Step 30: Where do we go from here?

This is it!

The last day of April, National Autism Awareness month. The last day of this personal project that in many ways exceeded my expectations, but in many ways fell short of what I had hoped I could accomplish. I have to chuckle though, that's how "Life with Autism" sometimes rolls!

So... where do we go from here?

Back.

We go back to the drawing board.

We go back to basics.

We go back to the common sense we have allowed the government to take from us. And we ask ourselves as a society, as a nation, some very hard questions.  That even though God gave us the intelligence to create artificial immunity through vaccinations, is it really better than the natural immunity God programmed each of us with?  For those of us who are Christian mommies who believe in a perfect God, do we really think if he is indeed perfect, that he would create an infant who needs artificial immunity in the first place?  Do we really think that even if some vaccinations in the past were good, that more today are better?  It's debatable whether they were good in the past, and unquestionable that they are not good in the present nor will they be any better in the future. We question ourselves in that if we have the knowledge and technology to grow food faster with GMO's and create the perfect meat from cultured animal tissue, is that really what we want to do?  Do we really want to potentially sacrifice our children's health for someone's science experiment in doing something just because they could, not because it's needed?  For our convenience?  In my Cooking Light magazine there is a side-bar of "Food and Nutrition Trends of the Next 25 Years" which says "Tissue Culturing will yield healthier meat" and explains "The flavor, texture, and nutrition of conventional meat products harvested from slaughtered livestock are determined by the animal growth and development processes.  Liberated from such processes, production of livestock meat by tissue culture methods will enable a healthier nutritional profile and customization to suit individual consumer tastes."  I think the only thing we've been liberated from is our brains if we support that.  Another one is "Produce will grow very, very quickly" which is about being able to grow our fruit or vegetables overnight.  "It would have to be a genetically modified seed, unfortunately, but wouldn't it be cool to plant a seed, water it, and wake up to delicious produce the next day?"

No.  No, in fact it would not and where we go from here had best be realizing that.  Back to the basics of clean, healthy, organic living.  Living off the land in its time, not ours. 

If, that is, we care for our children's health more than our convenience.  Which I'm convinced that as a society who has allowed such toxins and poisons into our homes and foods, we don't care for our children's health more.  We care for progress more, no matter whose health it hurts.  We care for profits more, no matter whose health it costs.

We go back to not valuing a man's ability to play sports professionally more than valuing a person who cares for another human being that God created.  We ask ourselves if we really think that professional athletes should be paid more than a caregiver, a teacher, a soldier.  And before anyone answers that they best be someone wealthy enough to not ever need the care of anyone in a nursing home nor someone who would ever need the protection of a soldier, a police officer, or a firefighter.  And above all you best not be a woman who will have a child one day who might possibly develop autism and need anything from anyone.  And when you have that child one day and decide vaccinations are not your choice, you best have some bail money stored up because with the current trend of state's overriding a parent's right of choice, you won't have a choice to vaccinate or not. You'll be arrested if you don't.

As a Christian I have to believe in purpose for all things.  I do not for a moment think that God created autism.  I'm perplexed as to why he chose to allow it, but that's a sovereignty issue that my humanness does not allow me the capacity to comprehend.  But in that purpose of God's sovereignty, I have to think this generation of children, youth, and adults who have an autism spectrum disorder are our Nation's wake-up call.  Our Nation's last chance to get it right.  Our Nation's chance to go back to the basics of common sense where we should have never left in the first place. Before it's even more too late.

We must go back to before autism exploded to see what occurred during that time to see what we have done wrong.  Most of us know that answer, we're just waiting for the government to admit it; and as voting citizens of this nation, we must demand Congressional Hearings on Autism so they are forced to admit it. 

Click here to join the Canary Party to demand Congressional Hearings on Autism.

We have to look to this present 1 in 88 and face who we have harmed in the name of progress, profit, and politics. And we as a society must do all we can to make their now, their future, the best it can be despite what has been done to them.

We must learn from past vaccine and environmental mistakes and stop repeating them!

Lighting it up blue won't fix it.  Walking for it won't fix it.  Changing our values, attitudes, and beliefs will.  Going back to basics will.  A dining in home grown or home cooked instead of drive thru processed and poisoned way of life will.

Those 1 in 88 are indeed the canaries in this Nation's "more-and-faster-and-easier-is-better" coal mine.  This generation of children are growing up coughing, choking, and dying from the fumes of multiple vaccinations, GMO's, and environmental toxins.  I believe that with every fiber of my soul.  I know that God could have not allowed this epidemic, could stop it and reverse it.  But that he did allow it, and didn't stop it or reverse it, and is instead having faith that we will,  --  tells me that even he still has hope for us as a society, as a Nation.  That we will see what we've done, who we've done it to, stop it, and fix it.

Ahhhh... no matter the odds, I still have Hopeism in that.  It's what keeps this stark-raving-mad-laughing-lunatic-who-loves-her-Lord on the edge of crazy yet not too far from sane.  It's what keeps me Choosing Happy, Living Joyfully, Following Christ, and Wearing Camo.

Reliving my "Life with Autism" in the span of a month has been draining.  But it's been invigorating as well.  Again with the black and white that is autism, in how it's both good and bad, joyful and sorrowful.  Despite the worse days of autism, the stories of how Brandon has impacted others have been the greatest days of autism.  The stories of how others have viewed and been strengthened by our faith as they see it, when we have secretly thought that on the most maddening of days if Brandon turned on one more light switch or left one more faucet running or hummed incessantly for one more second - we would sell our soul to satan if he would in exchange make him stop -- will encourage us when we have more of those kinds of weekends.  Despite how maddening autism sometimes is, it is spiritual in how it has taught me about God.  Shown me who he is.  When you see the blunt of autism, you also at the same time can see the blessing in the child who has that autism.

We've had many "non-recoverables" in our home.  A term my husband used when he dried himself off after a shower with a towel he found out a bit too late, was one our dear son who has autism peed on.  After he dried his hair with it he noticed the smell then decided that was "non-recoverable" meaning it couldn't be cleaned off, so back in the shower he went.

Laughing about those many "non-recoverables" in our life with autism has kept us going instead of grinding us to a complete halt.  It's given us new perspectives on what a crisis truly is.  When typical people complain about a typical bad day, we know how when we have seizures and leaky gut on top of autism - how we just long for a day of plain ol' autism!  Let alone a "typical" child and typical challenges.

I've tried to be as real as I can possibly be when it comes to allowing you to walk these thirty steps in our shoes. I've tried to share how even in how very difficult life with autism is, how many "non-recoverables" we've had, that autism itself is full of recovery.  Hopeism.  Healing. My own son who is so very severely affected, has come such a long way.  Most of the healing for him has occurred in his teen years, a time when most say if they haven't made progress by then, there's no hope. 

Hogwash! 

Hopeism has no age limit! 

