Wednesday, March 4, 2009

Monsters in the Closet

Anyone who works with kids using AAC or some sort of assisted communication, or even assistive technology, needs to read this post by Schuyler's Dad. You know, sometimes kids just need to be kids without all the trappings that so often come with disability. They need to be let loose to fly through the gym, roll down the hill, scream their heads off for no other reason than it's just darn fun. They don't need adults hovering over them all the time forcing the tech on them. Don't get me wrong, the tech is great and can allow these kids to do so very much. But the tech also highlights the Monsters. It's good to shove the Monster in the closet now and again and just BE. How awesome is it that Schuyler figured out how to do that so well that, at least from her perception, her friends don't even know the Monster is there. Way to defeat that Monster, Schuyler!
And for anyone looking for a good blog to read that is both well written and insightful, Fighting Monsters With Rubber Swords is one of my top favorites. Rob is an excellent writer who tells it like it is without holding back and I look forward to each new blog post. It is a true gift that Rob has chosen to share the joys, pain, and sorrows of fighting Schuyler's Monster and all the other monsters of parenthood while raising a beautiful little girl in her struggle to be just like everyone else but still fiercely and uniquely herself.


  1. Alicia, I think maybe you missed something in Rob's post. It is actually a very sad story, a coming of age moment in the life of living with a disability. Schuyler's AAC device is one part of her "voice", of who she is, if her friends don't know she doesn't talk, if they don't know she needs the BBoW, if they don't accept the BBoW as part of her then they don't know who she really is and then they can't accept her for who she is. It isn't about Schuyler overcoming her monsters and playing with the other kids, it is about the other kids not knowing who she is. What we all want at nine years old, and for the rest of our lives, is to be accepted. Schuyler is starting to realize the impact of being different on being accepted. Rob's story about Schuyler sitting in the tea cup in the mall and running her own mini-workshop on her BBoW is much more a testimony to overcoming her monster.

  2. I didn't miss Rob's perspective of the story and in fact read all the comments that had been posted at the time I read the post and agreed with them. I agree that the story is sad from the point of view that Schuyler is starting to not only notice her differences but to care about it and that this is heartbreaking for her parents. Schuyler has been raised to be different, to be own unique self, and her disability has little to do with that. Rob and Julie would most likely have done the same had Schuyler not had a monster to fight. She has been encouraged to celebrate being different and not to care what others think. I also saw Rob's sadness in realizing that his baby both understands she is different, that she truly gets the impact of her disability, and that she is growing up enough to figure out how to solve problems on her own and maybe even the heartbreak of realizing your child fears you won't understand how she feels and she doesn't need you in the same way anymore; she's no longer your "baby." His description of those sad eyes as she communicated her simple message of explanation broke my heart too. And I saw the guilt Rob felt in doubting his child; of assuming she was just being stubborn or defiant or not understanding the importance of the BBoW and then realizing she DID understand and had a good reason for her choices and he hadn't given her the credit she deserved. I've been there; I've delivered that stern lecture before finding out the whole story and then felt horribly guilty and heartbroken over the unintentional pain that caused. Believe me, I'd probably own stock in a Purple Cow by now if we had them here. (grin) I also realize that the BBoW is one part of Schuyler's voice and her best interface for communicating with those who don't know "Schuyler speak." But I don't think the BBoW IS Schuyler (and I don't think that is what you are saying either); it's one tool among many that she uses, albeit a powerful tool. I was going for a different perspective with my post; more along the lines of stepping back and thinking about how often I as an adult push what "I" think is best on my students and sometimes "force" the issue of using tech or whatever. Sometimes it's just better for my students to let them "be" even if it means that expensive device sits on the sidelines for awhile. Sometimes what is important to me and my long range thinking is just not so important to the child who is "in the moment." I read Schuyler's sadness as being torn between doing what she knows is "right"/pleasing the adults in her life by using the BBoW (not sure that's coming out right, sorry) and "fitting in" with her peers, or at least fitting in according to her perceptions. And this choice makes her very sad; it's a no win situation for her. She evaluated her options in the moment and made the one that was best for her at the time even though she knew it would result in a sad confrontation with her parents whom she loves above all else and would do anything to please, and that she would have to face their disappointment. For so long most of Schuyler's world has been her parents. As she grows older, however, more and more of her life will be spent outside that safe circle and that is heartwrenching for any parent. I suspect her peers have figured out she doesn't "talk" like they do and I also suspect they plain don't care. It would be interesting to be that fly on the wall and watch those interactions. When Schuyler is ready she will introduce the BBoW on her own and probably learn that she is the coolest kid in the group because of it. Should she be forced to do that before she's ready? I don't know. Maybe this opportunity to forge relationships without her Monster looming over her shoulder (in the guise of the BBoW) will result in SCHUYLER being the focus rather then her Monster and the tech she uses to fight it. When she does finally bring out the BBoW, chances are it will get some attention initially because of the novelty and then simply be assimilated as part of Schuyler because the other kids already know who she is. Tech is fantastic armor to help combat those disability monsters but that same armor can also keep out the rest of the world. It has a tendency to draw all the attention to the DISability rather than the Ability, if you follow me. How often do people "talk" with an AAC user while staring at the device rather than looking at the person? How easy is it to finish an AAC user's thoughts for them because the conversation is moving slowly? Or worse, do something else or participate in another conversation while the AAC user is formulating a response. How many people see the the custom wheelchair, O2 tank, trach, switches, etc. rather than the PERSON right in front of them? I've been guilty of all of those things and I work with people with disabiities every day. It's easy to forget the perceptions of the uninitiated when the "disability world" is your usual universe; you just stop seeing all the "stuff" after awhile. Schuyler is a very bright, intuitive, and perceptive young lady to have figured out how to make a situation work for her. Rather than holding back and sitting on the sidelines huddled behind her disability, she shoved it in the closet, so to speak, and marched out into the world. What courage that had to take! And what courage to essentially defy her beloved parents, take the anticipated lecture, and then explain herself to them calmly and rationally. And so yes, I think this is an example of Schuyler winning a battle against her Monster. Every battle comes with a cost. Darn growing pains. I think they hurt most when it's your heart that's growing.

  3. Hi Alicia,
    I enjoyed looking around your blog today and will come back to look at some of your older posts when I have a bit more time.