Autism doesn't care....but God does.

This week has been one of the more frustrating weeks of autism I've had.  I guess because I've once again fallen in the trap of planning what I'd like to do.  Namely getting myself more fit -- strengthening my aging back for the long haul.  Each darned week has been met with obstacle after obstacle, namely Brandon having seizures or being in bed recovering from them, on the few days a week lap swimming is late enough for me to get there, because of course Brandon is late to school most of the days he can even go to school. 

Today the final blow to my frustration was reading about the lack of inclusion of ABA therapy in the new health reform plan.  ABA therapy, the only thing that has taught Brandon what he knows.  The only thing that has helped him become as independent in daily living skills as he is.  Not public school, not medicine, not drugs, - but ABA.

So why of course it would make sense that the only thing that helps my son, would be in danger of being taken away.

I'd like to have the luxury of thinking positive in that each state will do the right thing and include it still.  I really, truly would...  But autism doesn't have the track record to justify such wishful thinking.

Some days autism is too unbearable.

Today was such a day.

Autism didn't care that it kept Brandon in bed most of this week and that today was the last chance for me to get to the pool.  It didn't care that by 10:30am I was still trying to get Brandon fed and dressed, let alone on the way to school so I could get in what little swimming I could before it closed at 12:30. 

Autism didn't care that I was in a hurry because it is never in a hurry.  It goes on merrily at its own pace, not caring what you need to do, where you want to be.

It doesn't hurry for anyone and it waits for no one.

It didn't care about the mood I was in when I finally arrived with only 40 minutes to do the hour and half worth of therapy and strengthening my back so desperately needed from having had to miss most of the week.

It didn't care that when the lifeguard cheerfully asked me why I come swim - for recreation or for a workout --- that I could only blurt out - "for survival."

Yes, today I was reminded so blatantly of how little autism cares. 

Autism, the diagnosis.

It could care less what your dreams were as a pregnant mom.  It could care less that you had one child, and the child you were pregnant with would complete the perfect picture of having siblings laughing and giggling late in the night.  Fighting and practical joking each other.  It could care less that when it took your child, there might not ever be any getting them totally back.  Oh, there would be years of valiant attempts that got you closer, but for so many, it won't be a total rescue. 

It doesn't care that as the warrior mom you have become, no matter how many battles you fought, won, or lost, you will still have to keep fighting for recovery.  It will welcome that.  It doesn't even care that it will make you die trying to recover your son.  It will welcome that too.  And not only does it welcome that, it will help that time come sooner than planned with the toll it takes on a body.

Autism doesn't care that sometimes you are simply tired of fighting and want to quit.

Autism never gets tired and never quits.

It has no need to eat, rest, nor sleep.

Autism doesn't care that you'd like a coffee break, day off, vacation, or Girl's Night Out.

It needs none of those things.

Autism doesn't care that the only advice given to so many mom's in the doctor's office with that shiny new diagnosis will be to "love them, they'll end up in an institution."  Autism doesn't care that most will believe that and miss a whole world of possibilities and treatments and hope.  Autism doesn't care that those who do know what to try will spend their life's savings on those treatments and have nothing for a rainy day, college for any typical children, vacations, or retirement.

Autism doesn't care how much you've spent, it will only cause you to have to spend even more.

Autism doesn't care how many lies it's told, it will only tell more.

Autism doesn't care that there's no insurance coverage for most and it doesn't care about the very real possibility that what coverage there is, might be taken away.  It doesn't care about the unfairness in how those who create their own health issues can get all the coverage they want, while those who did what the government said to do in vaccinating their children, -- have no coverage for those myriad of damages.

Autism doesn't care that most insurance only covers therapies for 30, 60, or 90 days and your child's need for therapy is lifelong.

Autism simply doesn't care. 

It doesn't care if you have no respite, no place to worship with your child, and no school fit to educate your child properly.

It doesn't care if you are tired, broke, and broken.  It doesn't care how long or how hard you've fought for your child, against discrimination, for coverage, -- it will reward you with only the need to fight longer and harder and with no reinforcements, few victories, and no medals of honor for the diligence in how you fought nor how many odds or enemies you fought against.

It will simply leave you bloodied on the battlefield thinking how you could have possibly fought harder.  Or stunned by the horrid realization of how you could have avoided the need to fight in the first place....

It doesn't care how much it hurts your child, and it certainly doesn't care how deeply it pierces your heart.  It doesn't care how it destroys marriages, dreams, families, and futures.

