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
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.
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.
March 23, 2011
On January 3, 2011 when as a family we spent the entire day, my Birthday, downtown as our son Matt went through the enlistment process for the U.S. Navy, - that casually remarked August 16th "Ship off to Boot Camp" date seemed so very far away. But now, 150 days is awfully close to only 100 days. Then 50 days. Then 10 days. Then 1 day.
And so I find myself both laughing and crying on this "150 days to go" day, about all that "150" symbolizes to us, to me...
We, Todd and I, - refer to Matt lovingly and jokingly as "GT-150".
The "GT" being how gifted and talented he truly is. Academically, physically, mentally, emotionally. His IQ test results in the superior range, athletic ability in the amazing range of how effortlessly, beautifully, and fast he swims through the water. In how he is so much more mature in so many ways than his peers, and in how he just gets things. I have always been truly confident that you could take Matt and dump him anywhere in the world, and he would find a way to survive. He just has that much common sense and McGyver'ism about him. If he were captured or kidnapped, he would talk them to death about anything and everything, and then he could escape.
The "150" being well....the other end of that. The goofiness, those moments when we wonder if the IQ test person somehow got some numbers mixed up or something. Those moments when he's his father's son and not mine! The time at a swim meet when he was swimming the 200 freestyle, in first place, but for whatever reason when the million other things he thinks about while swimming a race distracted him to where he lost count of what lap he was on, caused him to think he was done after swimming only 150 meters of the race. Where he proceeded to take off his cap and goggles and wait for the others to finish. When he realized what he did, he turned around and swam the last 50 meters and still placed.
That's when "GT-150" was born. He can, and did, score in the top 95% of the nation in academic tests for the Navy, scoring high enough to qualify for the highest job there, Nuclear Engineering; - but yet forgets how many laps are in a 200 meter race, or where he put his wallet.
Yep, that's our son.
The one I love, we love...
The baby who was a joyous miracle to me. The toddler who exhausted me with his energizer, inquisitive self. The child who amazed and amused me. The teenager who (how much space do I have?) angered me, sharpened me, taught me, bewildered me, had patience with me, - made me proud, made me want to hang on tighter when I knew I should be gradually letting go, - and the young man now at eighteen years old and enlisted in the Navy, who in 150 days and counting, will dare to test even further the limits of my mental and physically abilities to recover from him leaving for longer than he's ever been away from us in his entire life to this point!
All I can think about is whether or not in the time I had with him, I impressed those whispers of wisdom deep enough in his mind, in his heart, in his soul, - for him to hear when I'm not there to remind him?
Did I focus too much on the times we yelled at times like when he and his friends threw a gatorade cap into a room full of testing students making them think a grenade just rolled in and was about to explode?" (These and other brilliant spur-of-the-moment antics recorded on "The Chronicles of Guppy" at Goodson Middle School)
Did I tell him enough how proud I am of him in that he isn't someone disturbed who would actually throw a grenade in a classroom?
The culmination of eighteen years of parenting coming down to the last 150 days, until like it or not, that switch from being parent, to hopefully friend, is forever flipped.
Did I do it right? Did God really entrust such a precious, perfect life, to someone as imperfect as me?
Did I focus too much on him being at church versus ensuring my house and how we lived, was a church? So that wherever he finds himself with the Navy, or as a Seal, he will know and feel God's presence outside of a church he may not have the opportunity to attend?
More than whatever scripture he may or may not have memorized, did he memorize faith? That when he's seemingly a lifetime away, perhaps feeling homesick, things aren't going his way, he will have that to cling to when no words come to mind?
And in this fast approaching adulthood, did we talk enough about the fact that you marry not just someone your flesh may desire, but someone who your heart cannot beat without? A woman so closely connected to God that you would have to more fully seek Him to find her?
Somehow worrying if he would go to Kindergarten in pull-ups or whether or not he had on clean underwear and remembered to wash behind his ears -- seems so silly now!
