When HOPEISM hurts...

Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know

I thought about those lyrics in that song during the wee hours of the morning as my own tears were flowing.  The silent, sobbing tears of a mother for her child.  Her child with autism, seizures, immune dysfunction, and a whole other buffet of adverse reactions to vaccinations.  When I heard my son cry out in frustration at nearly 3am, I trudged into his room.  I saw that he was still in bed.  Wanting to sleep.  Trying to sleep.  But simply could not.  So I laid down beside him.  He settled down after a bit.  As he tried to go to sleep, I could hear he kept swallowing. Over and over.  And I wondered, "What now?" What is this new thing?  This thing that is keeping this sweet boy who wants to sleep, from sleeping.  Allergies?  Some throat issue?  Reflux?  What is making him swallow over and over...  And I went through all the scenario's of how I would even check that out.  Upper Endoscopy?  It would take months to find someone to agree swallowing over and over isn't just a "behavior" or isn't simply "just autism" to then jump through all the hoops of having that done under anesthesia.  As in no lifetime of ours, would he allow that as an office procedure with mild sedation.  Does he have fluid in his lungs or something from seizures, a cold, and how on earth would I get him to sit still for an x-ray?  His bed is raised, I made sure he was propped up even more on pillows in case it was allergy drainage...  He seemed still for a few moments so I tried to sneak out and go back to bed.  Before I got there I heard him doing that swallowing sound again and then his familiar crying out in frustration.  He wanted to sleep.  Oh how rare that is sometimes in "Life with Autism" and how cruel that is how when he wants to, he can't. 

I laid beside him again, helpless to do anything else but be there and go through it together.  I love that about Team Guppy.  Todd and I have always tried to be there with our children and go through any hell they are going through.  Right there with them.  Helpless to help them through it, but right there with them through it.  And as I laid there thinking about the cruelty of Brandon actually wanting to sleep but couldn't, I couldn't help but start silently sobbing out to God.   Asking him how he could be so cruel to Brandon like that.  Telling him how I have experienced God through Brandon's autism and how it has changed me, all of us, but how for once in a very specific way, I would like Brandon to experience God in some aspect of healing.  Every ounce of weight is a struggle for Brandon to keep.  Every day seizure-free is a struggle for him to get.  Every seizure is a struggle for him to even survive.  Every everything is a struggle for him.  Why does simply sleeping have to be one too?  Why God, why can't you heal that one thing that is causing him to do that?  Why can't you give me divine wisdom to even know what that one thing is and how I can fix it?  Every time Brandon made that swallowing sound, I sobbed and asked God why he couldn't just heal that.  And then Brandon would do it again.  And I would be reminded of how cruel I thought that was.  And then I sobbed some more.  And it made me angry.  Angry at how I was laying there angry over acute prayer issues I hear about.  People having a one time surgery, people with illnesses they can and will fully recover from.  These are people who have all lived full, typical lives.  And who will again afterwards, with a few modifications perhaps, but still a fully functioning life.  And then I think of the sweet chronically ill boy laying beside me who has so many medical dysfunctions, and who has had them for so very long, and who wants to sleep but can't.  Who can't even tell me where it hurts.  I'm not sure which I was most hurt by, those ugly thoughts I was thinking, or how cruel I felt God was in seeing my son simply struggle to get the sleep his body so desperately needs.

Oh how I wanted Brandon to experience answered prayer in some of, one of, those specific prayer requests.  We have so many a'la'carte' blessings, but last night in those wee hours of the morning, I wanted the main course answer to prayer for once. And as I those silently sobbing tears ran down my cheeks, I let God know just how cruel I thought that was that this sweet little boy didn't at least deserve that.  All he wanted to do is sleep.  And he couldn't.  And I had no clue how to help him except to keep crying out to God for him.  Yes, even in anger.

Sometimes HOPEISM hurts.  Mary knew that.  The only thing comforting me last night was knowing I wasn't alone.  Mary had to watch her son being beaten.  Humiliated.  Hung on a cross to die.   Jesus must have had some of the thoughts maybe that I did as he was in a desert fasting or days on end and being temped by satan to the point of sweating blood.

You need to know you've got a friend in Jesus
You need to know he felt rejected too
Humiliating pain and unjust treatment
He's been there so he knows what you've been through

HOPEISM simply hurt last night.  For my son, for me, for his future.  When I'm gone one day, who will hear him cry out and get up in the wee hours of the morning to trudge down the hall to lay beside this sweet boy and comfort him, stroke his arm, cry out to God for him?

Who will weep for him?

And God will send a merciful Peacemaker
Comforter of all of those who mourn

It's a personal faith crisis I had to deal with last night, and it's a very real societal crisis that has yet to be dealt with.  They are thousands of Brandon's out there who need medical help now, who will need such lifelong care.  But as for me and this new day where the rain is softly falling and at 10:30am Brandon is finally sleeping, I have to simply acknowledge and accept that sometimes HOPEISM is going to hurt.  But always know in my heart of hearts, as I do, that HOPEISM heals in its own way, in its own time.  And that hanging on to the hope in HOPEISM will always be worth it.  Will always be better than the alternative of living a life seeing no hope.  Finding no joy.  I'll probably never understand HOPEISM, but I'll always have have faith and believe in it.  Even during nights like last night, when I never saw it, or even felt it.


Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know
Psalm 30:5
".....weeping may endure for a night, but joy cometh in the morning."


Indeed it does....


To the NDCQ of HOPEISM of that...

HOOYAH!

A Rainbow of HOPEISM...

I love how God knows me.  I want to know the ending before the beginning.  On most things I have written, I did it from the bottom up.  I wrote the ending, then filled in from the top down.  I've never been one to go with the flow.  I've never met anyone close to that until I met my daughter-in-law.  She came over one day wearing two different colored socks.  I thought that odd.  Then I smiled.

