Superman...

My Superman.
Looking at the picture of him laying there in the PICU the morning after his surgery humbles me. I find myself using that word a lot... humble, humbles, humility....   I can't help but use that word when it comes to my son.  My tasmanian devil. My hurricane. My roadrunner. My son.

And for this "Life with Autism" - in pictures...  My Superman.

Just the day before he was in for neuro-surgery to implant a Vagal Nerve Stimulator to help control his seizures, or as we're hoping, to stop them.  In August it will be a year of relentless seizures, in a decade of cycles of seizures.  This surgery was our last ditch effort to help control or stop them. When I think of all that Todd and I have been through this last year, and how hard those seizures were for us, I'm even more amazed, and humbled, at all my son had to go through in that.  It was he who was crashing down the stairs, crashing to the floor, crashing into walls, and then crashing in bed for days in recovery from the sheer exhaustion of the seizures.  It was he who had to take all the medicine, not understand what was going on, and re-learn what the seizures took away.  It was he who was taken out of the world he knew, home; and taken to a hospital for a reason he didn't understand, to be whisked away by people he did not know.

It is he who is Superman.

Yes, for the sheer strength he has, but more for the humbleness he is.
More for his vulnerability that makes those around him stronger.
Not so much for all he has overcome, but for all that he has endured.

In the quiet of that dark room I could do nothing but look at him and be amazed.  Oh how I wish others could see my son as the superhero who has changed our lives faster than a speeding bullet. Who has rescued us from shallowness, selfishness, and most of all, ourselves.  I wish instead of the meltdowns, the loudness, and the blank stare that is autism, others could see him as he is here in this picture. The Superman who sleeps peacefully. Innocently. Humbly.

The Superman who bounces back from everything that has ever happened to him, this surgery, as if it never happened to him.

This video below was taken of him on the way home from the hospital.  Neuro-Surgery the day before, kept sedated all night, then on the way home after being dismissed the next day, the song "He Reigns" came on the radio. Watch as he dances in his way to that song.  At around 36 seconds in the video, he does his "Happy Squeal" where he dips his head into his hands and does his happy face.  I started crying when I listened to the words of the song at about the time he squealed with laughter....

And all the powers of darkness
Tremble at what they've just heard
'Cause all the powers of darkness
Can't drown out a single word

When all God's children sing out
Glory, glory, hallelujah
He reigns, He reigns
All God's people singing
Glory, glory, hallelujah
He reigns, He reigns

I'm humbled.

He who to the world knows the least, but yet in what matters in life, knows the most.

My son, my Superman.
Who in his weakness, has Spiritual strength.
Who in his silence, Praises God.
Who doesn't know darkness, yet defeats it.

Every.Single.Day.


Click here to watch video.

~

Thank you Dr. Curry and residents who took such great care of our Superman...

Resilience

Resilience:
 – noun
1.   the power or ability to return to the original form, position, etc., after being bent, compressed, or stretched; elasticity.
2.   ability to recover readily from illness, depression, adversity, or the like; buoyancy.

My word of the day is resilience. As I was sitting here thinking about that word, I remembered taking this picture above.  It was taken a few weeks ago when Brandon was home from school yet again, and we had spent the day on my bed watching Country Music Video's and Barney.  When he has seizures that knock him out, or render him drowsy where we need to keep him from walking, he will stay still on the bed as long as someone is laying there with him.  He had that groggy post-seizure look most of the day - then suddenly he just turned to me and started giggling with that smile as big as Texas.

I'll always cherish this memory because it reminds me of his resilience in everything.  His autism, his not being able to communicate well, his GI disorder, and with his seizures. No matter what the issue has been, no matter how great the pain he's been in, no matter how frustrated or confused he must have felt at times -- he has always bounced back.  No matter how far he's been stretched, he somehow returns to his 'normal'.

I marvel at that.

So many things in our lives, in my life, we think we will never recover from. Sometimes we don't allow ourselves to recover from.  And here is this sweet boy, my son, who no matter what he's had to endure, he's recovered as if it never happened, and laughed again.

Whenever I think I can't handle autism one more day, can't endure watching another seizure, I think of that picture, of his resilience.

