April 6, 2009

TSHA Convention 2009

(Photo by Shannon Sakmary-Best)

So yes, it turns out that 2500 people is, well, a lot of people.

I got a sense of that fact when we went to the sound check the day before the Keynote Session of the 2009 Texas Speech Language Hearing Association Convention. We were looking for Ballroom D, but when we peeked in the door to Ballroom G, we saw that I would in fact be speaking in Ballroom All-Of-Them. The partitioning walls had been retracted and the entire room was open. Three giant screens loomed over the stage, two of which would display my slide presentation (mostly photos of Schuyler, because I'm no dummy) and one which would show my head all giant-sized as I spoke. When we showed up the next morning, the room was full and some people had even been turned away. It feels surreal even to say that, but there it is.

I'm happy to report that the speech went well, I believe. I got a great deal of positive feedback from people afterwards, and no one booed or threw any of their breakfast tacos at me. The book signing sessions immediately following were crowded and friendly, with Schuyler signing in pink and generally charming everyone. (Again, I'm no dummy; I understood who people were there to meet.) I spoke to a local public radio reporter without sounding too idiotic, and we even visited the state capitol building to meet the governor (who was a no-show, sadly; I wanted to see Schuyler give Rick Perry one of her tackle-hugs) and other representatives about some upcoming bills that are of great interest to speech language pathologists and their patients.

Everywhere we went for the next two days, people would come up to us and say that they cried or were inspired by the speech, and I can't even begin to tell you how much that means to me. It's a powerful thing for me to hear because the fact is that we're not that different from any other parents out there who have fought and will continue to fight for our disabled kids. If we're different at all, it's because 1) the book has given us a voice where so many parents have none, and 2) Schuyler's story has a very rare happy ending, or at least a happy beginning. As a result, the idea that I could represent other parents is a humbling one, and one that I take very seriously.

The Texas Speech Language Hearing Association is made up primarily of SLPs (speech language pathologists, if you're not into the whole brevity thing). They represent one leg of the crucial balance for kids with disabilities who attend public schools, with teachers and parents making up the other supports. It's a wobbly tripod under the best of circumstances. I acknowledged in my speech that the two biggest obstacles for SLPs as they attempt to implement therapies and technologies are teachers and parents.

Teachers are overwhelmed by their class loads and by the labyrinthine system put in place by school boards and state-mandated testing and No Child Left Behind, and can be resistant to new technologies and therapeutic approaches. Much of the time they're just getting used to the last Big New Thing that came at them. And parents often feel overmatched by the capital-E Experts they face when they go in for their kid's IEP meeting. Until they take up the fight, educate themselves and become empowered, special needs parents serve as a kind of wind drag on the process, which is unfortunate and even frustrating, because we should be leading the fight, not following hesitantly behind.

Part of why I wanted to deliver this speech was to make the case that when empowered, special needs parents become a powerful force for change and progress. "No one is a quicker study," I said, "than the special needs parent." Julie and I couldn't help Schuyler much; we weren't qualified or trained to do so in a meaningful way. But without our persistence and our self-education and our willingness to be a pain in the ass when it was necessary, Schuyler wouldn't have been helped. She wouldn't have had the opportunity to become who she is today, and who she's going to be tomorrow, or in ten years.

And that's not because we're such swell parents and should be lauded for our efforts. It's because that's our job. And if you're a parent of a special needs kid? It's your job, too. If your kid gets into the finest program in the country, or if they end up in some awful place where they get parked in the corner and are simply fed and watered like a plant until they turn seventeen, the fact remains that eventually, they won't be anyone's responsibility but your own.

And when the school can look up at your kid, shrug and say "Not my problem", you as a parent had better not be standing there thinking that it's time for you to get involved. Because by then, it'll be too late. You will have squandered your opportunity to save your child, and you will get to take over the feeding and watering and regretting the wasted years.

-----

To the SLPs represented at the TSHA conference, I said this:

What does the future hold for kids like Schuyler? I wish I knew. There are so many kids out there like Schuyler, so many stories, many of them sad and most of them overwhelming, and yet the one thing that I truly believe these kids have in common is that none of their future stories is written. I watched Schuyler defy the expectations of her earliest teachers and doctors, and I've learned to trust in our ability to be a pain in the ass on her behalf. Her support in Plano has been so solid and so consistent that there are times when I forget, for just a moment, how many times she could have been left behind, in general special education classes where she wasn't taught so much as cared for. I forget the devil of low expectations so often assigned to her, and how hard we had to fight to throw those expectations off. If Schuyler has flown as high as she has despite the limitations that were consistently placed on her, can you imagine how far she and all her fellow students might go if, from the very beginning, they could be given an environment that focused not on what they can't do, but on what might be possible? Can you imagine that world where parent/teacher meetings didn't consist of "Here's why we can't try that" but instead simply "Why not?"

