over to me. He leans in and kisses my forehead gently. Then he steps back and before returning to his computer chair he says/asks: “Happy?”

It was all I could do not to cry even harder…

Happy 7th Birthday Fabio March 22, 2009

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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Well, I can’t think of a better reason not to make this…my 100th post…a post all about me, than to instead salute my little guy on his latest milestone. 

Has it been 7 years already since my water broke right in the middle of Home Depot, only 27 minutes after I’d been released from bedrest, and flooding the entire lighting department?

Anyways…I’ve been absent due to my lingering on what surely felt like the brink of death for a few weeks. Nasty sinus infection that I ignored for two weeks, then a very bad reaction to antibiotic #1 …as in holy shit, I think I have the rare but serious tendon damage that the label warns of as I can not walk on my feet…a cough that will simply not stop, an unrelenting headache that made me want to freakin drive off a cliff. Well, you get the idea…

But I put off the doctor since I wanted to get through Fabio’s party. He opted for the bowling party again and a good time was had by all, most of the kids being friends from school. He got great gifts from folks who “get” that sometimes you have to buy below the recommended age if you want to give something “age-appropriate” to an autistic kid.  After hacking my way through the party, I crashed the rest of the day and I realize that I simply must take better care of myself if I want to be around to take care of everyone else.

After the bad reaction to the first drug, and the headache which… if I didn’t know I had a sinus infection I would have thought was surely a stroke brewing… I even went to Fabio’s DAN doctor (a chiropractor) for help on Thursday.

He took one look at me …there without Fabio..and knew it was serious. So, out comes his arsenal of holistic remedies. First, a lovely massage of the face, head, chest and neck with lavender oil. There I was, on my back, all relaxed. His strong, warm, oily hands massaging my shoulders and neck and then…

In one fast and fierce unexpected moment, he twisted my head like they do in the Rambo and Bruce Lee movies. You know what I mean. You hear the crunching bones as someone’s chin is twisted way beyond their shoulder and their neck breaks..and they slide like a mass of jelly to the floor…dead.

Like a wienie, I screamed. A scream to be heard in the waiting room (if not the parking lot). I could not believe that I was not…at a minimum…rendered a quadriplegic by that maneuver. I also could not believe that my headache was gone. After 4 straight days. Gone. Just like that.

Then I remembered why I love this man. Even if he did send me home to drink a teaspoon of apple cider vinegar and put peroxide in my ears 3x/day. Kinda hokey. And gross.

I’ll eventually get around to doing that traditional 100th post. But I wanted to wish Fabio a year full of fun and growth and peace. And I wanted to remind all of you to take care of yourselves so you’ll be around to enjoy many more of your special kids’ birthdays too.

Autism and Stem Cell Research March 10, 2009

Posted by hopeauthority in Autism, Health, Parenting, politics, special needs.
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With a stroke of his pen, President Obama may have just untied the hands of the researchers who needed federal funding so that they may use embryonic stem cells to cure diabetes, MS, Parkinson’s… or even Autism. 

As is often the case, I again find myself in an interesting position when it comes to the impact of something in the mainstream media spotlight. And some people have asked me my opinion on the debate over not only the use of federal funding for embryonic stem cell research… but the use of embryonic stem cells themselves, regardless of the funding source.

You see, I am Catholic. I have a child with autism who could someday benefit from embryonic stem cell research. And I’ve also found myself with a handful of frozen embryos …with no interest in becoming an octo-mom. 

At the risk of over-simplifying things, I am glad we are getting past the moral/religious roadblock that is getting in the way of scientific/medical research which can cure millions of people. 

Some people may say I am not a good Catholic, or not Catholic at all. I see myself as a more “modern” version of a Catholic. (That’s what I imagine about 80% of the Catholics who are under the age of 75 to be.) I have rejected some mandates of the Church, but am a good and charitable person overall. I send my daughter to Catholic school, attend Mass when I can, and volunteer for many, many causes and events. It’s important to me that my son be able to make his Communion some day, even if I must become a religious ed teacher for special needs kids to make that a reality.

I don’t believe I am going to hell because I had my children through IVF (in-vitro fertilization) or because I may donate my frozen embyos to autism research or because my wearing of white at my church wedding was a questionable color choice. There are surely folks who disagree.

I feel that if God really didn’t want me to have children, he would not have created my brilliant doctor. Maybe I needed to overcome obstacles so I’d be strong enough to parent a special needs child. Maybe I would have taken motherhood for granted…as so many moms of typical kids unwittingly and naturally do… if it came easily.

My point is that maybe there is a greater plan than any of us realize when we first look at how our lives are going. Who is to say? Maybe the daughter I conceived through IVF will grow up to be the researcher who cures diabetes.  Maybe if I donated my frozen embryos to autism research, millions of children will be cured. Maybe my own son. Or yours.

