Elisse Ghitelman and Jacob
Jacob used to tell people he had been expelled from second grade. He could read by the time he finished kindergarten, but until fourth grade still routinely wrote his “Cs” backwards. “He’d look at the letters and know they were backwards, but it’s a different part of your brain that tells you how to do the task,” explains Jacob’s mother, Elisse Ghitelman. Jacob’s first grade teacher cared for him and tried to accommodate him; his second grade teacher didn’t have the same degree of empathy and creativity.
For a while, Elisse thought that perhaps the problem was that Jacob was an only child and that he was merely having trouble adjusting to a social situation that included peers. When he tried to injure another child in class, however, it was clear that even having an aide in the classroom would not be sufficient.
At 8, Jacob was diagnosed with Asperger’s. He went on a small dose of antidepressant to help him handle his anxiety and frustration, and his parents accepted an outside placement for him at the Manville School in Boston. Manville is a Chapter 766 school, meaning the public school district funds Jacob’s tuition and transportation. Manville’s “therapeutic milieu” approach kept Jacob in the classroom instead of isolating him from other students.
School had been “a place of failure for my son,” Elisse remembers, but over time, “he started to see that the people [at Manville] were on his side, and have enough success that he was willing to push himself some more.” Jacob, of course, had a lot of catching up to do. “If you’ve never physically written anything, it’s harder to put together a cohesive sentence on a page. If you don’t have legs, you don’t worry about how to run. When you get prosthetic legs you don’t necessarily know what to do with them.”
With the attention of the skilled teachers at Manville, Jacob made dramatic progress. He learned to write an essay using a graphic organizer, where the student “maps out” the points he wants to make, drawing circles for each main topic and denoting supporting paragraphs by drawing branches off each circle. A speech pathologist working with him over the course of three or four years helped him master “all the little steps you have to learn: how do you start a conversation, how do you switch a topic, what happens if you get off the topic, and how do you end a conversation and not just walk away.”
School achievements are relatively easy to identify and applaud. Elisse was more astonished when, in 4th grade, Jacob told her that he wanted to learn to snowboard. “He’s had a lot of OT for gross and small motor issues, but he had this idea it was what he wanted to do. I thought to myself, “If he hates it he hates it. He can do it for however long and then quit.”’ She asked friends to identify a good beginner’s snowboarding program, and found one at Cranmore, in the Mt. Washington valley in New Hampshire. It was expensive, but Elisse set up a private lesson so that Jacob could have the instructor’s undivided attention. “He had the time of his life. He did a day and a half or so with at most two kids in a lesson. He told me “I just love this, mom!”’
“Jacob’s not a natural athlete but he fell down and got up and fell down, and got better at it. I think he learned that sometimes a thing is hard but if you keep trying you’ll get better. It gave him a kind of confidence in himself that he may not have gotten otherwise.”
Now, at 13, snowboarding continues to be Jacob’s passion. He snowboards regularly during the winter and hangs out with other kids. Elisse remembers Dania Jekel explaining that hobbies like skiing and snowboarding are often well suited for children with AS, because the activity doesn’t depend on sitting around and talking.
Elisse suggests that other parents whose children have AS remember that developmental delays are just that—delays. “They’re not ready to act the way we’d like them to be,” she says. “You need to be satisfied with progress and not worry about whether your child has reached certain milestones. By age thirty, almost everyone will have the same set of skills. No one will know that your kid got them at age nine instead of at six.”
Elisse also strongly suggests that parents find other adults to teach their children difficult tasks whenever possible. “There are pieces only you work on at home as a parent—things like coming to the table for dinner, taking a shower every day—but someone else can teach him to tie his shoes, which can take hours out of your day. There are parents who make themselves crazy on top of the stress of raising their child and problems with the school and [society’s] general lack of understanding. If you pick your battles, it helps you to maintain your sanity.”
Yolanda and Sarah
Yolanda vividly remembers the moment she fully recognized that her daughter Sarah had problems. The shy kindergartner, who always gravitated to a train set in any toy store or classroom, disappeared one day during recess. Her teacher panicked. Teachers and other students raced around the school yard and then back into the classroom, calling out Sarah’s name, but there was no reply. Finally, they found the little girl safe and sound, hiding under a table. She was playing with a doll, and had simply decided that she didn’t want to answer.
Once the initial concern was eased, Sarah’s teacher was outraged and very upset. Didn’t Sarah understand that everyone had been frightened about her? Didn’t she have any empathy? Why wouldn’t she apologize for what she had put everyone through? The school psychologist got involved but that evaluation was inconclusive. The Kolinski’s took their six year old to Children’s Hospital in Boston. The diagnosis was Asperger’s Syndrome.
In many ways, the Kolinskis were very lucky, her mother says today. Sarah started first grade with an aide, and continued to have at least one extra adult in all of her classes through her junior high years. The Kolinskis didn’t experience many of the bureaucratic obstacles other families with a child who has AS have had to deal with when their children begin to have trouble in school. But lucky doesn’t mean things were easy. By the end of fourth grade, Sarah was acting depressed. A trial of Ritalin didn’t help her concentrate: it just made her more angry and disrupted her sleep. Sarah was taken off the medication and her mom started going to support group meetings at AANE.
