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.

Brothers

From the day after they were born, when they were together, Andrew snuggled right into Ben.  He got such peace from being near his brother.  He was such a miserable baby.  The funny thing, though, is that as soon as Ben had any sort of a say, he'd push Andrew away.    Ben really "appreciated his space", so to speak.   Didn't want too much cuddling or loving or snuggling.  And he'd push Andrew away.

That lasted until ...  well...  I guess when Ben became mobile, he had a lot more interest in his brother.  Andrew started crawling at 8 months and Ben not til 12 months.  So around their first birthday, Ben really started to love his brother. 

This love, it manifests in "Dives" onto brother, and brother sandwiches, tackling, tickling, trying to spoon feed brother, trying to wake him up.   Ben doesn't even want to leave his room in the morning unless Andrew's coming, too.

Andrew's love of cuddling Ben was dissolving around then, as then, as Andrew became more isolated as his autism took over, he really didn't even seem to notice that Ben existed.  

Only in the last couple of months does he glance over at Ben's tray, what Ben's eating.
And then the last couple of weeks, glances over at Ben, if he's being loud, or to see what Ben's eating.
And then this week: Smiling.  At Ben, when Ben sings or smiles or runs, or who knows what.  He sees Ben and he smiles, for who knows what reason, except that they're brothers.

Sooooo....

It's been a while since I wrote.  I've written.  Whatever.  I need to be better about it, but am having a hard time carving out the time these days.

Andrew's services are about to increase - big time.

We received a Generation Rescue grant and are a month into that. Will be seeing a DAN doc soon.  Very anxious to get details about that and also anxious to actually go!

We petitioned our association for a fence for our wandering boy - and so far have lost.  But we have a few tricks up our sleeve.  That is to be continued.

Mostly, we've really been revelling in how well Andrew has been doing. There's a lot of appropriate playing going on, not as overwhelmed by crowds. He's looking a lot more when you call him.  (Or, when *I* call him), he's becoming more manageable outdoors.   He's happy, making so much eye contact.

I went to bed last night, after a wonderful weekend with him, including a very successful birthday party (and the first "holiday" in ages) that he participated in and seemed to really enjoy!  Most holidays lately I've cried, there's such a gap between where he is and where I want him to be.   But not this weekend.  It was beautiful.   I went to bed thinking, he's almost better, he's almost better...

And then there was therapy this morning. We had yet another assessment,   this one to build him a new ABA program, and she assessed him beginning at 0-12 months and he failed most of the questions.   Sigh.

Reality.

I asked that this time I don't need to be told his "developmental age".   It does me no good.

Tomorrow is their 2 year appointment.   Michael is coming with me and I am very thankful for that.   We will be refusing vaccinations.  I know now beyond the shadow of a doubt that Andrew's "roseola" was a severe reaction to his DTaP.   And that when I, 3 months later, allowed him to have his MMR, I sealed his fate.   The boys will not be vaccinated, not until I come to a place where I feel like I can do so without any negative ramifications.

I don't spend a lot of time being angry anymore. Not at the doctor, not at medical science, not at anyone.  Hopefully that part of the grief process is over for me.   I've become much better at living moment by moment with my boy, demanding as much from him as I can, and enjoying his successes.