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.

~ ~ ~

Perfectly Balanced Christmas Blessings...

This is our "Life with Autism" Christmas Mantle decoration for the holidays.  Well, the picture represents our "Christ-Giving" decorations.  For all of November, I have Fall/Harvest/Thanksgiving decorations out.  Then the week of Thanksgiving, we put up the Christmas decorations.  Thus, our "Christ-Giving" week of family & fellowship at Thanksgiving.  Then after Thanksgiving, all the "Give Thanks" and Fall/Harvest/Thanksgiving Turkey decorations go back in the attic.

I have to chuckle when I look at our mantle and that Nativity scene.  When typical people look at their decorations, most likely the first sentiment they think of is the memory behind the object.  A family heirloom, the child's first ornament, etc.  But as an autism warrior-mom, when I look at a Christmas decoration in my house, I think of how many before have perished before I learned the fine art of velcro and super-glue.  Now, all of our Nativity things are cemented to a board by super-glue and velcro, then triple velcroed to the actual mantle.  No more Brandon helping the wise men reach their destination quicker by launching them through the air.  No more migranes for Mary after she was thrown against the wall by a caught-red-handed Brandon as he ran off after ditching the evidence of messing with things he knows he's not to mess with. No more finding the little drummer boy swimming in the toilet. Gotta love decorating "Autism" style!

But back to the Nativity scene in the picture...

Today was the "back to reality" day after a wonderful week with family here for Thanksgiving. All the cooking done, all the leftovers eaten. All of the quiet after all of the laughter from game after game that was played. The teenagers upstairs on play-station, the children in our playroom/fort under the stairs that Todd built to resemble what a treehouse would be outside; and us "old folk" at the tables playing cards...

So yeah, that back to reality brought a tedious day of picking up where I left off before last week, - in trying to answer parent e-mails, trying to find a doctor to help Brandon, trying to track down some lab results, while faxing others to yet another doctor clear across the country.

In trying to determine when my world would start spinning again.  As the mom of a Navy-man about to go off to Boot Camp, I feel like I'm in a time-warp. A black hole where while everything else goes on, my everything is in a stand-still. Wondering if Matt will leave next week as planned, next month, or the one after, etc.  As a mom of course I want any extra moment with my son. As a mom I know that the sooner he goes, the sooner he comes back.

This trusting in God's timing thing has always quite frankly frustrated me.  I believe in it. I know it to be true, but it's still hard.  I haven't mastered patience.

God knows that.  And that is why when Brandon's cup went missing yet again today, --- I was inadvertently blessed yet again by yet another dose of his perfectly balanced blessings.

(see link below for original writing on "Perfectly Balanced Blessings")

Brandon has this unbreakable habit of leaving his cup wherever he walked off to when he drank it. Always seeming to perfectly balance it in the oddest places.  We've found it on a pillow on his bed. Perched on the edge of the couch.  In a remote corner of the garage atop a tool.  In the middle of the floor. On the banister. On the TV.  On a chair.

Most often when we find it in such a precarious place, it's because we need a laugh.

But today, I found it in my Nativity scene.

Because I needed a lesson.

God knew that all I was thinking about and doing today, were things that are not in my control, but in His. So he directed Brandon to put that dadblasted cup in the only place in my house that so fully represents that.. Under the cross, in the Nativity scene, with Baby Jesus.  By the Angel that was right next to the big "Give Thanks" Thanksgiving decoration.

As with each time, in each place I have found his cup, I could only smile and shake my head in total humbled amazement about how God uses such a boy as Brandon, to be such a Blessing to me.  God doesn't need a perfect person to make his point.  All he needs is a person willing to deliver a perfect message. Today God used the sweetest, simplest boy to direct me to the simplest answer to the most complex, perplexing thoughts I was having.

The answer to any problem, stumbling block, challenge, loss, need, -- anything that threatens to steal anyone's Christmas Joy this season, can be found where I found Brandon's cup today.  Right there by Jesus.  Right at the cross.

I don't know if I'll get any help with Brandon's medical needs. I don't know if his seizures will ever stop.  I don't know if Matt will be here this Christmas or not...

