Rage of Grapes

grapeHere’s another post I alluded to months ago, one I suggested I might do someday.

Gracie’s waving her hands in the air, like she just don’t care… Using colloquial English here, folks.  Work with me.  Anyway, I know the signs.  My father, Gabby, and I are sitting at the dinner table, and Gracie is winding up to throw something.  Usually it’s her sippy cup.

“Gabby, please get your sister’s cup,” I calmly say.  Gabby goes to reach for Gracie’s cup, an suddenly, Gracie stops waving her arms, reaches down to snatch her cup up with blinding speed, and hurls the cup at my face.  Not lob, not toss, not throw, I mean hurl.  I manage to turn my head in time to have the sippy cup bounce off the back of my head.

Ouch!  Oh boy, am I pissed.  I complain to Gabby through clenched teeth that she wasn’t fast enough, while rubbing the back of my head.  The one little crack in my otherwise calm facade.  Kristine chides me for showing my anger.  “Well, excuse me, for not liking hard, plastic things being bounced off my head,” I retort.  I need to get a grip, before the rest of my facade crumbles.  Kristine tells me that I’m ‘whiney’.

While massaging the bump on my head, I think about my reaction and begin to laugh.  I can be such a dolt sometimes.

And now to the reason for today’s post title… Grapes of Rage.

I used to sit at the head of our dining table to eat my dinner.  Most evenings during the week I eat alone at the table, being that I get home from work well after my family has eaten their meals.  Gracie would occasionally deviate from her pacing path, head in my direction, and try to take food from my plate.  I would always see her in my peripheral vision, and manage to block her from taking my food.  I wasn’t worried about any approach from my backside, because of the half wall and countertop behind me.

One evening I’m eating my dinner, and Gracie decides to launch a sneak attack, approaching me from my 4 o’clock.  Just outside of my peripheral vision.  Pretty crafty, I must say.  Suddenly, an arm appears in front of my face, and I look down to see Gracie’s hand in my food.  I overreact, and try to grab Gracie’s hand to get some of my food back.  In the process, some of my dinner goes flying all over our dining area, and worse, we knock over a tall glass of grape juice.  Hadn’t had a sip of it yet.

I saw purple everywhere.  I was seeing purple.  For a moment, I was raging inside.  With no one I could rightly take out my anger on, I look for the nearest object onto which to inflict harm.  I stand up, grab a poor, defenseless dining chair, and raise it up into the air.  I’m going to smash it into a thousand pieces…

My other daughter, Gabby, is witnessing this.  I check myself at the last moment, and only slam the chair down hard into the floor.  I’m done eating.  Without a word, I get out the broom, dust pan, and paper towels to clean the mess up.

I’m no saint, obviously.  Although some would have me believe parents like us are, to be given a child like Gracie.  For the most part, I do have it together.  But every once in a great while, an ugly side of me bubbles up to the surface.

I now eat my dinner adjacent to where I used to sit.  Being that our dining table is in sort of in an alcove, I can see Gracie from any of her possible approaches.  She still tries, but it ain’t working for her no more.

And last, but not least, a word on Gracie’s fundraiser at http://www.gofundme.com/z9smdz4c.  We reached our goal of $5,000.  We are truly grateful for all who shared news of the fundraiser with their friends and family, as well as for those who contributed to the fundraiser.  Thank you all so much!  Will post updates on Gracie’s well-being and progress at 90 days, 180 days, and after one year.

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One month after stem cell therapy

Just a quick post… Gracie’s fundraiser has now collected $4,245. Please share link below. Our goal is $5,000, and we’ll be giving 10% or $500 to a lucky donor.

Anyway, it’s been a month since Gracie received her stem cell therapy. No remarkable changes yet, but she has started off her new school year very well. Hopefully starting off the school year well is a positive sign!

http://www.gofundme.com/z9smdz4c

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MMR vaccine and autism

Holy cow… just when you think the debate over the MMR vaccine and autism link is over. Evidence of a CDC conspiracy to cover up data that shows a connection between the MMR and autism?

Centers of Disease Prevention and Control (CDC) scientists deliberately destroyed all physical data and records of an internal study that showed wildly higher autism rates among African-American boys under the age of one who received the Measles Mumps Rubella (MMR) vaccine, according to a letter written by William Thompson, Ph. D., one of the scientists who participated in the records destruction, and read Tuesday on the floor of the House of Representatives by Rep. Bill Posey (R-Fl).

Thompson’s letter is just one of thousands of similar documents that have been in the possession of Congress for more than a year awaiting action by the Oversight and Government Reform Committee.

