Emerging adulthood has been defined as “the period when often people explore a variety of possible life directions in love, work, and worldviews… where the scope of independent exploration of life’s possibilities is greater for most people than it will be at any other period of the life course” [9]. It is usually during this period when people start to mold their personalities and define themselves in their community. Therefore, it is of the upmost importance that our society provides the adequate groundwork on which young adults, especially those with disabilities, can establish and design their own life stories.

There are various psychological models of development that have been put forward to explain the key stages in an adolescent’s life. Some of these models describe this period as filled with change in which young adults are assuming new roles in all facets of their lives. They can experience conflicting feelings between the excitement about the prospect of autonomy and the sense of abandonment due to the previous dependent nature of their relationships with their parents and/or caregivers [10].

The literature suggests that relationships with parents remain the most influential of all adolescent relationships [11], and their support has been associated with good outcomes [12]. During this period, the parents need to talk frequently with their child about his/her interests so that a transition plan can be built upon these interests. The parents need to familiarize themselves with various local and state agencies and file for appropriate services. Most importantly, the parents need to foster and not limit their child’s dreams.

Previous research has mainly focused on retrospective post-transition interviews, and less is known about younger adolescents and their families as they approach the transition period. Given the complexity of the arrangements in which these children grow up, addressing all of their needs at the same time is a challenging task. Moreover, it can be counterproductive in the end, as it can be overwhelming for these young adults to be made responsible for all of their healthcare needs in a short amount of time. Their care should be introduced as a step-by-step process where they are included in decision making, information sharing, while at the same time their parents remain informed and involved. In a study done in Denmark in 2011, 16 young adults with cystic fibrosis were interviewed about their transition experience. One of the highlighted points in this study was that these patients preferred to have a gradual transfer of responsibility of their own medical care during their young adulthood [13]. Similarly, experts in Duchenne muscular dystrophy (DMD) urge that transition not be thought of as a single event, but as a continuing process of increased choices and autonomy [5].

Parents and physicians may differ in their perceptions of when to begin teaching children about self-management of their healthcare. The mean age identified by parents is 12 years, while that of pediatricians is 9.5 years [11]. So, the question remains, when should we start the transition period for children with physical disabilities, in particular those with MDs?

Due to each child’s unique circumstances, it would not be prudent to stipulate a definitive age when parents should start the conversation of transition with their child. Nevertheless, preparation must begin early enough to ensure adolescents develop the knowledge and skills to take ownership of their chronic illness and disease management in an effective manner.

Some of the most common methods that are being used to start the transition stage have been the implementation of “timetables for growing up”. These transition plans have some variability in their designs; nonetheless, most agree that certain “transition topics” should start to be discussed around the ages of 12–13 years. For example, the timetable provided by the Holland Bloorview Kids Rehabilitation Hospital or the MDA’s “Road Map to Independence,” which encourages conversations about topics of human development and social interactions when the child is at the pre-to-early adolescent stage. Once they reach the mid-to-late teens, the timetables focus on developing independent living skills (e.g. contributing to discussions and decisions regarding their medical treatments, being assigned chores around the house, driving vs. public transportation as means of mobility, etc.). Topics like future career goals should also be addressed in a timely manner, as it has been found in the literature that children with disabilities worldwide tend to be excluded from certain schooling subjects (due to lower rates of school attendance given their multiple medical appointments and lower transition rates to higher levels of education) when compared to kids without physical and/or cognitive impairments [14]. Exclusion from education has an immediate impact on a child in terms of exclusion from social participation, reduced personal well-being and welfare, and likely dependence on caregivers.

The parents’ approaches to promoting health and well-being for their adolescents with physical disabilities tend to be diverse. Some see themselves as the primary source of information; others rely solely on school, while a few others view friends and the media as a resource. Some parents have expressed concerns and anxiety about the fact that they believe that their adolescent with a physical disability is going to encounter greater difficulties in relationships and sexual expression [15]. All of these factors will influence the outcomes of the transition period in patients with physical and/or cognitive disabilities. Given the dual role of the parents as both progenitors and caregivers for these children, the literature has described the tendency of these parents to be overprotective [16]. However, another explanation for their “overprotection” during the transition period is that their behavior is a deliberate strategy to provide their adolescent with more time and energy for school and friends.

Nevertheless, the goal of the transition years is to promote the development of skills for independence in multiple facets of the teenager’s life. One of the major concerns that parents of children with disabilities have is the development of a healthy social life and integration into their community [4]. Parents have dual worries of how their children will cope with the changes that all human beings go through while growing up and at the same time adding to the process the complexity of their physical disabilities. It is for this reason that both health providers and caregivers should address socialization of adolescents and young adults prior to them reaching adulthood.

It is important for patients with MDs to feel that they are an integral part of society. At the same time, they benefit from certain events or activities where their physical disabilities are normalized. Several organizations provide free camp experiences for those with MD. The MDA organizes a one-week summer camp for children and young adults (ages 6–17) where they can meet other youth with a variety of neuromuscular disorders and share their life experiences (http://​mda.​org/​summer-camp). The Jett Foundation offers a week-long “Camp Promise” for those with MD (https://​www.​camppromise.​org/​). If the young adult is interested in the fine arts (music, theatre, visual arts), there are programs like the International Organization on Arts and Disability providing career building opportunities in the arts both nationally and internationally (http://​www.​kennedy-center.​org/​education/​vsa/​).