It was a chilly walk at the Nature Trail this morning.  In more than one way at that.  January is supposed to be a "New Beginning" -- a time to look forward with anticipation of the year ahead.  And it is.  It is a new beginning.  I do have such anticipation of answered prayer in the year ahead. But still it's only January, and January has been hard.  I've been reminded of so many unanswered prayers of the past few years with regard to Team Guppy.  In my "Life with Autism" is it also a "Journey Closer to God" in that I can't survive one without drawing closer to the other.  The harder life with autism gets, the more I must draw closer to God.  Even though at times the closer I try to get to Him, the farther away He feels. But still, I press on in faith.  And in doing that, is the realization that goes against most popular schools of preaching-style thought.  In that sometimes being good doesn't mean bad things will not happen. That working hard doesn't always equate to having it easy.  That if you say a prayer, it will be immediately answered.  One thing that I am better understanding through the journey, is that a Sovereign God is one whose sovereignty you may not understand, but must accept if you are to find any joy at all in the journey.

That's where the rainbow comes in.  I saw it at the beginning of the trail.  I took a picture so once home I would be able to see if it really was one right there beside me or if my sleep deprivation was catching up to me. I've walked that trail dozens of times and have never seen something like that.  I knew what all I wanted to share with God, ask God.  God knew too.  I guess that's why he placed that rainbow right there before I could begin so that throughout my walk I would be reminded of His promises. Be reminded that though at times I feel like I'm alone, I'm not.  He will always be there to wrap me in a rainbow of His HOPEISM.  I like that about God.  He knew I would know that I will most likely not get the answers I seek any time soon, but he wanted me to simply know that He is the answer.  That rainbow....   His reminder of HOPEISM.  His comfort for my fears.

I walk the Nature Trail alone because that is my time with God.  To listen to my worship songs and just sing them to Him.  In thanks.  In blessing.  In awe.  In total humility.  I have to be out and away and have that undistracted time where there's no facebook, no laundry, no trying to drown out the making of my grocery list so I can focus on the reading of my prayer list.   When songs come on that invite prayer, as in the song "Lay Em Down" -- I do just that.  I did just that this morning.  And boy was there a lot of laying down to do.  Oh how I 'slammed down' with tears a few things that have been such bamboozlements in my life lately.  Things where I know God has a plan, but I am so discouraged and confused in that what is going on right now cannot possibly be that plan.  Oh how I'm praying those setbacks and disappointments are merely but a growing process portion of that plan. And then there's the realization that what if the plan and desires we have, are not God's plan at all?  How could I possibly ever accept if His plan is different than ours, that whatever that plan is, will be more perfect than the thing we most wanted?  How can God have something better in mind than the thing you most want with all your heart, soul, and mind?  I laid that all down to God.  I continued to walk.  Continued to smile at the rogue rainbow I saw, and continued asking the questions I know that I will not immediately get an answer to.  If ever.  How.... How can where we are now be that plan to prosper us...  We were created for more.  We want to do more.  We can do more.  I prayed that for each of us in Team Guppy.  I prayed that for an entire autism community.

And I do leave those things at His feet.  But I think what people outside of "Life with Autism" do not get, is that there is still a cross to bear in that.  Laying something down at God's feet means that you know only God has the power to deliver that prayer.  Relieve that burden.  Heal that illness.  But in believing that, there is still doing to be done.  I read a blog recently from NDCQ where he is sharing how positive thinking is a big part of success, but that positive doing is what allows you to succeed.  You can sit in a dark room all day long and think positively about the light being turned on.  But until you get up off that chair and turn it on, it will still be dark.  I think in the Christian community there is way more thinking about the light than actually turning on the light.  We're lit up pretty brightly from our Bible Studies and our fellowships and we help light the darkness thousands of miles away, but what about our brothers and sisters around us in our communities who are suffering from chronic illness, isolation, and fatigue.  Are we only sitting in our churches praying for the light to turn on for them, or are we actually getting up and turning it on by helping to be that light for them?  And I think in the autism organization community, there's way too much changing the light bulbs to blue to distract from the fact that they've never even turned on the light to directly help any of us in our dark.  I don't mean any negativity or condemnation in those words, only to share the stark reality of those words.  I have more e-mails of parents in my community needing help, than our community is helping with. And then there's the warrior mom's and dad's -- faithfully fighting, faithfully doing.  Always...

I think what has totally caught up with me, is how Life with Autism is an unbearable weight carried by many, relieved by only a few.   It's an unthinkable amount of doing, no matter how much positive thinking or warrior mentality we are doing it with.  And doing it with no breaks, no weekends off, and for so many, no, or too few and far between, -- vacations to get away.  For many, they do it with no sleep.  Advocacy in life with autism is an even more unbearable weight.  One where you just can't sit in the room and wish the ugly away.  One where you must get up, put on your war paint, and battle it until you obliterate it.  There is such sacrifice in that, a toll that can't be quantified.  I just don't know how people do it without believing in the power of a God who makes that unbearable weight, bearable.

That night and day difference between chronic and acute illnesses has just astounded me this month.  How so misunderstood it is.  And I know there are many kinds of chronic illnesses, but I can not think of any more inclusive than autism.  True autism, not celebrity or neuro-diverse or self-advocate Asperger syndrome.  The kind of autism my son has where he cannot read, write, or speak.  Where he is in pain and can't express it in any other way but self-injury.  Where he has seizure upon seizure and because what he has is so complex and controversial that traditional medicine tries to revise it away because the reality of what "it" is, is something they aren't willing to even acknowledge.  The kind of autism where he is in constant motion and in need of constant supervision because he is a constant flight risk.