How could I possibly pass a parenting final exam when there never were any "Parenting for Dummies" guides to study from? I'm thinking that's where the Bible comes in as the ultimate parenting manual. We have tried to convey to Matt to live for God, do as God did, think as God would. Because if he tries to live for anything or anyone but God, do anything God wouldn't do, think as the world not God would, - then he'll find himself in more trouble than his Seal instructor or boss could ever dish out!
In wondering if eighteen years is enough time to do all a parent must do, I'm comforted by the fact that I've had just enough time to do it. Each day with my son, is just enough time to make the most of.
And I'm equally comforted by the fact that for as many mistakes as we may have made as parents, me as his mother especially, I feel we did some things right.
Going against those standards of rush, rush, rush....have, have, have....
Choosing simplicity over complexity.
We held him back from starting school just as soon as the state said he could start, giving him an extra year to be a boy. Figuring he had the rest of his life to be a man!
Teaching him to not be so materialistic in thinking that things matter, but rather knowing just how much people matter.
Not allowing summer school to keep up with the standards set by....someone's standards. In that life is all about academics and graduating with the most credits, the highest GPA.
Those things are important, but they're not everything.
Especially when you start viewing them as the only thing.
No, there's more to life.
There's the exploration of being a Tom Sawyer in the summer at Grandma's, - playing in the creek, laying on a log dangling over the creek. There's the summer school of life. Taking apart a washer to see how it works. Helping his dad fix cars, computers, plumbing, electrical outlets - so that he will know how to things other than take tests and do book reports.
I like to think we, meaning his father, did that part really well.
But even with that, I feel that the most credit for the man our son has become is of course God, but perhaps a close second to that, his brother's Autism.
It's taught him everything we never would have known to.
It's taught him everything he will need for the rest of his life.
It's taught him what even the most academic of academics can't!
It's taught him how to view others, who matters, what matters, how to overcome challenges, and most importantly it's taught him how to survive and how not to quit.
His brother has never, ever had the opportunity to quit autism. His brother has never, ever had the opportunity to wake up thinking, "Screw this, it's too hard, not gonna do it, I quit...." It's taught him that there are no mental health days for autism, no sick days from autism, no vacation away from autism, and no opportunity to just go AWOL from autism.
Knowing that right there, separates him from most adults who think they can just leave a financial burden, job, marriage, family, even their own life, -- when the going gets tough.
And so I feel confident that 150 days from now, when Matt's father (and the military personnel there that day available to help him), attempt to rip him out of my arms when it's time for him to walk out that door -- he too will know that no matter what situation he is in, no matter how many mistakes he's made, no matter how bleak the outlook is, no matter how many times he's tried and failed, and no matter how much pain he's in causing him to want to give up and quit --- he won't quit.
Funny how that fine print of autism is something that much like every other fine print, you don't ever notice or pay much attention to when you first read it.
How for us it has prevented one from possibly ever having the independence to leave home, while being the one thing that has truly equipped the other to live independently.
Damn you autism, thank you autism.
Tick tock, tick tock....
We did organize a special event here and there, and still answered as many e-mails and phone calls as we could. We still share information and attempt to keep our website current...
But as inspirations are supposed to do, they inspire you.
Recently being given "The Jefferson Award for Public Service" for our autism work in our area and our network for Texas -- has indeed been the inspiration needed to continue on in what we do, and to see if perhaps we could do it even better.
We are planning our meetings that will resume in September, we have worked out with Desperate for Respite, for that organization to provide childcare so parents can attend, --- but all that and more requires funding.
Our "Show me the Money" Scholarship Fund has been drained for a couple years now, and oh how I would love to resurrect that committee of community folks to resume awarding funds for parents who need ABA training, parents who need Advocates to attend ARD's with them, students with autism who need to go to social skills camp, - or even for the first time ever, - camp!
And that has me banging my head on my desk while singing the fundraising-idea blues!
I could have my staff research and write grants in attempts to apply for and be awarded money... But no, that won't work. We don't have staff and all our time is spent in trying to keep up with helping parents who need help now and not an answering machine because those organizations who do have staff and money with which to make more money with, are too busy off making that more money!
