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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Thursday, January 13, 2011

Video - Mom Speaks with the Director of Special Education

Have you had to face this type of situation???

I experienced this same situation with my now 23 year old daughter, Tamarah, when she was in the 2nd grade.

From infancy to age 3 years, Tamarah had chronic reoccurring ear infections, which led to a speech impairment and minor hearing loss. Following the placement of ear tubes on numerous occasions and 2 years of speech therapy, things worked themselves out for the better for her.

It was apparent when Tamarah started school that there was a problem. She had trouble recognizing her ABC's and core reading words. By the middle of 1st grade, I had a parent-teacher conference, at which time I voiced my concerns about Tamarah having trouble reading. I wanted her tested, so that she could be placed in a special Ed class for extra reading help. The extra attention and help that she was getting at home from me didn't seem to be helping to improve her reading ability. I was assured that she wasn't that far behind and by the end of the school year, her teacher expected that Tamarah would catch up to her peers in her reading. Not knowing any better I bought this explaination.

By the end of the first grading period of Tamarah's 2nd grade year, she was still having problems reading and comprehending what she had read or what someone else had read to her. I requested a parent-teacher conference. It took 3 weeks for the teacher to get this conference setup. Myself, the assistant principal, the schools Special Ed teacher, the school counselor and a couple of other people whom I can't recall.

To make a long story short. I stated my concerns and requested that Tamarah be tested. We all went around and around on why I felt that she desperately needed some type fo formal testing and the members of the meeting stating why they felt that she didn't. By the end of the meeting I was soooo frustrated, but I had won the argument. They agreed to test Tamarah.

It took 2 weeks for me to receive the necessary paperwork that I needed to sign before the testing could be completed. And yet another 2 weeks before the testing actually took place. Once I was notified that the testing had been completed and that Tamarah wasn't eligable for special placement for reading help. I requested a meeting so that I could have the results of the testing explained to me. Come to find out all that the testing intelled was Tamarah reading from a long list of words! Come on, she was able to read words from a given list. THAT WASN'T THE PROBLEM OR EVEN MY CONCERN!

Being I was getting nowhere, I just dropped the issue and gave Tamarah even more of my undivided attention at home with reading and reading comprehension.

At the time I didn't realize that as a parent I had certain rights. Having Timmy has taught me things that I wish I had known many years ago.

*A parent has the right to request that their child be tested when there is a concern. And the school system MUST preform these test to a certain standard.
*A parent has the right to be present during the testing.
*A parent has the right to know who will be doing the testing and under what enviroment the test will be conducted.
*A parent has the right to know what materials, strategies and techniques will be used during the testing.
*A parent has the right to request a meeting in which the test results are shared and explained.
*A parent has the right to a written copy of these test results.
*A parent also has the right to take their child for testing by an independant person not associated with the school system for a second opinion. And to have the opportunity to present these findings to the team memebers involved on the school level.

My advice to parents of a Special Needs child; know your rights and DEMAND what you feel your child needs and deserves in order to be as successful in school and life to the best of their ability.

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