As with any parent, Kimberly and Steven want the best for their child, but the best doesn’t come easy. Their son Justin lives with Hunter syndrome, and their journey has been one of nonstop advocacy. They’ve learned along the way that being collaborative, flexible, and open-minded goes a long way.
Persistent, not pushy
Every year before school begins, Steven and Kimberly visit Justin’s new teacher to make sure he gets the most out of his time in school. For example, they need the teacher to wear a device that connects to Justin’s hearing aids and allows him to follow what’s happening. They also check out the room. They know from experience that there are ways to set up the room that work better for Justin. For example, he gets distracted easily, so it’s best to have a space set aside for him with dividers.
School systems don’t always recommend what you need, because those things cost money. You can’t be afraid to ask for things. Even unconventional things. I asked for a therapy dog to come in on a regular basis. It really helped him.
Most of the time, the teachers or administrators are able to address the needs and are happy to do so. But sometimes, though the teachers wish they could help, they lack the authority or budget. Other times they’re simply overwhelmed and don’t want to add more to their plate. Either way, Steven and Kimberly are polite but clear: they understand, but they’ll be continuing the conversation with school administrators. That may mean the principal, a special education administrator at the school, or even the director of special education for their district.
They’ve learned that “no” is not the end of the conversation—even if it’s the end of THAT conversation. They’ve seen the difference it can make for Justin to have the right tools, the right help, and the right opportunities. They keep going until they find the person who both understands those needs and can respond to them.
Collaborative, not combative
Kimberly and Steven have seen other parents of special needs children who are quick to threaten schools with legal action or outplacement to get what their child needs. Both are costly for the school. They’ve found it highly effective to gently remind the school that they would prefer to keep Justin there if the school can meet their needs.
Some parents feel at the mercy of the school, and that’s obviously not good. Others want everything 100% their way and sort of get tunnel vision. But what we’ve seen is that it can be limiting.
“We understand, because sometimes you have a visceral reaction because you’re so ready for them to sell your kid short. We’re so used to having to fight for Justin that sometimes we’re sort of ready to be offended when there really isn’t any offense going on there.
“We try to be open to what they’re showing and get the real facts. Because the educators have experience, and they draw from that knowledge. They may have an idea that will work better than what we had thought of. So you have to be open. Somewhere in the middle is what we aim for.”
This approach has worked for them over the years as they’ve built relationships with school administrators. Kimberly and Justin believe that most people want to help, even if they’re not sure how to right away. For them, it’s helpful to go into each new situation with an open mind and a positive outlook—while still standing their ground.
Tagged in: Parenthood, Caregiver, School systems, Speaking up
