From the first months of their children's lives, parents of children with developmental challenges need to coordinate doctor and therapy appointments, investigate multiple schools to find just the right match for their child's particular needs, maintain a home life that is stimulating yet calm, enriching and nurturing.
Accomplishing these tasks is incredibly difficult and a lot to process. But imagine the complications that result with limited financial resources or in single parent families or when there are other kids in the household who also need the care and attention of their parents.
There are simply not enough hours in the day for parents of children with developmental challenges to manage the complicated care needs of their sons and daughters. And managing their own needs to stay strong and healthy to deal with all they'll have to handle represents its own significant challenge.
It's imperative that the supportive systems for parents and children - educational, medical, professional - work cohesively to ensure that the strongest foundation is laid from the start.
There are a number of ways in which "the system" can work well to support better outcomes for families dealing with developmental challenges:
Taking the needs of the parents into account.
Frontline caregivers for developmentally challenged children must first be aware of the particular developmental and social needs of the parents early in the equation. Have the parents accepted the diagnosis? Are they angry or in denial? Do they need someone in similar circumstances to talk with? Do they need talk with a professional about available community financial resources? Do they have a support network? The more stable the foundation the parent has the better that parent will be able to cope.
Making early intervention readily available.
Research strongly suggests that children will benefit from many therapies when they are offered as early as possible. The gains made with early interventions tend to be larger than those made as the children age. Physiotherapy, occupational therapy, speech therapy and behavior therapy can all be initially offered in the first year of life. While it is possible that children will show spontaneous recoveries without intervention, it is not a certainty. To wait for skills to improve naturally, is not worth the risk of stagnation or regression.
Recommending treatments that have clinical research to support their efficacy.
To the point of early intervention being crucial, there are many treatments offered today that have not been adequately tested. While not necessarily harmful, they have only anecdotal evidence to their adoption and the time devoted to the questionable in lieu of the certain is time that cannot be wasted. Likewise, when money to pay for treatment is limited and when professionals are expected to recommend only "what works" for their patients, providers must be very careful suggesting treatment options to their families.
Integrating treatments. This has two meanings. First, integration means that treatments should be available in one clinical setting, to the extent possible. One stop shopping is the model of choice, keeping in mind the demands on parents and children. It is very difficult, tiring, and time-consuming for families to travel from place to place and from professional to professional to obtain needed therapies. Second, integration means that therapists should have the opportunity to share information and work collaboratively. There is a lot of overlap from professional discipline to professional discipline. Sometimes, in the development of treatment goals, all that separates one therapist from another is the jargon being used. When therapists work together to develop treatment goals, share knowledge and talk about progress, treatment time may be reduced and generalization of skills from one situation to another can be increased.
Looking at the individual child. Some children will work best and benefit most in clinical settings, one-to-one with the therapist, engaged in intensive individualized treatment. Others will show the greatest gains if their therapies take place in small groups or in a natural setting, with typical children. The milieu in which treatment is best offered, must be carefully thought out based on the child. A one-size-fits-all model is never best for the children.
It's only by working together that "the system" becomes "a system" of support for parents and children facing neuro developmental disabilities. Taking our best practices, our research findings and the shared experiences of families, we can ensure the best possible outcomes for the future.
I look forward to discussing these strategies, as well as others, at the "Current Trends in Pediatric Neuro Developmental Disabilities Conference" on May 25-26 in Vaughan, Ontario.