It doesn't care how it alienates your friends so that you find the ones you had dwindling faster than your bank account.  It doesn't care how it leaves you no time for the friends you do still have.

It doesn't care that it made you have to quit your job, miss meetings, or workouts at the gym so you can stay in shape to outwit and outlast your opponent called autism.

It doesn't care that it made you live a life of tag-teaming where one parent stayed home with the child with autism while the other went to swim meets and track meets with the typical child.

Family vacations included.

It doesn't even care that in so many ways it made you miss your typical son's childhood.

Autism doesn't care how many milestones it might steal.  Little League.  Pretend.  Birthday Parties.  First dance.  First kiss.  Drivers license.  Prom.  Graduation.  College.   Marriage.   Parenthood.

It doesn't care how many of its Mom's might not ever become Grandma's.

It doesn't care that you have to endure the petty complaints of those around you who can't handle but the simplest of one-time paperwork hassles or petty mishaps when you've had nothing but a lifetime of paperwork and true hardships since autism.

It doesn't care that you have to battle envying those around you whose children have curable illnesses or illnesses that still allow them to live a somewhat typical life because they can still read, write, talk, do, understand....  All things that your child cannot do.

It doesn't care how much jealousy you have for those who can just walk into a treatment facility and get all they need to get better and owe nothing but a co-pay or deductible; while you have to say no to a doctor who might be able to help your child, but you can't afford to pursue that.

It doesn't care how rotten and guilty it makes a mom feel for even thinking those things.

Autism doesn't care if you'd like spontaneous back.  Just the ability to pick up your purse and go somewhere.

It doesn't care if you'd like to finish a conversation, start and finish a project, or simply take a nap on a Sunday afternoon.

It doesn't care if you're tired of humming or going room to room turning off lights that are incessantly turned on.  It doesn't care how many times you've rammed your forehead in a locked door because you forgot it was locked. 

Autism doesn't care that you must live behind constantly locked doors and it especially doesn't care if you've accidentally left one unlocked and your child wandered off a few blocks away before you even knew he was gone.  Autism doesn't care about the sheer panic in that.  Autism doesn't care how fast your child is.  It will only make them faster.

Autism doesn't care that there's no place for your child to go for recreation on the weekend nor respite for you.

It doesn't even care that your child has no friends.

It doesn't care that there's no appropriate provision of care for your adult past school or your death.

It doesn't care how much shame society stares you down with in the store and how lame and inconsiderate the comments are that are hurled at you during a meltdown. 

It doesn't care how angry, hurt, betrayed, bewildered or belittled you are.

It doesn't care how bullied your child is.

It doesn't care how many prayers you've prayed nor how many tears you've cried.

Autism simply doesn't care.

~ ~ ~ ~ ~ ~ ~ ~

But God does.

God cares for my son.

He gives new dreams for He knows the plans He has for him.  Plans to prosper him, plans for a hope and future for him.

God does care that your child was taken and has given you a fighting spirit and the will power to go to infinity and beyond to find him and help get him back.  He's given you the bravery and courage to fight any battle you must fight and the endurance to fight as long as you must fight.

And He cares enough that when you say you can fight no more, he will fight for you.

God does care that you can't afford autism and He somehow provides by teaching us that it's people we must invest in, not things.  Lives, not livelihood.

God does care about all the "cant's" "wont's" and "never's" you are told and in return He gives you promises of "I can" "I will" and "Miracles."

He never takes away, He only gives.

He cares that you feel discouraged, and He sends encourager's.

He cares that you fear death, and reminds you how He overcame death.

He cares that you feel so very alone, and so He promises to be with you always.

He cares that you need escape but can't, and so He invites you to come into His presence.  Anytime, anywhere, for any reason.  If only in thought.  If only on a Sunday.

He cares that you are weary and broken.  And He promises you will not faint but soar on wings of eagles.  He is the potter who will pick up your pieces and make an even more beautiful vessel with them.

He levels all odds on the battlefield because those who fight in his name will have victory.

If not sooner, then certainly later.

God cares about truth and brings justice.

God cares about marriages, dreams, and families; and those who cling to him have a cord that is not easily broken.

God does care that you don't have time to be the kind of friend you want to be.  That's why He sends you friends who understand that because they too don't have time to be the kind of friend they want to be either.

God does care that you've missed out on so much family time all together, that's why he helped you understand how to better value the time you do have together.

God cares about your hurt, disappointment, injustice.  He too has faced those things. 

