It was 11:30 in the morning. I glanced outside and saw our neighbor’s Christmas tree lights blinking through my blurry, rain dropped window. It was cold, and felt like the perfect weather for sitting in front of the fireplace with a good book. When I looked back toward the living room, though, chores were calling: piles of laundry were laid out on the sofa, organized into whites and brights. My daughter Lyla was in school, which gave me precious time to either get the laundry done or research new schools for her. As usual, I thought, looking at the crumpled piles of clothes, the latter took precedence, and I’d been on the telephone this morning with Lyla’s new psychologist, Nicole.
A friend I met at a local support group for parents of children with special needs recommended Nicole to me, as she specialized in working with people who have autism spectrum disorder (ASD) and had knowledge and experience in self-injurious behavior. She had a private practice and also consulted for a number of schools, including a nearby school for children with autism and other neurodevelopmental disorders. Most of Lyla’s recent problems had been occurring at her public school, which is why I was considering moving her to a new educational setting.
“Since Lyla started at the local public school in September of this year, her self-injurious behavior has gotten so much worse,” I explained to Nicole. “She’s bruised almost all of the time. When she heals from one incident, the yellow of those bruises becomes a deep blue again. It’s been five months since school started and it seems pretty constant. Her chin is almost always swollen, she looks exhausted, and I don’t know what to do anymore. I’m so worried about her, and I can’t keep picking her up at school every time she hurts herself. I know it sounds awful, but I can’t. That’s not the answer. I could lose my job.”
“Can you identify a pattern or a common trigger that happens right before the behavior?” Nicole asked.
“I can’t, and I don’t think the school has either, but one thing I do know is that the staff at her school don’t have the training or experience to help her. They’ve revised her behavior plan twice already and are trying to be very consistent in how they approach the self-injurious behavior, which is great. They say they think she either wants attention or is trying to avoid things. But her teacher calls me at least twice a week and tells me Lyla is banging her head and chin against the walls or desks, and biting the back of her hand. I feel like she’s not safe there anymore. I feel like I have failed. I know it’s not the school’s fault—and that they’re doing all they can with what they know. When she first started at the school in the fall, she did well for a few weeks. Then all hell broke loose.”
Just as Nicole began giving me feedback, the other line rang. I switched over when I saw on caller ID that it was Lyla’s school.
“Hi, Maggie. It’s Ms. Brittany from Fairview Elementary School. How are you today?”
“I’m okay, thanks. Is Lyla okay?”
“She’s okay, but we were hoping you could come and take Lyla home today. I’m sorry. She’s been having a difficult time, three people called in sick, and I’m very short-staffed. Lyla is pretty agitated right now and doing a lot of banging her head and hitting her chin today.”
“I’m on my way. Can you please just tell her Mom will be there soon?”
“Of course we will. Sorry about the call, Maggie,” Ms. Brittany said.
“No, no… it’s fine. Thanks for calling. See you in a few.”
I switched back over to Nicole to let her know that I had to go and Lyla needed me.
“Okay,” Nicole said with warmth. “I’m here until five o’clock today and am open this afternoon from two to three if you want to talk. May I quickly say that I would strongly suggest taking a tour of New Start Academy? That’s the school we talked about a few weeks ago when we first met. They have a great special education team, specialize in autism spectrum disorders, and have a full-time occupational therapist with a lot of experience in self-injurious behavior. Obviously I have knowledge of the school as I have consulted with them about some of their higher-skilled kids, but I think you will find that Lyla might really get the help she needs. It’s a special place. They can probably help you even more than I can at this point as it sounds like these problems are more school-based, but we can talk more about that later too.”
“Thanks so much, Nicole. I’ll call you when I’m home to talk more about the other school.”
Scrambling to get my keys from the hutch in the kitchen, I noticed the eggs, milk, and vegetables on the counter that I hadn’t yet unloaded from my trip to the grocery store hours earlier. I rushed to throw them in the fridge, and then headed out the door in my slippers, which immediately got soaked in the rain. An inner “Grrr!!!” echoed in my mind.
It was a quick drive to Lyla’s school. The proximity to the house was one of the reasons I chose to send her to the local public school, and I had wanted to try it before trying another public school or having to dip into my savings to pay for a private school. While the local public school was known to have a solid special education program, that didn’t always mean it was the right fit for all children with disabilities. The school was known for having very good special education services for students with specific learning disabilities, but Lyla was lower-skilled and her needs were fairly extreme. Every school and every child is different, and the specific needs and services don’t always match. A compatibility between a child’s need and the school’s possible levels of support is essential for the child’s success.
I walked into the school office. The volunteer parent behind the desk was assisting someone else, which gave me time to view the seemingly ancient card catalogs of emergency contact lists, the Xerox machine that seemed to be overheating while spewing out notices to parents, and the rotary phones from 1983, stacked four high next to an old metal filing cabinet.
“Hi there. May I help you?” It was a mom I recognized. Her hair was in a perfect ponytail and her shirt was neatly pressed. Her rain boots even matched her stylish outfit. Ugh… I couldn’t remember if I had even looked in the mirror today. I became acutely aware that I was wearing my house slippers. My face reddened. I wanted to hide my feet.