I could organize a "walk" for Houston, where I brainwash everyone I know to form teams to raise money to cure autism, when it's really mostly for me to send to New York to pay for enormous salaries and offices and travel expenses; and only maybe if anything, return 10% of that back to helping the people, the community, the state where it was raised from.
But no, nope, - can't do that one. Wouldn't do that one! It's already being done by someone else!
Let's see what else I could do...
I could organize an event and bring in an inspirational speaker, charge money to parents of children with autism and disabilities so they could be inspired, because if there ever was a group needing to attend an inspirational event to be inspired, it would be therm, --- to cover the cost of that, and then hope they were so inspired they will give me even more of the money they don't have in the first place because they are parents of children with autism and disabilities and all their spare money goes toward that!
That was one of the better ideas I've had recently. And I knew who I wanted. Marcus Luttrell. My typical son Matt loves him. Marcus is his hero. Marcus Luttrell is the lone survivor of a Navy Seal team mission. He wrote the bestselling book "Lone Survivor" and speaks all across the nation. He's even featured in the video "The Shape I'm In". An awesome inspirational song and video, you really must watch it.
He would have been a great fit. The stress autism parents experience, has been linked to the stress of combat soldiers in war. So who better to speak to warrior parents than a true veteran of war!?
But, when I finally got in touch with his talent agency, I found he was booked for a solid year already!
The guy asked me what I was wanting Marcus for, and when I explained, he said he was also the talent agency for the family the movie "Blind Side" was made about. And that they were available!
Great! Until he told me how much. While choking between the laughter, I thanked him but said on our budget the best I could do was just rent the movie "Blind Side" and sell popcorn for $5 a bucket as a fundraiser! Assuming that is, that there would be people out there who haven't already seen the movie.
So yeah, I'm not getting very far on the whole fundraising thing beyond just saying, "Folks, we need your donations to do what we do...."
Somehow it shouldn't be so hard for a community to understand that...
It definitely shouldn't be that hard for National Autism Organizations to understand that.
That it's not so much about throwing all our money toward the big picture of a cure for tomorrow, that we forget that in the meantime there are people in the little picture who need funding and help to simply survive today.
The Jefferson Award was all about just that. It was about community. It was about helping someone today. About one person doing what they can. About bringing everyone together to pitch in where they can and how they can. And if they don't have time, how they can still be a part of it by giving their money. As little, or as much, as they can. I've had two checks come in this month... They both exemplified just that. One from a company that could give $1000.00. Another from a parent who could only give $35.00. Both made an equal impact on what we do.
Then there's the issue of there being so many organizations that do good, how do you get past competing with them?
That was the basis of making our chapter known as the Houston Autism Disability Network. We are not just one thing, one entity. Even though we are. But rather we are the representation of a community. Of many people and organizations coming together for a common purpose. I would love for our scholarship fund to represent that as well! Funding from all organizations, for the sole purpose of helping the people we all represent.
With our scholarship fund, we have helped other organizations that directly help parents that we are not equipped to help. We gave scholarship funds to Liberty Path for them to use in marriage counseling for parents of children who have autism as one example.
Another example is partnering with organizations like Desperate for Respite. They are willing to provide childcare for our autism/disability meetings -- but again, they need funding to do that as well!
It frustrates me to no end to know that come October, "the" walk event, thousands upon thousands (as compared to the hundreds we are lucky enough to get) of dollars will be raised --- enough money to run each of our local organizations for five years no doubt -- and not any of it will go to directly serving the very people who walked for it. Donated toward it. The very community it was raised from. Heck, the very state it was raised from.
And that's what's got me singing the fundraising blues in wondering when that boomerang is ever going to come back around to the person autism fundraising is supposed to be about.... the person with autism who is here right here, right now, in this state, in this town, in this community. And their family who needs help right here right now.
March 19, 2011
About what, I'm never quite sure when they suggest that. To me, this "Life with Autism" blog is my book. It's a daily reflection. A daily adventure. It's not anything that can be typed as in a "period." "the end." type thing. No, I'm constantly going back, changing perspectives. Re-writing that which I once thought was a finished product because of that new perspective, insight, or realization. The present ever evolving, fluid. Not something I could permanently capture on a page with a perfect "In the beginning" and a "Happily ever after..."