But what I do know, what memory I will cherish this Christmas and every Christmas to come, is the finding of Brandon's cup.  Having all the questions that haunted me, answered in finding a green cup. I found peace in finding that cup today.  And that green cup will remain right where it is.  Super-glued alongside the figurines.

Reminding me to...
Leave my burdens at the cross.
Give my worries to Jesus.
Know that Angels are watching over him.
Give thanks.

When things don't go as planned, when people threaten to steal my Christmas joy, I will only have to look at my mantle, see Brandon's cup, and be reminded of how this child of mine, this boy who society treats as the least of these, who bullies laugh at and call stupid, this boy who doesn't even know what Christmas is, --- lead me to God's Perfectly Balanced Christmas Blessings.

Thank you Brandon....

Yet again.


Read the original "Perfectly Balanced Blessings" by clicking here  


~ ~ ~

A mom, a dog, and a stranger.

I think it's the Asperger's in me that dictates how sometimes I relate better to animals than people. So it's no wonder that my 40-something years of life on this earth have always been filled with animals.

I remember when we were looking for a family dog a few years ago after our previous dog had been hit by a car and needed to be put to sleep.  Being an autism-family, you can't just go "pick a dog." It has to be right for Brandon.  Good breed, good temperment, etc.  I was searching online and found a website of a local breeder.  Champion Labradors and other breeds.  Right here in the same city where I live.  I looked at the prices and quickly surmised that we could never afford that. But, something made me e-mail the owner, Kelli. I don't remember our conversation, but it centered around looking for a dog that would be a good fit for Brandon, our son with Autism. She invited me out there, she had a puppy needing a home and we might be able to work something out.  The moment I saw that little Chocolate Labrador that had a cut on his head from unfortunately having his head in the line of fire of his brother's sharp little teeth -- I fell in love.  He was exceptionally sweet and cuddly because Kelli had been holding him in her lap for a great portion of the day, with a warm compress on the cut. There was just one problem. When you have a child with autism, you have no extra money.  I guess she shared that with the co-owner of the dog - and long story short, Brandon had a new puppy that was given to him out of the kindness of a stranger's heart who lived several states away.

Matt, my other son, named him Chevy. After his truck, a Chevy Silverado.  (gawd I feel sorry for Matt's baby one day!)

Though Chevy comes from Champion lines -- a Champion mother and father -- he was never formally trained by us to do great things.  Yet it will never escape me how great things have been done through him regardless.
I remember the time, in a moment of human normalcy (Autism parents can't have "human" moments, we must always be in Super-hero mode. Nor can we have "normal" lapses of memory like normal people do, like forgetting to lock one of the dozens of things we must keep locked in our house at all times, lest we want a flood, fire, or a flight risk) one of us left the yard gate unlocked. We each thought the other one had eagle-eyes on Brandon, so we weren't alarmed by the knock at the front door.  We opened it to a neighbor we didn't know, but who apparently knew Brandon from seeing him out front with us on occasion. And knew enough about him that she shouldn't have seen him two blocks down the street on her way home.  Todd was the first one to fly out the door in the direction she pointed. When I got there, I saw Todd coming up to Brandon. And there was Chevy. I guess Chevy thought Brandon was taking him for a walk, but knew enough about Brandon by instinct I suppose, that he should stay between him and anyone else. And that he did. When Todd got there some man was coming out of his house to see why a kid was hand-flapping in his front yard. Todd said by Chevy's stance between Brandon and the guy -- that the guy would never have gotten close enough to Brandon to ask him why he was hand flapping in his front yard.

And in yet another moment of human-normalcy that we aren't supposed to ever have in being parents of a child, youth, and now young-adult with autism -- Brandon escaped our radar again. I swear, Brandon can smell an unlocked gate or door from a mile away. I must find a way to cash in on this extraordinary skill of his! So we found ourselves frantically looking in all Brandon's hiding spots in the house, to no avail. I went in the back yard, only thing there was Chevy barking at the kids in the park. If I wasn't so busy looking for Brandon, I would have told Chevy to shut-up! Then it hit me. Chevy never barks with that pitch of bark. Chevy never frantically sniffs the air like he was doing. Chevy never barks like that, sniffs the air like that, nor shuffles nervously while looking over the fence like that.  In the split-second I put all that together, I yelled in the house for Todd to go to the park.  Brandon was there.  Chevy knew he was over there and shouldn't be and he wasn't going to stop barking like that until we figured it out too.