“Hi. Ms. Brittany called me. I’m Lyla Armstrong’s mother and I’m here to pick up my daughter.”
“Yes, of course. Please sign in and let me get you a visitor pass. My name is Desiree. Nasty weather out there, isn’t it?” she said and smiled.
The last thing I wanted to do was make small talk, but I forced a smile and said, “Hi, I’m Maggie. Nice to meet you. Thanks for the pass. I know the room number.”
I kept my eyes down and grabbed the pass, practically running away from the office, nearly losing a slipper on the way.
I headed to my daughter, my angel, her head, chin, forearms with new scars, her body being victimized by itself. Although Lyla had always had an incredibly high pain threshold, I could feel her struggle and discomfort in my heart as if it was my own. In the past she had also had skin infections from self-injurious behavior, and once shut her finger in the car door seemingly on purpose. My heart ached for her, but as much as I loved her, I couldn’t stop her. I didn’t know how. I was frustrated, felt like a failure, and was becoming angrier, it seemed, at “life.”
“Hi, Ms. Brittany,” I said, as I walked over to Lyla. My daughter glanced up at me with her sweet brown eyes, her hair loosely falling onto her cheekbone. She looked so small and fragile.
I knelt down in front of her and gently pushed her hair off of her face. I saw that her chin was horribly bruised. Tears were in her eyes. Tears welled up in my eyes. These tears, which I usually bottle up, tell the story of Lyla’s difficulties—not just the events of today—but all of it: being alone, a single parent of a child with special needs, the doctors, evaluations, diagnoses, teachers, psychiatrists and medication, therapists, IEP teams, school administrators, and of course insurance, denials, and co-pays. My sweet Lyla, my only child, moving through countless medical buildings and professionals’ offices with their noise machines and talcum powder-scented oils plugged into power outlets. My tears started to burn, and I wasn’t sure what exactly I was feeling at that moment. Then I remembered my father telling me years ago before he passed away… “there’s a fine line between sadness and anger, Maggie, and it can be hard to figure out which is what.” I had known that Lyla was different since she was born. In hindsight, I think I knew the moment she was born. I had tried to avoid having her labeled for a few years so that she could be with typically developing kids and have as normal a childhood as possible. However, in order to get services, and funding for those services, I had to have her tested. I needed a diagnosis on paper. Since she was formally diagnosed three years ago with autism spectrum disorder, it seemed she had gone directly from one office to another, and nothing seemed to work well or for long.
Her young teacher, Ms. Phillips, while kind, dedicated, and well-intentioned, was at a loss. Her face was really flushed and sweaty. The three of us were near the hallway while another teacher was with the rest of the kids. “When things got really bad and Lyla wasn’t calming down, we used the physical intervention that is included in her IEP so that we could protect her from harming herself. It didn’t seem to be effective. She didn’t seem to understand that we were holding her for her own good and just got more upset.”
I knew they were doing their best, but my gut was telling me that this wasn’t going to improve any time soon and it was time to seriously evaluate whether a major change was in order. “I’ll take her home now. She can get some rest and tomorrow is a new day.”
“Okay,” Ms. Brittany said, with obvious relief in her tone.
“Come with Mommy, sweetheart. We’re going to go home and have lunch, then stay home for the rest of the day.”
Lyla stood up, remaining motionless, waiting for me to pack her lunch bag in her backpack.
Lyla left the school building easily like she always did. The rain picked up, so we walked as quickly as we could to the car, huddled under an umbrella. As soon as we were back home and I’d prepared lunch for Lyla, I called Nicole back at 2:00. Luckily, she picked up right away.
“I’m feeling more and more every day that this school is not the right fit for Lyla. They are trying really hard but it’s just not working. It’s so hard to watch and I feel helpless,” I cried, all of the emotion coming out of me.
Nicole listened and I eventually calmed down and became more centered.
“I think New Start has a great occupational therapist and special education team who follow evidence-based methods for Autism Spectrum Disorders and self-injurious behavior,” she said. “I believe this could really help Lyla. They would work to find the underlying cause or reason for the behavior. While this involves some data collection and ‘detective work’ I’m confident it would help everyone get a better understanding of what is contributing to the self-injurious behavior and how we might provide behavioral supports, teach replacement behaviors, and better tailor our interactions and the environment to meet her needs. Please consider giving the school administrator a call for a tour. There is no commitment. Just have a look and see what you think. The school setting and special education team might be just what Lyla needs.”
Later that week, I went on a school tour and met with the school principal and Patrick, the occupational therapist Nicole had mentioned. Patrick told me he had been working with children with ASD for over twenty years and that many of the children at New Start also had SIB. After a half-hour tour of the building, we met as a group and I learned more about the school and the admission process. On the way home, I realized that I was actually feeling hopeful about the future and the idea that the school could help. I was then almost immediately sold on the school program, and thank goodness, they had space for her in her grade level classroom. With the help of some financial aid and enough in my savings account to cover the rest, I pulled Lyla out of the public school and enrolled her for the year at New Start Academy. She was scheduled to start the following week.