God cares about the pain your child is in.  His son went through such pain too.

He too, wept.

God does understand your feelings of the flesh, and he forgives.

God cares about all the milestones in your son that were forsaken.  As his son's very life, was forsaken.

And he promises to give back what was taken.

God does care that you are tired.  He will give you rest.

God cares that your child has no friends. He says that He will be a friend closer than a brother.

God does care how many times you've felt defeated and He will give your child victories at just the right times that will encourage you and remind you of why it is you are fighting so hard in the first place.

God cares about the prayers you pray, so much so that sometimes he uses them to heal what's wrong in you first, before what needs to be healed in your child.

God cares that you are frustrated and in a hurry for answers, and He reassures that there is a time for everything.

Most importantly God cares about the tears you cry.

Much like how Spring rain grows flowers -

He uses your tears to grow HOPEISM.

And it is HOPEISM -

That heals.

I'll Stand

2012 has brought many personal motto's into play in my life.... Phrases that motivate me, remind me, get me back on track, inspire me.....

Choosing Happy...
Living Joyfully...
Following Christ...
Wearing Camo.

HOPEISM........

HOOYAH!

Ones that make me laugh and lighten the load that at times is way too heavy ---  are where I refer to myself as a Stark-Raving-Mad-Laughing-Lunatic who loves the Lord.

What sometimes describes my "Life with Autism" best -- is that I live life on the edge of crazy yet not too far from sane.

Crazy, mad, wonderful - is a reflection of how each day goes down around here!

But in all those words that I love -- perhaps these two are what truly say it all:

I'll Stand.

For my own personal Christian journey -- there's really no other two words that are so action-packed. 

Isaiah 6:8
Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us?" And I said, "Here am I. Send me!"

I like to think Isaiah stood up and raised his hand high when he answered.  I'm not sure if I was Mary I would have stood up and volunteered to be an unwed, pregnant woman.  I'm not sure if I was Isaiah I would have stood up and volunteered to live "Life with Autism".  Sometimes you are chosen and then have the choice to stand up and conquer or turn around and run away.

Each and every morning when I come to my computer searching for that elusive autism cure or treatment that I'm sure will be there, I am choosing to stand.

Each and every seizure that knocks my son to the ground, I choose to not stay there, but rather to somehow find a way to stand.

Each and every day that the burden of injustice and oppression from the medical and vaccine and drug industry weighs heavier and heavier, I find a way to do my part to chip away at it, and stand.

Some days, by the very end of it, all I can say that I accomplished was that I somehow managed to remain standing.

Or that I stood up more times than I was knocked down.

For the past couple years my faith has not been lived out sitting in a pew at church, but rather in my little internet corner of the world answering e-mails and giving hope.  Posting things my son has inspired in me, to hopefully encourage and inspire others.

When you live by "I'll Stand" it means that you do what you can, where you can, and as often as you can.

I've missed more appointments than I've attended due to autism.  I've not answered more e-mails than I've answered due to autism.  I've had more medical treatment and testing disappointments than I'm sure anyone has ever had - in still having no clues or help for my son's seizures.

But I've not let that defeat me -- I've done what I could, when I could, where I could, as often as I could.

And so when my friend Tonya Frye posted pictures that Jenifer Weeks took of her family, and one in particular where they were all in a long line holding hands ---  I instantly thought of an image that describes my own family -- and our faith.

All of us in a line holding hands --- standing tall with arms raised.

I asked Jenifer Weeks if she would take such a picture for me.

I wanted that visual picture of the faith our family has -- Todd, Matthew, Brandon, myself -- our faith forged from hardship.  From going through the heat of hell without being scorched in the process.  Each of us together have endured some things that would cause many to crumble to the ground.  But because of our faith, our family, we have each remained standing.

Someone asked me why have her take the picture from behind. No, it wasn't to show off my rump that could stand to lose the three sizes that the Grinch's heart grew.

But rather to illustrate that it is not by my might, but God's.

It's not our Glory we want anyone to see -- it's God's.

I don't want anyone to think that anything good or inspirational that I wrote or have written was because of me; but  because of God's impact in my life.

When you live life like that, it's not "you" that people see, it's God.

That's what I so desire.

If I'm considered any kind of leader, I want it to be the kind that leads someone to the God I follow.

That's what this picture represents.

That though imperfectly at times, we have stood with arms high and heart abandoned.  That even through any defeat we must face in the coming year, we will still remain standing with arms high and heart abandoned.

In awe of the one who gave it all.