Chevy, our sometimes psychopathic, annoying, loving, sweet, silly, hyperactive, smart dog. The dog who lays under my desk the entire time I'm at my desk working. The dog who can smell when Todd pulls in the drive way and is at the door waiting for him before I even know he's home yet. The dog who jumps on the trampoline with Brandon, puts up with his pinching and pulling. The dog who somehow understands that when Brandon does the sign for "more" that he must do "more" of whatever it was he was doing that amused Brandon.  The dog who knows that when Brandon shoves him off the couch, it doesn't mean he's being mean, it means Brandon wants him to chase him.  The dog who loves Brandon not for the affection he shows, but because of the food trail he leaves in his wake....that somehow makes it all worth it.

So imagine how I felt when I had to give up this dog.  This dog who had become my therapy dog more than Brandon's.

The reason for that being as complicated as "Life with Autism" is itself. One that could never be fully fleshed out in one writing. One that has never been truthfully or accurately portrayed in any autism awareness campaign by anyone.  Autism is merely sensationalized. Not even close to being accurately scrutinized in all the agonizing aspects of autism and just how far in a family the ripples of it extend.

Before August 2010 all our family had to deal with was autism, leaky gut, occasional cycles of seizures. Then after that date, it was all of that  and the most relentless seizure cycle to date.  Hundreds of myoclonic seizures a day (we didn't ever really count those, but they were there) as well as 3-4 Grand Mal seizures a day, every other day, every week.  Not one break from any of it for over two weeks time since then.

It took a toll.  A heavy toll. When my son wasn't having or recovering from a seizure, being picked up from school from a seizure or missing school from seizures, he was incessantly humming in some attempt to re-start his body systems no doubt.  My husband and I were on constant alert that truly necessitated those super-hero powers all parents of autism must have.  Again, no room for "normal human" behavior.  No.  Not with autism. Not for a second, not ever. Hence the toll autism takes.  Add anything extra, and you have the very reason the stress of autism parents has been compared to the stress of combat soldiers.  On the battlefield, combat soldiers can never be off guard. Nor can autism parents. The war for a combat soldier once home, never ends. Nor does it for an autism parent who must look in their child's eyes every single day and see the battlefield where they must continue their fight to reclaim what is still being taken by the enemy. No, normalcy has no place in "Life with Autism". When "normal" human behavior happens, their child wanders and most often drowns.  When that happens their child has a seizure and falls down the stairs where they could potentially be killed.  When normal happens, our kids get abused, neglected, or murdered.

While I have great Hopeism, choose Happy, and live Joyfully through all this, it still takes a toll.  The few "me" moments I found myself with, all I wanted to do was go to the Nature Trails by myself. Not take a dog, not have to be responsible for anyone but me. The constant guilt became too much.  My dog deserved better. He was still a puppy, he needed a lot of exercise. I could tell he was lonely, wanted to go for a walk too, but I had no time for multiple walks in a day. So I tried to find another dog to be a friend with him that he could romp with when autism got too busy and I wanted to just take myself for a walk.  All that did was create two problems for me, instead of one.

Chevy was too active for the dog acquired to be his friend... So in desperation I contacted the breeder. A complete stranger to me in every sense of the word. Someone who owed me nothing. Someone who gave me everything in that free puppy a few years ago. And here I was essentially begging her to take him back because I just couldn't handle it anymore. If I couldn't save myself, at least I could save the dog that I loved so very much.  I'll never forget the gut-wrenching feeling of driving him to her land. How horribly guilty I felt. Yet how wonderfully happy once there at how much he seemed to love running with the other dogs there. Room to run, new friends to run with, wrestle with, swim in a tub of water with.  Thankfully a week or so later, Matt's girlfriend & family fell in love with the other dog.  She was more a fit for their house than ours. They had just lost a dog, and the timing was perfect.  I love how God works those things out.

