I'm a new Autism parent....again

Something I have always been aware of as a parent is that all children are different and comparing them developmentally is a ticket into worry-wart-land....Then Autism knocked on our door and that sentiment became a mantra. An anthem against unnecessary heartache and an exercise in acceptance, practicing the art of celebrating every single tiny step forward. It slows you down and forces you to smell the roses, to appreciate even the briefest of moments of your child's hauntingly beautiful unique eyes meeting yours. Savoring every word, every spark of communication, be that verbal or non-verbal. We're not picky. We're starved for those moments of precious interaction, no mater how fleeting.

So it's also really hard to not developmentally compare Autism to Autism. When you have a six year old Autistic child that has been receiving treatment since he was one, and you look over at his one year old brother and see an echo of the past, comparing turns into a compulsion. I thought I had gotten past the agonizing question marks. I though as a seasoned Autism parent, it would be easier if I had to go down that path again.

A path I was prepared to travel as a condition of having another child.

Well it's not easier.

I doubt myself all the time. Again repeating scenes I've already lived. "Maybe his hearing is impaired..." "Maybe he is just picking up on what his big brother does..." "Maybe I'm so wrapped up in Autism, I'm projecting the things I'm seeing..." "Maybe it's all in my head..."

No. When you see your baby doing things his brother used to do when he was the same age, but no longer does, it stops being a repeat and starts being another journey. Down that foggy uncertain path that you are familiar with but can never truly be adept at walking because its always changing. And the fog is so thick it makes it hard to see more than a step or two ahead of you. No matter how long you walk it, it always feels like you're a little lost.

So with 5 years of Autism parenting under my belt I have to stop, take a breath and realize...I'm a NEW Autism parent...again. I'm going in with skills and experience that will certainly help but that doesn't change the fact that this is Finnigin's journey, not Emerson's. The comparing developmental milestones thing is a habit I have to break and may be harder than anything I've ever tried to give up in my life.

 But fresh eyes is what he needs. The me I was when I was terrified for is brother, was a more diligent Autism mom, than the one I am today. Don't get me wrong I work so hard with Finnigin just as I did with Emerson, and still do, but there was a desperation that first go around, fueled by love but also fear. Is he missing out? Is he getting less of me, like having me as his Autism parent isn't new but a handme down version of what he should get?

....*sigh*

I could let questions like this eat me up for an eternity... Or I can decide to draw a line of distinction between my two sons. They have different strengths and different weaknesses. And my parenting of them will be different, just as it is for their big sister. It already is so different with Finnigin, but I will go ahead and admit to y'all the unexpected benefit of going through this again: Baby Autism really is a joy! I never EVER would have believed I would miss that crazy baby Autism babble. It just makes me remember how joyous it sounds...Or when I find cars lined in a rainbow row...or when I see him study something for ages and finally figure it out...or the unhindered innocence of the non-verbal child.

All of those things are cherished memories. I just had to have them repeated to realize it.

Repetition serves them well. Turns out it's beneficial for me too.

Why I do what I do

I remember back a million years ago, to the end of 2008 or so. My son was about 16 months and it was becoming obvious...he was different. He was so laid back and not at all demanding so it was easy to brush off my fears and say "He's fine. Boys are just less clingy right?"
Wrong.
These were the early days. My mother was pushing me to find out what was up with him. He wouldn't really respond to his name and wasn't talking at all among other weird things. His babble was this crazy alien babble and bar codes were like the coolest thing on the planet. Something was going on, but what?

"I just need something I can google!!"
My mother would chime over and over again.
Finally she usurped my authority and emailed Easter Seals. I'd like to say I was a graceful, proactive mom who called ECI myself about my 18 month old and my concerns, but no. My Mama did. He started services immediately, January of 2009 at 19 months for speech delays. He soon qualified for occupational therapy and the A word started floating around. Again it was my mom who kept going back to it, while I tried to ignore it, like a buzzing gnat. I have to say my mom kept me sane in those days. I started getting google happy myself. It seemed like the only outlet to the HEAVY question mark that floated around my sweet baby boy's head. What was going on with him??

In those early days I tried so hard to find people going through the same thing. Having the same fears. I know lables Get a bad rap but It's almost like a kind of purgatory not having one. Not knowing why your baby isn't like all the others. Feeling that crushing question mark permeating every aspect of your family's future, because let's face it, your mind will go to the worst possible place when given free reign.

I would write here and there when I found that the pressure was going to make me burst or pop some other much needed valve. We ended up lucky and only had about a 6-8 month wait to get in to see the developmental pediatrician. My sweet 27 month old BABY was given an official diagnosis of High Functioning Autism and Sensory Processing Disorder. I can remember after they told me, looking at me I guess waiting for me to break down. All I could feel was this inappropriate laughter bubbling out. That question mark was gone!! Albeit replaced by a puzzle piece but that at least meant a direction to move in, a group of people to seek out... Something to freakin GOOGLE!

After that, over the years I kept thinking about that awful time, before the diagnosis. That was the loneliest, most frightening time of my life. After that I would randomly meet a new parent, see the effects of the heavy question marks that had so recently been all over my face and end up pouring my heart out to them, knowing exactly where they were and just how hard not knowing was. I would describe our experiences and see how just hearing that truly helped. It made me want to help more.

It wasn't until 2011 that Mommy Buddy from the planet Autism was born. I would call Emerson buddy so much that one day he looked at me and said "Mama... Buddy?" He always seemed like an alien being, to be figured out, but bound to me, like I was supposed to be his liaison to the world and help him understand it. And vise versa.

So I finally had a place to compile all of my word doodles and observations in one spot, rather than lose sheets of paper that ended up as the back of scribble MASTERPIECES.

Over the last year and a half I have connected more than I ever thought possible. I had no idea Mommy Buddy would become my life line. I have met SO many wonderful people and formed REAL bonds. Whenever I see a brand new page start I feel overwhelmingly motivated to help them. Give them the opportunity others gave me, because I can see that they too are addicted to that feeling of need. NEED to help the parents still in that purgatory, still living shrouded in the worst fears for their child. And the ultimate feeling of community and FAMILY that comes from being a member of the "I love an Autist" club. Like any family we have our issues, we fight over things we all feel passionate about, but we support each other like nothing else. I'd say that is the very most unsung benefit after diagnosis. Our community makes me feel like I have an army behind me where ever I go and together we can truly change the world for the better.