Parents' Desired Outcomes Should Drive Early Intervention
Almost without exception, parents want their children to have more successful lives than themselves. Whether it is academically, socially, or career-related, parents want what is best for their children. Determining what is "best" is a complicated process. Parents must use their own familial experiences, cultural perspectives, belief systems, and knowledge to make decisions that will affect the developmental, communicative, and academic success of their children.
So, what are parents to do and how should they determine what is best for their infant or toddler who was just diagnosed with hearing loss? Once that diagnosis is confirmed, parents need access to information about communication options and expected outcomes as well as the range of available services in the community. The child's audiologist is a pivotal professional in this process as he or she should get this discussion started. The family then should be referred to an early intervention program (usually a statewide system), and appropriate early intervention services should be initiated.
The type, frequency, and intensity of the early intervention services should be based on the parents' desired outcomes for the child. That is, if the child's parents have decided that they want their child to be eventually mainstreamed in a local public school with hearing peers and to communicate using spoken language, then early intervention services should be structured to support those desired outcomes. Too often in too many states parents are given a very limited menu of services that are available and simply told which services will be provided. Of course, when this occurs, it fails the test of having services that are individualized, and the services certainly are not driven by what the parents want for their child with hearing loss.
Ultimately, parents need to make informed decisions about what they consider is "best" for their child. They need to gather information from multiple sources, speak to other families who have navigated the system, and make sure they are informed about what their rights are. Each state has its own unique way of doing things, including how federal laws are interpreted and services provided. With perseverance and due diligence, parents usually can structure services that are appropriate for their child. The key is to be persistent and to not give up until the services provided support those long-term, desired outcomes that are envisioned for the child!
Sep 3, 2009 at 10:22 PM After going through the stages of grief, parents have a need to know what's going on. As you said, they generally have no experience with deafness. Often, parents end up in a stream of action generated by the (medical) professionals...
In itself not bad, as long as the parents educate themself, instead of only goign with the flow.
The parents need to get control.
Another problem is that in a short period of time, the parents can become the experts. They can see what their child needs where this is not obvious for support services, and even less obvious for schools etc.
Getting the services you want for your child can be very frustrating..
We found out that the most important thing to explain was that our daughter was born deaf, and can hear now, but that does not mean she can hear everything, nor that she understands.
CI is an investment, but it needs constant nurturing, or the investment will lose it's value. If support-services do not give the support that is needed now, they will have to give (more expensive-) support later on in life... and that is precisely what CI should prevent.
Sep 4, 2009 at 12:26 PM Cloggy:
Yes, I think we all need to realize that parents usually know what's best for their child. Once parents have information, they can make informed decisions, which is what professionals should be trying to achieve with all parents/families. You make excellent points, and I appreciate your comments!