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.
April 2, 2011
When Autism Awareness month isn't so cute.
On this Blog, on my Facebook page, in any e-mail or conversation, -- I am very open and honest about everything in my life. The good, the bad, and most often as others seem to take that honesty lately, - the ugly. I simply know no other way to live. Having a son who is non-verbal and who has autism, the real kind, not the cute Rainman kind, has taught me to be nothing less than real. My son knows no other way to live, and therefore that's how I choose to live.
Granted, I make mistakes, do not live politicially correct, and many in my own Christian community probably frown on my forthcoming'ness. Be that as it may. Refer to opening paragraph for explanation.
And so for this month of April, National Autism Awareness month, I have upheld that standard of honesty, no matter how imperfect, no matter how.... inappropriate.
I'm just tired.
Tired of cutsie-campaigns for this month that do nothing but contribute to the crap.
And it makes me down-right cranky!
I'm tired of people thinking "Life with Autism" is something to just be aware of or accepted.
I'm tired of people thinking that if we all just "Light it up Blue" or "Walk Now" or any other cutsie-campaign like that -- the problem will be solved.
Well it won't.
You can light it up blue all you want, but it will take green to put that awareness into action. Not giving green by walking for those who light it up blue, but giving green to those local autism organizations and programs who actually help families all year round, and not just take from them and leave, one day a year.
This picture above can seem like a "cutsie" picture. But it's anything but. It represents what this month represents. Autism. Awareness.
My husband and "other son" are at the Blue Lagoon in Huntsville, TX for Matt's Open Water Diving Certification. While I would have loved to have gone with them, I couldn't.
Autism awareness fact: Many families have "other" son's. "Other" daughter's. "Other" children. You know, those "other" children who are seen, who are there, but who are lost in the demands of autism. Those who like my "other" typical son did for two solid years, which was to sit in the back of the car early mornings and late evenings, with his "cutsie cup of cereal" as we took the child with autism to special schools an hour away and special therapy appointments after a full day, etc. The ones who give you Senior Graduation Announcements one day, causing you to sit there staring at them wondering how the hell that happened. When that happened. Guilt-ridden that finally in the life of the child with autism things have calmed to controlled chaos, instead of the uncontrolled chaos of the early years, and that you can finally spend time with that "other" child and get to know him. But then Wham! the Graduation Announcements stare at you as if satan himself is sarcastically sneering at you with a smile, saying ... it's too late.
Autism awareness fact: No respite, no trained attendant care provider to call upon for a day. And because of the non-cutsie brand of Autism Brandon has, it is not practical to take him with me, unless all I want to do is chase him away from the cliffs where he could fall in the water he's so enchanted by, and then drown. Drown because I can't seem to teach him how to keep his mouth shut in the water, it's too powerful a sensory thing for him to 'feel' the water with his tongue. That, coupled by the fact that he has spontaneous, unpredictable seizures, - and our every 45 minute "habit training" toilet training regimen, - and you see further why bringing him would not be fruitful. It would be nice to all be together, but then once again, the attention is on the child with autism, and the "other" child is just ignored. Again.
Autism awareness fact: My son is 17 years-old and still cannot be left alone. He requires constant supervision. Every second, every minute, every hour, every day, every week, every month, every year, for his lifetime. Parents with my son's non-cute kind of autism, might never get a chance to 'enjoy' empty-nest. 'Enjoy' their leisurely golden-years....
So, while it's just Brandon and I at home alone for yet another such weekend of "tag-team-family" -- I thought I would do some cleaning. Top on every family's list for a fun-filled weekend.
While I was downstairs cleaning one bathroom, Brandon apparently wandered to the upstairs bathroom that was inadvertently left unlocked.
Autism awareness fact: Families live in perpetual lock-down. Cabinets locked, Refrigerators locked. Stoves locked. Windows locked. Closets locked. Bedroom doors locked. Bathrooms locked. Windows locked. Doors locked. Gates locked. Pools locked. Garage doors locked. That's not cute by the way, if you were smiling at that. We're not parents, we're freaking custodians walking around weighed down by ginormous keychains with keys to unlock everything. Again, that's not cute. Try living your life wondering every waking moment if you remembered to lock something. Try living your life having to unlock something to get anything. Try living your life with the guilt of being the one who perhaps in a moment of normal-ness which is not a luxury autism families can have, left the gate unlocked and the child wandered out and got lost. Or left the bathroom door unlocked and the bathroom and whole house was subsequently flooded.... (our house has been flooded five times now due to such 'normal' forgetfulness)
So when I heard the water running, I went upstairs. And the picture you see, is what I saw. Brandon, drawn to water, standing in the shower. Now, while I did have a chuckle at that since I choose to laugh versus shoot myself, --- it was not in fact, very funny, or cute.