I hope I've encouraged a warrior mom on this journey that despite how hard it is, keep fighting the good fight to reclaim your child.  As you saw in the "Autism Mother's" video from a few days ago, you have an entire world of warriors fighting right beside you, there to help you. So keep pursuing, keep believing, keep defying, keep rallying and keep demanding.

Above all, keep laughing.

I know our family will despite the things about autism that aren't funny at all.

These thirty steps began long ago... sixteen years ago to be exact.  What began by losing a child to autism ended with gaining a new life, a new passion, a new perspective, a new voice and a new community of some of the most remarkable warrior moms, dads, advocates, physicians, and researchers one could ever know.

What milestones we've missed or might never meet, have been made up in the muchness of the very many life moments that have meant so very very much more.

Some days it's still so very hard to make sense of it all in this crazy, mad, wonderful life that I did not plan for.  I guess that's why there's Proverbs 16:9 in that "We can make our plans, but the LORD determines our steps."

I'm so very thankful that the Lord has been, and will be, with us each and every step of the way.

To slaying the Jabberwocky's of autism!

 

To Never Quitting!

To Hopeism!

HOOYAH!

Step 29: The Greatest Fears

I had hoped I could title this "The Greatest Fear" - as in singular.  But I can't.  I've settled for being thankful that among the many fears I have as a parent of an adult son who has autism and other medical conditions, that I only have a few greatest fears.

One greatest fear is that more and more people will only value a life before it's born rather than seeing their value and protecting their life after birth.  I see it each and every day, people wanting to pass laws protecting the unborn, sonogram laws, doing away with Planned Parenthood laws.  So many laws for that, yet not one law that forces a criminal justice system to enforce laws we already have that are broken.  People who have disabilities are abused, maimed, and murdered in state schools and institutions each and every day perhaps, yet but a fraction of those who are committing those horrendous acts are prosecuted, let alone tried and found guilty with a sentence longer than that of someone found guilty of abusing a dog.

Another greatest fear being that my son might end up in an institution (other than Harvard) one day.  That when I can no longer care for him and because I didn't win the lottery to fund private in-home care the rest of his life, that my only choice would be that.  What kind of society allows parents like me to have that constant worry?  What kind of society would pay for all the services in the world for someone in a state school or institution, but not fund a fraction of that cost to simply help them care for their loved one in their own home?

The reason I fear that for my son is because I know that with very few and far between exceptions, you get what you pay for.  And our society does not pay people enough to care for other people.  Our society pays absurd amounts for adults to throw a football and barely minimum wage for someone to care for another human being.  Even less to teach them.

What happens when a society follows that practice?  You get what my husband and I to this day, cannot talk about.  As strong and as brave as my husband is, he simply will not allow me to speak of the horrors of abuse in state schools or institutions to him.  Things that I can't stop myself from reading about because those things have happened to my friends whose children could very well be my Brandon.

I fear that because I know how much my son loves his freedom.  Though he needs structure, it needs to be structure that follows his choices, things he likes to do. Not the rigidity of a schedule that someone else determined for him based on what fits their needs and staffing, not his wants or desires.  I don't want him forced to take a shower that he's afraid of simply because a bathtub was too expensive or takes too much time.

I fear my son becoming what Roger was.  I'll never forget Roger, whose story I learned of in my Partners in Policymaking Class years ago. A person who through some circumstance ended up placed in a state school where the staff there thought he was too disabled to learn anything.  So they never taught him.  Until one day when one of the few and far between exceptions of a staff member decided Roger was worth teaching, that Roger could learn, that Roger could communicate with the help of technology.  For years Roger was left to sit in the confines of his room following a rigid schedule that focused on what they could do with the staffing they had, not on what Roger would want to do.  One day this new staff member took Roger outside and he typed on his communication board, the one she taught him how to use, these words:  The sky is blue. That's one of my greatest fears.  That one day Brandon will no longer be able to go outside when he wants, to see for himself that the sky is blue.

That he would lose the freedom he so loves. 

There's an episode of Dr. Quinn Medicine Woman called Birdman.  It was about how a highly educated professor who taught at a University but who was seen as a bit "different" ended up in an insane asylum.  For years he would look out the window and study birds.  Everything about them.  He studied how they could fly because he wanted to fly.  Perhaps he was put in that insane asylum because he taught his students that one day humans would fly as birds did.  A very insane thing to think, let alone say, way back then.  He managed to escape that insane asylum and crossed paths with Dr. Quinn whose family accepted him and his oddities.  Eventually it was found where he escaped from and that someone would be coming to take him back.  As harmless as he was, because he believed he was a bird he was seen as a danger.  As insane.  Someone to be locked up.  Watching that show was hard in that respect.  My son is often seen as that Birdman, with his oddities and mannerisms. People must at times think he's insane and belongs in an asylum. I love how Dr. Quinn explained his behavior... That perhaps he wasn't insane because he thought he could fly, but that by looking out the window each day and becoming a bird flying away, was the only way he could stay sane.

How many children, youth, and adults who have autism and who are placed in self-contained classrooms, state schools, or institutions do you think are standing by a window (if there even are any) looking out and imagining they are the Birdman flying away?

I would say all of them.

Those are my greatest fears.  That my son could lose the identity I worked so hard for him to have. That he ends up becoming who a staff member needs him to be, in a doped up, drugged up sit-down-and-watch-tv client rather than the happy-go-lucky boisterous always on the move person he is. That as one of the many "Roger's" of this world, my son will end up locked inside some building somewhere being cared for my someone who thinks he can't learn, let alone think he would actually like to go outside to see that the sky is blue.  That as a bird who loves his freedom to fly, someone will take away his wings, his ability to choose what, when, where, how.  And if you don't think these things happen today, you best watch this video:  Click here to watch "Forgotten Lives" video.

But what is my greatest fear?  Dying.  Because of this country's obsession with institutionalizing people they do not want to be burdened by. We leave them in the care of the mostly incompetent so that those who would be competent can have careers more edifying, meaningful and profitable.    No, this isn't in fact a feel-good step in this Autism Awareness journey, but it is a reality-check step.  For my typical son I don't have that fear of dying and leaving him behind.  He can speak for and care for himself. But because of my son who has a disability who can't, and the society we live in, especially the state I live in, Texas, which boasts of the most institutions in America, and the most abuse in them over any other, -- I very much do have that fear for my son who has autism, no matter how much Hopeism and faith I try to conquer it with. I know that probably is a direct contradiction to the faith I boast of and feel I have, which is why I suppose that I'm driven to daily draw closer to God - to help with that fear.

But no amount of faith in something better will change the facts of what is right now and what will be if we don't all take a stand in demanding something better.  What's that scripture?  "Faith without works?"  We have much work to do on behalf of the 1 in 88 who might not fully recover and who will need care and a home after their parents are gone.

