Speaking for Herself
“There is no greater agony than bearing an untold story inside you.” — Maya Angelou
In ways both large and small, Schuyler is learning to advocate for her own self-interests.
A few weeks ago, she attended her first IEP meeting. It’s true that we’ve fallen out of love with Schuyler’s school district, and they’ve been particularly bad this year where her AAC usage has been concerned. I must admit, however, that the thing that I actually like about her school program is that beginning in 7th grade, unless there is a compelling reason against it (and I can imagine that for a lot of kids, there are some very good reasons), students are required to attend their own IEP meetings. Schuyler is in 6th grade; this was her practice run.
I wasn’t sure what to expect, but the meeting went well, at least her part of it. And it went well because Schuyler took ownership over a particular part of her future. Schuyler informed the committee that beginning next year, she wants to use an iPad instead of the dedicated speech device that she’s been using for the last seven years. The team member informed us that the school district wasn’t supporting iPads as AAC devices in the classrooms. We informed them that we didn’t really care. Schuyler made her choice, and we were supporting her, and that was pretty much that.
Furthermore, Schuyler announced that she had chosen to use the relatively new (and vaguely controversial) speech app Speak for Yourself as her mode of communication. She told the committee that she could use her iPad for class in different ways, not just as a speech device, and she pointed out that with the iPad, she looked just like everyone else.
Schuyler made a choice, and it was at least in part a choice based on her desire to “pass” as neurotypical as much as she can. I confess, one of the reasons for her choice, to look like everyone else, made me a little sad. “Passing” feels like a denial of who she really is, and it also feels like an endeavor which may ultimately be doomed to failure. But at Schuyler’s age, and given that her disability is largely invisible, it was a perfectly understandable choice. I am immensely proud of her, not just for making the decision but for expressing her reasons for doing so in an extremely articulate manner. She knows how she wants to communicate. She understands.
This is Schuyler now. She has fallen in love with communication, even as she struggles to find her own way to be heard. She’s writing short stories and reaching out to friends via email and text messaging. She is advocating for herself, and not with anger or a sense of separation from the grand rough world around her, one that she would be perfectly justified in distancing herself from. I watch Schuyler make her way in the world with positivity and courage, and it settles my oft-fretting fatherly heart. There’s a lot I don’t get right in this life, but I feel sometimes like I’ve gotten it right with Schuyler. I sometimes manage to feel like she’s going to be able to make it through the world, communicating on her terms and with real happiness.
Schuyler recently rediscovered her long lost digital camera, and she’s been taking a lot of photos of the world around her. It’s fascinating to watch that world through her lens. It reminds me that for Schuyler, communication is about the words, yes. But it is also about the touch, and the laughter, and the anger, and about what she captures wordlessly with her camera and her art.
Schuyler still has her secrets, and she still has more than most people. But she’s making her own choices about what to keep secret, and from whom, and most of all what to offer to the world around her, if we only have the sense to hear.
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About The Author
Rob
Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.
I look forward to Monday’s only because I know I will be able to come here and learn more about Schuyler and her amazing family. Thank you for your writing here.
Thank you so much!
No question… you’ve definitely “gotten it right with Schuyler.” Never doubt that.
I love absolutely everything about this. Never doubt that you have absolutely gotten it right with Schuyler. It is abundantly clear to the rest of us. 🙂
Great blog today! My daughter’s iPad is going to school next year but not for communication. To help her be organized and continue to master technology because that is how she will thrive in the real world! Thanks for sharing!
Hi, I’m Susan G’s sister, I work at TN School for the Blind in TN I love it when students advocate for themselves. Good for you!! I have a colleague who’s from Texas Said all of her students had technology (expensive)when she taught in Texas, so I know Texas has the funds. We have IPads in every classroom for student use and we are a poorly state funded program. Just wanted to give you words of encouragement Keep up the good fight, Schuyler!
I think it’s important to remember that as teenagerhood is the Age of Passing for everyone, and not just broken kids (or special needs, or whatever adjective you prefer). Wanting to blend in doesn’t make her uncomfortable with her disability; it makes her a teenager. But she’s still that fierce kid that howled at the bigger girl in the mall playground. She’ll be okay.
I would love to see any photos that Schuyler would like to share!
She’s growing up so fast! I’m glad to hear she can assert herself in a polite but firm way.
Schuyler has created her own voice. I would also love to see any photos that she would like to share.
I think it is amazing that she was able to be so expressive with her decisions! You and your wife have obviously done a great job in teaching her how to advocate for herself.
Thank you so much for sharing your experiences. My 6 year old daughter has a lot of similarities to Schuyler, and I am so grateful to you guys for being willing to put yourselves out there and share your family’s journey. Some days, I feel so discouraged and alone in our struggles and it really does make a difference to be able to read about a kid who is making it despite her differences. It gives me hope for my daughter, so thank you for that!
I work with adults who have intellectual/developmental disabilities…I have learned *so* much from your writing about Schuyler, and I hope I’ve been able to take some of it with me. Thank you.
I am a school based speech pathologist who has followed you and Schuyler for years. I am thankful for all of your insights and have become a better therapist and advocate for my students because of your posts. In Hawaii, we are beginning to use the ipads as AAC devices and they are wonderful for many of our students. In addition, there are many learning apps that can be used in school. Texas needs to join the 21st century!
We are a few years behind you, with a different set of issues…but at the base of it all, we have a very present little boy (almost 7 years old) that can’t speak for himself. Hearing about the battles and progress is good medicine for all of us. Thank you!
Hi Robert! I’ve been following your blog and posts for a few months now, but have yet to feel like I can adequately put into words my appreciation for all that you share — your stories, your wisdom, your strength, and most of all, your love for your daughter.
This post in particular truly moved me and brought tears to my eyes. I could feel your pride and your love practically leaping off the page (though this post is no exception because I always feel that from you!). I’m so proud of Schuyler!!
So much of what you write in your posts I can relate to and empathize with. My daughter, Chloe, is 7 (going on 8 this July) and was born with Down syndrome and autism. We we’re also told she had something called “apraxia”, an expressive language disorder which prohibits my precious love from being able to communicate with us fully.
Chloe started speaking just before she turned 6 years old and now can say 2 and 3 word combinations/sentences. But speech overall is a struggle for her, and like you, I do everything in my power to help her. It’s a constant battle we face every day and yet, the silver lining is that it also compels us to appreciate the little things in life that we all take for granted. Every new word is one we celebrate; every sentence or 4 word phrase a reason to get out of kazoos and rejoice (literally! ha!). 😉
To hear that Schuyler went to her own IEP, advocated for herself and defended the things she knew were best for her and the things she wanted — well, reading that was PURE JOY. I dream of the day my girl can do the same; the day that she can go into a room full of all her teachers (which in our case, are teachers that for so long doubted her and complained) and tell them with her own words what’s best for her and what she wants. And I know the words “iPad” would be on her list as well! That thing has done WONDERS for her!
What a huge accomplishment and a milestone to be celebrated! Keep fighting the fight! She’s doing great!
It’s always nice to hear about Schuyler’s victories. I’m sure the district is working off of a list of allowed technologies, but I think that will change. If I’m not mistaken, we’re talking about $thousands versus $hundreds for the hardware, right? There’s an obvious cool kid factor, too. Best to all of you as usual!