My Daughter Sarah
When Sarah was born she was a blessing and a dream come true in my life. She was a beautiful baby and very good natured. Today Sarah is a beautiful 8 year old and she continues to be a blessing. She is known for being a friendly, outgoing and talkative. This wasn't always the case though.
When Sarah was very young, it was hard to understand what she was saying. It seemed as if most of her talk was gibberish. When I asked the pediatrician about this I was told different kids develop differently and not to worry about it. When Sarah was 3 she started preschool so that she would be around more kids her age.
Although there was dramatic improvement in her speech, there was still some concern as to whether or not she may have a hearing problem that was impairing her speech. The preschool offered a hearing screening in the spring, but due to a family emergency we missed the screening. Since her speech was steadily improving we were not as concerned as we once were.
Sarah continued in the same preschool when she turned 4. Each day when Sarah come home from preschool I would ask her what she did in school. The usual response was "I dont know or I don't remember." It seemed as if I had to pry information out of her. I noticed when other mom's at school asked their kids what they did in school, their kids were excited and readily answered. Unfortunately, I didn't connect all the little pieces together to form the big puzzle. That year there was no hearing screening at the preschool. When Sarah recieved her report card at the end of preschool I was shocked to see the teacher commented on her being "immature". I should had questioned the teacher about this comment, but again, I didn't connect the pieces. Afterall, Sarah had made so much progress!
Sarah absolutely loved kindergarten and was excited about going to school. Having the time, I decided to volunteer occassionally in her classroom. This gave me a chance to get aquainted with Sarah's teacher and to build a good rapport with her. At the end of the first 9 weeks Sarah's teacher stopped me one day and told me that she wanted to talk to me before she sent home Sarah's report card. Eager to hear what she had to say I went to school to meet with the teacher. I was totally unprepared for what the teacher was about to tell me.
The teacher reviewed the testing she had done with Sarah. Sarah's scores were low in almost all areas having to do with anything auditory. The teacher informed me that if she had to make a recommendation at that point she would not recommend Sarah advancing to the next grade. I sat there astonished at what I was told. I didn't understand how she could possibly be so far behind at the end of just 9 weeks. The teacher and I discussed the possibility of a hearing problem.
I left the school that day bewildered and in tears, but determined to get to the root of the problem. I called the pediatrician to make an appt for a hearing screening but also called a place in the yellow pages that offered free hearing tests for people who needed hearing aids. They offered me an appt. that afternoon. We went immeadiately. The audiologist said Sarah had 100% hearing in both ears. I was suprised.
After seeing the pediatrician we were referred to an audiologist at the hospital. The audiologist did a very thorough evaluation of Sarah's hearing. He also concluded that Sarah had 100% hearing in both ears. I was happy, yet confused. If Sarah had 100% hearing, then what could the problem be?
Now it was time to take action to help Sarah catch up in school. I started buying educational computer programs to use with her. There was a teacher supply store not far from home so I went in search of ideas. Before long Sarah was starting to catch up and things seemed to be clicking for her. The computer games and activities from the teacher supply store were helping. Sarah passed kindergarten and was excited about first grade.
When Sarah started first grade, it was with alot of enthusiasm. It wasn't long though before the teacher and I both started to notice Sarah having difficulty with some of the class work. Again, the possibility of auditory problems were discussed. The teacher decided to recommend Sarah for a Child Study team for further evaluation by the school.
At this point I took Sarah to our new pediatrician and was referred to a local children's hospital for a thorough hearing evaluation. Once again, it was concluded that Sarah had 100% hearing in both ears. This time the audiologist and I talked more in depth about the type of problems Sarah had experienced over time and decided to do an in depth test for central auditory processing deficit (CAPD). The results were astounding!!
The CAPD evaluation consisted of 4 tests administered by the audiologist. On the Staggered Sporadic Word Test (SSW), Sarah displayed a moderate deficit. On the test of Binaural Seperation of Competing Sentences Sarah scored more than two standard deviations below normal for her age. On the Filtered Speech test, her scores were more than 3 standard deviations below the average for her age equivalent. On the final test for Rapid Alternating Sentences, Sarah's scores fell in the normal range. Summarized, all these scores were interpreted to mean that Sarah "exhibits great difficulty when competition or background noise is introduced. Test results are consistent with deficits in short term auditory memory, sequencing, binaural speration and figure ground and auditory closure skills." Wow!!! Being given all of that information at once was like being hit upside the head with a brick! The audiologist gave me some informational sheets about CAPD and some websites to look at.
Armed with the information from the audiologist, I went back to the school to obtain the results of the school testing by the Child Study Team (CST). According to the CST, Sarah's test results were as follows. On the Test of Non-Verbal Intelligence (TONI) Sarah scored a 135 (more than 2 standard deviations above the norm of 100). On the Test of Language Development-Primary (TOLD), Sarah scored a total Language Quotient of 85 (the lowest end of "average"): Listening Quotient of 85: Speaking Quotient of 85; Semantics Quotient of 82;:Syntax Quotient of 81: ad a Phonology Quotient of 96. According to the school report Sarah showed a "significant gap" between verbal and nonverbal scores and it was suggested that "further testing be done to detemine Sarah's needs." At this point in time it was determined that Sarah did not qualify for an IEP and the CST was dismissed.
I was mystified by the dismissal and determined that Sarah would still receive help despite the dismissal of the CST. Sarah's teacher encouraged me to continue to seek help for Sarah and not to give up. I remember the teacher telling me that I was Sarah's best advocate. It was not until much later that I realized what the teacher was telling me was so very true. I remained in continual contact with the school requesting help for Sarah. I heard statements from various school personnell such as; Sarah would be allowed to slip through the cracks and go unhelped: the school was not familiar with CAPD; and therefore was unable to help and that Sarah would qualify for help once she was failing in school.
After many phone calls back and forth and much persistence I received a phone call to come back in and talk to the school one more time. This time the school told me that although Sarah did not qualify for an IEP she did qualify for help through a program called Section 504 and that Section 504 is a plan covered by the American's with Disabilities Act. This plan was to offer accomodations within the classroom and would be set up for Sarah beginning in 2nd grade. Happy that the school was finally going to offer some assistance, I went home.
At the end of the school year I left 2 packets of information about CAPD at the school. One packet was to be included in Sarah's permanent record and the other was for her 2nd grade teacher. I also filled out a special needs form for the school requesting preferential seating for Sarah. At the beginning of second grade, I met with Sarah's new teacher to touch basis with the teacher about CAPD and to see if she had received the packet of information. Sarah's teacher has received the information.
Within the first two weeks of school, the meeting for the 504 Plan was scheduled. Accomodations such as preferrential seating in the front of the class, breaks during long tests, visual aids being used by the teacher, and reminders to "keep on task" , etc. were set up for Sarah. At this point in time, Sarah was still not going to qualify for speech or language therapy. Sarah continued to struggle with homework, especially in the area of writing sentences and expressing her thoughts. Monday night homework typically consisted of writing 10 sentences and almost always ended in tears. I still felt as if there had to be more help available for a child with CAPD other than classroom management and "coping skills".
*******(Sarah's story is not complete, however I wanted to begin. Please stop back to read the rest of her story.)*****
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