And then I was alone.

No above and beyond the already above and beyond stress of having to care for one extra someone, albeit only a dog.

While the hole in my heart was trying to heal and I was getting some much needed "recovery" time, it did not ever escape me for one minute that the very reason I had to give up my beloved dog, is the very reason so very many autism parents find themselves in the position of having to give up their even more precious, even more worthy, even more beloved, - child with autism.  I couldn't afford doggy-day care. I couldn't afford to pay someone to come run my dog.

Just like parents of children with autism.

All my dog needed was some friends to play with.
All our kids need are friends to play with.

All I needed was a place for my dog to go have fun, to get out of his stressful environment.
All parents want is a place for their children to go for recreation, to hang out, to have their own change of scenery.

All I needed was respite so I could refresh, recharge, renew.
That's all any parent of a child with autism needs as well.

It will never escape me how society doesn't get that. How churches don't get that. How autism organizations with millions of dollars to spend on respite that is desperately needed, don't get that.

But yet this stranger, this dog-breeder who knows nothing about autism, -- got that. She "got" that my dog just needed some time to run and play. She "got" that I just needed a guilt-free break. She "got" what my own autism community still doesn't "get".

Help. Real help. Tangible help. Free help. No waiting list help. Not ten-years-in-the-future-but-not-a-thing-now genetic kind of help. But rather someone being the right-here-right-now "hands" and "feet" of Jesus kind of help.

Something in her told her how desperate I was. Something in her told her to do that for me. Something in her told her I couldn't pay for the respite she was providing that I, and my dog, were so needing.

When I dropped off my dog, I had all his papers, to totally surrender him to her. I told her to find him a home with room to run and with kids to play with.  She e-mailed me some time later. She asked if I was sure I wanted her to find another home for Chevy.  But I just couldn't. I couldn't bear someone other than her, caring for him. She was Chevy's first mother. She cared for him when he had that cut on his head. Holding him in her lap, loving on him.  But I knew she was too busy. So I told her I would come get him. My situation at home was still the same, but I'd had time to just care for me any spare moment I had. I felt I could better handle it all again.  My super-hero powers were recharged.

I'll never forget the joy of having Chevy in my arms again. Of having above and beyond the already above and beyond chaos in our home again. Of my husband coming in our bedroom at night with the dog on his side of the bed looking at him like, "Where do you think you're going?  This is my bed again!" (smile)

Kelli said that anytime I felt overwhelmed and needed a break, that I could bring Chevy back to her for some respite. For me, and for him.  And that she wouldn't charge me.

I still can't comprehend that.

How autism organizations who have millions of dollars to spend just a portion of on funding respite programs that churches who have room to hold those events in -- don't. But yet how this woman, this stranger, who has no extra money, offered to help anyway.

And while we are all settled back into the crazy chaos that is our life with autism and my Chevy is back to standing guard beside me as I weed my garden, ready to pounce on any lizards, snakes, or bugs that may come out to attack me, I'll forever be grateful to that stranger, to Kelli, who saved this mom and her dog.

And I'll always wonder...

Who will be that person for Brandon one day?

When I can no longer care for him, who will offer to help?

Who will treat him like he was their own?