Just as we all hope that the world will be more accepting and open-minded toward our special kids, I hope that people …maybe even the Church… will realize how important it is that we look at the bigger picture and the greater good that will be served from the federal funding of embryonic stem cell research.

Millions of suffering adults and children may someday be cured and saved by using the countless frozen embryos… that would otherwise be discarded … for research purposes.   Is is sad on some level that these embryos are not destined to be transferred into a ready uterus in the hope (not the guarantee) that they’d implant and develop into a viable child? Of course. But that is the reality. They are not going to be. You can’t mandate that the biological parents use them or donate them to another couple. So why discard them?

I do not choose to be an octo-mom. So what is to become of these embryos? Certainly not donation, for what other infertile couple would knowingly choose embryos that may have a genetic predisposition for autism. Am I the only one who sees research as almost a no-brainer option?

And as for the use of federal funds, well, our government is so quick to send money all over the world for all sorts of causes that, again…in my opinion… curing autism or diabetes with embryonic stem cells is at least as important as saving the freakin spotted owl in the yucatan, or whatever.

Although I am defending some of the actions I’ve taken which are contradictory to my faith, I love my faith. With the hand I’ve been dealt, it certainly would be easier to walk away from one’s faith than to stand by it. So, it’s obviously important and a great source of strength to me . I practice as I do rather than not practice at all.

I live my life… and encourage my children to live theirs …by first and foremost being good people who do the right thing. Always. Even when its difficult…especially then.  And do good things for others.

There is an opportunity for those children I will not be having to make a big difference in…maybe even save… the lives of millions.  Maybe save my son. Or yours. I can’t imagine God having a problem with that. 

How do you feel about the federal funding of embryonic stem cell research as a cure for autism and other diseases/disorders?

Adventures with Mr. Gutter Mouth March 6, 2009

Posted by hopeauthority in Autism, Children, humor, Parenting.
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I knew it would happen someday. 

The thing about talking …or swearing…in front of kids is that they soak it all up like a sponge. And don’t kid yourself about those cute little non-verbal autistic kids who seem to be in their own little worlds. Little sponges, I tell you.

Remember this one thing: Just because they aren’t talking, doesn’t mean they aren’t  listening. They understand more than you realize. And your day is coming. Mark my words. It’s coming sooner than you think.

So, the politely vague note comes home from the teacher’s aide (who is, like, 14 years old or something) and it says Fabio “had a ‘slip’ and they ignored it”. So, dope that I am, I am thinking my kid fell down and they left him there. Then it goes on and says something about writing neatly and a ‘slip’ again. WTF? So I politely write back that I don’t understand what they are saying, please clarify.

Apparently, unbeknownst to me, the code word for a curse/swear/bad word is a ‘slip’. Ohhhhhh….I get it now. So the details of the exchange were as follows:

Teacher’s aide: “Fabio, you need to rewrite this assignment. It is not neat enough.”

Fabio (begrudgingly rewriting it, replies): “Son of a bitch…”

Look, I’m a bad mom. I admit it. I laughed at the picture in my mind. Do I want him to go around cursing? Of course not. But I am not going to have a fit over an occasional ‘slip’. Especially when used in perfect context!

What did bug me was the note that came home with the details from this doe-eyed youth of a teacher’s aide. She had whited-out the following addition: “He did NOT learn that at school, for sure.” (Yes, I read the back of the page and could easily see what she meant to conceal!)

I’m not proud to report that I sent in a note today figuratively ripping her a new one over that comment. I told her it was out of line. I told her almost every parent and every kid, typical or not, curses on occasion. I told her that since she is not a parent much less a parent of a kid with autism, she most definately was out of line in judging me.

Then I added that I know he didn’t learn it at school because he learned it from me. I told her she could also hear an occasional “Goddamnit”, so she’d better brace herself for it.

I explained that during the SIX YEARS  I waited and worried for Fabio to find his voice, I promised myself that…if only he would speak… I would never tell him to be quiet. That even a bad word would be a good sound to my ears.

She called me first thing this morning to apologize for the misunderstanding, which I really appreciated. I believe she learned something important today about perspective. Something she can use in the remaining zillion years of her teaching career since she is just starting out. 

That and that you can still read whited-out text from the back of the page. Well… son of a bitch!

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Note to friends and followers: My 100th post is very close. In keeping with tradition, I am considering making it a post answering any questions…tasteful of course…that you may have about me. So if there’s anything you want to know that you don’t already, let me know.

American Idol and Autism March 5, 2009

Posted by hopeauthority in Autism, Children, Family, Parenting.
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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.