Life with Autism

  • I am..... - I am… I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis of (child’s disability) - I looked at it...

Thursday, November 21, 2013

Dear Congressman Issa...

Congressman Issa,

As I type this, I am still breathing hard from the aerobic exertion of my nearly fifty-year-old self from having to semi-lift and drag off the cold tile floor to a gymnastics landing mat, my nearly twenty year old son who is non-verbal and severely affected by autism,  -- and who just had yet another seizure. I have no one here to help me lift him to a bed.  So a gymnastics landing mat on the floor will have to suffice as he sleeps it off.
All the plans for the rest of the day cancelled.  Yet again.  I must chuckle in how just a few days ago I was e-mailing our Pastor about perhaps resuming a mid-day prayer time that was held in the past.  In what world would I actually think I could commit to such a lofty desire in actually thinking I could be somewhere as scheduled...

Not in my "Life with Autism"....

Not ever.

I'm writing this knowing the chances of it ever reaching you are slim.  Though I will formally submit it to your office.  Just as I have submitted so very many other similar letters over the years in our "Life with Autism."  In fact, in preparation for the Congressional Hearings on Autism that were to be held in December, I actually searched my saved documents for letters I had previously sent to members of Congress. I was going to use them to compose yet another letter to send.  I was saddened by them all.  Each at different times, all with the same message of help.  The same plea's for reform.  The same demand for answers.  The same truths shared.

Here are excerpts from the letter I wrote to Congressman Burton for the Congressional Hearings on Autism over a decade ago...

Written in August of 2000: second child was born on January 4, 1994.  This child was breastfed, developed normally, smiled, laughed, scooted, rolled, sat up, all the milestones were met.  Brandon had his first MMR on 1/4/95 on his first birthday. At that time he received the last of the 3 HIB vaccinations as well.  That night he vomited 3 or 4 times and was inconsolable.  We just thought it was a cold.  Then 6 months later during periodic well- checks, my pediatrician was concerned that Brandon was not developing on target.  He was not hitting the milestones for his age.  At 18 months to 2 years of age, Brandon was diagnosed as PDD. 

On 7/31/1996, when Brandon was 2.5 years old, he received yet another MMR vaccination.  Why I allowed that to happen I’ll never know.  Something about a new more effective strain to replace the old vaccine, and the children had to be re-vaccinated.  After that approximate time until now,  I do not remember a normal solid formed bowel movement from my son.  Nor has his language ever developed from the usual babbles, and mamma’s .  Coincidence???  or a Connection???  Where’s the unbiased research into that?  Research from independent  groups and with money not connected to the vaccine industry itself…  The questions we ask ourselves late at night, the questions without answers we receive from our Pediatrician’s  - - - are just maddening.  Every other disability or disease I can think of for a child has some answers.  The parents are usually told what caused it, what treatment plan to pursue, what the outcome will be.  With Autism – we don’t have that!  Everything is theory – try this, try that…  when will we step up the research to get some answers?  I have thought and thought over and over, what did I do with my child from the age of 18 months to 3 years when the regression really began..  my child didn’t go to daycare, did not have a head injury, I wasn’t a “refrigerator mom”, all I did was have him vaccinated on time!

Those are the issues I live with on a day to day basis.  From the time my child wakes in the morning, to the time he goes to bed at night. My nights are  mostly filled with thoughts of:  What insurance company do I have to call and dispute a claim with.  How should I word the ad in the paper for a therapist.  What special education advocacy group can I call to attend an ARD with me.  Did I remember to buy more supplements for my child’s regimen….

Instead of my freezer being filled with Popsicles, it is filled with frozen urine collection tubes to mail here and there to try and get answers to  help my child.

The greatest burden on my heart  is, “Will it ever end?”  “Will there ever be answers to the questions?

In the Congressional hearings of 1999 on Autism, Renee Russo testified that, “This is War,” referring to the need for more awareness and research.  This is a war for awareness that we parents must win for our children.  We have been on the battlefield for quite some time.  We are drained from the tears and the financial burden, we are scarred from the hurt and anger of having no answers,  and we  are tired from the resistance on every issue we face.  It is time for reinforcements in terms of more awareness, research,  grants and programs to help our children.  As a Congress, your unity on the legislation and  the issues I have laid out before you  is the most “Lethal Weapon” we have in our fight for National Autism Awareness and  the future of our children.
………….  1 in 500 children are silent
             ………….. I refuse to be.

Here is one letter from 2005:

I want to thank you for taking a few moments to read this personal testimony on behalf of my family as to why I have traveled to Washington, D.C. for the “Power of Truth” rally on July 20, 2005, encouraging President Bush and Congress to enact legislation that bans the use of any form of mercury in vaccinations given to anyone.    I speak for my family – and for the thousands of children harmed by this toxic substance.

