Features
Features
Photo courtesy of Katie LaPointeThis is one of Katie LaPointe's favorite photos of herself. The senior spoke candidly with Gargoyle editor Shivani Khanna about her experiences with selective mutism. UNI KIDS. The phrase is loaded with various connotations about who they are. Some of these deal with their messiness, others have to do with their social awkwardness, but almost all will include something about their undoubted and remarkable intelligence.
There is no question that Uni students are gifted and smart individuals, but what many may not realize is that Uni students, who are incredibly bright in the classroom, are just as prone to learning disorders as other students.
"Gifted kids are not strangers to problems," said Assistant Principal Sue Kovacs. "They are not perfect and they have learning and psychological problems like everyone else."
This is story a about a fellow senior who wants to make her learning disability known to others so that they become knowledgeable about it. We hope that it is clearly understood by all that giftedness and learning disabilities are in no way mutually exclusive.
"I have selective mutism," said Katie LaPointe at the start of our interview. She also told me that a few years ago even saying that much to a student she didn’t know very well would have been a handful. But now, she's more than content to swap stories with me and answer my questions without any hesitation.
What is Selective Mutism?
"Selective mutism is an anxiety disorder," LaPointe said. "In some situations, I can't talk and I physically cannot move."
Biology teacher David Stone has had a lot of interaction with LaPointe throughout her years at Uni. Stone has been witness to her transformation, from a freshman with selective mutism so severe that looking at adults was hard enough, let alone talking to them, to an outspoken senior who is now in the recovery process.
Stone likened selective mutism to public speaking with little or no preparation.
"Anxiety is manifested as a lack of comfort in speaking," said Stone. "It is comparable, for those of us who don't have it, to public speaking to large groups with no preparation. Most people would be horrified by that. On a more personal level, the rest of us deal fine with spontaneous conversations, but people with selective mutism feel that same anxiety we would in large speaking situations in several situations every day."
He also noted that there is a continued spectrum of anxiety that exists. On the one hand are those with selective mutism and other anxiety disorders. On the other are those who are comfortable speaking in public without any preparation. Most of us would say that we lie somewhere in between.
For LaPointe, these situations generally occur when she has to communicate with large groups of people or when she has to talk to an adult.
"Adults are the hardest," explained LaPointe. "I can talk to teachers when it's not about school, but school has so much anxiety associated with it, that when it's about school it becomes difficult."
LaPointe recalled a time when she was sitting in the counseling office and guidance counselor Sam Smith was asking questions about history class. Eventually LaPointe became too overwhelmed with the situation and started crying. Looking back she feels that this was due to her unfamiliarity with Smith and also because responding to his questions about school became too difficult to handle.
Mimi and Michael LaPointe, Katie's parents, put it nicely when they explained that none of it is about talking and it’s all about communication.
"Katie was the school spelling bee champion in fourth grade, and she was entirely fine spelling out words in front of a large audience," said Mrs. LaPointe. "But when Mr. Crames [Joel Crames, Katie's fourth-grade teacher and the spelling bee moderator] asked her to say her name and say that she was from Garden Hills she couldn't."
How Was It Diagnosed?
LaPointe was diagnosed with selective mutism her freshman year at Uni, when the condition started surfacing noticeably in a variety of ways. Coming from Franklin Middle School, a large school in Champaign notorious for having unruly kids, her condition was mistaken not only for shyness, but she was also rewarded for good behavior because she was so quiet.
"At Franklin, and mostly my whole life, I was praised for not talking because all of the other kids were out of control," LaPointe reminisced.
When she got to Uni, however, it was a different story. The small class sizes and the intimate student-teacher relationships that many of us form taxed LaPointe in different ways.
"At Uni, there were less people and teachers expect you to talk more," said LaPointe. "Basically, I just didn't because I couldn't. They were pushing for me to talk, and I just hadn't experienced that before."
The change in expectations and the climate of the school and how that affected LaPointe caused many to worry about LaPointe, including Kovacs, Uni's assistant principal.
"Freshman year the learning problems became more noticeable; we knew that she had ADD and ADHD mildly, which isn’t unusual for Uni students to have," said Kovacs. "But as the school started working with her, we started noticing that she wasn't talking as much as the other students and that she had retreated within herself."
LaPointe began seeing Dr. John Lavigne at Northwestern University, one of just a few doctors in the Midwest who specialize in selective mutism. Lavigne has helped LaPointe immensely and she now sees him about every three weeks.
Many children are diagnosed with selective mutism from a very early age, when they enter preschool and find themselves surrounded by adults and other children whom they do not know.
LaPointe still remembers the first time she became so anxious that she wasn't able to speak.
"We had just come back from a trip to Florida and I really wanted to tell my teacher about it," she said. "I ran up to some lady who I thought was her, and when she turned around I realized it wasn't my teacher. I just couldn't say anything, so I just ran away."
