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Blogging:  Never before have so many people with so little to say said so much to so few.

Perfectly Balanced Blessings

I'm sure it's a morbid thought that I shouldn't share...but each time Brandon has a grand mal seizure, I think of what I would miss most about him if he were not to live through it.

I mean, other than praying, there's not much else one can do while watching your child shake and tremble and choke uncontrollably while their lips turn blue and their face goes pale during those 1-4 minutes that seem more like 1-4 lifetimes.  It is the most horrific thing that I've experienced as the mother of a son with autism.  Those seizures.  Those blasted seizures that make the thousandth one seem like the first.  Those seizures that you think after the thousandth one you would handle it like a veteran, but you don't. You're still a scared, shaking rookie who wants nothing more than to scream "Uncle!".

Or like I do, panic and dial 911.

That's how I felt this morning after Brandon's second seizure in less than 12 hours.

Plans for the day replaced with laying beside a peaceful boy as he sleeps it off.

New plans made for following him like a hawk once he was up and slowly moving about.

And doing that, is when I found the cup in the picture above.

The cup my husband and I often see perched about our house at unexpected times, perfectly balanced in unexpected places.

Brandon's cup.

Todd and I share that smile of understanding that only we can know, when it comes to that cup and the places it's been periously perched.

Always half full of something in it he's drinking.
Always perfectly balanced.
Never spilled.
Just carefully set atop whatever he was by when he was done drinking it...  On the corner of the couch, the one inch ledge of the TV, the corner of his bed on the blankets, the table saw in the garage, the pool rail out back....

This child who cannot read, write, or talk, but who can perfectly balance a half-full cup on a pillow.

Whenever we see the cup, we cannot help but smile.  That amidst the chaos and confusion of our household, among the challenges and obstacles we face in our life with autism -- that something as simple as a perfectly balanced cup can make us smile and remind us of God.

That like Brandon's blue cup, He's there where we least expect to find Him.

I think that why seeing that cup so unexpectedly makes me smile, is because sometimes it is hard to see God's blessings when we're going through trials and tribulations.  It is hard to focus on the obvious...  That God is there and He does know what we're going through and that we aren't alone.

That's why I think that Brandon's blue cup is one thing I would miss most about him should a seizure take him from me one day.

That reminder just for us that such a seemingly imperfect child could do something so perfectly.

That when we're having a day where we just want to cry, we find that cup somewhere and just start to laugh.

The lesson he teaches us in how when it comes to God, we should always expect the unexpected!  We should always expect to find miracles in the darkest valley.  Peace among chaos.  Beauty in the sometimes ugliness of life.

I watch him wander around the house like he is now, still a bit groggy, but wanting to just do and be despite what he's just gone through; and I can't help but just smile at how God uses this simple sweet little boy to bring such unexpected joy in my life! 

I smile at how God uses Brandon and a blue cup to remind me of how He perfectly balances the scale of hardships with so very many blessings.



Now if only I could find a way to have each seizure he has take off five pounds of fat instead of five years of  life, I'd be good to go........

(smile)

Disabled Worship

Worship is prayer

that moves

that soothes

It is seeking

feeling

hearing

Embodying trust

and forgiveness

Calling us to abandon all that hinders

So that we are healed

So that we are hopeful

So that we love

Worship lifts us

Swiftly

Powerfully

Calling us to run to places unknown

Allowing us to live out dreams never forgotten

Worship is music

with a beat that is invigorating

it is the silence

that only we can hear

It's amazement

and wonder

It stirs the soul

leaving a longing for more

It revives

It rekindles

Giving off energy that cannot be contained

And must be shared

It is the freedom

to dance

It is the miraculous ability

to see God's power

as brighter than the sun

Giving strength beyond weakness

Giving courage despite fear

~

As I stand there in church during worship I watch them

I see that in them

Those whose arms can't be lifted

are raised to Him

Those whose legs do not move

are dancing for Him

Those whose voices have not tune

have melody

and though they can't read the words

they sing with Him

Those who don't understand religion

know God

And I

I stand there with arms I can raise

but don't

I stand there with legs that can take me to the altar

but don't

I can read the words

but yet I do not sing

I stand there moved

Yet remain still

Disabled

~ ~ ~

Written by Michelle M. Guppy

in tribute to the children, youth, and adults of the JOY Ministry of Graceview Baptist Church -

who know what true worship is....

(The JOY Ministry is a disability ministry)

The story I hear...

