As any parent of school-age children knows, schools can be difficult to deal with, and just as is true of parents, some are better than others. Some might have a very good reputation with parents of “normal” children – that is, your average, run-of-the-mill kid without any major medical problems. It’s when they’re forced to deal with the out of the ordinary that you find out just how well-deserved that reputation is. This is true in my own case, as I learned when enrolling my 7-year-old, who suffers from Gaucher Disease, in his new school after we moved. You’d have thought the world had ended from their reaction.
So I can sympathize with the parents of 5-year-old LaKay Roberts, in Houston, who has been told by her school that despite the fact that she has been using a walker for her cerebral palsy for the past three years, she would no longer be allowed to do so. That’s what the district’s special education director, Gary Lemley, said. In the category of no rhyme or reason, cases like this stand out. Some of the decisions my son’s school made were just as nonsensical. This is how the exchange went between LaKay’s mother, Kristi Roberts and Lemley:
Kristi: “Why can’t she use a walker?”
Lemley: “We don’t feel like it’s safe any longer.” [LaKay had fallen in the parking lot when her walker collapsed, while she was with her mom.]
Kristi: “How many kids fall down at recess? Do you make them take their shoes off and buy new ones?”
Lemley: “No, ma’am.”
Lemley: “They’re not using walkers.”
Believe me; I had many WTF moments in my own discussions with school personnel regarding my son’s situation. I’m not entirely surprised by how this conversation went. One thing stands out: neither parents nor children should have to go through this. It is painful for the parents and dehumanizing for the children, and we as parents should not need special advocates to obtain equal rights to education for our children.
Most people are at least familiar with cerebral palsy, which makes the school’s behavior all the more shocking. Unsurprisingly, my son’s school knew nothing about Gaucher Disease. Who has? When he was diagnosed six years ago there were only about 2500 people on the entire registry in this country. It’s a rare blood storage disorder and I couldn’t blame them for their ignorance. It was how they reacted when they found out that created problems for everybody. Not to put too fine a point on it, they panicked. Perhaps we weren’t very good at explaining the problem, or perhaps they only heard – or focused on – parts of what was said. At any rate, they overreacted. They wanted to completely segregate him from the rest of the student body and over the next few weeks proceeded to toss him around like the unwanted step-child.
As I said, my own conversations were as frustrating as that Kristi Roberts experienced. The things I was hearing made no sense. We had an initial meeting with the vice principal (our first point of contact, the principal was out of town, which didn’t help), the school nurse, the special education director and the school counselor as well as my son’s teacher. We discussed his condition. They had questions; I answered them to the best of my ability. It was suggested by the vice principal that perhaps an IEP might become necessary to ensure the resources to accommodate my son. No one objected. . It was my understanding that by the end of the meeting we were on the same page and that things were well in hand. How wrong I was.
This was terrible for my son, of course, as you can imagine. Here he is, a new student, strange city, no friends, and they deprive him of every opportunity to get comfortable. They banned him from recess – the only part of the school day that really allows socializing, and not only that, but banned him from music class as well, for fear that when he jumped up and down to dance he would be killed. I stayed with him in school that first day. I will never forget the look in the vice principal’s eyes when he asked me how it went and I told him how much Devin enjoyed music class. His eyes went wide; you would have thought I’d told him my son had enjoyed doing a knife dance while guzzling Vodka. Over my protests, that was the last music class he had for awhile.
I argued to no avail. I tried to explain to them that jumping up and down wasn’t going to kill him. I can understand they were worried about lawsuits and that they genuinely cared about his health even and did not want to be responsible for him being hurt or killed, but the situation was not as serious as they made it seem. When I pictured my son sitting there alone in the classroom while everyone else went outside to play, it made me want to weep. As I found out, he spent his recesses in tears, not understanding why he was being singled out like this.
In desperation I had my son’s pediatric geneticist write a letter to the school trying to define the parameters of acceptable activities – obviously, extreme rough-housing didn’t apply to music class, I thought! How wrong I was, at least in the school’s worried eyes. I finally sought the intervention of the pharmaceutical company, Genzyme, that produces the enzyme, Cerezyme, that his body requires to stay in the land of the living. People are used to hearing awful things about pharmaceutical companies but I can tell you they do not apply to Genzyme, whose case managers have always been my son’s best advocates. They have gone to bat for us again and again with doctors, insurance companies – you name it – and they did so again with his school. Their senior patient education liaison came out to the school and did an in-service, complete with slideshow and literature, to educate the teachers, administrators and school nurse – even the school janitor.
After what ended up being several weeks, many discussions, and two letters from the geneticist, this was the turning point – they finally understood that he could live a largely normal life at school. It is still sad to think he has to go outside for recess on his own under the supervision of a teacher but at least he is out of doors and from the sounds of it, some children do at least speak to him or play with him out there from time to time. And he is in music class now and loving it. It was very difficult and I know any further moves are likely to bring a repeat of this process – or its opposite as we experienced in his first school – complete apathy on the part of school officials. I’m not certain even now which bothered me more. Why there can’t be a sane middle ground is something I don’t understand, but from LaKay’s situation and others I’ve read about over the years, you find yourself why some of these people went into education in the first place, if, as seems to be the case, they despise children so much.
Obviously, not everybody will enjoy the advocacy we have with Genzyme; not everybody will have the money to sue a school. I don’t want to pass judgment on LaKay’s school because it is in Texas – that is too easy a joke and as I try to point out here the problem is not a regional one. People in education are just that – people – as flawed as the rest of us. Unfortunately, when those flaws affect a child like my son – or LaKay – the harm is magnified. These people are in positions of responsibility and can affect so many more children than an individual parent. It is to be hoped that as communities, states, and as a country, we can begin to put more money into education and attract better teachers and better administrators. Sadly, this runs counter to Republican goals, and even if the Republicans lose control of the budget, we still need our economy to rebound (which likely it will under that scenario).
For now, all we can do is feel a shared outrage over LaKay’s treatment and hope that something can be done when enough of us express that outrage, and plenty of people seem to be incensed over this. MyFOXHouston reports that Roberts finds the sudden attention overwhelming. “I don’t want this at all. I want Gary Lemley to resign. I’d like an apology, and I would like her to use her walker again and get things changed in the special education department.”
This is all the New Caney Independent School District has had to say on the matter:
New Caney ISD’s focus is and always will be to meet the needs of our students and to protect them. However, we cannot comment on any case involving confidential student information. There are strict laws protecting student privacy, beginning at the federal level with FERPA (Family Educational Rights and Privacy Act) and reinforced by Texas law and NCISD policy. We believe these laws are in place for a reason — to protect children from a public discussion regarding their confidential records. While a parent may choose to share information about his or her child, we cannot. We remain committed to respecting the ethical and legal guidelines and laws that protect our students’ right to privacy. To that end, it is important to know that the video and audio recording at issue was not sanctioned or authorized by the District to be released for public dissemination. Furthermore, the District does not agree that the recording at issue here is a complete recounting of the entire underlying confidential discussion and is therefore neither representative nor accurate towards explaining the District’s ongoing efforts to serve its students.
The school’s treatment of LaKay Roberts is unacceptable and we must make that clear to Kings Manor Elementary School in Kingwood, near Houston, to the New Caney Independent School District, and to Gary Lemley and people like him that there are jobs better suited to him: like flipping burgers and mopping floors, a job where he is unlikely to be able to ruin a child’s life.
You can contact the New Caney Independent School District to let them know how you feel.