As parents of broken kids yearning for repair or compensatory development, we go into battle against our children's monsters clutching whatever weapons we can find. Rubber swords if necessary, nothing but our hands if need be. If we seem desperate at times, it's because we are, we are absolutely desperate, and you'll find that most of us will do whatever it takes to defeat those monsters, or to muzzle them, tame them, to put them on leashes and just manage them. We just don't want to do it alone. We need you. As educators and SLPs, voters and taxpayers, as fellow citizens of the world and children of God, you can be our heroes. We're desperate for heroes most of all. All of you can be the ones who step up beside us and say "Here's a real sword, let's take care of this."


-----

It was an honor and a privilege to speak to so many people, particularly ones who work so hard to help Schuyler and her friends. I would also humbly suggest that it is THEIR honor and privilege, as it is mine, to work with kids like Schuyler. The work is hard. The rewards are immeasurable, and go all the way down to the soul.




Before the speech

The line at the book signing

Signing books with Schuyler and her pink pen

Schuyler signing the governor's guest registry

Schuyler with PRC's Tracy Custer

(Photo by Shannon Sakmary-Best)

21 comments:

edbteach said...

Bravo!! Thank you so much for sharing part of your speech.

Did anyone record it? I was wondering if it would be available to view on-line anywhere.

I love the line about teachers and parents are the biggest problems SLPs face. You hit the nail on the head when you said teachers are still trying to adjust to the last big thing and are often overwhelmed when asked to do something else that is new.

Your insight reminds us (classroom teachers) why we do the job that we do. I am sad to say that in this day and age in Texas with all of the high stakes testing that we do, teachers often need that reminder of why they went into teaching in the first place - to make a difference in the life of a child. Your blog and book have helped me remember that!

Orfhlaith said...

Awesome post....

A special needs parent who is well known by everyone in the school district. I advocate for my son and other Deaf and Hard of Hearing children too. And it has paid off in spades!

Anonymous said...

Thank you for using your voice to represent all of us fighting our children's monsters.

The excerpt from your speech was wonderful and brought tears to my eyes. The relief I feel when someone offers to fight with us and for us washed over me when I read it.

Bravo to you!

R.

Pia said...

Love love love it! If ok with you, I wanna post a link from my blog to this post.... you hit the nail on the head and articulated it perfectly!

Pia

Anonymous said...

That last photo reminds me of the Obama girls stealing the show when they came out on the DNC stage. :D That is one awesome kid!

Leightongirl said...

Wow, just wow.

Charlotte said...

Yeah, that last picture ... Schuyler's such a fabulous, inspiring girl in her pink polka dots.

They look like pink cannon balls with which she keeps hitting her monster over the head each day ...

MacFadyen Clan said...

thank you so much for speaking at the TSHA convention! i know it was a highlight for SLPs who were able to attend.

Personally, thank you for joining us on the Capitol Visit. Schuyler's story speaks more to legislators (and more importantly their aides) than 3000 SLPs, to improve therapy services and their availability.

thank you!
*Heather MacFadyen
capitol visit task force chair

Jennifer said...

Kind of off-topic, but I saw this and it seemed kind of related:

http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness

If this kid can run a business, who can't?

Rob Rummel-Hudson said...

Oh wow, that awesome. Thanks for posting that!

Elizabeth / USA said...

That was an incredible post, Rob -- amazing presentation -- hope we get to see it online at some point, but you captured the atmosphere and how YOU felt beautifully...

That link doesn't work as is -- 404 error... Is there a way to search for whatever it was about?

Elizabeth said...

This is just fantastic. I'd love to share it with some of my colleagues at the Institute for Childrens' Healthcare Quality (I'm a Parent Co-chair, charged with the responsiblity of ensuring that parents are equal partners at our improvement collaboratives). That was a whole bunch of jargon and I can't believe I even wrote it down. Thank you for the thoughts you expressed, the reminders that I need to hear (my own daughter is now 14 and trust me, I need to be reminded of this hopeful stuff). Thank you.

Jordan Sadler, SLP said...