He gazes ever so peacefully at the water

Calmed by its movement

Tranquil

I smile at him

Amazed

And think of all the people he's touched

Hope he's given

Scriptures he's lived

Laughter he's brought

Lessons he's taught

Tears he's shared

Anger he's tamed

Pain he's endured

Obstacles he's overcome

His complexity of need reminding me to be content with what I have

His timelessness of a moment mocking my pursuit of more time in a day

His imperfections humbling my perception of perfect

His ignorance challenging me to redefine what intelligence is

The grudges he does not know how to hold

The decit he does not know how to contrive

The ugliness he cannot differentiate from beauty

The black he does not know from white

The insecurities he does not understand he should have

The academic achievement he doesn't feel a failure for not possessing

The career he isn't ashamed of not having to make him feel worthy

I watch him in wonder at his wisdom

Jealously

Enviously

He understands the music of life

He's moved by its rhythm

He dances to its melody

Unashamed

Unhindered

Unbridled

I watch

I listen

His eyes sparkle

As his soul sings out

His story

The story I hear

From the child

Who has never spoken

Written by Michelle M. Guppy

Can you be a Bible-belt church and not be buckled-in to the word of God?

There was a shocking statistic linked to an article on one of my Facebook friend's pages a few days ago about the number of people who have disabilities who are not being served by a church.  
So shocking was the statistic that I can't even remember it, nor did I think to save it to share here.

But trust me, it was shocking.

One of my good advocate-friends Clay shared this personal commentary about that issue as well:

"OK, let's get to the point: Texas has more folks sitting in church pews yet less community support per capita for people w/disabilities than any other state. This is in direct conflict with the bible and someone with an M.Div should... care. There's grant money available to get a discussion going. Ready, get set...GO!

Another of my Facebook friends Marty, replied to Clay's thoughts along the lines of:  It shouldn't take someone with a M. Div to figure that out...

Ok, I'll go......


Clay, Marty, --  I agree.

While my thoughts usually more resemble the "far side" of things, I think that the issue goes even before that. 

Before being a Christian in the church, and waaayyyy before becoming a Pastor or Master of anything in life.

That problem begins with each of us as parents.

As parents (and before autism I was included in that bunch too) we scrutinize every toy our children play with for chemical or choking hazards, we scour every food ingredient on the ingredients list to make sure it's pure and wholesome, and we make our children say 'please' and 'thank you,' be obedient to our authority, and not throw fits in public.

All things we should do for their health & safety and for the benefit of them growing up to be responsible members of society.

But yet we turn away when on the playground those very same children ignore those with disabilities, stare at them unknowingly, thus creating that atmosphere of exclusion.

Simply because as adults we're not quite so sure what to do either.

We put our kids in the best pre-schools because we want them to be with the best.  If we are white middle-to-upper class --- can we really say we would seek out pre-schools of all black or other minority children?  Even if they're just as prestigious?

As if Dr. Seuss reads any different to a poor child, or a child with a disability, than it does for a middle-class white child without any disability.


My answer would have been no. 

Not because I did it on purpose, but because we just don't think about that.

We go with what we know... and with who society says belongs or doesn't belong.

I actually think Sesame Street is to blame for this.

Remember this song?

One of these things is not like the others, One of these things just doesn't belong, ...

We teach our children from an early age to pick out that which isn't the same, doesn't belong.

And unfortunately, that has translated to people.

We put our children, with children like our own children.

From pre-schools to play-groups.

We do that for our children - and they grow up to be the people in the church who say that the homeless, poor, minority, or disabled are not who we as a church need to "focus on" reaching, teaching, and ministering to.

As if they don't need to hear about who Jesus is too....

As mommies arranging playdates for our kids, do we seek out and invite children who can't walk? Can't see? Are different ethnicities than ours?

Or gasp, do we take our children to the homeless shelters to have a play-date with the children there?

Watching the movie, The Boy in the Striped Pajamas was a must see for me.  It truly opened my eyes as to how innocent children are about their differences, until someone tells them about their differences.

This topic hit home personally to me a few weeks back.  I get church e-newsletters from some different churches we had visited or who had programs my son liked, I liked, etc.

I was looking at some upcoming classes at one, and hit the 'contact' e-mail to inquire about one such program.  

I explained that I had a sixteen year-old son with autism and if they had any program for him while I was in the class.

The response was basically that serving that population was not their focus.  Wasn't where they felt God leading them, or their resources.

That made me chuckle, though it was far from funny.

Chuckle that even me, a Bible-scripture dunce compared to most at my church, could even 'get' how wrong that statement had to be.

How in the world could this church, this leadership in this church, right here in the middle of the Bible-belt, be so NOT buckled into the actual intent of God's word?

