Thursday, June 20, 2013

Why I'm blogging.

Why am I blogging?

Because when you have a child, diagnosed with a life changing condition, there isn't a rule book to follow.  You don't know what to you.  There is a ton of information, but you have to go looking.  You have to find the right people. The right places.  The right information.  You have to dig, and it's freaking scary.  Meanwhile, surviving with your normal day to day activities, pushing through for all of your children, it's extraordinarily overwhelming.  More than you can imagine unless you've been there.  Making meals, changing diapers, cleaning the bathroom.  Very difficult.

When one day your world is normal and average, and yes, not that easy, but still, you're pushing through and headed down one path, and the next day your entire world is changed, it's very unsettling. 

When you learn that people you trusted (not just individuals; I'm talking institutions) are not trustworthy.

When you learn that what turned your world upside down and what HURT your child, forever, was a decision that YOU made.  That's a hell of a load to carry.

THAT is why I am blogging.

I have been writing a post in my head for a good week now.   Having children with disabilities is isolating.  We don't have as many playdates as we used to have because of our therapy schedule. We still get out and about quite a bit, though, but we usually have a therapist with us, so my socialization is limited.   So, it is hard to not view the therapists that come into your home weekly (or more than once a week) as your friends.   But they're not. They can't be.  They are working.  And I am very very blessed to have a great team of ladies working with my boys.    I am even more blessed to have family and friends who reach out and lift me up, and try to understand.     But it is still an isolating thing.  We don't know a single other child with autism.   Not but over the internet.  Not personally.  There are many who share my story, or similar stories, but they don't know ME.  And I don't know them.    In the day to day of caring for a child with special needs, it is ALL me.   Every syringe of supplements. Every diet-prepared meal and snack.  Every distraction from stimming, and every bit of work all day long on strengthening his muscles and his brain.  It's all me.  How could I not feel isolated?  Every decision I make impacts him in an enormous way.

I have a beautiful, sweet, and smart 12 month old nephew.  He came to visit me this week.  He is so sweet and full of joy and so beautifully, wonderously ....   healthy.  At 12 months he is developmentally on par with Andrew, not terribly far behind Ben.   And while I am thrilled with him, and he is joy to me, and I love him deeply, it hurts a LOT to watch such a healthy little boy.   When my boys were 12 months, they were healthy too.   What I wouldn't give to turn back the clock and make different choices.   I can't help but be reminded of that when I am with him.   And I hate that.  (Ry, Ashley, these are my issues, not yours.)

He effortlessly points at what he wants to communicate.  We just spent five months, FIVE months, teaching my son to point. 

It isn't fair.  I wouldn't wish this on ANYONE.  I will be devastated to know more boys with autism as the years go by; it's inevitable.   But it isn't fair.  We make the same choices as so many other people and Andrew has to pay a price that is way too high.

Isn't he getting better? YES.  Because I found the right people and the right information, right away.  But at BEST, we will have lost a piece of him forever.  And at minimum more than a year of our lives while we abandoned everything else to fight for his future.   Do I appreciate his milestones all the more because they are so hard won? Yes of course.  And we celebrate.  But the cost?

Andrew's milestone dates in my head are not the date that he learned to walk or talk or went to this place or that place. His milestone dates in my head are the date of his sedated hearing test, his diagnosis, his first DAN appointment.   My memories of his babyhood are not of being in love with a beautiful infant, but of a mercilessly screaming infant in pain because his body was already reacting to the poison we were injecting him with.  He wasn't happy for the first 8 months of his life.  He didn't sleep til he was 14 months old.  If you can count 10 pm to 6 am sleeping. 

It's not his fault he's sick. It's mine. It's the world's. 


And that's why I blog.

Saturday, June 8, 2013

Every Day is his Best Day Ever

That's what's happening now.

Every day is Andrew's "Best day ever!". Every single day he's doing more, saying more, looking more, expressing more, laughing more. With every day that goes by we are getting closer to getting him back.

Look at these videos. He spent his afternoon today running back and forth through a sprinkler. No big deal for a two year old, right? Well, this two year old probably wouldn't have noticed a sprinkler two months ago. ANd he definitely would have spent his entire afternoon trying to escape from the yard. Today, he made a few halfhearted attempts, but mostly, he PLAYED.

And then, my friend Jen's cat, he kept trying to look into the cat's eyes, and laughed with glee.

That went on for ages. It never gets old to hear him laugh.

We got Andrew's lab tests back. Next week we go to the DAN for interpretation but preliminarily, he has two genetic mutations that are very very common in kids with autism. Indicates, as I've been saying all along, that he is having problems methylating, processing toxins.

Our whole family will have to be tested.

I'm so happy to have this major, major clue in working toward recovering him.

Focusing, hard, on the little victories that maybe aren't so little: Our Occupational Therapist not believing the changes in him in a two week period since she last saw him. His BCBA pronouncing how he's seemingly at a different level of awareness this week.

The smiles. Oh I am a sucker for that smile.