Transitions were always a challenge for Lyla, and they definitely were this time as well. But once she began working daily with Maria, the special education teacher, Patrick, and the rest of the team, the morning routine at school became easier. They seemed very sensitive to her needs, asked a lot about her “cues,” “strengths,” “triggers,” “befores,” “afters,” what worked, what didn’t work, etc., which seemed to help tremendously. It also made me feel good because I could actually do something to help my daughter, even if it just seemed like I was telling stories about her and things that happened. Nicole was also actively consulting with the school about Lyla’s case. After the first month, I met with the team to review her data and progress.
“We noticed pretty quickly when she started that Lyla had a high level of anxiety starting school in the morning, and while it would come down a little bit during the day, it seemed to remain fairly high,” Nicole said. “As you know, Maggie, when you were able to quickly get Lyla an appointment with her psychiatrist, and we were able to talk with him to communicate our school observations, we saw some improvement. The new psychotropic medication they started seems to really be helping with the anxiety. This has helped a great deal in the school. She’s been able to settle down easier and participate in the classroom with the rest of the kids. We’ve seen improvement in Lyla’s ability to stay regulated, and increased attention to school tasks.”
Patrick, the occupational therapist, discussed some of his work with Lyla. “Since your daughter started at New Start, she has demonstrated self-injurious behavior in the forms of head banging and arm biting. We’ve been collecting data for a few weeks now and using ABC charts and scatter plots. ABC charts allow us to look for patterns of a behavior, including setting events, and events that happen before and after a specific behavior, like SIB. Scatter plots allow us to examine other information including what time of day a specific behavior is occurring.
“After getting to know her for a few weeks, we’ve met as a group to compare notes, and complete some functional behavior assessment questionnaires. We’ve also reviewed records, and talked with you and her previous school to get their perspective on the behavior. At this time, we are continuing to work to create a behavior intervention plan from our assessment information. That will provide a school plan to apply across all teachers and staff, and we will share it with you as well. This plan will outline antecedent-based reinforcement, teaching, and responding strategies to address your daughter’s self-injurious behavior at school.
“Also, after taking a careful look at her incidences of SIB, more specifically head banging and arm biting, and looking for behavioral patterns, it seems as if the behavior occurs most often during more loud, active, and potentially over-stimulating times, typically right after group transition. We’ve noticed transitions to the classroom in the morning, after returning from the restroom, and after returning from lunch to be times of higher dysregulation and SIB.
“With your permission, we’d like to proactively start introducing the use of a body sock after these major transitions. A body sock is a spandex device that child simply steps into. It provides her with a sense of security and neutral warmth which helps many children with regulation problems feel safe, provides some deep pressure, helps with regulation, and then acts to prevent self-injurious behavior,” Patrick shared. “Eventually the goal would be for your daughter to communicate to us directly, verbally or nonverbally, to request to use the body sock during difficult times as this is a clear sign of growth in the capacity toward self-regulation. We are also ensuring that our environment is low stimulation and as regulating as possible for her, in particular during transitions. Finally, our teaching staff is also foreshadowing transitions with words and picture symbols to signal transitions in advance, and Lyla has a daily visual schedule that uses pictures to support her understanding of changes during the day.”
He added, “Although Lyla rarely demonstrates SIB at home, and we haven’t seen her exhibit the behavior to the degree that she was at her former school, we’d like to ask that you inform us of any changes you notice at home. We still need to learn more, and will over time, but we think we have a better understanding of what is underlying Lyla’s SIB and we are developing some strategies to reduce it over time in the school setting.”
Patrick and the team’s report comforted me greatly.
“All I can say is thank you very much. Yes, of course you have my permission to try the body sock in the school and thank you for all of your work. I feel for the first time in a while that there is some hope and that my daughter might stop hurting herself like she has been. I want to help Lyla however I can, even if she can’t always tell me how or what to do. It’s just a relief to know that something might actually work.”
Seemingly out of nowhere, I began to cry. I finally felt safe enough to let out my stress and release the tension I’d been feeling. I put my head in my hand, which caused my neck to stretch. My tight muscles said it all—I’ve been feeling desperately anxious and exhausted for months.
Nicole moved closer to me and put her hand on my elbow. “We understand, Maggie. Really. Lyla is going to get the help she needs. You will too.” Nicole’s comforting words made me cry more deeply.
And while I knew that Lyla was unable to verbally communicate and tell me what was going on inside of her, I had learned that her behavior was truly a form of communication and expression. Adults in a child’s life can always remember to take a step back and try to figure out what the child’s concerns would be if she had the words to say them.
With the decrease in dysregulation and self-injurious behavior, it seemed that some need was being better met and Lyla was hopefully feeling a deeper sense of safety and security. As her mother, I also had the feeling that she was aware of how much I loved her and how far I’d go to protect her from anything dangerous or harmful, even if it was from herself.
*This story is part of a series based on the experiences of educators, parents, and the staff at Genesee Lake School, a nationally recognized provider of services for students with special needs. GLS is part of ORP, an employee-owned family of companies whose mission is to make a difference in the lives of people with disabilities.
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