Life with Autism

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

Tuesday, April 29, 2014

He's my son...

I like to pick pictures for this blog that stand out and speak for themselves.  Where I don't need many words to tell the story -- just the picture.  Though who am I kidding, I always end up using many words!  Today was one of those days where the picture speaks for itself.  The recovery room of Day Surgery.  Simple procedures made so complicated by autism and sensory issues.  So after a year and a half waiting on a waiting list for a dental exam, teeth cleaning, and x-rays, today was our day to finally have that done. Yet again.  We should have some sort of "Fast Pass" card like they have at theme parks, but for these multiple Day Surgery type procedures we've had to have done through the years, and no doubt will for years to come.  Without thinking too hard, I can count at least eighteen of these types of situations we've been in, and our son is only twenty years old.  No matter how bad or easy they end up going, the result is the same.  My adrenals are shot by the time it's over.  But mercifully, today was different thanks to our entire church praying us though it, an entire autism community of friends praying and wishing us well though it.  It went really smooth.  Which is rare.  It's how it should be, but often isn't.  Todd and I even had moments of crazy, mad, wonderful sitting in the waiting room taking selfies and laughing hysterically at all the bad pictures.  I was laughing so hard I could hardly hold the camera steady, which resulted in a whole other set of blurry out takes!  As I shared in a Facebook post, I'm truly surprised someone didn't ask us to leave.  We were laughing loud.  Which is another rare event in our "Life with Autism" as typically it's Brandon's humming or stomping that is loud.  Not the carefree laughter of us parents enjoying a few stolen moments together. 

But this picture...

It says so much to me as I was standing there taking it.  Todd was sitting there leaning on the bed rail just watching Brandon.  Praying for him I'm sure.  Thanking God for the smooth sailing of the day.  And then Brandon woke up and he was just laying there looking at his Dad.  It was such a beautiful moment to witness.  I'll never in this life know what Brandon was thinking when he woke up and saw his Daddy.  Did he feel reassured that he was there.  Did he feel confused wondering where he was.  I cringe asking myself the question I feel most heartache wondering if he truly knows and understands who we are and how much we love him.  Just what his daddy would do for him.  Some can say they would lay down their life for their child.  Brandon's daddy has.  He has given his everything for him.  This man who is tough enough to attempt the "tough mudder" this year, this warrior who escapes suburban life each night he can to lace up his combat boots to run in the woods through the mud and bushes in the dark of night.  This man who can do anything, fix anything, but who is driven to his knees in prayers because he knows how helpless he is on his own to help his son.  This man who knows that with the demands of autism, he will never be first as he should be.  Never have empty nest for us to reclaim all those years autism has stolen.  This man who will never get to retire because of the lifelong, mounting expenses of autism.

In this month of April, nothing makes me more aware of what autism does to a family than that.  But as I've learned in all these years living that "Life with Autism" - I saw too yesterday in that picture, just how much wonderful there has been in our crazy, mad of autism.  We had moments of togetherness sitting in the waiting room.  Our only respite in weeks spent sitting in the corner of a packed waiting room taking goofy pictures of ourselves and laughing hysterically.  We didn't have to tag team anything.  We didn't have to redirect Brandon, get up and do anything for him.  We could just sit together for more than ten seconds at a time and we could get out more than two words at a time without being interrupted by hmmmmmmmmmm.  We could for the first time in a while focus on our "other" son and the joys and heartaches of his journey thus far.  We could sit quietly and know we each were thinking how thankful we are for how we have survived.  For who has helped us survive.  Blessed by how we have been able to thrive.

 But still that picture.

As this month and all the ugliness, non-awareness, and inaction that was represented by it comes to an end, I look at this picture and am simply thankful to have a husband who loves this boy with all he has.  Who has given his life for him.  Who has given his all in prayer for him.  Who sings this song in his heart to God for him...

"He's My Son"

I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Can You hear me?
Can You see him?
Please don't leave him,
He's my son.

I know that God hears him.

But I wonder when anyone will hear us?

I wonder when April will be different for my son, all of our children?

To our nation, society, the schools, the medical community, government agencies, service providers, and even most autism organizations....

