A 25 Year Look Across the Spectrum with Kelly Bermingham & Jen Lucero
By Kelly Bermingham
A 25 Year Look Across the Spectrum with Kelly Bermingham & Jen LuceroOct 14, 2020
The Dreaded Blood Draw
Studies show that individuals with ASD have greater medical fears as compared to their peers. Kelly & Jen share their experience, strategies and research related to blood draws from their perspectives with their children who are now fully comfortable and independent in getting their blood drawn after years of stress!
Information:
A pilot study to improve venipuncture compliance in children and adolescents with Autism Spectrum Disorders - PMC (nih.gov)Blood Work Parents.pdf (autismspeaks.org)
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Assume That I Can: Including Assent, Caregivers and Clients, Toward Socially Meaningful Work
Kelly and Jen do I deep dive into the video, Assume That I Can, released on World Down's Syndrome Day, and talk about how our ethics code, 2.09, Involving Clients and Stakeholders and this video intersect into preference assessments for the purpose of assent and goal development.
Measuring Quality of Life as an Outcome of ABA Services
Kelly and Jen are joined by Meghan Herron, Director of Research and Development from Easterseals, Southern California to discuss her research looking at measuring Quality of Life as an outcome for ABA services and discuss how this can be considered by any ABA practitioner, working alongside families.
Questionnaires - kidscreen.org
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QOL Measured by Happiness Indices in Recreational & Leisure Events
There is research that suggests that individuals on the autism spectrum experience a much lower quality of life than nonautistic individuals across the lifespan. Quality of Life can be measured by happiness, which is considered a private event by behavior analysts. Indices of happiness are those observable behaviors that likely signal happiness, including smiling, laughing, and the absence of challenging behaviors. Both leisure skills and recreational skills are all ways to be happy yet are not often taught or included in programming or households living with autism.
Kely & Jen dive into the research and talk about the ways that Kelly has programmed for leisure and recreational skills and Jen has taught her own severely impacted son to have a very happy life.
Sponsored by: Cite Pro DEFINING, VALIDATING, AND INCREASING INDICES OF HAPPINESS AMONG PEOPLE WITH PROFOUND MULTIPLE DISABILITIES - Green - 1996 - Journal of Applied Behavior Analysis - Wiley Online Library Defining and Measuring Indices of Happiness and Unhappiness in Children Diagnosed with Autism Spectrum Disorder | Behavior Analysis in Practice (springer.com)
The Group Experience
Kelly talks about her new book, including programming social skills intentionally to include group learning for children, and the difference between curriculum-based and activity and individualized learning.
Buy her book here: The Group Experience – Different Roads (difflearn.com) Sponsored by Cite Pro
Helping Behavior Therapists/RBT's with Burnout: Let's Get Real
Kelly and Jen talk with long-time RBT's Stephanie and Salvador about how they have managed to stay in the field for so long, and the real ways BCBA's and families can help support and prevent burnout. It's pretty real concrete and not rocket science.
Parent-Led ABA......Hmmmm
Article referenced:
bhbusiness.com/2024/01/09/parents-are-desperate-parent-led-aba-provides-tantalizing-remedy-to-autism-therapys-challenges/
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A BCBA and a Caregiver Talk ABA Hours Fulfillment
Kelly and Jen talk about each of their perspectives regarding fulfilling the recommended hours of authorization. Some ABA companies often refer a family there to another agency if they do not commit to being able to use all of the hours. What do you think?
Weeding Through Evidenced-Based and Alternate Therapies
Got Ethics?
