How to Fix a Broken Heart

a family’s love
lots of tape
lots of glue
time
laughter
patience
more love
a really good team of surgeons

Tomorrow morning my Father in Law is getting his heart fixed. His broken heart was discovered when a routine X-Ray checking for pneumonia discovered way more than the Doctor was looking for. We are hopeful and optimistic, but frightened.

Did I mention we were HOPEFUL? We are full of the hope, people.

So tomorrow, family will gather and the finest doctors in all the land will come together and mend my father’s broken heart and make it brand new again. He’ll be up and around in no time. This will be a distant memory. There will be much rejoicing and happy times ahead. I just know it.

Because that is how it is supposed to be. That is how it should be. That is how it will be.

Posted by Shash @ 1:00 am | 4 Comments | March 31, 2009

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The Best Gift He Can Give

Spiff has a slight problem. Anyone who has met him figures it out in short order.

He doesn’t like to spend too much time around people.

It doesn’t matter who you are. It doesn’t matter how much he loves you or you love him. It definitely doesn’t matter if his huge head traveled down your birth canal and split you in two. It doesn’t matter if you are drop dead gorgeous. He would even do this to Mario, or even any Pokemon character that crossed his path. A few short words, a quick greeting, and then – poof! Gone. If you blink, you may miss him.

This behavior has baffled many people. He’s so chatty, they don’t understand why he just up and disappears. He has hurt friends, classmates, and even family members. Nothing sends a mixed message like a “Hi, how ya doin!” and before you can answer, the person asking the question is gone. You’re left standing there, in mid-sentence, wondering what you did to make him disappear.

I’m here to tell you that it’s not you, it’s him. It’s also the Asperger’s.

My son has the attention span of a gnat, and if you catch him on a day that he is unmedicated, well, let me just say bouncing off the walls is common.

What is similar to teenage behavior; barricading yourself in your room is also a typical Aspergian behavior. And he does it well.

He’s also hurt his grandparents with this behavior. Deeply.

There have been some developments in our family recently. Some medical issues that require quick medical attention and surgery this week. Needless to say we are concerned and not a little bit frightened. And hopeful. And because Spiff is older now, we felt it best to share with him what is going on and to prepare him for the long road ahead. We expected him to not really “get it”, and not really react.

I also want it on record that people who are on the Autistic Spectrum DO show emotion. They are capable. It DOES happen.

We discussed what was going to take place. We discussed what he could say, what he should say, and what he could not say. We also told him that he needed to engage people in conversation more, and discuss things with people and LISTEN to what they have to say. A Conversational Lesson 101, if you will. A way to help him stick around just a little bit longer when people talk to him, and try a little bit harder to join in with what other people are talking about.

To break out of his self-imposed shell.

He’ll start tomorrow with his Grandfather. It’s the best gift he can give him.

Posted by Shash @ 10:02 pm | 2 Comments | March 28, 2009

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I’ve Heard of Losing Oneself at a Convention, but this was RIDICULOUS!

I don’t know if I have conveyed this enough, but we are a family of geeks.

‘Tis true. We like us some geeky stuff, including conventions where they talk about geek stuff, show us geek stuff, and most importantly sell us geek stuff.

That brings us to MegaCon.

Last year, I had no idea this even existed. My brothers went and didn’t tell us about it until after the fact. (I might have gotten a wee bit angry about it too, who’s to say?) They went on and on about the comic book writers, the displays, the sessions, the meet and greets with celebrities. Then they showed us what they bought at MegaCon.

I immediately marked my calendar for the following year.

So this year we went. And it was HUGE! and LOTS OF PEOPLE! and STUFF! And we were walking amongst the sea of people taking it all in when…

…I looked and the husband and Scamp were GONE! POOF! VANISHED! DISAPPEARED!

So I did the only think I could do. I panicked. Annnnnd Spiff and I (and my brother) walked the sales floor for 2 hours looking for them.

We saw some interesting things along the way:

It’s DOMO!!

We also saw a few superheroes:

And then Spiff found the girls of his dreams:

That is the face of a contented boy, right there…

We met some new friends from Twitter:

me and @monkeyluis. We were still looking for them while this picture was taken.