Can you hear us?
Can you see them?
Are we getting through?
Can you make him feel all right?
Please don't ignore them,
They're our children.

Thursday, April 17, 2014

Back to the future.

Apgar 9/10. 

That's as close to a perfectly healthy baby as you can get. 

And the first thing that must change in how we do things if we are to keep our children who were born healthy, healthy through life.

Look at the picture again.  Everything about my son's birth screamed "healthy" - "normal."

He was healthy!

So why? 

Why in the world did I ever allow a medical establishment tell me that to keep him healthy, I would have to inject him with unhealthy chemicals and viruses and antibiotics and neurotoxins?  I wish I could get in my time machine and go back to the past, not allow what I allowed, and then go into the future to see what different outcome I would have. What would have happened had I just "gone home and loved him" when he was born instead of hearing my Pediatrician tell me those words after he was diagnosed with autism?  After all those "well visits" I dutifully attended where my healthy baby was injected with harmful illnesses, which in fact, did not make him healthy, but rather made him sick. What would have happened if I had only gone to my Pediatrician when my son was sick with something that couldn't be treated at home and left to run its harmless course? What would have happened if as a Christian I would have simply believed that God would not have created a healthy baby to need any other immune system protection than what a Mother's breast milk could provide?

I guess I'll never know.

You can scream "vaccines save lives" all you want - but in this day and age of sanitation, healthy food, and knowledge of how to eat properly for optimal health, that simply doesn't fly. 

Right now, vaccines chronically maim more lives than they save from acute illnesses that most would overcome with no lasting effects.

On that printout above that I took a picture of, the rest of the twelve pages is a painstaking detailed chronology of each doctor visit my son had.  You parents of today have it so easy, now most doctor's notes are typed in.  I had to spend hours upon hours deciphering caveman chicken scratch!

* That office visit is dated 1/4 when my son was born.
* The next office visit was 1/14 -- HepB-1 vaccine.
* The next office visit was  2/21 -- for thrush and congestion
* The next office visit was 3/3 -- DTP-1, Hib-1, OPV-1, 1PV-1, HepB-2.  Smiles, occasionally sleeps through night.
 * The next office visit was 5/5 -- more multiple vaccines.  Rolling, reaching and bringing things to midline.
* The next office visit was 6/21 -- more thrush, plus diaper rash, and eczema.
* The next office visit was 6/30 -- for more multiple vaccines and more steroid cream for a worse rash.  Crawling.

He had thrush, yet with no time to recover from that or from the previous visit's multiple vaccinations, he was given more vaccinations and as a result had worsening conditions.

The eczema.  It clearly states in textbooks that eczema is an autoimmune disorder and you should not ever vaccinate anyone with eczema or an autoimmune disorder - yet he was.

The rest of the pages are more of the same.  Ear infections, antibiotics, and my favorite, a fever the day I brought him in for ear infection recheck, and he received three more multiples on that visit.  You don't vaccinate a sick child!  I didn't know that then, but the doctor should have.

After that the diarrhea begins.

His language ends.

Receiving two rounds of MMR vaccinations before 30 months of age is what I believe was the nail in his coffin.

All I can ask myself over and over and over, is, "Why?"  Why did I allow that?  Why didn't I know better?  Why did an alarm not go off and tell me to put the brakes on more insults to his immune system until the first insult was healed?   Why are we taking our healthy newborns and exposing them to things that are anything but healthy?

I guess that's how "Thinking Mom's" are born.  When you start to question.  When you start thinking for yourself.  When you begin doing your own research -- from independent sources not backed by Pharma or the Vaccine Industry.

So that I can sleep better at night, I like to think I allowed that because I didn't know any better.  I didn't.  I had no reason to.  I didn't know anyone with autism.

New mom's today?

There's no excuse.  Ask.  There are so many moms who have children with autism that you know of, who you can ask.  Ask them.  Ask them what you can do different.  What to avoid.  We will gladly tell you.  Research.  There is an abundance of independent information out there to refute the propaganda spewed from those who profit more off sick children then they do healthy children.