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You can find the Dear Don Casp Ethics Webinar here:
Dear Don Ethics Panel (Nov 2023) - recorded - Council of Autism Service Providers (casproviders.org)
Autism and Divorce
Although the data is varied, some data suggests that parents of a child diagnosed with autism have a higher chance of divorce than their counterparts, especially if they are younger when married and have a child early on in their marriage. Parents raising children with autism experience greater marriage strain in part due to stress related to resources, severity of Autism symptoms, and concerns over long-term care. Kelly and Jen have both experienced this firsthand and share their experiences. Sponsored by Cite Pro
ABA & ADHD: From a Caregiver & BCBA Perspective
Kelly and Jen speak to Jennifer, BCBA, and mom to her 13-year-old son with ADHD. She shared his struggles with ADHD and anxiety coming out of the pandemic, trying to organize his homework and keep us with social pressures that ultimately led to hospitalization. Research tells us there is a stronger link between homework difficulties and ADHD than the general population. The National Institute of Mental Health suggests medication and behavioral therapy as the two main treatments. But how do you know when to do what? Hear Jennifer's story and her advice to caregivers and BCBAs.
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Cyber Safety & Autism
Up to 75% of autistic children and adults will be bullied over the internet or taken advantage of in some way. Predators look for those who may not understand the nuances of social cues making autistic children and adults targets. In this podcast, Kelly speaks with Dennis Debbaudt, long-time safety trainer and author on how to create a cyber safety plan. Links for filters and protections can be found here:
Dennis: Autism Risk & Safety Management | Autism Training for Police (autismriskmanagement.com)
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Considering the Behavior Therapists Perspective
Kelly & Jen talk with long-time Registered Behavior Therapist Salvador Cadenas about why he works with children and adults on the autism spectrum with severe behavior and shares his perspective on what BCBAs and families get right to keep behavior interventionists (RBTs) in their jobs, and what they don't get right, which may contribute to turnover and burnout. In this session, we also discuss the importance of not using jargon when working with families and reference the following research article:
Effects of Jargon on Parent Implementation of Discrete Trial Teaching | Request PDF (researchgate.net) Salvador is also a published author and you can find his book here:
The Lonely Blue: Cadenas Jr, Salvador, Bacon, Erika: 9798511837178: Amazon.com: Books Sponsored by: Cite Pro
The Benefits and Challenges of Exercise with Children and Adults on the Autism Spectrum
Considering Medical Needs as Behavior Analysts and Caregivers
Kelly & Jen wrap up season 3 by talking about the Ethics Code for Behavior Analysis, specifically 2.12, Considering Medical Needs. "Behavior Analysts ensure, to the best of their ability that medical needs are addressed and make referrals as needed." From the caregiver's perspective, finding qualified medical professionals that understand and even help those on the autism spectrum is nearly impossible. With GI disorders nearly eight times more common in children and adults with autism than other children and adults, a call to action must happen. Sponsored by Cite Pro
Moving on After Your Child with Autism has Been Aggressive Toward You
Joint Attention is a Behavior Cusp Skill
When an infant's attention is drawn to another person's face and voice, they experience a positive emotion as the amygdala and prefrontal cortex are activated. These networks are often faulty in children on the autism spectrum. As a result, no MO is created for wanting to look toward others. Coordinated eye gaze and shared experiences with others, knowns as joint attention, is considered a prerequisite skill for other skills including imitation, social engagement, and communication, a behavior cusp skill. Teaching this skill is often left out of ABA programs because it is challenging to teach, and requires very thoughtful and specific planning. Hear more from Kelly about this topic and learn how you can have further training on this topic from her. Social Skills Collaborative - Autism Skills & ABA Training. Or join my Patreon for monthly learning: Social Skills Learning Collaborative with Kelly (McKinnon) Bermingham | Creating ABA content for therapists and parents | Patreon Sponsored by Cite Pro
To use Extinction or to not use Extinction
Extinction can best be defined as the discontinuing of reinforcement of a previously reinforced behavior (i.e., response no longer produces reinforcement). The goal of extinction is for the behavior to cease without having used a punishment procedure. Over the years the concept of extinction has become controversial. Kelly & Jen break down the different functions of behavior and discuss why extinction may or may not be warranted, from a BCBA and a caregiver perspective.
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How do you Connect with a Person Severely Impacted on the Autism Spectrum
Kelly and Jen speak with frequent guest Susan Senator about her recent article, "The Secret to Connecting with My Autistic Son." Is it something learned, or do you have to be taught? Why will some people work with the more severely impacted children and adults on the autism spectrum and why won't others? What's the secret to connecting with this group of people?