The future not something I am privy to. Except for the "Happily ever after" part I suppose. As a Christian, I do know the ending thank goodness. And it's a good one. It makes this sometimes anything but fairytale life, worth it.
Yes, I prefer simply sharing about the present. Today's thoughts, if I have any. Today's mistakes, of which I will no doubt have many.
Today's success of simply surviving it.
I want a book to be something that I look forward to reading each day of my life; not just something I write once, read once, then put away for once and for all.
I think God likes things that way too. I think it's what he designed the Bible to be...that ultimate book. That daily inspiration. Not something to be read once then put away on a shelf to forget about and gather dust forever after.
So I dare not ever try to beat that!
Not that I could if I tried!
When people mention writing a book to me, I do entertain for a few fleeting moments possible titles. And the stamina of the editor who would have the monumental task of fixing my run-on sentences, lack of grammar-finesse; and use of periods, comma's, and dashes that would make my English teacher from High School roll over in his grave.
I like "There's Poop Floating in my Tub! ...and other Absurdities of Autism." Yep, that says it all for our family. It's been my particular brand of "Life with Autism". I would so want that to be a coffee-table picture book. One I would give to those "special" people on my Christmas list. To do my part in raising awareness that not all autism is: "Oh....autism... like the movie Rainman?" And then the ensuing commentary: "What is your son's extraordinary talent? Music? Painting? Memorization?" I'd have to answer them by saying painting. With poop...his own poop...on the walls...on him...on the bed... And then I would ask, "Would you like one of his masterpieces for your wall? I'll sell one to you for the cost of yet another Endoscopy & Colonoscopy."
I'll be sure to send Brian Deer an autographed copy. Autographed not in ink, but, yes, you guessed it....
And as far as the "other absurdities of autism" go, I think this book would have to be a series. There are just too many absurdities to explore for just one volume.
It would be more like:
Volume One - exploring the 'WTH' concerning vaccine policy gone bad. I mean mad. I mean both.
Volume Two - exploring the 'Are you kidding me' concerning the mainstream view of treatments. Or non-treatments I should say. In that they will prescribe and insurance will pay for pills to mask behaviors, but not diagnostics to evaluate and treat the conditions that cause the behaviors.
Volume Three - exploring the 'Have you lost your mind?' of cutting the budget that doesn't adequately fund the disability community in the first place.
Volume Four - exploring the hilarity of the military's most pressing problem being what to do with gays wanting to serve; when at the current rate of the autism explosion, in another generation or two they will have no recruit options but autistics who would rather hum to the engine sounds or line up their bullets in neat rows versus actually being able to hunt down and kill our enemies!
This could go on to infinity, and beyond!
For my friends who have kids with my kid's brand of autism -- my book would have to be the ever unpopular title: "So your Kid's still got Autism? What'd you do Wrong? ...and other Guilt Trips Mom's Endure." No, I definitely wouldn't need to do much research for that book. I have gone everywhere and tried everything out there. And I've spent everything and more in the process. And while many things did help, not anything recovered or cured my son. Finally, I had to decide that for me, and for our family's future, I had to make the decision that I would not continue to paddle a rowboat across the ocean and mortgage my house another three times to chase after yet another doctor, in yet another city, to fund yet another therapy, - even if that might be the one that "cures" my severely autistic son. Hence the guilt trip sub-title. If I tried all those things and they didn't work, I must not have tried them hard enough or long enough. I must not have done them right. I must be like the refrigerator mothers of long ago who were thought to just not care enough. Oh I know the critics would have a field day with that book. As parents we are to go to the ends of the earth for our children, and spend whatever we must to help them. I do believe that. Within reason. But when it takes everything out of balance as it had in our lives, and interferes with the faith of a perfect God who designs perfectly, - then maybe worldly imperfections are a part of that perfect plan for whatever reason, and whatever I do, however much I spend, will never ever be enough....
Knowing that, accepting that (dare I use that term) does not mean that we give up in any way, shape, or form. It means for us, that within reason and within our financial means, we will do all we can. Our son is recovered in a few areas, constantly improving in other areas, and yes, is still severely autistic in most areas. We do what we can and trust God to do what we can't. And live guilt-free and at peace with that.
