By Dr. Cecilia Scott-Croff
This issue of NASET’s Autism Spectrum Disorder series was written by Dr. Cecilia Scott-Croff, Executive Director of the Early Childhood Center at Borough of Manhattan Community College (BMCC).In the article, she address her encounter parents and professionals who inquire about her journey of parenting a child with autism. As she states. “Some days I’m ready to talk for hours. Other days I cannot complete a sentence. My son’s diagnosis has created a mix of emotions. At the onset, I was frightened, anxious, angry and confused. Professionally I wonder all the time about what to say to parents after they disclose their child (ren’) diagnosis. How do I support them? What resources should I provide? Am I the right person to talk to them? Am I overwhelming them by talking too much?”
Introduction
Some students with autism spectrum disorder (ASD) may be characterized as displaying behavioral challenges and have difficulties with communication and social skills in the inclusion classroom setting (Majoko, 2016). These students struggle when faced with new routines, new individuals and social events, peer to peer interactions and daily activities that their non-disabled peers complete with ease (Fitzpatrick, Srivorakiat, Wink, Pedapati, & Erickson, 2016). ASD is a neurological development disorder that affects an individual’s ability to effectively communicate and socialize with peers (Jagan, & Sathiyaseelan, 2016). However, studies and research have shown that individuals diagnosed and treated at an early age have greater success with communication skills later in life (Jagan, & Sathiyaseelan, 2016). Early intervention includes exposing students to social situations, body language, verbal and non-verbal language, at home, in school, throughout the community and in the clinical settings. These are areas many individuals with autism struggle with on a daily basis (Jagan & Sathiyaseelan, 2016). Studies in autism have shown males are more likely to be diagnosed with autism than females. Males with autism have the same developmental sensors in their brains as females with autism, however the receptive parts of the male brain that reacts to decision making, differs from males to females (Hall et al., 2012)
Abstract: The author provides a review of a parent impacted by her child’s diagnosis of autism and navigating support
Keywords: Parents, Special Education, School District and Challenges
I encounter parents and professionals who inquire about my journey of parenting a child with autism. Some days I’m ready to talk for hours. Other days I cannot complete a sentence. My son’s diagnosis has created a mix of emotions. At the onset, I was frightened, anxious, angry and confused. Professionally I wonder all the time about what to say to parents after they disclose their child (ren’) diagnosis. How do I support them? What resources should I provide? Am I the right person to talk to them? Am I overwhelming them by talking too much?
Challenges-As it relates to my own experience as a parent, I’ve dealt with; awkward silence, resistance, random hugs and sighs of relief it’s not their child. While autism presents differently in each child (Autism Speaks, 2014) my son experienced sleepless nights, strong food preferences; rigid behavior and echoic speech. Echoic speech is the use of the same words or phrases repetitively (Autism Speaks, 2014). Upon hearing about my son’s diagnosis, some colleagues would say “I’m so sorry”. I informed them, there is no reason to apologize. I view life like a deck of cards. One play’s the hand their dealt. My son is a rock star. He has exceeded all expectations of him. Parents don’t want sympathy; they want understanding (Chiang, 2014).
Finances – As they seek to obtain support for their child, parents may incur considerable out of pocket cost. This may lead to financial challenges for some families. They may also face challenges in their relationships (Anderson, et al, 2008). It is important for parents to build relationship that garner a sense of trust, honesty and transparency with service providers (Chiang, 2014). For parents as well as practitioner I recommend the following:
Active listening- Parents require professionals to simply listen at times. Hall and Graff (2011) also posit that parents must have a safe place to continue to process the impact of their child’s life long disability. This comes with many emotions and trails. As it relates to my own experience, my son’s adaptive physical education teacher sends me videos of my son’s sessions. In one of the videos, my son seemed to be having a hard time. I asked his teacher about it. He responded; my son was a “sniffling, weeping, nose running and eyes watering kid all day.” He further noted with a little water and a few breaks, he was able to complete the day’s activity. In that moment I heard, “your son is resilient and your concerns matter”. I also heard, he’s okay Mrs. C.”
Experiences-By sending his videos he allowed me to participate in his sessions with my son. I have been able to view first hand my son’s progress over time. It’s just pure joy to be able to view his work with my son. It takes a lot of time and commitment as a professional to complete them. My son’s teacher is intentional about his teaching. Bredekamp (1997) posits that an intentional teacher plans appropriately. They are intentional in everything they implement in a classroom. This includes their interactions with children. My son’s teacher is confident in the relationship he has cultivated with families. He has created a community of respect and trust.
