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 kids. 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 I am.
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.
First steps: Accept your child’s diagnosis and become an 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 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 kid’s 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, in fact. I was driven by my love for her as well as trying to assure she was physically, emotionally and psychologically safe.
Become über-organized
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; Individualized Program Plans, (IPP), the original and all updates; and teacher emails, notes and cards, etc. The other binder was my personal ‘education primer.’ The binder 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
Become competent about the ‘rules of the game.’ Research and understand the Province’s education standards. Be informed about the procedures you must follow in your school to protect your child’s rights and yours.
Alberta Education oversees all education for the province and is charged with ensuring children with special-needs have fair and equal access to education. Education must conform to the Standards for Special Education, and for preschool education, Standards for the Provision of Early Childhood Education. Do your research and print out legal rights, regulations and procedures. Add these to the binder that has your child’s diagnosis information.
Be prepared
Build healthy relationships with your child’s team: the therapists, doctors and the school. This encompasses preparation and planning for meetings with your child’s doctors, therapists, and 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 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 they are at home while you embrace some ‘me’ time. Take a walk; sit in silence or do yoga, for example. Do something that will replenish you and bring you back to balance.
Judy Miller, MA, works with pre- and adoptive parents, equipping them with new techniques and information, and encouraging and empowering adoptive families through difficult times. She is the author of the international selling What To Expect From Your Adopted Tween and Writing to Heal Adoption Grief: Making Connections & Moving Forward.
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