The records were destroyed specifically to prevent the information from becoming public according to Thompson. Thompson stated that he retained copies of the destroyed records which are now in the possession of Congress. Thompson and his colleagues later published a study that dismissed any connection between the MMR and higher autism rates in African-American boys.

http://www.c-span.org/video/?327309-1/us-house-morning-hour&live=

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GoFundMe, Stem Cell Therapy Today!

Gracie’s stem cell therapy is today!  Please help us defray cost of treatment.

Visit http://www.gofundme.com/z9smdz4c

I’ll try to provide brief updates throughout the day.  Thank you all!

 

 

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Tater Salad & Mixed Nuts

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No, those ain’t nuts…

Fifty-five thousand dollars for potato salad… that’s a lot of taters. Last year, an Ohio native named Zach Brown wanted to raise $10 (as a joke) to make potato salad. Using Kickstarter (some sort of crowd-funding site), his effort went viral on the internet and he ended up having Potato Stock (a play on the famous Woodstock music festival in the ’60’s). Doesn’t look like that many people attended Potato Stock, but I hope it’s the start of something fun, maybe an annual Tater Festival in Columbus, OH. Bring on the spuds, Zach!

Anyway, what does potato salad have to do with autism and my daughter, Gracie? I mention Zach Brown’s story to draw a comparison to my efforts to raise money and help pay for my daughter’s needs. In the beginning, the intent was to use the money towards getting stem cell therapy for Gracie. Long story, short version, we decided not to pursue stem cell therapy and use any donated proceeds to buy other things (a television, a new bed, medicines, and supplements, all for Gracie). The money quickly ran out, as I only managed to collect a few hundred dollars. It’s literally been years now since anyone has contributed further.  However, we were grateful still. Now we’ve come full circle it seems, as this Thursday Gracie will be undergoing stem cell therapy. We’re melting our plastic (going deeper into the debt abyss) and using our health insurance flex-care benefit to cover the $5,000 cost of the treatment.  All of it out of pocket, as the treatment is considered experimental still in the USA.

Please help get the word out about Gracie’s blog.  Share this post and blog with your friends and family.  Ask them to do the same.  Help us defray the cost of the treatment for Gracie.  Click on the ‘Donate’ button, and give only a dollar.  Any amount will help.  Please take a moment of your time to do so.  And for those of you who have already donated, please don’t do so again.  I just ask that you spread the word.

Finally, the reason for the photo in today’s post… Your $1 and correct guess gets you a chance to win 10% of whatever proceeds we manage to collect.  Our goal is $5,000, so easy math here, that’s $500 for the lucky winner.  

How do you win?  You have to guess the number of needles in the empty mixed nut container we used to collect used methylcobalamine (a B-12 vitamin) syringes.  The exact number wins, or the closest guess.  The prize will be split equally if more than one person gets the correct answer. I haven’t figured out all the details yet, but send an email to random_walk00@yahoo.com (that’s walk with two zeroes behind it) with ‘GUESS’ in the subject line of your email, tell me how many needles you think there are, and match your email to where your donation came from.  If I can’t figure it out, I’ll let you know.  We’re going to run this effort thru to October 31, 2015.  Hopefully that’s enough time!

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Bungee Cords & Chains

Sam's run, Gracie loving  on all our stuff

Sam’s run, Gracie loving
on all our stuff

At this very moment Gracie is stimming away on the cord of her chewie… I wonder if people with autism suffer from repetitive motion injuries.  Maybe not, as she just switched from one hand to the other. Oh, now she’s back to stimming with the other hand.  I never notice these things until I decide to pay close attention to such details.  Kristine is in Miami (a funeral, unfortunately), and Gabby and my parents are in Ohio.  Which pretty much means I’m stuck at home, alone with Gracie, with nothing much better to do.  Not complaining, mind you.  It’s just that it’s dicey going anywhere with her, so it’s easier to stay home.

So I promised Kristine a new kitchen countertop if she stuck with being a public school teacher, and landed another contract.  She fulfilled her end of the bargain, and I was going to hold up my end.  Got quotes and all.  Then it dawned on me yesterday that for an equivalent amount of money (what it will cost to replace our countertops), we can get stem cell therapy for Gracie.  I couldn’t, in good conscience, ignore my misgivings then about dropping a chunk of change on our house.  I had to say something to Kristine.  So, we scrapped the idea of upgrading our kitchen, and I’m meeting with Dr. Jasen Kobobel (yes, that’s Jasen with an ‘e’) on July 17 to discuss stem cell therapy for Gracie.  Dr. Kobobel makes no promises, but I’m willing to give it a shot, even if the treatment only offers a chance of meaningful improvement in Gracie’s condition.

