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.
January 21, 2010
“There is one thing stronger than all the armies of the world; an idea whose time has come.”
- Victor Hugo
For several years now since my youngest son was diagnosed with autism, I have volunteered my time to help inform and unite parents of children with autism spectrum disorders. I know how lost and alone I felt during those “rookie” years of autism, and so it has been my mission to be there for other parents just starting out on this journey. Many parents inspired me to keep on keeping on, but it was one parent in particular who motivated me to write this.
I recently had the privilege of attending a policymaking class where speakers from around Texas and the nation shared their knowledge and expertise. Derrick Dufresne has been the most inspirational to me.
I share with you some of his key principles, hoping it will inspire you as it has inspired me; inspire you as a person, as a parent, and most importantly, as an advocate for yourself or for your child, with a sense of urgency and passion as never before.
As a parent of an 11 year old son, one of the quotes I love from the session is, “The only way to predict the future is to create it.” The only way to ensure that my son has the supports and services and freedom of choice when he is an adult is to work my hardest to create that now, today. I can’t sit at home and hope for the best, wondering what services and supports will be available for my child when he is 21. I need to work now to show my legislators the need to create those services!
Advocating now to create the best future I can for my child is required because “Due to budget cuts, the light at the end of the tunnel has been turned off.” Texans, we need to form a united army and advance our way to a better future for our children so that light can be turned back on! If, as I learned, a bunch of parents can get a school to reverse a ruling against cupcakes at lunch, then surely we can unite to achieve something a bit more substantial!
In January 2005, a new legislative session will begin in Texas. This is our chance to channel our many different voices and views for a common purpose. It seems to me that the common thread is what’s best for the individual; housing supports for individuals to choose where they believe is most appropriate – whether that be an institution, state school, community based housing or at home with parents. We can collectively advocate that the funding, supports, and services follow the individual, allowing them freedom of choice.
But the only way to get that message across is to unite to make our voices heard. The families of 9/11 victims have shown how it can be done. Not all of us can go to Washington, but thanks to technology, our voices can be heard in many ways from the comfort of our homes. Call, fax, e-mail, and write your legislators and urge them to support freedom of choice!
The question is not “can changes be made,” but rather, “how badly do we want change?” In Lewis Carroll’s in Alice in Wonderland, Alice came to the fork in the road. “Which road do I take?” she asked. “Where do you want to go?” responded the Cheshire Cat. “I don’t know,” Alice answered. “Then,” said the cat, “it doesn’t matter.” But we parents must know what we want for our children in the future, and what THEY want for themselves, and work tirelessly until we get it. If we don’t, someone else sure is ready to step in and decide that for us.
“But I’m tired, overworked, and stressed to the max with just everyday survival!” you may be thinking.
We all are, but a great quote from Wright’s Law says, “When you are wrestling with a gorilla, you don’t stop when you are tired; you stop when the gorilla is tired.” Find the time, make the time, steal the time to make your voice heard! Know what you want for your child – and do not stop until you get it.
Utilize this gem from Derrick: “NO: A temporary sign of instability that requires additional pressure for someone to change their mind.” Create a new way of thinking about the word “No” as it applies to your child’s freedom of choice and rights. Do not accept “NO, your child can’t live there; NO, we can’t fund that; NO, your child can’t be included; NO, you don’t qualify for that….”
Derrick described service providers, schools, agencies, departments and legislators that say “NO,” as unstable. How can they make informed decisions when they aren’t in our shoes? Therefore, “NO,” just means that we need to go back, regroup, reorganize, and put more pressure on the system to change. No need to get mad at them, because they are just unstable and ignorant. Just pursue until you get what you need!
Derrick also used the illustration of a deck of cards, saying we were each dealt the cards we have. (I choose to believe that I was blessed by the cards I have!) Nevertheless, we do not have the option of exchanging our cards with someone whose life is better or easier. We cannot exchange them for more money, time, or power, and can’t afford to waste time wishing for better cards. These are our cards and we need to play our hand the best we can. Just ante up and play your cards for all they’re worth! The issues we have to deal with daily and in the future can be horribly depressing, but please hear the passion in these words – THERE IS HOPE. We can change things.
How do we do that? Join a local advocacy organization or listserve to stay informed on the issues. When there is a public gathering or rally, be there! Form a relationship with your elected officials – write them, call them, fax them, e-mail them, visit their office. Not just once – but regularly.
Join local/state advisory committees. When you receive an action alert, ACT! Don’t assume that everyone else will, and that you don’t need to. Elaborating on the idea that the only way to predict the future is to create it, when we sit around and simply try to predict or complain about what is or is not available for our loved one, we are the victim. But when we actively work to create a better future for our loved one, we are the victors.
Which are you going to be? The time to decide is now. The time to act is now.
“If we wait for the moment when everything, absolutely everything, is ready, we shall never begin.”
- Ivan Turgenev.
Written by Michelle M. Guppy
Ways to unite in Texas for Autism Spectrum Disorders:
January 12, 2010
Thank goodness God is merciful. One 30 second segment near the end of that movie made watching it worthwhile. The whole movie was about a rich family who hired someone to track down and “deal with” whoever kidnapped their child. The scene that woke me up, literally and spiritually, was where the bodyguard broke into an elderly couple’s apartment to stake out a meeting spot across the street. He assured the elderly couple that he was not there to hurt them – he was merely there to wait for someone to show up across the street. There the bodyguard stood, looking out the window, with a hand-held missile launcher perched on his shoulder ready to fire. After a while the little old woman said to him, “Judgement and revenge is best left for when we meet God.” To which the bodyguard quickly responded, “Yes, ma’am, I understand that. But I’m not here to be God or to judge him – I’m just here to arrange the meeting. And then he saw his target, pulled the trigger, and proceeded to arrange that meeting.
I sat on the couch in total shock at how that hit me so profoundly! Those two lines were an instant attitude adjustment for me! With a new perspective, I looked back over the past and pictured in my mind all the times my attitude was like that missile launcher perched on my shoulder aimed at something or someone. It made me realize that with my thoughts or words, I was out there unknowingly arranging meetings for people who wronged me or my child, - to meet with God! The little service coordinator lady I was a bit rude to on the phone; the insurance claims clerk I was getting impatient with because she kept transferring me all over creation; the people sitting across from me at the ARD that I was getting irritated with, because they acted like they knew better than me, what is best for my child; the truck driver poking along in front of me making me late to wherever I was going, and on and on and on.
We all have scenarios like that, there will always be difficult people and bad situations or circumstances. We can’t stop that. But we can stop how we react inwardly and outwardly to them. When we as Christians take it upon ourselves to go around with our attitudes pointed and ready to fire, we steal not only our own joy, but the joy of others around us! Raise your hand if you’ve targeted your spouse or children a time or two! What kind of witness to others are we if we treat those the worse, who we love the most or who need Christ the most? We will live a much more joyful life if we rid ourselves of the burden of carrying that attitude launcher, or any other burden that we have, hefted on our shoulder, – and instead give it all to God.
