By Chrissy Bernal
One of our twin girls, Sienna, is special needs. Aside from being a Primordial Dwarf, having conductive hearing loss and glasses, she has an unknown variant of a syndrome called Dandy Walker. It's fairly unheard of, so it's not really clear what impacts it has on people who have it.
When she was born, doctors told us she would be a vegetable if she survived. However, she is now in 7th grade and is hanging with the rest of the young teens fairly well.
Schooling her has been a challenge. Since the range of what she understands and doesn't understand seems to be somewhat unpredictable, it makes it hard to determine her individual path. She seems to understand things we are surprised she gets and then doesn't quite grasp things we thought she would.
Regardless, my husband and I have always stressed that she was to be included in the mainstream classes at every opportunity.
We have had some sort of issue each year (not Cy-Fair ISD) beginning from the 1st grade where the teacher put Sienna in the back of the class and gave up on her. (Remember, she has hearing aids, glasses and is the smallest person in the school. So, the back of the classroom isn't the best place for her.) She didn't include Sienna in the classroom assignments and was very mad when we questioned her.
Other issues we've had included the year where she wasn't able to run for Class Representative because they "lost the paper" I signed giving her permission to run.
We have addressed each issue and have fought to get each corrected as best as possible.
Well, at the end of last year, we selected her classes for 7th grade. She was very excited about choosing Electives and selected Choir as her 1st choice. She got it! :)
After the first 6 weeks, she was removed from choir (without our knowledge or permission) and was put into an "elective rotation" with the other Special Ed student in her choir class. They were the only two on this new rotation--and were the only two Special Ed students who had been in choir. The reason given for the rotation was to give them an opportunity to try out different electives. Well, I might have bought that if one of the "electives" wasn’t learning how to re-shelf books in Library.
Needless to say, we knew that was very wrong. After being unable to get it corrected on our own, we were forced to seek legal counsel.
To make a long story short and without going into too many details, we finally got it corrected. However, my husband and I are faced with a new dilemma now.
A parent of a younger Special Needs child made us think about something. While the other issues we've dealt with have been relatively minor, this last one was so underhanded and fishy that we were forced to seek legal counsel. So, is this incident "the straw that broke the camel's back" so to speak? It made us wonder what else has been done that we don't know about. Has anything been done to children who don't communicate as well as Sienna?
This particular parent's child wouldn't have been able to communicate like Sienna did in this case, so it could have gone unnoticed. If we don't put the school on some sort of official notice, would we be sending a message to them to simply do what they want and follow the "ask for forgiveness and not permission" mentality? Would we essentially be enabling the school to not have to worry about properly following protocol?
My husband and I are not sue-happy people, so we weren't too fond of that avenue. However, we thought of working on getting some sort of a group officially established to educate and act as advocates for Special Needs kids and their parents. I understand that some school districts pay for this sort of service for their Special Need kids, but unfortunately ours does not.
Have you heard of this sort of advocacy group? Do you have similar experiences? Thoughts?