Ok so maybe her name isn't really my ponytail but that is what Sammy called her after the first time he met her. This woman is so awesome and I can't even tell you how much we love her. She came for dinner and had the chance to see Sammy just being the whirling dervish that he is. She didn't bat an eye, in fact she pointed out all the amazing things Sammy was doing. She has helped us come up with behavior protocols and changes for him. Without her we would probably still be crying in our soup trying to figure out how to work with Sammy at home and this year when things got ugly, she was there to help and support me.
Every once in a while you meet someone that you know loves you and will be there for you no matter what. Well now, not only is she that person for me but also my boy. I can't begin to explain how loved I feel just knowing she is an Angel in our corner.
She wrote this for us...
On Saturday April 28th, my friends and I ran (read: walked :) ) in the 3rd annual Las Vegas Race for Hope; a 5K race that benefits families with Autism and raises awareness and education. This race is sponsored every year by the Grant A Gift Autism foundation and has grown in numbers each year. This was my first year participating in the event and I even made my own team! (this sounds easy, but let me tell you, managing adults is much harder than managing kids!) We walked in honor of Sam. Beautiful, wonderful, amazing Sammy who has changed my life in so many ways. The money from this event goes to benefit families in Nevada so it may seem odd that our team was named "For Sammy" who lives in Massachusetts. For me, it didn't matter that the money raised at this event wouldn't make it to Sammy. For me it wasn't really about the money (although it's a really great thing for families who need help). For me it was about spreading awareness and education. For me it was about making people understand. For me it was about putting a face to that 1 in 88. You see, Sammy was the first person I ever knew who had autism that wasn't a student or client. Sammy was the first person I loved who had autism. Sammy was the first person who made me see it all differently. Anne and I have known each other for many years and we have always been close. So when I found out about Sam's autism, I made it a point to do everything I could to help, everything I could to make this journey a little easier for Anne and her family.
Sam is the face I see when people say "1 in 88". This family is the family I think about when I walk, run or volunteer at events...regardless of where they are. Sam is the voice I hear saying "my love you my ponytail" (his affectionate nickname for me) when people say "I can't imagine living with this every day". So, even though I work with kids every day who are affected by autism, Sammy is my 1 in 88. And I wanted people to know him. So on that Saturday we walked. Me, my husband and my friends who had never met Sammy. They all sacrificed their time. They all walked, ran and jogged. It was hot. People had allergies. People had bad knees. People had little ones and no baby sitters. People were tired (ok ok, its Vegas, they were hung over).
But they all walked. Not one of them took a short cut. Not one of them decided to do the "fun mile" instead of the 5k. Not one of them complained. They all finished. With a smile. One of my friends said to someone who tried to convince her to take a shortcut "this kid we're walking for can't quit his autism so why should I quit this race because my knee hurts?" I cried. I cried because she doesn't know Sam or his struggles or what he goes through every day just to get dressed. I cried because even though Sam wasn't there to see it, he had a group of amazing people walking to support him, running to educate people, limping to let them know that he has a team behind him every day! Even though he can't see them...they are there. And now they have a 1 in 88 too. I'd walk a thousand miles for Sammy. I love him. He's my 1 in a million :)
He's my 1 in 88. Who's yours?