One verse that has popped in my mind ever since that movie – when things happen to cause that attitude or emotion to fire up – is in Psalms 46:10 … “Be still, and know that I am God…” When I feel my attitude-o-meter start to rise - I now recite that verse over and over…refusing to let that person or situation steal my joy.
Be still. Let God handle those situations we cannot. Our job is to be joyful and win people for the Kingdom, -- not send them to the Kingdom. And I as much as anyone know how daunting a task that is – but it’s a challenge we must take on!
Refuse to let people, situations, or circumstances, steal your joy….
Written by Michelle M. Guppy
...and just so you know that I am human, I still fail miserably at this many times.
(Job 5:19-21, NIV)
It was one of those endless weeks that sometimes plague me and makes true what it says in Psalms 69:1 – “Save me, O God, for the waters have come up to my neck. I sink in the miry depths, where there is no foothold. I have come into the deep waters; the floods engulf me. I am worn out calling for help; my throat is parched. My eyes fail, looking for my God.”
Can anyone else relate? Wally McDoogle’s book titles describe my life at times: “My life as a torpedo test target.” “My life as a human hockey puck.” And the one that is all too familiar, “My life as a cowboy cowpie.” (Don’t ask…..)
Two weeks ago, I invented my own title: “My life as a wading wild woman…”
While Brandon was having a snack after school and I was upstairs trying to finish some things for work. (If it weren’t for the last minute, I would get nothing done!) I heard the backdoor open and the dogs come running in. Fine I thought, Brandon wants to play with them, I’ll deal with the mess later. A few minutes later, all was quiet. (Never a good sign) I went to check. Brandon had gone in the garage – and then out the garage to the front yard. Matthew left the garage door open when he went to his friend’s. (He broke the 1st commandment of our house: Thou Shalt NEVER leave a door to the outside world open or unlocked!)
Thankfully, Brandon didn’t have enough time to get much further than the driveway. Thankfully, the dogs still could be seen. So I brought Brandon in and asked his guardian angels to watch him while I went back to get the dogs.
When I went back in the house not 5 minutes later, I realized that I should have been more specific to the guardian Angels.
One would think that Angels are more intelligent and have better insight – but not true apparently. While they did keep Brandon safe for that 5 minutes that I was away, I quickly found that I should have been more specific in my instructions: “Keep Brandon safe AND out of trouble.”
He had both faucets of the bathroom sink running full blast and a washrag fell in to prevent it from draining. So, my bathroom was flooded, the closet carpet wet, and water even seeped into the garage. My husband walked in from work all cheery and anticipating a warm welcome, and instead he saw a wild woman trying to contain the flood and the soaked child that caused it. So, wisely and without saying a word, (He knows better….) he just took off his shoes and socks, rolled up his jeans, and went to get the shop vac. And so began chapter 1,254 of Brandon’s Law: If I can climb it, flood it, break it, or escape from it, turn your back for just one second - and I will...
Unfortunately, we cannot prevent the floods of life from happening. But thanks to the grace of God and a little bit of humor at the absurdity of some situations we find ourselves in, we can avoid being drowned by them. We can choose to hang onto God and swim for shore, or give in and let satan or our own self-pity engulf us and eventually drown us. Choosing the former helps to make life more bearable.
Psalm 93:2 helps too: “Your throne is established from of old; You are from everlasting. The floods have lifted up, O Lord, the floods have lifted up their voice; the floods lift up the roaring of their waves. The Lord on high is mightier and more glorious than the noise of many waters, yes, than the mighty breakers and waves of the sea.”
God is our lifeguard – He is mightier than any flood! So when the floodwaters come – call out to him for help. He will either stop the flood or give you the strength to get through it by putting on his Heavenly Galoshes and wading alongside you. And while you are waiting for the waters to recede - try to find the humor in situations. For me, how can I get mad about my son flooding the bathroom? He is after all, - a Guppy
By Michelle M. Guppy
I thought about that one day during my quiet time when I was evaluating where I was in my Christian walk. Where I wanted to go…and in the legacy I wanted my story to represent for my children.
More than anything, for me doing that little self-reflection helped to define most importantly – what section I did NOT want my story found in. I do not want my life’s story found in the “End Times” section. That section is overcrowded as it is! I don’t want to add mine as well! Many people have had things happen to them that have left them perceiving life as hopeless as the literal “End Times” will be for the unsaved. Not me. Even though I’ve had my own “series of unfortunate events” I refuse to let them define or defeat me. I refuse to walk around with a “Doom and Gloom” attitude. When I go through those times of heartache and hardship, I try my hardest to visualize myself standing on my tippy toes reaching out for God’s Grace and Glory to hold on to. Yeah, satan has knocked me down a time or two – but it’s in the getting back up that counts. Giving up and staying down allows satan to win and it keeps you living a life of futility and not one of faith.
I don’t want my story to be found in the Fiction section either. I want my life to be real. I want my life story to be found in the Non-Fiction section. I want people to see what they get, and get what they see. The good, the bad, and yes, - the ugly! I think many Christians think that they have to have that “perfect smile” plastered on their face 24 hours a day. That eternal smile is most definitely fiction and only to be found in a Wal-Mart commercial! Life is not always all smiles – and to portray anything different – is to live a life of fiction. As a Christian, parent, and witness to others, I want to live a life of reality in that sometimes life is difficult and curve balls are sometimes thrown, and that they do sting when you are hit with one! It’s in the reaction to those times that defines whether your life is fiction or not. If you try to hide the problems and go it alone, that is fiction. If you try to pretend nothing is wrong when others can plainly see that huge red whelp, that is fiction. My greatest legacy to my children and as a witness – is to live a life of truth, not one of lies or false pretension.
I definitely don’t want my story to be found in the self-help section. I’ve been there and done that. It’s not all it’s cracked up to be. Everything I have tried to do alone – every problem I have tried to fix alone - I have failed at. No vitamins, diet, therapy, meditation, or yoga will fix what only God can. Some of those interventions and advice may temporarily be a “quick fix” – but they do not last very long. God is the only guaranteed solution that will last a lifetime. I’ve learned the hard way that I don’t want to go it alone anymore…. I need God, my church, my family, and those Christian friends that he has brought into my life. I want my Christian witness to be that of what God can do through me. Not of what I can do on my own.
