From "The Humming from Hell" to "The Applause of Heaven"

I love books by Max Lucado.  One of my favorites in my early days in "Life with Autism" was his book titled, "The Applause of Heaven."   It was based on Matthew 5...

Now when Jesus saw the crowds, he went up on a mountainside and sat down. His disciples came to him, and he began to teach them.

He said:

Blessed are the poor in spirit,
    for theirs is the kingdom of heaven.
Blessed are those who mourn,
    for they will be comforted.
Blessed are the meek,
    for they will inherit the earth.
Blessed are those who hunger and thirst for righteousness,
    for they will be filled.
Blessed are the merciful,
    for they will be shown mercy.
Blessed are the pure in heart,
    for they will see God.
Blessed are the peacemakers,
    for they will be called children of God.
Blessed are those who are persecuted because of righteousness,
    for theirs is the kingdom of heaven.
Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me.  Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.

When I thought about a title for these thoughts I'm sharing, that book title came to mind...  "The Applause of Heaven."   But that wasn't a very accurate description of my thoughts.  They are more, "The Humming from Hell."  I'm sure God would have preferred the former, but he understands me and shook his heavenly head in knowing that I would indeed, choose the latter.

I simply have to ground myself at times and share my thoughts in hopes that anyone else in my situation who is thinking the same things, might be encouraged in their discouragement.  I am a veteran in this "Life with Autism" journey.  My son is nineteen years old.  He was formally diagnosed right around his second birthday.  Give or take a few months.  I've been through a lot.  I've spent a lot.  I've done a lot.   I've had to clean up....a whole lot.  In all of that, the thing that gets me down more than anything else, are stories that aren't accurate to my child's kind of autism.  Stories that portray, "If you do this, you will reap this reward..."   "If you spend everything and go to this doctor, your child will recover as mine has..."  "If you just share this cutesy picture and inspirational saying, all will be well..."   And lately with many blogs I've read, "How to prepare for and get through this or that..."   Be it vacation, doctor visit, hospital stay, etc.   Don't get me wrong, I am very happy for the successes of my friends.  A great part of my Hopeism is lived vicariously through them.  In hopes that my son's outcome could be like theirs.  But what happens if it isn't?  What if you feel as I do, that after reading each success story, I need to have a few minutes of reality rebuttal with my own very different outcomes to their stories?  This is never more real than in the month of April.  I wish I was a bear and could just hibernate in a remote cave somewhere until that month is over!

So many tips on having the perfect vacation with your child who has autism...  We read them all before embarking on our first vacation trip with Brandon.  I'm all for trying anything once, so we did.  We planned everything as perfectly as one possibly could, yet still the moment we landed and walked into a strange house with strange relatives he had never seen, he turned into the Tazmanian devil and would remain that for the duration.  Not that he was bad, he actually endured the unendurable to him as best he could.  But he just couldn't adapt to so many things being new and different.  Sand too hot, sand too sandy.  Sun too hot, sun too sunny.  People too many and way too loud.  Place too unfamiliar.  Our son who has the best balance ever, found himself tripping and falling over everything and everyone.  Our boat and beach experience traded in for driving our son up and down the island in the car until it was time to go back to the beach house where he would scream all night.  Our perfect plans on the non-stop flight back home after a hellish week, were met with a meltdown where I was 'this close' to getting myself arrested on the airplane because my son was having a meltdown on the galley floor and didn't understand "FAA regulations are that he remain in his seat with seat belt securely fastened."  I wished upon wishes that they would have arrested me, whatever it would have taken to get us OFF THAT PLANE!  But no such luck, we had to endure holding Brandon down in his seat.  All I remember of that plane ride home is counting from 1 to 60 over and over.  Each minute knowing I was one minute closer to never having to endure such horror ever again.  Like, ever.  For us, "How to survive a plane ride" would be to never again take him on one.  Or where someone donates their private jet for our exclusive use.

For me the point most missed in autism inspiration, is how one can possibly remain inspired when they've done all that everyone says to do, yet their child is still not recovered.  When they've planned the ultimate plan, and yet the plan still fails.  Often I have to disconnect from the very community I so love, simply because it can become quite commercialized, worldly, and photo-shopped.  Not to mention out of reach.  We've become a nation of "Don't Worry Be Happy" in thinking every good deed deserves a reward and that if you do good, good will be your reward.  That if you get enough good behavior stickers, you'll get a treat at the end of the week.   Hmmmmm, let me recall....  For the last three years of my son's relentless seizure cycle I've done as good as I could, he's been the absolute best warrior he could be, and the only "reward" me or my son has received has been still having seizures.  Back to the question of how you keep keeping on...

