As I ask the school to mainstream Delaina, I explained (again) about apraxia and how it effects her and controls her response time and even answers. As her mom, I beleive she understands most everything. Of course, until there is a cure...no one will know 100% what she knows. Her SLP that comes to the home, tested her and backs me 100% and she also claims that she is getting what we are teaching her. The SLP was a teacher, sp ed teacher and most important, for the last 1 1/2 years...Delaina has taught her all about eye gaze and patience needed with a child with apraxia. Question: the IEP team will "consider" what I am saying if I can provide documentation prooving that even though we test, retest we will not know what she knows. thank you for any help you can give... Nancy
I have consulted with Dr. Valerie Owen and her response follows...Kathy Hunter
am not exactly sure I understand the question or what constitutes 'proof' to the IEP team. But there is no proof of what she knows or does not know. If there was, it would not be a question in the first place. You really can't prove a negative (that she does not know or we cannot know).
The slow response time is do to the apraxia much of the time. It take so much of her energy (mental and physical) to gather herself to respond. Some days are good days and some days are not so good. But sometimes it seems to me that it's just a slow response. And sometimes, the slow response is because she really doesn't know the answer. That would be just like any student. Sometimes the student just doesn't know the answer. Rett Syndrome is not to be blamed for everything. Unfortunately, because of her disability, she has such a limited repertoire of communicative skills that all that looks exactly the same.
To me the issues are neither whether she understands 'everything' or not nor whether we can accurately assess her learning, but rather that she is given the opportunity to learn it in the first place. No student understands or learns everything taught in any classroom. To make that requirement places a discriminatory expectation on the student with the disability.
We do not, yet, have the technology or skill to be able to assess accurately 'everything' a girl with Rett Syndrome knows or does not know. I wish we did. But that doesn't mean we shouldn't keep trying. A teacher doesn't get a 'pass' because we can't always know what the student knows. Sometimes, it's just so clear. So, we can know some things the student knows. Other times, we have to make a judgment call. We can only make the least dangerous assumption that she can learn; which means we give her the opportunity making the learning as accessible as we know how, try our best to get her to communicate that learning through eye gaze or other method; and reteach if we believe it's close or move on. And honestly, some learning just can't be assessed using eye gaze anyway. The lack technology to understand should not be the reason we deny her the chance to learn.
I am happy to communicate with the school personnel if that would help or follow-up with the parent for clarification.
Valerie
Valerie Owen, Ph.D. Associate Professor of Special Education Director, Disability and Equity in Education Doctoral Program National-Louis University 1000 Capitol Drive Wheeling IL, 60090 847-947-5049 847-947-5049 fax vowen@nl.edu
Thank you for this response. Rett is so frustrating to me...can't imagine what the girls feel. Thank you Kathy and thank you Valerie Owen! Through this challenge, I am reminded of the wealth of wisdom and experience is on our side.