I want my life story found in the humor section. There are so many serious situations in life that are not funny at all – there is no denying that. But those situations that CAN be laughed at, ought to be. Laughter, when appropriate, truly is the best medicine. I want to be able to laugh about it when I find that my son has flooded my house – again. When my checkbook is so far in the red that all the black ink in the world couldn’t change it. I want to be able to laugh and be joyous in as many situations as possible - knowing that God is in control and somehow he will provide; so that satan does not get the satisfaction of one single tear of despair or moment of worry. I want to laugh daily with the joy of just knowing that I am a child of God and that he delights in me! I want my children to see me laugh in the face of adversity, so that when they are older and perhaps facing challenges, they too will learn to laugh. Most importantly – I want to be able to laugh at myself. Instead of crying in humiliation over something stupid or embarrassing I have said or done (which happens often) – I want to be able to just laugh at myself and realize that a mistake is just that – a mistake. Something to learn from. And something that will make for a good story for the grandkids one day!
I’d also like to have parts of my life found in the Children’s section. Too many of us as adults are way too serious! I want to always look at things through the eyes of a child. With awe and curiosity, innocence and purity….. I want to look at God’s creations with the same wonder that my child looks at a butterfly with. One of the greatest blessings in my life – has been my son who has a disability. Not that he has the disability – but what he has taught me through his disability. No matter what his chronological age says, his thoughts and attitudes will always be in a way – childlike. With that – comes the transparency and lightheartedness with which he looks at life through. As adults we think that our age defines how we should behave. Not my son, he will always love a good tickle, swinging at the park, and Mickey Mouse. Shouldn’t we?
But most of all and more than any other section in the bookstore of life --- I want my story to be found in the Romance section. No, not with Fabio and a half-naked woman draped across the cover --- but with God, and his grace and glory covering my life. I want my life in Christ to be a sacred, intimate romance with God. I want to know him and love him and have his presence with me every moment of the day. I want to stay in God’s word so deeply that the “puppy love/infatuation” stage of my romance with him never goes away. I don’t want to grow complacent to where I take that relationship with God for granted. Much like what we should be doing in our marriages - I want to nurture that romance with God daily. I know that if I can keep my life story in the romance section with God – I will never be burned or scorned by betrayal as can happen with worldly situations; and my life, in Christ, will indeed be a happy ending.
If we can decide right now, in whatever stage of life we are in, - which section we want our life story placed – and most importantly where we DON’T want it placed; then surely, as in the song by the same name, our life in Christ will be the greatest story ever told….
Determine today, to make your life in Christ a bestseller….
Written by Michelle M. Guppy
January 8, 2010
(handpainted by Brandon M. Guppy)
This artwork above will be available for purchase in a notecard set with the poem inside, in Fall 2010. If you would like your child to submit a painted butterfly for the notecard set, please submit JPEG high quality picture to: MichelleMGuppy@yahoo.com.
Right now, in conjunction with Autistic Artist Steven Knox, Butterfly prints and notecards are available through his website at: http://www.boundlesscreations.biz/butterflies/gallery.html - pictures 01 and 02.
The story of Brandon's Butterfly.....
(as written long ago when I created my first Texas Autism Advocacy website, www.TexasAutismAdvocacy.org. I now also have the website Houston Autism Disability Network, www.HoustonAutismDisabilityNetwork.com)
"Happiness is a butterfly, which when pursued, is just beyond our grasp, but which, if you will sit down quietly, may alight upon you.”
“…and we eagerly await a savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.”
I love butterflies, and so it was no surprise that when I decided to create a website for parents and professionals in Texas for information and networking for autism spectrum disorders --- that I chose the butterfly as the website logo.
For me, the butterfly represents the transformation of my life from before my son was diagnosed with autism – to my life after …
Those first few years after Brandon was diagnosed with Autism were hard to say the least. My hopes and dreams for my son as a “typical” child – were shattered almost overnight. The enormity of what that meant, once I finally realized ALL that it meant, was overwhelming. I didn’t understand how or why my son went from a smiling, happy baby; one with a bubbling personality and sparkle in his eye, - to a screaming, shrieking toddler who refused to look at me or allow me to touch him, and wanted only to be left alone in his room.
I felt like a caterpillar – who wanted nothing more than to hide in a cocoon and not ever come out.
Obviously, that wasn’t an option.
I had to find a way to cope, so that I could get to the important business of helping my son. I had to find a way to pick up the pieces of that shattered dream, and arrange them into a new one for my son.
A butterfly proved to be the piece of the puzzle called autism, that I needed.
One day when my son came home with one of those magnetic photo frames with a picture of his handprints arranged in the shape of a butterfly. In the bottom corner was a seven circle caterpillar with each letter of his name in the circles – indicating that the picture was made by him. I remember looking at that picture and thinking that in order for me to help my son, and other families, I would have to break free from that cocoon that was crippling me. I would have to change my view of autism from it being like “a crippled caterpillar” – to it being the “beautiful butterfly” that my son’s handprint represented. I needed to break free from that cocoon of despair and devastation and do something positive.
During many tearful nights in prayer, and thanks to God’s grace and mercy, I learned how to cope and my attitude was slowly transformed from despair to hope. There is a quote I came across one day from Sally Meyer that reads:
“Autism is not the end of the world, it’s the beginning of a new one, just open your eyes, and see…”
And so I did.
Slowly, I began to emerge from that cocoon of devastation, despair, anger, self-pity, and all the other emotions that were swirling in my head. Slowly, my eyes were opened to the beauty of my child despite his autism, and in the many unexpected blessings of this new life. I found new friends, thousands of internet friends whom I have received much information and resources from; but most importantly, I learned things about myself that I would have never known otherwise.
My transformation was in realizing for the first time, what truly matters most in life, and what unconditional love is. My son is 11 and has never been able to communicate or say “I love you” to me – yet at the same time I could not imagine loving him more. My husband's transformation was in learning how to accept that which he could not fix or change. He learned the humility of being on his knees crying to God for help. My typical son Matthew's transformation was that he has become a more mature, compassionate, unselfish, big brother. His prayers at night suddenly went from, "God bless my mom and dad and please let me have a new bicycle" - to - "God please help someone unlock autism so my brother can talk and all the children with autism can be cured." He asks me if I have been saving money for when they do unlock autism - so we can afford the cure. Perhaps the most profound transformation has been in those touched by Brandon. So many lives this silent, autistic, child of mine has touched! Their lives would not have been transformed had it not been for Brandon and his life with autism.
Autism is still hard.
It is a horrible, horrible disorder. One with many questions and few answers. I know no other words to describe how autism has affected my son. To have pictures of him laughing and smiling as an infant and toddler – replaced with the blank stare of autism as a child – is just devastating. So in no way do I attempt to water that aspect down. I simply want to share my perspective of how we have chosen to turn our anguish into awareness and advocacy.
Acceptance is liberation, not defeat.
