A Parent and Educator’s Lens: Learning to live and thrive with neuro differences during transition
Imagine you are the parent of a young adult with a disability. Maybe you don’t have to imagine that. You, like me, are dealing with the daily and long-term complex obstacles and challenges that often feel daunting and confusing. Likely, you already have or are navigating through the domino effect of cascading emotions before, during, and after a special needs diagnosis.
The diagnosis is positive as it drives decisions, resources, and funding, but it brings natural concerns for the future. “What will happen, how will I be able to best support my child?” Access to high quality, practical, and sustainable resources is an important step that can help you and your young adult during and after transition.
Below are some resources that may help you as you steer your way through this transition and inevitable future decisions. Change is coming but having the ability to form the shape of that change is empowering.
By Toni Burns June 25, 2020
Toni Burns is the mother of three adult children, one with special needs. Her daughter with developmental delays lives with her and is a vibrant young woman who loves working part time in a restaurant. Toni is a strong advocate and voice for our neurodiverse populations, who are faced with social, cognitive and emotional learning challenges. Toni believes these obstacles can be successfully overcome through early intervention, strong community, resources and family networks utilizing human and technological support systems, and a myriad of local, federal, nonprofit and private funding.
She is certified in child development, with almost 20 years as an early educator working with special needs and at-risk populations in public and private school settings, Head Start, and Mackintosh IB Academy for Gifted and Twice exceptional students. She has worked with young children and adults with ASD and other challenges in educational, transition, and vocational programs. Her prior work in case management of early intervention services coupled with her real-life experiences living with a child with a disability has deepened her understanding and commitment to neurodiversity with a focus on the uniquely shared family experiences. Toni is a trained PATH facilitator (Planning Alternative Tomorrows with Hope) focused on person-centered planning.
Toni is a freelance photographer, with a heart for donating her time and talents to nonprofits supporting special needs. She can be found at http://www.gracebphotography.com
What is Autism Spectrum Disorder like?
For a person living with ASD, the world does feel different. A potential hypersensitivity to sounds, light, and touch create an overwhelming environment which leads to anxiety and stress for themselves and those around them. Normal activities can quickly lead to chaos accompanied by disruptive behaviors. All this contributes to isolation, decreased quality social connections and opportunities, and interrupted learning. Individuals living with Autism have also challenges with social and emotional learning, which present long-term challenges in at least one or more areas of social development: relationships, educational learning, vocational obstacles, communication and sensory issues with interpreting physical and expressive cueing.
Young adults with autism have a decreased likelihood of obtaining employment after school and transition. ASD doesn’t disappear after a person turns 18 and leaves high school. What does disappear is the special education services. What replaces that is a complex web of state and federal services that are inherently restrictive for many who do not meet very specific qualifications for funding and services. In addition to this is the expensive option of self-pay. Finding the right balance that is financially and individually appropriate that will garner the best long-term outcomes for success and empowerment is a challenge.
What about transition?
During transition the federal law says people with disabilities must have a transition plan by age 14, but only 58 percent of high school students with autism had one (Wagner, 2007). These services, waivers and programs can also be very difficult to access and understand. During transition pre-vocational and vocational support services are tied to local and federal funding, are equally restrictive to many, and out of pocket costs associated with individual needs and services are expensive. In a National Autism Indicators report published by Drexel University, it showed only 14 percent of adults with autism had paid employment in the community. The report notes this statistic only represents adults with autism who also accessed developmental disability services, but not all people with autism, which highlights the gap in services and supports for individuals specifically with ASD. That statistic means that an astounding 86 percent of people after transition are without paid employment, while The Centers for Disease Control and Prevention (CDC) reports that 1 in 54 children in the United States has ASD.
As a parent of a young adult with neuro differences and as a teacher of children with autism and other neurodiverse populations, I have observed young people with ASD struggle with challenges that many of us take for granted as simple.
Included in these challenges but not exhaustive, is anxiety, behavioral coping, lower sensory thresholds, often cognitive deficits, sleep disruptions, mood instability, seizures and impacted executive functions and decision making. These are individually unique stressors and challenges for people with ASD and other neurodiversities at any age and stage. Reading facial cues is a challenge and can interfere with successful social interactions and connections. These learning challenges more often are obstacles to obtaining sustainable employment.ASD impacts all aspects of life for the individual and their family. Transition quite naturally brings anxiety. The emotional and physical health of the individual family members is a critical and contributing factor to successful outcomes.
What are your initial thoughts as a parent?
I recall the moment I realized my daughter would have lifelong challenges. The realization and acceptance didn’t come right away. My journey was uniquely mine, just as individuals living with ASD share similarities, their journey is unique. My acceptance of a disability label for my child came slowly to me, through the heart and the head like a giant onion peeled back over time.
