Lessons in Learning: Three School-Based Reflections for Caregivers of Children with Disabilities

Looking back across my son’s 13 years of elementary, middle, and high school education, I would do some things differently. When he was in 3rd grade, my son was identified with a disability, and while he thrived in so many ways, I would have made different choices along the way if I had known then what I know now. Being a teacher as well as a mom of a child with a disability certainly had me trying to walk the delicate—and often complicated—line between the reality of how schools “do school” and what’s best for my child. As a young teacher-mom, I tended to side with the school; at least, that’s how I saw it then. Now that my son is a young adult, traversing a new world as a young man with a disability, I realize that my interpretation was wrong. There should be no SIDES. The school and the parents must be true partners for the growth and success of their student. And better yet, once the child is old enough—for us that was middle school — bring that child onto the team. Because it is the STUDENT who we are advocating for in the first place.

Those years as a parent of a child with a disability, and now as a parent of a young man with a disability, inspired three key lessons learned that I would like to share with other caregivers:

1. Know your rights as a parent or caregiver of a child with a disability. I’ll admit, the parents’ rights document that you receive from the educational support team (the Admissions and Release Committee, or ARC) is very hard to follow – even for educators who hear that information numerous times. A very basic interpretation is that your child’s information is confidential and that the decisions made for your child are a team effort—and the parent is part of the team. Ask for a simple explanation of those rights because they are important to understand. There are also some helpful resources for parents and students on Kentucky Department of Education’s Special Education website.

2. Involve your child when appropriate. I am a huge proponent of youth being a part of decisions that affect them. The child knows him or herself the best. At the very least, I suggest the parent and/or teachers interview the student to find out how he/she would create the best learning environment for her or himself. Research shows that when students set goals and are engaged in creating the path to achievement, their trajectory towards meeting those goals is higher than those who do not. The team assembled to assist each child has the responsibility to look at the results of how that child performs, set goals for success, and then determine the best path toward achieving those goals. My son became a member of his team in the 8th grade, and we saw his motivation and follow-through at school increase because he had a hand in developing his own plan.

3. Communicate often. This is the area I most wish I could do over. Being a teacher, I didn’t want to be “that parent” asking for special modifications and seemingly enabling my child. In reality, if a child has an identified disability, then providing them with modifications and accommodations within the school setting is NOT enabling them to become dependent upon adults or technology or extended time or a “reader.” The purpose of Individualized Education Plans’ (IEPs) targeted accommodations and modifications is to level the playing field so that the child with a disability can learn at a similar level as a child without an identified disability. If you are a caregiver for a child with a disability, be sure to ask questions when you don’t understand something that you’re trying to help your student with. Don’t hesitate to send an email or request a phone call from a teacher to remind them that your child needs extra time on a project or a worksheet or whatever accommodations her or his IEP requires. When I was a teacher, I appreciated the reminders, and I know other educators feel the same way. Some teachers have over 100 students, and keeping track of 100 different individual needs can be a challenge.

Being an advocate for your child’s education is one of the key roles we have as parents and caregivers. My new favorite website for caregiver-advocates of kids with learning and attention issues is www.understood.org, which includes a parent toolkit, updated research, easy-to-understand explanations of legal terms, and other tangible resources such as “10 Ways to Be an Effective Advocate for your Child” by Geri Coleman Tucker. Seeing yourself as a key part the educational team, rather than an outsider, will guide you in advocating for what’s best for your child.

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