Or maybe this book that is already creating firestorms over current claims of recovery: "Cured, ...does it mean your Kid wasn't Autistic enough in the First Place? My personal jury is still out on that one. I do know many friends' children with autism who have overcome so very many challenging aspects of autism. I rejoice with them. But with autism being such a spectrum, it's hard to define what severity of autism in the first place, would qualify for being "cured" of autism. And I do know many who claim their child was cured, who I would question the degree of their child's autism or asperger'ish-ness in the first place. Either way, I don't want to sit on the jury panel for that book review. I do believe in recovery from many of the biological aspects of autism. Gastrointestinal issues, allergy issues, immune issues, behavioral issues.... And I will say that definitely in this day and age especially, there is much hopeism to be had in allowing those affected by autism, to have many of those symptoms relieved or recovered from, no matter how "severe" the autism was in the first place.
Which leads me to the last book title I would come up with in those fleeting moments of book signings, royalties, and a life of ease from the fame and fortune that would follow...
"To Cure or not to Cure? ...conversations with my Creator" This book is one I've been researching for years now and the theme of many of my writings. It's one such book that I've re-written many, many times already. It's a book where if I had penned it those first few years of "Life with Autism", I would have definitely said "Cure!" Autism was so very bleak and devastating to us then. We saw absolutely no good ever coming from it and just wanted it gone from our lives. We wanted to wake from that nightmare knowing it was indeed, only a nightmare. But one where gradually it got better. We saw less bad and more good. We worked like crazy for even more and more good, but in the process of trying to change our son, 'cure' our son, we found that we were the ones experiencing the healing. We were shaped. We were molded. Everyone around us because of Brandon, forever changed for the better.
It's hard to say that if God were a genie in a bottle and I could rub his belly and be granted only one wish, that it would be to totally cure Brandon and make him the child we dreamed of before autism. I just don't know! The things that biologically hinder him and prevent him from living a life of the highest expectations possible for him, yes. Cure those things! But to totally make him a different person, a 'perfect' person, - well, isn't that going against the very things I stand for as an advocate? In accepting people for who they are? Isn't that going against the very things I stand for as a Christian in not judging others by implying they are broken and need to be fixed? Is by doing that saying that God is not a Sovereign God and doesn't in fact, know what he's doing? I mean, God is God. He can cure my son, but for whatever reason, chose not to as of this writing.
There is only Psalm 139 for me to understand about my son. Perfectness, potential, planning, purpose, and future prosperity. There is no need for me to ponder beyond that.
So at the risk of further controversy, I would have to say no. For us, autism is who Brandon is, and it's made us as his family, who we are. Brandon's imperfections have been the most perfect thing that has ever happened to any of us.
Either way, I could never end that book. This particular conversation with my creator will not ever be over until I'm standing before him, asking him about the "What the heck were you thinking with this autism-thing" in person.
And God indeed knows, I would ask it like that.
So you see, I could never write a book. More than coming up with something about autism people don't already know or live with, I could never decide what to call it! And based on my above commentaries, it would be much too controversial, sarcastic, and personal, for anyone but me!
Instead, I'll stick to blogging about it on the days I can actually get around to doing it. Sharing the good, the bad, and the extremely ugly. The lightheartedness, laughter, and lunacy. And the love of my Lord that I must cling to daily, if I'm indeed to survive this life with autism!
Who knows, maybe after I'm dead someone could compile them all in a true autobiography. I'd like it titled: "My Life as a Stark-Raving-Mad-Laughing-Lunatic-who-Loved-the-Lord."
And besides, just like a line in a song implies, right now while I'm alive, it's only: "A penny for my thoughts..."
But much later after I die at around 200 years old (mom's of kids with autism like my kid's autism understand that age thing) it'll be: "... Oh no, I'll sell 'em for a dollar. They're worth so much more after I'm a goner!"
Maybe then my typical son who we could never save college money for because of autism, could use that money to indeed graduate from college one day!