Whenever I think of all that Brandon must go through each and every day yet still manages to smile, and laugh...

I will too.

When autism bites...

Sometimes I marvel at the simplicity of Christ's story. Christianity and what it means. Even though I know very well it's far from simple. It is a complexity theologians spend a lifetime 'ciphering. So I won't try to. I'll just relate to it as I can, and hold fast to it as I do.

Like yesterday.

It was just another day in "Life with Autism". I picked up Brandon from school to go to Texas Children's for a pre-op appointment for a VNS surgery later in the week.   Halfway there, he had a Grand-Mal seizure. Somehow I get across 5 lanes of traffic without causing a colossal collision and pull over.  I call the doctor's office to see if we should proceed or abort and try again.  But then with "Life with Autism" - you can never plan for when it will be a better time.  In "Life with Seizures" you can never wait for a seizure-free trip.  It may never happen.

So.... we proceeded on our way.

What happened later when we pulled up to the valet parking area, still leaves me reeling with the whiplash of "what the heck just happened".  It's best described as "Brandon Guppy's A Series of Unfortunate Events".  Events that for the first time in my life with autism, allowed me to relate to the many others who must deal with that often, if not daily.

As a mom of a child with autism, I only have two gut-wrenching fears:  1) Death, and 2) Dying.  Numbers three, four, and five would be abuse, neglect, wandering.  And after yesterday, I realized for the first time that I'm not at all prepared for the issue of what would be next in the list, -- restraint.  Of how to control a child I cannot control.  Issues many deal with daily, but an issue I've never had to consider, let alone experience.

As we pulled up into the valet parking, Brandon started to have another seizure, slid down in his seatbelt, and it got tangled around his head and neck.  He freaked out. And until I could stop the car as quick as I could to go back there to untangle him, he had to stay like that.  And by that time, he was scared and screaming and going into a meltdown of epic proportions.  This 5'9" 136 pound of pure muscle and strength child was on the van floor, half under the seat, screaming and thrashing.  The freaked-out valet driver did the only thing he knew to do, which was go in the ER to get help.  In a split-second three ER personnel and an ER doctor come out.  By that time Brandon is even more upset because now not only was he scared by the seatbelt that had been around his head, but he was in a place he didn't like, and surrounded by people holding on to him. All things that made him more upset.  By that time there was nothing to do but allow them to wheel him in the ER where by that time we had 10 ER personnel and myself trying to hold him and keep him from hurting himself.  There were additional personnel trying to get an IV started to give him meds to calm him, because the shots were not doing a thing.  He was King Kong on a "roid-rage".  The strength of my little boy was astounding.  TEN people, most of them men, could not hold him.  Me, his own mother, could do nothing to calm him.

Do you know what that felt like?

It was unreal.

It was like the scene in "The Passion of the Christ". My son, a perfectly innocent child, was the sacrificial lamb bearing a cross he didn't deserve to bear.  Because we could do nothing to contain him even after an hour of trying, we had to restrain him with leather restraints. There he was on that stretcher, bound, scared, hurt, pleading, confused, innocent.  Looking at me with eyes blood-red from screaming for so long. There I was looking through him to the other side only to see satan, autism, standing there mocking me.  "Look what I'm doing to your child...do you see him suffering...can you hear him screaming...."

Mocking me.

I felt as if Mary might have in that scene of the movie.  Here she was, the mother of the most innocent little boy. Her child. The Messiah.  Surely she didn't deserve to have to walk beside him as the beaten, bruised, bloody boy she gave birth to carried his cross to his death.  Mary, -- the mother of Jesus, a King, a Savior, the God who holds the universe in his hands, -- had no power to stop what was happening!  All she could do was look at the blood-red eyes of her son and feel her heart break. All she could see was satan on the other side of Jesus, walking step for step, mocking her. Mocking the Messiah. "Look what I'm doing to your King... do you see him suffering....did you hear his screaming..."

In those moments of unreality you don't understand God.

You don't understand why that had to happen to Him, why Mary had to go through that, nor why what is happening is happening to you. No, all you can do is cling to the happily-ever-after of the story that began once upon a time on the cross. You must have that grace and mercy of salvation in your heart when you can't see it with your eyes.