And yet as I walked the Nature Trail this morning, I was reminded in that even though we lay down those prayers and those burdens, and even as we carry the cross of healing and advocating for our children, there is such purpose in it all.  Trust me, each in their own way, we parents who have children, youth, and adults who are severely affected by autism, know the good.  We see the blessings in things they have taught us versus what we've tried to teach them.  How else do you think we can survive?  One of the worse things you can say to such a parent when they are overwhelmed, is "think of the blessings.....".    How else do you think we survive such isolation, such expense, such setbacks, such enormity of how autism affects each aspect of our life, our marriage, their life, their future?  It is only those things, and the HOPEISM of good things to come, that keep us going.  I guess that's why when walking I find myself saying out loud, "I went to Hawaii last year!  I climbed down a volcano crater and then back up to the summit of the volcano to watch the sun set through the clouds..."   In all the prayers that weren't answered, in all the disappointments, I had that.  I had many little things, but they are sometimes dwarfed by the very big things of "Life with Autism."  Hawaii didn't cure my son's autism.  Didn't make me any richer to afford new and better treatments.  Didn't take away the daily stress or fear of the future.  It simply allowed me to escape autism.  It allowed me to experience my unimaginable.  It was something I would have never imagined, it was something I really did do.  I still marvel at that. It was my rainbow at a time I needed one.  Just like today's rainbow was.

I still have the same yet-to-be-answered prayers for those in Team Guppy.  I still have the same frustration in not understanding the interim of what we hope and work for, and what God's will in all this will be.  And I still bear the incredible weight that many of us in the autism community bear -- in trying to right a very big wrong in what has created the most horrific epidemic in my lifetime.  In trying to overcome with truth, some very deeply rooted lies.  And still no one but us, will ever fully understand any of that.  What NDCQ is, what Never Quit means.  How chronic, chronic really is.  How we can keep dreaming and daring and doing.  Others will read things such as this and assume we're depressed or are having a self-pity party.  They will tell us to "count our blessings" and shallowly, yet in all sincerity, say that they're praying for us.  But much like the story about positive thinking, for those of us living with chronic, lifelong situations such as "Life with Autism" -- what we really need in addition to prayer, is more people getting up off the chair to help turn on the light switch.  More people trying to imagine a day in our shoes and thanking us for helping to prevent them from having to lace their own up when autism comes knocking at their door and snatches their child.  More people asking specifically how they can pray for us, our children.  Asking what they can do for us like what Hawaii was to our family.  A chance to get away.  A chance to see a dream come true.   An opportunity to do what has been unthinkable so that we can come back with fresh wind and fresh fire to tackle our seemingly impossible with the renewed HOPEISM of possible.

I had so many questions this morning, such heartache for all who are hurting around me.  I needed encouragement from the One who encourages.  I needed it for me, and to give to those like me who are hurting and who are tired of the chronic-ness of autism.

I guess that's why God sent that rainbow as an answer before I could even get to my many questions. 

And why He sent a Savior before we ever knew we needed one.