For me there has to be more than biomedical intervention, more than respite, more than the perfect doctor, the most stress free hospital stay, and more than the finances to pursue all there is one can pursue in autism.  That's what this is about.  Encouraging the discouraged.  Reminding that having HOPEISM doesn't mean you don't have troubles, but that clinging to HOPEISM helps get you through those troubles.  How Hopeism can deliver where those other things fail.  When you have nothing, HOPEISM can be your everything.  It has been for me.  My HOPEISM is my faith.  It is God's love, hope, grace, mercy, joy, and healing all rolled into one word.  It is the faith that the God who created my son who Pharma has maimed, will always be there for my son. For me.  Faith that nothing happens without His sovereign knowledge.  Faith that there is purpose in our suffering, and in the suffering of our children.  If I didn't have that HOPEISM, I would not make it through one single moment of my "Life with Autism."  Not. One. Moment.  Especially when so many of those moments are in seeing how everyone else has so many successes, and us, so few.  It's my HOPEISM that squashes that guilt in "Did I do enough?"  "Did I spend enough?"  "Did I travel far enough?"  I had a "Come to grips" moment a few years ago when I realized that I must do for my son what is best for not only him, but our family.  I cannot base that on anyone else's decision or financial position.  I am not them.  My child not like their child. 

I'm never more reminded of that than when reading the blogs of other parents whose children, while on the very same spectrum that my son is on, are so very far from my son in that spectrum.  Those whose children can play on their iPAD endlessly in a hospital stay for testing do bring out the jealousy in me.  I know it's still tough on them and the parents to have be cooped up in a room, but if their child can lay in a bed and listen to music or play their electronic games, -- they've got it made as far as I'm concerned!   We've tried a stay in the EEG Monitoring Unit where my son was to somehow stay in bed, the room, with electrodes on his head; and it was nothing short of hell.  Every five minutes the tech would come in and have to glue a lead back on.  When we held down one arm from ripping them off, the other arm would break free just long enough for a good yank.  And there were two of us holding him down and we still failed miserably.  We were to do that for five days.  We checked him in a two o'clock in the afternoon.  We endured into that first night thinking that surely he would fall asleep at some point.  He never did.  There was never a moment he voluntarily laid on the bed, and never a moment where he left the leads alone.  Finally, at four o'clock in the morning, we called the EEG tech in and told him to take the leads off, we were done.  Frazzled.  Frustrated.  And as Brandon would sign, .... FINISHED.  

That's one reason I don't want anyone accompanying me on procedures we must do with Brandon.  They are always equally frustrating, nearly fruitless experiences.   We've decided that we aren't going to put Brandon through some of them ever again, but those we must, like teeth cleanings, scopes to see the status of his bowel disease - SPECT Scans, -- we simply get through as best we can.  As best I can, since I'm the one who is most often the one taking him, -- and as I've shared, without witnesses to my bad attitude in these situations!  I remember one such time I guess my husband had told our friend where I was, which hospital, at what time.  I about killed him.  The last thing I wanted was a witness to my endless pacing, endless rudely asking the clerk HOW MUCH LONGER when it's already been a few hours past scheduled surgery time!  Misery in my case, does not want company!  (smile)    I do exaggerate in that a bit, it was nice to have a calming presence there, I appreciate that someone thought enough about me to want to come be with me through that process; but it didn't make the process any less miserable! 

And to reassure that this isn't all so serious, I do remember a time at a dental procedure where the surgeon was less than fond of me.  I had advocated to the higher up's about the horrendous wait time for my son to be able to get his front teeth fixed that were knocked out from a seizure fall.  The surgeon was not used to strong-willed parents pulling strings I guess...  Before Brandon's procedure she came in the room where Todd and I and Brandon were waiting, and asked to speak with me down the hall in private.  Once in that room she berated me and threatened to cancel Brandon's surgery that we had been waiting over a year for, just because I was a few minutes late in arriving.  Didn't matter that they weren't ready for us anyway, they were behind schedule.  But that was just enough ammunition for her to use against me.  After a while Todd comes in the room all worried as the doctor was leaving.  I told him thank you for coming to check on me, and he said, "I didn't come to check on you, I was worried about what you might have done to HER!"

Ha ha ha -- he knows me well!

This is where humor comes in and plays a huge role in getting through this "Life with Autism"....   Through any such situation of mine that seems to be unlike anyone else's experience, I can always rest assured of three things:  1)  God has my back.  2)  Todd has their back.  3)  Tonya has my bail.

I am simply me, a mother who loves her son just as much as any warrior mom loves their child with autism.  I am a woman who trusts God and puts her faith in Him.  For me, that is what gets me through imperfect vacations and and helps me survive the unsurvivable doctor's visits and hospital stays.  It what heals better than any biomedical intervention ever could.