Once I learned to accept this new life and this new journey – despite the hardship and heartache - I was able to truly find joy again. Joy in knowing that the caterpillar was designed by the creator to one day become a butterfly. To accept that there is purpose in my child having autism is to know true peace. I don't have to agree with it or like it, but I must accept it. Psalm 139 says that “All the days ordained for me were written in your book before one of them came to be…” Whether by mercury poisoning from the thimerosol in vaccines, genetics, toxins in the environment, whatever, – God knew my child would be the way he is. I am not defeated by accepting that. I am instead liberated. Free to start from that point forward in making my child’s life be the best it can possibly be. Free to help other parents with what I have learned. Free to make my voice heard in support of research, legislation, and services for my child. Which I have done. I have created a network for parents and professionals in Texas who are connected by Autism Spectrum Disorders. I have worked tirelessly for the past 9 years in building that network to inform and educate and give support to – other parents. I have been to Washington, D.C. twice now to participate in Autism Awareness Rally’s. Free to know that it’s not up to me whether one day he flies or not – but to simply encourage him, help him , and give him every opportunity to try. Free to know that whether my child is cured or not, I did my very best for him.
It's a hard journey – but we have a choice.
Even the butterfly must struggle to get out of it’s cocoon – and once out – there are predators out there to avoid! So make no mistake, our journey has not been easy, nor will it probably ever be easy. As with any situation in life - there are good days and there are bad days. But we have a choice... We can choose to focus on the ugliness of autism and the limitations and challenges it brings, which can be crippling; or we can choose to focus on the beauty and blessings of our child, and what he can do...
I choose beauty.
(and a good sense of humor about it all!)
God’s Beautiful Butterfly
I am a child who has Autism,
Who may not do things exactly like you.
But that does not mean I am useless,
I have feelings and emotions, just like you.
I can hear the things you are saying,
Even though with words I cannot yet speak.
I may not be able to play sports like you,
But that does not mean I am weak.
I know there are many things about me,
That you simply do not understand,
But please don't assume things about me.
Talk to me, and perhaps offer to shake my hand.
I may have a mind that works differently,
Pages in a book – I may flap instead of turn,
But that does not mean you can't teach me,
You might be surprised at just what I can learn.
If you think when I don't cooperate, I'm misbehaving,
And conclude that I'm not disciplined enough,
Please take a moment to consider,
That the road I am traveling can be tough.
When you stare at me, point, or start to whisper,
It makes me sad, and I so want to cry ---
Why do you view me as some crippled caterpillar?
Why can’t you see that I'm God's beautiful butterfly?
c. 2003 by Michelle M. Guppy
General Disability Version available as well.
For Brandon Michael Guppy
For permission to reprint: MichelleMGuppy@yahoo.com
There is an opportunity for some Houston moms to participate in a photo shoot for the 'Warrior Mom' project in conjunction with Autism File magazine and the Autism One Conference... Warrior Mom's who are fighting for their kids with autism.... Warrior Mom's who are making a difference.....
I put out a call to Houston "Warrior Mom's" - asking them to come to the photo shoot...
One particular mom replied that she would like to be there - she was excited about it... But then, a day or so later, I received this e-mail:
I thought about it and determined that I really am not qualified to be in the photo. I am not a leader in the Autism community at all. I'm still learning! :)
And that made me think about what exactly makes a mom, a warrior mom...
And I believe I have the answer....
A Warrior Mom is the mom who sat up late at night wondering why her child would not allow her to hold him, cuddle him. The mom who was scared each time her child screamed for no apparent reason and she didn't know why, there was nothing she could see that was wrong... It's the mom who tried to understand why her son was more fascinated with the ribbon on the present, than by the actual present. The mom trying to console an inconsolable child.
When you are there, in that stage, you don't think about who or what you are, you think about what your child needs and how you will get it. And that in itself - makes you a warrior mom without you even knowing it.
When you are a mom with a child who is hurting from simple touch, not phased by hitting a wall, who can't talk and can't process too much stimuli at once without having a meltdown; - and you are going from doctor to doctor to try to get answers where there are none; oh baby -- you are SO a warrior mom during those times when you were too busy to even realize it.
When you've gone to the Pediatrician's office and finally received the diagnosis you were looking for, and it was called "Autism" - and you never heard that word before and your Pediatrician told you that there were no treatments and your child would most likely need lifelong care and possibly be institutionalized; --- and you thought that meant an "Institution" and not Harvard - then you were a Warrior Mom in the making. Because even through the shock and stunned silence, something deep inside you was offended by those words, but not defeated by those words.
No, when you left that office and were more confused than when you went in perhaps, it just made you a more powerful and potent warrior mom to be. Whether stubborness, defiance, obstinance, or just sheer pissed off'ness, --- you had an instinct to not accept that. An instinct to look further, do more, - defy.. All qualities of a Warrior Mom.
When you found a treatment and your insurance refused to cover it and you were on hold, and pushing buttons into oblivion and cursing at the computerized mechanical voice that is apologizing to you for not understanding your human voice; and you've managed to get through to a live person who told you that you needed to call another number -- all while your child was creating a poop mosaic on the floor and wall -- honey -- you were not just a warrior mom - but you were a saint. One that may have needed to go to confession after the phone call; but a warrior-mom-saint no less.
If when your child entered school and at the ARD meeting they wanted to put him in a room in a corner of the building with no aide and no real program, and you sat there in stunned silence in the ARD with whiplash wondering what just happened; -- then you were a warrior mom who was severely underestimated at that ARD committee meeting. You were a mom caught off guard that they should have been afraid of, very afraid of. Because once you went back home and talked to your other warrior mom friends - when none of you even knew you were warrior moms - just moms helping each other; ---- and then went back to that ARD demanding more for your child, knowing that there was more for your child, knowing that your child COULD do more, well, --- that was a very warrior mom thing to do. That school may not have exactly referred to you as a warrior mom -- but they knew you were a mom not to be messed with. And they were right. You do not mess with warrior moms. (Well, I guess you can -- but you'll regret it).
If you do all of that, none of that, some of that, or more than that - you are a warrior mom. If you don't even have time for yourself, but spend any time you have helping other moms on the internet late at night when no one notices, - you are a warrior mom. If you are called to rally and can - you are a warrior mom. If your only calling is to make sure your child has his GFCF lunch for school - you are a warrior mom.
There is no status or ranking or stardom in being a warrior mom. It's not a hip clique that you fumble over yourself wanting to be a part of...... To be a warrior mom takes more guts than you ever wanted to have, and it takes a humbleness and selflessness that you were not wired to have, in receiving no glory from others in celebration of the daily battles you and your child must fight fiercely to win.
Put simply, if you have a child with autism and you refuse to believe its a life sentence of doom and gloom - then you are a warrior mom.
If you are a mom with a husband and you are daily beating the odds of divorce from the stress, you are a warrior mom.
If you are a single mom raising a child with autism - I'm not sure if even warrior mom is a good enough kind of mom to describe you.
Warrior moms are called by the echoes they sense but can't hear, of those who have gone before them, to continue the battle for those who might have to come behind them.
So, Moms and Mums.... hear THIS echo loud and clear...