I just love how God works like that.

~~~~~~~~~

Life with Autism is black, white, and gray.  The chronic nature of the illnesses our children, youth, and adults bear is not neat and tidy as we tend to want everything to be.  It is hard and it is messy and it is tiring.  To those friends of mine living that life, I pray for you a rainbow of HOPEISM to encourage you through it.  To be that answer to the questions and the comfort to that fear.  To those around me and around those friends, who aren't living life with autism, I ask of you to pray for how you can be someone who gets up and helps turn the light on for them, in whatever way you can, with whatever gift you've been blessed to help with.

To those who have not just prayed, but who got up and helped turn on the light for my family, I thank you so very much.

Our Old Fashioned Christmas...

I bought myself a Christmas present.  I've always wanted to make some sort of "family tree" where I could be surrounded by all our past and present family members. Some stencil of a tree on the wall with pictures as the leaves, or just a Christmas tree left out all year with family pictures as ornaments.  But alas, in "Life with Autism" there is seldom time for such projects.  I'm still working on getting family pictures in a stand up wall divider frame thingy that I bought months ago.  I actually started to add some here and there, and my husband was like, "Don't take those pictures off, (that came with the frame) those people are like family now that they've been with us so long!

Well, I found this revolving ornament tree online, and knew I had to have it for my "project."  It was perfect.  For Christmas, the plan was to go and buy an ornament that to me, represents each family member.  So that when I see that ornament on that tree, I would think of them.  Then for the rest of the year, I would take the ornaments down, and replace them with a hanging picture of that person.  I give myself about a year to get that done!  Ok fine, two years......

But since I'm crazy, mad, weird me, I wanted to make it something more.  I do not like the concept of funerals.  I'll just blurt that weirdness of mine out there.  Seeing someone in a casket the way they never looked in life, is just wrong.  Saying kind things about them that 1) they can't hear, and that 2) you've never said to them when they could hear you, is just wrong to me.  So the past couple of Christmases I have begun taking time to send a Christmas letter to those who came to mind as to being a special blessing in our year.  A yearly eulogy if you must.  Just sharing with them something that blesses me about them.  I just, want those in my life to know how I feel about them while it counts.  And what a gift that is to receive - encouragement from others. 

It was such fun.  Going out to the store and really thinking about the person who I would buy an ornament for, what would represent them, and then coming home to write a Christmas letter to them about why I chose that ornament and what that person means to me.

For our Christmas -- when my Navy-son and his wife came home after Christmas, I invited her family and ours over for our Christmas dinner and to do this Christmas project.  I had 15 or so Christmas bags that had an ornament and a letter in it.  I cut out enough strips of paper with numbers on them, one for each of us.  After each number was written either "Past" "Present" or "Future".  Meaning that when each drew a number, when it was their turn, they would share a story of Christmas past, Christmas present, or a hope of Christmas future.  It was a time of "Old Fashioned" sitting around the campfire telling stories.  Not doing anything, not watching anything, just listening. Just really getting to have a glimpse of someone else's life.  Hear their story.  I cannot tell you what a blessing it was.  Such a time of love, laughter, and tears in sweet remembrances of Christmas past.   Thankfulness of Christmas present and all who were with us.  Some people who I've never really heard share any story, shared the most touching of stories.  Some stories I had forgotten.  When it was my mom's turn, she had Christmas past and shared about how one year as a single mom she couldn't afford a Christmas tree for my brother and I.  I was working at the Dairy Queen, and she said one night before Christmas I knocked on the back door, she opened it, and there I was with a Christmas tree I bought for us.  She said that was the year I saved Christmas.  I had forgotten too, that one year many Christmases back, my father-in-law had written each of us a letter asking about our salvation.  He had "Christmas future" beside the number he drew, and he shared again how it was his prayer that each of his children and grandchildren would be born again so that he would be with them for all Christmases in eternity.

After everyone shared their Christmas past, present, and future story, they could open the ornament from in the bag with their name on it and hang their ornament on my "family tree" while I read a letter to them that would be their gift from me, that shared why I chose that ornament for them.  It was such a sweet time of lifting each other up. 


My brother and his wife - the "Holiday Hug" Raggedy Ann and Andy ornament to symbolize their triumph over a rocky start to their marriage.

For the below ornament, a family member had shared last Christmas when we made "Names of God" ornaments for my Log Cabin tree, how he was so thankful for how the Lord has saved him from past mistakes.  His ornament for my Log Cabin tree said simply, "Savior."  So I found the "Wonders of His Love" ornament for him.  In the letter I wrote to him I shared how one of the greatest wonders of God's love for us, is indeed how He saves us, forgives us, provides a new future for us....  So very many are the "Wonders of God's Love" in that! 

For my Navy-son Matt, his ornament was Superman, and in his letter I shared about how proud I was of him for all the "super-human" things he has accomplished.  Truly, the boy has been Superman in all he has done. 

The time it took sitting at my desk each night in writing a simple one page letter to them that would be their "gift" from me, was just a precious time.  A time to really think about that person and pray for them, and write something to them that would hopefully be a blessing to them.

I pray that God will impress upon my heart more creative ways to do that each year.  Allow the gift to be words of encouragement to others that will last a lifetime.  A way to keep Christmas "Old Fashioned" in us all sitting around the room telling stories of Christmas past and present and our hopes and prayers of Christmas future.  Sharing of ourselves, something money can't buy and that is such a priceless gift, versus simply giving what money can buy that will be soon forgotten.  I am so thankful to God for impressing upon me the idea to do Christmas this way.

Perhaps the perfect ending was this last ornament.  "A Charlie Brown Christmas" ornament that to the person it represented, represented the simplicity with which they live their life. That person has little money, few things, and whose clothes he possesses could probably all fit in one suitcase.  That person whether they knew it or not, taught me how you don't need things.  He has done well with only the few things he has.  I want to be like that.  I want Christmas to be that.  Back to the basics.  Old Fashioned.  People sharing stories, not always presents.  Memories being made, legacies being solidified in the stories told.

I thank Brandon for perhaps being the Angel God used to impress the Old Fashioned Christmas desire in me.  When there are no gifts to give the child who knows not what a gift is, as the Drummer Boy sings in that beloved Christmas song --- you simply give of yourself. 

"And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'till his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas, perhaps, means a little bit more.” 
 

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

And then... a few days after we did our "Old Fashioned Christmas" - Team Guppy 1.0 went out and came back with this cross ornament and a sweet letter to me - so that I could be part of the family tree as well.........

Of Idiocy, Indifference, & the IACC...

Warrior Mom's of Autism are pretty potent.  Everything about them multiplied over typical mom's.  You could probably get by with lame excuses of being too busy in not helping with a bake sale or something, but with warrior mom's and advocacy, that ain't gonna fly.  When warrior mom's ask you to do something, you don't tell them you're too busy.  They'll laugh at you if they don't smack you upside the head first.  No, when a warrior mom asks you to do something above and beyond the above and beyond you already do, - you simply find a way to do it.

That's what the warrior mom's who went to Washington, D.C. did. They asked me to go to Washington, D.C. with them to give oral testimony at the IACC.  I went over my list of excuses why I couldn't, then abruptly had to quit because they had the same ones, they're autism mom's too, yet they were going.  Then I came to a big one that I thought would for sure get me out of it "smacked-upside-the-head" free....   Money.  I simply had none to even justify using to go.  So I told them I simply couldn't afford to go.  Even that didn't stop them though.  They proceeded to plan our trip.  In my brilliance I thought I would play chicken with God, I guess you would call it.  I told Him that if He wanted me to go, He would have to send me a ticket to go.  Note to self:  Never play chicken with God.  He'll call your bluff.  

A business person in the Autism community who I have met at different conferences and resource fairs over the years, bought me a ticket. So, off we went to Washington, D.C.  I want to share that though I am writing this from my perspective only, there were other parents who made the sacrifice to be there and who shared their testimony:
Carolyn Gammicchia
Carol Fruscella
Dawn Loughborough
Megan Davenhall, who read the written testimony of Lisa Joyce Goes

What was so surreal for me in even being there in Washington, D.C., is that the last time Carolyn, Carol, and I were there together, was for the 1st Autism Rally & Congressional Hearings on Autism.  Thirteen years ago.  That we even had to be back there still fighting the same exact fight, was very sobering.  Depressing really.  Will the next time we all converge there be when we're in wheelchairs?  I pray not.  But make no mistake, the caliber of women I was with that day in April 2000, and that day on November 15, 2013 -- is that if need be, we will be.