Susan Senator is the author of numerous autism books; her writing has appeared in the New York Times, and The Washington Post, among others. She is a contributing author to Psychology Today. The Secret to Connecting With My Autistic Son | Psychology Today
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Neurodiverse and Severe Autism: Can't We All Get Along?
Kelly & Jen talk about the role of ABA, strength-based assessments, and the ethical considerations when assessing and treating people with autism across the varying levels of severity of autism, with considerations of consent and assent.
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We Feel Like Frauds Today
Parenting a child on the spectrum, being a BCBA supporting that parent, is all hard work! Even after over 20 years, we don't always know what to do and feel lost! We talk through how we both had a week feeling like frauds, and how we brought ourselves out of it (again) to continue marching on!
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Dinosaurs of ABA
Kelly is joined by Amanda Ralston, founder of Non-binary Solutions. Home | NonBinary Solutions. Kelly has been certified by the BACB for over 20 years, and Amanda since the turn of the century! They discuss their journey in the field including the changes that have happened in the field; working without any formal code of ethics until 2014 and being 2 women in a field dominated by men. The future indicates that while we are still a young field with much to accomplish, technology, compassionate care, and quality-of-life indicators seem to be leading the way.
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The real holiday tips! Tips beyond the basic tips!
Kelly is joined again with Kelly Haysley, mom to 3 children, 2 on opposite ends of the spectrum to talk about the REAL tips for getting through the holidays, beyond the fluffy memes you see out there posted this time of year. They talk about individualizing the holidays for each child and family, including how to find joy in the season, the unschool time, and the non-therapy therapy. (Jen was out sick! She will be back next week!)
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Understanding the cycle of grief, guilt and joy raising a child on the autism spectrum
Kelly & Jen are joined by mom and advocate Kelly Haysley, mom to three children, two diagnosed on the autism spectrum. We discuss Kubler-Ross cycle of grief, and how this cycle repeats and repeats, adding guilt and stress, and how embracing the joyful times are worth it, even if it means not "running the program and taking data". They have specific tips for BCBAs to know. Five Stages Of Grief - Understanding the Kubler-Ross Model (psycom.net)
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Got sleep? Not likely if you are raising a child with ASD
Sleep problems are among the most urgent concerns for families grappling with autism. Nearly 80% of toddlers with ASD have disrupted sleep. Issues related to falling asleep, and more importantly staying asleep result in those living with ASD being in REM sleep 15% of the time, vs 23% of their neurotypical counterparts. But what about the caregivers? How does this affect them, and what can we do as BCBAs to help? Kelly & Jen talk all things strategy they have learned over the last 25 years. Find the article on sleep here: Sleep problems in autism, explained | Spectrum | Autism Research News (spectrumnews.org)
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A Call for a Discussion on Stereotypic Behavior
Kelly & Jen speak with Melissa Saunders, Ed. D, BCBA-D about her, and others recently published paper, A Call for a Discussion on Stereotypic Behavior. This topic has become a very decisive topic and the three break down the topic in a way BCBAs and caregivers can relate to. Find the paper here: Full article: A call for discussion on stereotypic behavior (tandfonline.com). We are proudly sponsored by Cite Pro
Compassionate Collaboration & Ruling out the Medical Stuff
Taylor, Leblanc & Nosik wrote about the need for training for BCBAs and compassionate care. Their survey of caregivers found that many caregivers feel their BCBA is distracted and too focused on solving the problem. Kelly & Jen discuss what this looks like and talk about how the medical issues for those living with autism, like Dylan, can be so stressful and impactful on the family, compassion is key. Compassionate Care in Behavior Analytic Treatment: Can Outcomes be Enhanced by Attending to Relationships with Caregivers? - PMC (nih.gov). Sponsored by Cite Pro
What caregivers want from their BCBA
Most BCBA training programs don't discuss caregiver perspectives, yet caregivers are the ones raising their children with autism. Caregivers often meet up to 10 different BCBA's in their journey. Listen to Kelly & Jen talk about the good and the not-so-good things a BCBA can do when meeting and working with families with children with autism. Kelly references her favorite article on this compassionate care model, written by Dr. Taylor, Dr. LeBlanc, and Dr. Nosic.
