Seriously Serious

So here's the post that I've eluded to several times.  I will tell about my journey during the diagnosis of both of my boys.  Here is some forewarning: if you are easily offended by honest reactions by a real person....stop reading.  If you are a religious person that has never had their faith waver or think that those that do don't have faith......stop reading.  And finally, if you don't want to keep an open mind and you want to be all judgey about the journey that many of us (Autism parents) are on....do us all a favor and.....STOP READING.

So here goes..... *deep sigh*

Both of the boys were planned.  Strategically planned.  The only issue that threw a wrench in the spacing of the boys was that pesky little trip to Iraq the hubs had to go on.  So instead of 2 years apart it was either around 18 months OR 2 1/2 years.   We chose the former.

When you see that plus sign or two little lines on a pregnancy test a rush of whole new emotions goes through you.  If you have kids, you know what I mean.  When you hear the heartbeat for the the first time of your child inside your womb your mind races with dreams.  Will my child be a girl or a boy?  Will he/she be an athlete like me?  What will he/she be when they grow up?  And etc.  I for one, prayed daily and sometimes multiple times a day for a happy, healthy baby.

When I type that I'm reminded of a session of pre-marital counseling the hubs and I went through.  The deacon asked if we wanted to have children.  Yes, we answered.  He asked us what we wanted for our children.  We said to be happy and healthy.  He asked us, what does that mean to you?  I didn't think much of it then, but what a loaded question.  Especially now that both of our children have been diagnosed with ASD.  Are they happy?  I would say so...I suppose.  Are they healthy?  Well, ASD is not a terminal illness, but are their brains healthy?  I would say no.

When we were expecting SE....it was well....interesting.  I gained 65 freaking pounds.  I drank slurpees, ate Chicago dogs and pretty much anything else I wanted to.  Oy vey.

 

In this photo I'm like 200+lbs.  Yeah, height gives you some wiggle room not to look like a 18 bedroom house.....but I felt like one!  LOL.

 

And then we were blessed with little SE!

 

 



 

 Instant, powerful, unconditional, pure....LOVE.  I.LOVE.THIS.KID.

So when you have your first kid you read all the books, what milestones they should be hitting etc.  SE was on the mark up until 12 mo.  Never suspected anything.  The only tip off...SE was always content to be left alone.  He could sit in his swing and only cry when he was wet or hungry.  I didn't know any better....hey, maybe he was just a "good baby".

Well, like in our Our Autism Story I realized something was amiss about 2 months later. 

The first emotion was denial.  He's a late bloomer.  Yeah, like WAY late.  No, that's not it.  When I first really came to the conclusion about what was wrong with my baby (yes WRONG..there is nothing right about ASD) I was PISSED.  I'd never felt so let down ever in my life.  Ever.  I prayed over this kid from the day I found out I was pregnant.  Why was this happening to us?  God's idea of a cruel joke? But I still believed with faith things would be okay.  God wouldn't forsake us, this was just a challenge we were going to have to work through.  So the last emotion...acceptance.....sorta.

I told the hubs while he was in Iraq and we moved forward from there.  After all, I was going to have C in a few months.  Well, we got stuff started with therapy for SE, moved (PCS'd) and began life with an ASD kiddie.

When you have a special needs child it's like some kind of prereq that you must read 'Welcome to Holland'.  This poem has become the special needs parent's mantra of sorts.  I don't know one SNP (Special Needs Parent) that hasn't read it.  I was automatically inducted into this "club" that I didn't ever think I would be a part of.  Never in my wildest dreams.  If you'd care to read it, Welcome to Holland. 

Being in the club sucks.  Let's face it.  This is a club NO ONE wants to join.  Seriously.  If you could choose......who would choose that?  There, I said it.  No one wants to be in the SNP club. 

No one wants to lose their child prematurely, watch their child suffer, fear your child getting bullied and teased, fear your child will never move out of the house and lead a productive life.  Think about all the monies that must be spent on therapies, toys specifically bought for therapeutic purposes (seriously...do you think I ever would have bought my 2 boys a freaking dollhouse??) and in my case...give up not only ONE career, but TWO because it's impossible to work due to your children's needs? 

