The Art of Advocating for Your Child with Special Needs
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.
Understand your child’s diagnosis
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 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)
• The Americans with Disabilities Act (ADA)
• Section 504 of the Rehabilitation Act of 1973
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 the legal rights, regulations and procedures out. Add these to the binder that has your child’s diagnosis information.
Be prepared for meetings
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, 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 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 emotional energy and bring you back to balance.
A Speech/Language Pathologist (SLP) shares her viewpoint
I asked Carol Foulke M.S., a retired Speech/Language Pathologist with over 30 years of experience in a public school setting, who served elementary through high school students the following:
From your perspective, what makes a parent an effective advocate for their child?
What is most often overlooked?
What gets in the way of parents’ effectiveness?
Here is Carol’s response:
“One of the most important things that parents can do is to know the state laws regarding special education. That way they know what is within their rights, what is reasonable to ask for, and what to expect.
If parents can let school staff know that they are educated on SpEd law without threatening or bullying, it can set the tone for working within the legal framework. A huge factor is the parents AND school staff working together as a team for the benefit of the child, and not as adversaries. Be in communication with your teacher of record.
Let them know about significant events (both positive and negative) at home, e.g., if there are changes in medication/dosage so that staff can help assess behavior changes.
Let the school know if there is a family member in health crisis, if parents are separating/divorcing, etc. Although these are ‘family matters’, they can have a major impact on the student’s performance at school. No need to get into too much detail, but let someone know that there is disruption at home.
I think a big issue that can get in the way of parents’ effectiveness is that they focus solely on what they want for their child; it is sometimes very difficult to be unbiased when dealing with our little ones! But remember that the school must take into account the welfare and educational rights of ALL of its students. Behaviors, poor work habits, etc., may be present at home, but not at school, or vice versa.
It can be a fine line to walk for parents… Demanding that their child’s educational needs are met while understanding that difficulties and differences may NOT equal disability under state and federal guidelines.
Bottom line…. WORK TOGETHER and respect the training and experience the school personnel have. COMMUNICATE with staff and play nice!”
Advocacy Supplies List
In order to be an effective advocate for your child you need supplies to help you organize the information and resources you acquire. You want to be able to access the information quickly.
Here is a list of supplies that will help you get started:
• Two 3-inch, 3-ring notebooks (one for your child’s file; one for information about your child’s disability and educational information)
• Index pages
• Contact log sheet (I kept this in the front of my binder)
• Small tape recorder, or record with an app on your smart phone. Sometimes it is challenging to write when you are listening.
• Stapler and staples, to keep multiple report/update pages together
• Calendar (I printed mine out blank calendars off the Internet and 3-hole punched them)
• Loose leaf 3-hole paper, or 8×11 notebooks with perforated pages that can be separated from the notebook easily and added to your binders. I used this paper for journaling as well.
• 3-hole punch for medical, therapeutic, and school paperwork
• Different colored pens, if you choose to color code as I did
• Package of sticky notes (again, multiple colors)