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Climbing Back up the Cliff
Season 3 of our podcast is starting! In this episode, Kelly, BCBA, and Jen, mom to Dylan & Ethan discuss a previous from season 2 titled, "Transition into Adulthood or Falling Off a Cliff. Dylan graduated from his transition program in December 2022, during the pandemic. Covid and staffing shortages have been a crisis for those seeking services for their children and adults on the autism spectrum. Day programs have not admitted new clients, and some programs are closing due to a lack of adequate staffing. Kelly and Jen discuss the current options and how Dylan is doing now.
Day Program Closures Forcing Some Parents To Quit Jobs - Disability Scoop
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Acknowledge Him as a Person
Kelly & Jen speak with Jennifer's son, Ethan, age 20, who shares his perspective on what age to talk to children about their sibling's autism, how volunteering in the autism community while also having his own activities made him the man he is today, and how he began to choose the people he surrounds himself with others that acknowledge his brother as a person. He shared his childhood and advice to others raising or working with those on the autism spectrum. We are proudly sponsored by Cite Pro. www.citepro.com
One Perfect Day with Surfer's Healing
Kelly & Jen chat with long-time friend Izzy Paskowitz about Surfer's Healing, an original surf camp for children and families living with autism, and how that one perfect day in the water surfing can be exactly what that child and family needed. Founded in 1996, and a huge part of Jen, Dylan, and Ethan's life, the surf team is ready to get back to it this summer. You can find more about them here: Home | Surfers Healing
The Great Resignation is NOT Over, and it is Hurting the People That Need Us Most
This last year saw major changes in the field of ABA and other fields supporting children and adults with autism. Employers struggled to support team members remotely. People had major events happen in their lives after a year+ of pandemic life and many walked out and quit. Left behind are the families. Kelly and Jen talk about how difficult this has been as an employer and as families living with autism. On a positive note, Dylan and many others learned how to accept changes more smoothly! What are you doing to adjust to this?
April is .....What Month?
April started as Autism Awareness Month. It has now become a decisive month with groups split and arguing about what the month and message should mean. We believe in awareness, acceptance and action. Kelly & Jen talk with the Vice President of National Council on Severe Autism and published author Amy Lutz, and her amazing daughter Erika Lutz who bring a refreshing take on the arguing. Erika, brother to Jonah living with profound autism comments, "There is room for #actuallyautistic people, family members and caregivers in the movement." Find out more about NCSA here: National Council on Severe Autism (ncsautism.org) and find Amy's book here: We Walk: Life with Severe Autism (The Culture and Politics of Health Care Work): Lutz, Amy S. F.: 9781501751394: Amazon.com: Books
Taking Risks and Making Change is HARD. But it is the Key to Moving Forward
Kelly & Jen talk about the risks and change they have done to move their children forward in life. Kelly describes the steps she and her husband took to take the risk of having their daughter move out on her own. The same type of steps applied to Jen trying to buy a new bed and furniture for Dylan. These risks are hard. Change is hard. It is the path forward.
Transition into adulthood or falling off a cliff?
Jen & I talk about the process, and Dylan's experience of graduating high school with a certificate, entering a high school transition program until he was 22, graduating to an adult day program, oh wait. No, he didn't. Covid partly to blame, but the system failed him, and as of right now he is home, bored, sad and starting to regress. We won't take this- but this could happen to you! Listen to our story.
Just Because it is Evidenced-Based Doesn't Mean You Apply the Strategy: Don't Forget the Analysis
Kelly speaks with Kristine Rodriguez, Chief Clinical Officer at Autism Learning Partners, and Co-lead of the CASP Client Outcomes SIG, breaking down the concepts of evidenced-based treatment and the importance of individual analysis before applying strategies in intervention.