What a wonderful post. I'm an SLP in Chicago and I asked for your book for my birthday; I received it just yesterday and I'm already nearly finished. It's beautiful. I've been hearing about your writing, your advocacy for Schuyler, and this blog for ages from leightongirl and niksmom and have finally found my way here. I looked for you and Schuyler at the ASHA convention but missed you.

I'm so looking forward to reading more! Thanks for all that you do.

Julia O'C said...

Amazing post. Wish I'd been there.

eliza said...

I am very proud of you.

Loves Pickles said...

I stopped at "breakfast tacos" and had to post simply to say, "mmmmm, breakfast tacos....."

Nightfall said...

Rob, did you ever think you'd be able to advocate for the Shepherds of the Broken on such a scale, when you started thinking about writing a book?

Tammy said...

Rob, I would like to applaud your opinion that parents of special needs children have a responsibility to advocate for their children and get them the services that they need. You and Julie have done a marvelous job with Schuyler.

I grew up hearing impaired and was in public elementary school during the mid 1970s. These were the early days of schools even considering the idea of mainstreaming kids with various disabilities rather than corralling them into one school and providing glorified babysitting.

My mother took a lot of criticism for her decision to remove me from the Easter Seal program because they insisted that I learn to sign instead of learning to speak. She was persistent in her efforts to find speech therapy for me and after ten continuous years of therapy, I "graduated" at the age of 12. More importantly, she taught me that I have a right to ask for whatever aid I might require in order to live to my fullest potential. She did this while not allowing me to feel sorry for myself or accept any judgment imposed by others. A few years ago, I was poking through some drawers in her house and found a notebook in which she had kept notes about my situation along with a letter that she had written to the school district. I was stunned at how many avenues she explored and how much work she had put into moving me from a school 45 minutes away to my neighborhood school while obtaining the services that I needed and was entitled to.

I am so grateful every day that she saw what I was capable of achieving in the face of doctors telling her that I was just "slow" and that I would never be able to learn to speak "normally". Had she believed them, I would be living a very different life now.

Margaret DeAngelis said...

"It was an honor and a privilege to speak to so many people, particularly ones who work so hard to help Schuyler and her friends. I would also humbly suggest that it is THEIR honor and privilege, as it is mine, to work with kids like Schuyler. The work is hard. The rewards are immeasurable, and go all the way down to the soul."

A guidance counselor at the school where I taught often reminded us that "the parents of this district send us the very best that they have."

Every single teacher on the face of the earth, no matter what kind of student they are entrusted with, should be required to sign a statement every single day, like a software licensing agreement, acknowledging that they are being given the profound privilege of influencing somone else's child.

bethany.summer@gmail.com said...

Thank you for speaking for so many who have been denied a voice. As a special education teacher, I have shared your frustration with the limits of the education system. In my experience most of the parents of my students have been incredible and pursuing the best possible for their children. The therapists that I worked with definitely needed training in AAC systems and practices from the recent decade, but I could teach "that old dog a new trick" with enough persuasion. My greatest issue was with the system itself. I have been told that AAC systems are not made available by the school district for preschoolers because they are too young to comprehend anything beyond a 6 choice device (because every child loves being limited to a 6 phrase vocabulary), that we may tell parents we have an AAC team but it is really just the OT and PT who may or may not have ever seen an AAC device before, that switch adapting computers is a waste of money because children with severe disabilities could never learn to use them (I received a private grant and proved them wrong), and that my children are not entitled to the same high tech materials and funding for classroom technology because of the supposed level of their cognitive deficit. If a child has no method of communicating with the world, how do we know what they are capable of learning and understanding? I could recite my argument against using IQ testing for diagnosis, classification, and justification of services (especially with children who are non-verbal, non-mobile, and/or visually impaired) in my sleep. I had to laugh at an IEP meeting when the parents questioned the school psychologist on exactly how she had expected their son, who has a visual impairment and non-ambulatory, including hand usage, as well as being non verbal, was expected to complete the IQ testing tasks like picking up a toy duck and placing it on a plastic spoon to send it flying or looking at one of several named objects on a page. He has subsequently demonstrated rapid skill acquisition with a dynavox system with proper modifications (zoom feature of images, audio cues, and a switch activation). The school did not provide the system, his parents received it through private insurance; his classroom has nothing more sophisticated than three choice devices. Children with special needs provide schools with more money than children in general education, but the teachers of these children have to beg, plead, and fight for even equal money for supplies in so many instances. My belief is that children meet your expectations, and I expect that anything is possible. Thank you, and Schuyler, for showing the world that labels are meaningless and we need to start educating children instead.

Anonymous said...

A standing O for you and for the post from Bethany Summer!