Tuesday, November 27, 2012

Not So Dandy: Slice of Life

A friend who lives north of me called to talk about her son. My friend's son has been diagnosed with Dandy-Walker variance. His specific brain variance results in poor motor control, slower processing and some quirky behaviors. He does not have the actual syndrome--he does not haveobservable or drainable fluid in his brain. Though developmentally delayed, he saw physical, occupational and speech therapists as a toddler and young child. He entered elementary school as a regular student, mainstreamed K-4. He is  smaller than children his own age. He is differernt. Richard Allington once said during a keynote presentation that 100 years of educational research taught us just that: kids are different.

Image search results cropped.

When I started researching and looking at images of Dandy-Walker brains, I noticed difference. They don't look alike. The malformations have similarities but  the brains (as in real life) look differnt, differently formed or differently affected.

His elementary school recently told the Mom that he could not be in a regular class. The teachers couldn't give him enough support. The Mom was told that her son was distracting or pulling too many instructional resources from the rest of the students in the class. The school's solution was to put the child in a sheltered exceptional education classroom. The only problem there is that this particular child is high functioning (congnitively) in comparison to the other children in the sheltered room. He scored less than five points below a level three on the reading and math sections of our state assessment test as a forth grader. Level three is considered passing for fourth graders.

So what do you do about that?

What do you do as a parent? What recourse, aside from hiring an advocate, do parents have?
As a teacher-parent my defaults are: talk to the teacher, talk to the principal, and or  talk to a district representative. I've never had to go to a school board member or government representative. My friend has talked to the teachers and to the principal and even to the school board. She has been told that the diagnosis she recieved from Shands Neurosurgeons is not valid in the county and that the school board only recognizes assessments performed by school-based or district psychologists. She has been told that funding has been cut and that there are no resources to provide para-professionals for students like hers to be mainstreamed. She has been told that the teachers don't know what to do or how to support this child.

I am amazed by this. I know that one year I taught a boy who had a para-professional accompany him to each of his classes; one year I taught a girl who also was accompanied by a para-professional every day. Both were differently abled and I modified my instruction and the curriculum in order to meet their needs and help them grow as a person. One of the student's parent journaled with all of the high school teachers several times a week, sometimes daily. We wrote notes about the student's activities, progress and homework and had a place to share or address concerns in the journal. My friend said that teachers did not follow through with journaling for her son. I am astounded on several levels.

One, I'm a teacher. Like many of you, I am a passionate teacher who believes in doing right by the students in my class.  Penny Kittle says it better than I can. She echoes my heart when she says, " “I believe you’ve got to do what’s right, every single day of your life, even if the rest of the crowd isn’t. Teaching is about honor and goodness and mercy. You either live up to the calling of this profession or you don’t, and most likely no one will ever know but you.”  Before I had my own child and saw teaching through the eyes of a parent, I thought all teachers operated by those principles. Unfortunately they don't.

So what can a parent of an exceptional child do? What should they do? Do you have to become an activist or threaten legal action in order to secure an education for your child? Is it common for parents of such children to do that? This is beyond my realm of experience.

One solution we talked about is tutoring at home. Certainly, I've read plenty of teacher-parents' blogs who talk about providing rich educational enrichment for their children. I feed my own child books and encourage him to write and develop passions. But my son is not a Dandy-Walker child. My friend needs resources that fit or work for children with Dandy-Walker. Do you know of any?

This parent wants what any parent wants for her child. She wants him to be able to grow up and have a life, to be self-suficient, to be happy, to be thoughtful and  productive. She feels as if he has the ability, but she doesn't know how to get him there. She's at a stuck point with his school.  As she pulled in to pick her son up from school, we said our goodbyes. I haven't seen her in some time, but we've known each other more than half our lives now. She took a deep breath and tried to say goodbye. Her voice broke. I teared up. We were both trying not to cry.  Our voices were whispers. Parenting is hard. Sometimes scary.

When my son gets upset about some unfairness at school or on the basketball court I tell him it's okay to feel upset, but that feeling upset will not change things. Change follows action. Writing is one way I act to make changes in my classroom, in my thinking and in my world.

If you have ideas, we're listening and we would appreciate any helpful advice you can offer. Thank you for acting by sharing your thinking with us in comments.


  1. Wow. This saddens me. I cannot imagine not working to help this child in my classroom. I have also had many one on one paraprofessionals in my classroom. I try to work hand in hand with case managers of some of my students. I don't know the law in other states, but doesn't this child have the right to an education in the least restrictive environment? I don't really have an answer for you, but I think your friend should check the laws of her state.

  2. I do believe what Penny says, that one does what one must every second, Lee Ann, & I also know that all teachers do not. I won't tell you stories I know, but they are out there, like your friend's. My first thought is to ask if there's a possibility to change schools, to see, even in the district, if another school will teach this child. Second, if they won't accept the diagnosis, don't they have to do the testing themselves in order to see what's happening? If they are not making progress, I'd get a lawyer that is well versed in the ADA. Best to you & your friend.

  3. Wow, how sad that there are no parapros to help because of funding cuts! It definitely sounds like they are not following the law to place him in the "least restrictive environment", especially considering his cognitive level. (I think that's a national law?) Good luck to your friend!