My name is Michelle Guppy, and I have been married to my husband Todd,  for 17 years.   We have two wonderful blonde-haired, brown- eyed boys named Matthew and Brandon.  Brandon is non-verbal and has autism and pervasive developmental delay.

As you can see in the pictures attached, Brandon was developing typically.  Sitting up, crawling, babbling, followed by a few words…  Then, when he turned 12 months old – he received a series of 9 or more multiple vaccinations all given at once – while he was running a fever and on antibiotics for recurrent ear infections.   I did not know that it was dangerous to give a child vaccinations while their immune system was already compromised.  I did not know that multiple vaccinations given at once, contained more than the EPA allowable levels of the mercury that was used as a preservative.  I didn’t know that my Pediatrician was giving the vaccinations too close together.

Those things that  I did not know – were what triggered the “series of unfortunate events” that has brought our family to this journey with Autism.

My son went from wearing hats – to that being a painful sensory experience.  My son went from babbling a few words – to being totally non-verbal.  My son went from looking at me and smiling – to sitting in a corner banging his head against the wall.

To think that this all could have, and should have, been prevented – is incomprehensible.

Please support any, and all, legislation that bans the use of any form of mercury in any vaccination given to anyone.

It’s too late for my child, and for this entire generation of children harmed by mercury, but it’s not too late for the next generation.

Remove mercury from vaccinations.

That was in 2005. 

Then for the Congressional Hearings you held last November, this is what I submitted:

                 Congressman Darrell Issa
Committee on Oversight & Government Reform
     Testimony for record on Autism Hearings

My name is Michelle Guppy -- mother to Brandon Guppy, my son who is 18 years old and is non-verbal and who is severely affected by autism, gastrointestinal disease, and seizures.

He was not "born with it".  He was developing and starting to say a few words, when after a series of 9 vaccinations in one day -- he lost language and regressed into autism.  Where one day he was smiling for the camera with a hat on, the next year he had so many sensory issues he could not tolerate wearing a hat and his smile was gone.  In its place the preference to be alone, untouched.  Happiest when in his room banging his head on the wall.

Ever since the 1st Congressional Hearings I attended, I've been banging my head against the wall myself.  I've been at this since so very many parents like me sat in the hearing room listening to Congressman Burton share the truth, and all the other Government alphabet-soup agencies tell their lies.  I get it, the implications of admitting vaccine policy has gone terribly wrong.  I get that you have to go along with the money that funds your elections or re-elections in believing what Pharma tells you about how there's no evidence vaccines cause autism.  That's all fine ---  except that too many and too toxic vaccinations do cause autism.  And will continue to...  Denying it won't change that.  Redefining autism won't cure it.

I watched every word of what was spoken from my desk at home.  I can't work because my son misses so much school due to uncontrolled seizures.  I watched those hearings and I was skeptically hopeful.  I laughed at how terribly uncomfortable Boyle looked.  Sounded.  Rightfully so.  The CDC & NIH have lied and covered up the truth for too long.  I cried at the truth from those who are on "our side" and who are not tainted by money and power and who are free to speak that truth.  Free to follow where the truth leads -- no matter the implications.  I hope you will too. Follow the truth.  I met a Texas Senator once whose words give me hope that are others in Congress who have his bravery.  He said "Supporting autism insurance is the right thing to do, whether it gets me re-elected or not..."   That's what your job is.  To fight for & serve people, not help fund & support special interest groups, or Pharma.  Not to protect the CDC & NIH.   Healthy children do not make Pharma money.  The Autism crisis is a result of that fact.

We are tired, broke, yet we fight against all odds each and every day for our children.  Education, Insurance, Medical Treatment, Recreational Programs, Respite, Long-term Care, Supports, What happens after 21, What happens when I die.  I'm one of the veterans - I've been at this for a while.  I'm tired.  My son deserves for Congress to say to him, "We're sorry" and then to listen to us how to help him. What he needs.  What they all need.  The 1 in 88.  And counting.  They need for the truth to be told, for the lies to stop, the corruption to end.  The help to finally begin...

Today is November 21, 2013. 

I just returned from another "rally" of sorts in traveling with friends to give Oral Testimony to the IACC.

Same crisis, different President, higher incidence. 

And my HOPEISM in the Congressional Hearings for this year?  Yet again dashed.  I'm sure for no other reason than those content to live in their lies and uncomfortable with the truth not wanting to participate.  Well, excuse the language, but screw them.  You do not work for them, you work for us.  Us who need those hearings to have an opportunity to share the truth.  Not our truth, not Pharma's truth, not the CDC's truth, not the NIH's truth, but the truth.  Allow us to present the research.  Give America the chance to decide whose truth they would rather leave their child's health to.  I sure wish I had that opportunity years ago before I ever allowed one needle full of toxins to be injected into my son's perfectly healthy, perfectly designed body.

