Julys update

It's almost as though every event in my life so far was a clue, a stepping stone to the full circle where I have landed, that is my current space. 

When I was in the latter part of my teens I worked in a new age bookstore partially out of pure rebellion against the way I grew up.  Partly for the shock factor.   

And I learned a lot more, incidentally, about my spiritual self in those years than I expected.   I learned to watch for synchronicities.  I learned that there are no coincidences, that I manifest my own truth and purpose.  I learned about visualization and positive energy and true peace. 

Ten years later I found myself revisiting these notions with Oprah (ha!) as I battled some fairly nasty PPD after the boys. 

And I am now deeply and truly depressed, and for the first time in my life it has nothing to do with the chemicals in my brain and everything to do with the fact that my baby is simply collateral damage to the world, sacrificed unknowingly, by me, on the alter of the greater good. And it's simply too much to bear. 

It's a year later, nearly a year since the cat burglar that is  regressive autism started stealing my baby, bit by bit until his smile was gone, his eyes flat, and I knew something was terribly wrong. 

I am tired of explaining why we would have rather gotten whooping cough than autism. 

I am tired of syringing supplements into him 8 times a day, though they are undeniably helping his health, and pulling him out from his isolation, giving us bits and pieces of him back. 

I am tired of worrying every minute of every day how he feels right this moment, and what will become of him.  How much Andrew will we get back? We have already lost a year of what we could have had. When will I stop counting my losses?  

And if I fold and say, as long as he's healthy I am ok, am I dooming him to never fully recover? Am I dooming myself?

They say this is a marathon, not a sprint and that couldn't be more true.  And I have only gone the first mile and I am tired. I want the damned finish line. 

So there's this thing, this program that promises to help me help myself and my autistic son.  It is all about embracing and joining him and reshaping the way you think about the world.

And I dare say my brain could use even more re wiring  than Andrews.  That damned dtap damaged me even more than him. 

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 I HATE IT.

And that's why I blog.

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.

http://youtu.be/onzKUozlJnM

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

http://youtu.be/IVIfysR8DAM

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.

Outside

"Outside" he said to the therapist as she walked through the door today. "Outside!"

"Outside?" She asked Andrew. "We will go outside."  

And we did.  we went outside and hopped in the car and went to tour our police station with our local mom's club.  

Andrews communication has been so outstanding, we are all thrilled.

And then, he proceeded to cry, for the entire hour we were at the police station. You guessed it, he wanted to be "outside".  He cried so much his entire body was bright red, there were real tears coming out of his eyes, I had to use the tissue on his nose. 

I had nothing to distract him, nothing to make it better, because all he wanted was to go outside, and he can finally communicate that need to me, and he didn't understand why he didn't get exactly what he wanted. Because he's two.  

All of the  Autism moms have told me that tantrums will come, to expect this. But I didn't believe them, because Andrew has basically not cried since last summer. He doesn't care about anything enough to cry about it. Until this week.

So, how did I keep my cool for an hour of him crying? I guess because I can see the beauty in it?   Because all it is to me is progress?  To me it shows that his awareness of the world and his ability to communicate our growing, and that is what we are after.

But, A sincere apology to all of the moms and children who had to listen to it this morning!

New highs for Andrew, new heights of crazy for his mother.

With every day that goes by, we are reaching new highs in Andrew land.  His awareness is unbelievable. His eye contact, we couldn't ask for better.   He is communicating both verbally and nonverbally extremely effectively, and Is suddenly terribly motivated by a number of things, where before, he lacked almost any motivation.

Where before I made it occasionally thought, "what autism?", I now think that all the time. 

It's impressive.  It's ... Healing.  His body is healing, and his brain is able to work the way it should have been working all along. He is picking up where he left off at 15 months climbing all over the place like a monkey, babbling like crazy, singing happily, and lots of smiling.

I'm playing with his brother.  Melt my heart. I'm not sure who's happier about it me or Ben. 

He knows that a cow says moo, he knows " row row your boat " and the scream at the end. He has even Strung two words together.

So here we are, the road to recovery. And I am so glad that we found our path. So thankful that my boy is healing quickly.

I am working very hard to focus on every positive day, every positive interaction...

And yet, something inside me knows, that even once he is recovered, autism is going to be a major part of my life, forever.  