Then even I got to geek out:

It’s Professor Layton and Luke!!! OMG!!

After searching and walking and searching and walking, I finally gave up and BEGGED the staff to page the Husband because I just couldn’t do it anymore. And they did. And even though we had walked around and around the place for hours on end, searching ALL OVER for them, they were where I expected them to be (except every time WE walked past) :

The LEGO pit. Figures.

So my poor beleaguered brother who had come with us on NO SLEEP, finally went home after reuniting us. He’s a Saint, that man! (and he’s single too!!)

Thank you A, for helping us out. You are awesome!

So, exhausted, we went home. But go here for more photo goodness. We had a blast, and we’ll definitely be back next year!

Next time though, we’ll bring walkie-talkies or something. Or a bullhorn. Or leashes. Or maybe the Hubs will remember his cell phone?

Stay tuned!

Posted by Shash @ 7:11 pm | 3 Comments | March 27, 2009

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Seven

Dear Scamp,

The irony is totally not lost on me that I have waited until over a MONTH after your birthday to post this. However, I think this debt will be totally repaid in full when you grow up and have a family of your own, and the trips to visit us will space out further and further. Isn’t that nice of me to pre-plan?

You are now seven. Seven years you have made each day just that much more enriching, and on a few I may have ended them with vodka from the TOP SHELF. Don’t worry, though, both of us had sweet dreams that night. I’m kidding, of course. You are the light of my life, the light of your father’s life. You laugh and play and engage us with your awesome storytelling; with a few fart jokes mixed in.

Okay, a LOT of fart jokes mixed in. Can you and your brother talk of nothing else but farts? Sheesh! I am SO looking forward to the day when those jokes are a little less funny, but by then you will be a teenager, and not speaking to either your father or I. On second thought….maybe I can put up with a few more fart jokes. For now. Maybe.

I am constantly amazed with your capacity to love, and be loved and you are my snuggler. There is no doubt you are my child, and anyone who needs proof of that need look no further than your unabashed love for tea. Sweetened (by mom) and NO lemon. That part might be a sacrilege, but we have time to discuss that and fix it. And trust me, we will.

I think many times a day how lucky I am to have such wonderful boys at different ends of the spectrum of life. I think you are here to help your brother navigate through all the things that seem to come so easy to you. I think the two of you have a lot to learn from each other, and I enjoy watching you guys try not to kill each other daily. So if you wonder why mom is making popcorn and she hasn’t told you that it is for you, that would be why. The next show should be starting in 3…2…1…

So, my chatterbox, Happy Birthday, a month later. When you grow up and have kids of your own, remind them of those “month-long” celebrations we had growing up, okay?

It makes Gramma and Grampa look better. And cooler. And everything we will not be in a few short years to you.

Don’t believe me? Go ask your brother. He’ll tell you.

Love,

Mom

Posted by Shash @ 10:26 pm | 1 Comment | March 19, 2009

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Shash’s BookShelf Mondays: A Child’s Journey Out Of Autism

I was approached by a very nice person I know and asked to review a book they had, and I happily agreed. As an avid reader, I’m always up for reading anything that people want to send me, or even what my local library or Amazon may have.

(Amazon.com? I love you. Let’s go make out.)

However, when I received the book, I have to say I was not happy. The title alone made me cringe. I read the back cover. Then I read the forward. Then I set it down and walked away. I quickly surmised that I was going to have to try to read this with an open mind and report back what I thought. Then I read the book.

I knew it was not going to be easy.

The title of this book is called A Child’s Journey out of Autism and it is written by Leeann Whiffen. This book is the story of her son, Clay, who after many visits to doctors and specialists was diagnosed to be on the Autistic Spectrum. The book chronicles their journey through treatments and therapies to help him break out of the shell that his parents feel that vaccines given to him at a very young age created.