No celebrity mom, no matter how helpful, appreciated, giving, vocal, or how-in-the-hell-do-you-stay-that-small-gorgeous, - is any more a warrior mom than you!
If you are a mom and stood up for your child for something - you are a warrior mom and you best be damm proud of that.
Because even if the only person you ever lead is your child - that is leadership enough to qualify you to be a warrior mom.
You don't have to be on the news, in the paper, have a book, rally in Washington, or be a star in Hollywood to be a Warrior Mom.
So yes, B.B., the mom who sent me that e-mail....
You qualify to be a warrior mom, you ARE a warrior mom; and I'll see you at the photo shoot....
Written by Michelle M. Guppy
(Written March 2009)
We've got work to do folks, we've not moved much since this quote from the full essay whose link I will post below – written in 1990 by Lou Brown.
Mind you, it was written in 1990, and is referring to 20 years prior to that.
It is now 2009....
Quote from Lou Brown:
Finally, if we have learned anything at all over the past 20 years, it is that there are some aspects of a person's life that we have no right to compromise. We cannot negotiate the size of an institution-, no one should live in one. We cannot function on a committee to determine who does and who does not get medical treatment; everyone does. We cannot debate who should get an integrated education; all must. Just because we are overwhelmed, frustrated and at a loss for something to do, we cannot tolerate shocks, slaps, pinches, or any other obnoxious violation of dignity. Let the moderates, compromisers, and data worshippers go elsewhere. Let the people of TASH be value based, unbending, tough, aggressive, assertive, graceful, compassionate, and effective.
~ ~ ~
It's Sunday morning and I'm all dressed up. I have somewhere to go, church, but it's not going to happen this morning.
My husband and older son off to early prayer meeting, Brandon, my fifteen year old non-verbal son who has autism and I are left to join them later.
All dressed and ready myself, I went in Brandon’s room to wake him up; but after seeing him sleeping peacefully, just couldn't...
My husband shared with me before he left, that early in the morning when he checked on him when he woke up, Brandon was wet. "Soakins" we call it. Ok I call it. That's when everything is wet...
So, I'm sure Brandon was tired from being up so early and not able to sleep because of the wetness….
All curled up in his bed, in a peaceful, innocent, safe, - cocoon.
I stood there staring at him with more joy in my heart than I ever remember feeling.
But then each time I see him sleeping so peacefully and innocently and all 5'9" of him curled in a ball about the size of a 4 year-old, - I think that.
But this morning especially….
This morning - after reading a few months ago, the Department of Justice report of abuse and neglect and death, - of those in State Schools and Institutions in Texas.
This morning - after a solid month of nothing but more reports of abuse, neglect, and criminal activity against those just like my son, in those State Schools or Institutions.
This morning looking down at him while he slept; I could see him as the young man in the back of that van being sexually assaulted. I could see him being the young man awaken in the night and forced to fight another resident.
I could be the mom getting the call about my son, the 'client' who was "accidentally" pushed or shoved and who fell, hit his head, and died....
My husband won't even let me share those articles with him....
When I ask, "Don't you care?" -- I'm met with the most painful look and a reply of, "Don't you think I think about that every time I put him in a car with someone besides us?" And, "Don't you think I think about that every time we take him to some program?"
And then I understood why he can't read those articles.
This man, who is physically the strongest man I know, is weakened by the thought of not being able to protect his own son.
When, when did that thought even creep into our minds that it was more than a thought to not think about? But that it was a reality to fear?
And when, when did parents like me have to have those thoughts and images lurking in the back of our mind in the first place; so that we cannot even live in peace, (let alone die in peace), for fear of dying and leaving our vulnerable child behind?
And I'm not talking about just physical abuse...
When a parent has no choice but to put her child in one of those places just to get help, that is criminal.
If a child or adult is there and they are not being educated appropriately, that is neglect.
If they are not given proper medical treatment, or over prescribed with harsh medications to cover the effect while not biomedically treating the cause - that is 'doing harm', and abuse.
Where have we come since 1990 when the opening quote I used was written?
What has changed since then?
Sadly, I know the answer....
More state schools and institutions. Less oversight.
More money for those state schools and institutions. Less for community supports and housing.
Our numbers have grown...those of us in the disability community, and for me, the autism community.
Why hasn’t the sound of our collective voices grown as well?
Have we fallen victim to the fear of failure, so that we have quit trying to succeed at all?
Do we think someone else is going to do it for us?
Or that we are tired of doing it alone?
I hope not.
I have faith that we can succeed.
I know that no one else is going to do this for us, we must do it for ourselves.
I know I'm not alone, and am joining with those who are doing what they can as well.
This morning, I let my son sleep late because he was tired. If he were in a state school or institution would that be allowed?
I check on him no less than 3 times before I fall asleep each night, to make SURE he is dry so that he can sleep peacefully through the night.
Would they care if he was wet or soiled?
How many times would they check?
I let him have his “tubby-time”…. Which for him is about an hour long – and where he loves to just sit in there and feel the sensation of the bubbles and hear the motor running from the jets; and when I get the water at just the right trickle coming out of the spout, he can last in there as long as he wants before the tub fills up.
Would that be allowed? Or would they force him to take a shower?
He is afraid of showers....
What rights and freedoms and luxuries would he have in one of those places?
How would I know that what I detailed out in his care plan, was being carried out?
My son is not interested in T.V. or Video Games or Movies, - during that time of the day, would someone take him outside to run or walk? Have a trampoline for him to jump on?
Or would they say they did, but didn't.
I wouldn't know. My son can't talk.
It takes all my time and energy to care for my son, and I consider it a priviledge. Ok maybe I feel less than priviledged some days, but I always consider it an honor and a duty to respect this individual human being that God has entrusted to my care.
Would someone making minimum wage consider it that? Feel that?
Would they be deterred from even thinking of abusing my son because of the arrest, charges, conviction, and prison time of those who have been found guilty of doing such things before them?
All I remember reading about, is the crime. Not what the punishment was.... if there was any.
Would they spend their free time like I do, learning new treatments to help him overcome some things medically that hinder him? Learning strategies to cope with his behavior issues he sometimes has; or would they just medicate him to subdue him?
And what could a state school or an institution do, along with their employees, - that they couldn’t do right here in my son’s home, or his community via home supports or group housing, - with the parents close by to observe?
And actually allowed to observe. Anywhere. Anytime.
No one is saying there is not a need for housing for individuals with disabilities who have no one to care for them and no where to live.
It’s a matter of where it’s needed.
No one is saying there will be loss of jobs.
Attendant care providers, nurses, therapists, - will always be needed.
It’s a matter of relocation of those jobs.
This morning, as I write this, the only thing that has changed in the opening quote, is this line:
…we cannot tolerate shocks, slaps, pinches, or any other obnoxious violation of dignity.
That has changed...
Changed to: “ we are still tolerating…. and it is now sexual abuse, punching, and death.”