All we are is His.

And that's all I want anyone to see.



Click here to listen to "The Stand" by Michael W. Smith

I'll stand with arms high and heart abandoned
In awe of the one who gave it all
I'll stand, my soul Lord to You surrender
All I am is Yours
I'll stand with arms high and heart abandoned
In awe of the one who gave it all
I'll stand, my soul Lord to You surrendered
All I am is Yours
I'll stand with arms high and heart abandoned
In awe of the one who gave it all
I'll stand, my soul, Lord, to You surrendered
All I am is Yours
I'll stand with arms high and heart abandoned
In awe of the one who gave it all
I'll stand, my soul, Lord, to You surrendered
All I am is Yours
I'll stand with arms high and heart abandoned
In awe of the one who gave it all
I'll stand, my soul, Lord, to You surrendered
All I am, all I am is Yours
I'll stand,
I'll stand with arms high and heart abandoned
In awe of the one who gave it all
I'll stand, my soul, Lord, to You surrendered
All I am is Yours

Michael W. Smith, The Stand

Of Planes, Prayers, & Perfect Smiles

This Christmas will definitely be one that is most remembered.

Though perhaps not by the world's standards of the perfect Christmas party, the perfectly color-coordinated Christmas decorations, or even the perfect Christmas gifts.

But simply by "The Commercialism that didn't steal our Christmas."

Of Planes....
We didn't get to have Christmas on Christmas Day with our Navy-son once again, due to.... him being in the Navy and not getting to come home Christmas Day.  But rather a week later.  And thanks to the teamwork of some airline ticket clerks, we did get to see him a day earlier than expected.  As any Military mom knows -- that's to 'infinity and beyond' priceless extra time.  My son had volunteered above and beyond at work, and so his command officer gave whoever did that an extra day leave.  So bright and early the day before their original take-off date, he and his Navy-wife show up at the airport to hopefully get a stand-by ticket on a flight.  It's not policy to issue stand-by tickets on a flight that's not the same day as the ticket you bought -- but who can resist a handsome man in Navy Camo, right?   The clerk said she could get them on the 4pm flight.  He said, "Ma'am, we'd really like to try and make that 1pm flight...."  She said there was no way, it was already boarding...

She obviously did not know the kind of life my son grew up in.  Where the impossible was made possible each and every day.  In what training path he pursues in the Navy, the times he had to defy the impossible each and every day.  In having a little brother defy the potential of death with each fall from seizures.  In having parents who have defied the odds of divorce from the stress of caring for a child with a disability with each Anniversary celebrated.  In having a mother who never accepted "He can't" - "He won't ever" - "We can't cover that" - "We can't provide that..."  In having a father who exemplifies that "Never Quit" spirit in doing the best he can in a very demanding and at times trying career.

Needless to say, as the gate door was closing, my son and his wife boarded that 1pm "No way you'll make it" flight.

Our first Christmas blessing is to those who go a bit above and stretch policies a bit beyond in helping those in uniform get home to their families for Christmas.  No matter how belated that must be.  And to my son who will forever and with all he has, defy the "No Way's" of life.

Of Prayers...

We are blessed to have three generations of "Team Guppy" here with us for our Christmas celebration.  My husband's parents, Gary & Mary Ann Guppy make up "Team Guppy 1.0".  Todd & I are "Team Guppy 2.0".  Matt & Tiff are the newlywed "Team Guppy 3.0".   In the mornings Todd's parents read a devotional and pray together.  One morning I was upstairs having my coffee while I wake up, Todd was in his office checking on things at work since he's been on vacation, and I heard "Team Guppy 1.0" reading out loud.  I stopped what I was doing and listened to them taking turns reading from Oswald Chambers.  Something about the moment drew me to join them. I stopped by Todd's office and we both went in to where they were reading and just stood there watching them, listening to them reading out loud God's word.  While they were reading and we were listening, I was thinking about how that is the stuff legacies are made of.  What families should be made of.  All together, all drawn to God.  In prayer.  I thought how so very many things that ail the family in this day and age, could be healed by this very act of togetherness in God's word.  It felt wrong, but I knew I had to take a picture to capture the moment.

When they were done reading they looked up and saw us standing there.  They explained that they do that each morning with few exceptions.  And that they pray together after that.  And they asked us to join them.  And we did.  And we will for the rest of the time they are here....

Our second Christmas blessing is for their example of "The Family that Prays together, stays together."

And thus can get through anything.

Of Perfect Smiles....

