The Joy Box...

I have a "Joy Box" in my office. 

Got the concept from one of my favorite Christian authors of all time -- Barbara Johnson.  I suppose my motto is from her life --- Choosing Happy, Living Joyfully, Following Christ, and for me, -- Wearing Camo.

She's been through some STUFF in life, but like one of my new motto's -- she "Made her Mess her Ministry".  As part of that ministry, she kept a "Joy box" of things that when life got her down, she would go to that and look through each sentimental picture, thing, or saying, to cheer her up.  I have a "Joy file" as well as a "Joy box" -- I've saved e-mails of thanks from folks about my writings, quotes from people, etc.  Things to encourage me or make me laugh when I need to.

I guess this evening I found myself dreading taking Brandon to the doctor tomorrow because of his shoulder.  It just keeps popping and crackling and my stomach churns each time I hear it.  I hate being a "the glass is half empty" person in situations like that, but I've got a good record going, in how the glass is indeed half empty when it comes to our track record in such doctor visit matters.

And of course, misery loves company, so I thought about how I was missing my son Matt as well.  How we are back to "Boot Camp" days of little to no communication.  (Anything less than a Skype a day, a call a day, and a dozen texts a day, in this mamma's book translates to "little to no communication.)

So I found myself digging through my "Joy box" and I came across Brandon's t-shirt I had put in there long ago...

 
Not only has he grown since that toddler-sized t-shirt -- but he's changed.  I've changed. Our family has changed.  And yes, because of all those changes in us, the world of autism we live in has not only been unlocked, but changed.  We may always have some difficulties, but in just looking back at that t-shirt and how autism affected the newly diagnosed boy who wore it at that time, compared to the young man of now, -- oh my ---  how.he.has.changed.

Some things however, ahem Matthew, - don't change!  Ha ha ha....

I actually had to resort to my "Joy file" of humorous quotes to get me over missing my Matt.  I came across this one:

“Cheer Up the worst is yet to come!”
― Barbara Johnson

I think I put that in there during a particularly "high volume call period" from the AP at his High School to me at home.  I think that might have been the time the track coach asked if he could have free reign to discipline Matt for driving to Sonic during practice, and when Matt felt he could just leave school to drive to Wal-Mart to get a poster board for his next class and have no one notice.  (Which, the way he drives, I'm sure he indeed felt he could get there and back between classes!)

But much like that t-shirt of Brandon's -- that quote I put in there for Matt has proven true too! The worst kind of worrying for a parent is yet to come for us!  Matt is now in a training program that will test him, and us, in every way possible.  Oh, for those AP phone calls instead of dreading a phone call that he's injured or something! 

Which is why a parent shouldn't worry in the first place.  There's always going to be something worse to worry about, than the trivial thing you're worrying about right now!  Ha ha ha....

I even have a quote in there for that situation:

“Hope is not the conviction that something will turn out well, but the certainty that something makes sense regardless of how it turns out. ”
― Barbara Johnson

That puts a lot of my worrying into perspective. 

Assures me that there is purpose in all things.

My Joy box reminds me that sometimes when I think I'm not getting anywhere, I need to go back and be reminded of where I've been. But most of all, my Joy box reminds me to laugh, and to laugh deeply.  Something Barbara Johnson's writings were all about.  Using humor to cope.

She laughed deeply, as do I each time I read this very last note my beloved Grandpa ever left under my pillow.  It was a tradition of his to when they left from a visit, leave a note to me under my pillow that I would find that night.

Ha ha ha, - sorry Grandpop, but as many things in my life that have changed for the better ---- "cutting down on my sassing" hasn't been one of them!

But then again that's probably what has allowed me to bring about the most change in the autism world we live in..........

To each of us having a Joy box full of joy, love, and laughter!
To changing the world we live in!
To HOPEISM!

To all the Warrior Moms of Autism on Mother's Day.

It's no secret that I have a high regard and respect for the U.S. Navy SEALs.  My son's hero is a Navy SEAL, and because of that I have read all there was to read about them.

As a Warrior Mom of Autism, those books have inspired me.  Those books share about the mental strength one has to have to be a SEAL.  The same mental strength a Warrior Mom of Autism must have as well! 

SEALs for the most part fight enemies they can see using a battle-tested strategy they have studied and prepared for.  Warrior Mom's have no such intel and must fight an enemy we can't even see --- autism.  Oh, we know it's there and has captured our child - what we can't see is exactly where it is.  What we don't know most of the time is what to do.  Mainly for me because my son can't tell me where it hurts.  What is bothering him.  How I can help him.  SEALs must fight the enemy using rules of engagement that aren't fair.  Mom's like me are engaged by an enemy whose rules constantly change and whose tactics aren't ever fair.  