You must have the Hopeism that everything will be ok, even when it's not.

Like with Mary, the mother of Jesus, you don't understand how she could have lived through that day.  But you know she did. And because of that, you know you will too.

You don't know how her child could have endured what he did, but you know he did and somehow your child will too.

I guess that's why I believe in Christ's story and the Bible with all my heart, soul, and mind.  It's real. I can relate to it. I can be reassured by it. It's not Bill Gates trying to explain poverty, something he's never experienced.

The Reality of Restraints is something I never thought I would have to consider, something I would have never thought possible in the life of my good-natured son with autism... Something only other people must deal with.
Well, Tuesday I was those other people.  Those mom's with no help and an adult with autism they can't control. My son became a client in a center where the only option was leather straps and medication.

In those few hours in the ER, knowing I was there but feeling that surely I wasn't, I bonded with all those faceless parents who are out there but who you don't see, and who deal with this on an all too often basis.  I felt the pain of all those faceless clients we very well know who are out there even though we don't see them, who are being held down and strapped to a bed and medicated, scared and not understanding why.

The image of yesterday that will forever be burned in my memory is that of my son's blood-red panicked eyes staring at me pleading me to help him, and my tear-filled eyes staring back at him not knowing what to do.

I've thought of it over and over, what could I have done different, and there's not much. I could have asked that they just left us alone in the van for my son to calm down on his own. But he was so far out of control that he was hurting himself on the metal from the floor of the van, and I feared he would hurt himself further if he banged his head in the glass. I knew that as strong as I am, I couldn't hold him down myself to keep him from hurting me, or him, in such a confined space. I could have asked that they just take us to a simple room that was empty except for padding or mats like we have at church for those who do thrash when upset.  But ER's don't have those.  There was no where to take him to just allow him to safely work it out until he calmed down.  They didn't have enough help to allow the people to stay there holding him, there were other patients with urgent needs as well.  Sadly, the only option was restraints, and even then, the ones they had were too small.  No one plans for an adult-sized patient needing restraints in a Children's Hospital.

I had a lot to deal with yesterday in having an adult with autism who is bigger and stronger than me - and what to do if somewhere and that happens again.  And I have no more answers now than I did yesterday.

But what I do have, is another fear for my list to add right after wandering...  Restraints. What happens when #'s 1 and 2 above happen to me? What happens when someone's only option is to restrain him and drug him? When I'm not there to reassure him no matter how futile the attempt?

This may not be a popular writing. It's terribly real and no one likes that.

I sure don't.

But what happened yesterday happened to me. As it does daily to some mom, some where.  As it does to some person, in some facility.

And it breaks my heart.

What happened yesterday is another reality of autism that you won't see in an awareness campaign.
It's a reality that often bites.
And hurts.
And leaves scars.

~

The Reality of Seizures.

This blog entry is not for everyone.  It's not a rant.  It's not a plea for pity.  It is not meant to be disrespectful to any Epilepsy organization, nor any Public Service Announcement type project.  I applaud efforts of all to truly try and make a difference. This is merely my own view.  My own honesty.  My own reality check in "Life with Autism....and Seizures".

Reality that today hit me in how it's so distorted. So commercialized. So watered down.  Much like Christianity. True Christianity is Bible-based and non-disputable. Yet all around me it's disputed. It's distorted. As is morality. True American morals and values of being honest, self-respecting, non-murdering, non-lying, non-cheating morality. Watered down. Defended. Acquitted.  I also see "awareness" in the Autism and Epilepsy world I live in, as something everyone is "so aware of" that it's cute. It's popular. It's a money-maker more than a research-funder.  It's rarely portrayed as a crisis because I guess to show the true reality and true crisis, it would be too horrible, no one would want to watch it.

Try living it.

I guess cute sells. Reality doesn't.  One needs to look no further than a magazine cover to see that.  To this day, and for everyday always, I will respect Kathie Lee Gifford and Hoda for doing their morning segment one day with no makeup.  For that one morning, I felt TV got it right.  Really right.  I'm longing for the day awareness campaigns get it right as well.

Click here to see segment.