That's what gives me HOPEISM.  Knowing that despite any differences we each may have in what our child needs - we will find a way to join together, putting all those differences aside, to collectively fight for our children.

Our adults.

When I was last there, my son was a child.

In January 2014, he will be twenty years old.

Which is precisely what saddens me most regarding the autism community.  How lately so many are attacking "their own" so to speak.  Using their brilliance and talent to repetitively attack a select few over and over, accomplishing absolutely nothing but further weakening, further dividing, a weakened and divided autism community.  I sat in that room at the IACC meeting wishing that person were there with us, truly investigating each person in that room who needed to be investigated. Which was most of them.  Using his time, talent, and brilliance in writing to help in the battle of us against them.  Not pitting us against us.

So much time spent in "An Open Letter to ......"  Then because some other organization didn't agree, their own "An Open Letter in Response to......"   How such waste of time saddens me.  The clock is ticking in my life on earth to care for my son; and for groups that claim to represent us to spend such time in wasted effort just tips me closer to the edge of insanity.  I want this to be my "Open Letter to All Y'all's" that says "STOP".  Stop wasting time and effort. We have an autism crisis.  To sit there and nit pick to cover all politically correct bases is a waste of time.  There is room on this autism battlefield to accommodate all who need what they need.  If someone wants a cure, they deserve it.  If someone doesn't, it doesn't need to be forced on them.  "Life with Autism" for my son is a silent, painful disorder.  One that yes, has brought such joy and meaning to our life, but one where my son is very much in need of medical treatment.  Medical healing for him to have the chance one day to talk.  To advocate for himself!  Autism for him isn't an alternate lifestyle where people must simply accept him and adapt to his quirks.  I do not want to, nor will never, view burning hot lava spewing out of his ass as something to accept.  I will never think that in advocating for my son, that he would rather me just accept his seizures that have split open skin, broken bones, shattered teeth, and landed him in the emergency room more times than I can count, as part of who he is.  No, I will watch how he must suffer and know in my heart that that is not the lifestyle he would choose to live.

What I share is my perspective of being at the November 15, 2013 IACC Strategic Planning meeting.  If you want facts and numbers and specific people who said what - I urge you to watch that meeting.  It was truly eye-opening to me, someone who has never been to one before.  And as much as I hated to go and give oral testimony, I honest to God want to be at all further meetings. If for nothing else than to be a presence of truth in a room full of lies.  Someone representing our truth must be at each of those meetings giving oral comments and sharing the truth they refuse to see.  All of us, for every meeting, must make the time to submit written testimony. 

That's perhaps the short version of my take from the trip.

The IACC...
To find out what that stands for and what the role of this committee is, click here.
Parents who care for children, youth, and adults who have an autism spectrum disorder diagnosis, I beg of you to familiarize yourself with this committee.  Take some time to browse through their website and listen to previous meetings.  Read about who is on this committee.  And always, always submit written testimony to be included in the meeting.  So very many of you said that you submitted written testimony, but it wasn't included in the handouts each member received.  You must clearly indicate in your submission to them for specific meetings, that you want your written comments included in public input as written testimony to be made available to each member of the committee.
IACC Website
Public Comment Guidelines

I think one of the first observations was from my friend Carol.  She wrote in my little Mickey Mouse notebook, "We are sitting at an IEP Meeting for this committee and no one can agree on how to write the goal."

What they were trying to accomplish is to put together their strategic plan that would justify  their thirty minutes of wasted time in introducing themselves to each other when the meeting started, and the millions upon millions of dollars spent in doing absolutely nothing of value.

Please click here to read all seven questions they are to answer in that strategic plan.  I kid you not when I say that the five of us parents who were there that day, could have answered those and found studies already done that illustrate our points.  Most autism advocates and parents could, and that was so depressing to hear them all go back and forth among each other and all their fancy titles, and know that they are the ones in charge of helping my son.  When each of us parents in that room knew more than them regarding those questions.

Perhaps to me, the most poignant illustration of that is their "Question Three" -- which is:
What causes this (autism) to happen and can it be prevented.

Not.One.Mention. of toxins, poisons, GMO's, the nutritional deficiency of non-food fast food, vaccinations.

Not.One.Mention.

I wanted to cry.  This committee with millions of dollars to truly make a difference, truly help, and not one mention of any of the things that have been proven independently to trigger the biological dysfunctions that cause a diagnosis of autism for so many.

You know what IACC, here's your answer to that question...  Toxins in vaccinations, Poisons in our environment, Genetically Modified Food, fast-food, processed food, multiple vaccinations at once -- all contribute to the epidemic of autism.  To prevent the possibility of your baby being adversely affected -- remove all toxins from vaccinations.  No multiple vaccinations at once.  I would say to not vaccinate, but we'll start with baby steps.  Ban GMO's, eradicate Monsanto's poisons in our environment.

Parents -- not one mention of any of those things were spoken.

Not one.

I hope this puts fear in each person reading this.  Parents must stand up for the health of their children as we did that day.  If we were each not there and in some way mentioning those things, it would not have been mentioned at all.  And that scares me.  Tremendously.

Parents whose children are receiving special education services in the public school, the person representing the Department of Education wasn't even at the meeting.  All of you who are battling schools, who have children who have been in some way bullied or abused in schools, no one was there to represent you.  Not one mention of special education services.

This is where I beg God to have me win the lottery.  I want to be able to be at every IACC meeting to answer their "Question Three" over and over again.  All of you must be submitting written testimony if you can't be there in person, in answer to questions three.

I think at one point in the discussion of the cause of autism, Insel shared about an App for Parkinson's that helps diagnose it based on speech patterns.  He wanted to know if there could be an "App" developed that would diagnose autism.

I can see it now.  "Autism, there's an App for that!"

You know what Insel?  The "App" for that would be that any mother going to her Pediatrician's office to vaccinate their baby - would have an alarm sound that would say, "Danger!  Autism potential!  Tear the consent form in two and walk away!"

There's your "App" for Autism.

It only got worse after that.  One highly initialed 'expert' suggested that we could track mother's based on their cell phone to see where they go -- as some way to determine the cause of autism.

The only tracking that must be done, is who is vaccinated, who is not, and who is healthier.  That question has been asked, and answered, in other countries, with the result being that the unvaccinated are healthier.

That is the tracking parents in this country must demand before they ever consent to another vaccination ever again.

Insel also asked what yard line they are on in identifying autism.  He asked if we are on the 30, 40, etc yard line.... 

Insel, you, and the IACC, aren't even on the field.

In identifying it, treating it, let alone doing all that can be done in helping to prevent the biological devastation to a child's body from it. 

You have no clue.

It was then oral testimony time, and all five of us did very well in the delivery of our comments.  I was so proud to be among such women of strength who stood up and spoke the truth.  Who made the sacrifices to be there.  The teamwork of one person who could be there, sharing the testimony of someone who couldn't be there.  God gave me the strength to get through mine, and the boldness to stare down Boyle and Insel during parts of my testimony.
Click here to view my testimony.

I couldn't take any more after that.  I was physically drained from being in the presence of such disdain and disregard for our children's health.  There was a presence of such lies and corruption in that room.  It's hard to put into words.

My friend Carolyn stayed until the bitter end, and from her recap I know I didn't miss much.  When she shared that one of the members made reference to how perhaps our children could "grow out of it" - I knew I would have been arrested had I been in that meeting.  That Carolyn shared that studying adult issues or services for autism was underfunded by that committee tells me that they even further have no clue.

As I said in my testimony, there's an entire generation who will "age out" of public school/services and who will have no where to go.

I don't want this to be a feel good blog.  It's not.  It must be sobering to each who read it because there is much work to do and there are no excuses for anyone not contributing some part to doing it.

That committee must have parents there at each meeting to be that elephant in the room.

To speak the truth.

Those handouts they receive must be in the hundreds with regard to public comment received as written testimony.

Congressional Hearings are coming up the fist of December, from now until then each parent must be writing to their Congressman or woman with regard to that "Question Three" in what causes autism and what must be done to help prevent it.