Looking back, Mrs. LaPointe can pick out some of the early indicators of her daughter's selective mutism that she missed.
"We wouldn't have noticed anything [had it not been for Uni], but there were early indicators like she wouldn't talk to adults, but it also sort of looked like she was shy," said Mrs. LaPointe. "She wouldn't talk to the neighbors, and they would say, 'She just stares at us, like she's sucking your brain out.' It was a very 'deer in the headlights' type of thing."
The idea that selective mutism is just a form of shyness is a common misconception. And while shyness is closely related, selective mutism is different because it describes an inability to function at all in certain situations where there is much anxiety.
"A kid who is shy is anxious, but a kid with selective mutism, it's like they're paralyzed," said Mrs. LaPointe. "Their vocal chords behave like they're actually paralyzed."
As Dr. Elisa Shipon-Blum of the Selective Mutism Anxiety Research & Treatment Center in Jenkintown, Pa., told ABC News: "The difference between shyness and selective mutism is ability to function. Shy children function. Children with selective mutism have a difficulty socially, emotionally, academically."
For LaPointe, ordering things for herself in restaurants was a large hurdle that she had to overcome, because she found it so hard to speak to waiters and servers.
"I remember my babysitter used to take me to Baskin-Robbins, and I was supposed to order my own ice cream and if I didn't, I couldn't get any," recalled LaPointe. "So I would be crying and ordering at the same time because it was so hard."
There is also a difference between shyness and selective mutism in that kids with selective mutism would be considered completely normal around their parents or others whom they know very well.
"Katie is loud and talkative at home just like other kids, but interaction with adults or assessment interaction becomes hard," said Mr. LaPointe.
The difference becomes even more apparent when one gets to see how children with selective mutism function around their parents and then how they are around those who they do not know.
"We went to the Selective Mutism Conference, and there everyone went out to a restaurant," said Mrs. LaPointe. "It was banquet style so you could really tell who had selective mutism and who was a sibling. I mean while we were sitting down every family was loud and talkative, but as soon as we got into line, it was so quiet. Some kids were hiding behind their parents, and the difference was just bizarre."
How Selective Mutism Has Affected Katie at School
Stone, who teaches freshman biology, was also concerned about LaPointe and took many proactive measures to ensure her success in his class.
"Her performance in first-year Bio was not terrible, but there were a few instances," said Stone.
Essentially, Stone made certain to always have open and constant communication between himself, LaPointe, and her parents.
"We were dealing with organizational issues," continued Stone. "I had weekly conferences with mom and dad, keeping everyone appraised as to what current assignments are, what is turned in, what is not turned in, and what's coming up."
Planning ahead as far as possible was a method that Stone favored, and it seemed to work relatively well. With these measures, there was no need for Stone to modify from the standard means of evaluation and expectation while dealing with LaPointe’s situation. In addition, although extra testing time was available for LaPointe, she never needed it.
Another thing that becomes an issue when dealing with learning disabilities is the medications and the medication changes resulting from behavioral or performance changes.
"Between her parents, her therapist [Dr. Lavigne], and myself we spent a lot of time looking at what the best medication menu was and what the best amount of each medication was," said Stone. "This is pretty hard since people respond differently to different chemicals, particularly if you have a combination of different meds."
The impact of medication, particularly on adolescents, varies, and it becomes important to balance between too much and too little. With ADD, for example, the problem isn't so much paying attention but rather those with ADD have a difficulty filtering and focusing on one thing. Thus, ADD medications are substances used to help people filter, and most are stimulants. These can cause an individual to have a loss of appetite, an increase in anxiety, and they can become more irritable.
One can also medicate too much with ADD medication to the point where it becomes difficult to unfocus. When this happens, patients often crash when the level of stimulants decreases. Sleep needs to be balanced with staying focused to do work as well, so sometimes sleep problems also occur as a result of overmedication.
LaPointe has been on several different medications throughout her life and has had interesting experiences with dosages.
"I was on Wellbutrin, and I went crazy," she recalled. "Not really, actually, but I snapped on Kovacs and [art teacher Lisa] Evans, and I cried a lot and was frustrated. They ended up taking me off of it."
A third issue to deal with became how other students responded to LaPointe and her condition. It was not until recently that LaPointe felt comfortable talking about selective mutism, so getting others to understand why she didn't participate in certain activities was a challenge.
"In classes it would just look like I wouldn't want to do something or respond to a question, but I really did want to," said LaPointe. "So I'd get some comments from other people being like, 'Well if she doesn't have to, then why do we?' and at first I just got really annoyed that people didn't understand, but eventually I realized that it's not their fault that they don't know."
Teenagers can be cruel, especially when confronted with a situation they are unfamiliar with and unsure how to handle. LaPointe has been fairly good about realizing that many people just don't know about selective mutism and that their response to her should not be taken personally.