Finally, getting to the title of this post… Bungee Cords & Chains.  Earlier this year I visited with some buddies of mine in Ohio.  We’re sitting in a bar having some drinks, and one of my friends asks me how Gracie is doing.  I decide to tell them one of my recent stories involving the trials and tribulations in Gracieland, about the frustration that ensues at almost every meal.  Given my engineer mindset, I explain I like to break problems into smaller pieces, and then address these smaller pieces one at a time.  Meal time as a whole is a challenge, but if I could just figure out a way to keep Gracie from getting up from the table, life would be better, albeit in just a small, incremental fashion.  So I came up with the idea of bolting some hardware to the underside of our dining table, to hook Gracie’s chair to the table via bungee cords.  The problem is, Gracie manages to push herself away from the table, only to have the bungee cords slowly drag her back to the table.  She pushes herself out, and is pulled back in.  Out, then back in.  Well, you get the picture.  As I’m explaining all this to my friends, I’m struck by the hilarity of what I’m saying, and I begin laughing uncontrollably.  I couldn’t breathe, I was laughing so hard.

I catch my plane back to Melbourne the next day, and throw the bungee cords away when I get home. Chains work much better.  Now, if I could just figure out how to keep Gracie from throwing her cups and plates… I’ve some ideas, but I just haven’t reached the point of pain yet where I’m compelled to do something.

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You don’t understand…

Gracie's owie

Gracie’s owie

“What, we’re cooking in the bathroom now?” my sister-in-law asks me,  after seeing me bring our Crockpot dinner into the kitchen from our master bathroom.  I tell her she doesn’t understand, that EVERYTHING has to be secured.  She puts her hand up to me and says, “No, I understand.”  Later, she leaves a plastic cup of tea, unattended, on the kitchen counter.  A few moments later Gracie comes by, grabs the cup, and throws it across the kitchen.  Kristine and my sister-in-law then have to mop it up.  No, really.  You do NOT understand.  Sorry, Sis.  I have to poke fun at you.

Later that same evening, Gracie trips over the safety gate we have at her bedroom door. Kristine thinks Gracie may have seriously hurt herself because she is limping.   That doesn’t bode well, because Gracie has a high pain tolerance.  I shrug it off and say she’s fine.  The next morning Gracie can’t bear any weight on her left foot. There goes our morning.  Gracie misses school for the day, because we take her to Urgent Care and have her ankle and foot x-rayed. The nurse asks me if I want to wait outside while they take the x-rays.  The nurse doesn’t understand. I need to be next to Gracie I tell her.  I ask for the lead vest and say, “What’s a few more rad?”  The nurse fires away, taking x-rays while I hold Gracie still.

Turns out she has a chip fracture  on the ankle end of her fifth  metatarsal, one of the long bones in her foot.  The doctor gives us a sort of boot for Gracie’s foot to provide support for the area, and lessen the pain while walking. We try the boot on Gracie, and with relief, we see she manages to walk.  Good, cause I was quickly tiring of lifting her to and from her wheelchair.

I need to get her an extra tall safety gate now, because I had raised the current one we have to keep her from climbing over it (hence, the reason she tripped). As I write this she picks up a plastic cup,  empty thankfully, throws it across the kitchen, and merrily clomps into our family room.  Can’t even leave dishes out to dry like normal people.  I think she likes the sound the boot is making.  The next day my mother-in-law ends up having to take the boot from her, because she’s turned the boot into a chew toy.  Sigh…

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Exercise in Futility, but Doing It Anyway!

pottyOn a recent post I suggested some titles for future post ideas. Here’s the follow-up to one of them…

Well… I say I’m going to do it, but I’m not really motivated, to be honest.  Potty train Gracie, that is.  Let’s face it, folks.  It’s been thirteen years.  If Gracie hasn’t caught on by now, what makes anyone think things will change?  A few weeks ago my parents were talking to Kristine and I about potty training.  I didn’t want to hear it, but sometimes we need others to push us a little, even though we might not like it.  I know people have good intentions, but what frustrates me is that talk is easy.  Actually doing it is a completely different story.