Click here to read the U.S. Department of Justice report on Texas State Schools and Institutions.
In case you didn't click on that link just yet, here's the summary, and even if you did read it, the summary is worth reading again:  "We have concluded that numerous conditions and practices at the Facilities violate the constitutional and federal statutory rights of their residents. In particular, we find that the Facilities fail to provide their residents with adequate: (A) protection from harm; (B) training and associated behavioral and mental health services; (C) healthcare, including nutritional and physical management; (D) integrated supports and services and planning; and (E) discharge planning and placement in the most integrated setting.

I guess I'm a dreamer, I love classic movies and the inspirational quotes from them. I think that life can end as good as it sometimes does in the movies I love. I guess this day's step is one in which I hope to end like in the movie A Christmas Carol where the spirit is showing Scrooge things that would be if not changed. 

Scrooge and the spirit watch the Cratchit's enjoy their meal. Scrooge asks if Tiny Tim will live. The spirit claims he will die if these things remain unaltered. Then the spirit echoes Scrooge’s former words, saying if Tiny Tim is to die, he should do it and decrease the population. Scrooge feels ashamed of himself. The spirit tells Scrooge that he has no right to determine who shall live and who shall die. In the eyes of Heaven, he may be considered less worthy to live than those he condemns.

I hope society really lets that last line sink in because by allowing such practices for our children, youth, and adults with disabilities, you have condemned them in determining their freedoms should die.

To the 1 in 88 Tiny Tim's out there who need their future altered.

To the Hopeism that it will be.

Step 28: Who is this child with autism?

I always try really hard to remember that the true warrior in this battle of autism -- is the child who has autism.

He is the one who would rather flap the ribbon on the Christmas present rather than open it to play with the toy inside.

He is the one who feels pain and who bangs his head against the wall to try and make it go away or who bites his own hands in frustration because it never does go away.

He is the one would have to sit on a school bus going to school at three years old instead of going to play dates with others his age.

He is the one who couldn't stand to be touched, hugged, kissed; but yet who laughed when he fell against the corner of a wall and got a goose-egg.

He is the one who would spin around for hours on end, no doubt to try to escape the madness of the world around him.

He is the one people bully.

He is the one who could have been abused and I would never know it.

He is the one who could wander off and drown.

He is the one who must daily live with, overcome, and survive autism.

Not me.

As his parent, it is my duty to protect him, guide him, teach him, love him.  As a parent of that child who has autism, my role means more than any typical parent could ever comprehend a parental role being.  Now that my son is an adult who has autism, I'm not only his parent, but his guardian.  In essence, I took an oath to be his advocate.  His protector.  His guardian. I take that privilege perhaps even more seriously than I have taken being his parent, if that is possible.

But sometimes you can get so caught up in all of that guiding, teaching, protecting, advocating, that you can lose sight of who it is you are doing all of that for.  I remember when that reality hit me the first time, in what now seems like eons ago.  I was so busy rushing him to this doctor and to this therapy, that I totally forgot he was a little boy who might simply like to go to the park and play.  I remember sitting up so very late at night researching for him, that I had no time to be with him.  I remember one day thinking enough was enough.  That I had to find a better balance.  One that allowed me to do for him and be with him. One that allowed me to continue to change some things about who he had become (autistic) but one that took the time to simply understand who he was (my son).

I think society needs that same wake-up call.  Government surely does.  Insurance companies, agencies, educators, policymakers, and politicians especially. Society must understand that my son is not someone who doesn't belong because he's different. But rather someone who's difference is a difference that can make a difference.  If just given a chance!  Government must see that he's not a burden we gave birth to, but rather a human being whose health you have stolen with your vaccinations, your GMO's, and your environmental toxins.  Insurance companies deciding who gets treatments approved and who doesn't need to realize that he's not someone you can deny simply because his diagnosis is autism and not asthma. Agencies who are in existence solely to help him need to understand he's not something to regulate with more paperwork to put in a file.  He's someone you should be helping now instead of getting paid to merely put him on a list to help later.  When it's too late.  Educator's must realize they are mandated to teach, not babysit. Students who have autism can learn, and if they're not making progress with the way you're teaching them, it doesn't mean they can't learn, it means you're not teaching them in the way they can learn.  Policymakers & politicians are greatly confused in what their role is.  It's not to give someone only one choice on where their loved one with autism lives or receives the help they need by only funding state schools and institutions. It is to use that exact same amount of money to provide that home or that help where that person's caretakers feel is the most appropriate place to use it.  My son is not someone to be placed somewhere.  He's a person who wants to live somewhere. He's a person who wants the freedom of choice whether he has the capacity to make that choice for himself or not.  That's why I became his guardian, to ensure those freedoms for him.  He's not a budget item to be cut session after session.  And to candidates, he is most certainly not someone you don't have to pay attention to or represent simply because he can't give you anything or vote for you.  He is the person you most surely should represent first and foremost.

He is someone who loves to go on field trips.  Who is scared to death of showers.  Who loves to take long baths and play with the water as it comes out of the faucet.  He loves to laugh, jump on the trampoline, and he loves, loves, loves it when his daddy comes home from work and wrestles him.

He is someone who goes in his brothers room and wonders why he's not there to turn the stereo up loud so he can feel the vibration of the speakers.

He is a child of God, a boy who has brown eyes that light up when he laughs, my son who I love, an adult who has rights.  He loves to climb up as high as he can because I know in my heart he sees Angels and wants to be closer to God. 

He is someone who has definite likes and dislikes, who communicates in his way, to those to take the time to learn his language. 

He is someone who has hopes, fears, and dreams.

He is someone who deserves kindness, dignity, and respect.

He is not a crippled caterpillar, but rather a beautiful butterfly.

Why do I share all these things about who this child of mine with autism is? 
Because I think we've lost that focus in National Autism Awareness month.  Government Agencies and Autism organizations have made it about who they are and what they want, and not about who they are supposed to be serving and what they need.  Very little about this month that I have come across has been about the child with autism who is right here, right now.  If it were, I would not see money walk right out of the community it was raised in, more articles about more genetic testing for the future, and nothing on environmental studies or vaccine policy revisions to help now.  If it were, I would not have seen anything lit up blue, but rather more recreational programs in my community for my son to light up while participating in.  If it were, there would have been biomedical conferences in my medical center that target teaching physicians how to proactively treat patients who have autism.

If autism awareness month were about my son who has autism, all those letters from all those autism organizations would have been asking me what I needed right here and right now to help him.  Not asking me for money I don't have to help them in their own agenda's that might help my son years from now.  Or most likely, will not help him or anyone else - ever.

I'll leave you with a writing of mine that Catie MacKrell put into a you tube production that highlights just who it is this month is supposed to be about.

Click here to watch "God's Beautiful Butterfly"

I know the people in this video.  They are still here waiting.  They were young when this was made and now that they are older like my own son, little has changed in anyone understanding or helping to provide for what they need.