I don't have any new or different pleas to submit other than what I've already submitted.  Time after time.  Except maybe that my son is older, seizures more frequent, costs to care for him getting higher, my time on earth to care for him getting shorter.

I hope my son's eyes haunt you with each excuse or delay in holding hearings for the truth of the corruption in the vaccine industry, Pharma, the CDC & NIH - to be exposed. 

His eyes represent the black & white truth.

And I hope they bore into your soul as much as they do mine.

Perhaps more...

Because I didn't cause my son's autism.

YOU, the government, in a myriad of ways, did.

Tuesday, November 12, 2013

When Superman Sleeps...

I had one of those thirty-second conversations with my husband the other night.  Because he is the one who has the job that pays the bills, I typically do the night shift with Brandon so he can sleep and be rested for a very demanding job.  Brandon had not been sleeping at night, and he asked me if Brandon had slept the night before.  I remember laughing in reply, "You have no idea what goes on after you go to bed.  It's a whole 'nother world upstairs!"   I think at one point in that night in question when I went in Brandon's room to stop him from jumping up and down -- he had taken all pillows and all sheets off his bed.  Somehow they were all under his bed.  And there he was, just wide awake jumping up and down.  And there I was, at 2am, crawling under his bed to retrieve all the bed things, making his bed, and threatening him with no straws ever again in his life if he didn't get in bed, stay in bed, and SLEEP.  Of course that didn't phase him.  I think not even an hour later I heard him jumping again while playing with the one electronic toy I missed the time I went in there before I found the sheets and pillows under the bed.

I wanted so badly to just say to him, "Fine, when you do get tired, sleep on a bare bed with no pillows.  Or crawl back under your bed and sleep there on the floor with your pillow, sheets, and dust bunnies to keep you company!" 

But I don't. 

I fix the bed, make sure he's clean and dry, and see how close to falling asleep I can once again get, before I have to get up and do it all again.

In how maddening it all is, how could I possibly be mad at this innocent child who is probably as frustrated at it all as I am.

That's the thing that is so hard.  What is his Kryptonite that keeps him awake?  That hurts him?  That frustrates him? 

You just can't imagine what it's like to live that way for so long.  New parents expect that.  To not get more than a few hours sleep.  But for me, my son is nineteen.  I've been doing the work of three shifts of employees in a nursing home type facility.  It's mind-boggling how parents must do that.  And I am fortunate that for me, these all-nighter's come in cycles.  I do get reprieve now and then when he does sleep through the night.  Well that, or those are the times I just too exhausted and don't hear him.

And then there's the times like these when whatever that Kryptonite is, he has defeated for the moment and sleep takes over. 

No matter where he may be at that time.

Sleep my Superman...

Sleep soundly...

Saturday, October 26, 2013

The Pain of Autism

Sometimes autism just knocks the breath right out of me.

That's what this picture did.  After the past week of rare video's of my son laughing, smiling, and winking at me in the car -- Click here to view the video -- and even rarer still pictures -- to then have been shocked back to reality by this picture is like being sucker punched in the gut.  I don't know why this picture shocked me, it's not like our entire "Life with Autism" hasn't been a roller coaster where the highest of highs are dramatically followed up with the lowest of lows. Often scaring you to death or making you feel like you want to vomit up your lunch!  I've been blessed by "Life with Autism", enriched by it, yes.  But thrilled by it as a roller coaster ride, never.

But I chose to share this picture because it so symbolizes the depth of autism.  How just when you think things are going great -- leaps forward, or as in our case, itty bitty inchworm steps forward -- it digs its ugly roots in deeper to show you just how deep autism's roots are.  Or in this case, it digs their fingers deeper into the skin, scratching, tearing, scarring.  We keep his finger nails short.  So imagine just how hard he was scratching himself to produce what you see.

He was in the bath tub, his favorite time.  Water, jets, water.....  He was giggling as he does.  I was on the bed where I can see the tub and the back of him and was listening to him have a good time.  Doing his squeals of laughter as he does.  He was doing what he was doing if you clicked that link above and watched the video.  It was a peaceful time, I was getting a few moments of down time while Brandon was enjoying his "tub time."  Then after a few moments I went in to check on him and wash hair, etc --- and was absolutely horrified to see this view in the picture above.  I have to admit that some not so nice words came out from the sheer shock and disbelief at the sight before me. I'm all wondering if I passed out and a mountain lion somehow came into our house and tore into his chest!  But I didn't pass out.  A mountain lion didn't do that.  Brandon did.  When Brandon laughs, he often curls his hands up into his chest and does a little "scratchy" thing with his fingers.  He pinches up his shirt, it's just what he does when he laughs.  But in the absence of a shirt -- this is what the result was.  Just think for a moment how hard you would have to be scratching your own skin to do what you see in the picture.  I tried to do that on my arm and couldn't even get that result, at least before pain stopped me.  That is how deep autism reaches into a child.  It steals their childhood, their imagination, their sense of danger, and their sense of pain.  All I heard from the next room was laughter.  Lots and lots of laughter.  No sense or indication that he was hurting himself.  Not even in peaceful fun can autism not be supervised.  That's how deep autism is.  Not even in times of laughter can there be down times for the parent.  That's how deep autism is.  It took half a tube of neosporin to even cover all those deep scratches.  What typical child in simple laughter would do that to themselves?  And if that picture is the result of what had to be painful but was instead laughter for my son -- can you then imagine the depth of pain he must be feeling when he literally chews his hand in pain from the flare-ups of his bowel disease?  Can you then imagine the depth of frustration or over-stimulation it must take for him to scream out at times and further bite his own hand to the point of blood?