I go from being annoyed by my parents (Mom and Dad, I love you, sorry), to suddenly being struck by inspiration.  “We’re going to do this,” I say to myself.  We’re going to chart the times she does the #1 and #2, to see if Gracie has a pattern.  We’re going to take her to the bathroom every 20 minutes and sit her on the toilet.  We’re going to teach her how to pull her pants down, and so on.  I talk about these things with Kristine, but she doesn’t seem very enthused.  It’s simply easier for Kristine to just change Gracie’s diaper without all the fuss.

But I’m stubborn.  As the day is long.  I even surprise myself how much I can be this way.  It’s like a character flaw of mine, I guess.  I know I’m that way, and know I should let some things go, but I just can’t .  I want to, but I can’t.  Sure, I get discouraged.  Really discouraged.  But I keep putting one foot in front of the other, once I set my mind to something.

So I badger Kristine a little about how we need to teach Gracie how to pull her pants down, and then up.  That would be a good first step, right?  How we need to chart her wee and poo times, etc.  So I begin using ABA (Applied Behavioral Analysis) techniques, hand-over-hand prompts, and verbal prompts to help Gracie through all the required bathroom tasks.  I don’t think Kristine is on the bandwagon yet, but I’m hopeful she’ll rise to the occasion.

Us normal people take so many things for granted.  When it comes to teaching autistic people how to do something, every single task has to be broken down for them.  Every, single, task.  I thought to myself, “Pulling pants down?  No problem.”  But then Gracie’s teacher wants her to wear a belt.  That just made everything more complicated!  “Obstacles are challenges,” I say to myself.  Bring it.

“Gracie, undo your belt buckle.  No, you can’t pull on the end without first pulling it out of there (the metal hoop that keeps the belt end tucked in against your waist).  Okay, now you can pull on it.”  I take her hand and direct it to the pin that is now out of the belt hole, and have her move it away from the hole.  “Okay, undo your button.”  She tries to simply push her pants down, diaper and all.  “No, Gracie, undo your button.”  I take her hands and show her how to undo her button.  “Okay, unzip your pants.”  Gracie has this part down pat.  Awesome!

—We interrupt this blog post for a diaper change—

So I go to check on Gracie (who should be sleeping at this moment, but isn’t, of course), and she’s done the #2.  While changing her, she’s flailing her arms and legs, being all spastic, and I’m trying to keep her from making a mess of things.  I manage to block and move inside a kick to my head.  Fortunately, the blow was only a glancing one.  Managed to keep the bedclothes from getting soiled.  Yay!  Okay, I got a tiny bit of poop on them, but I wiped it up.  Just didnt’ feel like stripping the comforter tonight, okay?  I’ll do it in the morning.

—Now back to potty training—

After the diaper change, now we have to do everything in reverse.  “Okay, you do it, Gracie.  Put your pants on.”  She puts both legs through one side of her pants, and tries to pull them up.  “No… take them off.  Here, hold onto your pants.”  I have to take her fingers and fold them over the waistband of her pants, to show her that I need her to hold her pants.  “Okay, now put them on.  I know you can do it right.”  She gives me her silly grin, drops her pants, and does a beautiful, reverse swan dive onto her bed.  I bust out laughing, and Gracie laughs with me.  “Let’s try this again.”  She lays down on her bed, puts her legs straight up into the air, and manages to put her legs through the right places in her pants.  Not the way I wanted her to do it, but whatever.  She then stands and pulls her pants up.  But most of the waistband rolled up as she pulled her pants up.  I have to show her how to fix her waistband, and we haven’t even gotten to her zipper, the button, and the belt.  Oh, and I forgot about having to teach her to wipe herself, thanks to a good friend reminding me of this.  That will be interesting.  Jeez, this isn’t going to be easy, and it may never work.

Some people think if you can train a dog to do his business outside, then training a person shouldn’t be much harder, right?  My daughter isn’t a dog.  She’s a person with a complex brain disorder, characterized by difficulties in social interaction, communication, and repetitive behaviors.  Besides, Fido doesn’t have to contend with pants, belts, buttons, zippers, and all that.  I remember reading that an average dog has the intelligence of a normal 3-year old child, which is very smart, if you ask me.  Gracie’s cognitive function is closer to that of an infant.

Finally, a shout out to the Autism Daddy blog.  I know how you feel, man.

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Adventures in Gracieland

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The Face of an Angel

 

In thinking about my next blog post, I thought of all the events that have transpired the past two to three weeks.  I started jotting down some ideas for posts on a small piece of paper… quickly filled both sides.  I think the post titles are descriptive enough.  I’ll fill you all in on the details later.  For now, just use your imagination to try and fill in the blanks.

