Gifted Homeschoolers Forum

Italy? Holland? The bar scene in Star Wars? An unknown land?
All I really want to know is which path to take!

By Anna Otto

I have heard reference to the “Holland” article before. In fact, an acquaintance, a mother of three including a child with autism and Smith-Lemli-Opitz (a rare genetic syndrome), even references it in a compelling blog that she writes.. It was just recently, however, that I actually read the piece. And, in the same sitting, I read the article The Holland Response. As I process both articles, I find that both—and neither—of them speak to me. How can this be? Well, in my experience I split my time between Italy, Holland, the bar in Star Wars, and another unknown land. For me, the greatest frustration is not necessarily the land in which I find myself, but the lack of resources (e.g., maps, guide books, or guides) to help me pick a path forward to a successful future for my son.

In the articles, Italy is used as an analogy for the typical parenting experience; the one that is described in the parenting books and that is regularly referred to by those parents we know with “typical” kids. It is an idealized location. It is the times when our kids and our experiences with our kids are expected and enjoyable. Luckily, I get to spend quite a bit of time in Italy. My “special” son actually spends a great part of his life being quite “typical.” We get to enjoy many of the experiences that I expected us to share and that I see those around us sharing. We go to the park, we go to the movies, we go on field trips to exciting places, we visit with family, we visit with friends. We get to enjoy simple pleasures like a popsicle on a hot day, and bigger things like a family vacation. We take joy in the things he has learned—both in school and in life. We feel pride when he masters a subject and receives teacher, adult, or peer praise.

Holland, in the articles, is the place to which we are diverted when we have an exceptional child. Unlike Italy, we have not been prepared ahead of time for our journey to Holland; we come to the land with the wrong wardrobe, the wrong language, and the wrong expectations. Holland is still a recognizable and wonderful place, however, once we get over the disappointment of not being in Italy. Now, Holland is not a utopia; it has its joys and its disappointments. Still, they are different joys and disappointments than would be expected in Italy.

Holland is the times when my heart swells with pride as my son wows me with his amazing knowledge base. It’s when he knows that that a group of jellyfish is called a smack, even though I didn’t know it and neither did the others in our group. It’s when the other kids at the museum start waiting for his response before they make their own guess, because on all of the other questions he was the one who got the answers right. It’s when he can spot the cougar just off the trail, the one that even the adults in the group initially missed. Holland is also the times, however, when my heart breaks over the challenges that my son must face. It’s when he struggles to read at the same time as his peers. It’s when his written work is posted beside that of his classmates and his is the only one that cannot be deciphered. It’s when he continues to fail the test at school, not because he didn’t study and doesn’t know that material, but because the structure of the test plays on his weaknesses rather than on his strengths. These joys and disappointments, though, are ones that I can work with—ones that I can find guidance in tackling and appreciating.

Then, there are the times when I can relate to the image of living in the bar scene from Star Wars, as suggested by the author of The Holland Response. This is a strange and scary place. It’s a place where you don’t know who are your friends and who are your enemies. It’s a place where people play by different rules and often come prepared to shoot to kill. For me, Star Wars moments come from a variety of sources. They come from the insurance company that denies a request for service, a denial from someone who knows nothing about my child or his actual medical needs. They come from the principal at the school who discounts my concerns about my child’s well-being based on a horrific incident at his prior school. You see, she explains to me, “that would never happen here.” It’s the same principal a year later who sits across the table from me after an incident at school and says she doesn’t understand what happened since they hadn’t seen that behavior the prior year. Did she really forget the extensive conversations (notice the plural) we had about just that very thing? It’s the district “specialist” who doesn’t take the time to understand my son’s placement—one he actually helped to recommend—and after almost an entire school year asks me to explain why we even need services. Isn’t it his job to understand the placements and services required for those students on his case load? It’s my husband when he is unable or unwilling or uninterested in honestly discussing the challenges that we face in raising our special son. It’s those times when I need to don my battle gear or risk having either my son or myself seriously damaged.

Truthfully, if given the choice, I would probably stick with Italy. Yet, I could certainly learn to adjust to Holland. And, if my survival depended on it, I could gear up for battle in the bar in Star Wars. One of the problems I face, though, is that it’s hard to be adequately prepared for all three places simultaneously, and this is what I need to do since I cannot always predict where I will find myself. And, even when I figure out where I am that day, the location often changes without warning. It’s like I’m going along in Italy minding my own business when suddenly I turn the corner and end up in Holland. I manage to recalibrate to Holland and then battle droids show up and take aim. Before I can get my battle gear prepped, another change occurs. Here’s the scariest part, though, now I don’t know where I am. I ask around and find that the others around me don’t seem to know where we are either. This seems odd to me, as those I ask certainly seem like they should have answers for me; they look like they belong in this land, like they have knowledge of this land.

This new land is a land I will call the land of the unknown. It’s a land where there are “experts,” but even the experts don’t have a road map or guide book. It’s a land where you receive multiple answers and diagnoses, yet many of them contradict or cancel out each other. It’s a land where one specialist calls your son “an interesting puzzle” and another specialist tells you she doesn’t understand how your son’s brain is wired. It’s a land where one expert asks why you haven’t started medication, yet another tells you that medication is not recommended at this time. It’s a land where the doctor at the prestigious research university tells you it’s important to get your son back into a traditional classroom while your local doctor says that your current choice to homeschool is a good one. It’s a land where the path forward to a successful future isn’t clearly demarcated; it’s a muddy mucky mess at best. Thankfully, even in this confusing and often scary land, there are some wonderful and skilled people who offer to help find a path forward, even when it means they are learning along the way with us. I admit our time spent in the land of the unknown can be exhausting, but at least we get take breaks—even extended leaves—to more desirable and better understood places like Italy and Holland. In the end, though, like the author of The Holland Response, I just want to find a place where my son belongs, where he will fit, where he will be healthy, and where he will be understood.