Please, I beg of you, CLICK HERE and make your voice heard.  Please support the efforts of so many who are working together for our children.

That night after the meeting, Carolyn, Carol, and myself went on a monument tour.  We needed to just do something fun and for me, try to put aside the depressing reality that is the idiocy and indifference of the IACC.

But the whole time we were on that tour, I kept wondering if it was worth it to even have been at that meeting.  We were but five in a room full of so many who out initial us and who have the funds to out spend our truth and perpetuate their lies.

Then we came to the last memorial.  The wall.  That sobering wall with endless names etched in it.  It was fitting that it was dark, and cold, and raining.  It fit my mood after being in the presence of such dark and cold indifference.

I just stood there and could do nothing but touch the names.  I don't know anyone listed on that wall.  I will never be able to relate to what any of those names went through, except in wondering if they thought their sacrifice was worth it.  I was sure pondering if my insignificant compared to theirs sacrifice to attend that meeting was worth it  If what I said would make any difference.  When they left to go fight a war that perhaps they never wanted to fight, did they wonder if anything good would come from it?  Did they think they should just stay home and let someone else do it?  If they could come back and stand there as I stood there and touch their own name, would they be proud of how they gave their all, or simply regret that they did?  If they could do it all again knowing their outcome would be the same if they did, would they?

I just wanted to cry as I am now in writing this. 

I honor them by saying yes.  It is worth it.  Fighting a battle worth fighting is always worth it, no matter what the odds, opposition, or outcome.

We honor them by never forgetting their war.

We honor our children by Never Quitting our fight.

The November 15, 2013 IACC battle is over. 

The next battles are just beginning.

Please be a part of them.

Congressional Hearings on Autism

January IACC Meeting


To HOPEISM!

HOOYAH!


~
written by Michelle M Guppy

Standing in the Shadow of God's Glory

Well, this is it!  A third trip to Washington, D.C. to advocate for my son who is severely affected by autism.  My first trip was for the 1st ever Autism Rally and Congressional Hearings  thirteen years ago, in April of 2000.  The second trip was "The Power of Truth" rally regarding vaccines.  This one, to hopefully indeed have time to give my five minute oral testimony to the IACC.

Let's hope this time "13" is a lucky number.  Though I don't believe much in luck.  I believe in HOPEISM, and I have great Hopeism for this trip.  Despite what a gut-wrenching-anxiety-driven-panic-attack hardship it has been in preparation.  I hate to travel.  I hate even more to speak in public.  But when my long-time advocacy warriors urged me to go, I found myself telling God that if he wanted me to, he would have to provide a way.  I simply "ain't got no funds for that."  And, he provided a way.  Someone bought my ticket.  It seems the right time to go.  There is momentum building - many "autism" things have recently happened last week in Washington, D.C., are happening this week, and will be happening in the near future.  Oh, how I "HOPEISM" that change is a' comin'.  But, that does little to make my going there any easier.  I still would rather not, and am kinda counting on an appendix to burst or something minor, fully recoverable, and within the scope of the travel insurance parameters for full refund, to happen before I leave!

(smile)

The Pastor of my church hit the nail on the head with last Sunday's sermon about Moses.  I feel Moses' pain.  When the Lord sought him out to deliver the Israelites, this was his reply:

Moses said to the Lord, "O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant.  I am slow of speech and tongue."
To which the Lord replied:

"Who gave man his mouth?  Who makes him deaf or mute?  Who gives him sight or makes him blind?  Is it not I, the Lord?  Now go; I will help you speak and will teach you what to say."

And so, on Thursday morning at 12:39 I will board a plane to Washington, D.C.  Me and my stumbling speech and shaky voice will indeed go.  And I will trust that He will indeed help me speak clearly, and in under five minutes, and give supernatural impact to the words I say.  To the words all of us warrior mom's or dad's there will say on behalf of our children who are so severely affected by autism.


My friend Carol who was also at the 1st Autism Rally and Congressional Hearing, messaged me to pray Ephesians 6.  I ask all of you of faith to pray that for us all (in light of autism advocacy) who will be there on behalf of our children.

The Armor of God

Finally, be strong in the Lord and in his mighty power.  Put on the full armor of God so that you can take your stand against the devil's schemes.  For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.  Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.  Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace.  In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.  Take the helmet of salvation and the sword of the Spirit, which is the word of God.  And pray in the Spirit on all occasions with all kinds of prayers and requests.  With this in mind, be alert and always keep on praying for all the saints. 

Pray also for me, that whenever I open my mouth, words my be given me so that I will fearlessly make known the mystery of the gospel, for which I am an ambassador in chains.  Pray that I may declare it fearlessly, as I should.

______

I thank you again for your prayers for me on Friday.  That God's Power, and Truth, and Majesty, and HOPEISM  overshadows everything the enemy would use to hinder me, and simply leaves me standing in the shadow of His Glory when it's all said and done and I travel back home to the family I so love and who make it all more than worth it.

Please pray for Todd as he cares for Brandon and somehow tries to get to work at some point. 

Pray for Brandon that he sleeps.  So Todd can sleep. 

No seizures so Todd can go to work.

_____

Let us run with perseverance...

Every time I go in the garage I see these shoes.

It always amuses me because of how they so symbolize our "Life with Autism" and how so very much has changed since our life became one with autism in it.  I'm haunted by all the negative that autism has brought to our home...  Isolation, Challenges, Financial issues, trying to find medical care, let alone proper, adequate, or exceptional medical care.  Just medical care appropriate for autism.  The list of those negative things could go on and on.  Autism is that all-encompassing.  At least our kind of autism is.

But Todd's shoes make me think of the positives "Life with Autism" has brought to our lives.  They make me smile.  (Ok, once I quit growling from the trail of mud from the front door to the garage.) Smile thinking of where Todd and I would now be if in autism-free yuppiness.  Two careers, two incomes, valuing things over people.  We would never have owned muddy shoes.  We would never have a dirty house.  We would be able to afford maids to clean our house and personal trainers to come to our house and heck, work out for us while we sit by the pool and sip our spirits.  Gah.  I just have to laugh at who we would have become had it not been for autism.

Since we do now have life with autism, we are deeper.  We no longer value the accumulation things, we value relationships with people.  We love dearly our community of friends who have helped us through our Life with Autism.  The prayer partners in our church who have prayed us through our darkest of times of that life with autism.  The few family members who perhaps still have no clue what our Life with Autism is really like, but who stay connected with us in some way -- making us feel less isolated.  We are one income yet have been richly blessed by understanding the true value of money and the true definition of need, versus the shallowness of wants.  We have a non white-glove Martha Stewart house.  It's tidy, but we have cobwebs.  At any given time one can see dust on our ceiling fan blades.  My wood stairwell banister has Brandon's teethmarks all down the top of it.  Our kitchen ceiling has splotches of dried smooshed fruit and applesauce from our never ending supplement taking wars where Brandon most usually wins and the spoils of that victory get splattered on the ceiling.  The white ceiling.  Pretty soon I'll be able to pull off how we are the latest in home decor by having a polka-dot paint job on our ceiling.

Even our clothes reflect our Life with Autism.  I like to think my wardrobe would be vastly different had it not been for autism.  I'd be a properly dressed woman, wife, mother, Christian.  Now, my wardrobe reflects the Warrior Mom of Autism I must be.  I wear mostly Camo & Combat Boots.  Spend just one day in the life of someone who lives with true autism, not the commercial or celebrity autism, and you will see why.  I can't speak for everyone, but for me "Good Housekeeping" has been replaced with medical journals and research abstracts.  That changes you.  It has changed me.  It has changed my husband and I.   To survive autism in our lives, in our marriage, we've had to adopt the mental attitude of a soldier in combat.  From dressing like one to training like one.  Which is where the picture of Todd's boots comes in.  You'd think we have enough crazy in our life with just autism.  But that's another way autism has changed us.  When we get to "have fun" or go on vacation, or even workout -- we do it running a hundred miles an hour with our hair on fire.  Or as Todd does, with combat boots late at night in full Camo running through the woods, though the muddy drainage ditches, being at times stalked and hunted by suburban wildlife.  In the rain.  Oh, that's how we know God truly loves us, when we can do those things we love to do -- running in the woods at night for Todd, walking the Nature Trails for me during the day -- in the rain.  In the pouring, drenching, soaking rain.

What joys we would have missed if not for "Life with Autism."

And perhaps the best way autism has changed us, is in understanding that to thrive, we've had to add humor to all of that.

Lots and lots and lots of humor.