Slocum, T. A., Detrich, R., Wilczynski, S. M., Spencer, T. D., Lewis, T., & Wolfe, K. (2014). The Evidence-Based Practice of Applied Behavior Analysis. The Behavior analyst, 37(1), 41–56. https://doi.org/10.1007/s40614-014-0005-2
Lechago, S. A., & Carr, J. E. (2008). Recommendations for reporting independent variables in outcome studies of early and intensive behavioral intervention for autism. Behavior modification, 32(4), 489–503. https://doi.org/10.1177/0145445507309034
Geiger, K. B., Carr, J. E., & Leblanc, L. A. (2010). Function-based treatments for escape-maintained problem behavior: a treatment-selection model for practicing behavior analysts. Behavior analysis in practice, 3(1), 22–32. https://doi.org/10.1007/BF03391755
Grow, L. L., Carr, J., & LeBlanc, L. (2009). Treatments for attention-maintained problem behavior: empirical support and clinical recommendations. Journal of Evidence-based Practices for Schools, Vol. (10), 70-92
Tiger, J. H., Hanley, G. P., & Bruzek, J. (2008). Functional communication training: a review and practical guide. Behavior analysis in practice, 1(1), 16–23. https://doi.org/10.1007/BF03391716
Ferraioli, S., Hughes, C., & Smith, T. (2005). A model for problem solving in discrete trial training for children with autism. Journal of Early and Intensive Behavior Intervention, 2(4), 224-246. http://dx.doi.org/10.1037/h0100316
Brodhead, M. T., Quigley, S. P., & Wilczynski, S. M. (2018). A Call for Discussion About Scope of Competence in Behavior Analysis. Behavior analysis in practice, 11(4), 424–435. https://doi.org/10.1007/s40617-018-00303-8
How do you know a good behavior therapist when you see one?
Behavior therapists are the backbone of ABA services for children and adults. While certifications such as the RBT certification help as a starting point for quality care, what are the "soft skills" that make a really good behavior therapist. Kelly gets Jen's perspective, as a parent, on what a parent is looking for in therapists coming into their home.
Got toothbrush? The struggle is real: getting your child to brush their teeth and go to the dentist!
Kelly & Jen talk through the real challenges and real solutions to support children with autism to brush their teeth and prepare and go to the dentist. Kelly shares information from the study she participated in on how to use analytic strategies to teach these specific skills. Access to Dental Visits and Correlates of Preventive Dental Care in Children with Autism Spectrum Disorder | Request PDF (researchgate.net)
Try this kit to practice and prepare for the dentist! Brush and Bite Starter Kit – Triple Bristle
Caregiver Collaboration Not Parent Training. Making Collaboration Effective.
Kelly & Jen are back with Heather O'Shea, BCBA-D and Bianca Ancona, mom and manager of team Jack to talk about collaboration: the process of two or more people working together to complete a task or goal. It neutralizes the power differential in the relationship. It's about the BCBA saying, "What can we do to help improve the quality of life for you and your family" and the two coming together to form a team do just that.
What's in a name? Parent Training or Caregiver Collaboration
Kelly & Jen talk to Heather O'Shea, CASP Caregiver Collaboration SIG Co-leader (Kelly leads with her) and Bianca Ancona, mom, and leader of "Team Jake" about what is in a name. Why the term Caregiver Collaboration or Team Member is much more meaningful to them as caregivers, and the notion of BCBA's giving caregivers pop-quizzes about ABA terms or expecting caregivers to learn all of the technical language is not helpful or useful. Instead, they share that their child's individual goals are their caregiver goals, and they love the idea of support and collaboration this way. We do too. We do too.