Christmas Eve Brandon had a seizure...  We had plans to go to my brothers Christmas Day and thought all would be lost because of that seizure.  But Christmas Day came and while wobbly, Brandon could still walk and so off to his house we went for our traditional Christmas breakfast and opening of Santa gifts there.  Brandon laid down on the couch most of the time and then in the sweetest of moments in the middle of gifts being opened, wrapping paper thrown about, -- the biggest smile erupted from Brandon's solemn, expressionless face.  One of the biggest smiles I've seen in such a long time. 

It's not lost on me that all this occurred in the middle of a mound of worldly gifts where watching the madness I was feeling like 'Cindy Lou Who' in The Grinch Who Stole Christmas wondering if this is what Christmas is all about --- opening things, things, and more things.  Pouting because you didn't get as many things as someone else.  Complaining because you got the wrong things.  And then that answer from God.  That smile that reminded me what Christmas is all about.  Something that can't be bought.  Wrapped.  Opened.  But rather, Given.  Experienced.  Accepted.  Brandon's smile outshone everything in that room that symbolized Christmas.  It was more perfect than the most perfect of gifts.  That fleeting moment was my "Mary & the Manger" moment.  His smile the Christmas Star that answered for me the question of what Christmas is all about.  The simple humbleness of a special moment that reminded me of another special moment so very long ago on that first Christmas Day.  Those moments, those memories, that love, -- is what Christmas is all about.

It was also not lost on me the shirt he is wearing in that picture.  Our family's new motto:  NDCQ.  Not Dead Can't Quit.  Where in our "Life with Autism" that has brought us such darkness of defeat -- those fleeting, momentary smiles that bring such light and help us refocus and find our way to renewed faith time and time again.

Our third Christmas blessing is simply the thankfulness of Brandon and how he reminds me each and every Christmas season to do my best to make Christmas more about the "Manger Moments" than what money can buy.

My Grown Up Christmas Wish...

My local Christian radio station, KSBJ, is asking for letters mailed to them about what your "Grown Up Christmas List" is.

I've thought about it quite often - just about every day of the year really. From last Fall until this Fall, all I wanted for Christmas was my son's two front teeth. Literally. Seizures took them, twice. One all but a sliver, the other fared much better. Just a chunk missing. It was really sad that if my son were a typical boy, I wouldn't have had to wait that long. I wouldn't have had to place him on a year-long waiting list because too few dentist's choose to specialize in a population of children, youth, and adults who have unique needs and require general anesthesia.

So needless to say, my "Grown Up Christmas List" centers around him. My sweet son who is now an adult who is non-verbal, significantly affected by autism, gastrointestinal disease, and seizures.

I want for him a medical doctor in a typical medical center who will leave me speechless by how much they know about the biomedical treatment of vaccine induced autism; not by what they won't even consider in how vaccine injury caused all the biomedical disorders I came to seeking treatment for.

I want for him to not be in pain, and when he is, to be able to tell me where.

I want to know how to fix that pain.

I want Physicians to go back to where they practice medicine, and don't prescribe it.

I want Pharma to stop poisoning our children. Drugging them. Making them customers for life.

I want the Government to stop mandating vaccinations, and instead mandate GMO-labeling. Heck - what I really want is no more GMO's.

I want Politicians to remember that they work for us peasants, not the Kings. That they should be speaking for those who can't speak for themselves -- by listening to those who know them best --- the ones who love them, care for them. Fight for them. Would die for them.

I want for him all the Christmases past that he missed because he would rather be alone in his room banging his head against the wall. All the untouched presents opened & played with that he could care less about because it was only the ribbon that he wanted to flap over and over. All the classroom parties that he could not be a part of because it was just too much of a sensory overload.  All the friendships he never had because he didn't know how to play what they wanted to play.

All the Santa pictures we missed because his imagination was taken away along with his health and he could not understand who Santa was or why I was trying unsuccessfully to make him sit on his lap.

All the letters to Santa he could not write.

I want for him Christmas present where he can for once take part. Seizure-free. Leaky-gut free. Pain-free. I want him to have the vision of sugar plums. I want him to not be able to sleep in anticipation of Christmas Day. I want him to watch The Nativity Story with me and make fun of me when I cry.  I want him to take part in telling stories at dinner and playing games after dessert.

I want to see him fight his big brother for the last roll.

I want for him a Christmas future that doesn't scare the hell out of me. One where I can die peacefully knowing that someone will be there to make his GFCFSF Gravy. Buy him Christmas Candy he can eat. Include him in their celebration no matter the chaos. Who will check him many times a night to make sure he's dry, clean, breathing.

