Thursday, September 27, 2012

Joint Attention

Boy Wonder, age 2 years 1 month, presents with a complete lack of joint attention.
Boy Wonder's Initial Evaluation 
November 9, 2007

One of the best things about parenting small children, ya know other then the whining and your pants being a walking tissue, is seeing the wonder and laughter in their faces when they experience things for the first time and their little faces looking back at you to see if you are seeing and experiencing what they are experiencing.  That type of connection with your child is what every parent expects but when you have a child with autism those moments are hard to come by. They are focused inward. You fight your way into their world and try to bring them out to your world. You wait for that connection and in our case we waited years. 

While not a daily occurrence, joint attention does happen more and more with Boy Wonder. We took all of them to the Bronx Zoo on Saturday.  They had a Dora and Diego 4-D short film exhibit about a robot butterfly. We were hesitant to take Boy Wonder in. Would he keep the glasses on? Would he vocal stim loudly to the point of annoying other people? Would he just flip out and need to be taken out quickly? We looked inside the theater. It wasn't even a quarter of the way filled. We decided to sit in the front row with Boy Wonder and Big Daddy positioned near the exit. Boy Wonder decided he'd sit on his Daddy's lap.  As the lights went down we put the 4-D glasses on him and Dora and Diego sprang out at him and he laughed, his big delicious belly laugh. He watched the butterflies come dancing onto the screen and reached out to touch them and then he looked over at me to see if I was watching and laughing too and when he saw I was laughing,  he laughed harder. That connection is all that more meaningful because it's been an uphill battle and we are rewarded with the sweetest victory.


Friday, September 21, 2012

Boston The Good The Bad The Ugly

It was a gorgeous morning to run. Bright, clear and cool which is just the way I like it but I hadn't slept well the night before because as usual the mind stays on all the damn time. I was thinking about Boy Wonder who has made some great progress lately but who has some old aggressive behaviors crop up. I was thinking about my friend who wasn't there. And always thinking about how did I get here from 19 months ago without having ever really run.


 I was really grateful for my friends, Jess and Luau and their beautiful girls who let me stay with them and are just fabulous friends. Again the whole autism sucks thing but wow I have made some amazing friends because of autism. (click their names and read their race recaps) I could tell you that their Katie gives me a glimpse into what it's like to have a tween cause shopping was hilarious (go to Sephora with her cause it was fun) and she is a smart charming beautiful compassionate young lady and hell if my girls are half of what she is I will consider it a job well done.  Or that Brooke has quite the sense of humor and wow she can draw or that when she calls me Jersey in that sweet little voice of hers my heart melts. I could tell you that I finally met Paula and what an awesome person she is and that I'm so touched that she ran one of her miles in honor of my son.

But the morning of the race, we load up and head in. It was a quick ride. I'm shaking off the lack of sleep, fooling around being me, remind myself that this is my 3rd half marathon this year. (NYC Half and the Asbury Half, thank you very much) and that I am capable of this and want to beat my Asbury time. I think of my boy who they said would never speak and never connect and remind myself that he can talk and oh boy does he connect. I think of my girls who always ask when I get back from a race,"Did you win Mommy? Can I wear your medal?" and how they are surprising me already with just how much they get their big brother.

We find Sassy and Doug and make our way to the start line. Doug and I trash talk cause hey it's what we do. (I'm way better at it though ssshhhh) Sassy is all cute and sassy in her running skirt. We hug Jess and promise to look for her on the course and  we are off. We are moving along the four of us. Me cursing, Sassy looking cute, Doug and Luau chatting like tween girls. (Sorry boys lol)  At some point Doug tears his calf muscle and pulls over but he makes a comeback.  And somewhere around mile 8 or 9 I can't keep up the 9 minute per mile pace. The sight of all the Team UP shirts is starting to get to me. It's an overwhelming sight and yet it's only a very small piece of the enormous pie.  Sassy takes off and Luau stays with me cause he's good like that.   And Doug comes tearing past us and I know I'm losing my bet to him.

We get to the last half mile or so and Luau says, "After this hill, you've got it. We're almost there." I may have screamed at this point,"What the fuck you said the course was flat?????!!!" really really loudly.

And I finish in 2:04:44 beating my Asbury Half time by a whole 3 seconds.



Suffolk Downs after the race


Monday, September 17, 2012

Friday, September 14, 2012

Three Words

Those three words they told you that you would most likely never hear from your profoundly autistic non verbal child. They were wrong. He's come a very long way in 5 years. He's no longer locked away. He comes out further each day. He laughs. He plays in his own way. He's engaging. He's affectionate. His smile and giggle light up the world. And those three words you thought you would never ever hear from him, you hear them.

video

Tuesday, September 11, 2012

Tomorrow

Tomorrow is a promise to no one
~Clint Eastwood



We’d been up at the top of the towers the weekend before it happened. The next week the NYC skyline, we had all grown up with was changed irrevocably. Lives were changed. Lives were lost. Families, friends and loved ones gone in an instant of carefully planned insanity. Their tomorrows were gone.  Potential unfulfilled, dreams lost and the last chance for an apology or an I love you gone.

Choose to live the life you want. Choose to love freely, openly and passionately. Pursue your dreams. Find the humor in every situation. Don’t be afraid of change because life will bring you change whether you want it or not. Learn, grow, try new things. Get out there and live the life that was taken from so many on this day.  What are you waiting for? 


 

 

Monday, September 10, 2012

And Then There Were None





And they were off to school. My house is empty and quiet for the first time in years. I love them all madly but the peace and quiet were hard earned and are needed. Now if you'll excuse me, I'm going to go jump on the couch and then do my own schoolwork.