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The Practice of Treating Others with Compassion, Dignity & Respect. BACB 2022 Ethics Code Core Principle #2
Kelly & Jen talk to Mom, author and blogger, Susan Senator (susansenator.com) and Lyndsey Radcliffe, CEO of Morningstarabatherapy.com and an individual diagnosed on the autism spectrum about the importance and challenge of talking with and including the child/adult with autism into the conversation. To quote Susan's Facebook post: "How the fuck do I get the people in my life to stop talking about Nat in front of him as if he does not understand? When people talk about him in front of him, I die a little on the inside." We do too Susan. Let's chat about how to do this effectively and appropriately as practitioners, parents and family members. With so many newly minted BCBA's we HAVE to train for this and #dobetter. www.susansenator.com Magazine: A different way of seeing: Local business owner changing the national conversation around behavioral science (5/10/20) | Southeast Missourian newspaper, Cape Girardeau, MO (semissourian.com)
Transitioning Therapists the Right & Ethical Way
In this podcast, Kelly & Jen tackle the topic of the current high turnover rates in the ABA therapy world and what that impact had on the clients and the families. Hear the best ways you can do this from a parent perspective, and hear how badly it can go when not done properly, including leading children to become aggressive toward themselves and others. Includes new Ethic Code points 3.16 Appropriately Transitioning Services (see 1.03, 2.02, 2.05. 2.10). 4.12 Appropriately Terminating Supervision (see 1.03, 2.02, 3.15)
Going Into the Holidays.......
As we go into the holidays, are you going to use this time to completely relax, to maintain skills, try and learn a new skill you focus on or go to the September26th.org website and make sure you are prepared? Listen to Kelly & Jen speak from experience on this topic and hear how Dylan has made many gains during his holiday breaks! As ABA providers we owe it to our families to review and help them organize how to spend their holidays.
Autism & First Responders
With the rates of autism increasing every year, the number of high-profile incidents involving law enforcement and the autism population are on the rise. As ABA providers we often try to train first responders but are we really capturing their attention? Kelly & Jen speak with Kate Movius, founder and owner of the Autism Interaction Solutions where she brings in trainers with autism and provides a very specific and scenarios-based training to law enforcement and other first responders. Listen to how she does this so effectively. Check her out here: Autism Interaction Solutions
Bullying stories from a young man with autism
Kelly & Jen speak with Thomas, a 28 year old man with autism and hear about his experience being bullied, and how him mom helped train the schools and get a teacher advocate. Want to know what that is? Give us a listen.
It's National Anti-Bullying Month. How Does this Affect the Child with ASD?
Kelly & Jen interview friend, fellow board member and founder if the Kind and Safe School Programs to promote Ability Awareness. Listen to the incredible statistics, (40-70% of kids with ASD reported being bullied) how to support the child living with autism toward bullying prevention and how this relates directly to our 2022 new ethics code. Do you know what to do for the child that is being bullied? Ability Awareness Project (kindandsafeschools.org)
The September26th project discussion with its co-founders
Kelly, co-chair of the September 26th project speaks directly with Maysoon Salah and Lubna Lana Salah about the September 26th project that turns tragedy into a wonderful legacy to remind families of children affected with autism, as well as a call to ABA providers to focus on the importance of safety preparation and practice. Safety is at the core of all individuals. Go to the website, use the checklists and resources to prepare yourself for safety and how to evacuate in the event of an emergency. As families and ABA providers we should unite toward this cause. www.september26.org
Covid, anxiety and be better for our kids
On this short episode, Kelly & Jen talk about how are current state with COVID feels so much more stressful for our kids and their families with the constant changes, and how angry and polarizing this has become for everyone. We all have to be better for our kids.
Being fire safety ready with the September26th project. CALL TO ACTION
Kelly & Jen talk with John Merager, Fire fighter and Fire Prevention/Patrol Forest service and dad to a child on the autism spectrum to continue work of the September 26th project. The project is call to families to set their calendar for an annual reminder using our fire safety checklists. September 26th Project. As BCBA's we have so much time assessing and working with families this checklist should be used in our parent clinical interview to determine their safety needs and readiness, and to help families develop an exit plan, a meeting place, a designated family member to get the child with autism out and to the meeting place. Use visual strategies, behavioral rehearsal and reinforcement procedure to practice your child respond to "Emergency, go with me now" SD. Support your family to go to the fire station and meet their team. See if they need training and support. Include fire safety and exit plan in the IEP instead of avoiding the sound.