SEALs become SEALs because that is what they want to be. They fight because they chose a path that would necessitate they do that.  Warrior Mom's are not Warrior Mom's because that's what they wanted to be.  They were made to be.  They fight not because they wanted to, but simply because they have to. 

Navy SEALs enlisted.

Warrior Mom's didn't.

SEALS are the best of the best, that one percent of the nation whose character, willpower, strength and stamina cannot be beat. 

The Warrior Mom's I know are the same. 

To become a Navy SEAL, that BUD/S Candidate must go through a grueling testing.  One of the "highlights" in that hell, is Hell Week.  Those candidates must endure every form of physical training and "surf torture" a person could endure, all while not sleeping for more than four hours that entire week.  Some Warrior Mom's I know have gone weeks on four hours of sleep. That Hell Week pushes those candidates to the ultimate extreme of what a person can handle both physically and mentally.  As does Autism. They must be able to endure and survive Hell Week if they ever hope to survive a deployment to a war zone once a Navy SEAL.  We must survive a diagnosis of autism if we ever hope to rescue our child from it.  It's an unforgiving training, and one that is necessary if they are to become what they want to become and are -- the Nation's best of the best.

As much as "Hell Week" is the highlight of a Navy SEALs training, "The Bell" is the highlight of Hell Week. The bell as pictured above, is located at the "Drop Area" on the base in Coronado where they train.  When a candidate can endure no more, for reasons only they know, they take that solemn walk to where the bell is and they ring it.  They place their helmet under that bell on the concrete in a row where others before them have done the same. To the candidates who see that bell each and every day, it is either a friend or a foe.  It is a motivator encouraging and challenging candidates to Never Quit as much as it is a tease that begs them, taunts them, and assures them they will give up and quit.

The test for a SEAL wanna-be -- is which voice will win.

I guess for me on this Mother's Day, as a Warrior Mom of Autism, -- I find that bell and all it represents more inspiring than any gift or Hallmark Card.  I know that as a mom whose son is severely affected by autism and in all the ways that diagnosis has affected our lives - that bell represents all the extremes I have endured.  All that all Warrior Mom's of Autism endure.  In what we have to go through each and every day from the moment our child is taken by autism.  In trying to reclaim them from that autism we sometimes daily go through our own Hell Week.  For the SEALs, "The Only Easy Day was Yesterday".  For us, "There Ain't No Easy Day."

Heck, there ain't even no bell for us to ring even if we wanted to!

Let that sink in...

In their training, the elite of the elite have a bell to ring for their pain to stop when they've had enough.  They can choose to ring it and be free of the pain, or go on enduring the pain for the triumph over it that their earned Trident pin, the symbol of a Navy SEAL, will bring.

I know no Warrior Mom of Autism who has given up.

What I do know, is that there is a row of helmets of those who have tried to defeat us or our child, but failed.

The reward for those of us who never give up isn't a trident to wear, but our child that we've healed.

Or died trying to...

And that's what I want to share with my autism-mom friends on this day.  Especially for those like me whose child cannot even make them a card for Mother's Day or tell them that they love them.

That you are the top one percent of Mother's in this Nation, in this World. 

You have endured what no typical Mother could ever endure.

You have made it through each Hell Week autism has thrown at you.

You were not given a bell to ring when you've had enough and wanted to quit - and even if there were one for you to ring ---


You wouldn't.


From reading about Navy SEALs to keep my own mental strength where it needs to be to survive autism, I came across Richard "Mack" Machowicz and his "NDCQ" (Not Dead Can't Quit) philosophy.

I'll leave you with his encouraging words on this Mother's Day---

Dream! Dare! Do!  N D C Q!!

Keep DREAMING the wildest dreams for your child...
Keep DARING to defy those who say those dreams can't come true...
Keep DOING all that is in your power to change attitudes, policies, discrimination....

To HOPEISM!

HOOYAH!

A Call to Autism Action

Please share this far and wide:

Click here to join the movement in demanding Congressional Hearings on Autism.

The Autism Awareness Month Blog...

The "Thirty Steps in our Shoes" Autism Awareness Blog is now here on the below link for any future reference...

Click here for the Autism Awareness Month Blog - Thirty Steps in our Shoes

When life ain't fair.

Sometimes it's too much.

