Friday, February 17, 2012

Just you wait

When Abby was 4 years old I went a little ballistic at an IEP meeting. I know. Imagine that. Abby was most of the way through her 2nd year of special needs preschool and I heard things like this:

We have never seen her act like she understands anything.

You have to understand that your daughter is profoundly mentally retarded and I think it's hard for any parent to grasp...especially when she looks so normal. She is really very pretty.

Abby is in her own little world with little interest in anything other than socialization. She is very popular with the other kids. Even the typical ones.

I could go on and on. I flipped. I went home and over the next few days took the following videos. Unrehearsed...1st take videos. They show her following along in a book. Looking at the pictures as they are mentioned in the story by face pointing or slapping the character.


I showed that she understood colors and shapes. She would choose directly from 4 choices by slapping at(she cannot point) or by looking directly at he answer. With Apraxia....the worst part of Rtt Syndrome, you do have to wait anywhere from a few seconds to up to a minute for an answer. This is not something I have made up but scientific fact.

When I took the videos to school the director cocked her head at me and looked sad and said," You are her mother. We are never going to see what you do."


These videos have been used by Neurologists and lecturers from Harvard to Columbia and more..yet I can get no one to admit or agree that she can answer, choose and learn.

In the next few days or so I am going to attempt to gather video of her doing these kind of things again. Why? Because I can't seem to get through. I adore Abby's staff and I know they mean well but, they don't get it.

I have gone in and shown them how she pics yes and no. She can do it by eye gaze on a card and by direct eye contact or looking away. I have shown them how they have to wait if she looks at the wrong answer first...especially if she hasn't looked at the right answer. I have shown them how..if she looks at the right answer first she will not go looking for the wrong answer.

Why am I doing it again? This quote," She has Rett Syndrome. Just because she could do it then doesn't mean she can do it now."

Double ouch.

I have to wait till I can have someone here to film while I work with her but they will come.

You'll see

Just you wait


Anonymous said...

I am a speech-language pathologist and I have a student with Rett's Syndrome. I work in a special needs preschool. My student has the same abilities that your daughter has. She knows SO much. She knows her colors, shapes, letters, and some numbers. She uses a communication book to answer questions, but she is best with yes/no picture cards. If you look away, you might miss her responses because she may look at the card rather than place her hand on it.

That makes me so sad that professional educators have not learned enough about Rett's Syndrome to understand how much these little ones can learn.. not only how much they can learn but how much they can show us that they know. What they need to understand about it is that we can't write these goals with 80% accuracy. She might show us that she knows something once, but why does she need to know us again when she has already done it?

I cannot place videos of my student online because obviously that would not be legal, but it is amazing what my student can do. It is up to the person working with her to really be able to understand the special abilities that she has.

You know that Abby can do those things, and the ignorant educators should get to know Abby before they say she can't do things. The more you get to know a child, the more you spend time with her, the more you will understand her communication abilities.

Thanks for your blog. I read it quite a lot and it gives me support while I am working with my student.

CtysThoughts said...

We had a similar experience, Through perseverance, a lot of problem-solving, a little bit of table pounding, and meeting after meeting...our school finally understands, BELIEVES, responds, and encourages our daughter (with Rett Syndrome) to communicate what she knows through eye gaze and her Dynavox. This has changed her school world. I won't say it didn't wear me out to the point of depression to get there, it did. I won't say it wasn't mind numbingly frustrating, it was. But now we all reap the rewards. Keep going! It matters! You already know that. I hope in time they see it, too.