For my Grown Up Christmas List, if I can't have for him a Driver's License, Prom, College, Marriage, or Children of his own, then I want for him to be treated with dignity, respect. To be loved as a person and not just cared for as a client. To feel safe. To not be abused, neglected, maimed, or murdered in some dark corner of an institution. To have a home in his community with his friends. To not be alone. To be valued. Seen as worthy. To live, laugh, continue to learn. To be free. Have choices. He likes long baths, not quick showers. He loves to be outside on a trampoline, not inside drugged up and made to sit in front of a television.

I fight for these things on my Grown Up Christmas List each and every day, so I suppose the last thing on my list would be to not have to fight for them anymore...

For it to just be.

Among all these things I wish for - there are two things I'm most thankful I don't have to wish for... 

Unconditional love.

This season, more than any other, is about love. The unconditional love Christ has for us. And for those who see that as something far too distant, there are people like my son who are unconditional love on earth. They don't see race, color, gender, religion. Democrat or Republican. They don't do deceit, lies, hate, or bullying. They simply do love. Unconditional love. The one thing people in this world crave, is possessed by those they turn away or don't take the time to know.

Christmas Spirit from within.

Brandon has taught me that no matter what age you are, you can still have that childlike innocence of not being embarrassed to admit that you love to read "Twas the Night before Christmas." I won't ever think I'm too old to believe in Santa or too smart or prideful to not believe it possible that at Christmas so very long ago in a stable, a Virgin gave Birth to a Savior who would be called "Emmanuel -- God is with us."

Thanks to Brandon I'll always hear the Christmas Bell ringing, where if there were a word to put with that sound, for me it would be -

HOPEISM.

 Long ring the bells of Hopeism.........
 

An answer no one really wants to hear...

For those who have ever prayed for a family like ours and wondered what you could do for them ---

I received a beautiful card from a facebook friend who had been reading about our difficult times with our son's seizures.  In the card that person shared that they knew we most likely had needs not being met and asked how could they help. 

First of all - don't anyone ever think it's not worth the time and effort to send someone a card or handwritten note.  I don't know about anyone else - but for me it is such a blessing to open a card or letter.  Pure, simple, joy.  In my mailbox I get nothing but junk ads and junk mail and bills.  On my desk is paperwork -- forms to fill out to get nothing in return, printed out research abstracts for my leisurely reading, EOB's to sort through and when need be, appeal letters to begin writing.

Oh, the simple joy of a simple card addressed to me, not "occupant", not "guardian of", to open once in a while to break the monotony.

In the card was a very heartfelt sharing of how much that person cares for us and our struggles. 

Then there it was, that question.....

The very genuine question asking how they could possibly help us.

Unfortunately at times I'm a very impulsive person. I knew what my answer would be the minute I read the question.  But I tried to wait for a while.  Put the question down and walk away...  See if my answer would change after thought and reflection.  Seek the Lord's grace to overtake my lack of gracefulness.

I'm not sure what that says about my Christian walk, but after seeking heavenly grace I found the same human graceless answer a week later as I had the moment I read the question.  I guess why the truth is so absent in our world today, is because it's not glamorous.  It's not the popular answer.  It's often more blunt than graceful. 

My answer is that prayer is always appreciated.  Receiving a card that someone is praying for you, even better. 

Many families like mine are on such restricted diets, that cooking a meal for them isn't really that helpful.  There are too many things we can't have.

We love to do our own yard work, repair work, etc.  It's sometimes our only diversion in our life with autism -- to get to do something normal people do.  When we can.

What we really need, and I think I speak for many, is respite.  So often the people asking us how they can help, are those who belong to a church.  Perhaps even our own church.  They have a way to help.
They have a building that's mostly empty on a Saturday.  They have members of all ages and gifts and abilities.  They have the perfect answer to that question of "Do you have a need not being met?  Do you need help?  How can we help?"

They have a congregation of servants who when the Lord asks "Whom shall I send?"

Should all be answering "Here we are, send us!"

Not if it's convenient.
Not if we're not scared to.
Not if we don't know how.
Not if we're afraid we'll be sued.

But rather "if there's a will, we'll find a way."  "If God calls, he will equip."

For families like mine, the help we need isn't in the time of crisis, it's in those times of reprieve.  For our son when he's well, to have a place to go for a few hours just for fun.  To have an energetic youth peer play catch with him. Pull him in a wagon. Chase him on the playground.