It's time we better understood who that person with autism is and what they need and want.

It's time to transform how we represent and serve those who have autism.

Only then can one start the process of doing.

Doing now.

Tick.

Tock.

Tick.

Tock...

Step 27: What makes a mom a Warrior Mom?

Autism Awareness month for me is a time to reflect on how far I've come in my own "Life with Autism" and all those who have helped me get to where I am.  My fellow warriors who daily fight a good fight against autism. 

Someone recently criticized the term "Warrior Mom" as in implying as a Christian it wasn't proper, it was too brusque. That I should instead stick to "Camo-Mom" as something less intimidating. I have to say I that I disagree and think that's why the epidemic of autism is where it is today.  Too many people want to sugar-coat it.  Camouflaging it by Lighting it up Blue is much easier and more politically correct than fighting whatever battle it takes to fight it, to defeat it. A camouflaged autism mom who never dares to stand up or speak out will never win the war on autism.  A camouflaged Christian who never dares to step outside their comfort zone will never win the battle of getting God back in our country and winning hearts for him. No, for that, we need people to call themselves Christian Warriors. Who will stand up, speak out, and powerfully pray in packs. Those who merely occupy a pew in church will never be effective in occupying our country, let alone heaven, with saved souls.

We need Christians raising their voice so loud it silences satan's.

We need Warrior Mom's raising their voice so loud that our government finally hears the silence of our children's.

To me what "Warrior Mom" means is found in the book by Richard "Mack" Machowicz called "Unleash the Warrior Within."

In the preface Mack says this: 
"True warriors understand this... Being a warrior is not about the act of fighting.  It's about the ability, courage, and commitment to end the war within oneself and not quit until the job is done.  Whether it's ending war within your home, your relationships, your neighborhood, your business, your country, or your world, warriors understand that they have to start from within themselves and build outward.  They know that by mastering the war within themselves, they can make the greatest difference in their world."
Click here to learn more about Mack & his book.

I like that.  It's amazing that he most likely doesn't know a thing about autism's impact on a family or anything at all about Warrior Mom's - yet what he wrote describes at least how I view myself as a warrior mom.  In being a Warrior-Mom who speaking for herself, wears Camouflage & Combat Boots.  Who learns strategies and gets inspiration from books written by people like Mack, Marcus Luttrell, -- Navy SEALS who are the best of the best and who know how to Never Quit.  You simply cannot surround yourself by people who have never boldly fought against anything, and expect to get from them strategies on how to win battles you simply must win!  You must instead learn a warrior's mentality from those who have used that to win their own wars, win your own, then mentor others in how to begin to fight and win their own.  Which is what the warrior mom's I have known have done for me, and it's what I seek to do for others. In doing that, we all collectively make a difference.  A great difference.  Huge.  I don't think any of that means I want to be seen as a bad-ass.  I do strive to find that balance of grace and gumption.  But make no mistake, when Madea needs to be unleashed, she will be unleashed.... 

All of the things shared below in a writing from many years back - describe how "Warrior Mom's" have had to look within themselves to conquer, so that they could then conquer all they must in the name of autism.  The courage, the commitment, the mentality that you are "Not Dead" and thus "Can't Quit" until the job is done.  We have had to start with ourselves in finding our own voice before we could ever be the voice of our child.  And by mastering that war within ourselves, we have made the greatest difference in our child's world.  I just love that. Thank you Mack and your "NDCQ" mentality!

A long while back, there was an opportunity for some Houston moms to participate in a photo shoot for the 'Autism Mother's' project in conjunction with Autism File magazine and the Autism One Conference.  They wanted pictures of Warrior Mom's who are fighting for their kids with autism.... Warrior Mom's who are making a difference in the war on autism.  So, 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 the many things that make a mom, a warrior mom... And I came up with this 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, trying to figure out what is wrong with your precious child --  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 received a diagnosis when you knew something was not right with your child but you didn't know what that was - 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 something like 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 either by yourself or with recruits, 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.

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 yet find time to spend in 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 you are called to lead support groups and organizations and do, 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 after 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 damn 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.  You just have to be a mom of a child with autism, or any other disability, and love them and believe in them and do the best you can for them.... Not the best anyone else can do, but the best YOU can do.

With autism numbers now at 1 in 88, we need more Warrior Mom's than ever fighting the war on autism.  We don't need them camouflaged to fit in and not cause a ruckus, we need them hoopin' & hollerin' to anyone who will listen.  And when we're told in reply that "Vaccinations are safe and do not cause autism" and other such false rubbish, we need to remember the words of Victoria Beck who said long ago, "Even if a million people believe in a stupid idea, it's still a stupid idea." 

And on days when I just want to quit, I have to remember this quote: "When fighting a gorilla, you don't stop when you're tired, you stop when the gorilla's tired."

That's the kind of warrior mom I want to be.  One who conquers fears.  One who's not stopped by stupid. One who is not dead and so can't quit.  One who was outnumbered by autism and ambushed by it on all sides, yet who hung on, never quit, and won.

I don't want to be who Shelley Reynolds was referring to in her Facebook status when she wrote, "Everyone's fussing, no one's fixing."

We must unite stronger than ever before and get to fixing.
1 in 88....and counting....are counting on us.

Please take a few moments to watch this powerful video of fellow Warrior Mom's:
Autism Mother's: The Final Cut

I cannot express what a privilege it is to be among such women, many of whom I have met.  Many more who I know only through the internet.  Many I will never know let alone meet.  Yet we're all connected.  All fighting the same fight for our children.  All with the same mentality that we will never quit until we win.  And because of that I know that someday, we will win.  Someday soon.

HOOYAH!

Step 26: From a Pastor's Perspective.

My observation of all the Guppy family, throughout the time I've known them, is that autism has had this effect on their family:  it proved that their faith in God was genuine  and continues to make their faith stronger.  

I always say that faith is real when it gets us through difficult times. Some people would be angry and allow this condition to make them hate God and run from Him.  They seem to love Him more as they see autism as a window of opportunity to discover the uniqueness of Brandon from a vantage point (God's), that we rarely take the time to discover.  They believe that God reveals Himself through Brandon in ways that nobody else would ever see.  And they know that Brandon has a window to heaven that non-autistic people rarely experience. 

It would be putting it mildly to say that autism brings their family a great deal of frustration, heartache and grief.  Most of us couldn't even begin to comprehend the depth of hurt and pain autism brings to a parent's heart.  That has been very real to them.  But something bigger and more powerful than autism has also been real to them also - their faith that has revealed a spirit of perseverance that is empowered by God Himself.  In the Bible, James made this statement:  "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." (James 1:2-3)  Parents of children who have autism have their faith tested daily.  And every day, they discover the reality of God's presence like the Apostle Paul knew when he said, "But the Lord stood at my side and gave me strength..."  (2 Tim. 4:17)  Autism, as debilitating as it can be, hasn't made them weak and defeated.  It has strengthened their faith, hope and love as they rely daily on God to sustain them. 