With all the information about contraindications for vaccinations, it is each new parents duty to think for themselves before blindly following a protocol that needs to be seriously re-evaluated.  No, not re-evaluated, simply thrown out.

My "mommy alarm" should have screamed loudly on January 14, 1994 when I allowed my Pediatrician to vaccinate my healthy baby against a disease that he could only get if he was sexually active or used dirty needles.  Neither of which is applicable to a ten day old baby.  And even if one day he did either of those things, that vaccination protection would be long gone.

I spent hours scouring Consumer Reports, consulting with friends, doing my own research on the best and safest cribs, high chairs, car seats.  But I spent a whopping total of zero seconds independently researching the reason for, ingredients of, or potential long term side effects of what I allowed to be injected in my child.

When your "mommy alarm" sounds -- don't let anyone silence it.

Because you cannot in fact, go back.

Wednesday, April 16, 2014

Waiting for something different...

I guess my disclaimer on this post should be that I actually did let my emotions calm down for like a week before I wrote it.  This is actually, the edited version from what I wanted to say to what I did say.

Autism Awareness month is supposed to bring me such hope, such help.  But sadly for so many, it does neither.  So I once again find myself inextricably drawn to a personal project that helps me make sense of it all; because quite frankly I find myself wondering if my son really has autism at all by the time other autism organizations get done with this month. I mean, they make it look so glamorous that "autism" can't be what my son has.

According them, my son's autism is something to be celebrated and "lit up blue".   Everyone who wants to help someone is supposed to "go blue" and give lots of "green."

I guess I thought this month was supposed to mean something different.

Perhaps I'm wrong.

With all the celebration, lights, and picture perfect pictures of picture perfect kids - I'm thinking I need to have some more kids, "vax them up" and have more reasons to celebrate.

Perhaps I've just been on this journey too long.  Don't mistake my cynicism for depression or hopelessness.  Credit it for being tired of the status quo.

I can so relate to my son in this picture.  This is what this month represents to me.  It makes me want to hide under a blanket and not come out until May 1st.  I think it rather ironic that it symbolizes what this month does for our most severely affected children as well -- hides them and their real issues.  Their real needs.  It neatly tucks away the fact that we should be mourning the epidemic and protesting the senseless, greedy, misinformed acts that caused this tragedy to steal our children's health.  Not celebrating.

I've never been shy about my faith in God.  For me, my HOPEISM comes from Him, and Him alone.  That is what allows me to see all the good and perfect in my son.  That is what gives me such peace -- knowing there is a planner, plan, and purpose in his autism. 

I've devoted my entire "Life with Autism" blog to sharing that kind of hope, inspiration, encouragement.  That is for everyday.  That is for posting to others each day to encourage them in their journey.

But for this month of April, in this "Life with Autism" I must live, the kind of hope I need comes from action that translates into help.  Help gives hope.  Awareness is action.  Not more facts about autism.

I personally see autism organizations not understanding what April needs to be for so very many of us.  Or if they do, I'm just not seeing it.  It's not about an agenda, it's not about what's popular.  It's not about what will be safe.  It's not about being politically correct.  It's not about any of those things.  It must be about exposing the truth of what causes autism and a national action plan for the entire month that we all can get behind in some way, shape, or form.

So for me, for my son who I promised before a Judge during his guardianship hearing that I would advocate for and care for - I created this blog especially for this month to show pictures that represent certain aspects of his autism that need awareness, action, change.  Because at the end of the day, it's not about having been politically correct, it's not about whether I made friends or enemies, it's not whether I wasn't positive enough or if I was too negative.  It's not about anything but what I did to try and help my son now and for his future when I'm no longer here.  At the end of the day, it's him I must answer to.  Not a donor, not a board of directors, and not a seat on a committee.

My hope is that next year when I have to update his yearly guardianship form, on the question that asks, "Has the ward's quality of life diminished, remained the same, or improved" -- I'll have a better answer than this years reply of:  "remained the same."

As so many prior autism awareness months can answer as well ---remained the same.  The core group of us who gave up an entire year or more of our lives in planning and promoting the first ever Autism Rally and Congressional Hearings - in April - did not do that so that over a decade later, the way we do April, National Autism Awareness month, would remain the same.