So you see, it's pure strategy why I don't write a book now!
March 12, 2011
I love the logo for my friend's new non-profit organization, Desperate for Respite. I love the colors of it, the brightness, and how it's so very perfect for the purpose for which it provides.
I have stared at the float thingy (can't think of the proper name for it, so "thingy" will have to suffice for now as I'm too lazy to google, "name of life saver round floaty thingy") for a while now, and only right now has it "clicked" for me the story it tells.
Why I love that logo so much.
It's because it RESCUED me.
And if by divine intervention, this picture of my son, and the word "RESCUE", is on the actual website for Desperate for Respite, http://desperateforrespite.com/home.
It reminds me of when that ring buoy (yes, broke down and googled the proper name for it) was thrown to my family by a church, to rescue us.
It was nearly 10 years ago as best I remember. Autism has made the past a bit fuzzy in parts, but suffice it to say it was a while back. My husband and I had moved to Texas for his job, and we didn't know a soul. We didn't even know about our youngest son's autism at that point. All we knew was that we were a yuppie family with two perfect children and we had life safely tucked in our pocket.
Funny how just like that, autism can rip a hole right in the bottom of that pocket and make all those perfectly planned dreams disappear!
With a diagnosis of autism sinking in, and no family near, no friends, and no church, our "yuppie" was quickly turning to "yucky".
We met a few people, tried a few of their churches, and it became glaringly apparent how fast we were drowning in the sense that we were indeed alone in this battle! If a church asks you to leave because of your child, you might as well just give up, right? Eventually, we found a church that did its best to accommodate the needs of our son, but try as they might, they were simply not equipped, and we were not yet fully equipped ourselves, to help equip them!
So, we turned to the ever-accepting, always-equipped "Home Church". And did that for a few years until I stumbled upon an e-mail from one of the few "autism" friends I had met. Actually by that point, "autism" were the only friends we even had. Funny how your kid touching, mouthing, and breaking everything in typical people's houses, doesn't ever garner a return invite. Or phone call. Or anything. Ever again.
Anyway, my friend was as "Desperate for Respite" as I was, and had found a church that had a free respite night once a month. She cautiously asked me if I thought it was legit and if we should try it out. "Free" and "Respite" are not in the autism dictionary we learned the hard way. So to actually see both words in the same sentence was unheard of. They probably wanted a kidney or something in exchange.
We'd have given up both!
A church had dared to throw out a "ring buoy" to "rescue" families who were drowning.
I'll never forget calling the number to sign my son up. The woman on the other end of the phone asked me which month I wanted to sign my son up for. I replied, "All of them."
I'll never forget showing up that night with my son. The woman on the other end of the counter asked me for any special instructions. I proceeded to give his life history. Telling her what autism was. That he would strip, etc. What to do for all the "if's" of autism. She finally politely cut me off and said, "We are prepared. We will take care of him... Go." Not only was a church willing to step way out of their comfort zone to serve in such a way, but they actually stepped further out in being trained and prepared for the disabilities they might be serving.
I'll never forget what we did after we finally decided to make a run for it and leave before they changed their minds. Nothing. We were finally set free but had forgotten how to fly. So we drove two miles down the road, pulled over in the Home Depot parking lot, and sat there waiting for the call that Brandon had stripped or something autistic like that, and we needed to go get him. I think finally after an hour we realized they weren't going to call us. So we must have gone to McDonald's drive thru or something equally as romantic as that. We most likely took a nap right there in the car. Again, the fuzzy spots of the past autism creates.
And I'll never forget when we returned to the church to get our child. We came back early so we could sneak in and perhaps stop them from sacrificing our son to some gods they worshipped or something. We were so desperate for respite that we never even checked out what kind of church we were taking him to! And I think at that point in our lives, we didn't care what kind of church it was!
But what we saw instead, was a room full of loving people laughing and caring for a whole host of differently-abled children. And a man standing in the far corner of the room where a wall telephone was, alongside our son who was handing him the receiver part back and forth. Back and forth. Back and forth.
That man we later learned, was the Pastor of the church.