I share so much of the joys of autism, our few and far between victories, our heartache and heartbreak at set backs - and on days like today, the very ugly side of autism.  The confusing side of autism.  The side of autism that sucker-punches you and leaves you reeling.  The side of autism you will never see as a sense of urgency in any autism awareness campaign or government led anything about autism.  No, for those things, all you would see is the photo-shop picture-perfect boy laughing in the tub as if autism were nothing more than an alternate lifestyle.  Not this one.  It's not cute or pretty.  We must keep these pictures hidden.  People don't want to see real autism, it's much easier to ignore the pretty one of kids who will no doubt grow up fine and able to care for themselves.

That's why I'm sharing this picture of "Life with Autism -- in Pictures" -- and even this doesn't even come close to scratching the surface of just how deep the pain of autism is.

Pun intended.

Saturday, October 19, 2013

This little light of mine...

Psalm 4:6
Let the light of your face shine upon us, O Lord.

So often I think of what purpose there is in my son being burdened by autism. I believe in Faith, live by Faith.  In that, I understand that there is purpose in all things.  Good, Bad, and Ugly.  Life with Autism covers all three at times.  Sometimes, all at once.  I've learned to live our Life with Autism moment by moment.  I try to forget those moments of the past that brought me to autism.  Vaccinations mainly.  I can't forget though, so I simply try not to stare too long.  As painful as it is to even fathom, I plan for the future.  A future for my son once I'm no longer here.  I look ahead as often as I must, but the glare is simply too much.  I find myself turning away in pain.

But the present. 

That is where I try to live.  One moment at a time in the present.  Savoring the successes of that moment, and knowing that any sorrows in that moment will quickly pass away.  Remembering that it's always darkest right before the dawn.  When the light of day brings new grace, new mercy, new HOPEISM.  We've been experiencing much darkness for the past four years now with relentless seizures and a health decline.  But slowly, slowly we have been approaching dawn and this week, experiencing such bursts of miraculous light in the pictures captured of our son smiling, laughing, happy.

Such light!

It reminds me of Ephesians 3:20-21 which says, "Now  to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ....."  Brandon's purpose in our lives is to show us immeasurably more of God's light than we would have ever experienced had it not been for his autism.  As I'm learning in Experiencing God -- when asking for something in prayer, as in the healing I so often ask for, what if God has immeasurably more than that?  Sure, God can heal Brandon.  He's made the blind see, the lame walk, and he's even resurrected a dead man from his grave.  Healing Brandon would be nothing to him, so to speak.  But what if our period of silence in the answer of that prayer is God wanting us to see more of Him.  More of His light, His inspiration, His HOPEISM shining on Brandon for all who are touched by him to see.

2 Samuel 22:29
"....the Lord turns my darkness into light."

Psalm 43:3
"Send forth your light and your truth, let them guide me; let them bring me to your holy mountain, to the place where you dwell."

Psalm 119:105
"Your word is a lamp to my feet and a light for my path."

Isaiah 42:16
"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth."

Oh my Brandon -- I pray so very hard for healing for you.  Yet I know you have something far greater than that... 

God's Glory, God's light shining upon you.

2 Corinthians 4:6
For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of God's glory displayed in the face of Christ.

Saturday, October 12, 2013

The world outside the window...


For typical families there are endless possibilities, sports, parks, movies, etc.   But for families of those who have autism, the kind that isn't rich and famous, -- what is there outside their home?  What endless possibilities are out there for them to safely participate in?  What recreation for them while at the same time respite for the parents?

Today, Brandon was looking out the window, wanting to go somewhere.  He can't ride a bike down his street.  He has no friends to go hang out with.  It's challenging to go to most parks because they are so open.  I would need three of me to be able to hand off the baton to in a relay of endless chasing and following to keep him in my sight and within arms reach should he bolt.  Yet he wants to go, do, be.  Though he is far from "typical" -- his energy level far surpasses typical.  He needs a place to go where it's safe for him to go.  A fenced in playground where I can sit at the gate and let him just roam freely.  A respite program at a gym or recreation center where they can just run and play while the parents can go do errands, go out to dinner.