Autism awareness fact: Children with autism are inextricably drawn to water. I'm not sure why, but the numbers of children with autism who have wandered off and drowned in someone's pool, a lake, etc -- are ginormous. Ginormous.
His non-cute brand of autism doesn't allow him the reminder to maybe take off your clothes first. His non-cute brand of autism doesn't even tell him until after the third-degree burn because of his sensory dysfunction, that the water is on hot and will burn him.
Autism awareness fact: Sometimes despite how many hours of Applied Behavior Analysis you've applied, they don't ever remember to take their clothes off before getting in shower. So no, autism is not bad parenting, lazy parenting, or no parenting. Sometimes despite how many thousands of dollars and thousands of miles you've spent on getting help for your child, your child is still autistic. Better, but still autistic. And that only covers those of us who do have a house to mortgage five times for those treatments. Those of us who do have insurance and are lucky enough to have found the non-autism code that gets autism treatments paid for. What about those who can't afford any intervention?
His non-cute brand of autism doesn't tell him to tell mom if he wants to play in the water, so I can be there with him if he has a seizure and falls backward in that tub with perhaps water pouring in his mouth thus drowning him. We actually did experience that non-cute kind of autism a few years ago when he was playing in the backyard in the sprinkler and had a seizure, fell backward, where the water from the sprinkler filled his mouth, throat, lungs, - essentially drowning him. The saving grace was God who allowed us to find him, do CPR, and revive him.
Autism awareness fact: Autism is a deadly disorder. I'm haunted by that anytime my son wanders from our locked-down house, anytime he's not supervised and could potentially run in front of a car he doesn't know to look for, anytime he has a seizure, and anytime he's near water.
So while I do think it is kinda neat to see pictures of all these buildings being lit up blue, it does little to highlight why we're actually doing it. It makes this month of Autism Awareness seem nothing short of cute.
And autism is many things, but cute is not one of them. It's anything but special. It's irritating. It's annoying. It's heartbreaking. It's enlightening. It's empowering. It's educational. It's Spiritual. It's both heaven and hell.
Autism awareness fact: Autism, again, is not Rainman. It's not special, nor is it a gift. The child may indeed be special in the blessing, the child is indeed a gift from God, - but make no mistake, the autism part isn't. It's not special to be the one home alone on a tag-team-family weekend, going stark raving mad by every light in the house being turned on and left on, by the incessant hummmmmmm of a child trying to re-set his internal rhythm disrupted by for him, seizures of the past week. It's wanting to sit down and watch your movie or read your book, but instead having to rewind Barney over and over. It's not being able to start, let alone finish a conversation with the voices in your head since there's no one else here to talk to, all because of the constant redirection needed. "No hands when eating!" "Let's go to potty time!" "Turn off lights!" "Shut door!" ....
Autism awareness fact: Because of all the autism awareness facts listed above, and a whole slew more that I could add and add and add, it's no wonder why the divorce rate of families living "Life with Autism", is so stinkin high. Heck, the thought has crossed my mind a time or two. I mean really, for many, that would be the only way they get a break! Get respite! By the child with autism going to the other parent's house every other weekend!
But no, thankfully an equally compelling autism awareness fact is that that which does not kill you, makes you stronger. Same is true for many marriages. The Autism, as in our marriage, highlights what truly matters in life. Making you focus on your faith, on your God, and on what a marriage is more than anything... a commitment. For better or for worse. For richer or for poorer. In sickness and in health. (Thank you Todd for honoring that commitment, even during the times when more than our love and my hotness, that commitment is what holds things together.)
I think that's why I love and fully support the National Autism Association so much.
They "get" autism. They "get" what Autism Awareness month should mean. Their Public Service Announcement for Autism Awareness is anything but cute. It is provocative. It is real. It leaves you feeling like you were aware of a tragedy that you must do something about. And while doing that, it shows us perhaps the most profound thing of all about this month: Hopeism.
The Hopeism all of us in this tight-knit community of autism share. The grit and determination that despite all the sucky and tragic things portrayed in that video, and that we each live with daily, there is hope.
We are not alone.
We will never give up.
It's what gets me through each day.
It's what puts into perspective this month of National Autism Awareness.
Please watch this video:
National Autism Association: Never Give Up
While the individual with autism may very well be cute, as my son is extremely ginormously cute, his autism isn't.
While you may think you are helping the cause by lighting something up blue, or wearing blue, or giving your green to that organization that's lighting it up blue, you're not.
Watch that video, and then find a local autism organization near you, in your community, who will use your green to directly help a family, again in your community, who needs some help, and the Hopeism that help provides for.
Michelle M. Guppy