On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!

This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

March 31, 2011

Light this up Blue..........

My friend Lenny had this picture on his Facebook profile in reference to autism and money wasted on genetic research.

I like it. Probably too much.  I keep staring at it and smiling.

Especially in light of April being National Autism Awareness Month, where a prominent autism organization has once again organized a "Light it up Blue" Autism Awareness publicity stunt, er, campaign.

I know I shoot my own foot by saying anything negative about a fellow autism organization.  I can hear people gasp and caution me that I shouldn't be "ruffling feathers".

No, I don't want to ruffle anyone's feathers.


I want to pluck the damn things!

Another fellow disability advocate put on his status an interesting reflection about the "Light it up Blue" hoop'la, er, campaign, that will descend upon us like unwanted toxic-filled multiple vaccinations given without regard to safety or caution.  He said that years ago if he heard the term, "Light it up Blue" he would have immediately thought that K-Mart was having a Blue Light Sale.  But that now, he thinks of Autism.....

Yes, we have come far in autism awareness in that respect, but we've stagnated.

It's now nothing but awareness.  It's about spending so much time and effort and money on making everyone aware of autism, that we forget to fund the things the parents need for their children with autism, who everyone is being made aware of!

Where's the action?  It's one thing to know about autism, it's a totally other thing to actually do something about it.

I wish I could brag about that part of it for once.

All I think about in reference to the "Light it up Blue" event is the Vanish toilet bowl drop-in's that I use in my toilet.  And as it flushes and all that pretty blue water goes down the crapper, er toilet,  I think of all the money that organization raises from families like mine, struggling to even help our own kids, and how it's doing nothing but being flushed down the toilet bowl of someone's exorbitant salary, some lame genetic research that does nothing to help our kids today, (doubtful to help anyone tomorrow either) some outlandishly expensive office, marketing budgets, travel expenses, and salary after salary.

All I think about are the families who think they are walking for a cure, when instead they're walking to fund a corporation that gives little, if nothing, back to the state or city or community where the money was raised from.

If I seem angry at that, good.  Because I am.  Being angry and living angry are two different things and I think it's time a whole slew of autism parents start getting a bit angry about where their money is going when they give it.

Writing this as a mom of a 17-year old non-verbal son who has autism, bowel disease, and epilepsy, as well as being the founder and facilitator of a local autism organization -- gives me the right to be angry at that.

Just tonight, on the eve of this "Celebratory month" of "Lighting it up Blue" and "Being Aware" -- I was very aware that the thump and jackhammer sounds of my son's head and limbs repeatedly banging the wood floor during a Grand Mal -- could very well have been his last.  I was very aware that we found him in the middle of that Grand Mal seizure with the side of his face covered in blood, his head repeatedly hitting the floor in that small pool of blood from busting his lip as he hit the floor when the seizure started.  I'm aware that I have no more answers to any of the "autism issues" he has now, than when he was diagnosed.  I'm aware that every waking moment for a couple of years I've had to fight the public school system and eventually leave it because they were not equipped to educate him. I'm aware that it took me a decade to find a GI doctor who would, who could, properly evaluate, scope, diagnose, and treat his bowel disease. I'm aware that when, not if, my son manages to break out of our locked down house and wanders off, I will have no means, no equipment, to find him. Even though the technology is out there. If you can afford it. I'm aware that my Pediatrician still tries to get me to give my son shot after shot with every new-fangled not properly researched vaccine out there.  And I'm being made more aware that if I refuse to do so, I could be arrested for not complying. I'm aware that I still cannot get his seizures under control.  I'm aware that I have no consistent respite reprieves or attendant care to help do one of the three 8-hour shifts I've done non-stop for 15 years now.  I'm aware that I don't know what the hell to do when he ages out of the private school he's in. I'm aware that there are not nearly enough day programs that my son, being lower functioning, would qualify for, let alone if I could even afford it if I did find one and if he does qualify for it. I am aware though, that I could give him up to the state school or state institution, where he would get all the services and round-the-clock care he needs, too bad though that it would most likely mean he's being neglected, abused, or most likely as many others like him, murdered. And I'm most aware that I can never, ever die because the thought of who will care for him when I can't, or when I'm gone, is something that I simply cannot face and something that will simply have to defy the laws of nature.

So, somehow knowing that a few dozen buildings across the world are going to be lit up to represent those things I'm aware of, does little to comfort me, let alone help me.

What would comfort me, especially as a facilitator of an autism organization who works as a volunteer, no salary, just an office in my house,  --- is knowing that I could have a scholarship fund for parents like me, in my community, to draw from for ABA therapy for their child, an educational advocate to help them fight the public school, a chance for their child to go to a camp, a respite opportunity for the parents, a tracking device, etc.

Even though the parents that speak to me about what they need say one thing, whomever is speaking to the autism organization that says they speak for us, is hearing another thing in thinking we would rather have "Light it up Blue" than "Show us the Green".

I just don't get it.

Such opportunity.

Such waste.

So yeah, go ahead and light it up blue, wear blue, or be like me and flush blue, just please be very cautious and research where you give your green this month.

And do give your green this month.

Lot's of it.

To local autism organizations.

If you're in Houston, ask me which ones!

I'll tell ya!

Written by Michelle M. Guppy --
     ....because if Brandon M. Guppy could write this himself, he would.

1 comment:

Lesa said...

Hi Guppy! Succinct and to the point. I agree w/your anger over AS! Why is all that money that dedicated, devoted families are raising, going to corporate offices and exorbitant salaries. Why aren't day centers w/real bonifide purposes being started? Why aren't family like, un-institutional homes being financed? It's been years and years since we first rallied in DC for Autism Awareness. We did a good job ~ I think we're aware now. I was just thinking yesterday as I was purchasing my son's Kinnikinnick bread at a local SUPERMARKET and his Pamela's chocolate chip cookies at WAL-MART, "Who-ee: we have come a long way on awareness. If this stuff is local, corp must know about bio-med for sure. NOW: Where's the Autism Action: pro-action and re-action! We had Autism Awareness Day on April 27th for a few years before AS decided it needed to be changed. Why? Why did all of that marketing and publicity money needed to be spent for that. With you in ire, Michelle!!