Lucy Rocks

Lucy Comprehends

2011-08-20T10:23:00.001-04:00

I'm so proud of my little girl. She has had quite a summer of communication growth!

Happiest Lucy

2011-08-11T21:41:00.000-04:00

Have you ever seen this Lucy? Are you ready for this? Aren't you ready for more.

A Charmer of a Video

2011-08-09T07:57:00.001-04:00

If the setting isn't beautiful enough, the exclaimation at the end will make you smile.

Lucy Lovin Her Plants

2011-08-03T09:46:00.001-04:00

Lucy is encouraged to use her switch to shower her plants with recorded messages of love and adoration. She will use switches only when she cares enough. Something tells me she cares about her plants.

Excerpt from the inspiring book, Widening the Circle, Mara Sapon-Shevin

2011-07-30T09:09:00.000-04:00

I am reading the book, Widening the Circle and highly recommend. I can see the next few posting being dedicated to the sharing of Sapon-Shevin's profound words:

When we call others' dreams "unrealistic," we say more about our own limitations (of imagination and commitment) than we do about those whom we criticize. It is not unreasonable for all parents to hope that their children will have meaningful relationships with a wide range of people, receive an appropriate education and be seen as valued and necessary parts of the school community and the broader society. Some people saw the Civil Rights movement as unrealistic and impossible, and they argued that racial segregation was desirable and inevitable. Though those struggles continue, we are more conscious that our belief systems about what is possible shape our willingness to take risks and change.

I offer this passage as a call to arms. Will you join me?

Some observations from last school year

2011-07-29T08:47:00.001-04:00

Today, I've just got a couple questions rolling around my mind. There is a girl in Lucy's class that literally destroys things when she gets her hands on them. One day I witnessed the adults in the room make sure she couldn't get her hands on the $.29 pinwheel somebody brought in for a book report because she would tear it apart. Why are the adults in the room not finding things she can actively rip apart if that is what she is interested in doing. Maybe by pinwheel #101 she'd be interested in figuring out something else about it? Seriously, am I the only one who sees that path?

There is a boy in Lucy's class who is often crying. About exactly what we can only guess. He's not tellin. During an activity, I once saw him become very interested in the act of hitting a switch (an electronic activation device) turning on a fan that faced him. He loved it, clearly loved it. He certainly wasn't crying at the time. And, he was motivated to activate the switch again and again. Now wouldn't you think that no matter what the scheduled activity was the next day that his teacher's would notice that this was a learning opportunity for the boy and create choice options for him? I never saw that fan again and I bet he didn't either.

In my own classroom, I witnessed an Instructional Aid tell an eager kid with an IEP to put her hand down, she was asking too many questions. (mind you, this was during an opening activity in which I was introducing an artist to students) Yeah, I get that kids need to learn how to share the spotlight. They do. But is the answer to manually schmoosh the eagerness out of them by making them feel as though they've done something wrong by asking and responding? Or is it to give them the attention they need and guide towards the more appropriate behavior?

Man, nobody gets a smack down like a special needs kid. I think that sometimes we are training our "special" kids to fit in in ways that make us most comfortable rather than teaching to who they are. Which, by the way, is what is happening in the most progressive educational atmospheres. These are places that seek to gather information about who a child is and what drives them as natural fuel for the fires of learning. Isn't that what we want for our kids? It's what I want for mine...

My Worst Educational Nightmare

2011-07-26T07:46:00.005-04:00

I believe that my worst nightmare about Lucy's education has come true. Lucy is being treated as though she will not change and grow. She is being taken care of, i.e.: diaper changes, feedings, maintenance based care. I don't believe that Lucy's teachers see her as a learner or as an independent child.

I see Lucy as just another kid who wants to know about the world and is capable of knowing about the world she lives in. She is most capable of knowing, experiencing and learning when the adults in her life adapt situations and environments to fit her unique abilities and needs. What does Lucy like and respond to? How can we best position her so that she may access the environment? Are we communicating with her so that she is involved in the process rather than having things done to her? And so that she is building communication skills? She has them. You just have to slow down to recognize them.

I believe that we no longer keep kids like Lucy locked away at home. Now we keep them locked away from learning in the classroom they inhabit.