Please join me in writing to the Governor, Lieutenant Governor, your representatives and senator, and the Commissioner of DADS, Addie Horn.
Share the opening quote with them, and the link to the full text of the essay below.
Ask them where we are now, as compared to then.
You may not agree with everything Lou Brown shares in the essay, but the basic principal is one I feel we can all support…
Please read it.....
In closing, remember this modified last line of that quote:
Let us, the advocates for our children or loved ones, be value based, unbending, tough, aggressive, assertive, graceful, compassionate, - but most of all – effective!
Will another 20 years go by before we get the “effective” part right?
Michelle M. Guppy
Article by Lou Brown
To view article, click on: http://www.tash.org/WWA/WWA_history.html
(Brandon Guppy, Mr. Incredible himself, pictured in this 'just for fun one day' thing I wrote during autism awareness month a few years back....)
The Autism Story: As told by Disney Movie Titles...
Lady and the Tramp
Bernadine Healy vs Julie Gerberding. Need I say more? It’s not ‘luck be a lady’, it’s truth and open-mindedness leading to being respected like a lady. And Bernadine Healy, you are a lady.
Beauty and the Beast
Jenny McCarthy versus any other actress or person who denies a link between autism and vaccinations or that autism is treatable for many, and reversible for some. Not a betting person, but for this WWF knock-down, my last dollar is on the beauty. (And trust me, I do only have a dollar)
The beast may be rich and powerful and have deep governmental roots, but have you heard what can come out of the mouth of that beauty??? I wouldn't take her on....
In Pinocchio, we spotlight some Pediatricians/Liars whose noses should be longer than Offit’s vaccine profits, er pay off’s, are deep. Those Pediatricians that tell moms of newly diagnosed children that there are no effective treatments, and that diets, supplements, and chelation are nothing more than quackery or voo-doo science at best. Traditional, aka closed-minded Pediatricians, you can stick your Pinocchio noses where the sun don’t shine. And hopefully rot there.
Only in Fantasia will it ever be written that the government was right about vaccine policy being safe and not corrupt. If it’s not ok for pregnant women to eat fish that might be contaminated with too much mercury, then it is not ok to inject it in an infant. If it’s not ok to take a weeks worth of medicine at once if you forgot to take it, then it’s not ok to inject “catch up” vaccinations or multiple vaccinations - all at once.
Dumbo… Who to ultimately honor with such a title! The line to get in this movie is long! I suppose that Offit, you would get this honor. But there are so many others who defend bad vaccine policy and profit from it at the same time….. Anyway, no other explanation needed. The title says it all.
Chicken Little… describes the AAP’s or CDC’s refusal to embrace independent collaboration on vaccine policy and safety, and ultimately reform. Their current plot/policy and stance fools no one and does nothing more than solidify the fact that their chicken poo goo that they call research – is really just that – chicken poo goo.
The Great Mouse Detective….. I have the unfortunate distaste of hearing from the great mouse detective herself on the Today Show occasionally. If it weren’t for getting to see Al Roker, I wouldn’t subject myself to that pain at all. But alas the great mouse herself, Pseudo-Science-Snyderman, proudly struts her small self in front of the camera to assure everyone that there is no link between autism and vaccines. Well pseudo-Snyderman, all I can say is, mainstream medicine has once again been lured by the cheese manufacturers. But, luckily, parents are getting smarter and can see through the smelley holes in the truth you profess, and more importantly, they know what to do with mice they don’t want in their house.
Ahhh, the Jungle Book. My favorite. Dr. Wakefield is our Tarzan. Swinging from state to state and across the ocean to speak the truth and even more importantly, to defend it. So many children would still be lost in the thick jungle of autism and leaky gut if it weren’t for him. This movie is a two thumbs up. Oh, to be Jane……
The Rescurers…. I love the quote from the doctor’s wife who said, “You broke them, now you fix them”. I don’t think my child is broken, but I welcome those doctors out there who are M.D.’s who are truly making a difference in the life of a child with autism. Who are putting their careers on the line and risking alienating themselves from their professional peers – to rescue children who were indeed harmed by “Do no harm”.
The Lion King…. Who could forget the scene where little Simba is up against those horrid hyena’s – and didn’t know that Mufasa was behind him. When Simba roared, it was laughed at, but when Mufasa roared, it was heard for miles and would be remembered always. Bernie Rimland was our Mufasa, and his roar will always echo…. So be afraid you nay-sayer hyena’s who profess that autism isn’t treatable and that vaccines are safe; - be very afraid. Because Mufasa lives on….
National Treasure, Book of Secrets…. Not only a movie to rent, something that is really locked up under close surveillance. No, not the Declaration of Independence, – but rather that vaccine safety research proof that the CDC and Vaccine Manufacturers base their lies on.
Iron Will… a real life reality show starring any parent who has a child with an Autism Spectrum Disorder. Title says it all. You can't elaborate on perfection.
Bedtime Stories… hopefully what the next generation will tell their kids, about what autism used to be….
Remember the Titans…. A documentary about all those heroes who have gone before and who have paved the way to where parents are today, and how much further ahead the parents of tomorrow will be. A tribute to all those whose lives and childhoods were taken away needlessly. They will be remembered, they were the titans.
The Incredibles…. Can’t type this one with a dry eye. The Incredibles are the children living with autism. Who day in and day out live with a disorder that they don’t get the luxury of taking a day off from. Those who have much to say, but haven’t found a way yet to say it. Those who overcome obstacles each and every day. They are the true super heroes. They are truly incredible.
To Captain Dave McCabe and Guy Hoover,
You asked for a testimonial about our experience with "Heart of Sailing", -- but I don't know if I can come up with a short enough one to use. I have thought about what our experience with "Heart of Sailing" has meant to me, to us as a family, to my son Brandon who has autism, - and it's more difficult than I thought it would be. And I am someone who writes inspirational stories, and I can't even find the words....
But I remember one time talking with a Grand-parent who was discouraged with society's reaction to his Grand-son, who due to his disability needed to be in a wheelchair. He was burdened by their cluelessness as to what it takes for to care for him. He was even more burdened by how those who stared at his Grand-son totally overlooked what a blessing that sweet child was. He said trying to explain to others about his Grand-son was: "Like trying to explain color to a person blind from birth...".
I remember being touched by how true that statement was.
Because you can't.
You can't explain to someone what it's like to have a child with a disability and all aspects of that, good or bad.
And I can't explain to you, how such a simple sailing trip, touched our lives so.
How do you explain feeling 'special' in an ordinary kind of way?
How do you explain how when you've NOT felt special in any way in many aspects, that you sorta lost hope that you COULD feel special? That you forgot HOW to feel special?
Even with 'disability benefits' from programs, you are discriminated against because you make too much, not enough, or you die waiting for your name to come up on a list!
