By Judy M. Miller
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 need in school when I did not yet know myself. I chose to dive in. Great hope impelled me. Here are some of the tips I learned on my personal journey.
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 about your child’s special needs. Break the information 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, discovered something I desired to learn more about, or wanted to share with others. I went online to reputable websites and printed out articles. And similar to my expanding collection of books about my daughter’s special needs, I highlighted passages and made notes in the margins. I created an impressive section of resources in my personal library about each of my kids’ special needs.
During each visit 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 notes—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 3-inch, 3-ring binders and index pages 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, and cards, etc. The other binder was my personal “education primer.” It held 3-holed college lined paper full of my journal entries; questions and the answers to them; definitions of terms—technical and layman; and highlighted recommended resources; and the printed articles about the diagnosis my child had been given. 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 the state and federal education laws and regulations. These federal laws apply to children with special needs:
- The Individuals with Disabilities Education Act (IDEA): www.dea.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 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 the legal rights, regulations and procedures out. Add these to the binder that has 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: items such as addressing issues or test scores, clarifying treatment or goals, identifying problems, proposing solutions, or to firm 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 or he is at home while you embrace “me” time. Take a walk; sit in silence, garden or do yoga. Do something that will replenish your mama stores and bring you back to balance.