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Advocating for Your Child with Special Needs

As parents, we want to know our children are being well cared for when they are not in our presence. We want people to understand who they are as unique individuals. We desire for them to be nurtured and challenged in a way that works best for them. As parents of children with special needs, this desire can be even more prominent. This applies not only to time spent at school, but also when meeting with doctors, therapists or any place where they might need someone looking out for their best interest.

Because no two children are the same, it is important for parents to advocate for their children. So, what does this look like? Deb Yoder, a counselor at Carey Ridge Elementary School in Westfield, and Jennifer DeMotte, a parent of a child with special needs in Indianapolis, provide insight into how we can become the best advocates for our children.

 

What is your experience with advocating for your child? 

DeMotte: Our daughter is non-verbal, so advocating is pretty much my full-time job. When Ali was a baby, I quickly discovered that with more complex medical issues, you need a team of more complex medical doctors. I learned that it is OK to question a diagnosis and respectfully disagree. A parent knows best, and if the diagnosis doesn’t seem to fit, ask questions and keep reviewing their medical history until you feel heard. Challenge statements that don’t make sense. Ask for medical records and copies of tests.

What can parents do to advocate for their own child?

Yoder: Gain as much information about your child’s special needs as possible and know what your support resources can offer. Get to know your child’s teacher and their teaching style. Make an appointment to talk outside of school, and give them information about your child. Keep in mind, the teacher is your ally. They want what is best for your child and to make sure your child is learning to the best of their ability.

DeMotte: Research best practices and try to come up with several options for care. Be prepared to compromise, but also know when to stand your ground. For our daughter’s health issues, I stood firm until we had a diagnosis that made sense. At school, there are many moving pieces, so I’m willing to try a few ideas until we find something that works.

I also recommend being present. It’s a lot easier to make recommendations for your child’s day if you know what their environment looks like. Volunteering allows me to see how the classroom works and what her challenges and successes look like.

Also, be aware of what is being said. Often, we have discussions about our children as if they aren’t there. Don’t be shy about stopping the conversation and reconvening. I always try to address the things that our daughter does well and the progress she has made. Especially for those with special needs, there is a constant focus on “What can we work on next?” to help them reach age-appropriate milestones. Imagine if at work, no matter how hard you worked and how many successes you had, all you heard was, “Here are all the things you haven’t done yet.” If possible, let your child express what they think they’ve accomplished and what they would like to work on, and then meet alone with your team to discuss anything further.

As parents, we want to provide our children with what is necessary for them to have the best chance at success, both now and later in life. By advocating for your child, you are helping to provide that for them. 

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