How can serving people in your own backyard, NOT be a focus?  Not be worthy of your resources?

But yet their words, and the words of so many other churches, are exactly that.

I guess we think someone else will serve them.

Well trust me on this leaders in the church, no one else is.

A church planted downtown had best not be there to serve only those wealthy executives who make the church possible, but those on the streets who maybe think that a God who could save them, love them, reform them, - is impossible. 

A church planted where there are poor, elderly, those with disabilities, - has the responsibility to serve them, resources or no resources, as well as all whom God put in their community. 

For us as Christians in a church and church leaders to say that we don't serve a particular population because 'it's not our focus' -- is just plain wrong.

Again, I'm not a Bible scholar, but it seems to me that the stories I remember, were of Jesus helping the poor, the sick, those with disabilities, widows, adulterers, etc....

I don't remember many stories of Jesus helping someone who was perfect.

I don't ever remember reading in the Bible how much money it took for Jesus to perform a miracle in someone's life either.

How much it hurt his budget to heal those who couldn't pay.

And I don't remember stories in the Bible where Jesus or the Disciples were sued for damages or liable for injuries, etc.

More excuses I often hear for not pursuing programs.

Did Jesus not heal the paralytic lowered through tiles on the roof because he wasn't sure if insurance covered that?

Did the people who lowered that paralytic not do it because they might be sued for roof tile damages?

I think in the church today, we have hindered ourselves helpless in that respect.

It's not about who we can help, it's about how cost effective it is to help them.

It's about whether we'll be sued trying.

Which in my far-side view, makes us just as pathetic as raising our kids to 'don't stare, it's not polite' -- while not ever taking that step in the Jordan river to know just who it is we're not to stare at.

And whether or not they know Jesus Christ as their Lord and Savior.


I'm so proud to be a part of a church has it's belt buckle buckled tightly in the word of God.


Michelle M. Guppy

Living life on the crazy side of autism....

Why yes, that is my husband in that picture above, sitting on a statue of a lion. 

The lion that is sitting on a stadium roof. 

The stadium roof of his alma mater.

In the dark of night.

For security purposes, I won't say what university, and if that picture should fall into the hands of police/campus security, I will plead 'photo shop'.

While that picture does represent breaking & entering, (and, er, riding) it also represents our life with autism.

This life with autism that makes us do crazy things.

Things like making voo-doo dolls of politicians who vote against reducing waiting lists for services.

Things like packing up your child and driving 2.5 hours or more to another city, or state,  while giving them mirilax for an endoscopy the next day, not realizing what exactly you would do during that 2.5 hour drive if that laxative starts to take effect before you get to the hotel.

Things like traveling across the country with not a spare dime to your name, to Washington, D.C., to attend a rally because it's just that important for the cause to do so.

Things like taking a stand and challenging a decades-old flawed medical policy of vaccinations, and not backing down when the entire establishment, and a few of your friends, call you crazy.

Things like taking your severely affected child with autism to the grocery store with you, without calling the national guard for standby back-up should said child have a sensory meltdown in the middle of the main aisle; having flopped to the floor with you not being able to get him up...

Things like having the last name of 'Guppy' and having your house flooded five times due to the little guppy's autistic-affinity for turning on sink faucets and not turning them off.

Yes, if you're the mom of a child with autism who didn't start out crazy; have no fear, life with autism will ensure that you finish the journey crazy.

And that's not such a bad thing.

Actually it's been quite a blessing for our fishy family of four.  Er, five if you count the dog.

The craziness of our life with autism has made us realize what is truly sane in this world.

God.

It's given our typical teenage son a maturity to handle things most of his peers will never experience.

Like the few times that Matt has had to call 911 during one of his brothers seizures where he stopped breathing for a bit.

It's also made him see life as anything but typical.

Like realizing he can win a bet when he's in line with his friends to get their class schedule, and the school nurse tells him that he's behind on vaccinations so he can't get his schedule until his mom brings proof of vaccination.

To which he replies to her politely, "Let's just call my mom about that"....

After which he has his class schedule and $5 to boot.

As I've said before, our typical son is one of the few people who was actually not lying when he told his teacher that his brother ate his homework.

The times we've gone out in public to escape the craziness of the confines of our four walls, we were a family so finely tuned to Brandon's high-pitched shrieks and humm's,  that we've never had to worry about losing Matt (or each other) in the mall when he was young. 

Like a fish to sonar, all we have to do is follow the humming of Brandon to find the home base.  Home base being whichever of us is with Brandon.

