Parenting is a journey filled with unexpected twists and turns, but raising a teenager with additional needs and profound scoliosis introduces a unique set of joys and challenges. As a mum based in Galway on the west coast of Ireland, I’ve come to appreciate not only the resilience of my child but also the deep lessons she teaches me every day about perseverance, patience, and love. This post explores the impact of this journey (supported by some peer-reviewed research for you science people and personal insights for those of you who want the more personal perspective.
The Joys: Witnessing Growth Beyond Limits
Raising a teenager with additional needs brings with it moments of triumph that many may overlook. Achievements—whether big or small—carry immense significance. From learning a new skill to overcoming barriers imposed by scoliosis, every milestone feels monumental. I am continually surprised when my teen speaks either words or phrases I simply do not expect to hear her say.
1. A Resilient Spirit Despite the physical and emotional challenges associated with scoliosis and additional needs, teens often demonstrate remarkable resilience. Research by Reichel and Schanz (2003) highlights how adolescents with scoliosis develop a profound sense of emotional maturity over time, often finding ways to adapt and thrive in social and academic environments. Watching my teen navigate their world with determination has been a privilege, teaching me that resilience is not the absence of struggle, but the ability to move forward despite it. It is also humbling as the simplest tasks for her require significant focus and concentration. Carer fatigue is real but carer pride is a badge of honour.
2. Deeper Connections Caregiving fosters a profound emotional bond. According to Norzila et al. (2015), families with children who have complex medical needs report stronger familial relationships and a deeper appreciation for shared moments. Each day presents opportunities to celebrate progress, laugh over shared triumphs, and embrace life’s unpredictability. For me, as a mum to a child with a moderate to severe learning disability, plus a physical disability, means that there is always childlike wonder in my house. The Tooth Fairy and Easter Bunny visit and so does Santa. The levels of excitement around such visits emanates throughout the house and positively impacts on everyone. Such moments are a beacon of light and help get through the more difficult days that are experienced.
3. Advocacy as Empowerment Supporting a teen with additional needs and profound scoliosis has turned me into a passionate advocate. Research by Raina et al. (2005) emphasizes how advocacy can transform caregiving stress into empowerment, as parents find purpose in fighting for their children’s needs. In Ireland, a group was set up by parents called Our Children’s Health. Three fathers of children with disabilities campaigned outside the Taoiseach’s office every day from 20th May, 2014 until 2nd March, 2017 (1,028 days) to campaign for an automatic entitlement to a medical card for any child in receipt a Domiciliary Care Allowance. This allowance is paid to caregivers for children from birth to 16 years of age if the child has a severe disability and lives at home. A medical card gives you free access to General Practitioner Care, Hospital Care and Free Prescriptions also. Their tireless efforts and support from the general public ensured their voices were heard and their successful campaign had a significant and positive impact for thousands of families in Ireland.
The Challenges: Navigating Complex Terrain
With the joys come undeniable challenges—both physical and emotional. Balancing the demands of caregiving with maintaining a sense of normalcy in family life requires resilience and adaptability.
1. The Physical Strain Profound scoliosis often requires intensive medical care, from regular doctor’s visits to managing pain and mobility limitations. Studies such as those by Weiss and Moramarco (2013) have documented the high physical burden scoliosis places on both teens and their caregivers. As a mum, I’ve found myself juggling physiotherapy sessions, specialist appointments, and ensuring that everyday life remains as fulfilling as possible. As my daughter was diagnosed with idiopathic infantile scoliosis, her journey with her orthopaedic team commenced at one years old, with surgical intervention commencing at age 2. Repetitive growing rod surgeries (lengthening and part exchange) became the ‘norm’.
2. Emotional Toll It’s common for both parents and teens to experience emotional fatigue. Teens with scoliosis may face self-esteem issues, as noted by Asher and Burton (2006), who found that body image concerns often peak during adolescence. Supporting my teen’s mental well-being while managing my own has required seeking professional help and fostering open, honest communication. Connection with professionals together with fostering friendships with other parents in similar situations significantly reduces emotional fatigue. As the old adage states… ‘a problem shared is a problem halved’.