"People obviously say stuff about me, and they have for years," she said. "But now, it's just like I don't care anymore."
The Recovery Process
Because selective mutism is an anxiety disorder, the recovery process begins by learning how to confront your anxieties. The goal is to be able to do the things that you want to do without succumbing to your anxiety about them. In addition to therapy with Dr. Lavigne, LaPointe did many exercises to help her get used to her anxiety.
"I went to restaurants and began by ordering things by myself that I would normally get," said LaPointe. "I then moved onto ordering things that I normally wouldn't get. Then I would rate it on a scale of how scary it was."
Learning how to be self-sufficient and function on her own was a large part of the recovery process.
"We would rate various activities — activities that you and I might find inconsequential but for Katie they were huge deals — on a scale of one to five," said Mrs. LaPointe. "If it was less than three, then that meant she should be able to do it own her own. If it was more than three, then we would break it down and figure out how to do each part of it separately and one at a time."
LaPointe has made many large steps since she first began therapy. For her parents, seeing Katie get her driver's license was a huge deal, because it meant not only talking to the driving instructor, a stranger, but also taking a test. LaPointe did just fine and received her license.
She was also given a card to carry with her that explained her selective mutism in case she got pulled over by a police officer. This way, the officer would understand why LaPointe was not talking.
LaPointe’s favorite accomplishment since she started the recovery process was when she was able to read a graduation speech for her mom's preschool class.
"It sounds small, it was just a bunch of preschool kids and their parents, people who I've known probably my whole life because they work with my mom, but it was still difficult," she said. "I remember sitting in the corner beforehand, crying because I didn't think I could do it. I was thinking, 'Wow, why can't I do this? It's f*****g preschoolers!' "
LaPointe’s mom stood up there with her and helped her get through it, and LaPointe was able to read the speech.
Another part of the recovery process is learning how to develop a filter. Now that LaPointe can talk, she never wants to stop. And, while this may be great in some situations, at school and in class it can present itself as a problem.
"In Bug Bio, Mr. Stone would have to tell me to stop talking at least once every day," she said. "It was cool, though, because he understood and he wasn’t ever really mad. Also, one time in Spanish, I accidentally got two people moved to another table because I was talking too much."
Stone feels that learning when it is appropriate to talk and when it isn't is a skill that most of us develop at an early age; we also learn how to talk and work at the same time. For LaPointe, this didn't happen, and so being in class and working on collecting-trip projects was difficult.
"Other people would talk and work on their collection at the same time," explained Stone. "But Katie had a difficult time staying in a work sphere when more casual conversation was occurring. We managed to figure out a system where she would come in during her free periods to work on her collection, and I think that worked just fine."
Despite many tough situations, LaPointe is well on her way to becoming a self-sufficient adult who can speak up for herself and self-advocate for her wants. She has come to accept that certain things might be hard for her, but she is willing to work through that to get what she wants.
"I'm always going to be more anxious in certain situations than other people might be," said LaPointe. "But that's OK, and I accept that."
Comments
kudos
Shivani,
What a wonderful article, one that educates all of us, and not simply about selective mutism. How often do we all snap to a judgment without knowing all the elements? This article should give us all pause the next time we are faced with someone acting in a way we don't think is 'normal." Thanks for bringing this to our attention.
And huge kudos to Katie for working so hard to overcome her anxieties and having the courage to help us all understand.
This is first rate journalism.
S. Rayburn
WOW!!
Katie, I commend you on sharing your story and all of the hard work you have done. Shivani, This is an excellent article and really shows the human side of hidden disabilities and the tremendous effort it takes for a person to overcome such issues.
Mr. Rayburn, I want to second all of your comments.
I plan to share the link to this article with other professionals.
Great job!!!
Ann
Thanks
Thank you Mr. Rayburn and Ann for all of the encouraging comments. It really means alot to me that people took the time to read this article and that they appreciated. I really enjoyed writing this piece and getting to know Katie while doing it. She is truly a remarkable individual and I'm glad that I was help enlighten others about issues like this.
Shivani
thank you
thanks to all of you. especially shivani for writing this article so well. i'm glad you find me to be a remarkable individual :P now i must verify that i am human by typing in a code to post this comment.
Excellent article
Katie, we are so proud of you. I'm sorry I didn't read this before I saw you earlier this month. I would never had known you had selective mutism when we had dinner.
Shivani, outstanding writing. You held our attention throughout the entire article.
ON TV
Wow! How great to see the show on Selective Mutism and Katie on Channel 3 yesterday--go to "your turn" and you can find it. You should be feeling pretty proud of yourself for all of your progress, Katie. And, Shivanni, I am sure that Channel 3 did the story because of your excellent article.
Best to both of you outstanding Uni grads!!!
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