I'll stop there with the "Wow's" simply because I'm not sure what four "Wow's" would be called...
If we were not already Christians, we would have accepted Christ just by the example of that church, those volunteers, and that Pastor.
We joined that church because of their example of bein' what they're Preachin'.
We were a family in need of love, acceptance, tolerance. We were drowning. They threw us a ring buoy. We grabbed it. And they pulled us into their fold and rescued us.
Which sounds a lot like what the mission of the church should be.
I know it's God's mission.
Simple as that.
Churches don't need to make it any more complicated than that.
God sure doesn't.
"Grab the ring buoy I am thowing you. Accept it. Hold on to it and I will pull you into my Kingdom..."
Simple as that.
Which brings me to the present.... And my friend's mission.
Families are still so very desperate for respite. Churches are called to not merely serve who they want to serve, who they feel they should serve, or who can give back to the church because they were served. No.... I may not be the most theological person in the world, but I think I do know that the purpose of the church is to serve who God puts in their path, when they put them in their path, and for as long as they are in their path. Not when they're better prepared to. Not when they get enough of a particular group to justify the cost of serving them. Not when it's safe or easy to serve them.
Oh how it pains me to hear otherwise in churches today! So very many churches!
How we seem to make so very many excuses for not doing what we are called to do!
We're not prepared. Ask for help to get prepared.
We not equipped. Ask for donations to get equipped.
If it ever seems harder than that, try being the individual with a disability or their family who cares for them without help.
What if we're sued? So what? How many people in Jesus' day were persecuted? Jailed? Did that stop the cause of Christianity? Did even death stop Jesus?
It costs too much! The cost of not doing what you are called to do is greater.
We have a new mission, a new direction, a new focus! God's mission is the same today, as it was yesterday, and as it will be tomorrow.
I get goosebumps just thinking of the possibilities of what my friend and her group can accomplish for the Kingdom and for our community by simply saying, "You know what? There is a need. We have a ring buoy. We're throwing it out there and we are going to rescue some drowning families. And maybe, just maybe, in doing so, we ultimately pull them into God's Kingdom as well..."
No, not goosebumps.
If you are a church, professional, or are breathing, - please consider donating to my personal fundraising term for them, simply being, "The Rescue Fund".
And you know, if you tilt that picture a click or two to the right, with my son's straws, you have the ultimate mission of that group as well.....
Desperate for Respite: http://desperateforrespite.com/home
Go ahead, donate to them! I Double-Dog-Dare you to!
Your donation will help put a "D" at the end of the word in that picture above!
What better mission for anyone to do for another person. What better mission for any church or group to help support in their community!
By Michelle M. Guppy
I do not write on behalf of Desperate for Respite, I just write about them without asking first....
March 10, 2011
I don't consider myself Catholic, Methodist, or even Baptist. I don't really have much consideration for religion. For denominations.
But I do have much consideration for Christianity. For Spirituality. For a relationship with my Lord and Savior, Jesus Christ.
I don't see Lent as something only a certain group of people participate in, even though it is something most practiced by a certain group of people.
I see Lent as something to embrace as a Christian. As someone who believes in what this season represents.
To me, it represents preparation.
I think that gets lost sometimes in the traditional practice of "giving up" of something. Fasting or sacrificing something. All very much a part of the whole "Lenten" package -- but when taken out of context, dumbs it down a bit.
To me at least.
I fell victim to that yet again. My first impulse was to think of the things that I loved most and vowed to give them up for 40 days. What those things are, is a no-brainer to most. Cigarettes, Soda, TV, etc...
For me, Facebook.
But after spending more time in prayer and studying what the meaning of this season is in terms of the self-preparation, I began to see that what I was "giving up" was not necessarily something that fit in. I use facebook to help people with advocacy issues and to encourage others. And to be encouraged by others.
So not two days into Lent, I'm already having to rethink what it means to find something that truly represents the intention of fasting, sacrifice, self-denial, and preparation, - as best I can in this modern age.