3. Navigating the System Accessing appropriate resources for a child with dual challenges—additional needs and profound scoliosis—can feel like navigating a maze. Services are often fragmented, requiring parents to become experts in healthcare, education, and social services. Peer-reviewed research by Brehaut et al. (2004) highlights the overwhelming stress caregivers experience due to systemic barriers and the lack of integrated car
Finding Strength and Hope
Despite these challenges, hope persists. Support groups, both online and in-person, have been a lifeline for me, offering camaraderie and shared experiences. Evidence suggests that parents who engage with peer support networks experience reduced stress and increased confidence in their caregiving roles (Trute et al., 2010). Similarly, celebrating small victories, from a pain-free day to achieving a goal, has provided moments of light in what can sometimes feel like an uphill journey.
Lived experience is also crucial to both the person with the medical issue and their caregiver. Research shows that while academic and medical research is paramount to identifying and treating medical issues, “there is evidence to suggest that those who lived with experience hold powerful insights that can help improve health systems, research and policy.’ [1]
Having lived experience is a powerful tool to have and enables you to contribute to discussions/decisions on your care plan and long term medical/community intervention. Subsequently, for those in a caregiving role, your insight is invaluable to other caregivers, particularly those on the start of their journey. I personally have benefited from such advice from other caregivers.
Lessons Learned: A Mum’s Perspective
As a mum, raising a teenager with additional needs and profound scoliosis has taught me invaluable lessons:
- Perspective Matters: Each challenge is an opportunity for growth.
- Ask for Help: It’s not a sign of weakness but of strength.
- Celebrate the Little Things: Progress, no matter how small, deserves recognition.
Most importantly, my teen has shown me that there is beauty in imperfection and strength in vulnerability. Through their journey, I’ve found a greater appreciation for life’s resilience and the power of unconditional love.
Conclusion
Raising a teenager with additional needs and profound scoliosis is a journey marked by joy, resilience, and challenges. It requires balancing the physical and emotional demands of caregiving with a deep appreciation for life’s small victories. For parents on similar journeys, know that you are not alone. Seek support, celebrate progress, and take pride in the extraordinary resilience of your child and yourself. The bond shared with a child with a disability is a deep bond, intensified by the shared experiences of medical, physical, psychological and emotional states of being. Research shows that “Parents spoke about profound changes in their lives as a result of caring for their child, but such changes often brought fulfilment to their lives and this appeared to help them cope reasonably well. For example, many parents expressed a deep personal bond with their child which they felt was unlike any other.”[2]
References
- Asher, M., & Burton, D. (2006). Adolescent scoliosis: Psychological implications and self-esteem outcomes. Journal of Pediatric Orthopaedics, 26(5), 467-472.
- Brehaut, J. C., Kohen, D. E., & Raina, P. (2004). Caregiving and its impact: Insights from the Canadian National Population Health Survey. Pediatrics, 114(4), e355–e361.
- Norzila, M. Z., Anuar, M. S., & Rosliza, A. H. (2015). Parenting challenges in chronic illnesses: A qualitative perspective. Asian Social Science, 11(16), 83-93.
- Raina, P., O’Donnell, M., Rosenbaum, P., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), e626-e636.
- Reichel, D., & Schanz, J. (2003). Psychosocial impact of scoliosis in adolescence: A review of the literature. Spinal Deformities, 15(4), 239-246.
- Trute, B., Hiebert-Murphy, D., & Wright, A. (2010). Coping strategies of parents raising children with severe disabilities. Child: Care, Health, and Development, 36(1), 4-13.
- Weiss, H. R., & Moramarco, M. (2013). Scoliosis treatment in adolescence: Current challenges and opportunities. Current Pediatric Reviews, 9(1), 59-66.
[1] https://www.whysocialscience.com/blog/2024/1/31/because-it-helps-us-incorporate-lived-experience-into-health-research
[2] https://eprints.maynoothuniversity.ie/id/eprint/9297/1/SM-Caring-2007.pdf