Friday, March 21, 2014

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?

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.

Friday, February 21, 2014

Bowling can be Brutal

I cried the whole way home.

Was there a major meltdown? No.
Did anyone get hurt? No.
Did anyone get lost? No.
Was it a failure? No.

A friend bravely invited us to go bowling with him and his two girls. I knew the kids would have a lot of fun. Emerson had just visited the same bowling alley weeks before on a Special Olympics trip so I knew he would be super excited to go back. Plus I had been well aware for weeks now that we needed to hop out of our safe fish bowl that is our home and get out more.

The last 9 months have been hard. Really hard. Separation, divorce, and the realization that Emerson is not the only child in the family on the spectrum. Finnigin joins him with increasing uncanniness. With him it seemed to be more mild than his big brother but as time passes I keep seeing, it's not so much less severe. It is just a different brand. Different sensory issues. Different struggles, different strengths, but just as much hard work to help him blossom.

We piled in the car and were on our way. As we pulled into the parking lot, Emerson's face lit up with recognition. We went in, selected the correct sized shoes and made our way to lane 3 where our friends were waiting. The lanes with bumpers were full so it would be a lot of gutter balls. I was okay with that. My expectations were low and not at all ambitious. As long as they had a reasonably good time and we gave it a shot, I'd be happy, I told myself.

Okay any Autism parent knows when you go somewhere new or busy,(or pretty much leave the house) you turn your eagle eyes on and watch for the first sign of bolting or general trouble. You perk your ears up to sounds and get more aware of your environment so you can anticipate potential problem stimuli or sticky situations.
You are on high alert.

Scrambling from one kid to the next. "Be careful. Bowling balls are heavy...Don't get your fingers pinched...Finny the ball goes in the lane...Thats for bowling balls not your head... Let me help you... Don't touch the floor it's yucky...I know that ball is pretty but it belongs to someone else... Stay with the group... It's your turn... Where did Emmy go? *Panic* Come back and STAY with the group!"

"Mommy! I got 9 pins!!" Eight year old Meadow shouts.
I feel a wave a guilt that my attention is so spread thin that I don't have much left to give her a fair share. At the same time I feel myself break out in a sweat from the exertion of wrangling two very determined boys.
"WAY TO GO MEADOW!!" I shout as I throw 30lb Finnigin over my shoulder so he can't run away again.
I know that she is having a blast helping the younger girls and her brothers but I still wish it was easier on her I think for a second, until my attention is pulled straight back to the boys.

Sometimes life reminds us that we aren't as good as we think we are.

Emerson was diagnosed right after he turned 2 years old, almost 5 years ago. I've learned a lot in those five years. His brother Finnigin is just about the same age as Emmy was and we have known for a year that a diagnosis for him as well is coming. He is already up to 3 separate therapies a week.

It wasn't until bowling that it hit me, like a ton of bricks. 

I have to start over.

And not just start over, but start again. And it's still a question mark. For both of them.

In my face that I have Emerson who is doing so good but really is still very hands on, and Finnigin who is his own little enigma that needs my full attention to figure out. The walk down memory lane with one while trying to help the other stay on track. Its all about staying on track, keeping them contained, not falling behind, taking the road less traveled by most parents and trying to not stumble as we aim for a similar destination that we may never reach. Celebrating every step forward.
Realizing I'm doing it solo from now on.

So I cried.

And that's okay.