~~~~~~~

Hebrews 12:1
"And let us run with perseverance the race marked out for us...."
Lace up yer shoes ---life's gonna be muddy at times but you just gotta put on your Camo & Combat Boots and run right through it!

My Saving Grace, My Hiding Place, and Who will never let me be lonely...

I need a saving grace
A hiding place
I don't have forever or time to waste
So don't let me be lonely

I wanna shake this winter coat off my sleeve
Dust off a record and just be free
Oh don't let me be lonely
No don't let me be lonely

Those lyrics are from a song by The Band Perry, Don't Let Me Be Lonely.  I think lately they've been my "Life with Autism" lyrics. I have felt at times that I just want to hide from the disappointments.  I don't have forever or time to waste on these blasted seizures that plague my son.  I want to shake the winter coat of "Life with Autism" off my sleeve.  I want to dust off my son's limitations so he can just be free. 

What made those feelings worse is that the other night after he had been sleeping so very well for a couple nights prior - he decided to be up all night.  I had thought I would capitalize on my opportunity to catch up on sleep by taking a Benadryl so that I could get some deep sleep going for once. Bad idea.  I started hearing voices.  At first I thought I was in a horror film with the villian-doll "Chucky" giving me a tour through Alphabet Town.  I kept hearing music and letters of the alphabet and then after brief moments of silence an evil voice saying, "Come and visit the town again, Goodbye!" Over and over again that's what I heard.  When I finally realized I wasn't in the middle of a nightmare or a horror film, yet still hearing that evil voice, I opened my eyes to see just what it was I was hearing.  In my Benadryl-stupor I half expected to see Chucky standing in the doorway smiling at me with his evil blood-scarred face.  But no.  No Chucky doll, no horror movie, no nightmare.  It was something far scarier.  Autism.After.Dark.  It was Brandon in his room down the hall, up at 2am playing with his electronic alphabet game.  In the dark.  As I got up and stumbled to his room to check him, change him, the sheets, and destroy, er hide all the electronic toys, I remember thinking on my walk back to where I was sleeping ---- Why God, why?  Why do we have to do this again?  He was doing so good.  I can't express how disappointed I was as I continued my barrage of questions to God.  Are you there?  Do you hear me? 