It breaks my heart to see my son so want to be out and about - yet for him there are few to no opportunities for that.  There is such a great need.  So very many just like Brandon who are looking out that window on a weekend wondering when they can do what they see others do.  A place to go that is not their house, where perhaps there are some fresh hands and feet to chase them, tickle them, talk to them. A High School allowing parents to take their children to the track on a weekend.  Those are usually always fenced in.  Yet locked.  A church that's empty on a Saturday is a great place for recreation - especially those that also have fenced in playgrounds.  Too much liability I guess.  Parks that see the need for a totally fenced in area where tired mothers can sit by the exit and energetic young adults run around.  Too expensive I'm sure.

I long for when our communities will unlock opportunities for Brandon and all his friends. For when they will simply see them as someone to love, not a liability.  For when everyone will see them as an investment, not an expense.

In the meantime, we do what we can. Today a drive with Dad to get the car washed...  Other times we've gone to Galveston for day trips, often, we do errands.  But what teenager likes to go on errands with their parents?  Not many.  I'm sure Brandon feels the same way.  It's always us though.  We live autism 24/7.  It would be nice for Brandon to have a place to go outside of his home.  It would be nice for us to have someone else provide some recreation for him while we do our errands, have but a moment to ourselves.

Parents of children, youth, and adults who have autism are tired.  We are getting older and slower and worn down.  We need help.  Recreation programs for our children is respite for us.  Our children have typical energy levels, yet no recreation programs suited for them.

So we wait. 

Like Brandon at the window. 

For our communities and churches to come together in providing opportunities for those in the autism and disability community to get to experience the world outside their windows.

Friday, October 11, 2013

Of castles, dungeons, and a Queen Mommy who needs to live forever...

I've wanted to share about this picture for a while now...  It's not the best picture I know, but it's what I can get from my car as I drive up to the center to pick up Brandon from school.  He is often standing at the window looking out -- watching and waiting.  He knows it's time to go home when he stands in the kitchen where that window is and helps to gather his lunch things to put in his lunchbox to come home.  He may not know what time it is, but he knows it's time to go home when he sees the cars line up.  

My son has no imagination that I know of.  That was the first childhood rite of passage that autism took from him.  He's never played Cowboys & Indians.  He's never pretended to be Superman.  So during the times he's at the window, I sometimes imagine for him.  I imagine that he knows me as Queen Mommy and I'm coming to rescue him, Prince Brandon, from behind the bars of the evil dungeon he's trapped in.  All of the stories I told my boys at bedtime were about Queen Mommy and King Daddy who lived in a castle in a faraway land with Prince Matthew and Prince Brandon and the Royal dog Copper.  King Daddy was always off slaying dragons or was my story and so Queen Mommy who ruled the castle was the main character!  Back to reality --- where he is, is far from being an evil dungeon...  More like a Spectrum of Hopeism.  I just like to imagine that he truly knows who I am and looks forward to me picking him up, and not just that when the burgundy Suburban gets there, it has straws and his favorite football in it.  When I drop him off in the morning and as I drive away, all that I see is how he stares longingly at my tires, not me!  Oh, how crazy, mad, not-always-so-wonderful-life-with-autism is that.....  How one boy cried when I dropped him off at school, hugging me and asking if he could stay home with me; while the other only sad because my tires are going away...

This picture evokes so many emotions.  Thoughts that both bless me mightily and scare me more than the most haunted of houses at Halloween.  I am so blessed that we found such a therapy center for Brandon, filled with people who love what they do and who do it well.  Full of people I trust.  Thankful for the most delicate, finest of fine lines of provision that allow him to be there.  I love having a place to take him each morning he can be there where he will be taught the things he must know, and I love even more picking him up in the afternoon to bring him home where he can be free to just be him.  I love seeing his face in that window when I drive up.  It brings such a smile to my face to see him standing there waiting for his straw and favorite football... He may not know a lot of things, but he knows that when I get there, he gets music, his straw, his football, and then gets to drive home where he can take his shoes off and go in the back yard and jump on the trampoline with Chevy.  When King Daddy comes home he gets to be chased and tickled and wrestled.  When it's bedtime he knows he will get to lay in bed and watch his Michael W. Smith worship DVD while I continue our stories about Queen Mommy, King Daddy the Dragon slayer, Prince Matthew and Prince Brandon and the Royal dog Chevy.  But the one emotion I hate feeling when I drive up and see him looking out that window, is the fear of what will happen to him one day when I'm no longer here to pick him up...  Who will he be watching for?  Who will have his straw?  His ball?  Who will know what music he likes?  What kind of home will he go to?  Will it be to him a friendly castle or a scary dungeon?  Will they let him run barefoot?  Jump on a trampoline?  Will he have a dog like Chevy to jump with him?  Who will play his DVD's at night and lay beside him and tell him stories?  Who will be his dragon slayer to make sure he never ever, ever, ever, ever, needs to be rescued from being drugged up, abused, neglected, -- trapped behind the bars of an evil dungeon?

