When a baby is born with health issues, that child depends on their parents to make the best decision possible for them. The baby does not have the ability to communicate, excluding the whines, whimpers, wails and tears that can signal to the parents (or caregiver, like a big brother or sister, or maybe a babysitter) that there is something wrong.
As the child grows and is able to communicate with words; or maybe by the use of sign language; if the child is deaf, they can more be more specific and request help in resolving the health issue.
Most of the time, until the child enters kindergarten, the child relies solely on the parents and family members to provide the help and support they need. That can be quite draining on the parents, and other family members, especially if the child is dealing with more than one health issue at a time.
Stress and tension can build and that is not good, for any of those involved. The need for an expanded "support network" is advised. Education is needed on how to deal with the various health issues of the young. Reaching out to those who share a similar health issue can be quite beneficial.
The one thing to be aware of, even though schools are where kids and young adults learn a variety of things, from English to Math, to Science and Humanities, not all educators know "everything" about everything. That includes how to deal with health conditions. Also, it is incumbent upon the student to educate the educator about their health conditions. That may very well include the Principal, the gym instructor, the janitor and even the school nurse. Yeah, even the school nurse.
The one thing that needs to be addressed is when children grow and enter puberty and then start getting that nudge from within to spread their wings. Children grow up into young adults and need to know how to create their own support network that they can rely on. Mom and dad, will always be there, but, young adults can relate to other young adults with a greater ease. After all, mom and dad are "dinosaurs", in the eyes of their own kids.
Learning how to help young adults do research on their own health condition(s) is very important. Support groups and advocacy entities can be quite helpful. Researching online can also provide a wealth of information that can be quite beneficial. Various medical schools publish new treatments for various conditions. This information can be taken to the child's primary care physician and discussed to see if the new treatment may be an option.
Young adults have a habit of turning into older adults. Older adults need support, too. The problem is, in a great many families that have to deal with health issues, dysfunction in communication affects family members. They can become distant, withdrawn and frustrated. Yet, support networks are still needed. The right support network can help. Seek it out and find it.
