You will need to become an advocate for your child as she goes through the several steps necessary to determine what placement, modifications, and services will provide a free and appropriate public education. The steps in an individual education plan (IEP) process are: referral, evaluation, eligibility, annual review, and three-year assessment.
My son had problems as soon as he entered kindergarten while on treatment. He couldn't hold a pencil, and he developed difficulties with math and reading. By second grade, I was asking the school for extra help, and they tested him. They did an IEP and gave him special attention in small remedial groups. The school system also provided weekly physical therapy, which really helped him.
Parents or teachers can make a referral by writing the school principal and requesting special education testing. Some school districts automatically will set up an IEP for any child who has had cranial radiation as part of his therapy; others are extremely reluctant even to evaluate struggling children for possible learning disabilities. Therefore, it is best for the parent or physician to send a written request to the principal, stating that the child is "health impaired" due to treatment for cancer, list his problems, and request assessments and an IEP meeting.
Once the referral is made, an evaluation is necessary to find out if the school district agrees that the child needs additional help, and if so, what types of help would be most beneficial. Usually a multidisciplinary team consisting of at least the teacher, school nurse, district psychologist, speech and language therapist, resource specialist, medical advocate (whoever is serving as the hospital liaison with the school), and social worker meet to administer and evaluate the testing. Parents should always request that the ADA/504 coordinator be present at the IEP meeting. Schools call the teams that write 504 plans either Child Study Teams or Student Study Teams. (Its the same thing, just different names.) Areas usually considered in the evaluation process include educational, medical, social, and psychological.
Sometimes if hospital psychologists assessed a child, the district will accept those reports and just supplement their assessment with what was not done.
This past week we found out Tori's testing from kindergarten. Although she missed more than a third of the school year, she is ready for first grade; except for math, she was above the 50th percentile for all the other testing. She was in the 95th percentile for visual (identifying patterns). For math she was in the 5th percentile. We had really been working on visual stuff, and obviously it paid off. I am not going to worry much about math yet, as we just didn't work on things beside counting. My mom (a recently retired first grade teacher) was thrilled with the results, which were much better than expected. Tori was able to do practically all the beginning and ending sounds (identification) and got all the blends! Not bad considering we were also working on things like potty retraining and relearning how to eat when she started school in the fall.
Children with a history of chemotherapy and/or radiation to the brain require thorough neuropsychological testing, which is best administered by psychologists experienced in testing children with cancer. Most large children's hospitals have such personnel, but it sometimes takes very assertive parents to get the school system to use these experts. Your written consent is required prior to your child's evaluation, and you have the right to obtain an independent evaluation if you believe that the schools evaluation is biased or flawed in any way. However, you may be responsible for this cost.
Initially, the school was reluctant to test Gina because they thought she was too young (6 years old). But she had been getting occupational therapy at the hospital for two years, and I wanted the school to take over. I brought in articles from Candlelighters Childhood Cancer Foundation and spoke to the teacher, principal, nurse, and counselor Gina had a dynamite teacher who really listened, and she helped get permission to have Gina tested. Her tests showed her to be very strong in some areas, and very weak in others. Together, we put together an IEP which we have updated every spring. Originally, she received weekly occupational therapy and daily help from the special education teacher. She's now in fourth grade and is doing so well that she no longer needs occupational therapy; she only gets extra help during study hall. They even recommended her for the student council, which has been a tremendous boost for her self-confidence.
After the evaluation, a conference is held to discuss the results and reach conclusions about what actions will be necessary in the future. Make sure that in all written correspondence with the school you clearly express a wish to be present at all meetings and discussions concerning your childs special education needs. You know him best, and you and your spouse have the right to be there.
Parents need to be aware that children of very high intelligence unfortunately can fall into a gap where services may not be offered. This is because they may continue to perform "adequately," according to the school district standards (e.g. achievement scores within two grade levels of the childs age). Gifted children may receive good enough grades (As, Bs, Cs) even though their potential is that of an A+ student. These assertions may be unlawful if the child meets other eligibility requirements. In this case, parents should be strong advocates, and continue to seek special services through the school or private tutoring if they can afford to pay out of pocket for it.
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