Last October I presented at a special needs ministry conference in Kansas City. This conference attracted speakers and presenters from all over the country, many of them from Key Ministry. I was chatting with one of my fellow writers, Sarah Broady, and a couple of other presenters from Michigan. We began to share our stories and backgrounds, and I told a story from earlier that year, when I about presented at my first conference, Key Ministry’s Inclusion Fusion Live 2018. I talked about how I humbly introduced myself as “just a dad.” This introduction was an easy way for me to make myself comfortable, but also acknowledged that I was not on the level of some of my colleagues who were published authors, ministry leaders, medical professionals and such. It was not a fair statement on my part. Sarah quickly corrected me with an affirmative, “No that’s not true, you’re more than that.”
That comment began a conversation between the Sarah and me that continued through the remainder of the conference, on the way to the airport, and even on the flight we shared. We discussed all of the instances in which we as parents were made to feel less than qualified to make choices for our children’s education or health, because we were not the so-called “expert.” We shared our experiences at our children’s schools, doctor’s offices and therapy clinics, many of them positive and yet some in which we were demeaned, put into a proverbial corner and made to accept advice.
Through this emotional churning, we decided this would make a wonderful topic for a workshop. I’m proud to say that Sarah and I will be presenting a workshop exactly on this topic at Key Ministry’s Inclusion Fusion Live 2019. If you are reading this after the conference, I still wish to explore these feelings with you in the context of this blog post, and allow you an opportunity to reflect.
Our workshop explores challenging issues, when as a parent you have been made to feel “not the expert” when it comes to your own child. While this demeaning can occur in a variety of settings, the area of focus for this post is the school setting.
Having spent over fifteen years in education, as a classroom teacher, preschool director and parent educator, as well as a special needs parent whose son has attended both public and private schools, I have a unique perspective on school experiences. My wife has also been a middle school teacher for more than fifteen years, and we have many friends who are also special needs parents. My son has mostly received a great deal of support in both public and private school, but in some cases he has not received much support.
My overall philosophy on education is that in general, schools and districts with more financial resources are usually better, and therefore serve our special needs kids better than less affluent districts. Schools with more resources often have better trained staff, better tools, resources, technology, and facilities. These schools are both functional and provide a pleasant environment. We have had a wonderful experience with our son’s local public school district in the last several years.
But has our recent experience with school always been the case? Absolutely not. We have had some challenging experiences in affluent schools. It was not an easy road that got us to our current school. Some of the potholes we experienced were quite heartbreaking, and definitely made us feel like we were less than experts.
A Challenging Experience
Our son began school like most children do at a private day care center. As a toddler, he was placed in a classroom of typical peers for his age group. A franchise of a national company, the day care center had a fairly good reputation and we felt good about the location. We took what we saw at face value and really didn’t question anything. Our son didn’t have a bad experience there, but we also didn’t realize what his true needs were, since we did not yet have a firm diagnosis.
When he was finally diagnosed with autism, we looked at some options for schools. We had an IEP meeting with our then local school district, but weren’t crazy about the program. With my background in Montessori education, we contacted the director of a well-respected Montessori school in a wealthy suburb near us. We felt it was the perfect spot, and while he was in their toddler program, the classroom exactly suited his challenged motor skills and cognitive/speech impediments.
Unfortunately, the three-to-six year old classroom became a place of conflict. The teacher was not trained in working with special needs, and had no real interest in supporting or interacting with him. With a teacher very committed to the traditional Montessori environment, a child like mine upset the apple cart a little too much. We found our son was not only struggling, he was being ignored.
We were aware of what was going on, since we had provided our child with a one-on-one aide through his autism clinic. The aide would frequently communicate to us what was really going on for him. The aide didn’t understand Montessori philosophy, but the source of our frustration came from the fact that our son wasn’t getting much attention or instruction from the teacher at all.
We expressed our concerns to the director, anticipating that she would hear us. Not only were we the parents of one of her students, I considered her a personal contact, given my background. She responded that she would investigate and make sure that he was treated well. But our concern wasn’t just that he was being shunned, we hoped he could thrive in a place like this.
The final straw came when we learned something that absolutely destroyed us: the teacher was actually telling kids to not interact with our son on the playground, presumably because his behaviors didn’t fit what was considered “typical” behavior. The irony in all of this is that Montessori was originally created for the physically and mentally handicapped in the slums of Rome at the turn of the twentieth century. One hundred years later, my son is still somehow a victim.
While this experience did not necessarily equate with us being told we were not capable of making a decision for our son’s education, the experience carried the energy of being put in our place. I thought I was an expert in making this decision for my son, having a good understanding of the school and the philosophy; my wife also has a great mind for education. Even with how much we loved the setting, we still weren’t good enough. We weren’t good enough to make the right call for our child. Though we never confronted the teacher, she gave us the message of not being good enough through our son’s time there.
We made the decision at the end of the school year to transition him to a preschool program run by a nearby special education district. Our son has had a wonderful school career since then. He entered the life skills program at his current school in Kindergarten, and continues in the program in this his fifth grade year.
But we have never forgotten that time when we felt undermined, as parents who couldn’t advocate for their child. This is essentially a lie from the pit of hell. We are more than just two people who don’t know what’s appropriate for our son’s classroom. We are two highly qualified and educated people who are our son’s first and best teachers.
You Are More Than Just A Parent
My hope in sharing this experience with you is that you will remember that you are an incredible parent. Regardless of the challenging situation or the people involved, you can enter into those events and conversations with that knowledge. I also hope you will remember that you may never have all of the information or experience you think you need in a given situation, but that doesn’t mean you are not an expert. You are, in fact, quite the expert on your child. When you face the challenges from educators and others with degrees, certifications, or other credentials, remember that you are more than just a parent, you are everything to your child.
Sarah Broady and I are interested in keeping this conversation going with you long term, as we are hoping to continue presenting on this topic and possibly turning this into a larger study or even a book someday. Your stories will shape this conversation. I encourage you to reach out to either of us through Key Ministry or our personal blog pages and websites, and tell us your stories, of times when you felt somehow less than essential in your child’s life. We believe that special needs parents are not just parents, we are capable of making the best choices for our child’s education, medical needs and supports in our churches. We are simply more than enough.
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