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ADHD, LD, and an Educational Horror Story
Q: Please, I need help for my 12-year-old son in terms of what would be the best educational placement for him. This is such a horror story that has left us with seven different educational placements. I thought I was doing the right things by getting an evaluation at one of the world's best hospitals when he was five, empowering myself with research, attending LD conferences around the states, exercising his civil rights, and providing regular outside support for him and me. All of this has only brought more heartache, pain, and a sense of betrayal by a system that has failed us. In our case our exercising his civil rights only brought more adversary relations, which are beyond repair between so many of the players that are designed to help. The labels have hurt him greatly with misconceptions, and truly have overshadowed his strengths, wonderful qualities, and the beautiful spirit that God gave him. He is going to be placed in his seventh placement on a two-week trial this Wednesday. He has been so underserved in all of these placements. His educational needs have never been addressed appropriately. His diagnosis of ADHD at age five only created IEPs that focused on behavior. When the same IEP was not working after three years, we knew that further assessment (possible LD) was needed. Another hospital clinic in our area confirmed LD. Perceptual problems, dyslexsia, etc. were found. Three years later, this continues to be left unaddressed. There is so much to say that happened between these lines. Please help us. You truly are my last hope.
A: How frustrating for you to have put your trust in institutions that are supposed to help you solve your problems, not make new ones. It sounds as if you have lots of information about your son, but that it is clouded by different impressions and different and confusing labels.
It seems to me that what's missing here is someone to take a fresh look at all the information that has been gathered and put it together into a document that tells his story (and yours) in a straightforward, objective manner. I do hope that you have given your local school system the chance to put all this confusing information into perspective, and come up with a program that meets your son's needs, since it's their job.
If you have approached the school, but are disappointed with their response or with their plan, then you may need to enlist the services of an advocate. This is a person who is trained in special education policy and can help you communicate with the school in a way that gets results. You need to be clear not only about your rights, but also what the school is obligated to do for your son. You can get the names of special education advocates by calling the Office for Civil Rights, or a local support agency such as the Learning Disabilities Association, or any organization that deals with the rights of persons with disabilities.
You may also need to have an independent professional (a school psychologist or neuropsychologist) look at all of the test data and school records to help you present a clear and unbiased picture of your child. Contact the State Board of Registration of Psychologists in your state capital to get the names of individuals who specialize in work with children with disabilities (in your case, ADHD and LD). Whatever you do, try to find someone the school system can respect. Ask the professional and the school how they feel about working with each other. This step can save a lot more time and will help you avoid frustration.
If you approach the school system with reasonable requests that are based on facts, and they do not respond in a way that you feel is appropriate, then you have the right to have the case heard by a mediator (contact your State Department of Education's Department of Special Education, to find out what you have to do to take this to mediation).
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Jerome (Jerry) Schultz is the founding clinical director of the Learning Lab @ Lesley University, a program that provides assessment, tutoring, and case management services for children with learning challenges. Schultz holds a Ph.D. from Boston College, and has completed postdoctoral fellowships in both clinical psychology and pediatric neuropsychology.