          Written by Pastor Bryan Donahoo
                Graceview Baptist Church
The Joy Ministry of Graceview Baptist Church


(Michelle adding this)
Poem from Miss Pam, a former volunteer in the Joy Ministry who was very touched by Brandon...

When Brandon Laughs

When Brandon laughs
The world stops turning
My heart stops beating
I don't even breathe
I just listen and smile
Happy he's happy
And thank the good Lord above
For sending this special child

When Brandon laughs
My spirit soars
I know God's alive
And Jesus is here
And love is all that matters
I watch him leap with joy
And just for a moment
The evil in my world disappears

When Brandon laughs
I just want to make things turn
Because Brandon likes things that go 'round
So I make the wheels spin
Over and over, again and again
And watch his eyes dance
His delight is ours to share
And we should NEVER miss that chance

Step 25: A Look in the Eye

Click here to buy "Feathers from Heaven" by Denise Briley.

I have known Brandon since he was about six years old. He came to Graceview certainly by no accident. My life was changed in so many ways by this young boy as he introduced me to so many situations that I had never faced in my life and as a leader in our Special Needs Ministry.

Most of my interactions happened with Brandon on Sunday mornings when I would care for him along with others on our JOY Ministry team. Brandon was one of the first children with Autism who taught me how to run fast! It would seem to bring him such delight to see if Ms. Denise could catch him running through the halls of our church. It was because of Brandon and children like him that caused us to change the dress code for Sunday mornings at church and upgrade to a great pair of running shoes!

But one of the most important things Brandon taught me was how to truly care for him and needs he had. There was not a long line of folks who often signed up for diaper changing or bathroom duties, and in a special needs ministry that's a wise thing. We always protected our children and adults who needed this type of care. However, as Brandon grew and grew and grew into a fine young man. He also grew taller than me! And yet, some of his needs never changed. He still needed to be changed or assisted in the bathroom. I think he challenged me to my "tag line" as a diaper changer for Jesus" as if to somehow say without being able to speak a word aloud "Okay, Ms. Denise, let's see you change this guy"! But time after time, I did it willingly.

It was one particular Sunday, I remember being in a hurry, checking the to do's off the ministry list, that Brandon needed assistance and he needed to be changed. He seemed almost agitated that it was me that day who was the one chosen. But I recall as I knelt down and removed his shoes, then the rest of his items, I spoke to him saying "Buddy I know you just tolerate Ms Denise don't you" he reached down and picked up my chin and looked me directly in the eyes. He never spoke, he couldn't, yet in his Brandon language, he moaned and glared deep within my soul as if to say, Thank You. I remember saying back to him, "Brandon, it's my honor sweet boy, my honor". It truly took my breath away! That moment it felt as if God were in the room.

My eyes tear up right now as I write about him, this sweet young man, watching him grow up, knowing that he has a direct line to our Lord Jesus. I will never forget that day, or any day spent with Brandon and others with Autism who are often trapped inside a mind that we often don't understand. Oh how I pray for others who care for children and adults like Brandon. For them to be gentle kind people who will slow down and take the time to change a diaper, wipe a tear, listen to their heartsong. God is using these children in huge ways ... to change us perhaps instead of us changing them. I am thankful Brandon Guppy changed my life, my heart! I am thankful for his family and their trust they had in our ministry to truly care for their child. I'll take a look in the eye from him any day!

Written by Denise Briley
aka "The JOY Lady"
TheJOYLady@msn.com
http://denisebriley.com/



Poem from Miss Pam, a former volunteer in the Joy Ministry who was very touched by Brandon...

Are You Listening?

Are you listening
Can you hear this young heart sing
Not with words and voice as you or me
But spirit songs from deep within
Maybe life's not easy for this child
But his soul is alive with love and light
And he's happy to be here with you and I
His joy is pure, his love is real
You just have to listen
With the heart Jesus gave you
To hear Brandon's song of life revealed

Step 24: A Church to call home.

Matthew 19:13-15
Then little children were brought to Jesus for him to place his hands on them and pray for them. But the disciples rebuked those who brought them. Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” When he had placed his hands on them, he went on from there.

~

I would further elaborate that scripture to include Jesus saying, “Let all the little children come to me, and do not hinder them….”

I am the parent of a child who has autism. Brandon is non-verbal and is developmentally delayed. He is a blessing in my life, but until finding Graceview Baptist Church and their JOY Ministry – a disability ministry for children, youth, and adults, - my family seemed to be the only ones who thought of him as a blessing. Much like many other parents in the disability community have learned, we quickly learned that society is still not very ‘accepting’ of the differences people have.  And… gasp… even the church!  Whether it be race, religion, or disability, – there are still barriers to be broken down and comfort zones to step out from. I don’t mean that in a negative way – but rather in a way that reflects the “fear of the unknown" and how that must be conquered.

Way back before living in Texas as we do now, as new parents living in Oklahoma, my husband and I considered ourselves “strong” Christians. We loved the Lord deeply and enjoyed being part of a church family in our town. We had two young brown-eyed boys. Life was going well.

And then due to my husband’s job, we moved to Texas.

We found ourselves in a new state with no family or friends, --and no church home. It was also during this time when our youngest son was diagnosed with autism, which further isolated us and necessitated for us to find a church home for the prayers and support of other believers!

When our lives calmed down from those initial challenges we were facing, we did visit various churches. We felt like Goldilocks and the three bears in a story that at first had no fairytale ending.  At one church where we felt welcome and had found a class that seemed right for us to be a part of -- when we asked if we could join them we were told that they were at their "friendship max" and we should find another class to join instead. At another church we were welcomed, the Pastor there even bought us a book about autism which I'll never forget, but the church was simply too far away.  At other churches we felt a clear vibe that our son with autism was simply not welcome, they had no way to meet his needs nor anyone willing to try.  “Tag-Teaming” got old, so we eventually just stayed home. At least that was something we could do together!

One day by chance, a friend mentioned that she heard of a church in the area that provided a free respite night for people in the community who have special needs children. I thought, “Could it be true?” The words “free” and “respite” in the same sentence? So I called the number. I think my internal conversation went something like, "Do I care what kind of church this is? I'm Christian, what if it's a Buddhist church?" But then in sheer desperation to take someone up on their offer, I decided I didn't care what kind of church!  If it was a church, it meant they had to be good people, right?  The lady on the other end of the phone asked which month we would attend, I replied, "All of them!"  We brought our son to the church and then left to go enjoy our first night out in many, many months. Now mind you, it had been so long since we had a night to ourselves, that we didn’t know what to do! I'll never forget how we drove down the street to the Home Depot parking lot and sat there in our car trying to decide what to do. Besides, we were sure that they would be calling us any moment to ask us to pick up our son because he was too much for them to handle. But they never called. And eventually we decided on a first dinner out in months.

