Ask the Advocate: You Are Your Loved One’s Best Advocate

I recently had the opportunity to testify at a New Jersey Assembly Education Committee hearing on a proposed bill that would require bus drivers and aides to be trained on how to interact with students with special needs. It is important for those who do not “walk in our shoes” to understand our stories so we can work together to make improvements. Below is part of the testimony I shared to illustrate the relevance of this bill in my family’s life.

My testimony

“It seems like a lifetime ago that my son, who is now 20, started school and took his first bus ride. I can still remember the anxiety and anticipation I felt walking him to the bus for the first time. He was 2 at the time, and a few months earlier he had barely learned to take his first steps and was only able to speak a few basic words. This picture is not one most ‘typical’ parents encounter. Usually, children ride the bus the first time when they are older both chronologically and developmentally. By that time, they have reached many milestones. This, however, is not the reality for parents of children with special needs.

Over the years, through my own experiences and those of other families I have encountered, I realize what a leap of faith I took that first day — and the many days following — that I sent him on the bus. Many of our children can be on a bus for as much as an hour. It amazes me when considering the amount of education and specialized training states require of special education teachers that there is no significant requirement for education or specialized training of those who transport our children.

The bus drivers and aides on school buses are not even required to have basic training specific to individuals with special needs; however, our children often have no way to effectively communicate their needs. I can recall a situation not that long ago when my son started exhibiting behaviors on the bus that led to the bus driver filing a report for inappropriate behavior. My son had been riding the bus without any behavioral issues for many years.

When I received the report, I was confused and disheartened. I spoke to my son about why he was having such difficulty on the bus. Through our long and cryptic conversation, I was able to piece together that instead of having an assigned seat, the aide on the bus placed the children in different seats on a daily basis.

My son tried to advocate for himself, but his inability to communicate well led to what was misconstrued as defiance. The aide did not understand that the idea of changing seats challenged his need for structure. Structure is vital for many individuals with special needs to enhance their functionality. 

Once I was able to determine the basis for the disagreement, I was able to speak with the driver and the aide. They were very gracious and apologetic for not understanding where my son’s frustration stemmed from, and the issue was then resolved.

Demonstrating a need

Although this particular situation was relatively innocuous, it demonstrates how the bus driver’s and aide’s lack of training created an unnecessary problem. Many families have stories illustrating how a lack of knowledge, whether simple or complex, could have a detrimental outcome for their children. It is important to remember it is our responsibility to be a voice for our children whenever possible.

This bill passed the full Assembly and Senate vote and made it to the governor’s desk. However, it was not signed by the deadline to become a law. I have been informed that the bill will be reintroduced this year. Therefore, it will be even more essential to continue to work with the legislature to advocate on the importance and priority of making this bill law.

Advocacy Tip 

Advocacy is not only about having a passion; it is about using our voices to share our experiences, as well as staying strong in our commitment even when we may feel defeated. Our children depend on us.

Submit your advocacy questions to Trisomy21@email.chop.edu.This column is not intended to take the place of a formal legal or medical consult.