For some less mobile children or youth, the senior ladies and gentlemen can perhaps read Bible stories to them for a few hours.

Deacons can stand guard at doors for sly escapee's.  Women's Ministry can greet the Mom's and take their name and commit to praying for that family.  The Men's Ministry can be buddies to some big-ol' boys!

The possibilities of how a church can and should answer that question are limitless.

If it weren't for fear from those who God calls to be fearless.

All I've heard lately is fear.  Things like, "We can't continue offering our perfectly suited ministry building that God provided for "outside" groups to use for respite because of liability."  "If we were to be sued, we could lose everything."

That might be true, but if the church that preaches faith to everyone else can't save a morsel for itself, then we're all in trouble.

If you were walking down the street and saw a child hit by a car, you would not just walk on by.  You would go to that person, do what you could, and then call 911.

If you were in the grocery store and someone dropped in front of you with a heart attack, you wouldn't not help because if they died you might be sued.  No, you would hopefully attempt CPR and call 911 and trust in the Good Samaritan law.

Parents of children with autism and other disabilities are asking no more than that.

That you do what you can and trust God to do what you can't.

We are supposed to belong to a church that preaches faith, that there must be purpose in your child having autism, a disability, seizures.  That even though it may be hard, even though your finances will be wiped out, God will provide.

But what I've heard lately from those same churches, is that they can't open their doors to respite programs because they might get sued and lose everything.

Can churches built by God really lose everything?

Is God's faith different for people than it is for churches?

If God can provide for the church, don't you think it can protect it?

And even if something were to happen, could it maybe be part of God's purpose or plan?  Like parents are told to believe regarding having a child with a disability?

Yes, those things are hard.  It takes courage.  It takes money.  It takes collaboration.  It takes trust.

It is difficult to step out of that boat, to cross that river.

But maybe, just maybe in doing that - you can see just what a blessing it is to families like mine whose lives are nothing but hard, nothing but difficult.  Yet we have no choice but to plunge head first in the Jordan.  Jump out of that boat with no life vest.

Or liability insurance.

I've also heard things like, "Well not many who we serve attend our church..."  How many villages from the mission trips you sent your members on have come back to attend your church?  How many people on your own membership list attend your church regularly? 

What if the parents dropping their child off for respite on a Saturday never ever occupy a pew on Sunday?  Is it not worth it that the child, youth, or adult who has a disability and who is made fun of by their peers, bullied on the bus, abused in the classroom -- has a place to go for a few hours once a month to learn about Jesus through the volunteer who read to them?  The servant who was the kind, loving, accepting hands and feet of Jesus in caring for them? 

Are we serving because there is a need we are equipped to meet, or serving so we can get?

God calls us to plant.  Not harvest.

We are to sow.  God's Kingdom, not the church, is to reap.


Don't ask how you can serve someone, if you're not prepared to serve in the way they need.  We've been abandoned by too many people and it's just too crushing to be abandoned by those whose very faith says to serve, trust.  Not flee, fear.

Parents of children, youth, and adults who have autism for the most part don't need help in crisis.  There's not much you can do during those times anyway.  What they need is opportunity when all is well.  A Saturday afternoon respite to just enjoy their house or go out to dinner or see a movie.  Their child or children with disabilities who are nothing but stuck in their house, don't need a babysitter to come over, they need a place to go play and be around people who have fresh wind, fresh fire, -- perhaps little experience, but great faith.  By doing that, you are serving in multiple ways.  Respite for the parents, time for marriage for the husband/wife, a change of scenery and recreation opportunity for the child, youth, or adult with the disability.

What we need is for you to be Good Samaritans who serve with cell phones.  If something happens, call 911.

I guess if that's simply too big for God to make happen through your church, there are local disability organizations who serve families who can always use your donation.

Most of them non-Christian based.

Think about that.

The Pricetag of Priceless

I received a letter from Matt's Custom Decks on Saturday - asking if we were happy with the construction job they did for us and if we had any comments or concerns so that they could improve their services, etc.

For a family like ours, it's hard to answer that.
 

Our perspective is too different.

We deal in "needs" - not "wants".

We have a son who is severely affected by autism and seizures.  Whose vaccine-induced immune and mitochondrial dysfunctions spare no body system.  

We live in Houston.  It's hot in Houston.

Really hot.

Our son doesn't sweat to help his body regulate temperature.  He has seizures instead.