Who will be his Kelli?

~~~~

Click below link to learn more about Kelli...

Great Expectations

Of Cinder blocks, Sweat, & Prayers that Never Quit.

I love to write, even though I'm quite sure my grammar & punctuation would make any publisher or English fanatic cringe. Writing is how I think. How I record the craziness that is my life at times. How I preserve the thoughts I want to always remember. So as a disclaimer, this writing is not about Matt wanting me to take these pictures. Or share what he's doing. What he wants to be. It's my idea. It's the picture I saw in my head when I saw the cinder block. It's the words that formed as my thoughts unfolded...

This cinder block has history...

And  a few decades of sweat (and most likely vomit as well) permanently embedded in its pores from those brave enough to endure its relentless torture. As you can see it has the stain of the blood from those it has mockingly pierced as a testimony that there is no merciful day when it comes to this cinder block. This kind of old-school training. By this kind of old-school trainer.

Matt hates this cinder block.

He hates the pain it inflicts. He hates how it laughed at him and blatantly told him the first day that he lifted it, that he's not as strong as he thought he was. He hates how it taunts him and reminds him that while he is getting stronger, he's not as strong as he needs to be. As much as he resents this cinder block, he respects  it. He brings it in the house each night he is home as a sign of reverence for what it represents. For what it will help him accomplish. He respects it for who its trainer is. For who it has trained. As much as he hates this cinder block, he loves it because he knows if he gives it the due respect it deserves, he can conquer it. And if he can conquer it, that means he is one step closer to conquering his dream.

He knows this cinder block means change. That he must change. That he must mentally become as hardened as the cinder block. Harder than its trainer. That he must become one with the cinder block. Yet somehow still retain all that has made him who he is.

And as I watched him come home from a hard night of training with it, then putting it on his already bloody shoulder to run with it some more after dinner with his Dad, I couldn't help but be proud of him. I couldn't help but think how much he deserves this dream he is chasing. But I know all too well because of autism, you don't get things you want because you deserve them, you get things you want because you chased them. And never stopped until you caught them. Treatment, Recovery, that elusive Cure. I can't help but be impatient in wanting to already know if this cinder block will get this son where he wants to be.  Yet I know even if it doesn't, his journey will not have all been in vain. At all. Just like if I never get that recovery for Brandon, the journey will not have been wasted. We've learned too much. Grown too much.

Patience is taught by this cinder block. In pain. With blood. With sweat. With endless working. While endlessly waiting. In his training, Matt has seen another wannabe come and quickly go because of this cinder block. Much like with autism, you don't come to this cinder block tired expecting ease. In fact, you don't come to it expecting anything at all, except more work. And often pain. You pick up the cinder block tired and do not stop lifting it, carrying it, becoming one with it, until it is tired. And much like how autism never tires, cinder blocks don't tire. Which is precisely why SEALs aren't ordinary men. Autism parents aren't ordinary parents. And SEAL training isn't ordinary training. Life with Autism isn't an ordinary life.

I wondered what words others who have trained with this cinder block and who have gone on to realize that elite dream would use to describe it.  I asked Matt what the cinder block means to him in training with it. He said words like "brotherhood". "Blood determination". Much like our "Life with Autism" has set our family apart from being "ordinary" to being transformed extraordinarily, he wants the set apart brotherhood of what training with this cinder block represents. Much like no one knows what living life with autism is like except those in that brotherhood, he wants to be one with each of his brothers who know exactly what he went through to be one of them.

Life with Autism has prepared us for this cinder block. It has been our cinder block. Nothing has been given to us. Nothing has come easy. Before our cinder block of autism we thought we knew all there was to know about life. Then when autism hit, we were starkly reminded how we really knew nothing at all about life. Nothing that matters anyway. Our autism-block changed us. Everything gained, has been gained by blood. Sweat. Tears. We've had to work harder for every victory. Wait longer for any accomplishment. We've been more deeply crushed by every defeat. Yet much like with Matt and the cinder block, we've developed callouses so that we could endure more and more, bear heavier and heavier loads, press on harder and harder. We've known that to get where we want to be, we have to over come more than most. Endure longer than most. Tolerate what most cannot. Do what most will not.