Oh, how I wish Brandon was the only one of us with the imagination...But since I'm the one who can imagine, each day that I see him standing there in the window I'll pretend that one day when I am gone there will be a castle in his community where he can live and jump freely and be happily ever after... 

Ahhhhh, HOPEISM ---

The thing my fairy tale depends on!

Tuesday, October 8, 2013

Of Brandon, Blurriness, and the Blessing of HOPEISM.

No, you don't need to adjust your glasses or your computer screen.  Brandon is blurry.  That is his "Life with Autism" -- always in constant motion.  A blur.  The only time he is still is when sleeping or when recovering from a seizure.  All other times, if you want to capture a rare picture, you best have your camera on, ready, and set to sports action.

When I was looking at this picture as photos from my iPhone were downloading to my computer, I almost deleted it along with the many, many, many other pictures that captured autism more than Brandon.  It's always only one or two out of so very many that are "keepers."   This one almost didn't make the cut, it was blurry.  I was a split second too slow in capturing the smile he had while looking at me.  By the time I could hit the button on my iPhone --- in the words of the Jase Robertson on Duck Dynasty, "He Gone!"   And this picture almost deleted.

But something about it made me keep it.  The way it describes our "Life with Autism" so perfectly, I guess.  A blur.  Some days seem like just that....a blur of craziness.  Of seizures.  Of autism.  Of constant motion.  Of constant humming.  A blur of never-ending advocacy.  Never-ending research.  Never-ending worry about what the future will hold for him.

Then I also thought about how it describes my HOPEISM.  For me to survive and dare to thrive in "Life with Autism" - my Hopeism must be like that picture.  In constant motion.  In that picture I can see the faint outline of where Brandon was the instant before he started moving forward.  I want my Hopeism to be like that.  A series of outlines of where my Hopeism was, before it moved forward. Always keeping pace with the many challenges we must face. I don't want a perfectly poised portrait of Hopeism that I can frame and be content in staring at.  I want it to be blurry because not even the most powerful shutter speed could keep up as it moves far from what I can even see through the lens.

Oh my Brandon, my blurry, blurry Brandon--- 

How you do help me see the Blessings of HOPEISM ever so clearly...

Friday, October 4, 2013

Experiencing God through Pictures...

 Much like Brandon was staring at me in the picture above that I took yesterday, I've been staring at a blank page, blank computer screen, and blank air all week in searching for where God is working so that I could join him there.  That's what the Bible study I'm doing is all about....  Experiencing God.  Knowing and Doing the will of God.  Seeing where he is working and joining him there in that work.

That's been tough to blend in with a life of autism advocacy.  I see Pharma at work, I see a corrupt medical system at work, I see woefully inadequate service agencies at work. I see insurance coverage that doesn't work for us.  I see few opportunities for recreation, respite, and meaningful work for our kids - at work.  I see an uncertain future for our adults with autism at work.  In fact, for there to be appropriate places for them to live and be cared for once I'm dead -- at work -- someone should have been at work on that over a decade ago.

So you see my dilemma. 

But like Brandon, I just keep staring.  Searching.

These pictures were taken in a neurology specialist's office.  I left my house at 1:30pm and didn't return until 7:30pm.  I remember after the first hour waiting in that office - out of the blue asking God, "So....where are you at work as I'm in this wretched place yet again?  Spending a wretched amount of time to get nothing wretchedly accomplished yet wretchedly again?  How can I experience you here?"

Probably nothing with that attitude...

I'm sure I single-handedly keep God laughing and shaking his head at my wretchedness.

But in all honesty, I'm wretchedly tired of it all.  The hurry up and wait for nothing medical system that is "Life with Autism."  Hurry up and get there early so you can sit there and wait for no help...  As I was trying to give myself an attitude adjustment, I looked down and saw Brandon with the sweetest expression.  He's the one who has it hard, yet I was the one complaining.  He was sitting there, still, something that is not in him to do, and I was the one pacing like a caged animal.  
Through each weeks study of Experiencing God, it talks about  how we are to be looking to see where God is at work and joining him there.  So often I get so very bummed out because I see other places where he is at work, where I would like to join him, but I'm rarely able to.  Plans thwarted by seizures.  The 24/7 demands of autism.   I desire so greatly to serve God, yet so often feel I can't.  Which often leaves me feeling like I'm not experiencing anything at all.  I so want to be able to go to class on a Sunday night and share this big grand story of where I saw God at work and joined him and the hugest of miracles that occurred in doing that.  I desire that grand story so much sometimes that I often overlook the smaller yet just as grand stories of where he has been at work all along, and where I was joining him but didn't realize it. 
Like in being a mother, a guardian, an advocate to this sweet boy in a young man's body.  In how in the midst of chaos to him -- being in those medical centers for hours over the course of two days -- I was able to experience God by capturing these miracles of pictures.  Miracles to us at least.  Others with typical children can get many such pictures.  But not me.  When I share a picture of Brandon, it's not that I searched through all my good ones to find the best one.  It's that by grace of God I was able to get just one that shows Brandon more than his autism. And like here, when I have all these, oh my goodness.  I can't describe this feeling.