Unlocking Autism didn't create their "Open your Eyes to Autism" picture boards so that over a decade later, April would remain the same.  The "A Call to Action" Quilt for Autism Awareness wasn't stitched together from quilt squares submitted from all over the world so that over a decade later, April would remain the same.

If someone in this day and age - in April - needs to know what autism is, they can google it.  We don't need to spend our time and resources going down that path.  It's not a dirt road any longer.  It's long been paved by the 1 in 500.  The 1 in 150.  The 1 in 110.  The 1 in 88.

Today, must our 1 in 68 continue to pave the same road to awareness or can we finally begin making tracks in the grass for a new road? 

Something different.

Wednesday, April 2, 2014

In a Moment's time...

Today is Autism Awareness Day...

I could say so much about that.  And I have.  On each of my blogs:
Life with Autism
Thirty Steps in our Shoes
Life with Autism in Pictures

You can read about our Journey those places.  And if you are a person of faith, you can read how I share our "Life with Autism" and how it has given us a deeper faith through this blog, God's word Day by Day.

But for today, I want to simply share this video.  It is typical of our daily drives home from school each afternoon.  Brandon loves the beat of the music.  He has his favorites.  Typically we listen to Country Music, but when we don't like the songs playing, we switch it to Christian music

These are the lyrics to the song he is rocking out to.  He was literally shaking my car.  And I drive a big car for just that purpose. These lyrics will become much more meaningful to the video once you have read them...

Where I Belong:

Sometimes it feels like I'm watching from the outside
Sometimes it feels like I'm breathing but am I alive
I won't keep searching for answers that aren't here to find

All I know is I'm not home yet
This is not where I belong
Take this world and give me Jesus
This is not where I belong

So when the walls come falling down on me
And when I'm lost in the current of a raging sea
I have this blessed assurance holding me.

All I know is I'm not home yet
This is not where I belong
Take this world and give me Jesus
This is not where I belong

When the earth shakes I wanna be found in You
When the lights fade I wanna be found in You

All I know is I'm not home yet
This is not where I belong
Take this world and give me Jesus
This is not where I belong

Now, watch the video...

Click here to view video

Such happiness in those moments driving home.  No other song that played did he have such a reaction to.

We went home and with it being such a beautiful afternoon, we went out back so he could jump.  I went inside to start his dinner, then heard a thump.  I knew what that meant.  I ran outside and found him face first in the middle of my garden having a Grand Mal seizure.  In that split-second of getting to him and lifting him out of the dirt I can't even tell you what I thought of what this day means to me.  The unfairness of it.  The wrechedness of it.  The evil of it in this sweet boy who was rocking out just a few moments earlier, who was now, in just a moment's time later, face first seizing with a mouth full of dirt.

All I could think of was that song.

So when the walls come falling down on me
And when I'm lost in the current of a raging sea
I have this blessed assurance holding me.

All I know is I'm not home yet
This is not where I belong
Take this world and give me Jesus

This is not where I belong

I can say this.  I am thankful he landed where he did.  I just built that little garden last weekend.  The dirt in it was soft and fresh.  He could have landed a few inches away and lost more teeth on those cement bricks.  He could have landed a few inches above where he did and had his eye impaled with the tomato marker there.

But he didn't.

His head landed in the soft dirt in the middle of that oval garden bed you see in the picture.

I rolled him to a flat spot, dusted off all the dirt I could, and I sat there beside him in the soft breeze on this World Autism Awareness Day and waited for his Daddy to get home from work to help me get him inside.

And as is so fitting on the day people were asked to "Light it up Blue" -- I remembered these lines from that song....

When the earth shakes I wanna be found in You
When the lights fade I wanna be found in You

Those blue lights will fade tomorrow, and nothing will have changed from having lit them.  But everything in the life of someone with autism can change if each person directs their time and energy into something that actually matters and makes a difference.

Watch that video again.  Then look at the picture.  That all happened in just a moment of time. 

Today was that kind of moment in time.

One where so much could have been done by Autism Speaks.

But yet again, nothing of any lasting meaning was.