Too much to bear, too much to understand, -- simply too much.

To have a child with autism, one could learn to accept and overcome. To have a child with autism, epilepsy, GI disorder, and a mystery-illness causing weight loss that he can't afford to lose to begin with, -- is just not fair.

I get that in life we must have "crosses to bear" -- what I don't get, is how life has free reign to keep nailing more crosses on the one you already have.

I don't get how heroes like Dr. Wakefield, who have done more for Autism and GI issues than anyone anywhere, must not only bear the cross of shame that others put on him because of being threatened by him, but must also now bear the cross of lawsuits in defending himself and the financial toll that takes. And not only those crosses, but as if that weren't enough, his sweet, angel of a wife was in a car accident and has a very long recovery road ahead of her.

I don't get how my friend, the person who is responsible for helping me get Brandon out of the public school that did nothing for him and into her school which has done everything for him, and who is the mother of a son who has autism, plus another sweet little boy --- I don't understand how her husband must be killed in a car accident.  Her love-of-a-lifetime soul-mate husband! 

I don't understand why each and every day I'm faced with knowing I have single friends who have children with autism and whose spouses have left them.

I don't understand why each and every day I'm faced with e-mails from parents of children with autism needing the financial resources that simply aren't out there.

I don't understand why each and every day my phone rings from parents who need help because their child with autism is not getting what the law requires them to get in the public school, but who do not know enough to fight them.  And even if they did know enough, they could never afford to.

I don't understand all those things and much more about this "Life with Autism."

I don't understand it to the point where I just want to scream in rage. I want to hit. I want to destroy. I want to simply shut out the pain and not care. 

I simply want to hate.

But what I do understand...

Is this...

You can't do that.
You can't shut out the pain.
Because if you do, this happens:

When you close your heart to the bad in life, you also close your heart to the good in life.
When you close your heart to not feel pain, you close it to not accept healing.
When you close your heart to not feel sadness, you close it to not feeling happiness either.
When you close your heart to keep sorrow out, joy can't get in.
When you close your heart to try and prevent that hatred from seeping in, love can't find its way out.
When you close your heart and reject God, you open it to allow satan in.
When you simply give up and don't care, thus shutting out all the lies and injustice, it means you've also given up the even greater fight to let the truth out.


And as much as life hurts sometimes, especially lately, I refuse to allow those things to happen.

I will keep my heart open to see the beauty, choose the happiness, and experience the joy that life has to offer.

I will keep my mouth open in proclaiming the truth.

I will.


Even on days like today, when I don't want to.

Amazing Grace

It's going to be feeble at best to put into the words this picture of my son Brandon I took in the van today.  Brandon has been so sick lately, has lost so much weight. This past weekend he was laying down more than he was standing up.  He's not eaten enough to keep a snail moving.

Yet today as we were driving back from the Pediatrician's office for a weight check, he just started smiling.

Giggling.

Laughing.

For us, pictures like this are rare.  In fact, so rare that I keep the originals in a safe, because they are that priceless to us.

But today, in those few moments the smiles were not rare. They showed me how Brandon lives his life -- smiling, even though those smiles don't always show.

We had the windows down in our tan minivan and he was enjoying the breeze coming through the car and the music was playing on the radio.

You would never know by this picture all that this young man goes through in a day, in his life, and perhaps the purpose of his smiles today were to remind me of how that's supposed to be in my own life.

I'm not supposed to be bummed out that he still isn't eating.
I'm not supposed to be bummed out that all the lab tests trying to figure out why he's so sick came back negative.
I'm not supposed to be bummed out that I have no clue what to test for or do next.

I'm simply supposed to enjoy these moments. This child. This life that despite its challenges, has purpose.

Perhaps that's why God sent those rays of light through the open windows like that, to highlight the kind of attitude we are to have in all things. 

How we are to Choose Happy. Live Joyfully. Follow Christ. (and wear Camo).

Not fifteen minutes after I snapped that picture, I had to once again pull over on a busy street with no shoulder because once again he was having a Grand Mal seizure while I was driving.

As I was holding his head waiting for the seizure to stop, and as I could hear the swoosh of the cars speeding around me last minute and just holding my breath hoping they wouldn't hit me, --- the song Amazing Grace came on the radio.

I could do nothing but smile.

I could be nothing but happy.

I could be nothing but joyful.

And so we sat there until I could get him settled and continue on home - and with the windows still down, sang that song for the both us.....

And marveled at just how amazing grace really is.

Click here to listen to "Amazing Grace" video 

~ ~ ~ 

We are Glass

 It's been a while since I last shared here...