Shared resources – Once a professional states “Your child has autism”, parents want to know what services are available and what they can do to support their children. Parents may ask, “What is autism?” (Scott-Croff, 2017). Many simply do not know. They require guidance through the road blocks to quality services (Chiang, 2014; Mack, 2008). As noted in the research by Mack (2008) sometimes the best service recommendations are from other parents. I found out about the Center for Autism Related Disorders from a parent. Steeped in research and empirically based practices, this applied behavioral analysis influenced program documents and records data of my son’s uniquely developed program. The program teaches children practical life skills. Mack (2008) posits, parents are encouraged to build networks of support with each other to negotiate the multiple challenges they face.
An open-door policy and transparent communication– Parents require professionals willing to engage families in meaningful ways (Anderson et.al, 2008). This includes professionals able to inform parents of the challenges they may encounter on their journey toward accessing services and service eligibility (Anderson et al., 2008). It was a tough road for my family to obtain Office of People with Developmental Disabilities (OPWDD) eligibility. The purpose of OPWDD is to fund services for individuals with disabilities. Countless phone calls went unanswered, I was in tears some days and angry others. I just wish I had a provider willing to say, “It will feel like a daunting and overwhelming task, you may become discouraged by the system, but just stay the slow and steady course”. I wanted to hear; “I’m here to work with you”. Honesty, integrity, transparency and well thought out responses to parents’ many inquiries goes a long way (Chiang, 2014).
Intentional parent engagement- This allows service provides to address parental concerns in a timely manner (Anderson et. al, 2008). The research of Mack (2008) asserts, parents want what’s the best for their children. Mack’s (2008) research further posits, parents require support with obtaining the assistance they desperately need. The first year of my son attending public school was tough. My son had a limited diet and strong food preferences. The noisy cafeteria along with his sensory issues made it difficult for him. Coupled with acclimating to his new environment, this effected his eating. Matthew often returned home with his uneaten lunch. I scheduled an appointment to meet with the principal. The Principal noted there was support staff assigned to the cafeteria.
After some further discussion, the Principal abruptly stood up. She was exacerbated. As I reiterated my concern, she stated to my concerns, “well, I’m for all children”. I informed her “that’s great to know, however, we are discussing my child”. It felt dismissed in that moment. I was not surprised I encountered the same problem later that week. I went back to the school. I informed her that I would be there every day for the next week or few weeks, whatever it took to resolve the matter. I further explained that I needed a partner, someone invested in resolving the situation. At the end of our discussion, I informed her, I could be a supportive parent or her worse nightmare. It was up to her to choose. She looked at me incredulously. I did not want to engage in confrontational behavior with the Principal. However, I needed her to understand it was unacceptable for a non-verbal child with sensory integration issues to be thrown into a cafeteria with twice the number of children he was accustomed to. I further noted, my son required support at lunch time. He has a social and communication disorder. In his previous setting, my son ate in his classroom. He interfaced with small number of children during lunch. How could they expect him to eat without prompts or guidance? Maslow’s hierarchy of needs (1962) indicates food is a critical element to one’s ability to focus and function within their environment. How could my son function effectively without eating? The principal’s plan was ineffective. I simply requested she rectify it.
The second startlingly interaction with a school official occurred this past summer. I wanted to plan for the upcoming year. The Principal’s office was being renovated. He had one chair in it. Upon my arrival, he commenced to asking me about my concerns. He did not offer me a seat. Observing this, I decided to take out my laptop as if I had an agenda prepared. It was then, he decided to find a place for us to sit and talk. During the meeting his generalizations led me to believehe did not know my son. I decided it was my role to ensure he knew my family and my son well. District leaders at times are ill equipped to deal with their mounting responsibilities, budget constraints, the number of families they serve and the regulatory mandates for children with special needs (Howard, Williams & Lepper, 2010). They may meet the minimum standard, but the needs of all children, more often than not, are not met (Anderson et. 2008). I asked a parent advocate once, how can my child at that time, have no language, receive speech just twice a week. How is this deemed as a free appropriate education (Scott-Croff, 2017)? I loudly proclaimed; “it’s the law, my child has a right to a free and appropriate education”, why must I constantly remind the district of his needs. I further asserted, “it is not fair to my child. Why do I have to work so hard to protect his rights”? She consoled me. She then stated, the district has so much to do to maintain compliance with the law. As a parent, you just have to ensure your child does not fall through the cracks” (Naomi, Brickel, 2018). In my experience the school based support team changed multiple times. This occurred without notice to parents. Due to this cyclical turnover, it was hard to form meaningful relationships with the individuals making decisions about our children. I’ve felt handed off by the principal and service providers. I traveled by public transportation for two hours to meet with a service representative. I arrived, and she informed me, I would be meeting with her colleague. I had been corresponding with the provider for weeks. I once ended a service planning consultation due to divisive demeaning language and micro-aggressive tactics from the chair of the meeting. I’ve had numerous emails unanswered.