Like most everything, I'm a slow learner.  I wasn't seeing God in anything in that doctors office until I decided to simply enjoy Brandon.  In between bouts of where he was getting tired of it all, he was ever so sweet and I wasn't going to miss these rare opportunities to capture him in picture.  Even while all the doctors were in there asking me question upon question, I kept clicking the camera hoping one picture would capture a grand miracle I so desired to be able to share about.
The past two days have had the added benefit of being personally empowering.  Typically at the medical center and around specialists, I feel at their mercy.  Held hostage by their rules, their ways, their expertise.  But no more.  I no longer felt that way.  At one point the fancy specialist asked if I would turn off Brandon's music.  He won't wear headphones so I have my iPhone playing softly, yet where everyone can hear it.  I simply replied that Brandon is calmer with his music and that this appointment is about helping him, not appeasing her.  She would have to adjust for once.  Not Brandon. 
As we waited in the valet parking area for them to bring our ride home, for a moment I was again wretchedly distracted by a woman about my age who was getting off work.  She walked out the door, took off her name badge and perfectly ironed jacket that matched her perfectly ironed (non-Camo I might add) pants and started walking in her perfectly polished high-heeled shoes down the street I guess to where her car was.  It was a beautiful evening, the breeze was blowing through the trees and for an instant I was wretchedly jealous of her most likely non-autism typical life.  She worked her eight or so hours and now was free to enjoy the evening.  Maybe stop somewhere for coffee with friends, maybe go jogging as I saw so many people do on the way home.  She could go shopping, to the market, go out to eat.  Her choices were relatively endless.  My choices always centered around the limitation of life with autism.  I put in my eight hours before I even left for the medical center.  Nearly put in another eight while there.  Then when my car came, I would have to put in another eight or so before Brandon goes to sleep.

She was relatively free to see where God was at work around her and join him there.  The food pantry, church volunteer project, whatever.  But even in that, God still had something for me to experience, even if it had nothing to do with joining in a work. On the ride home in rush-hour traffic, I had more opportunities to witness, and safely capture, Brandon's sweetness. 

His excitement at finally getting to go home...

His discovery of how the wind feels against his face while looking out the window.
And finally....


We were both very ready to experience that!

Through spending these past few days at the medical center with my son, I not only had the miracle of experiencing a side of him I rarely get to see --- but I had the added blessing of realizing how I have been Experiencing God all along, through Brandon.  In the way the author of Experiencing God had anticipated?  Probably not.  But if I can come away from the medical center and think I've Experienced God through pictures, then perhaps I've indeed joined in a small piece of a work he was doing. 

Oh how I wish others would look really hard to see how God is working in the lives of those who have autism and want to join in and experience those blessings and miracles too....
The harvest is unfortunately plenty.

The workers?

All too few.

Wednesday, October 2, 2013

An Image of Innocence...

I captured this photo tonight while Brandon was taking a brief break from jumping on the trampoline.  He was laying down along the net on the inside of the trampoline -- I was standing on the outside. 

I can't stop looking at this picture.  An image of innocence.  He can look that peaceful because he has the purity of innocence.  He is not stained by the ugliness of others.  Of this world.  Of his autism.  Even as severely as he is affected by autism, he doesn't often show it.  When by all rights, he should.  He should be angry.  Un-trusting.  Fearful.  But he's not.  He is an image of innocence.  When he lays down like he is on the trampoline, Chevy, his Labrador, will come over and sniff him and lick him to make sure he's ok.  Brandon has no fear that it could be a grizzly bear coming to attack him.  Those thoughts don't seem to ever enter his mind or worry him.  He does nothing in defense of the sniffing and licking he's about to endure.  When I see Chevy come bounding through the door ready to launch on my bed, I assume the fetal position to protect all vital organs.  I know all too well that a paw landing full force in my spleen doesn't feel good. I know what pain and fear is and I anticipate and avoid them at all costs. 

But not Brandon.  His innocence doesn't allow for those thoughts that I can tell.  As an avid student of Brandon, I love to just watch him and study him and wonder what he's thinking.  Most often I wonder what that would be like.  To be the typical adult I am and to be able to live my life that innocently, --- on a trampoline with no net so to speak.  Not hiding in it, or using it to keep others outside of it.  As mesmerized as I am by this picture, I'm even more mesmerized by how he trusts so completely.  Lives so fearlessly.  When he gets on the top bunk and then wants to come down but can't quite figure it out, I'll hold my arms out and onto his.  He holds on and jumps off.  Not ever considering that I could drop him.  When I care for him, help dress him, hold him through meltdowns, he has no understanding or fear that I or anyone else, would hurt him or allow him to be hurt.  He has the innocence of trusting completely because all he has known in our home, has been love and protection; which makes it all the harder to bear those times in medical centers when we've had to hold him down for blood draws, EEG's (which we will never again subject him to) and other procedures essential to his care.  I wonder what he must think of those times.