But with April - and Autism Awareness month quickly approaching, - and an incident in my head way back from Christmas -- I thought now would be a good time to put on this blog, what's been on my mind...

I'm already beginning to see things here and there having to do with "Autism Awareness month"...and quite honestly, if someone asks me to "Light it up Blue" again this year, I'll vomit.

Autism Awareness month anymore has more to do with mega-autism organizations raising money to do nothing of impact to an actual family or individual living with autism; than it has to do with truly understanding what it is they are making you aware of.

Who it is you should be aware of.

The child, youth, or adult with an autism spectrum disorder...

The family who loves and care for that person...


The marriage trying to survive autism...

And trust me...you won't see it on any commercial or on any e-mail blast.

You won't see it by "Lighting anything up Blue"...

You won't see it by blindly writing a check to any mega-organization thinking your funds are doing a family good.  Most families will never see that money you donated to that organization.

You'll only see it by taking the time to know someone with autism. By walking in their family's shoes for a day. By directly asking them, "How can I help you?"  And if you are not in a position to help them "hands on," you could best help by asking them, "Who can I donate to, who will directly help you?"

You would have seen what autism awareness needs to be about by spending Christmas with us this last year. And because you will never, ever see "true autism" in a 30-second commercial (reality only sells in a reality show on TV) -- I will again boldly go where most others let alone the mainstream media won't dare go, in sharing the good, the bad, and this one-time really ugly, ---here.

Last Christmas was perhaps one of the hardest (yet one of the best) for Todd and I in our marriage and in our "Life with Autism".  Since August 2010 our son with autism and epilepsy has been in a sort of decline, a relentless seizure cycle combined with other medical issues that have manifested their ugly faces in his beautiful innocent body.  Combine that with little to no respite, and you have many stresses that collectively break the camel's back.

Our oldest son was off to Boot Camp so Christmas was already quite different.  The first time ever we didn't have Matt home with us. My brother and his family traveled to Missouri to spend it with our mother in hopes of having a "White Christmas" for their little ones to experience. Brandon was not in any position to travel, and even if we were brave enough to attempt it, we did not want to be in another city should some crisis happen.

So, for the first time ever, Todd and I and Brandon spent Christmas alone.  Didn't get to go to church, didn't do anything or go anywhere.  We just enjoyed the simplicity of a different kind of Christmas courtesy of our different kind of life.

And you know, -- it was ok. 

It was actually quite inspiring to be celebrating Christmas in the way that very first Christmas was celebrated so very long ago, with just Mary and Joseph and their precious son. It was a time to reflect on and appreciate what Christmas should really be about.  No things, not even necessarily a house-full of people.  But the love of all those people in your life, whether near or far.

Todd and I took pictures of each other holding live lobsters and then I made Lobster Bisque with fresh lobsters.

We smiled, we laughed, we loved, and we had a really, really good Christmas.

I'm not saying I'd like to do that again, (the Lobster Bisque I would) but for that time in our life, it was as it was planned to be, no doubt.

But then the day after Christmas happened.  Already in the two weeks before Christmas our Brandon was in the Emergency Room twice for staples in his chin from falls from seizures. He had been out of school for over a week.

The constant paranoia of atonic seizures that happen suddenly and just as suddenly slam Brandon into a wall, a table, the floor - was becoming too much. Where tag-teaming typically works for us, in allowing one of us to escape to the outside world for a while and the other staying home "on watch" and vice-versa -- this situation was different.  It took both of us tag-teaming in the house to keep an adult sized child who knows no danger, doesn't understand sit down and watch a movie, whose personal challenge it is to see how high he can climb or jump and how many times in a day he can go up and down the stairs in a two-story house.

Which again, we live with all that each weekend, but we at least have the absolute blessing of school five days a week to store up energy during!  A few weeks of no school, and you're depleted the first day.

It was Todd who had to go out and do something, and I texted him about something. I didn't like his reply. He didn't like my reply to his reply. I didn't like his reply to my reply of his reply. And well.... you can see where I'm going with this. When he got back home, we both yelled. We both cursed. We both yelled some more and I invented some curse-word combinations that would make a sailor shudder.

No we're not proud of that. No we don't do that. Yes we are Christians. Yes we faltered. Not that autism causes that, but the stress of the situation we were in, had been in for a very long time, can. Does. Did.