“In a way I was in denial. I had a hard time with the diagnosis,” Yolanda says. “My husband read about Asperger’s Syndrome, but I’d start crying and I just couldn’t.” But by 4th grade, it was time for Sarah to be reevaluated. After Dr. Daniel Rosenn confirmed the AS diagnosis, “I started reading,” says Yolanda. “I still feel, guilty, that if I had been educated [earlier] I could have helped her a lot more, could have sat down with a teacher and told her what works for Sarah and what doesn’t. But at first, I was so concerned with protecting Sarah that I didn’t mention her diagnosis to anybody. She had an aide, but the school only had her IEP, not her plan from Children’s. We should have insisted on including those records in her file when they were planning services.”
Today, with appropriate aides in the classroom, Sarah is a 14 year old who wouldn’t think of skipping the half day when her school day is delayed because of snow. Her teachers are impressed that she never, ever misses a day of handing in her homework! She is close to her ten year old brother, who, Yolanda says, has taught his parents a lot about how to be patient with his big sister.
Most amazing to her mom and dad, Sarah has a few friends. She is still quite shy, but with a little nudging from her parents, occasionally enjoys going to the movies with her brother or a friend. She likes the daughter of her aide, a girl close to her own age, and the three of them sometimes go out together.
Sarah spends hours on the computer communicating with her best friend, a girl she met as a toddler, and who goes to a different school. Instant messaging is easier for Sarah than face-to-face meetings, as it is for many teens with AS.
“We feel every year that Sarah makes a leap,” says her mom. “When they are little you ask how is she going to survive? And now we are talking about college and she wants to go. I think she’s on the right track.”
Jane and Daniel
As a young child, Daniel knew everything about garden hoses and sprinkler systems. He knew which neighbors had “back-and-forth” sprinklers for their lawns, and which used the type that went “round-and-round.” Looking back, his mother recalls he had all the signs of Asperger’s Syndrome: a singsong intonation to his voice, problems connecting with other children, talking only about what he wanted to talk about. He knew how to run the family’s phone answering machine, but not how to pretend to be a fireman or a policeman. Daniel knew how to do real things, but he didn’t know how to play.
At six, he fell ill with strep throat and then, mysteriously, developed motor tics. Daniel’s parents took him to Washington, D.C. where the National Institutes of Health were conducting a research project known as PANDAS: Pediatric Autoimmune Neuropsychological Disorder Associated with Strep. A keen neuropsychologist suggested that Daniel might have Asperger’s and at age 8, he received a formal diagnosis.
At the time, Daniel was enrolled in a private Jewish day school. Half of the day was spent in Jewish subjects and Hebrew, the rest was devoted to secular topics including math, reading and history. “He had a teacher who thought I should put him in a public school where he would have [special education] services, but he’s really obsessed with Jewish religious stuff, so I couldn’t see taking him out of the school,” Jane remembers.
The school had never worked with an inclusion aide, and it was not clear if an aide would enable Daniel to stay at the school. In addition, Daniel’s parents would have to find an aide and pay the aide’s salary. After a great deal of discussion, and with the full support of the school’s administration, they decided to give this approach a try.
Daniel was lucky. For his first aide, Jane found Chaya, a lovely young graduate student who was majoring in special education. Chaya not only loved Daniel but was also “very politically astute.” Although Daniel’s teacher for that year initially resisted having another adult in the classroom, she found over time however that the aide benefited the entire class from having an extra helper available. The aide freed up the teacher to focus on the rest of the class when Daniel was having a hard time; when Daniel did not need her immediate help, Chaya was also able to serve as an extra helper for his classmates.
Today Daniel is 15 and in tenth grade. His current aide, Jonathan, has been with him for four years and now helps Daniel about ten hours a week. Jonathan, who is in his 20’s, is old enough to be mature but young enough to be “cool and fun.” Jonathan has even taught Daniel socially appropriate ways to challenge his natural teen rebelliousness. Just the other day Jane suggested that he eat more neatly at the table and Daniel’s response was “Oh, I’ll consider that request.”
When Daniel moved to a private Jewish high school, his mom met with the teachers the spring before he started, explaining Daniel’s needs and how to work with an aide in the classroom. She spoke to the teachers and administrators again the week before he started school, and again a couple of weeks into the first semester, so that she could answer any questions they might have and strategize around what was happening in the classroom. Teachers very much appreciated the AANE literature and newspaper articles Jane shared with them.
“Daniel is a lovable kid, sweet and polite, and they could see his struggles,” Jane explains. “He used to get so upset about little changes in his routine. If class was supposed to end at noon and it ended at 12:03 he got hysterical. That doesn’t happen anymore.
“We still have more progress to make,” Jane says, but she and Daniel have certainly come a long way. “I do remember feeling very overwhelmed when Daniel was younger. He had so many different issues that I didn’t know whether to start with OT, a social skills group, or a behaviorist. Dania and AANE have been an amazing resource for me. Since Daniel was in a private school, I didn’t have the guidance of a special education department, and Dania helped me set priorities. She gave me terrific guidance and advice. The other parents in Dania’s support group was really great too—it was really reassuring to talk with parents who were struggling with similar issues. I was also fortunate to have some great personal friends who supported me through those years.
“Now that Daniel is older, I see how much progress he has made, how much he has learned and matured. Now we can concentrate on refining his social skills. I no longer feel so overwhelmed, but whenever I have a major decision to make, I call AANE, confident that Dania will give me great suggestions and guidance.
“I remember thinking: this is my most important job in my life, to bring up my child to be as good a person as he can be, a person that other people like to be around, so he can make his way in life. It was my mission and if I didn’t do it, no one else was going to do it.”