Written by Iris Mehler, MS, CRC & Alma Schneider, LCSW
For parents with newly diagnosed children, it seems like early intervention is the holy grail. They think this is where they should put most of their effort; to make sure their children receive as many interventions as early as possible. Sometimes early intervention seems to be a race against the clock as if there is a doorway that will close when their children turn five, and all efforts to help alleviate some of the symptoms of a disability or a condition will be lost.
Many families will do anything they can to improve the prospects and predictions when it comes to their child with a disability. They would not skimp on any resources, be it time or money, to ensure that their child will receive the best possible care. Unfortunately, many professionals seem to fall in line with this and press parents to do as much as they can during the early years. They may not take into consideration the cost of such pressure on families who are now dealing with a crisis, not to mention the potential negative effect on the children themselves.
While services and therapies are clearly important and crucial to help children overcome physical, cognitive, or intellectual disabilities, we as professionals must remember that the most important thing for a child is to have a loving and caring caregiver whose own physical and emotional well-being is in check. There is only so much stress that an adult can handle and still remain functionally and emotionally available for their child with a disability. Oftentimes, the parent must also be available for other siblings in the family and their partners as well.
When so much emphasis is put on running from one therapy session to another, from one doctor appointment to another, families sometimes seem to lose (or at least deprioritize) the basic fundamentals of well-being. This includes sufficient sleep, eating nutritious food, having some time for recreation, relaxation, and spending quality time with their child that is not therapy-based. Additionally, there can be a significant increase in the cost of care for a child with a disability and many families can suddenly fall under significant financial strain.
Professionals in the field working with families with disabilities should always be mindful that the first priority should be “putting the oxygen mask” on the adult caring for the child with the disabilities. When parents are under a lot of stress, the quality of their care may be jeopardized, potentially putting their child at risk, as well as the emotional and physical well-being of the other members of the family. We should be mindful of the expectations society puts on parents of children with disabilities and what expectations the caregivers have for themselves. It is essential to recognize and promote, even for the families of children with the most severe disabilities, that they need to spend time with their children as parents, simply enjoying quality time with their child. The time that is not focused on stretching, exercising, or training, but rather on bonding, enjoying the company of each other or engaging in recreational activities.
Some services can wait and chances are that nothing terrible will happen if we extend the window of opportunity to allow families to bond with their children with or without disabilities. A severely sleep-deprived, malnourished, and/or emotionally exhausted parent is of little help to a child with additional needs. It is in the best interest of every child with or without a disability, to have a loving, healthy caregiver on their side that can tend to their physical and emotional needs.
Only after putting the oxygen mask on the caregiver, can we concern ourselves with improving the outcomes of a disability. It will be most helpful if we first think of the basics, such as leading as healthy a lifestyle as possible and, even more importantly, finding the time and space to nourish and facilitate healthy attachment and a loving and caring relationship. Register for the author’s upcoming workshop by clicking here!
About the Authors
Iris Mehler has 24 years of professional experience, and 13 years of personal experience as a parent and advocate, smashing barriers and screaming equality. In her previous life, she completed a master’s degree in Rehabilitation Counseling and a post-graduate certification in Assistive Technologies. Iris also holds bachelor’s degrees in Psychology and Developmental Education in which she focused on alternative methods of learning while teaching in child development centers in Tel Aviv, Israel, and San Diego, CA. She is a Certified RehabilitationCounselor (CRC) and is currently managing a team of 14 (professionals and paraprofessionals) in her daughter’s home-based, interdisciplinary rehab team. Iris has worked extensively with people with disabilities as a career counselor through individual counseling and leading support groups. In addition to supporting families with communication challenges, Iris provides individual support to families in crisis after a new diagnosis and consults businesses and organizations on creating barrier-free and inclusive environments.
Alma Schneider is a Licensed Clinical Social Worker who has nearly three decades of practice under her belt. She is a mother of four children, one of whom has Prader Willi Syndrome, Autism, ADHD, and unbeatable charm and good looks. In 2010, Almacreated the Montclair Friday Group, free support and social policy group assisting hundreds of NJ parents to navigate schools, family life, and society while raising children with disabilities. In 2021, Alma was asked to be on the People with Disabilities Advisory Committee of the town council of Montclair, NJ to assist in making the town more inclusive and accessible.