I felt so lonely despite knowing that I am far from lonely.  I have a wonderful husband, I have family, I have prayer partners in our church, and I have an autism community of friends.  Friends I may never get to see in person, but who are always a click away.  Yet when it's "Life with Autism" and you're stumbling around at 2am arguing with God in a Benadryl stupor, - you feel alone!  At least I did.  I guess that's why I have to constantly bombard myself with HOPEISM, with Never Quit, with NDCQ.  I have to have a mental attitude superior to my circumstances if I am to thrive in this Life with Autism.  If I'm to survive 2am wake-up calls.  Those times of disappointments, -the things most often not written about or shared about -- but yet that are as profound and powerful as the success stories you do hear about.   We can read all day long about the many hard earned successes and victories in autism -- and we should -- those stories give us hope.  I've shared many stories on this blog of hope in our Life with Autism.  Brandon has come so very far.  But what if you have been on this journey for so long and have done so much - yet still must battle two steps backwards for each step forward?  That has seemed to define our journey for whatever reason.  What Hopeism is there to impart in that?  We tend to not speak of those things.  Those stories aren't as pretty as the other ones. We make it sound like if you do this, go there, and spend that, ---that you too will have those successes.  Many do.  Many don't.  And I think "the don't" stories are just as important.  How you get through those times.  How you still hang on to Hopeism and never let go.  How you never quit.   

Like Sunday...  Oh how I anticipated last Sunday.  I have big goals for Brandon.  Huge.  But for the day-to-day practical goals, I count our days as seizure-free days.  I hang on to the Hopeism of 5 days seizure-free.  That's a lofty goal for us.  And then I sacrifice so much and work so very hard in achieving it.  Watching his diet so nothing triggers yeast to flare.  Spending such great amounts of time executing "Mission: Supplements" daily.  Multiple times daily.  Researching proteins for calories for him and the most pure elemental and amino acid protein powders for him.  Careful not to over-stimulate.  Reading.  Researching.  Praying.  So last Sunday when we hit half a month, fifteen days seizure-free, I cried tears of joy.  No one could be more proud of such a victory.  No one could be more humbled by that victory.  I savored it as any autism mom would savor any such hard fought victory.  I savored it, celebrated it, and then set out to break that record.  Earlier this year we hit 28 days seizure-free.  Almost a month.  We haven't hit that since.  Once we hit a full week seizure free, my goal was then two weeks.  Then a month.  If we can make fifteen days, half a month, then we can make it a full month seizure-free.  I have to live by that kind of Hopeism no matter how elusive it has been these past four years of relentless seizures.  Then Monday morning came.  With it, cluster seizures.  Talk about a buzz-kill.  Laying there beside him in bed that day reminded me of that song again.  I had to laugh, in the song there is a line that goes like this:  Well the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, Don't let me be lonely...  I had to chuckle, the sunrise truly did bring a bitter end to our seizure-free streak!

(But not to my HOPEISM!)

I'm thankful for my faith that allows me to believe in a God who is deeper than my disappointments.  Who loves me through my loneliness.  My greatest success stories in my Life with Autism have been those that had nothing to do with achievement, but everything to do with having an attitude of accomplishment.  And that is really the only thing I have total control of.  My NDCQ coin sits on my desk, and on one side it says:  I can only be defeated in two ways.  If I give up or if I die.   And really, as a Christian, death can't even defeat me, which leaves, "If I give up" - which I won't.  There is such sweet success in that.  Success worth sharing.  That's what I want Brandon to somehow know.  When he screams in pain or convulses in seizures, I want him to know that I may not have been able to fix it or take them away, but I never quit trying to.  That while I couldn't take his autism burden from him, I carried that burden with him.  That's also what I want my "other son" Matt to have seen in my life.  To always see.  That sometimes things don't work out the way you hoped, but you still press on.  You have an attitude superior to your disappointments.

It was so odd being reminded of those things by a Country song with lyrics that in places could be deemed quite depressing.  But for whatever reason, that song cheered me up from recent disappointments, short-lived victories, and regression in areas I thought we were past.  Many lyrics in that song made me think of verses to cling to in those times I feel lonely...  In fact, late at night I've been singing that chorus "Don't let me be lonely" as if in prayer to God...."Please, don't let me be lonely in these thoughts, through these disappointments...."  One morning I woke up after what seemed like only a few fleeting moments of sleep...  I can't tell you that I heard God's voice in the night, I didn't.  But I can say that I know with all that is in me that God did reply whether I heard it or not.  I can picture him looking down and in a soft whisper answering, "I won't...." 

When we give God the keys to our car and the keys to our heart and let him drive, He promises that he won't ever let us be lonely. 

Ever.

He promises:
I will give you rest --- Matthew 11:28
I will help you --- Isaiah 54:4
I will supply all your needs --- Philippians 4:19
I will never leave you or forsake you --- Hebrews 13:5
I will strengthen you, I will help you, I will uphold you with my righteous right hand --- Isaiah 41:10
I will fulfill to you my promise, I will hear you, I will be found by you --- Jeremiah 2
I will direct your steps --- Proverbs 3:5
I will take revenge, I will pay them back --- Romans 12:19
It will be worth it --- Romans 8:28

He is my saving grace:
"For it is by grace you have been saved, through faith - and this is not from yourselves, it is the gift of God - not by works, so that no one can boast."Ephesians 2:8-9

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9

He is my hiding place:
"You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."
Psalm 32:7

He is the freedom for Brandon that I so desire:
"Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom."
2 Corinthians 3:17


When I'm laying there weary and worn as the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, and I'm asking God to not let me be lonely ---- all I need to do is "be still and know that He is God."
Psalm 46:10

I just love that song because it reminds me that I am never lonely.  As in the chorus of that song, He will never let me be, let me be, let me be lonely -- ever.  Not at 2am.  Not on a Monday morning abrupt ending of a seizure-free streak.  Not in the good, the bad, or the ugly.  Not in anything.  Not ever.

"I am with you always, even unto the end of the world.”
Matthew 28:20

There is such HOPEISM in that! 

My HOPEISM that's such a beautiful thing!

HOOYAH
&
HALLELUJAH

Click here to listen to Don't Let Me Be Lonely