Those two Bachelor's degrees are collecting dust. LOL.

So in the 'Welcome to Holland' scheme I'd like to think I haven't really moved into Holland but I've landed there and I'm navigating my way to the baggage claim.

Then in October 2010.....C entered the world!

 

I didn't think that I could have so much love for another child, but I do.  He is my baby boy or as GiGi calls him 'Baby Baby'.  He's so different from SE, much more like me.  This boy makes me laugh and shake my head EVERYDAY.  I.ADORE.THIS.KID.

Now you KNOW I had to have my boys rep O-State!!!  GO BUCKS!!

C was a completely different baby than SE.  Cried all the time, didn't like to be set down, always wanted to be in someone's arms, preferably Mommy.

So imagine my surprise when he started exhibiting signs and symptoms of ASD. 

So this is where the uber denial set in.  No way, not my other kid.  The therapists that had seen C while visiting SE said they would be surprised if he got a diagnosis.  I heard that from 3 different therapists that work directly with ASD kids.  That was reassuring, but on January 31st, 2012 the diagnosis came down. 

BOTH of my kids have AUTISM. 

There is no cure, they don't know what causes it, and every kid will have a different outcome.  Some will blend right in, some won't.

Imagine my ANGER.  Absolute betrayal from God.  That day, in my mind, God disappeared from my life.  I'm a person that has had faith in Christ from a young age.  And I'd like to think strong faith.  But I was broken.  That was the last straw.  I thought....how can someone who claims to care so much about us let this happen to us?!?!?!  Or do this to us?!?!?!  To my kids.  To my family.  What the hell did we do wrong?!?!?!?!  To stricken my kids down with an incurable disorder that will affect them for the rest of their lives?  I was so mad.  I was done with God.  Threw my bibles away, didn't even remotely think of going to church...ever again.  Only kept my rosary because it was a gift from my mother in law when I converted to Catholicism but that got shoved in the back of a drawer never to be seen again.  It was so bad that if Joel Osteen came on TV I cursed God an changed the channel.  People tried to bring me back, but I wasn't havin' it.

That attitude didn't change overnight and I can't even begin to understand why I've come back to God.  I can only say that His grace has allowed me to trust again.  I truly can't even wrap my head around how God has transformed my heart and mind.  I can't say I've fully accepted my path in life and that of my boys.  I don't think I ever will.  I still have days that I think....'what if my kids didn't have Autism'?  I would probably hear a lot more cries for 'Mommy', more questions why things are the way they are, we'd have more money in our bank account and less baby dolls and dollhouses around.  We'd have an office instead of a therapy room and I wouldn't buy toys based on their ability to be used in therapy.

But I have a new outlook.  God gave me these boys because he trusted me (us) enough to give them everything they need.  To give them the love they deserve and to give them every chance at a productive and happy life.  I look at my personality, my quick temper, my analytical nature and the fierce defense my boys and their rights and I sorta get it.  They need a Mommy like that.  They need a warrior.  They need a defender.  They need me.

And I need them.  The happiness I got when SE called me Mom for the first time back in March of 2012 and how I didn't hear it again until September 2012.  When C was playing at the mall playground and turned around and ran to me, acknowledging I was his Mommy and I was his safety....that only happened last month...for the first time EVER.

I look forward to the day SE will tell me he loves me on his own accord instead of parroting it back to me after I've said it to him. 

And this.....the first time he's ever hugged his brother.....EVER.

 

 

He hugged C on his own!!!  Did you hear that?!?!?!  On.His.Own.  Progress!!!

 

He hugs me all the time.  In fact, he requests hugs regularly, but to hug C?!?!  Wow.

 

Time, intense therapy and intervention will tell how far my boys will go.  I have faith it will be far. :)

 

 

Thanks for reading and understanding a little bit of my journey!

 

 

love,

Supermama rosie