Road Blocks- Identifying ways to avoid road blocks during service eligibility hearings and planning meetings is vital. During this time, a parent advocate is a useful resource. (Brickel, Hudson Valley Special Education Parent Center Director, 2017). The most well-educated and knowledgeable parents will encounter road blocks and require assistance negotiating the needs of their children (Shulman, 2018). Creating allies not enemies is an important practice to learn. It is best for parents to work proactively with school officials and service providers (Anderson, et al, 2008). This may be done by; (1) getting to know your rights as a parent; (2) scanning every document about your child’s care, services and diagnosis for future meeting; (3) purchasing a notebook to track phone calls or emails sent; (4) obtaining names and numbers of every committee member. The research indicates, parents must remain committed to developing a collegial and mutually beneficial relationship (Anderson et al, 2008).
Join a board- The research encourages parents to increase their knowledge about autism. The science and the research of the disorder is forever changing (Schreibman & Koegel, 2005). Understanding the latest research serves as an advantage during planning meetings. It is an invaluable tool used during the onset of a child’s diagnosis. Early intensive behavioral interventions as well as planning is important (Anderson et. al, 2008). Joining the local Special Education Parent Association (SEPTA) is helpful as well (Anderson, et al 2008).
Obtain therapy as a family if possible- A family is like building a foundation. If it is weak, it will collapse. The research of Chiang (2014) indicates, parents experience trials in their intimate relationship while caring for a child with special needs. Professional support to address the many feelings associated with this journey is important.
Conclusion-Parents contend with many challenges, stress and fear being the top two. Talk to as many parents as possible to elicit ideas about services as well as to develop supportive networks within your respective community. Working toward collaborative efforts during service planning meetings and striving for participatory planning is a challenge for parents with special needs children. Develop expectations of service providers and work to ensure they adhere to them. Make your needs and request known. As a parent, I wanted to be involved in planning for my son. While I certainly encountered difficulty with service providers, I’ve had a lot of victories too. Early intervention is a wonderful family focused service with lots of parent support. The committee on pre-school instruction can be the same. However, special education services in the public school can be a challenge for families. Public school settings at times present more challenges for working families, families with language barriers, different socioeconomic status and time commitments. I want updates about my son’s progress well before the annual meetings. I don’t want quick perfunctory communication. I also want his providers to know despite all my concerns and expectations, I appreciate them.
I wrote to his psychologist to say, “As the weeks past and the school year winds down and we part ways, I would be remiss if I forget to say thank you. Thank you for being a consummate professional on days I behaved badly. For always thinking of my family, giving counsel and placing my son’s needs first, despite the many district constraints. For returning every email and phone call. For always having a welcoming smile. For listening to my long-winded responses. Most of all, for truly understanding, I am just a mother trying to do right by the most precious gift the Universe has ever granted me”. Provide parents with an option to do so.
References
Anderson, W., Chitwood, S., & Hayden, D. (1997). Negotiating the Special Education Maze. Bethesda, MD: Woodbine House.
Bredekamp, S. (1997). NAEYC issues revised position statement on developmentally appropriate practice in early childhood programs. Young Children, 52(2), 34-40.
Chiang, H. M. (2014). A parent education program for parents of Chinese American children with autism spectrum disorders (ASDs) a pilot study. Focus on Autism and Other Developmental Disabilities, 29(2), 88-94.
Hall, H. R., & Graff, J. C. (2011). The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric nursing, 34(1), 4-25.
Mack, K. G. (2008). Beyond the barriers: A qualitative investigation into the experiences of general pediatricians working with young children exhibiting developmental delays and disabilities (Unpublished doctoral dissertation). University of Florida, Orlando, FL. Retrieved from http://scholarcommons.usf.edu/etd/372
Schreibman, L., & Koegel, R. L. (2005). Training for Parents of Children with Autism: Pivotal Responses, Generalization, and Individualization of Interventions.
Scott-Croff, C. (2017). The impact of a diagnosis of autism spectrum disorder on nonmedical treatment options in the learning environment from the perspectives of parents and pediatricians (Doctoral dissertation). Retrieved from Fisher Digital Publications. (Paper No. 341).
Speaks, A. (2014). DSM-5 diagnostic criteria. New York: NY. Author retrieved, August 10, 2014.
About the Author
Dr. Cecilia Scott-Croff has more than twenty-five years of experience in the fields of early childhood, special education, and advocacy. Cecilia serves as the Executive Director of the Early Childhood Center at Borough of Manhattan Community College (BMCC). She is certified as an early childhood special educator and administrator. She is an adjunct professor at BMCC. She is the Chair of the Child Care Council at City University of New York (CUNY).
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