So many times your child can only feel special and enjoy a program for children with disabilities, if they meet a certain criteria within that disability! You have to be toilet-trained, be a certain age, have only a certain disability, etc.
Who knew that having a disability was so discriminating in itself!
So, it's in the safety of our home, where we feel the most blessed, the most special. Outside those 4 walls, that is where society slams you with how 'different' you are. How 'different' your life is.
And how HARD life can be sometimes!
And as far as inclusion principles have come, people first language has evolved, accessible programs have expanded, -- for us many things remain the same.
People are still going to stare when our son hums and flaps his hands.
It's still not going to be thought 'normal' when our 15 year old licks the handle of the grocery cart.
It's still not going to be easy to go to the mall with all the over-stimulation and explain to someone in the food court why our son grabbed their drink and took a swig of it.
It's still not going to be stress-free for us to do those things anyway, despite it all.
So perhaps that's why we were so blessed by your program.
For once, our family was just like anyone else's.
For once, we were able to enjoy an experience typical families can experience all the time.
For once, we were included in a program - didn't matter what disability, no complicated forms to muddle through, no waiting list to put our name on, and no financial guidelines to be disqualified from.
For once, we were a part of society and didn't get stressed-out in the process! If we were to brave a sailing expedition on a typical charter sailboat, we would have to be prepared for well-meaning stares, and disciplinary glares. In that no-one would understand why we had to literally carry our son on the boat because the step up was 'weird' and 'scary' and 'different' to him. Someone would have probably thought about calling 911 because to the average on-looker, it would seem we were trying to kidnap the child as we had to literally drag him on the sailboat. Not to mention that we couldn't have even afforded a private sailboat to enjoy that experience alone, to avoid having other people on the sailboat that would just be too over-stimulating to our son.
And most importantly, for once we were around others, like you and Guy, and didn't feel judged, pitied, or weird!
We just felt like 'us'.
All together, all able to enjoy an ordinary experience as an ordinary family!
And we felt humbled.
Humbled that you both would give up your precious time, to allow us that experience. Not having a clue what that experience would mean to us! Not getting a thing in return except for all the gratitude in the world from us.
So much in our lives has been difficult - and that experience, that day, gave us Hope! It was our therapy! Our chance to step off the Autism roller-coaster for a breather!
I hope you can see in the picture below - how priceless that is to us. We have rolls and rolls of film of the typical blank stare of autism. We have precious few pictures like the one below, that truly captures our son, Brandon. And not his autism.
You cannot know how priceless that is.
Another of my favorite quotes is this:
"Living with a disability is difficult. Acknowledging this difficulty is not a defeat, but a hard-won accomplishment in learning to live a life that is not disabled. The difficulty for people with disabilities has two parts --- living our ordinary, but difficult lives, and changing structures, beliefs, and attitudes that prevent us from living ordinarily." Nancy Eiesland - author of "The Disabled God".
That is what you have done Captain Dave with the Heart of Sailing program. You have allowed our family, and our son with autism, to live that difficult life -- ordinarily for once. And through your program and those who are a part of it, you are changing structures, beliefs, and attitudes.
You both will forever be in our hearts.
The Guppy family
Todd, Michelle, Matthew, Brandon
January 5, 2010
A new year lies before me -
Cleansed and forgiven are my sins through you.
Gone, are last year’s disappointments,
Before me, new opportunities to pursue.
Always near to comfort me -
Covering me like early morning dew.
To warm me through days of hardship,
To draw me back when I’ve drifted from you.
To focus on blessings that are many -
To get through any hardships with you.
To live renewed and refreshed with an attitude,
That resolves to see all things bright and new.
~ ~ ~
Each New Year I try and have a new theme and scripture to hold on to in the coming months. As the parent of a child with a disability – most of my time is focused on caring for him, as well as my family; and so I need to start each new year renewed and refreshed - with a scripture to hold on to.
January is my “sabbatical” month in a sense. A time of reflection over the past year, and a time to focus on the year ahead. A time to think about and anticipate what God has in store for me, my child, and my family.
Perhaps one of the greatest lessons I have learned the hard way, is that as busy as life gets and as the demands on my time tug away at me, - I still have to find time for myself so that I can have the energy and inspiration to take care of everyone else! You know the old saying, “If mamma ain’t happy….”
So each year after the Christmas tree is back in the attic, and everything is back in it’s place from the hectic holiday season, I take time to just listen to what I feel God saying to me for the New Year. And this year my thoughts kept centering around “All things bright and new.”
So I looked up scripture with the words “new” and found the following favorites:
“I will give you a new heart and put a new spirit in you.”
“He put a new song in my mouth, a hymm of Praise to our God.”
2 Corinthians 5:17
“Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come.”
Those verses inspired me as I marked them in my Bible for those days in the coming months when I would most likely need a “new” perspective on things!
And as for the “bright,” – I kept recalling the brightness of the snow I remembered from my childhood. I was fortunate to have lived in states that actually had snow – and sometimes lots of it. And even though I now live in a state where most winters we have our air-conditioning on, and most folks here have never seen snow, - I still think of snow. Of waking up and looking out the window and seeing a fresh new layer of snow covering the yard.
Snow so bright that the glare from the sun shining down on it makes you have to squint!
In Isaiah it talks about God’s glory being brighter than the sun or moon – and I would further elaborate – the glare off the snow that I remember.
"Arise, shine, for your light has come, and the glory of the LORD rises upon you. See, darkness covers the earth and thick darkness is over the peoples, but the LORD rises upon you and his glory appears over you. Nations will come to your light, and kings to the brightness of your dawn."
I felt God saying to me that much like the old year has ended, so too should any sorrows I had left over from the past year. After all – my calendar for the new year was blank, so I too should start off the new year with a “clean slate” – a fresh, bright, new attitude for the year.
And so as I filed away that old calendar, I also resolved to do just that, file away any hurt or disappointment, and instead focus on the promise of Isaiah 60:19-21:
“The Lord will be your everlasting light, and your days of sorrow will end.”
For me, Isaiah 60 is about restoration, rebuilding, deliverance, and - “all things bright and new”. It’s about the dawning of a new day, a new year, and a new future where I allow God to illuminate my path, and my family’s path, in the year ahead.
It’s about embracing the brightness of the plans God has for us!
I am truly claiming this year and Isaiah 60, as my new dawn!
A new dawn of healing for my child, and as a new dawn of joy for my family.
As a young girl I would love to be the first one to make footprints in the snow – and on the way back – carefully follow in those same footsteps so as to not “mess up” the new snow….
As a Christian, wife, and mother, – my only New Year’s Resolution this year will be to follow in God’s footsteps so as to not “mess up” his plans for me by instead following in my own footsteps!
I want to simply focus my energy and prayers this year in allowing Him to illuminate my path so that I can fully realize the brightness of His glory!