I wonder what it would be like to be as innocent as he is.  To trust others completely as he does. 

I wonder who he's looking at way high in the sky in this picture.  And what he's thinking.

I wonder if that net that separates us will ever be removed and the thoughts inside his head released so that I no longer have to stand on the outside and wonder...

Wednesday, September 18, 2013

The Man in the Mirror...

I caught Brandon looking in the mirror the other day.  We were in the bathroom after a toileting routine, and out of the corner of my eye I saw him for the briefest of moments look at himself in the mirror.  I wondered what he saw.  It looked like he was looking right in his own eyes.  Oh, how far he has come since the days at the school in the picture you see.  Then, he wouldn't look at anyone really, always looking down or away.  Never at anyone really.  Most certainly never in a mirror.

But the other day when he did, I wanted to have a magic bottle I could rub and a genie appear to grant me an answer to a question...   What did he see?   The man he saw, did he understand that it was him or did he just see a person he doesn't know? Does he possess the knowledge to know that the man in the mirror is indeed, him?  That who he is looking at is what he looks like?  Well, I guess I've used up my three questions for the genie...  I'm glad heaven is for an eternity, because that's how long I'll need to be asking God all the questions I want to ask.

I think it was something the Pastor said in church last Sunday that made me think of Brandon and dig out from the archives this picture of him not looking in a mirror!  It was something along the lines of how we can't wait until heaven, when our bodies will be perfect, etc.  I've been thinking about that a lot as it applies to my "Life with Autism" -- and Brandon.  Especially as I'm going through the Experiencing God Bible study and how it frequently asks us to share how we experience God.

I think one aspect of that answer for me, would be in how Brandon is in a way a mirror reflecting that image of what we will be in heaven -- perfect.  Who we will be in heaven -- perfect.  When I look in the mirror, I can list off a dozen things I see wrong with that reflection.  I'll spare you my list.  Suffice it to say, I don't first and foremost see someone who was fearfully and wonderfully made as God says in Psalm 139.  I see someone who may not have a disability, unless you count the inability to see what I should.  But Brandon -- if I were to imagine what he thought when he looked in the mirror and saw that man, that none of the things I think of when I see me -- would ever cross his mind.  I think he simply sees a person and perhaps just wonders who it is and why they're in his bathroom.  He doesn't possess the "intelligence" of worldly comparison or standards in knowing what a supermodel looks like versus the average woman.  What a six pack is and how he must work on his to get a hot girl to like him.  He simply has the genius of looking at himself and others through the eyes of God.   Seeing in them, what God sees in them. 

Brandon is, right here and now on earth, what we can't wait to be one day in heaven.  I'm not sure I possess the words to fully explain that.  Unstained by the world.  A person who is perfect in understanding the things it is that God wants us to be.  A person who sees things here as we will in heaven.  Labels of "ugly" "disabled" "stupid" "weird" "too big, too small" don't stick to him.  And he desires to put no labels on anyone around him either.  He has the purity of not knowing what a label is.  I think that's the greatest level of perfection we will be in heaven --- pure.  To Brandon, his body is perfect.  He doesn't know he has a disability.  He doesn't know he's different.  He doesn't know he's too skinny, has acne now and then, or that he has big ears.  He doesn't know he can't sing.  He doesn't care what the color is of the hand that helps him.  He is, right here and now, the purity and perfection that we look so forward to becoming in heaven but can't seem to find a way to here on earth.  I guess that's why I love to be around Brandon.  I love who I am when I am with him.  Not that I'm better, but because it doesn't matter to him that I'm not better.  He thinks I'm perfect just the way I am.  He doesn't know another standard.  It doesn't matter to him that I sing horribly.  That I'm not a supermodel.  That I'm not brilliantly gifted or super-smart.  I love who I am when I'm with Brandon because when I'm with him, I am simply crazy, mad, wonderful, --- me.

I wonder if the majority of what is made perfect in us in heaven, is healed in our body in heaven, is simply our mind -- in that finally in heaven we see ourselves as God has seen us all along. 

Perfectly created.

I guess that's what I'll never understand about churches who don't actively pursue the disability community and invite them to church or serve them in some way at church... No other community of people will ever see you as you will be in heaven, except for those like Brandon.  You can never be around any other population of people on earth who will allow you to see that reflection of heaven, than by loving and serving those like Brandon.

As much as I hate how I have been able to experience God in that way through Brandon, I love that I have been blessed with Experiencing God through Brandon in that way...

How maddening is that.........