Which brings me to this "seizure first aid" video. A very good project, very factual.  Please click on the link, watch it listening carefully, then we'll continue....

Click here to view seizure first aid video.


I guess my issue with awareness programs like that, is that they're not real.  They may be real people, that may represent what a seizure could look like for some, but it's too cute.  It's too watered down.  It's the typical Today Show hostess portrayal.  And not the "no make up day" portrayal of Kathie Lee and Hoda.

I truly feel there's a disservice done in not portraying reality.  I will get negativity from this, and that's ok.  It's never stopped me before, and I doubt it will make me edit a thing here.  People will judge me in showing my son like this, and that's ok too. My reply is simply that reality will help my son, being politically correct won't. Showing seizures that are not too bad to watch, will not help those like me who simply cannot endure watching another real one. But must.

And before you watch the below video of one of my son's real seizures, I want to point out a few things from the PSA video above.

1)  Stay Calm. When you watch the video of my son having this seizure, think about how calm I'm feeling as I see those sometimes daily, sometimes multiple times daily - seizures.  Staying calm is what you do while waiting in traffic. Not something you do when your child is choking, thrashing, turning blue, and there is not a thing you can do to stop it.  My son has had seizures for years. Watching that PSA would make one think I could watch my son's without blinking an eye. As if I was sitting down having tea with a friend.  No.  That's not reality.  Reality is that each one is still the first. Reality is that I cry and beg and plead with God to make them stop, and just know that this one will be the last. So remain calm?  No, I can't say that I've ever done that despite how seasoned I am at watchign them.

2)  Make sure nothing can harm them.

Look at this picture of the hole in my son's bedroom wall.  There is no way you can make sure nothing will harm them.  Seizures happen anytime, anywhere.  To think that you can have a safe environment for seizures is not reality.  No, the reality is that where there are seizures, there will most likely be harm.  This hole in the wall perfectly fits around Brandon's head.  He was standing up, a seizure hit, and knocked him in the wall as he was fallling down.

3)   Turn their head so they won't choke, is what the video says to do.  I think when you watch my video, you will see how well that works.  No matter where I turn his head, or if I can only raise it because he's thrashing too hard to turn him, he chokes.

4)  Time the seizure. The only thing you have time to do unless you are wearing a watch, is count how many years of your life are slipping away by having to watch your child go through that.


5)  And their ending statement "...now you know that making sure someone who is having a seizure stays safe is really not a big deal..."

Watch this video now, and then we'll continue on.


.

Did that seem like not a big deal to you?  Did his expression make you feel that simply being aware of what to do for seizures is "no big deal"?  Did that seem simple to you?  Do seizures seem like "common sense" to you now?  Did that look anything like the cute video you watched first?

Did you notice that there wasn't a "circle of friends" around me to help? No. Because most often I'm all alone when he has one. In the early morning after Todd has gone to work and I have to find a way to get an adult-sized child off a hard floor into a soft bed. I must find a neighbor who is home or call my son from school to help me get him out of the tub because I can't bear to just leave him there until he's able to stand on his own.

What you didn't see in that video, is that he fell backward hitting his head on that tile before I could get to him. What you didn't hear after I stopped that video to help him better, is that for five minutes after it he was choking, gasping for air, trying to catch his breath, - yes, from choking on his saliva despite his head being raised during the seizure.

Reality: I started recording seizures after a Neurologist told me that because they could never capture one on an EEG, that he might not really be having any, it might be simply "behavior".  He's doing that on purpose. Did he look like he was doing that on purpose to you?

Reality.  It's been over a decade since my son's first seizure, and I know nothing more about the cause or treatment of them now, than I did then.

Reality:  Seizures are deadly. My son has nearly died from one because he fell backward under a sprinkler and nearly drowned by the water spraying in his mouth before we found him. CPR and God saying it wasn't his time - prevented that.

Reality:  Is that I feel there is no urgency about them. If they were the flu, something that is truly something to stay calm about, then there would be a fast-tracked vaccine to prevent them.  Lucky for me though, it was most likely a vaccine that caused them in the first place.

Reality:  I'm tired of living in air-brushed-awareness-world of Autism and Seizures that is cute and popular.