Excerpt From Recent Vacation Journal

2011-07-22T09:41:00.003-04:00

During this summer's vacation, my family went to two schools that changed or strengthened the way I feel about my daughters education. Yes, we visited schools on vacation, bookish, I know, but timely. I am seeking fuel for dealing with a nagging feeling about Lucy's educational opportunities that just doesn't sit well with me. We visited the Perkins School for the Blind and the Henderson Inclusion School, both in Boston. Both inspired me as places where kids are being taught, treated like learners. The professionals at these schools are people who believe in kids like Lucy. I wonder whether Lucy's teacher this year believed that Lucy can learn? I'd like to ask her principle if he feels his teachers believe in learning. (I guess you can imagine what I feel the answer to these questions are) How many other people out there believe in the learning of kids like my daughter? I believe that Lucy wants to an can learn. I know she can. She has learned and overcome so much.

Does this make sense to anyone else?

Meeting Patty

2011-07-21T07:18:00.001-04:00

It's been a long while, but it is time to reinvigorate the Lucy Rocks Blog in an effort to communicate with a community of friends and parents about these ideas I have rolling around my head. Ideas about Lucy, learning opportunities for her and other kids like her. Not to mention the masses of other kids who have lots and lots of good questions.

I'd like to begin by sharing a story that impacted me long ago, in the early part of Lucy's life with us:

Meeting Patty
I saw Patty at Visionaries and Voices (an arts org. supporting artists with disabilities) for the second time, two weeks in a row. She had been painting with a brush in her mouth the week prior. At that moment Patty appeared to be resting. She might have looked to a person who didn’t know any better, like she wasn’t paying attention, out to lunch. I wasn’t sure what kind of conversation I might have with Patty. Uncertain like you might be with someone who speaks a different language, but I decided to go and speak with her anyway. I went and said, “Hi, I saw you painting last week.” She immediately perked up and began moving her head side to side. As she did, the talking device on her chair began to speak out words in a slow cadence…”Hi..my name is …Patty… How ..are…you?” The most laborious and impressive form of texting. I immediately became engaged in trying to figure out how she is activating this device. And realize she is hitting a button on her chair – this, I recognize as a mouse click. But how is she moving the curser? Wow, a dot on her glasses speaks to the computer screen. I tell her my daughter is just learning how to use switches. This woman who I had subconsciously made assumptions about did something that still gives me chills. She typed/spoke, “Don’t let them tell you she can’t do anything.” She quickly assessed the situation, not needing me to connect the dots for her. In that one little sentence I realized Patty was speaking to me about the lofty, abstract concepts of empowerment and advocacy. What I can also expound from this encounter is that Patty knew that many people in Lucy’s life would see her for what she cannot do, or not believe hard enough that there are things she can do. As I embark upon the radical notion of creating a school where in even kids like Lucy are learners, I remain profoundly affected by the mind shift Patty offered me that day. Thank You Patty

Lucy Stands Over the Yoga Ball!!!

2009-06-26T20:24:00.005-04:00

This is just a short series of photos that shows Lucy's determination. She's smack dab in the middle of a therapy session working on bearing weight through her legs and giving Ms. Susan a load of heck.

2008-11-30T10:38:00.001-05:00

Hello Friends!

2008-11-29T20:29:00.004-05:00

You've stumbled upon our very first posting on Lucy's blog. I hope it becomes a fun way to stay updated.

Lucy is doing well. She is still attending the Perlman Center at Children's Hospital here in Cincinnati. She's up to four days a week and we couldn't be happier. I believe she also enjoys going to school for the interaction she has with both therapists and classmates. They've been truly amazing teaching Chad and I as well as Lucy. She has grown a great deal since she began there, both physically and emotionally. She has independence that we only dreamed of, with reason to believe in her future. And, of course, she fosters new strength within Chad and me with each passing day, both physically and emotionally as well.

I suppose the biggest piece of news is regarding our new home that we are currently in the process of planning and building. It's actually not a site of it's own, but set to take up a fair portion of a building in the neighborhood we love, Northside. The good news is that it is a one floor, open floor plan version of our home. We envision wheeled races around the inside and movies on the enormous walls.

We'd like to take an opportunity to give a special shout out to team Lucy: Shannon, Donna, Susan, Miss Carrie, Jim, Edie, Valerie, Mitzi, Megan, Erin and the long list of countless other Perlman Folks.

More updates as they come.