Later, when we went into the church to pick up our son (ok fine, we actually came back early and snuck in the church sure to find him locked in some closet or being sacrificed to some god they worshiped! Trusting others with our son was not our strong point by that time.) we found him in the church’s gym playing on the phone. A man was standing beside our son, patiently handing the phone back and forth to my son, (who had a slight obsession with phones). My husband and I stood there in awe and just watched. It overwhelmed us to see the various church members playing with children of all disabilities as if it was something they’ve always done!  No torturing, no being locked in a closet, no sacrificing or exorcisms!  Just laughter, joy, dignity, respect, and care.

The man playing with our son we later learned, was the Pastor. That changed our lives. That a “Pastor” was humble enough to spend his Friday night playing with my son truly gave us hope that maybe, just maybe, we had found a place to call our church home.

And indeed we did.

Over the next several months as our son attended Sunday School through the JOY Ministry, we witnessed the walls of disability being broken down by the brave church members who would volunteer each week. Church members who had no specialized training in working with children with disabilities – except for a love for God’s children and a humble desire to serve. They truly lived out the scripture that says, “Perfect love casts out all fear.” I remember in particular one big ole tough truck driving Texan named Vernon who would squeeze into a little bitty Little Tikes playhouse with my son to play hide and seek with him.

If we were not already Christians – the simple act of love and acceptance in those volunteers being the “hands and feet” of Jesus would have hooked us! More than any sermon we heard over that first year – just knowing that we found a church for us, for Brandon, was enough to make my husband and I cry tears of joy each Sunday as we sat together in church.

I can see where some churches would have a fear of starting such a ministry. Perhaps they see the great need of a family who has a child with a disability, and aren’t quite sure if they can do anything to help. But when we were searching for a church for Brandon, we didn’t want anything but to be loved and accepted and have a place to fellowship together with other believers. Anything else was icing on the cake! I didn’t want to find a church that could heal my child – I simply wanted to belong to a church so that my heart that was broken by autism would be healed. Refreshed. Revived.

It has been many years since we’ve found that church for Brandon. Even today, after over a decade of being members of Graceview Baptist Church – we still appreciate it as if it were those first days of sitting in that front row soaking up the blessing of worshiping in God’s house with other believers.  I have to remind myself of that when I let things get too out of perspective, when I fall into the worldly trap as I have unfortunately done a time or two in finding more wrong with churches in general than right. When that happens, I simply have to remember that there was a time we couldn't even go to church.  And now we can.  No matter what we may feel our church or any church does wrong, we know that by doing all they can in making their church a church our family could call home, --- was right.  And that is what counts.

There are many things in life that my son does not know. But each Sunday as we pull into the church parking lot – he knows where we are, he knows where his class is, and he knows that when he gets there he’s gonna get lotsa hugs and he’s gonna learn about that man called Jesus...

Actually not... 

He doesn't learn about him, he experiences him through the volunteers who faithfully serve in the disability ministry.

I think children, youth, and adult Sunday School classes should adopt field trips as part of their lessons.  I would bet that spending a week or two in a class around children, youth, and adults who have disabilities would teach them the best Sunday School lesson they ever experienced.  One they would truly never forget.

Those volunteers will never, ever, ever, ever know just how truly thankful we are to them.  There are simply no words to convey that deep a gratitude for how our church welcomes who society often rejects.

I can't think of a better way to close this step of our journey than with a Miss Millie Bass quote as a long-time volunteer in the JOY Ministry of Graceview:

"They teach me more about God than I'll ever be able to teach them."

And a Miss Pam poem... Miss Pam is a former volunteer in the Joy Ministry who was very deeply touched by serving Brandon.

Brandon's Light

Brandon's light shines strong and bright
Warming hearts to God's delight
Brown eyes that smile with love received
Assure me he's there and I'm relieved
The questioning wonder in that gaze
His eyes on mine, I give God praise
Please let me know what to do or say
To make this day his best of days
His hug is more than I deserve
But thank you, God, for this chance to serve
Just help him feel your love thru me
Send peace within, clear thoughts, and glee
Please let my touch soothe a restless spirit
This treasured child, your blessing merits
Brandon's light shines strong and bright
In Jesus' arms, he fights the good fight

Prologue to the next few steps...

Faith is very important to me, and the next few steps of this "Thirty Steps in our Shoes" journey will be centered on how we have come to find a disability ministry in church so that we could once again be a part of our faith community, as a family, with our son who has autism.

After that is a poignant writing from the woman who created that JOY Ministry, Denise Briley, who most in this area know best as "The JOY Lady".  She will share how our son has touched her in serving him.  I know that you will be moved, I read it a dozen times so far and have cried bittersweet tears each time at just how blessed we were to have her in our sons life for that season.  I don't even have the words to describe what a blessing she was....at just how "Hands & Feet" of Jesus her servant-hood to my son was.  How she related the most menial task to doing it unto the Messiah.

Once again I have to say that so many churches seem to be afraid of opening their doors to the disability community, afraid that they can't meet needs or that if they pray for those children, youth, & adults and they aren't healed, that somehow people will lose their faith in that churches "faithfulness."

But that's not the case at all.  Parents don't want to bring their child to your church for any other reason than to be welcomed, accepted, loved, part of a family.  They want someone to simply care enough for their child to include them in a Sunday School class.  To keep them safe while they are in worship service.  Not fix them, not heal them, not teach them all they need to know.  Simply to love them. 

In our story I share how in the midst of a society who knows my son only by his medicaid number, his insurance code, his school diagnosis, -- we found a church that simply knows him as Brandon, a child of God.

In Denise's story she shares how she loved on my son as if he were her own and how she served him as if serving the Savior.

In the Pastors perspective, he shares how he has been inspired by the faith of those parents like me, who truly know how to persevere through life's trials.  In his church are many families like mine who did not go there looking for handouts, but a place to belong.  And in finding that, have gone on to serve in that church.  There are Deacon's, choir members, computer fixers, ministry leaders, -- many who have come to that church because of their child who has a disability and who have later become very active, integral members of that church. 

With this little "intro" piece, along with the praise of how our church has opened it's doors and broken down barriers and stepped out of comfort zones -- I would like to issue a challenge.

Churches, church leaders, -- you have a responsibility to your community to serve all people in your community.  I can still feel the sting of a church Pastor answering me when I asked about any plans for a disability ministry so we could attend there with his response of, "We don't feel called to do that at this time."

Nothing is further from the truth and I know God wept at his remark.  If you have anyone in your community who would like to attend your church, serving them is your priority.  It should be in your plans.