Trust me -- going to the wilderness for forty days, if it were an option, would be welcome. Anyone caring for someone with autism, let alone autism and seizures, and a typical teenage son, would agree! In fact, I think if any typical family would like to truly experience some of the harsh conditions Jesus did during that time of temptation in the wilderness, they should move in with the nearest family like mine for the forty days of Lent! In one fell swoop you would fast from sanity, peace, sleep, eating, cleanliness, worldliness, selfishness, pride, etc, etc, etc....
Ok, I digress...
Back to Lent.
Lent is about Gethsemane. About a garden near Jerusalem where Jesus prayed.
No, where Jesus struggled in prayer. Where he agonizingly released his burden, his will, to the Father's will. His Father's will.
My daily prayer doesn't ever compare to that. My Lenten season prayer definitely should.
Giving up Facebook, caffeine, eating meat on Friday's, -- doesn't quite compute with that struggle. I'm not sure anything could. I think those things symbolize more the obedience to how we should better use our time and treat our bodies everyday, than a sacrifice during one period of time in preparation for the crucifixion and resurrection of the Savior Christ!
And so I think it's not so much sacrifice from doing something, it's sacrifice in doing something.
Jesus said to his disciples: "So you men could not keep watch with me for one hour?"
So you can not even pray to me for one hour out of the twenty-four I give you each day?
So you can not even read one chapter from the book of life I've written for you to live abundantly by?
So you can not even give up one hour of serving self to serve me by serving others?
So you can not even give up one hour of spending time with friends and building those relationships, to instead focus on building our relationship?
Lent is about the temptation of Christ. About forty days in the wilderness where he went to prepare himself for the mission the Father sent him to accomplish. It's where satan did his darndest to entice Jesus to do his own will over the will of his father!
I can relate to that as a sacrifice for sure! How many times daily are we tempted to do our own will, versus the will of the Father? How many times daily do we fall victim to our own flesh? To our own emotions? I barely survive one day, let alone forty!
In that short paragraph above, there are three things that are more often than not, impossible to give up!
Makes giving up caffeine seem pretty easy in comparison! Something possible to do in the face of those impossible things mentioned!
Yes, I'm rethinking my "sacrifices" for Lent.
I don't ever entertain hopes of being known for my scripture memorization or how well I radiate what a "perfect" Christian would look or sound like.
But more-so during a focused season of Lent, and carried over throughout the year, I do want to entertain hopes of being known for attempting the impossible.
And perhaps in the attempt of the impossible, the possible happens.
It seems pretty impossible for a man of flesh to survive forty days in the wilderness with no food, being tempted and tempted and tempted again, each day weaker, each temptation most likely stronger.
How did a carpenter, how do we, survive such temptations?
By being fed by the Father's words.
By being in continual prayer.
Lent is about preparation. Of mind, body, and soul. About a period of time representing forty days and how over and over in the Bible that preparation led to some special action of the Lord.
For 40 days and nights Jesus was tempted in the wilderness, and then his ministry began.
For 40 years the Israelites wandered in the desert, and then they entered the Promised Land.
For 40 days and nights it rained and flooded the earth destroying everything and everyone, and then new life began.
After sealing of the covenant at Mt. Sinai, Moses spent 40 days and nights with God, and then the covenant was renewed.
Elijah fled for his life traveling for 40 days and nights, and then God strenghtened him to resume his ministry.
For those of us who are Christians, the 40 days and nights of Lent prepare us for Holy Week, and for the Resurrection of Easter.
For me, more than giving up something that hasn't necessarily been a negative thing, doesn't quite fit!
I think the sacrifice for me for the rest of Lent, needs to be the excuses for not doing that which prepares my heart, mind, and soul to receive what the Lord has for me!
That means putting scripture first. Reading it, studying it, meditating on it. And not just the sound-bytes I get between doing this or that.
It means then praying for a focused amount of time about what I've just read. Struggling in that prayer. Agonizing over prayer. In addition to the continual sound-byte prayers that get me through the day.
If that means those other things I thought were the ultimate sacrifices need to be adjusted, that will occur; but to just not do those other things without the preparation of why I'm not doing those things -- then it's all in vain.
It's how I should have better prepared for Lent.
And it's the real sacrifice of Lent.