It is a well written book, and I definitely relate to and sympathize with Leeann and the rest of Clay’s family. Leeann gives you a front row seat to what it is like to be part of a family struggling to understand what is going on and the feelings of hopelessness parents can have when no one understands what to say, what to do or how to help. It can be difficult living with and parenting a child on the Autistic Spectrum; and yet, there is joy and so much to learn from them, it is the equivalent of receiving a rare and priceless gift. But a lot of the time it definitely doesn’t feel that way. Leeann explains that beautifully.

However, that being said, there is some things about this book that I do not like*, the first being the part where Leeann feels that she has “cured” her child of Autism.

Yes, I did use air quotes. Yep, I sure did.

Autism is not a disease like a common cold, or pneumonia. It is a part of you, like your heart or your limbs, and it DOES NOT go away. It is manageable, and treatments can and do help. Those children who are higher functioning have a better chance to lead lives similar to their neurotypical peers, but the reality is that these kids that will become adults will always have a few more humps to get over, or move to a beat of a different drummer. For the rest of their lives.

I know this because I live this. My teenaged son is High-Functioning Autistic. So I definitely have some experience in this arena. You could say I walk the walk and talk the talk. I’m “living the life”, as it were. I’m in the trenches.

Leeann does discuss in great detail the methods used to help her son Clay break out of his shell. Many of those intervention methods include; ABA, Floor Time, Gluten Free/Casein Free Diet, etc. She explains beautifully her pain, her struggles, and what couples go through when they begin that long journey into the Autistic world. Her struggles with her doctors to even see that there was something wrong, and the bureaucratic red tape one has to go through with insurance and schools; as well as her tenacity to put a personalized program together for her son make this a must read.

And yet, as much as I want to, I can not recommend this book to you.

The reason I cannot recommend this book is because she has used the word cure in regards to Autism, and I disagree with her so strongly about this. I can not help it. I feel that saying someone has been cured of Autism is incredibly irresponsible, and I can not and will not be a party to that. I’m sorry.

No matter how much I can relate to her struggles. No matter how much I agree with many of her techniques; no matter how much I want to applaud her for never giving up, I can not, in good faith, recommend this book. Unless you have a very open mind. Unless you are not looking to cure your child of Autism. Unless you are realistic and understand that this is a lifelong issue.

Therapies for children on the Autistic Spectrum are not “one size fits all” and books and titles like this continue to perpetuate that myth. I’m thrilled that Leeann found the right “formula” that has worked well for her son, but there’s a very strong chance that formula will not work for many children who are also on the Spectrum. To essentially say “Do what I did and it will cure your child of Autism” is the equivalent of selling snake oil at a country fair. You do your audience a huge disservice. I’m very interested in having hope; just not false hope.

Had she just taken out the word cure and not made it a Child’s Journey out of Autism; but instead made it a Family’s Journey THROUGH Autism, this review ~~might~~ would be very different.

Autism is a life-long journey. It is most definitely a journey filled with hope. It is a journey filled with strategies and interventions but as of yet there is no cure. There needs to be acceptance and there needs to be stories told about the struggles, the highs, the lows, and everything in-between. We ALL need to know that others are out there sharing in the same struggle. We ALL need to see how others have done and what people have tried. We need to keep those lines of communication open for discussion and further learning. We ALL need to have hope. However, we don’t need to be told that there is a cure when many of us who live with an Autistic child or adult know better.

I hope that book is written someday. I just may have to be the one to write it.

* The second thing has to do with Autism and Vaccines, another area that I feel is not “One Size Fits All” in the Autism community. However, Leeann feels that her son was affected by vaccines given to her son, and I will agree that we do need to green our vaccines. However, that is all I will agree to. The rest is up for discussion at another time.

Posted by Shash @ 4:01 am | 9 Comments | March 9, 2009

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How Yanni gave me sweet dreams at BlissDom

So, Y’all…

There I was at BlissDom09, first thing in the morning. Sat down at a table, got my coffee on, bootin’ up my computer. Then the lights dimmed. And screens around the room started playing this:

Isn’t it amazing?

The show airs tonight on your local PBS station; check your local listings. Not sure what your channel is? Here‘s a handy guide!

I had the pleasure of meeting Nathan Pacheco and Ender Thomas at BlissDom09. They were as wonderful to meet in person as their voices on the show.