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Who’s Driving the Bus?:  Driver’s Ed -Speaking from the Heart Makes a Difference!
Jeanine Pinner, TxP2P

Do you doubt that speaking up really counts for anything?  Ever wonder if anyone is really listening to you?  Living in a world that is frequently scary, one that sometimes doesn’t make sense, times when you doubt that anyone is really listening, it can be difficult to convince your children that speaking from the heart can make a difference.
Last year, my son, Jake, and I attended the 2006 Texas State Conference on Autism in Dallas.  Jake chose each of the sessions he wanted to attend and loved every minute.  He was particularly inspired by the keynote address from Taylor Crowe, a 25-year-old man with Autism, and told me that if Taylor could do it, so could he! 
Some months later, I was invited to participate in the Stakeholder Committee Meeting for the 2007 State Autism Conference.  I knew my voice as “mom” and advocate mattered, but believed the voice of the self-advocate was the most important.  I asked Jake what he’d like for me to take to this committee on his behalf – what would he say to committee members if he were there?
Here’s what he gave me:

Jake’s Wish List
2007 Texas State Autism Conference Stakeholders’ Meeting
2-26-07

1. Self-advocacy skills
1. asking for help when you need it
2. explaining your disability
3. knowing your modifications and how to ask for them when you need them
2. Managing challenging teachers
1. Dealing with tough teachers (teachers that are not really experienced with Autism issues)
3. Understanding my disability
1. understanding which behaviors are happening
2. how it may affect your self-esteem
4. Organization
1. managing your time
2. keeping your school work (notebooks & binders) clean and organized
5. Social interaction
1. proper ways to communicate with friends or anyone you don’t know really well
6. Participation in ARD Committee meetings
1. being able to attend meetings
2. understanding what’s going on

It was a proud moment for me when I handed Jake’s Wish List to Dr. Patti Huskin from ESC Region 2, the education service center responsible for the Autism Conference.  Shortly after the meeting, Dr. Huskin emailed us to let us know that she would do her best to include a self-advocates’ track at the conference.
Jake haunted ESC Region 2’s website for weeks after receiving her email and, as evidence of a self-advocates’ track emerged, he became more and more excited about attending the conference.  I was (and still am) absolutely knocked out by how quickly Dr. Huskin and her Team were able to add an entire track for self-advocates to the conference.  Only a Team with profound passion and dedication could have pulled this off!
As the conference date approached, Jake’s anxiety level rose.  Was I sure I had registered him?  Would a hurricane cause the conference to be cancelled?  If it rained really hard, would they be able to hear the presentations going on inside the conference center?  What time would I pick him up from school to get on the road?  Would we check in at the hotel or the conference center first?  Should he pack right now?  Which suitcase should he use?  What if…???!!!  You get the idea, right?
Our day to leave finally came (whew!).  We arrived in Corpus Christi to gorgeous weather, set up the TxP2P Exhibit, and Jake proudly checked in at registration and picked up his conference materials.  I waited outside in the truck while he checked in completely on his own.  He wanted me to go with him to locate the rooms his sessions would be in (yes, he had already selected each of his sessions before he even arrived in Corpus), so I did.  I was proud of him for being the one to suggest it -- knowing what he needed and asking for it – yea!
Thursday – another beautiful day.  We were a little behind schedule, so instead of taking the shuttle, we drove over to the conference center and Jake made it into the center on his own while I found a parking place.  Hundreds of people were making their way to their own sessions while Jake was trying to locate his.  When I finally caught up with him, he had already determined that his session was in a different location than we originally thought and he hadn’t been able to find the correct room.
What to do???
Ask for help!  The wonderful folks at the Information Desk told us exactly how to find the room for Jake’s session.  He just bounced right into the room like he owned the place – so excited to be there!  Throughout the day, I caught reassuring glimpses of Jake here and there.  I knew it wouldn’t take him long to create a visual map of the center and had instructed him that he was not to leave the building without me under any circumstances.  Each time we had a few minutes together, I probed for information – “How’s it going?  Are you enjoying your session?  What are y’all doing?  What are you learning?”
He happily shared some of what he was learning and explained the difference between modifications and accommodations to me.  By day’s end he was tired, but still fired up, looking forward to his sessions on Friday and Saturday.
Friday!  Jake wants to ride the shuttle.  I’m carrying too much stuff back and forth from the hotel to ride the shuttle, but I know it’s important to him.  Now I’m a little nervous – how to let him take the shuttle while knowing he’s getting on the right one and only gets off at the conference center?  Hmmm........lurk around the corner in the truck and follow the shuttle to the center?  Yes!
He knew I was there, but ignored me.  The shuttle arrived and he boarded, along with other conference participants.  I followed only part of the way and made my way to the parking lot on the other side of the conference center, parked and went into the building.  By the time I saw Jake, he had already connected with our friend, Tracey, and had made plans to attend the keynote with her and her group.  He didn’t need me to tell him what to do or where to go, so back to the Exhibit Hall I went.  Jake was attending the conference independently of me – very happily and successfully – another goal accomplished! 
Saturday arrives – sunny and humid, seagulls calling out to passersby.  One more trek to the conference center with my cart and materials.  I’m by myself today – Jake has left the hotel without me, located the shuttle and arrived safely at the conference center, all on his own.  His self-esteem is soaring!  My anxiety is lessening – he’s OK and proving he’s more than capable.  Jake’s session today is Introducing Me Too, a session designed to help self-advocates create Powerpoint presentations that explain each person’s disability, needs, and strengths to others.  He loved it!
This entire experience reinforced my faith in Jake’s ability to make good decisions and confirmed for me that he really has been listening to our years of instruction.  Even though I’ve been teaching him many of the things that were covered in his sessions, he heard it differently, perhaps even better from someone else.  We never know how much time or how many opportunities we’ll have to teach our children what they need to know to be safe, independent and productive.  The window of opportunity could end tomorrow.  This reminds me that not only must I make good use of every opportunity that is provided, but that I must work to create new opportunities for him for as long as he needs them or as long as I’m able. 
Jake’s participation in the 2007 conference was a powerful experience for him (and for me).  Through the carefully organized and well-planned self-advocates’ sessions, his knowledge and confidence has grown.  He has his own dreams and goals for his future and every one of these learning opportunities helps him make progress toward them.  He tells me that now he knows he’s not alone, that there are other self-advocates out there who are experiencing some of the same difficulties and fears he is.  He sees some who are where he was (his words) several years ago, and some who are where he wants to be.  He feels valued, respected, and honored just being here at the conference.  He tells me (a lot!) that he is thrilled to have had some impact in making positive change in the world through Dr. Huskin’s use of his Wish List to help create an entire conference track for self-advocates with Autism. 
As Jake puts it, “It takes a lot of courage to say what you think.  Sometimes when you speak what’s in your heart to someone who cares and is really listening, things change.” 
Thank you, Jake!  And Thank YOU, Dr. Huskin!
I’d love to hear from you about what’s going on in your corner of Texas in this arena.  Does your favorite conference have a track for self-advocates?  What is provided at your school district/community/education service center for self-determination and self-advocacy instruction and activities?   Who is traveling on this journey with you and your child?  What can you and your child do to create more learning opportunities for self-advocates?  Please write to me at jeanine@txp2p.org to share your experiences and ideas.  We’ll publish your contributions in an upcoming newsletter.  I look forward to hearing from you soon!