I think it was after I slammed a bottle of Italian Salad Dressing as hard as I could on the table (Note to self: if you slam a bottle of Italian Salad Dressing as hard as you can on the table, remember that it will splatter all over you and you will smell like Italian Salad Dressing the rest of the day. This point will become relevant in a minute.)

It was right after that - and in the middle of more subdued arguing (we were yelled-out at this point) that Brandon had another atonic seizure, hit the counter, and split open the skin right above his eye. Both Todd and I standing not three feet from each other, and on either side of Brandon.  That is how fast and how suddenly those atonic seizures hit and cause him to drop.  You can be right there and still not catch him in time.

(Thus sending me to the emergency room, even with changed clothes, still smelling like Italian salad dressing.)

Nothing like a seizure to stop an argument mid-sentence!

We are fragile. We are human.  We sometimes shatter. We sometimes blow up like gasoline in fire. We were a picture of what autism awareness in April is supposed to be about, but isn't. We were what the money people throw at Autism Speaks during Autism Awareness month is supposed to help prevent, - but didn't. Doesn't.  Because most often people like us never see the benefit of those funds. For Respite. For community programs for our son to safely attend so he can get out of the house. For the stress relief we in turn would have by going on a date while our son is out having fun with friends.

I don't want to go out if it means my son's only option is to stay home.

Make no mistake, as strong as autism has made us, we are still breakable. We are still glass. We are blessed in that through the darkness of the initial diagnosis of autism and in the still relentless seizures, we've learned how to shine. Our marriage has somehow managed to shine through the darkest of days like that day was. 

Oh how we've learned how to shine!  But sometimes with no break, we do break.

Thankfully, God doesn't.

For Todd and I, that's what saves us. That's what saves our marriage from days like that day. God picking up our pieces, and putting us back together again.

Just like he does for our son each time he has a seizure and falls and cuts something open.

For each of you who do not live with Autism -- April cannot be about lighting it up blue, walking for a cure, or writing a check to make you feel that you are making a difference in the life of someone with autism. Because if it's written out to mega-organizations like Autism Speaks, you haven't.  We're not a disaster relief opportunity. We're not tornado victims even though the stress and chaos we live with daily is a Cat 5.

What it needs to be about and who we are, is an individual.  A family.  A husband and wife whose marriage needs respite so it can suck in as much light as it can for the days when its dark.

It needs to be about a community that helps and supports each other. 

A church realizing that for essentially six days a week they have a building that can be used to host community programs or respite opportunities for these individuals.

A Sunday School Class saying we can pool our resources to help support those local organizations that do support individuals and families living with autism.

I can't even find the right words to put into words just what it takes for a husband and wife to stay married in "Life with Autism"...  All I hear out in the mainstream is "communication," "communication," "communication."   Parents of children with autism do not have that luxury. They are lucky to get 5 words total out in between this crisis or that, this moment or that. To get a sentence out would mean it's the middle of the night and their son finally fell asleep, except that now they must too, to be able to do it all again tomorrow with no help.  These families must learn to keep a marriage despite not being able to do anything it even takes to keep a marriage!  They can't fall apart because of a crisis, their whole life is one crisis!

When you understand what it takes to even keep a marriage in "Life with Autism" - then you can perhaps even somewhat begin to comprehend the sheer amount of stress that it took to crack ours that very awful day.

That's what Autism Awareness month misses.  In the hoopl'a of this or that, in the raising funds for this or that, we miss who it is we really need to be aware of so we know best how to help.

This April I'll be just as aware of autism as I've been since my son's diagnosis in 1996. 

I won't celebrate autism as some sort of frat party or art exhibition.

I'll instead celebrate the God who shines through our son and who is always faithful to pick up and put back together the pieces that the stress of autism sometimes shatters.

I'll celebrate my husband and marriage that I'm reminded of in the song, "We are Glass."

(there is a link to listen to that song and watch that video at the very end of this writing)

I'll celebrate our marriage that with God's love, grace, and mercy is steel, even though individually he and I are truly but glass.

I'll celebrate my son who lives with autism and seizures and a host of other challenges...yet who is anything but --

Glass.


~ ~ ~


Michelle M. Guppy
For Autism Awareness Month

If you would like to make a difference in Houston for Autism Awareness Month, please contact me for suggestions on how you can help and who you can donate your money to:
MichelleMGuppy@yahoo.com

Thank you Todd for taking a chance and going through it all with me...
Better and Worse
Richer and Poorer
Sickness and Health
And for having the faith that says whatever glass breaks in our life, God will help us put the pieces back together.

To watch video "Glass" - click the link below:
Click here for video of song.

~ ~ ~