In this blog piece, Thomas J. McGranahan Jr discusses his personal struggles with epilepsy, and the importance of staying strong in the face of adversity.
By Britt-Mari Sykes Ph.D.
We are parents and caregivers who love, support, cheerlead, comfort and accept our neurodiverse children every day.
We are tireless advocates in the educational, medical and mental health communities and sometimes even in the political arena on behalf of our children.
We are advocates for our children in their schools, in after school and community programs. We advocate for their equal access to these programs, for their right to participate and contribute. Very often these experiences in advocacy expand beyond our own children and we contribute time, effort and expertise to larger questions of education and community. Both could ultimately be stronger and healthier when they are built on the premise of acceptance and inclusion.
We are also frontline educators and therapists at home with our children. We creatively and spontaneously craft educational and therapeutic approaches rarely seen or acknowledged by others but that are the outcome of our daily interactions, conversations, listening and observations of our children’s ‘living’ experiences.
We are continuous learners and quick studies. We take the time to absorb and decipher the medical and therapeutic models of the day while simultaneously assessing the impact, appropriateness, value and possible outcomes for our children. We navigate the systems of diagnostics and pharmacology, a world that can be informative, useful and liberating just as it can also be confining, uncomfortable, inappropriate and possibly harmful to our children.
We accompany our children to medical appointments and assessments of all kinds. We visit our children in hospitals and crisis units. We spend hours together, driving, busing and waiting. During this ‘time’, a thousand conversations take place, sprinkled with laughter, tears, frustrations, secrets, feelings and experiences, all of which shape the evolving relationship we have with our children.
We are comforting buffers and listening ears to the cruelties, misunderstandings, exclusions and isolation our children can experience. We feel, empathize and agonize with our children.
We also cheerlead and delight in the many accomplishments of our children. We learn to appreciate, with them, the many successes in a single day or single moment. We are less focused on the execution of a five-year plan; we are far more adept at taking notice of and being fully present in the many meaningful and rich moments in our children’s lives.
Our lives are enriched beyond words by our neurodiverse children and our lives are also challenging. We balance our fierce love and devotion with privately expressed fear and deep worry. We balance our tireless strength with self-doubt. We take on too much and often neglect our own self-care. We are adaptable and at times inhumanely patient. We are always fully human and never perfect.
We offer our love and support while simultaneously striving to provide our children with freedom and space so that they can learn to navigate the world on their own terms, so that they gain confidence in what they have to offer, so that they experience resilience, and take pride in their accomplishments and feel, deeply, that they have opportunities to flourish and have a rightful place in their communities and in their world. Ultimately, we want them to feel that their experiences are meaningful and legitimate and that they can learn, they can grow, they can contribute to and enjoy rich relationships because of their unique ways of being.
We are the devoted and proud parents and care givers of neurodiverse children.
Britt-Mari Sykes Ph.D. is an integrative career counselor with an extensive background in existential and humanistic psychotherapies, career counseling and teaching. She is the author of Questioning Psychological Health and Well-Being (2010), a historical and contemporary examination of the meaning of psychological health and development. She is currently working on her second book: a collection of essays on education and career from an existential analytic perspective. Britt-Mari has guest-lectured extensively in classrooms and at conferences in Canada, the USA and Europe on the history of existential psychology, the theory of Existential Analysis, meaningful and fulfilling living and on creating vocation. She has served on panels at international conferences on human development, ethics in everyday life and the value of work. Based in Ottawa, Canada, Britt-Mari works remotely with a diverse clientele both nationally and internationally helping them to create personally empowered solutions to career transition, burnout and building meaningful careers.