I've been to church with my shirt on inside out, to Wal-Mart with peanut butter hand prints on my butt, looked the other way at the grocery store when he launched a glass jar of grape jelly from the cart, and have chased a butt-naked boy down the street.  All in the name of living on the crazy side of autism.

When someone mentions a ski trip to Colorado, what we picture in our head is the time Todd came home from work and slipped on a pile of poop on the entryway tile.

(Poop that didn't come from the dog I might add.)

That's the only ski trip we have time to take around here....

As a beating-the-odds crazy, chaotic married couple raising two boys, one of which has autism, - my husband and I have survived the monotonous, lonely, suffocating entrapment that life with autism sometimes is when you have no respite opportunities.

So it's no wonder that when we're finally set free now and then, we well, -- go crazy.

Like my husband on vacation who climbed over a fence, onto a stadium roof, to sit on a statue of a lion in the middle of the night while his accomplice son took the picture.

Yes officer, that is my husband, - and son. 

Yes officer, they do plead insanity.

Yes officer, they do want to stay in jail, and if you don't mind, could I spend the night here too?

We don't get many opportunities to do things together, it'll be like a family vacation.

You see, we live life on the crazy side of autism...

And we wouldn't have it any other way.

The unwritten rules of autism-mommyhood...

I don't mind having a child with autism. 

I wouldn't have asked to be such a mommy, but then one rarely asks for anything unpleasant or hard in life.

Like an enema.

Ok not so much.

So while I marvel at the miraculous moments I've experienced on this journey with autism, -- I admit that I have shared with God now and then about some things he could have better provided for.

I'm sure he took notes...

For one, to allow me to have had an olfactory dysfunction.  Or in laymen's terms, that what would normally smell bad, would smell like roses to me.  That would have come in handy.  Often.   One would think that after sixteen years now of dealing with leaky-gut issues, I would have developed one naturally.  But alas, not.

That when your husband and only other male creature in the house are not in the house, no Texas-sized gargantuan cockroaches would ever come in the house.  That's just wrong.  It happened to me this week with all the rain outside while my husband and typical teenage son were 600 miles away.  The poor thing was seeking higher ground.  The only other male in the house other than my son with autism, was my labrador retriever.  The cockroach was crawling in the entryway.  I was following it, pointing at it, and quacking like a duck trying to get my labrador interested in the hunt and subsequent pouncing to death.  I mean really, the cockroach had to be the size of a baby duck as well.  But no.  He was not to be fooled.  All the blasted dog did was sniff at it, look at me like I've gone quackers myself, then jumped on the couch to lay down.

I suppose it would be out of the question to ask my son's school to do a social story about "See cockroach", "Step on cockroach", "Sanitarily dispose of cockroach...."

I know...

And truly, when a mommy of a child who has a disability is anywhere where there is no quick escape, they really should have the ability to only hear 'blah, blah, blah' when a mommy of a typical child is going on and on about how their children fight with each other, won't go to bed because they're giggling, won first place in the baseball tournament, or are complaining about a sick child with a cold and they had to stay home with them and miss work.  Things us mommy's would kill for.  I mean truly, that would cut down on alot of unsolved drive by shootings.  At least in terms of 'if looks could kill'....

And last in a list of things that could fill ten pages, is that we get one stress-free personal wish granted.  Whether it's stomach muscles as smooth & strong as steel, glutes of granite, or boobs like barbie.  Just one thing that's perfect & stress-free always.

For me, it would be my haircolor.

I've gone to three different places this week just to fix what the first one didn't do quite right.

Why is it that I can explain the methionine/glutathione transsulfuration pathway to a parent, but can't seem to make my haircolor person understand that I want blonde highlights to cover my gray, and not nuclear bomb explosion white.

I even bring pictures to illustrate.


Oh well, I guess the reason we must deal with all those things and so much more, is because simply being the mommy of a child with a disability -- means that we can handle that, and anything that goes with it.

It means we're strongest when we feel our weakest.
It means we stay and conquer when exhaustion makes us want to leave and surrender.
It means we laugh when we want to just cry.
It means we color our child's world beautiful faster than the world can paint it ugly.

It means that if you're ever lost in a dark tunnel, call me; the glow from my hair will guide you out.

And like in Isaiah 40:31, it means that 'but those who hope in the LORD will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.'

Ah yes, soaring on wings like eagles.

But for me, it will be a flight on Continential Airlines.

My husband comes home from a week of vacation soon, and right after that I will be running out the door to Georgia for my week of vacation....

Leaving him to find what pair of his shoes I smashed the cockroach with.