Parents are natural advocates for their children. We love our children, and we want the best for them.
As a mother of four children, three with special needs, I know how important it is to advocate for my children. There is no one who will be more committed to making sure my children have access to the support, treatment and education they are guaranteed more than me.
My youngest daughter was my second child to be diagnosed with special needs (each of my kids have different special needs). I was at first overwhelmed by my lack of knowledge and intimidated by how to best advocate for what she would require in school, when I did not yet know myself. I chose to dive in. Great hope impelled me. Here are important steps to take in learning to advocate for your child with special needs:
Accept your child’s diagnosis and become the expert about it.
Gather information about your child’s special needs diagnosis, recommended remedial techniques and treatment. Learn all you can. Break the information down into terms that you can understand. This will help others appreciate your child’s special needs when you share the information with them.
I needed to fully comprehend my daughter’s diagnosis and the recommended care and treatments (therapies). I felt I would be a far more effective advocate for my child if my knowledge about my child’s special need bordered on encyclopedic. I fast-tracked my education. I purchased books, highlighted passages, and wrote in the margins where I required further clarification. I went online to reputable websites and printed out articles. I highlighted passages and made notes in the margins of those, too. I created an impressive section of resources in my personal library about each of my kids’ special needs.
I asked my child’s therapists about treatment and outcomes, recommendations of what to read, what I might expect, and clarification of my questions. I did the same with my daughter’s teachers and therapists when she attended developmental preschool. I took notebooks full of notes. I was driven by my love for her as well as trying to assure she was physically, emotionally and psychologically safe.
I purchased two binders and subject dividers with pockets. One binder contained written records sections for my child’s initial diagnosis and follow-up reports; therapy goals and therapy progress reports; copies of bills; medical paperwork; IEPs (Individualized Education Plans)—the original and future updates; and teacher emails, notes, cards, etc. The other binder was my personal “education primer.” It held college-lined sheets of paper full of my journal entries; questions and the answers to them; definitions of terms—technical and layman; highlighted recommended resources; and printed articles about my child’s diagnosis. I made sure every paper that went into both binders was dated.
Learn about your child’s rights.
Legally, children with special needs are entitled to an “appropriate” education. Your child should have access to “specially designed instruction” (20 U.S.C. §1401) to meet their unique needs. Learn what this means for your child.
Become competent about the “rules of the game.” Research and understand your state’s and the federal education laws and regulations. These federal laws apply to children with special needs:
- The Individuals with Disabilities Education Act (IDEA) http://idea.ed.gov
- The Americans with Disabilities Act (ADA) www.dol.gov/dol/topic/disability/ada.htm
- Section 504 of the Rehabilitation Act of 1973 www.hhs.gov/ocr/civilrights/resources/factsheets/504.pdf
Do a search in your library or online to learn about cases similar to your child’s to answer your questions. Be informed about the procedures you must follow in your school to protect your child’s rights and yours.
Print out the legal rights, regulations and procedures. Add these to the binder that contains your child’s diagnosis information.
Build healthy relationships with your child’s team—therapists, doctors and school. This encompasses preparation and planning for meetings with your child’s doctors, therapist, teachers and aides. Be polite, firm and persistent.
Create a meeting agenda with your objectives, such as addressing issues or test scores, clarifying treatment or goals, identifying problems, proposing solutions, or firming up agreements. Focus on solutions. Share this ahead of time with the team members you are meeting with. This allows them to be prepared as well.
Take care of yourself.
Parenting a child with special needs is challenging, sometimes downright exhausting. We moms typically give and give, until there is little to nothing left to give. And then we find we cannot be the parents we wish to be for our kids.
Give yourself permission to put yourself first for a minimum of an hour each day. Have someone you trust watch your child if she is home while you embrace “me” time. Take a walk; sit in silence, garden, or do yoga. Do something that will bring you back to balance.
Judy M. Miller is a freelance writer living with her husband and four children. She is a Gottman Educator and the author of What To Expect From Your Adopted Tween, a guide for adoptive parents.
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