Though Matt is the only one who holds the cinder block, each of us are being further trained by it as well. And even though there is nothing funny about the cinder block, I like to find humor in what it's training Matt for. The Navy SEALS have a motto that they use in their training that says: "The Only Easy Day Was Yesterday".  I like to think that with our "Life with Autism" motto of "There Are No Easy Days"... -- Matt will have a slight advantage going in...

(smile)

But no.... I don't know the future...  Every time I thought I did, it mocked me as the cinder block first mocked Matt, and reminded me that I know nothing.

I only know what I can see right here and right now through this blasted cinder block that sits by our front door...

And that is my son.

A man of faith. A man of determination. Of strength. Of indomitable will. And not of the ordinary kind of those things.  Of the kind of those things that being a family living with Autism forges, which is much like what kind of warrior-spirit that cinder block forges for those who dare to pick it up..

This child who was raised by a Father and a Mother...who Never Quit. This boy who saw his brother with autism and seizures defeat death time after time...and who because of that will Never Quit...  This teenager who excelled at all he did in part because of having a brother who couldn't do all he could do...and who because of that will Never Forget that and Never Quit. This man who will not be defeated by a bell at BUD/S... because he will Never Quit. This Christian who loves a God...whose plans to prosper him will Never Quit.

So much stands between my son and his dream.

He's come so very far.

He's got so much farther to go.

Only Matt knows how much he wants it.

Only God knows if he will get it.

All we know in the meantime, is of cinder blocks and sweat...

And prayers that will never quit.

HOOYAH!

On the corruption of my husband...

I'm not sure what made me think of doing this... I guess for an escape from the heavy issues I've been facing lately my mind must have needed a bit of levity. Or lunacy. Knowing me, perhaps both.

Either way, I found myself thinking about my husband and how he has changed over the years since I first met him. As he casually remarked this past Sunday, "Nothing about our life is normal..... We're not normal, our kids are not normal... Our dog isn't even normal."

But I remember when we were.  My husband especially. When I met him, he was pretty normal.  Perhaps too normal. His family was, is, a very typical Bible-belt Church-going family. They are pretty routine, live simply, follow the rules, don't make a ruckus. They, like Todd, are really good people with good morals and good values.

Which when I consider what I and my free-spirited with attitude self had to bring to the table in our marriage, I could kinda see why his family got together and took up a collection in an attempt to bribe him not to marry me.

(smile)

Coming from an Italian/German family - I was raised by Uncles who could have starring roles in any of the Godfather movies. And I mean that with utmost respect and admiration.  I would always secretly tell my friends we had mafia connections and that anytime I wanted to I could send my Uncles after them.  I think before I learned how to write my name in Kindergarten, I knew how to jew a vendor in English-town on the price of a piece of most likely stolen luggage.  My Uncles made sure I knew the important things in life!  Ha ha ha....

My family was big. Big fun, big laughs, big loud, and big 'if the food wasn't perfect at a restaurant, it went back and back until it was cooked right.'

Big opposite of Todd's quiet, to themselves, never complain about anything family. And I mean that with the utmost respect and admiration too.

It was just funny when we figured out how different our upbringings were. Ok so maybe not funny at first, but eventually!

I had bought Todd something that didn't fit. One day he was going to Wal-Mart and I gave him the bag and receipt and asked him to exchange whatever it was. He looked at me like I just asked him to kill his mother! He had never returned anything to Wal-Mart before that!  While I, on the other hand, cannot count how many times while in Wal-Mart I had to stand beside my mother in horrified 'beam me away' shock as she would argue with a sales manager about why he wouldn't take ten extra dollars off a minutely scratched lawn chair (or any other item she wanted but didn't want to pay full price on) already on red-tag clearance.

Teaching Todd that he would not in fact die if he returned something to Wal-Mart was when my corruption of him formally began. Well, after the corruption of our Wedding reception.  We had planned for everything, but not for the fact that my family drinks and his family doesn't.  My family brought out the wine at the reception and it was like Moses had entered the room and parted the red sea.  "Would all the hell-bound Catholic drinkers please go to the right of the room!"  "Would all the heaven-bound Baptist non-drinkers please go to the left of the room!"

Todd and I still chuckle about that......

I like to think I brought a bit of insanity to his sane world.