  • Bathtub Tsunami
  • The Pink Blob (hand sanitizer)
  • Water Pinwheel
  • Bankshot (soap bar off of mirror)
  • Axe Kick
  • KC and Sunshine Band (Gracie loves music)
  • Trepidation (there’s gators in them there waters!)
  • Poltergeists
  • Fridge Lock Break
  • Bungee Cords & Chains
  • Why is There a Diaper in the Hallway?
  • Brownie Crumbs
  • Voices in my Head, or are There?
  • Foundering (and the Subsequent Cleanup)
  • Reddit Hate
  • Grapes of Rage
  • Expert Blotting
  • Autism Daddy Blog
  • Exercise in Futility, but Doing It Anyway! (potty training)
  • Apple, Core, Stem, Seeds and All
  • Mama’s Earrings
  • Random Places (sippy cup)
  • What Stupid Vitamin Bottle?!
  • Oh, and about Famous People…
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Groundbreaking science…

stem cellIn Brevard County, Florida.  That’s the caption on one of Dr. Jasen Kobobel’s flyers promoting his practice, stem cell therapy, and PRP (Platelet-rich Plasma).  Last night I decided to attend a small seminar being held by Dr. Kobobel, at one of his facilities.  After entering the facility, I get on an elevator with an older man who is severely crippled.  The man asks me the purpose of my attendance, and I tell him I’m there on behalf of my daughter.  My curiosity piqued, I ask him for his reasons, and I learn he has MS (multiple sclerosis).  Watching this man struggle to get a plate of hors d’ouevres and to his seat filled me with pity for him, yet I was inspired by him at the same time.  This man clearly is in it for the fight.

Once inside the meeting room, I meet Dr. Kobobel.  Suffice it to say, Dr. Kobobel is an extremely intelligent man, and with a good amount of charisma.  At least, that was my impression of him.  After everyone is settled, Dr. Kobobel launches into his presentation.  The ramifications of stem cell therapy and PRP, I learn, are astounding.  The United States is fifteen years behind Europe in stem cell research because of the hang-over effect from the moral outrage over stem cell research via fetal tissue.  But now we’re lagging in research due to ignorance, because fetal tissue is no longer needed.  You can now get stem cells from your own fat tissue.  One supremely stupid example of the laws regulating stem cells in the U.S.:  you can obtain stem cells from your body, store it cryogenically (deep-freezing), but you cannot inject your own cells back into your body.  You have to go out of the country if you want to do that.  However, don’t freeze it, you can do what you want with it, as long as you don’t amplify it.  Then I wonder if stem cell patients are robbing Peter to pay Paul.  But, obviously, to explain all this in a single blog post isn’t practical.

Anyway, I learned stem cells, in conjunction with PRP, can bring about near-miraculous healing in people with severe knee pain.  Five years later these same people report their knees continue to function normally.  I learned people with Type I diabetes are able to go off of their insulin shots, and still reported normal pancreas function two years later.

Dr. Kobobel tells a story of one of his patients who is severely crippled, another man with MS.  Bound to a motorized wheelchair, only able to get around by using the fingers on one hand to operate the joystick of his wheelchair.  This man was beginning to lose control of his sole remaining, functional limb (and not very, at that).  His body had developed pressure sores, and he was struggling for breath as his disease began affecting his diaphragm.  Dr. Kobobel tells the man not to expect too much, but the man insists on treatment, worried only about losing his mobility via his hand.  After receiving stem cell therapy, the man’s hand was restored to function and he was able to breath normally again.  His pressure sores, which his family had to clean EVERY day were healed.  The family apparently elevated the doctor to hero status, rightfully so.

Someone in the audience asked about the costs.  Dr. Kobobel explains that since stem cell therapy in the U.S. is still considered experimental, insurers won’t cover it.  So the costs are all out-of-pocket, and amount to $5,000 per treatment area.

I asked about stem cell therapy for autism.  Dr. Kobobel tells me that stem cell therapy is becoming THE standard of care for children with autism in Europe.  Young children, that is.  I ask about thirteen year-old children, which is how old Gracie is now.  Dr. Kobobel, unfortunately, did not hold out much hope for me in Gracie’s case.  If there was a window of opportunity, we may have missed it.

Will I finally pursue stem cell therapy for Gracie now?  I’m leaning strongly towards no.  After dropping $900 dollars on GcMAF injections, thousands of dollars on various other medicines and supplements, and seeing no tangible improvement in Gracie’s cognitive function, I cannot justify spending thousands more on something that might help.

 

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