So for summer after summer we could only be outside for 15 minutes at a time.  We had a tiny porch slab, but it wasn't covered.  We have no trees in our yard for shade because for years we had an above ground pool.  When the seizures became really bad, we had to get rid of it and just never got around to planting trees.  Not that they would have provided any shade anytime soon!

If it wasn't the relentless heat that trapped Brandon inside, it was the seizures.

Finally - the day came when we felt we were in a position to spend the money to have the porch expanded --- and covered.

Obviously our "Life with Autism" wasn't going away any time soon, and with respite hopes non-existent for the most part -- for our own sanity and stress-relief, we had to create our own escape.

A refuge in our refuge.

For all of us!

Looking through Matt's Custom Decks website was a wonderful dream.  So many different ways we could do our porch.  How do people who do have such luxuries of time to contemplate such projects ever narrow it down among all the possibilities? Where do they get the money to do all that?

I guess they don't have lifetime care for their adult son to worry about.

I guess they don't spend $500.00 or more a month on supplements and special food orders, and about an extra $200.00 on the grocery bill for organic, non-toxic, and special diet food.

I guess they don't order raw camel milk at $9.00 a pint from an Amish Camel Dairy clear across the country and have to pay for expedited shipping so it doesn't arrive in Houston as hot chocolate.

I guess they're not having to pay for private school, out-of-pocket for autism treatments insurance doesn't pay, or out-of-network for alternative doctors who do far more than any in-network doctor has ever done for us.

Looking at all the possibilities reminded me why I love the part of "Life with Autism" that I do love.

Like knowing a "want" from a "need".

The picture shows that for us.

Brandon had a seizure that morning.  Because of this covered porch and the outdoor couch that my husband custom built for Brandon to be able to lay flat on when he has a seizure -- we were able to all still enjoy a slice of normalcy.  We could all be outside.

A need met.

The porch didn't cure my son of the seizures, it just made getting through them a bit easier for all of us.  Our lives didn't have to come to a screeching halt to constantly check on Brandon in his bedroom and we didn't have to be inside on a beautiful outside day

I don't think I could ever convey that in a customer satisfaction survey.  What their project was to us was so much more than just another job.  It was building freedom for us.  Respite for us.

When Todd and I sat out there while Brandon was lying on that couch, I know we were both on the verge of tears.  The simple joys of simple blessings.

It was the best money we ever spent, and not just for something we wanted for the purpose of wanting or something that would impress or add value to our house ---

But in how it gave back to our son just a little of what autism has taken from him ---

Normalcy.

Freedom.

Yes Matt's Custom Decks -- we are pleased with the work you did for us.

It was worth every penny.

It's absolutely priceless.


The Guppy's

...is when I carried you.

We've certainly hit some low points in our "Life with Autism."    In fact, we really can't remember anything but brief periods of calm while the chaos reloads.  Seizures seem to have a relentless grip on our son, on our lives, -- so much so that I find myself thinking of the "Footprints in the Sand" poem quite often.

Knowing --

But wondering...

This picture from our life today is our "Footprints in the Sand" photo.  Todd has carried Brandon like this many times.  I just happened to have my phone with me to snap this one.

Brandon had yet another seizure this morning.  On yet another Sunday.  The Lord's Day.  At least though he was awake.  He couldn't walk, but he was awake.

The little things.

I guess no better day than a Sunday to be reminded of how when Todd or I must carry Brandon, that it is God who is carrying us.

Oh if we could all live with the faith Brandon has.  That his Daddy might drop him never, ever enters his mind.

That God would ever forsake us --

Should never ever, enter ours.


NDCQ
Michelle M. Guppy



Footprints in the Sand

 One night I dreamed I was walking along the beach with the Lord.
             Many scenes from my life flashed across the sky.
                  In each scene I noticed footprints in the sand.
                       Sometimes there were two sets of footprints,
                           other times there were one set of footprints.

                                  This bothered me because I noticed
                                that during the low periods of my life,
                             when I was suffering from
                         anguish, sorrow or defeat,
                     I could see only one set of footprints.

          So I said to the Lord,
      "You promised me Lord,
         that if I followed you,
             you would walk with me always.
                   But I have noticed that during
                          the most trying periods of my life
                                 there have only been one
                                       set of footprints in the sand.
                                           Why, when I needed you most,
                                          you have not been there for me?"

                                 The Lord replied,
                          "The times when you have
                  seen only one set of footprints,
          is when I carried you."
                                                   

Mary Stevenson