Churches who have mission budgets where a percentage goes overseas, half of that must be spent in working with local disability organizations who have a population to serve but who simply need a place to serve them in.  They are out there soaking wet in trying their hardest to help those who must weather the storms, the least you can do is partner with them in providing the occasional shelter.  Of respite programs, day programs, etc.

Organizations like Desperate for Respite want to serve families, but they need a place where they can on a Saturday so that the parents can have a few hours respite.  They need a place for a few hours during the day, during the week, for day programs when school is not in session.

It is not up to government to fix a communities problem. They quite frankly suck at it when they do try.  It is up to communities.  And if the church of today is taking it's role seriously as an integral part of the community, they will start doing a better job of partnering with all who are in those communities in reaching and serving people for Christ. 

What better outreach than to invite others in?

I can already hear many excuses... the cost... the liability.... the disruption...

What is the cost of standing before God one day and him asking why you turned away one of his children and thus a family?  What is it that the Bible teaches?  To live by faith or be stopped by fear?  You can't not do because of what might happen in doing. You must forge ahead in faith, doing all you can to ensure safety, and then simply trust God to do what you can't in preventing lawsuits.

Disruption...  who would you rather have in your congregation, a stoic, tight-lipped unmoved perfect Christian who won't sing because they don't like the music -- or an unhindered, free, moved by the Holy Spirit imperfect child praising loudly and off-key his or her Savior?  I would bet that if you polled your choir members who must look out in the congregation at both sets of people and both sets of expressions, -- you would have a unanimous answer.

Lastly, I would encourage any church leader coming across this to contact Denise Briley.  It is her life's mission, her hearts passion, for every church to have a disability ministry.  She will go to your church, tell you how, show you how, train you how.
Click here for Denise Briley website
         TheJOYLady@msn.com

Step 23: The Mistreatment of Autism.

I would have never, ever thought before autism, that I would have such disdain for doctors or the pharmaceutical industry.  Before autism came into my life, I actually wanted to be a doctor.  When I realized that may have been a bit out of my financial and mathematical league, I wanted to instead be a Pharmacist.  But that proved to be even further out of my league simply because in Organic Chemistry I couldn't get past enantiomers and being able to visualize them for tests!  But I loved medicine and pharmacy nonetheless.  I study it every chance I get and read about it when I have spare moments to read.

So it behooves me how since my son was diagnosed with autism, it has been most everyone but doctors or pharmacists who have helped me help my son, with few exceptions.

I guess I'm glad I never became a doctor if that would mean I would forever be closed-minded.  I'm glad I'm not a Pharmacist pushing drugs as if they're candy.  I'm glad I've been able to do what doctor's can't any longer:  Practice Medicine.  Not publish about it, not make money off of it, not meet the paperwork guidelines of it.  Just simply take the time to practice it.  Problem-solve for it.  Things doctors cannot do any longer.  I'm glad the Pharmacist in me is one who looks to nature and nutrition to heal, and not drugs.

I remember my first run-in with the medical malpractice that is autism.  My Pediatrician simply said that my son has autism and that I should go home and love him, there were no treatments and he would end up in an institution one day.  I guess I should have been thankful that I was simply told there was nothing to do about it, not that I caused it as mother's before me were told.

Funny how there was no good to be found in autism treatment back then as there is now.  You were simply thankful for bad, not the ugly of the generation before.

This child that my Pediatrician had no treatment for was my son who at one year of age was smiling and wearing a hat, and who by two years of age could not stand for anything to touch his head.  He lost language and preferred to be alone in his room banging his head relentlessly against the wall.  Any doctor I took him to, merely prescribed drugs to counter those behaviors.  Not one doctor actually looked further or did tests to see what might be causing those behaviors.

By then the internet was exploding with autism information and autism "quackery" in alternative approaches to simply drugging a child to death.  Pediatricians could not and did not even try to take the time to keep up with what was new, with what was actually helping these children live a better life.  When I would ask my Pediatrician about "secretin" "chelation" or "gluten-free-casein-free diets" I was told those things were quackery.

But I researched those approaches and in my mind I could rationalize them and found a way to try them.  And they worked.

What he called quackery turned out to be treatments that helped my son.  When he said he couldn't help me because of his "Do No Harm" oath, he never understood how by doing nothing he was actually doing my son the most harm.

Fear is the worst kind of medical malpractice.  Fearing something new, something unknown. Being so caught up in the business of medicine that you forget how to even practice it.

Doing nothing for autism is doing the worst kind of harm.  To not understand what an abnormal test result means is one thing. But to write it off as simply "autism" and do nothing further because you don't know what to do, is doing the most harm.  I know that because for the decade my son suffered from chronic diarrhea I had to live through that mentality of "If we don't know what's wrong, we'll just ignore it."

It was one of those few exceptions in physicians who actually took the time to properly diagnose and treat my son to the point where now he is healed in a period of two years of that chronic diarrhea he suffered from for ten years.

I don't know if mainstream medicine will ever get that, and that is what haunts me about all these 1 in 88 parents who are taking their children to traditional medical centers where they are given drug after drug to mask behavior after behavior.

Everything that has made the most difference in my son has been from alternative medicine, non-traditional practices, or quackery -- whatever you want to call it.

That my son doesn't bang his head anymore is not because of Clonidine, Risperadol, or anything else.  It's because his stomach doesn't hurt anymore because we have used the GFCF diet to aleviate allergic reactions that were causing that behavior.

That my son can now focus and learn, is not because of Adderal or Ritalin, but because of nutritional supplements and digestive enzymes that allow him to absorb the nutrients so his brain is no longer starved and in a fog.

That my son understands how to be a part of his surroundings in an appropriate manner is not because I just "took him home and loved him then put him in an institution" but because I sought out applied behavior therapists to help me help him.  To teach him in the way he can learn. To be consistent so that he is not further confused or frustrated.

Despite how much further my son has to go, I am so amazed at how far he's come! 

He is happy.
He is for the most part, pain free.
Except for seizure medication, he is drug free.
He is learning, growing, fitting-in, healthy, healing, and thriving.

Isn't that what medicine is all about?

I've never been more thankful to parents and forward thinking (yet few) physicians who have helped us, not harmed us.

I've never been more ashamed at the medical & pharmaceutical community who collectively continue the malpractice of autism and who in doing nothing but write a prescription, do the most harm.

Step 22: "Letter to Society" on how worth should be defined.

I thought it was thunder rumbling in those late hours of the night…  The calm, peaceful thunder that keeps you slightly awake, but yet relaxed enough to still rest, and sleep. 

But when the wee hours of the morning came, that thunder became not so peaceful.  Clanging and banging, but not in the rhythmic smooth way that thunder is.   That’s when I knew it wasn’t thunder.  It must be my son.  He’s up again.   I tried to ignore the sounds, thinking they would stop.  I was so tired….   Weeks in the summer when school is out can seem like  months when you cannot find attendant care.   But,  the mommy alarm in me wouldn’t let me ignore it for too long…  What if he’s wet… dirty….  hurt.  Then, as I lay there longer still, I became angry.  Why me.  Why again.   Why not wait and see if my husband gets up to check….