And I think that if I can do that no matter what 2006 brings to my doorstep, - this will be a year of all things new, – and my future, my son’s, and my family’s, will be so bright – that indeed, we will all have to wear shades….
As in Psalm 40, I pray that you would put a new song in my mouth this year. A hymm of Praise for all that you have in store for me this year. Help me to position myself to truly hear and do your will. Instead of making resolutions that might never come to pass, help me to resolve to simply follow you. As in Isaiah, help me to see that you are my everlasting light and that your glory is upon me. When challenges come my way, give me the grace to not just endure them, but to rejoice in them knowing that your will is perfect whether I understand it or not. As I go through this New Year, instill in me a spirit of thanksgiving. Remind me to fill those blank pages of my calendar with praises and thankfulness for who you are and what you have done for me, my child, and my family.
In your name I pray,
~ ~ ~
Written my Michelle M. Guppy
Article first appeared in Winter issue of my "Life Lessons" Series through Special Education Today, A LifeWay magazine.
January 4, 2010
Acceptance is not submission; it is acknowledgment of the facts of a situation. Then deciding what you're going to do about it. -- Kathleen Casey Theisen
I never thought that when I saw that quote above, how true it would ring for me on this day.
January 4th, 2010.
My son's birthday.
He is 16 years old.
I can't comprehend that.
I look at the picture above of him running and I see a teenager. A normal, typical sixteen-year old young man.
A High Schooler who might secretly hide the Clearasil in his backpack to dry up the zits he doesn't want his girlfriend to see.
One who fights with his brother at home over who must do what chores; or who makes bets with him to get out of doing chores.....
One who bugs me incessantly on this day for me to take him to the Department of Public Safety, where the closest parking spot will be a block away, only to then stand in that endless line for endless hours waiting to get what will turn out to be a crappy picture taken for his very first Driver's License.
One who today, will cause his dad's car insurance to double yet again, with yet another teenage driver in the house.
Autism has robbed me of all the above.
And "Sweet Sixteen" is something very different for me on this day.
Something in all honesty I do admit, that is more bitter than sweet.
I've dreaded this day, for a couple days now.
I suppose it's worse for me because I have already had a "Sweet Sixteen" celebration in my house. The way one should be. My typical son Matthew consumed for a whole year starting at fifteen, by completing Driver's Ed and passing the test. Then anxiously counting down the day until sixteen when he could stand in that endless line to get that piece of paper that for him, somehow meant freedom.
A rite of passage.
To drive a real car, with a real engine, on a real road, all by himself.
No more toy cars for Matt.
But for Brandon...
As I write this, he is pushing a toy car on the kitchen floor, fascinated by the hum of the toy engine.
The rational side of my brain tells me all the right things to think on this day.
It tells me to think of it as sixteen years of joy, with the promise of more joy to come.
And I know that.
It tells me to think of the many accomplishments and victories, of which there have been many.
I know that too.
It tells me to think of how far we've come, not how far we still have to go.
It tells me to not dwell on what isn't because of Autism, but on what is, thanks to Brandon.
To be thankful that what he's taught Matthew by being his 'silent sibling' speaks much louder than any conspiratory comraderie they would conjour up, ever could.
It tells me to lean on God and on his word to get me through this. This what? What do you call the maddness of what this day represents to me? No matter. Call it what you want. Whatever it is, it just is.
And I know God is there for me, I know what His word says to me.
But you know?
Some days you just have to admit that you're pissed or sad, no matter how close to God you are, no matter how many scriptures you can recite.
My rational side, the 'good voice' so to speak, simply tells me what I already know...
What a blessing my son Brandon is.
But that's not the point of how I feel about today.
No, today is not a rational day at all.
It's a day that the irrational side of me and that other voice reminds me, that while for his self esteem I'm glad he doesn't realize what acne is or whether the Clearasil worked before lunch with his girlfriend - that he should be like every other sixteen year-old worrying about that.
That while having one teenage boy in the house with a girlfriend is enough, - I should have two of them with girlfriends.
That worrying about having one teenage driver on the road is more than any mother's heart should be put through, I should have a double heart-attack with two.
No, no, no, no.
On this day, rational thoughts do not prevail!
And I don't see that as all bad.
Nor do I see it as a pity party.
I see it as a day where I will simply have to face my giants.
Today I will acknowledge my true feelings about his "sweet sixteen" birthday, negative though they may be. I will not hide them, make excuses for them; nor will I apologize for having them when I know good and well that I shouldn't.
But seriously, how?
How do you see past the giant to celebrating the victory?
How do I look in my sweet child's endless brown eyes on this day with all my intelligence of knowing what this day should represent, and see anything but loss?
Anything but what could have been?
What should have been?
I've thought about that for a while now in writing this, and I have no answers.
Perhaps it's just "blind faith".
As if there were another kind.
And to me, faith is Mary.
I would love to meet her at Starbucks for a cup of coffee to talk about the loss of a milestone this day represents for me.
I could use an espresso shot of her kind of faith through difficult circumstances, and her unwavering trust in believing a higher purpose in all things.
Though two very different scenario's that I dare not compare, I would still love to know her thoughts as she watched her tortured son stagger down the path to his crucifixion on a cross. I would love the validation that perhaps she had my same dilema of today, at that time. Her rational side knowing that her son's life was cut short for a higher purpose. But her irrational side thinking how instead on that day, she might have wished she was watching her son happily walk down the aisle to the alter to take his fiance's hand in marriage.
But alas that coffee-talk cannot be, that Wedding Day for Jesus was not meant to be, so I must trust in God's purpose for this day that I cannot yet see.
And I must face my giant.
YOU SUCK TODAY.
And on this day as I do that, face my giant, my son's sweet sixteen birthday, ~~~ I win for no other reason, and have no other point to make, except that I was simply brave enough to face this day.
Still somewhat sane.
Saddness or anger may creep into my being now and then, like today, but it will not have the last word in this journey.
~ ~ ~
Acceptance is not submission; it is acknowledgment of the facts of a situation. Then deciding what you're going to do about it. -- Kathleen Casey Theisen
~ ~ ~
Today is January 4th, 2010.
It's Brandon's Birthday.
He is 16 years old.
At sixteen you celebrate.
You make a cake with candles.
And for sweet sixteen, you go to the Department of Public Safety where the only parking spot you can find is a block away, so you can stand in a forever-long line to get what will turn out to be a crappy picture taken for that piece of paper that proves you are you. A member of society. A Texas citizen who can legally drive.
So that's what we'll do.
We'll go there and get not a Driver's License, but a picture ID.
Except for us, we will get front row parking with our Disability Plates, and with his wheelchair-like stroller he needs to sit in at crowded places for sensory purposes, (and control purposes), we'll get a free pass to the front of the line, and we won't have to wait at all.
Ha ha ha all you typical folks who must wait in line...
Autism membership does have its priviledges........
For Brandon, who taught me how to face my giants, and win.