I will still read other people's experiences that are always far better than mine because their children are far more high functioning and recovered than mine, with gladness for them and a bit on envy from me.  But what I won't do is allow satan to entice me into thinking that it's because I didn't do enough of this or that, or spend enough, or go to enough different doctors.  Their child is their child.  Their level of autism functioning theirs. 

No one should ever feel guilty in any of that.  No one should ever feel intimidated that if they don't do any of that or all of that, that they aren't doing enough.   Because let me tell you a wee little secret...  You can do all of that, spend all you have to spend, and more, and still have a child with autism.  You can do all the interventions there are to do, and your child can still develop seizures, bowel disease, or any other host of things.

And yes, of course, you can do all that and spend all that and your child can one day be recovered. 

You have to simply do what you feel is best to do, with the means you have to do them with.  And you know what?  You can even have a bad attitude in pacing floors in endless hospital stays.  Not everything has to be picture perfect.  You can laugh in the face of having read all the perfect tips on how to survive this or that - knowing that even after doing all that, you still failed to accomplish what you needed to.  The vacation flopped and at the hospital you and your child flipped out, you said 'flap it' and then fled the hospital.  God understands your foibles.  You don't always have to pretend your life with autism is an inspirational quote or think you have fallen short as a parent if you don't have the photo-shopped non-acne faced kid in the autism awareness picture wearing an airman hat, goggles, and scarf -- alongside a cutesy saying implying how he'll be a pilot one day.  I'm sure that kid will.  If he can stand a hat on his head and goggles on his face, then he most likely is on the "spectrum" of autism where those goals would be realistic!  Either way, my snarky-self would so like to post a rebuttal to that picture each time I see it, with a non-photo shopped picture of my supplement-colored drooling son doing what he loves to do, --  lick tires.  In fact, any "autism awareness" picture of a kid wearing anything on their face or head is as far from portraying my son's kind of autism as "vaccines don't cause autism" is from the truth.

Don't get me wrong, I have high goals for my son.  We have him in a school that has even higher hopes for him!  We all do our very best in helping Brandon achieve the most he can achieve.  Be the best Brandon he can be.  I just get tired of this photo-shop autism world sometimes, the implication being that if you just do enough, are good enough, all will be well and your child recovered.  That biomedical intervention will always result in success.  It has helped my son tremendously, but it hasn't healed him.  And it hasn't made him any more interested in sitting still and playing a video game or obsessing with reading the same book over and over for hours.  Things that I long for, instead of the constant 24/7 motion that is my son.  It most certainly hasn't made it possible for us to ever consider a week-long stay in an EEG monitoring unit!  I have so very many friends who have been through it all, have done it all, yet still we find ourselves having a conversation through Facebook at midnight and beyond trying to figure out what more we can do.  Sharing the tears, understanding the suckiness, sharpening each other's faith, -- all while our kids are in the next room still awake and our husbands alone in bed putting yet another check mark on the "how long it's been since" calendar...

For me there simply must be more than a blog on how to.  More than a doctor who knows all.  More than an intervention that is all.  There has to be more than a cute picture or inspirational saying.  For me there has to be HOPEISM.  There has to be the joyful assurance that God does have a plan for me and my son, whether I know what it is or not.  Whether I agree with it or not.  I have to believe in  God and daily seek HIM to better understand what to do for him.  I have to have faith in the God who does as he promised in Matthew 5, and in the meantime continue to advocate, fight, search, right wrongs, and endure for him.  Continue to dream, dare, and do for him.  Continue the "Never Quit" warrior mentality.  Continue to know God can heal my son, even though he hasn't yet.....

I've shared that sometimes I get jealous of others in how it's always so much easier for them.  I wonder sometimes if God gets jealous of me in how I'm always so quick to put faith in what others say to do before I've even fully prayed to and trusted in him to do what only he has the power to do.

So if you're feeling like I have at times, too deaf from "The Humming from Hell" to even hear "The Applause of Heaven" and are just glad to be done with whatever situation or circumstance it was you had to imperfectly endure...if you did as Todd and I did in yelling "HURRY" to the innocent EEG tech to rip those leads off faster so that at 4am on only the first night of a planned five night stay we could bolt out of that EEG Monitoring unit like a bullet from a gun, in total failure of what we knew better than to even try to attempt, ---  know this:

Blessed are those who Never Quit,
   who persevere through obstacles, disappointments, setbacks,
      for they will know the joy of HOPEISM that is better than any HALLELUJAH!

HOOYAH!

Shhhhhh....  Listen, do you hear that?  Look, do you see that?

Forget the applause of heaven.... that's for typical parents.

Warrior Mom or Dad, --- yours is a standing ovation.