When autistic kids don't make progress

Life lessons at San Diego center

Jennifer Carlisle: "Some of them like to play with their feces and urine and make a mess with it, and you have to clean it up."
  • Jennifer Carlisle: "Some of them like to play with their feces and urine and make a mess with it, and you have to clean it up."
  • Image by Sandy Huffaker, Jr.

Dear Reader,

Jennifer Carlisle was a behavioral aide (teacher’s aide) at the San Diego Center for Children School for Autism for 15 months. She started working at the school only a few months after its inception and stuck with her duties until the school’s doors were dosed in August 1997 due to lack of funding.

Anyone who knows anything about autism understands the hardships involved in working with these children. The conditions are loud and chaotic. The children are withdrawn, difficult to reach, and have extremely specialized needs that are often difficult to meet. Working with these children is physically exhausting because of the energy they require from their caregivers. It is frustrating because of the slow progress these children make despite the fully dedicated efforts of their teachers and parents. This work is also mentally draining because of the strength of emotion one feels, as he or she grows attached to these children who will face incredible challenges for the rest of their lives.

I worked with Jennifer at the School for Autism for eight months. During that time I saw her toilet train school-age children, feed children who could not feed themselves, change diapers, and clean up vomit, urine, and feces. I also witnessed her hugs, gentle and sweet conversing with the youngsters, dedicated therapy techniques, and a willingness to do anything to meet their special needs. Despite the high rate of staff turnover amongst her coworkers, Jen did not quit! She never did! Furthermore, before she came to work at this school, she had worked with special needs children at other facilities in San Diego.

After I left my job at the School for Autism, I kept in touch with Jen. When I learned the school would be closing and that staff morale was low, I suggested to Jen that she take a hiatus from the chaos and depression one experiences being near the world of autism. She quickly replied, ”I can't leave this field. This is my life, this is what I do. I love these kids." I will never forget those words or the admiration I felt for her genuine devotion.

If anyone deserves to be recognized as the best, it is Jennifer Carlisle. Her work is dirty, trying, and frustrating, but she does it with as much love and dedication as I have ever seen. She has truly affected the lives of the children she works with and takes so much pride in their slow but meaningful progress. Work in the social services is often thankless in our society. This, however, does not matter to Jen. The rewards she gets may not be monetary, but I have never seen anyone take more joy from a child’s smile, a triumphant attempt to speak, or a tiny hand reaching to her in affection. Please recognize Jennifer Carlisle for dedicating herself to making the lives of those who so desperately need her better.

— Erin Ring

Jennifer Carlisle, 32, did not leave the held of autistic education. The La Mesa resident now home-tutors a nine-year-old autistic boy and works as a teacher’s aide in the special education department of a Chula Vista public school she declined to name. She describes her duties at school. “Right now I’m assigned as a one-on-one aide for a child I worked with at a school that closed recently. I just help him with his routine. He’s developmental disabled. He has no speech, he has some receptive language, which means he understands a little bit, but he has no expressive language, no spoken words. He uses gestures and sounds to communicate. He has some behavioral problems: he throws things, he dumps things, he pushes and shoves other children, not in a malicious way but because he doesn’t know how to interact socially.”

How do you teach a child like him?

“You teach them some spoken words,” answers the soft-spoken Carlisle, “but you mostly use pictures. You can either use actual pictures to communicate or you can use what are called ‘picture communication symbols,’ which are line drawings to help with the communication. They are real simple black-and-white line drawings. For example, part of the time he goes swimming — there’s a pool at the school — and the communication symbol for that is just a stick figure swimming in water. A stick figure at a table might mean work. A swing set and a ball might mean recess and play. There’s a drawing of a toilet for bathroom. ”

In her letter about Carlisle, Erin Ring mentioned loud, chaotic working conditions being part of teaching autistic children. Carlisle, smiles and says, “She’s speaking specifically about the class I worked in with her, but this class that I’m working in now is actually worse than the one we were in. The kids in the class have a combination of disorders — Down’s syndrome, physically disabled children, autistic children. There’s a whole combination of kids in this class. There’s a self abusive child that’s very sensitive to any kind of little sounds in the room. He will bang his head severely at any little sound. He’ll scream and yell and bang his head, which disturbs the other kids with auditory sensitivity. It’s a chain reaction, they all start screaming. Once the one goes, it sets them all off. We don’t want to remove this kid because he wants to leave the room, so to remove him would be reinforcing his behavior. But on the other hand, he also disrupts the other children in the room."

The lack of basic living skills in some of the students makes Carlisle part teacher and part nurse. “Some don’t have feeding skills,” she explains, “so you feed them. They throw food, they spit food, they have very specific likes and dislikes, which vary from child to child. Texture bothers them, so they are very picky eaters. Also, some of them need help with toileting. Not so much the class I’m in now, they are mostly able to use the bathroom except for the two physically disabled children who are in diapers. Some kids I’ve worked with have been in their teens and needed diapers changed. Some of them like to play with their feces and urine and make a mess with it, and you have to clean it up.”

Hard as feeding kids and changing their diapers may be, they are not the hardest aspect of the job to Carlisle. “The worst part of the job,” she says sadly, “is when they don’t make progress. When you’ve worked intensively with a child for so long, and they seem to be progressing and then, for whatever reason, they completely lose all their progress and they are back to day one. That’s very frustrating. There have been many times when I’ve gone home in tears and thought, I can’t do it. I’m not strong enough. It’s too much. But I keep going back.”

The best part of the job?

“The best is when they do make progress,” she answers with a proud smirk. “This child I’m working with now has been back and forth between schools, and the teachers that have seen him in the past see huge improvements that I may not have noticed because I’ve been with him more recently and consistently. They have come to me and said, ‘He is so wonderful. He can sit in a group and pay attention, and he doesn't have to pull things off shelves constantly.’ That’s a really great thing. When they do make small improvements, when they do show an interest in other people and they learn how to play and how to interact with them, when they are more tolerant of different sensations of touch and smell, when you get them to be more tolerant in small increments, and they become more social, that’s rewarding.”

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