I know, that for whatever reason, we have been chosen to go forth and make sure that this happens to as few children, families in the future as possible.  Autism is treatable and preventable.

As true as Andrews healing is, so is that statement. Autism is treatable and preventable. This is my new truth.

The hours I spend with him in therapist, the hours I spend working tirelessly with him, the hours I spend researching, reading, highlighting.  It's going to count, and it's going to count for more than just Andrew. Not that he isn't enough. He is. Getting my son back is the only thing that matters anymore. But no one around me will have a child with autism and be able to say, "I wish I knew…" 

No Evidence of Any Link

I've had so many people contact me privately since I started blogging.   Everyone wants to know what I know about vaccines.   I certainly have learned way more over the last six months than I ever knew before.

Friends, here is documented proof, of vaccine - induced autism:

http://adventuresinautism.blogspot.com/2007/06/no-evidence-of-any-link.html

I am hoping this blogger doesn't mind my linking to her blog, which I find freaking amazing.  Her most recent blog post is sure worth reading.  It's like being in my brain.

I read her blog and I cry and I think: I wish I knew! I wish I knew!  I wish I knew a year ago what I know now, I would have made such different decisions.  So friends, read.   Read, research, and think.    I read the dates on her blog, and I kick myself for not educating myself before I had children.  Before I allowed one of them to become disabled - maybe for life.

I know I said I wouldn't talk about vaccines, after that first vaccine related post.   But how can I not?  My decision to vaccinate my children, to do the "responsible thing" and believe that nothing bad would *really* happen to us, changed each of us, forever. 

And of course, I am thankful for the friends I've met on this journey and the knowledge I've gained.  

But I would rather my son not be 1 of the 50. I would rather he not have had his brain and body damaged, probably forever to some extent. I would rather these precious moments of his babyhood and toddlerhood have been spent in happiness with me and his brother and our family, instead of hours on end with therapists, and worrying, and maybe in pain, suffering in silence. 

So sue me.

Read, educate yourselves.   Do what I didn't.  What I would give anything, ANYTHING to go back and do. 

I've been hesitant to write, as a mom in my closest social circle is experiencing real and true tragedy in her life right now: The stuff nightmares are made of.   The stuff that makes me so thankful for what I have, and feel too guilty to complain about my whole and complete walking and talking sons.  And yet, I have to write, so here we go:

Ben had his 6 month IFSP review done today, and he met every single speech and language goal we set for him. Hooray!   He needs an OT consult, and there's a lot of work to be done with our guy to get him to where he should be, but his development is exploding, and I am not worried about him.

Andrew's IFSP was re done yesterday, not because he's been on this plan for six months, but because the therapists are changing the hours on me  - which I am mostly OK with.  Taking some away, adding more.  I love his whole team right now, so I am very comfortable with the changes.  I just wish there was a way to have one of them here with me all day long!    Andrew had met several goals on his IFSP, ahead of schedule, and that was thrilling to see!

So, with the Generation rescue grant, Andrew is currently on:
- daily multivitamin
- daily probiotic
- 1 digestive enzyme per meal
- fish oil
- vira stop (as of tomorrow).
- Calms 4 Kids tablets at night

He has an epsom salt bath every night and castor oil rubbed on his stomach every night in a clockwise circular motion.

I have a chart on my fridge to ensure that I don't miss anything.

Since the beginning of the Grant, we've seen huge improvements, as I've mentioned before.
But this last week we are definitely seeing some huge sensory regressions: Toe walking, tons and tons of stimming.  

Trying to figure out the source, but it may just be another little phase.

Seeing the DAN doc was thrilling for me, particularly having read everything she recommended we read, and doing things we already do.   However, a new thing in our home since the DAN doc is we are now going organic!

Signed the form this week to release Andrew's records to the school district.   I did this without hesitation.   He will, no doubt, require extra help 11 months from now.  With Ben we have some time, though I will probably release all his stuff too. 

I don't even want to think about school for my babies!

Oh!  And the fence!  After an extremely contentious phone call with a board member the day before the HOA meeting, the meeting was still pretty darn climactic.  Debate over whether autism is a mental or physical disability, whether I'll start a daycare once I have a fence, whether our homeowner's insurance will cover renegade children sledding down the hill into our fence.    But, many neighbors came, and we got the approval!   It wasn't exactly unanimous, but it was uncontested when the vote went up.

Little victories.