And I know he's brought a bit of saneness to my insane world.

Life with Autism helped with that. It was hard for him to be serious when he walked in the front door and slid half a mile in a pile of poop I had missed during some tough "Leaky Gut" days my son with autism had.

He eventually quit turning red when Brandon would launch a glass jar of jelly out of the grocery cart and everyone would stop and stare at us like we were circus freaks begging for money on the corner of 5th and Main.

He eventually came to appreciate the fact that Brandon's humming, while mind-numbingly irritating, not to mention horribly embarrassing in public, did serve a purpose if we ever got lost in, you guessed it, Wal-Mart.  We all knew to just follow the noise.

With the corruption of my poor husband came his sense of humor that I'm now sometimes jealous of.  This man who was so serious, so proper, so reserved, was actually heard saying when we pulled up in yet another church parking lot to eventually not feel welcomed at -- "If someone says Good Morning to me, I think I'll punch them in the face!"  This during a time when our son with autism refused to sit in a car seat and when made to would scream the entire way to wherever.  During those years we lived one wrong look away from jail.  Honestly, looking back, if we hadn't been corrupted into gaining a sense of humor and a deeper love of Christ, both at the same time, we wouldn't have survived.  Our marriage sure wouldn't have.  Who had money for marriage counseling?  Who had time to read a marriage book?  We had to learn to do things the old-fashioned way -- by digging deeper and dealing with it and not running away. By Hard Work. By Faith. By Prayer.

By Laughing.

Recently my husband made me laugh so hard I thought I was going to die.  He had just gotten out of the shower and was drying his hair. He paused. Brought the towel to his nose and smelled it. Sure enough, Brandon had somehow peed on it and he had just dried his hair with it.  Now you know you've been totally corrupted when you don't immediately jump and freak out like normal people would.  No... not my husband. Well, not my new and improved corrupted husband.  He paused another moment. When I asked him about why the pause, he said he was trying to decide if it was a recoverable incident, or a non-recoverable incident. When he explained that, I just exploded in laughter. I mean some aerobic, calorie-burning get the ben-gay out for the muscle strain laughter. To him, a recoverable incident would just be where he can wipe pee or poop off his hands or something and go on.  A non-recoverable incident would be something that you couldn't.  Like having to get back in the shower so your hair doesn't smell like pee all day.

Hence the newly coined term in our house, "Well, that was non-recoverable!"

Ahhhh, I'm so proud of my husband.  I've done him good over the years.  Life with Autism is teaching him well.

And speaking of dying laughing... We even have our gravestones planned out.  That's how corrupted we are.  All of us.

All four of us will be in a row...  I, being the Queen Corrupter of the House, will be first with my Gravestone reading:   "Finally, no more poop!"  Todd will be next with his Gravestone reading:   "Well, that was Non-Recoverable!"  Matt will be next with what he always says after a "Non-Recoverable":   "You just can't make this stuff up!"  And Brandon, our dear sweet Brandon who has corrupted us all so very much in the very best of ways, -- his will read:   "And everyone always thought I was the weird one..."

Yes, I am very proud of how each of us has changed, has evolved, has learned to embrace life and enjoy it to its fullest despite all the things that try to empty it of happiness.

I'm proud of the ways the good crazy in me has rubbed off on him, and how the good sane in him has tried to rub off on me. Though I think I've fared better in corrupting him.  One day when I received a copy of a magazine one of my stories was published in, with a serious look on my face I handed it to him telling him he should share it at the meeting he was going to at church.  He looked at it, then looked at me, rolled his eyes and said, "You do realize I'm a Deacon, don't you?"   I laughed so hard. I just couldn't help myself.  The magazine was the "Brimstone Bulletin".  I had been published in "Mother's from Hell".

I know.  I am bad.  And my husband is so very good.  And so very corrupted.  Where once he was mortified by my antics, he now says, "Give me the list of churches, time to move to another one after that...."

Why... I bet one day at work he'll even be brave enough to say to someone bragging about their kids triple-play or winning home run on the state playoff game, "Well, my kid can out poop your kid!"

And then walk off smiling.


Ahhh, it's a dog eat dog world out there...

And I'm so glad we're Guppy's.

Choosing Happy. Living Joyfully. Following Christ. Wearing Camo.
                                         The Guppy's



P.S. -- when I asked Todd for his permission to share this, he shook his head as a man knowing he had no choice, and replied:  "You shouldn't be allowed on the internet!"

Ha ha ha ....  I love you Todd!  So very, very much...