Reality:  If as much time, money, effort, intelligence was put into solving existing medical issues like autism and seizures, as was put toward creating more medical problems by making more vaccinations, -- my son's autism, and seizures, would be cured. Or at the very least better controlled, better treated.

Reality:  I'm tired of staying calm.

Reality:  My son deserves for there to be an outright riot to help him.

Question:  Where's the PSA for that?

Treasurers

Today is Saturday. Brandon had multiple seizures yesterday and was hyper today to make up for it. Hyper and still a bit wobbly, not a good combination. He was turning lights on and off all day long. Wanting to eat all day long (while tiring for me, a very welcome thing considering with the seizures these past ten months, he's lost about fifteen pounds).

Finally at 4 pm, I sat down on my bed to watch television while Brandon was in the other room humming to Barney. Every now and then he would wander in my room, and where I was sitting on my bed, he would carefully hand me one of these things pictured. Over the course of an hour, he would just come in, hand something to me, then leave. Very matter-of-fact and deliberate. I'm not sure why, whether he was scrolling commands, "bring me" "put away" "clean up," or whatever...

As annoying as that was considering I had to put all that stuff away, once I got over the annoyance of the constant interruptions and really took a look at all the things he had brought me, I had to laugh.  And I was humbled.  Each one of those things he gave me from different parts of the house, have such personal meaning to me. Each thing some of the most inspirational things in my life, even though some of them wouldn't seem like it. Where I was irritated, he was inspired.

The Pull-up: Yes, my seventeen-year old son still must wear them at times. But when I consider where we were, and how far we've come, I'm blessed. Thanks to the therapists at his private school, he is as close to toileting independence as he's ever been.  Thanks to the GI Specialist who properly diagnosed and treated his "leaky gut" disease, we have the very chance to be as independent as possible with toileting. We have come so very far in the area that simple pull-up represents.  Those two places have given us Hopeism and Healing where no other professionals did.  The Lighthouse: The ceramic lighthouse figurine is one of the few "thing" possessions I have. I don't buy things to decorate. On tables, on shelves, or on walls. We live plainly, simply, sentimentally. I have only those few handmade items or gifts that inspire me. The lighthouse is "Old Barney" - from where I grew up as a little girl in Barnegat Light, NJ.  It reminds me of all things innocent and good. The summers at the shore with my Grandparents, Uncles who were like the father I never had, and my mom. Anytime I get discouraged, I take myself there as a reminder of simpler times when life was not complicated. And I smile.  The Band-aid:  That humbled me the most. That simple band-aid he found on the floor somewhere that he took off his knee, was the day's devotional right there. In just thinking of how much healing has occurred in this house. Each of Brandon's falls from seizures, each broken bone, split open skin; and with Matt, his severed thumb, shoulder rehabilitation, broken foot, stitches, etc.  Oh how God can heal any hurt we have!  Talk about Hopeism!  The pictures of Brandon:  Even in those picture choices he brought, it's ironic how both mean so much in a different way. One picture from school representing the "Dream Team" he had when in Elementary School. The Special Education teachers there who truly got us on the right path of learning. They believed in Brandon, they went above and beyond with Brandon.  The other picture of him at a park. One of the rare pictures where he doesn't have the classic "autism look" that most of our pictures reflect. The Sailboat:  This perhaps one of the most inspirational things I have in my home.  And as if he knew, he carried it so delicately to me. He had to reach high on the mantle to even get that.  It represents a decision I made last year to cast off all anchors that hinder me - to sail on - unhindered - free - renewed - and with a more focused purpose. It was hard to let go of relationships that were fake, hypocritical, and at times mentally abusive. It was hard to abandon being part of things I cared deeply about, but where there is no desire to change, I could not continue dragging the anchor of trying.   Where ignored, I would not pursue any longer. I had to sail on.

These treasurers - these Blessings from God that Brandon brought me - touched me deeply in how God used this little boy bringing me these particular objects, to reassure me that he is in control.  Especially during the times that are so chaotic.  Like that Saturday.

In that imperfect day, with that imperfect child, I was humbled by perfection.

The child I don't understand. Understood.

The God that sometimes doesn't seem there. Is.