That made me angrier.  Knowing that really, even though my husband does his share,  I should get up and do all that needs to be done, because my husband has an important job to go to early in the morning.  He has responsibilities, meetings.  A paycheck to earn.  He must be fresh to do a good job, so he can keep his job.  Me, I don’t have a job, at least not one I get paid to do or can get fired from.  I stay home and care for my son and my family.  I don’t have to clock in.  I don't even have to get  dressed. 

And apparantely, I don’t have to sleep either.

So it was with that anger, (and perhaps a bit of self-pity), that I trudged upstairs to my son’s bedroom to see why he was awake.  I didn’t need to turn on lights, I could follow the banging and clanging of toys being thrown, a bed being jumped on.  And by the aroma that met me when I opened the door, I didn’t need lights to tell me the reason why my son was up clanging and banging.

So in the dark I changed my son so I wouldn't disturb the rest of the family.  I perhaps grumbled too loud as I tried to maneuver a diaper on and off in the dark.  I perhaps huffed and puffed more than necessary.   And when diapers were changed, clothes changed, and sheets were changed, and he went back to banging and clanging, I know that I was beyond frustrated when I said, “Go to bed!”

I’m not sure when he finally did go back to bed, but the next morning at 9:30am when I was to pick up my other son from swim practice, he was still sound asleep.  He looked so peaceful, so sweet.  Nothing like what I heard just a few hours earlier.  The guilt was quite enormous as I recalled what I was thinking about him in having to be up most of the night because of him.  I hated to wake him up, but knew I couldn’t leave him to sleep while I went.  So I woke him.  Once downstairs he was confused as to why he was turning to go outside to the car, instead of in my bedroom to the tub, his normal routine when he wakes up.

As I drove to the pool, I was now mad at myself, and not him.  Mad that I was mad about having to get up at night.  Mad about being tired all morning; and even madder that I had no one I could call to stay with him when I have to leave – or just to give me a break now and then.  I was mad that my back still hurt after two weeks of pain.   I guess a decade of bending and changing and chasing and dressing had started to take its toll.  Along with nearing forty, adding ten extra pounds; not to mention the lack of exercise because of taking no time for myself, even when I have it to take.   Too many other more important things to do…blah, blah, blah.

Then I happened to look in the mirror … Not the rear view mirror, but the special mirror I have attached to my rear view mirror.  The one that allows me to watch my son like a hawk while I'm driving.  So I can see and hopefully dodge a drink he has launched my way.  So I can see when he’s escaped from his seat belt and can pull over before he gets to the front seat and grabs the wheel.

What I saw in that mirror humbled me. 

I saw a little boy with blonde hair, sleepy eyes, and disheveled hair.   I saw my child in pajama bottoms that were inside out and backwards because I had hastily dressed him in the dark in the middle of the night.  I saw a man, with a man’s body, in a sleeveless t-shirt.  A man I admired and who was worthy and deserving of my respect.  I saw a child who tries so hard to navigate a world he doesn't understand, and that doesn't understand him.

I saw my child who could not talk and who has autism, sitting there as pure and vulnerable and as sweet and as innocent as a human being could possibly be.

And I saw the real reason for my anger.

It wasn’t the little boy in the back of the van sweetly grinning and swaying his head to the beat as a song he likes came on.  It wasn’t the little boy who couldn’t sleep last night because he was wet.

It was society. 

It was how society had slowly eroded my sense of self worth into thinking that it was a burden to care for or clean up after someone else.  That the job of doing that, wasn’t worthy of respect or an honest wage.  It was those subtle messages I am exposed to each and every day, that say that to be worthy, you have to be beautiful, perfect, smart, rich.   I am none of those things in the world’s eyes.  It was those messages I am exposed to everyday that say that I must be self-sufficient and have a career.  A title.  A degree.  The more initials after my name, the more important I become and the more pay I earn.   I have neither, and get paid nothing.  So what does all that make me, or the job I do at home?

It was those messages that if you do have some sort of specialized training or position, that you have to do something the world deems worthy with it.   I did go through a policymaking class that trains you how to be a professional advocate.  I am a part of an important state agency council.  But am burdened that because I have no help in caring for my son, that the training and position is going to waste because I am not able to go out in the world and put that training to use.  All I can do is stay home and feed, change, and clean up after.  No traveling to important places to work on important policies to help pass important laws.  No, the most important thing I do each day is to remember to lock all the doors in my house so my child doesn’t run away or flood the bathrooms.

And it was that knowledge that had built up, that made me feel the angry way I did in the middle of the night as I changed yet another diaper, yet another set of pajamas, and yet another set of sheets; in caring for my son.  It was that knowledge that had built up that made me wonder if that is all I would ever get to do.  And if so, was it worth it?

I was sad at how society places value and worth on so many other things, except those things or people that matter most. 

I was sad at how the jobs where you care for others, are the most underpaid, understaffed, and ill-supervised. 

I was sad at how society teaches that no, it’s not worth it.

I was sad at the realization that I had become a part of that society.

I was so consumed with finding someone to help me care for my son so I could go out in the real world and get a “real job”, a “real paycheck” and do “really worthy things”, that I saw caring for my own son as a job that didn’t matter. And by seeing what I did as just a job that didn't matter – the person I was working for, my son, became an object. One that didn’t matter.  One that had no feelings.  By falling into that trap, I understood why there was abuse in state schools, nursing homes, and institutions.  Some there probably felt as I felt.  That their job didn’t matter.  They were working for clients or consumers, and not people.  So what if they talked to them rudely.  It was just a client, not a person. So what if they moved an arm out of the way bit rough.  It just belonged to a consumer, not a person.  So what if they made them lay there wet or soiled a little longer….  After all, it was the middle of the night, who would know?  Who would care?

I do.

And my Legislator should.  My state should , and my federal government should.

And above all, society must.

I am not angry anymore, I am humbled. 

At how God used my son, the least of these in the worlds eyes, to teach me a most valuable lesson that all the beautiful, smart, rich, degreed, important, initialed people in this world, could not ever have taught me.

He taught me that all I have to do to define worth, is to look in the special rear-view mirror of my car – and see what is worthy in God’s eyes.  To see what’s beautiful, rich,  and intelligent in God’s eyes.   My son’s worth is that he is simply a child of God. Not disabled.  Just a child.  An individual.   My worth is further defined by knowing that in loving and respecting that individual that God thought important enough to create, I am doing what is most important in God’s eyes as well…

Caring for him…

~

And that is something I will never let society take away from me again.

Ever.

~

Yes my son, if caring for you is all I ever get to do,  it is worth it; and I'm honored to do it.

Please forgive me for the times I ever felt otherwise.