I won’t sugar coat it, being told your child has a disability is devastating.
With a diagnosis comes the overcoat of grief and loss, a redefining of the future, of dreams and expectations. With time I realized that hopes and dreams can still burn bright alongside the grief and the challenges.
I have always said our gifts and our burdens usually come wrapped in the same box. We just have to unwrap it and take it out of the “box”.
While some things have changed through the years, the parental lens through which we view our daily struggles, challenges and concerns for the future after a diagnosis is likely unchanged. I recall after I received my daughter’s diagnosis, I wondered aloud more than once just how my daughter was going to gain satisfying genuine social connections? How about her safety? Her health? Would she be teased or bullied (she was bullied)? Would other children accept her, and would she have playdates?
What about those “lost” milestones; would she drive? Date? Graduate? How were these lifelong challenges going to impact my marriage and friendships? Was she going to be able to work and how would this come together? I wondered about my family. How were my other two children going to handle and respond to the special aspects of their sister, the potential social pressures on them? What role would they play in her life? Would I be able to juggle all the challenges and be present to give all I could to my family?
A special needs disability impacts the entire family system. Accessing and creating strong supports surrounding social, emotional and career coaching should be started as early as possible through early identification and intervention, which builds a framework for practical and pragmatic strategies that puts practice into action for career and life fulfillment.
The entire family needs support, positive connections and networks to navigate through the emotional, financial and sometimes physical challenges. I discovered early on acceptance and a can-do mindset was helpful. I intentionally worked on reframing my thoughts and in turn modeled habits of mind that my daughter mirrored. I openly work on improved communication with my daughter and family members to achieve solutions and peace of mind. Learning these internal strategies takes practice and is best when practiced and supported. Helpful reading and resources are below.
I discovered some of the greatest challenges for my daughter and our family came after she transitioned after age 21. For some people that transition may occur as early as 17 or 18. Families are faced with a whole new set of challenges. Although these are very real issues for the individual and the family, navigating through these challenges is possible. I’ve learned the value of accessing appropriate social and emotional support and accommodations, coupled with strong networks, partnering with community centerboard case management, pre-vocational and vocational rehab supports which include interview practice and job coaching.
These important steps in structuring an individualized life plan true to a person’s own dreams and goals are basic and intrinsic needs. We lived in four different states as my daughter grew up, however, her transition to adulthood and employment occurred in Colorado. Be sure to look at your state-specific funding, waivers, and programs when accessing support. Amazingly, there is no uniform law or funding standard across the country.
So, what is changing for families and people with Autism?
Many of the challenges individuals and families of individuals with ASD face are finally becoming a part of the mainstream dialog. Public awareness is improved but still has large holes that need filling in the education of teachers, family members and employers, and health care systems. We need to ensure effective and sustainable resources, support, technology and opportunities are accessible, affordable and available to all.
When my daughter was diagnosed years ago, the special needs landscape looked much different. Today, we have fine-tuned technology to enhance and support specific tasks of daily living, social and emotional growth and vocational skill-building and coaching. My daughter is able to use practical and personalized technology to empower and help her achieve her goals and dreams. There has been a paradigm shift in the years since federal reform with ADA and IDEA, from disabilities and weaknesses, to strengths and differences but employers still lag with understanding, opportunities, incentives. Employers often lack appropriate job place accommodations and struggle with finding positions and tasks for people with ASD.
Some large companies are discovering the value of this highly undervalued population and are opening jobs and removing barriers. Research has shown the benefits of hiring people with ASD outweigh concerns and costs. On the whole, employers have observed higher-level work commitment from employees with autism. The very behaviors that present challenges in certain settings are of value in others. Attention to details, comfort with and acceptance of repetitive tasks, sequential thinking are skills beneficial in many work environments. (See below for a list of Autism friendly employers)
After high school, my daughter moved to a transition program until age 21 after which she officially “graduated” from high school. We discovered tools to enable her to create a video resume, apply for jobs, and practice interviews which targeted her strengths and empowered her. Technology services and applications such as Podium for Autism help to empower individuals to reach independence in life and career goals before, during, and after transition for fuller and satisfying lives.
Podium for Autism (formally Autism Sees) understands and addresses the unique needs of people with social and emotional challenges and the long-term overarching goal of providing sustainable vocational support. As with all people, no two of us are identical and our needs are as unique as we are.
Years after her diagnosis, I now look through a lens that is focused on her adult future potential and goals. Leap forward from the school years, from IEP’s, 504 plans, look forward from the doctors and specialists… all the way to transition and the job interview, to individual dreams and goals, redefined yes, but possible.
And imagine beyond that.
Recommended readings and website resources:
Uploaded by Madison Gies, Summer 2020 Intern