Jakobs Journal

March 2, 2010…the kickoff speech


We had our Kickoff Luncheon for Walk Now for Autism Speaks Cincinnati over the weekend. Great friends and great food for a great cause at Great Wolf Lodge. Really looking forward to the walk on May 22 at Coney Island. Below is a re-cap of last year’s walk and the speech I gave at the luncheon…

I do my share of public speaking about my son, Jakob and Autism…and I can pretty much hold it together…but I get to the walk or here with you and I struggle to maintain my composure. And it’s kinda embarrassing really, since I’m supposed to be a professional…been doing this radio thing for 22 years. So I really wanted to figure out what it is about you people and these events that affects me so much…and here’s what I came up with…

You get me. Some of you, complete strangers to me, get me more than people I’ve known for years, people I’ve known my whole life, some people I’m related to.

You get where I’ve been…the grief of the diagnosis, the fear of the prognosis…incurable, lifelong (which is a lie, by the way…our kids do get better and they can recover).

You get what it feels like to be lost and unsure what to try next…which therapy, which supplement, which drug, which school, which program, which approach to try to stop the screaming.

You get how alone it can feel when no one at work or in your family has a clue what goes on in your home, has no idea how to help you or why you have to get off the phone because your child is on the verge of a full-blown tantrum.

You get how frustrating it is when your child obviously doesn’t feel well but can’t tell you what’s wrong because he’s non-verbal.

You get why it’s very hard to have any semblance of a social life.

You get what it’s like for me to be a parent.

And you also get what it feels like when your child who never wanted to be held sits on your lap for the first time and gives you a hug.

Or when your child who never even noticed that you were in the same room looks you in the eye, smiles and says “I love you, Mom”.

You also get why it’s such a big deal when your kid for the first time…

Points to something
Says a new word
Uses the toilet
Answers to her name
Sleeps thru the night
Has a normal bowel movement
Plays a game with you
Lets you touch his dinosaurs
Sings a song
Follows a direction
Eats a vegetable
Makes a friend
Shows compassion

I just really love being around people who get it. Surrounded by you, I feel understood…and isn’t that what we all want? To feel understood and accepted? Isn’t that what we want so badly for our children?

The reason I get so emotional with you is…I imagine and hope that one day our children will be understood, accepted and embraced by our friends, family, neighbors, communities…and even at Target…the way they are understood, accepted and embraced by you.

(And for the record…I only teared up a little…no sobbing this year so I’m definitely getting better at this :roll:)